I came across this list today and thought I should share it with you all. While reading it, it all makes sense. Of course these things can cause a flare-up! However, knowing how complex our symptoms, treatments, and lives are, it sure doesn't hurt to have a handy list like this to help you pin down causes and maybe help you plan to avoid some of these, if possible.
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Tuesday, November 5, 2013
Sunday, October 20, 2013
Changes for Better Sleep with Fibromyalgia
Insomnia was one of the symptoms that helped my doctor diagnose Fibromyalgia. For some reason, we fibromites cannot seem to reach the deepest stages of sleep, and frequently, it can be difficult to get much sleep at all. I have spent several years, including a handful of really bad months straight, waking up around 2am or so and not falling asleep for several hours, or sometimes, not falling asleep at all the entire night. Today, thankfully, I have finally got a good routine of sleep going again. If I can't get the quality of sleep I need, I'm at least getting the quantity, which still makes a big difference for me and my sanity. So, for those of you going mad from insomnia, I thought I'd share what seems to be helping me catch more Z's.
Several things have changed for me, including the meds I take, as well as several of my habits and personal goals. I try to notice correlations between how I feel and what I do or what is happening when I have questions about new or persistent symptoms that pop-up.
Journaling
I can't say enough about journaling, blogging, or at least keeping track of things quickly in a calendar or other logging medium. When you wonder how long a symptom has been around, check your entries and eliminate the need for guessing. If you wonder if the weather is behind an infrequent symptom, check your entries for clues. When it's time to visit the doctor, prepare with bullet points and questions after reviewing your entries since the last visit. Write stuff down, even if you don't think it's relevant. Sometimes that added detail can be important later on.
Several things have changed for me, including the meds I take, as well as several of my habits and personal goals. I try to notice correlations between how I feel and what I do or what is happening when I have questions about new or persistent symptoms that pop-up.
Journaling
I can't say enough about journaling, blogging, or at least keeping track of things quickly in a calendar or other logging medium. When you wonder how long a symptom has been around, check your entries and eliminate the need for guessing. If you wonder if the weather is behind an infrequent symptom, check your entries for clues. When it's time to visit the doctor, prepare with bullet points and questions after reviewing your entries since the last visit. Write stuff down, even if you don't think it's relevant. Sometimes that added detail can be important later on.
Medications & Supplements
Firstly, like many of you, I am side-effect sensitive to lots of medications. I've tried Lyrica, Cymbalta, Savella, I'd been on SSRIs and SNRIs, muscle relaxants, and Rx opioids for pain, plus several supplements, per my various doctors over the years. I'm now happy to be OFF the meds that raised my blood pressure and body temperature and caused me more grief than relief for many months leading up to early last year. I now only take one medication regularly: cyclobenzaprine (Flexeril). I take it at night to allow the drowsiness help me fall asleep while it works to help relax my muscles. I love it when I can get more than one benefit from one thing. The muscles aren't "fixed", but it definitely helps and also helps me feel sleepy at bedtime. I'm very glad the same dose is still effective for me, too. On top of everything else, it's not a new drug, so I can get the generic version and not worry about ridiculous insurance copays. (Stressing over health costs does not help one get sleep.)
Caffeine
My coffee maker sits in the pantry unless we have guests over. I like the taste of black coffee and used to drink cup after delicious (and free) cup in the office, enjoying the warmth and aromas all day long. My husband warned me that I would become addicted. "Pish posh," I told him. "Caffeine doesn't do anything to me." However, he was vindicated when he pointed out that I was getting headaches around the same time and day each weekend. Needless to say, these headaches unnecessarily contributed to my less than restful weekends. Once I realized my body was addicted to the caffeine, I made a conscious effort to reduce my intake of regular coffee at the office until I found a good balance. So I now have one cup, or occasionally two cups of black regular coffee on any given day, before lunch time, and then switch to decaf, tea, or water for the rest of the day. No more weekly headaches and sleep is much more available to me now. I also stay hydrated better, which keeps headaches away as well. It does make a difference after all.Food
I started with some simple recipes I found online (including that spinach, banana and pineapple wonder) to get the proportions right, but after a few times, I eyeballed everything and made up new recipes. Pinterest has plenty of interesting smoothie recipes to try. It wasn't until my husband wanted to lose some weight that he got into making smoothies every weekday morning for breakfast, and a full pitcher is enough for 2 servings, so I get whatever he makes. I really love them! If you like fruit, but hate the veggies you know you should eat, definitely try blending them together for a tasty and nutritious, and easy to digest meal. You can get creative and add all sorts of fun things, like nuts, seeds, honey, dark chocolate, nut butters, squashes... anything you can blend, basically. Experiment and find your favorites.
Physical Activity
I made a pretty easy resolution this year to make sure I exercise at least a little bit every few days. I have been doing yoga classes weekly, but when those went away, I took what I learned from class and did my own custom routines at home. Yoga is one of several activities I do for exercise. Others including walking, getting on the elliptical machine, stair-climbing, and various gentle stretches and exercises for my hips and back - areas I need to keep strong and stretched to keep some of my troublesome symptoms down. The idea is to keep moving to try to prevent those awful muscle spasms, keep my blood circulating, and of course, to keep my weight healthy. I noticed that keeping track of my activities helps motivate me to do more. I provide a link to my activities in this exercise focused post.
Sleeping Positions
I made a pretty easy resolution this year to make sure I exercise at least a little bit every few days. I have been doing yoga classes weekly, but when those went away, I took what I learned from class and did my own custom routines at home. Yoga is one of several activities I do for exercise. Others including walking, getting on the elliptical machine, stair-climbing, and various gentle stretches and exercises for my hips and back - areas I need to keep strong and stretched to keep some of my troublesome symptoms down. The idea is to keep moving to try to prevent those awful muscle spasms, keep my blood circulating, and of course, to keep my weight healthy. I noticed that keeping track of my activities helps motivate me to do more. I provide a link to my activities in this exercise focused post.
Sleeping Positions
Before Fibromyalgia came along, I always used to prefer sleeping on my side, but I recently started to notice that, although I can fall asleep on my side, I almost always wake up on my back. I used to hate sleeping on my back, but with everything in some level of pain, it makes sense that my hips, knees, and shoulders all feel better when I'm not putting pressure on them. So now, when I'm ready to go to sleep, I frequently settle into position on my back with my head slightly turned to one side, especially in the middle of the night, or if I'm having a particularly painful spasm at bed time.
Everyone is different, of course, and there may be things I didn't remember to list or didn't realize make a difference with sleep. If you have other tips for better sleep for fibromites, please feel free to comment. Sweet dreams.
Everyone is different, of course, and there may be things I didn't remember to list or didn't realize make a difference with sleep. If you have other tips for better sleep for fibromites, please feel free to comment. Sweet dreams.
Thursday, August 29, 2013
Where Does the Time Go with Fibromyalgia?
I remember, once upon a time, when I could get up early, do a full day's work, exercise, do errands at lunch, and even do some shopping here and there, after work, or do some chores or enjoy some hobbies, make and eat dinner or go out with friends, relax, go to bed, get a good night's sleep and do it all over again the next day. I could do it all and enjoy it!
These days, I drag myself out of bed much later, force myself to stretch a little, get to work later, grab lunch and eat at my desk, go home later in the evenings, collapse when I get home or make some sort of dinner, eat, look at Facebook for a few minutes, then head for bed and sleep as long as I can. I definitely need more sleep now than I used to before FMS. It also takes me longer to do everything, especially in the morning, because my body is so stiff and in pain. I strive to keep up with the old me - the "normal" me, yet it seems I have a lot less time to get it all done. Where does the time go?
Yes, I blame the Fibrobeast.It makes me move more slowly, think more slowly, and requires me to sleep more.
Plus, with pain and fatigue following me around with everything I do, I am not fully able to focus on what I do. As a result, I have the additional burden of feeling crappy when I don't remember something or have to ask others to repeat what they said, or can't follow a story. I try, I'm just at a distinct disadvantage here. If you're a "normal", try to imagine focusing on a verbal explanation or story while a dog bites you in the leg. Suddenly the story is not a priority, right?
I'm constantly trying to override the pain hierarchy while living my life. It's not easy. I'm actually surprised I can still hold down a job. It's a pretty technical and abstract one, at that. I definitely use a lot of energy keeping up with the workload and trying to ignore the physical hurdles every day.
Getting plenty of sleep is important for everyone, but especially for those with Fibromyalgia, because our brains don't let us reach all the deepest, rejuvenating stages of sleep. The best we can do is hope for quantity and accept the poor quality of our sleep. I have spent many a long night wide awake for several hours at a time while waiting for my brain to retire and let me sleep. I've also had a few nights when sleep never came at all, and I was awake all night because I could not sleep, despite my exhaustion.
These days, I'm glad to report that I do sleep on most nights and sleep for most of the night. The medicine I take also keeps me asleep longer, which is good, but takes more time from my day. I guess I just wish I didn't feel like I'm always dragging myself through mud and pulling a huge boulder to get where I need to go and do what I need to do.
The lesson learned here is to lower my own expectations of what I can accomplish. My daily "spoon" allotment has been lowered and I need to be more realistic about how many "spoons" it really takes for me to get through a day, and for each of my personal tasks to get done.
Tuesday, May 21, 2013
The Fragile Balance of Activity
I'm finding myself ever entangled in the grasp of life's endless supply of tasks. Why is there so much to do? Is there, really? Am I creating work where I don't need to? Perhaps I'm giving in to my overly ambitious, Type-A personality and setting my goals too high. That could mean I'm feeling better and more like a normal (Type-A) person than a sick person. Yeah, that's it. I'll take that as a good thing. Yay me!
Anyway, I just wanted to pop in here and let you know I'm still stretching, still exercising, still eating my yummy salads, still drinking water and homemade fruit smoothies, and still doing mostly better, overall. However, I have recently had my body remind me that I'm still a fibromite, no matter how well I've been assimilating into society. It can be easy to forget I'm not normal while maintaining at whatever level of pain management I can achieve.
For example, I did just an hour or so of weeding and planting in my native garden last Saturday morning. As soon as I finished and came back inside to clean up and rest, I realized all the pains I'd been ignoring to get the work done. As a result, my body has been holding onto a grudge against me for 4 days now, as revenge for that hour of work. I'm only today feeling some relief in my feet and lower back, but it's still not down to my usual level yet. My hamstrings are still very tight. Just leaning forward makes the soreness behind my knees escalate. But I'll be okay. I just have to get through this and remember the lesson for next time I'm tempted to ignore my good sense and overdo.
Here's an interesting observation related to overdoing: when I push myself and do about half an hour or so of moderate activity, my body isn't just tired and achy afterwards; I get really sleepy, regardless of the time of day. I like to take 20- or 30-minute walks around the neighborhood in nicer weather, but afterwards - boom! I'm sleepy and dead tired. Much of Saturday after gardening was spent recuperating on the couch, a la sick day, watching television for distraction from the pain.
I'm hoping you are finding a balance between too much and too little activity. It's been 6 years now and I'm still trying to figure out mine. But hey, those who continue to learn things into adulthood remain forever young, right? Keep learning.
Tuesday, July 24, 2012
Letter to My Future Self
Wow, summer is just flying by! Where does the time go? I can't believe July is almost over.
I have been doing relatively well with fibro, being active, and eating healthier. I still have issues, like trouble sleeping and pain symptoms, but overall, I feel much better lately and have been using my (unpaid) intermittent FMLA time less.
One idea I had been thinking about doing for a blog post is writing to my future self. Many of us write in out journals and blogs about how things are going at the present moment, but even if we don't do it regularly, we may, someday, look back and read an old entry, for whatever reason. Why not tuck in a little message to our future selves?
My message to me, whenever it may be that I read it, and however I am feeling then, follows...
Dear Benia,
I hope you are well. I am doing much better lately. I've been eating healthy lunch salads from Whole Foods most work days, and doing Vinyasa yoga each Wednesday for an hour.
My new fibro doctor is very nice and reduced my medications to just one for fibro, Cyclobenzaprine (aka Flexeril). I am doing well as it helps with muscle spasms as well as sleep. (I take it at bedtime.)
I am currently off all supplements until I need them and doing okay. My IBS symptoms are under control, thanks to my realizing I was getting too much of some fat-soluble vitamins from my diet, and did not need additional supplementation.
Work is busy and a bit stressful at the moment, for both of us, actually. We are hoping to make some positive changes there.
The master bathroom remodel is mostly finished, though we are still waiting for a couple of doors to come in and get installed. The project started in April! I'm just glad it's almost over.
The weather has been extremely hot and dry this year. The summer weather started at the last week of winter, in March. We've never seen anything like it! Many if our native plants are blooming early this year. They are surviving, though, and the wildlife is happy to enjoy it, too.
We have also been having a lot of freak thunderstorms - almost exclusively. They roll in, pour rain for a bit with plenty of wind, lightning, and even hail. Then they move on and it's back to hot, calm, sunny weather.
It's been a strange year, but I'm trying to focus on the positives. I am going to update my WRAP soon, since I have learned a lot about myself since I created it.
Hope you are doing great. I love you, and don't ever forget that!
Benia
Wednesday, June 27, 2012
The Mack Truck is Back
So I had two good weeks without many symptoms, feeling good and in control of things with diet and exercise happening and everything. Then Monday, something started up and I'm flaring up for some reason. Was I too greedy with doing things while feeling good that I triggered a flare by being too active and not resting?
Last night I was awake all night. Not so much as a nap came over me - all flippin' night. I tried relaxing in bed with ear plugs, without ear plugs, tried lying on my back, my sides, tried thinking of pleasant things. Nothing. Hours and hours of stressful thoughts about various things going on at work that have been bothering me lately kept creeping back into my mind and and I could not fall asleep. The stress broke me. I don't know what it is about the middle of the night, but I felt so hopeless and frustrated. I moved to the couch and read blog posts in my Google Reader on my phone to try to take my mind off things, since I'd given up on sleep. Forget work today. There's just no way. I am a wreck. I took a much-needed sick day.
It seems my abdominal area is tender and painful lately, mostly near the left side. Air bubbles or ulcers - I don't know any more. It doesn't seem to matter what I eat, unless the tiny bits of apple I found in yesterday's fruit started something, but I picked them out. (I'm allergic to raw apple skins.) I just feel crappy. Then there's the back spasm in my right side that came back to life. Even the hydrocodone I took at bed time wasn't helping that. I wonder if the medication kept me up instead of making me drowsy. Side effects don't always make sense in my body.
I've been trying to stay on this side of the sane/crazy borderline, but last night I think I wandered over the line a bit. My mental state seems back in good enough order, but my body is stuck in physical disarray at the moment, and notice that it affects my thinking a bit.
As always, when I stay home due to illness, I can't help but feel the invisible pressure of all those chores and tasks I have to do. There is some compromise where I go and do a couple of easy things, but I have a hard time just resting, which is what I need to be doing. For instance, I have been meaning to update my WRAP and wish I would do that, but I know I should not be at the computer too long with this spasm screaming at me. I washed up our farm veggies (we have them delivered weekly from a local CSA, Wellhausen Farms) and made a healthy salad for lunch, but it took a very long time, and I was tempted to just grab something like cereal and leave it all undone. Despite all the healthy ingredients in my salad today, my belly is also complaining again and uncomfortable. I folded some laundry, too, because I knew it would nag at me if I didn't. Despite my fatigue, I cannot rest easily at all. This is one of the common frustrating symptoms of Fibromyalgia.
I hate that I can feel so great, then shitty, so quickly. It makes me feel bipolar in some ways. I was hoping I could coast through the summer feeling almost like a normal. I guess I had forgotten my limitations again and overdone it with activities. I will learn from this flare, just like with every flare, but I'm not enjoying this lesson. Ugh. Time for me to lie down. I hope my next post is more fun than this one.
Last night I was awake all night. Not so much as a nap came over me - all flippin' night. I tried relaxing in bed with ear plugs, without ear plugs, tried lying on my back, my sides, tried thinking of pleasant things. Nothing. Hours and hours of stressful thoughts about various things going on at work that have been bothering me lately kept creeping back into my mind and and I could not fall asleep. The stress broke me. I don't know what it is about the middle of the night, but I felt so hopeless and frustrated. I moved to the couch and read blog posts in my Google Reader on my phone to try to take my mind off things, since I'd given up on sleep. Forget work today. There's just no way. I am a wreck. I took a much-needed sick day.
It seems my abdominal area is tender and painful lately, mostly near the left side. Air bubbles or ulcers - I don't know any more. It doesn't seem to matter what I eat, unless the tiny bits of apple I found in yesterday's fruit started something, but I picked them out. (I'm allergic to raw apple skins.) I just feel crappy. Then there's the back spasm in my right side that came back to life. Even the hydrocodone I took at bed time wasn't helping that. I wonder if the medication kept me up instead of making me drowsy. Side effects don't always make sense in my body.
I've been trying to stay on this side of the sane/crazy borderline, but last night I think I wandered over the line a bit. My mental state seems back in good enough order, but my body is stuck in physical disarray at the moment, and notice that it affects my thinking a bit.
As always, when I stay home due to illness, I can't help but feel the invisible pressure of all those chores and tasks I have to do. There is some compromise where I go and do a couple of easy things, but I have a hard time just resting, which is what I need to be doing. For instance, I have been meaning to update my WRAP and wish I would do that, but I know I should not be at the computer too long with this spasm screaming at me. I washed up our farm veggies (we have them delivered weekly from a local CSA, Wellhausen Farms) and made a healthy salad for lunch, but it took a very long time, and I was tempted to just grab something like cereal and leave it all undone. Despite all the healthy ingredients in my salad today, my belly is also complaining again and uncomfortable. I folded some laundry, too, because I knew it would nag at me if I didn't. Despite my fatigue, I cannot rest easily at all. This is one of the common frustrating symptoms of Fibromyalgia.
I hate that I can feel so great, then shitty, so quickly. It makes me feel bipolar in some ways. I was hoping I could coast through the summer feeling almost like a normal. I guess I had forgotten my limitations again and overdone it with activities. I will learn from this flare, just like with every flare, but I'm not enjoying this lesson. Ugh. Time for me to lie down. I hope my next post is more fun than this one.
Thursday, May 10, 2012
Great Overview Video of FMS
Today I came across a great video. It's a doctor giving a presentation about Fibromyalgia. He describes what it is, what it isn't, how it's diagnosed, how it's treated, what patients experience, how Fibromyalgia pain has been studied and measured to be different than in other people. There are detailed descriptions of many topics and lots of tips on treatment (especially non-drug treatments) and I even learned a few things. At the very least, my foggy brain was reminded of things I'd forgotten I knew.
As I watched, I found this video to be a useful educational tool for both Fibromyalgia patients and their loved ones alike. Direct people who are confused about FMS to this video, especially to certain areas relevant to the questions that perhaps you cannot find the right words to explain. It's an hour and a half long, so if they really want to know, they'll watch. That said, you may need to take breaks and watch it in manageable chunks. I also suggest keeping a pad and pen nearby, for any notes you may want to jot down for yourself. There is also a question-and-answer segment at the end as well with questions from the audience.
I've been diagnosed for over four years now, and have been experiencing chronic pain for over five years. Having read and learned so much since then about Fibromyalgia, I must say that watching this overview was a great review that kind of puts all the pieces together nicely.
I realize, though, that not all aspects of the condition are mentioned in this presentation. For instance, pacing and stress are briefly mentioned, but not given as much time as they might deserve, if relating the portion of time in the video vs. importance in a fibromite's world. He also doesn't go into great detail about every last symptom that might be grouped into the syndrome, though he picks several of the big ones. This is a pretty detailed overview of the condition with what we know about it now. Hopefully we will learn more in the coming years about the cause and better ways to treat or (dare to dream) cure it.
I hope you enjoy this video and learn something from it. Share as needed. I also hope that friends and family members of Fibromyalgia patients, and perhaps others in the medical community or general population, will watch at least some portion of this video and try to understand this confounding syndrome which, even Dr. Gross admits, doesn't really belong in any particular medical category because it affects everything.
As I watched, I found this video to be a useful educational tool for both Fibromyalgia patients and their loved ones alike. Direct people who are confused about FMS to this video, especially to certain areas relevant to the questions that perhaps you cannot find the right words to explain. It's an hour and a half long, so if they really want to know, they'll watch. That said, you may need to take breaks and watch it in manageable chunks. I also suggest keeping a pad and pen nearby, for any notes you may want to jot down for yourself. There is also a question-and-answer segment at the end as well with questions from the audience.
I've been diagnosed for over four years now, and have been experiencing chronic pain for over five years. Having read and learned so much since then about Fibromyalgia, I must say that watching this overview was a great review that kind of puts all the pieces together nicely.
I realize, though, that not all aspects of the condition are mentioned in this presentation. For instance, pacing and stress are briefly mentioned, but not given as much time as they might deserve, if relating the portion of time in the video vs. importance in a fibromite's world. He also doesn't go into great detail about every last symptom that might be grouped into the syndrome, though he picks several of the big ones. This is a pretty detailed overview of the condition with what we know about it now. Hopefully we will learn more in the coming years about the cause and better ways to treat or (dare to dream) cure it.
I hope you enjoy this video and learn something from it. Share as needed. I also hope that friends and family members of Fibromyalgia patients, and perhaps others in the medical community or general population, will watch at least some portion of this video and try to understand this confounding syndrome which, even Dr. Gross admits, doesn't really belong in any particular medical category because it affects everything.
Fibromyalgia: It's Real It's Manageable What You Can Do
Tuesday, March 27, 2012
Eye Twitch; Flexeril and Symptom Update
Since yesterday morning, my left, upper eyelid has been twitching intermittently throughout the day. It's nothing I haven't experienced before, and it's pretty mild, but it's still happening right now, and it makes me self-conscious when I'm talking to people, though it's not a big deal if they see it. Everyone's had this one time or another. I just wonder how long this stint is going to last.
According to several web pages about this, I need to rest and relax more. (Unwindsday, here I come!) I have been getting much better sleep since getting off Savella, though I've had some odd back-of-the-neck pains that wake me during the night. It's a stiffness kind of pain that restricts my movement and I have a hard time getting comfortable. I don't know what that's about. It's a bit scary at the time. Everything seems more scary in the middle of the night for some reason. Maybe my brain is not ready to think properly then.
I am going to visit my new rheumatologist this Thursday to find out all my lab test results (12 tests) and see if we can learn anything from them about why I'm experiencing Fibromyalgia. I'm also going to let her know how I'm doing on the new drug she prescribed, Cycolbenzaprine (generic for Flexeril).
With the new medicine, things started out a bit weird - the first night I used it, I woke up about an hour after bedtime, wide awake, and was just this side of believing that I might realistically die that night. I have no idea why. Perhaps my heart was racing or something, but I felt somewhat out of control, different. I lay there awake, pondering the impacts of death. It was very weird and it's stupid to think about now, after the fact, but I did really believe it. Finally, after some time, I convinced myself that perhaps this flavor of crazy was brought to me by my change in meds, and that the side effect may be something mental. I fell asleep and was fine in the morning. I lived to laugh about it.
Mostly I think the new drug is fine, it just made me feel a little anxious or something like that the first few days. I've been having headaches, too, almost daily for several days now, but I'm not certain it's the drug. It could be due to hormonal, since it's period time for me.
I've been experiencing some nerve pains recently, which tend to occur somewhat less frequently, and yesterday I felt a little puffy in the face, which is not a usual thing for me. That could be allergies affecting me, though, since my throat is a little hoarse today and I started sneezing and sniffling a bit yesterday. My allergies are LOTS better this year, though, compared to others, thanks to my years of desensitization injections. Finally getting the payoff for all that!
IBS is behaving nicely lately and I am able to feel kind of human overall these days. (That's the real test for how I'm doing.) It's been a couple weeks now and I am okay, for the most part. Various symptoms come and go, as usual, but at least I'm no longer taking sleeping meds AND a muscle relaxant - just the one drug now.
The warm weather is helping me to move around more. I'm taking more walks and getting more exercise, but I'm still having a hard time in between bouts of energy, when I feel worn out and confused. Hopefully the ups and downs will start evening out soon. I am having trouble getting the pacing right and am still overdoing when I am able to. :P I need to update my WRAP, too, since so much has changed since I last updated it. I'll post a link to that once it's been revised.
According to several web pages about this, I need to rest and relax more. (Unwindsday, here I come!) I have been getting much better sleep since getting off Savella, though I've had some odd back-of-the-neck pains that wake me during the night. It's a stiffness kind of pain that restricts my movement and I have a hard time getting comfortable. I don't know what that's about. It's a bit scary at the time. Everything seems more scary in the middle of the night for some reason. Maybe my brain is not ready to think properly then.
I am going to visit my new rheumatologist this Thursday to find out all my lab test results (12 tests) and see if we can learn anything from them about why I'm experiencing Fibromyalgia. I'm also going to let her know how I'm doing on the new drug she prescribed, Cycolbenzaprine (generic for Flexeril).
With the new medicine, things started out a bit weird - the first night I used it, I woke up about an hour after bedtime, wide awake, and was just this side of believing that I might realistically die that night. I have no idea why. Perhaps my heart was racing or something, but I felt somewhat out of control, different. I lay there awake, pondering the impacts of death. It was very weird and it's stupid to think about now, after the fact, but I did really believe it. Finally, after some time, I convinced myself that perhaps this flavor of crazy was brought to me by my change in meds, and that the side effect may be something mental. I fell asleep and was fine in the morning. I lived to laugh about it.
Mostly I think the new drug is fine, it just made me feel a little anxious or something like that the first few days. I've been having headaches, too, almost daily for several days now, but I'm not certain it's the drug. It could be due to hormonal, since it's period time for me.
I've been experiencing some nerve pains recently, which tend to occur somewhat less frequently, and yesterday I felt a little puffy in the face, which is not a usual thing for me. That could be allergies affecting me, though, since my throat is a little hoarse today and I started sneezing and sniffling a bit yesterday. My allergies are LOTS better this year, though, compared to others, thanks to my years of desensitization injections. Finally getting the payoff for all that!
IBS is behaving nicely lately and I am able to feel kind of human overall these days. (That's the real test for how I'm doing.) It's been a couple weeks now and I am okay, for the most part. Various symptoms come and go, as usual, but at least I'm no longer taking sleeping meds AND a muscle relaxant - just the one drug now.
The warm weather is helping me to move around more. I'm taking more walks and getting more exercise, but I'm still having a hard time in between bouts of energy, when I feel worn out and confused. Hopefully the ups and downs will start evening out soon. I am having trouble getting the pacing right and am still overdoing when I am able to. :P I need to update my WRAP, too, since so much has changed since I last updated it. I'll post a link to that once it's been revised.
Sunday, March 11, 2012
I am Off Savella!
This is just a quick update to let you all know that I managed to successfully wean off Savella on my own, during four weeks of graduated dose reductions. I have been Savella-free for several days now and all seems to have gone okay.
I have been feeling much better off it than on. I've been sleeping a LOT better lately, the nasal bleeding has stopped completely, I am not getting as many headaches, and my heart beat seems a bit more reasonable and less distracting. I'm not sure the pulse is much lower, but it will probably get better with time. I don't get the distracting thumping as much, either.
As for my blood pressure, I'm going to get that re-checked this Friday at my follow-up visit to my general doctor. Hopefully it's back to normal by now, since the symptoms of high blood pressure seem to have gone away. I'll report the numbers as soon as I get them.
I am going to see my new Fibro doctor this Tuesday, since my last one has used up all of my patience and trust. She will be managing my fibro symptoms on a regular basis and prescribing the maintenance medications as needed as well. (Although I'm off Savella, I still need to take other medications.)
As for picking a Lyme specialist, I haven't decided anything on that just yet. I'm still researching my options.
I have been feeling much better off it than on. I've been sleeping a LOT better lately, the nasal bleeding has stopped completely, I am not getting as many headaches, and my heart beat seems a bit more reasonable and less distracting. I'm not sure the pulse is much lower, but it will probably get better with time. I don't get the distracting thumping as much, either.
As for my blood pressure, I'm going to get that re-checked this Friday at my follow-up visit to my general doctor. Hopefully it's back to normal by now, since the symptoms of high blood pressure seem to have gone away. I'll report the numbers as soon as I get them.
I am going to see my new Fibro doctor this Tuesday, since my last one has used up all of my patience and trust. She will be managing my fibro symptoms on a regular basis and prescribing the maintenance medications as needed as well. (Although I'm off Savella, I still need to take other medications.)
As for picking a Lyme specialist, I haven't decided anything on that just yet. I'm still researching my options.
Tuesday, February 28, 2012
Terrible Weekend
I finally made it into work today after spending the last three and a half days in bed. I am tempted to think I jinxed myself with my last post, turning my frown upside-down on Friday. Something happened to me right after lunch Friday and it was just a very bad weekend-plus-a-day for me.
It started with explosive diarrhea. (Hey, shit happens. It's my forum and I'm going to be frank here, so I hope you can handle it. That's about as TMI as I'm going to get for this one, though.) I spent a lot of time in the bathroom Friday afternoon dealing with that. I finished up my work day and drove myself home, exhausted. Once I got home, I was relieved and planted myself directly into bed with all the covers over me in my clothes. I was cold and I couldn't seem to warm up, though I don't think I had a fever because I never felt hot or unbearably chilled, just cold. I probably warmed up some, though, because my chest hived out in a rash.
For a minute I thought I was allergic to something I ate - maybe soy, maybe sushi - but after I thought about it, I realized that I get heat rashes like this. I have cholinergic urticaria. My stomach felt beaten up so I didn't eat dinner.
Saturday morning, I tried breakfast, thinking I might need some nutrition, but I developed crampy, abdominal pain soon after eating, so I avoided eating much Saturday and just continued to rest and drink water while staying social with online activities via my smartphone. I had a small, simple dinner of peanut butter and banana on bread, which was small and not too hard on my belly.
Sunday, I woke up with a headache. It was the icky kind that I had a few weeks back, when my blood pressure was through the roof and my nose was leaking blood because it apparently had nowhere else to go but out a hole in my head. I wasn't sure what to think. My belly was a bit better, but my head wanted to pull me into the center of the Earth and flatten me. I'm almost finished weaning off Savella, so I didn't know if it was a withdrawal symptom, a side effect from still being on it, or unrelated to it and maybe all about Friday's possibly tainted lunch.
I was useless and laid in bed. I couldn't even imagine reading or looking at my phone for fun activities. I was miserable. I tried to relax and sleep. I managed to nap, but only after those all-too-familiar starts to fully awakened consciousness, even before ever falling asleep. This was happening in the pre-sleep stage. I don't know what that is. There was no noise, no dream, no reason for these moments that I could understand. I guess something in my body really flips out when I try to sleep when it doesn't want me to. When I got to sleep, I dreamt something irritating that made me feel a little cranky and remember awakening suddenly - for nothing. Again, there was no startling moment in the dream or any noises to wake me. It was all some internal burst of WAKE THE HELL UP NOW that I cannot comprehend.
Anyway, by Sunday night, I was able to enjoy a great home-cooked dinner made by my husband and didn't feel sick to my stomach afterwards. At least I had that victory. I also thought my headache was on its way out, but it seems to feel temporarily better WHILE eating, but then comes back again after I'm finished eating. What is that?
At any rate, I hoped Monday morning I'd be all set without a headache and ready to work. No dice. Woke up feeling awful! I gave up hope of going to work when I realized I couldn't fathom moving from the bed. I wanted my headache to fade away, but it was very slow to do so and stuck around through the night.
This morning, the headache was small enough for me to move around a lot better, so I went to work. I wasn't quite myself, though, but I notice that being around people helps me forget a bit and allows me to become distracted by work or personal chit chat or stories. I also noticed that my voice decided to leave me. If the past is any indication, my vocal cords atrophied from disuse over the past three days and now I sound like some kind of elderly smoker. I will try not to let it bother me and just keep using it, so it can strengthen. In the past, I mentioned how awful my voice had gotten but people always say they don't notice, so I guess I shouldn't worry. Could be worse, I guess.
So, I'm on the mend from whatever the heck happened Friday, wasted a weekend resting and not having any quality time with my husband, but at least didn't have to take more than one day off work to deal with it. I'm also progressing toward my last dose of Savella, which will be on the morning of March 9th, if all goes well. In addition, I've been learning lots about Lyme Disease and a possible connection to Fibromyalgia, and will be posting more about that soon. There is lots to learn, but it is worth looking into. If Lyme is causing my Fibro, I can at least try the treatment that has cured many already. Stay tuned for more on that.
Thanks for sticking with me through this detailed post!
It started with explosive diarrhea. (Hey, shit happens. It's my forum and I'm going to be frank here, so I hope you can handle it. That's about as TMI as I'm going to get for this one, though.) I spent a lot of time in the bathroom Friday afternoon dealing with that. I finished up my work day and drove myself home, exhausted. Once I got home, I was relieved and planted myself directly into bed with all the covers over me in my clothes. I was cold and I couldn't seem to warm up, though I don't think I had a fever because I never felt hot or unbearably chilled, just cold. I probably warmed up some, though, because my chest hived out in a rash.
 |
| Cholinergic urticaria rash on my chest, from my own body heat |
For a minute I thought I was allergic to something I ate - maybe soy, maybe sushi - but after I thought about it, I realized that I get heat rashes like this. I have cholinergic urticaria. My stomach felt beaten up so I didn't eat dinner.
Saturday morning, I tried breakfast, thinking I might need some nutrition, but I developed crampy, abdominal pain soon after eating, so I avoided eating much Saturday and just continued to rest and drink water while staying social with online activities via my smartphone. I had a small, simple dinner of peanut butter and banana on bread, which was small and not too hard on my belly.
Sunday, I woke up with a headache. It was the icky kind that I had a few weeks back, when my blood pressure was through the roof and my nose was leaking blood because it apparently had nowhere else to go but out a hole in my head. I wasn't sure what to think. My belly was a bit better, but my head wanted to pull me into the center of the Earth and flatten me. I'm almost finished weaning off Savella, so I didn't know if it was a withdrawal symptom, a side effect from still being on it, or unrelated to it and maybe all about Friday's possibly tainted lunch.
I was useless and laid in bed. I couldn't even imagine reading or looking at my phone for fun activities. I was miserable. I tried to relax and sleep. I managed to nap, but only after those all-too-familiar starts to fully awakened consciousness, even before ever falling asleep. This was happening in the pre-sleep stage. I don't know what that is. There was no noise, no dream, no reason for these moments that I could understand. I guess something in my body really flips out when I try to sleep when it doesn't want me to. When I got to sleep, I dreamt something irritating that made me feel a little cranky and remember awakening suddenly - for nothing. Again, there was no startling moment in the dream or any noises to wake me. It was all some internal burst of WAKE THE HELL UP NOW that I cannot comprehend.
Anyway, by Sunday night, I was able to enjoy a great home-cooked dinner made by my husband and didn't feel sick to my stomach afterwards. At least I had that victory. I also thought my headache was on its way out, but it seems to feel temporarily better WHILE eating, but then comes back again after I'm finished eating. What is that?
At any rate, I hoped Monday morning I'd be all set without a headache and ready to work. No dice. Woke up feeling awful! I gave up hope of going to work when I realized I couldn't fathom moving from the bed. I wanted my headache to fade away, but it was very slow to do so and stuck around through the night.
This morning, the headache was small enough for me to move around a lot better, so I went to work. I wasn't quite myself, though, but I notice that being around people helps me forget a bit and allows me to become distracted by work or personal chit chat or stories. I also noticed that my voice decided to leave me. If the past is any indication, my vocal cords atrophied from disuse over the past three days and now I sound like some kind of elderly smoker. I will try not to let it bother me and just keep using it, so it can strengthen. In the past, I mentioned how awful my voice had gotten but people always say they don't notice, so I guess I shouldn't worry. Could be worse, I guess.
So, I'm on the mend from whatever the heck happened Friday, wasted a weekend resting and not having any quality time with my husband, but at least didn't have to take more than one day off work to deal with it. I'm also progressing toward my last dose of Savella, which will be on the morning of March 9th, if all goes well. In addition, I've been learning lots about Lyme Disease and a possible connection to Fibromyalgia, and will be posting more about that soon. There is lots to learn, but it is worth looking into. If Lyme is causing my Fibro, I can at least try the treatment that has cured many already. Stay tuned for more on that.
Thanks for sticking with me through this detailed post!
Friday, February 24, 2012
Weaning off Savella and a New Doctor Found
I've completed the first two weeks at the first stage of lower dose of Savella for my weaning off: one tablet per day. Yesterday, I started the next and final stage: a half tablet per day for 14 more days. I took a few more half-tabs with me to work, just in case any crazy discontinuation symptoms occurred, but I was fine.
I have done a bit of research on discontinuing SNRIs and learned that some have longer half-lives than others. Pristiq (similar to Effexor), which I quit taking last July, when I started on Savella and suffered lots of terrible withdrawal symptoms, has a short half-life. Some people suffer withdrawals if they miss a dose of some SNRIs because they have such short half-lives. My initial research led me to believe that maybe Savella (milnacipran) had a longer half-life than Pristiq, thus it isn't causing many discontinuation symptoms for me. However, it seems it's got a very short half-life, but things are more complex than that, based on what this study indicates. Gee, I sure wish someone who'd gone to medical school could have briefed me on some of this!
I actually feel better now that I'm getting off this evil drug. I'm sleeping most or all of the night, though I still get very tired for much of the afternoon and evening. My nasal bleeding is greatly reduced and I've even had days of no blood at all! YAY! I'm also only dealing with pretty tame pain levels (for me) so I'm smiling a lot more. I even turned my frown upside down at work.
My heart rate still seems high sometimes, but I haven't measured my pulse officially quite yet. I assume my blood pressure is at or near normal levels again, but I won't know until I get it tested at the follow-up appointment with my general doctor. Headaches have been largely absent as well, which I'm thrilled about. I still have symptoms, of course, but they're not absolutely miserable lately, and it seems to match up with the lower Savella doses.
I'm hoping this is all a positive sign that I'll be better off SNRIs than on. Maybe it's a matter of getting used to the everyday Fibromyalgia symptoms and learning to avoid the flare triggers. Maybe regular Fibro without a bunch of additional medicinal side effects feels good by comparison. It's been almost exactly four years now since my official diagnosis of Fibromyalgia and I have learned a lot about what my body is telling me... and I am still learning to listen to what it's saying.
In addition to the above good news, I also decided on my next fibro doctor to try, based on a recommendation. My appointment is set and I'm going to see if she's a good fit for me. This doctor's office is actually farther away than I was hoping, especially since I expect to be going there frequently for regular follow-ups, but I've heard good things. Also, the many other possible local doctors I started to do research on had reviews that were scaring me about some of the same problems I'm trying to escape. Picking my next doctor was turning out to be a major project. I'm also racing to beat my expiring prescriptions, since I fired my last doctor. I don't know if he'll refill them but we'll find out, I guess.
Anyway, the same person who recommended the doctor I'm seeing soon also recommended a wonderful gastroenterologist to me last year, so I'm hoping for the best. I'll be sure to report to you all on how my first appointment goes.
Hope things are going well for you all!
I have done a bit of research on discontinuing SNRIs and learned that some have longer half-lives than others. Pristiq (similar to Effexor), which I quit taking last July, when I started on Savella and suffered lots of terrible withdrawal symptoms, has a short half-life. Some people suffer withdrawals if they miss a dose of some SNRIs because they have such short half-lives. My initial research led me to believe that maybe Savella (milnacipran) had a longer half-life than Pristiq, thus it isn't causing many discontinuation symptoms for me. However, it seems it's got a very short half-life, but things are more complex than that, based on what this study indicates. Gee, I sure wish someone who'd gone to medical school could have briefed me on some of this!
I actually feel better now that I'm getting off this evil drug. I'm sleeping most or all of the night, though I still get very tired for much of the afternoon and evening. My nasal bleeding is greatly reduced and I've even had days of no blood at all! YAY! I'm also only dealing with pretty tame pain levels (for me) so I'm smiling a lot more. I even turned my frown upside down at work.
 |
| I created and ordered this magnet to indicate my mood to my coworkers. |
My heart rate still seems high sometimes, but I haven't measured my pulse officially quite yet. I assume my blood pressure is at or near normal levels again, but I won't know until I get it tested at the follow-up appointment with my general doctor. Headaches have been largely absent as well, which I'm thrilled about. I still have symptoms, of course, but they're not absolutely miserable lately, and it seems to match up with the lower Savella doses.
I'm hoping this is all a positive sign that I'll be better off SNRIs than on. Maybe it's a matter of getting used to the everyday Fibromyalgia symptoms and learning to avoid the flare triggers. Maybe regular Fibro without a bunch of additional medicinal side effects feels good by comparison. It's been almost exactly four years now since my official diagnosis of Fibromyalgia and I have learned a lot about what my body is telling me... and I am still learning to listen to what it's saying.
In addition to the above good news, I also decided on my next fibro doctor to try, based on a recommendation. My appointment is set and I'm going to see if she's a good fit for me. This doctor's office is actually farther away than I was hoping, especially since I expect to be going there frequently for regular follow-ups, but I've heard good things. Also, the many other possible local doctors I started to do research on had reviews that were scaring me about some of the same problems I'm trying to escape. Picking my next doctor was turning out to be a major project. I'm also racing to beat my expiring prescriptions, since I fired my last doctor. I don't know if he'll refill them but we'll find out, I guess.
Anyway, the same person who recommended the doctor I'm seeing soon also recommended a wonderful gastroenterologist to me last year, so I'm hoping for the best. I'll be sure to report to you all on how my first appointment goes.
Hope things are going well for you all!
Monday, February 13, 2012
The Late Call Back as Weaning Continues
Just got a call from my fibro doctor's office - one of the staff told me this: The doctor "tried to call Friday" so he's having her call and tell me this. (This is bullshit. I only have a cell phone and there is no record of ANYONE calling my number Friday, much less any message. If he tried, he failed to dial my number.)
The doctor recommends taking two half-tablets every day (halving the full dose a little differently than I'm doing by taking one full tablet a day for two weeks) then if side effects continue, he will switch me to Cymbalta. At this point I lost control and calmly told the girl this was not helpful at all, that this isn't the first time the doctor has let me down when I needed him, and that I cannot trust him and need to see a new doctor.
He should already have in his records that I tried Cymbalta and couldn't tolerate the severe nausea. I'm not going on it again. I'm determined to get off SNRIs for a bit so I can judge if they are making any positive impact at all or not. Why bother with side effects if the main effects aren't even being relieved? Screw it.
My only problem now is I need to scramble to find a different doctor or else I'll run out of other prescriptions I need. I'm having a hard time finding someone close enough and good enough to start over with. Those of you with fibro out there know how hard it is to find a new doctor. It's like a new job. Ugh.
The good news is that, since reducing to a half dose of Savella every day, my headaches have been better (not gone, but lots, lots better), my nose hasn't been bleeding as much, and I've been getting some sleep. I'm still on the first two weeks of weaning, though, and when that's up and I reduce the dose again, we'll see if anything else changes - good or bad. Stay tuned.
The doctor recommends taking two half-tablets every day (halving the full dose a little differently than I'm doing by taking one full tablet a day for two weeks) then if side effects continue, he will switch me to Cymbalta. At this point I lost control and calmly told the girl this was not helpful at all, that this isn't the first time the doctor has let me down when I needed him, and that I cannot trust him and need to see a new doctor.
He should already have in his records that I tried Cymbalta and couldn't tolerate the severe nausea. I'm not going on it again. I'm determined to get off SNRIs for a bit so I can judge if they are making any positive impact at all or not. Why bother with side effects if the main effects aren't even being relieved? Screw it.
My only problem now is I need to scramble to find a different doctor or else I'll run out of other prescriptions I need. I'm having a hard time finding someone close enough and good enough to start over with. Those of you with fibro out there know how hard it is to find a new doctor. It's like a new job. Ugh.
The good news is that, since reducing to a half dose of Savella every day, my headaches have been better (not gone, but lots, lots better), my nose hasn't been bleeding as much, and I've been getting some sleep. I'm still on the first two weeks of weaning, though, and when that's up and I reduce the dose again, we'll see if anything else changes - good or bad. Stay tuned.
Thursday, February 9, 2012
I'm Weaning Off Savella
With two calls into my fibro doctor and still no response, I've made the decision to wean off Savella. I've also decided to fire my fibro doctor and find a different one to take care of me. If you remember how my start with Savella went, you'll see why I'm not expecting much from him this time around. I'm through with his nonsense.
After doing some drug interaction research after Monday's appointment, I learned that the Sinex nasal decongestant spray I've recently been taking doesn't play well with Savella. According to drugs.com, there is a "moderately clinically significantly" interaction between these two drugs. Here's the exact interaction wording:
As you can see above, there is a serious risk of blood pressure problems and pulse and warrants getting off Savella and SNRIs altogether, which is my current plan. Again, I have learned all of this without any help from my fibro doctor. My fibro doctor was the one who told me to try Sinex for the nasal congestion I mentioned during my last appointment. What's more, he didn't tell me that it should not be used for more than just a few days - this I learned from my primary care doctor on Monday. I'd been taking it for a couple of weeks. This is the last straw. I can't trust him.
Knowing all this now, it is not much of a surprise to me that I am feeling some relief after having stopped taking Sinex since Monday's appointment, and having skipped my first dose of Savella last night. My head feels much better today and I actually slept for a change!
Thanks to others who have had to wean off SNRIs and shared the experience online, I have developed a month-long plan to wean off Savella.
With this plan worked out and symptoms seeming to calm down a bit now, I feel a bit more in control of my body's chaotic messages. This is, of course, not to mention all the "usual" fibro symptoms and pains that I can't escape. My hope is that, with fewer side effects complicating things, my fibro might be easier to manage.
Things are still stressful, though, because there is a lot going on at work as well as at home. Lots of projects are coming fast and furious at work because the market is changing and it requires action. As a member of my company's IT team, I get to be affected by all of these sudden and very urgent changes, even when they turn out to be reversed later due to new information. It's already happened and it will happen again. I just need to deal with that. It's going to be a long year.
A family member's health, though, is also suddenly very poor, but we aren't exactly sure of the diagnosis yet. He has his own chronic health problems, so the implications of his new symptoms are serious and worrisome. I am doing my best to stay strong and take care of his needs while my health seems to stabilize, though I also don't know how my body will handle being off SNRIs long-term.
My schedule and fibro doesn't allow me to do much of what needs to be done at home, much less handle all these additional challenges. I don't have much choice, though, but to try to keep calm and carry on, so that is what I must do.
After doing some drug interaction research after Monday's appointment, I learned that the Sinex nasal decongestant spray I've recently been taking doesn't play well with Savella. According to drugs.com, there is a "moderately clinically significantly" interaction between these two drugs. Here's the exact interaction wording:
 |
| Be careful with SNRIs and other drugs that can affect blood pressure and heart function! |
As you can see above, there is a serious risk of blood pressure problems and pulse and warrants getting off Savella and SNRIs altogether, which is my current plan. Again, I have learned all of this without any help from my fibro doctor. My fibro doctor was the one who told me to try Sinex for the nasal congestion I mentioned during my last appointment. What's more, he didn't tell me that it should not be used for more than just a few days - this I learned from my primary care doctor on Monday. I'd been taking it for a couple of weeks. This is the last straw. I can't trust him.
Knowing all this now, it is not much of a surprise to me that I am feeling some relief after having stopped taking Sinex since Monday's appointment, and having skipped my first dose of Savella last night. My head feels much better today and I actually slept for a change!
Thanks to others who have had to wean off SNRIs and shared the experience online, I have developed a month-long plan to wean off Savella.
The full regular dose of Savella is one 50mg tablet, twice a day, resulting in a 100mg per day dosage. Starting last night, I will eliminate my bedtime tablet each day for two weeks, resulting in a 50mg per day dosage. Then I will eliminate one morning dose every two days for another two weeks, resulting in a 25mg per two-day dosage. It's not perfect, but I'm hesitant about cutting the pills in half right now, as I have not been able to confirm that it's a safe thing to do. One person reported a worsening of heart problems after taking a cut Savella pill and warned against it. I will continue to look into this as necessary and watch for those odd withdrawal symptoms. If withdrawal (or "discontinuation") symptoms become problematic, I will try increasing dosage a bit to reach a happy medium as my body adjusts. (If you can point me to something about this on the web, please leave me a comment about it!)
With this plan worked out and symptoms seeming to calm down a bit now, I feel a bit more in control of my body's chaotic messages. This is, of course, not to mention all the "usual" fibro symptoms and pains that I can't escape. My hope is that, with fewer side effects complicating things, my fibro might be easier to manage.
Things are still stressful, though, because there is a lot going on at work as well as at home. Lots of projects are coming fast and furious at work because the market is changing and it requires action. As a member of my company's IT team, I get to be affected by all of these sudden and very urgent changes, even when they turn out to be reversed later due to new information. It's already happened and it will happen again. I just need to deal with that. It's going to be a long year.
A family member's health, though, is also suddenly very poor, but we aren't exactly sure of the diagnosis yet. He has his own chronic health problems, so the implications of his new symptoms are serious and worrisome. I am doing my best to stay strong and take care of his needs while my health seems to stabilize, though I also don't know how my body will handle being off SNRIs long-term.
My schedule and fibro doesn't allow me to do much of what needs to be done at home, much less handle all these additional challenges. I don't have much choice, though, but to try to keep calm and carry on, so that is what I must do.
Monday, February 6, 2012
I'm Blaming Savella
I just got back from an appointment with my primary doctor to address my recent five-day headache and neck pains, sinus congestion, and nosebleeds, as well as crappy sleep that's been going on since Christmas/New Year's.
So yesterday, on day four of this episode, I noticed the head and neck pains have been choosing either left or right, and remain limited to that side at several points on my head: temple, just behind my ear, at the base of my skull, and on my face near my eye or nose. At any given time, the pain will pick one or more of these locations on one side of my head, and it's been worse at night and in the mornings, with neck pain being very prominent while lying down in bed. I reflected on this all during the evening, while also noticing that my pain was becoming almost unbearable.
In addition, my nasal congestion issues have been continuing since December 26th, when I thought I'd caught a mild cold, but managed to keep it from spreading to my husband, which seems impossible. Since then, I've had multiple sleepless nights and many nights of very interrupted and restless sleep. I've been a zombie version of myself at times and crankiest when morning brings nothing but severe pain and fatigue.
Finally, the nosebleeds have gone from a touch of blood here and there in the tissue to full-blown bloody sprays and red-marker bloody tissue events, including the one from last week that happened at work.
At my last appointment with my fibromyalgia specialist, I brought most of this up, but I hadn't had the headache pattern down then, so it wasn't discussed. I also mentioned the ridiculously high heart rate I've been having, thanks to Savella, which I started last July. This is a well-known side effect of this drug, and although he measured my pulse in the office at 104 (normal is about 60), he didn't seem worried about it. I half-joked that I was using up years of my life to speed up my heart rate. He laughed. I decided not to worry, especially since my blood pressure that day, although somewhat higher that normal (I have never had high blood pressure), was still in the normal range. He reassured me that it would be okay and this was just an annoyance.
Today I learned otherwise. My blood pressure was taken at my primary doctor's office on both arms. The first one was about 130 over something. The other arm was even higher. Then the doctor came in to talk to me and took it again, himself. It was 150 over 90. WHAT?! Typical normal blood pressure readings for me have been around 100 or 110 over something. Here are some guidelines about what's normal.
Here's what I know about nosebleeds with headache from searching online yesterday: it can be caused by high blood pressure, among other things. I didn't, for a second, think that was actually the one causing my symptoms. Little did I realize, that my body's equilibrium had quickly gotten off track. As the title of this post indicates, I'm blaming Savella.
I didn't think Savella would be a problem once I'd switched to it (and gotten past all the crap withdrawals of the switch). Then I started having weird facial flushing. I figured those would stop, but they haven't. Then the heart rate increased. Then the sleep just stopped. Now my blood pressure is skyrocketing. I'm even having more tremors from this maniacal stuff. Fuck Savella! My head is exploding pain and blood and I can't sleep. I don't even know if it's helping any of my fibro symptoms anymore. I want off this crazy drug.
I called my fibro doctor and left a message with the someone there, asking my doctor to switch me to something else immediately. If I have to, I'll wean off this SNRI and just be off antidepressants, though I know they do help balance out some of the unbalanced things with fibro. However, I will not take balancing of one thing and unbalancing of others. That's crap.
Stay tuned for more as things develop.
Oh, forgot to mention that the doctor prescribed Amoxicillin for the nasal congestion, just in case it's infected. He didn't see anything that indicated infection, but it's worth a shot, since it's been over a month of this stuffy weirdness. We'll see how that goes. I have to take a pill every 8 hours for 10 days.
So yesterday, on day four of this episode, I noticed the head and neck pains have been choosing either left or right, and remain limited to that side at several points on my head: temple, just behind my ear, at the base of my skull, and on my face near my eye or nose. At any given time, the pain will pick one or more of these locations on one side of my head, and it's been worse at night and in the mornings, with neck pain being very prominent while lying down in bed. I reflected on this all during the evening, while also noticing that my pain was becoming almost unbearable.
In addition, my nasal congestion issues have been continuing since December 26th, when I thought I'd caught a mild cold, but managed to keep it from spreading to my husband, which seems impossible. Since then, I've had multiple sleepless nights and many nights of very interrupted and restless sleep. I've been a zombie version of myself at times and crankiest when morning brings nothing but severe pain and fatigue.
Finally, the nosebleeds have gone from a touch of blood here and there in the tissue to full-blown bloody sprays and red-marker bloody tissue events, including the one from last week that happened at work.
At my last appointment with my fibromyalgia specialist, I brought most of this up, but I hadn't had the headache pattern down then, so it wasn't discussed. I also mentioned the ridiculously high heart rate I've been having, thanks to Savella, which I started last July. This is a well-known side effect of this drug, and although he measured my pulse in the office at 104 (normal is about 60), he didn't seem worried about it. I half-joked that I was using up years of my life to speed up my heart rate. He laughed. I decided not to worry, especially since my blood pressure that day, although somewhat higher that normal (I have never had high blood pressure), was still in the normal range. He reassured me that it would be okay and this was just an annoyance.
Today I learned otherwise. My blood pressure was taken at my primary doctor's office on both arms. The first one was about 130 over something. The other arm was even higher. Then the doctor came in to talk to me and took it again, himself. It was 150 over 90. WHAT?! Typical normal blood pressure readings for me have been around 100 or 110 over something. Here are some guidelines about what's normal.
Here's what I know about nosebleeds with headache from searching online yesterday: it can be caused by high blood pressure, among other things. I didn't, for a second, think that was actually the one causing my symptoms. Little did I realize, that my body's equilibrium had quickly gotten off track. As the title of this post indicates, I'm blaming Savella.
I didn't think Savella would be a problem once I'd switched to it (and gotten past all the crap withdrawals of the switch). Then I started having weird facial flushing. I figured those would stop, but they haven't. Then the heart rate increased. Then the sleep just stopped. Now my blood pressure is skyrocketing. I'm even having more tremors from this maniacal stuff. Fuck Savella! My head is exploding pain and blood and I can't sleep. I don't even know if it's helping any of my fibro symptoms anymore. I want off this crazy drug.
I called my fibro doctor and left a message with the someone there, asking my doctor to switch me to something else immediately. If I have to, I'll wean off this SNRI and just be off antidepressants, though I know they do help balance out some of the unbalanced things with fibro. However, I will not take balancing of one thing and unbalancing of others. That's crap.
Stay tuned for more as things develop.
Oh, forgot to mention that the doctor prescribed Amoxicillin for the nasal congestion, just in case it's infected. He didn't see anything that indicated infection, but it's worth a shot, since it's been over a month of this stuffy weirdness. We'll see how that goes. I have to take a pill every 8 hours for 10 days.
Wednesday, February 1, 2012
Feeling a Bit Better
Feeling Lame Update:
As you may have read in my previous post, yesterday, I was a hot mess. I'm not skipping along merrily just yet today, but I did manage to get some sleep last night. Although my back is still hurting quite a bit, and I had more bloody nose mess in the morning, I did not have any more bleeding for the rest of the day (amazingly), and I did not have asthma issues at work today.
I may be headed for better days soon. I've been making a real effort to eat healthier and have been managing to get A's in Calorie Camp because of it, so hopefully that effort is helping something to go right. Not sure what made it go so wrong yesterday, but such is the life of a fibromite - always unpredictable. Oh, bonus: I lost 3 pounds as of my weigh in this morning. Yay me!
I'm going to continue hoping for better days now. Thanks for reading. I hope you are having a good day.
As you may have read in my previous post, yesterday, I was a hot mess. I'm not skipping along merrily just yet today, but I did manage to get some sleep last night. Although my back is still hurting quite a bit, and I had more bloody nose mess in the morning, I did not have any more bleeding for the rest of the day (amazingly), and I did not have asthma issues at work today.
I may be headed for better days soon. I've been making a real effort to eat healthier and have been managing to get A's in Calorie Camp because of it, so hopefully that effort is helping something to go right. Not sure what made it go so wrong yesterday, but such is the life of a fibromite - always unpredictable. Oh, bonus: I lost 3 pounds as of my weigh in this morning. Yay me!
I'm going to continue hoping for better days now. Thanks for reading. I hope you are having a good day.
Tuesday, January 31, 2012
Feeling Lame
Sorry to be the bearer of bad news, yet again, but despite my best efforts, my sleep has been ridiculously scant and superficial for the past month, even when I use the new ear plugs. I still like them for tuning out the noise, but apparently noise is not the only trigger that wakes me.
For instance, the other night, I slept and dreamt, but woke up suddenly in the middle - well, at the apparent sudden END, I guess - of each dream, for no apparent reason. No noise, no gasping for air, no falling or startle dream, nothing. One second, in a creative story of my mind, next minute wide, fucking awake. This must have happened about a hundred times that night.
Each night is different, too. Last night, for instance, I don't remember dreaming, but I slept for a few hours before my brain decided I shouldn't sleep for the rest of the night. I woke up around 3am and finally got up after 4am to address some of the things popping into my mind. I'm tired as all hell at the moment. In fact, I left work early today because I couldn't function. It's unseasonably warm today (60 degrees F for January in Chicagoland is very unusual) and that may or may not have anything to do with the fact that today my asthma has been the worst it's been in months, that I can recall. I have been coughing and trying to breathe for hours, then noticed I was feeling faint, probably from the lack of oxygen getting to my brain.
On top of that my face flushed up and felt like it was burning up (this is still about a daily occurrence) AND my nose started bleeding, right there in the office (another daily occurrence). It was too much and I was starting to sense microsleeps occurring due to my sleep deficit. I carefully drove home and I'm about to try and nap some of this crap away. Savella is already making my heart beat way too fast and hard (100+ beats per minute at rest is not normal) but the rescue inhaler also makes me shakey and screw it up even more.
In addition to the above, my lower back is having spasms for the past few days, despite my increased muscle relaxants, stretching, and a great massage treatment just yesterday. However, the pain from that pales next to the nerve pain jolts I've been getting in the back of my right thigh for the past several days. It's maddeningly sudden and severe every time. It makes me jump and/or gasp involuntarily, and I'm pretty good and not bringing attention to my pains in front of others. I've been calling this sciatica, but really I don't know what it is. I've been told my piriformis muscle is likely impinging on it, so I stretch when it occurs, to try to prevent further jolts. It's difficult to say whether anything helps this - as it's so intermittent. I get a similar pain in my forearm as well, and that's been acting up lately, too.
I wanted to write this all down while I'm feeling it so I can give my future self an accurate description of what went on today. This is about all I can handle at the moment. Stay tuned for an update of how great I'm feeling later (hopefully). I will have better days. I will have better days. I will have better days...
For instance, the other night, I slept and dreamt, but woke up suddenly in the middle - well, at the apparent sudden END, I guess - of each dream, for no apparent reason. No noise, no gasping for air, no falling or startle dream, nothing. One second, in a creative story of my mind, next minute wide, fucking awake. This must have happened about a hundred times that night.
Each night is different, too. Last night, for instance, I don't remember dreaming, but I slept for a few hours before my brain decided I shouldn't sleep for the rest of the night. I woke up around 3am and finally got up after 4am to address some of the things popping into my mind. I'm tired as all hell at the moment. In fact, I left work early today because I couldn't function. It's unseasonably warm today (60 degrees F for January in Chicagoland is very unusual) and that may or may not have anything to do with the fact that today my asthma has been the worst it's been in months, that I can recall. I have been coughing and trying to breathe for hours, then noticed I was feeling faint, probably from the lack of oxygen getting to my brain.
On top of that my face flushed up and felt like it was burning up (this is still about a daily occurrence) AND my nose started bleeding, right there in the office (another daily occurrence). It was too much and I was starting to sense microsleeps occurring due to my sleep deficit. I carefully drove home and I'm about to try and nap some of this crap away. Savella is already making my heart beat way too fast and hard (100+ beats per minute at rest is not normal) but the rescue inhaler also makes me shakey and screw it up even more.
In addition to the above, my lower back is having spasms for the past few days, despite my increased muscle relaxants, stretching, and a great massage treatment just yesterday. However, the pain from that pales next to the nerve pain jolts I've been getting in the back of my right thigh for the past several days. It's maddeningly sudden and severe every time. It makes me jump and/or gasp involuntarily, and I'm pretty good and not bringing attention to my pains in front of others. I've been calling this sciatica, but really I don't know what it is. I've been told my piriformis muscle is likely impinging on it, so I stretch when it occurs, to try to prevent further jolts. It's difficult to say whether anything helps this - as it's so intermittent. I get a similar pain in my forearm as well, and that's been acting up lately, too.
I wanted to write this all down while I'm feeling it so I can give my future self an accurate description of what went on today. This is about all I can handle at the moment. Stay tuned for an update of how great I'm feeling later (hopefully). I will have better days. I will have better days. I will have better days...
Sunday, January 8, 2012
I Don't Mind the Snormy Nights Anymore
The last few weeks have been interesting for me. Don and I took the last two weeks of the year off work. The first week, we traveled to Michigan for a short beercation, visiting Dark Horse, Arcadia Ales, and Three Floyds in Indiana, while on the way back to Illinois. It was a great time, but I started having some trouble sleeping.
The week after that, I caught some sort of mild cold and continued to have increasingly more difficulty getting and staying asleep each night.
Just this week, a day after returning to work, I came down with some sort of stomach virus that had me weak, in pain, and exhausted from being awake for several hours each night.
What's worse, Don is a snorer. There is a running joke at our house that, whenever I hear him snoring a lot during the previous night, the next day I complain that last night was very "snormy".
He seems to sleep pretty well, despite his snoring, but I certainly don't, especially when flare ups or other things are keeping me awake. As a fibromite, I am never fully rested, even if I manage to stay asleep all night, as there is something in my body that is unbalanced and prevents me from reaching the deepest stages of sleep. It is a common symptom of Fibromyalgia and I definitely suffer from it.
The worst part of Don's snoring, as I realized while listening to and studied the sound for many hours on end very recently, is that it's not a nice, rhythmic pattern of sound that I can get used to hearing and still drift off to sleep despite the volume. Rather, the sounds vary in type, volume, and timing. At times, I'd manage to drift into that pre-sleep stage, only to be startled back awake by that all too familiar chainsaw in the bed, next to me. I must admit, there were times when I felt so frustrated I almost wanted to smother him with my pillow... but I didn't. I cannot punish him for something he cannot help or even realize he is doing. He's sound asleep, dreaming. He might as well get a good night's rest, even if I can't.
Anyway, in the mornings, after Don was up for work, I mentioned my lack of sleep and my frustration with the snorminess. He wanted to help, but wasn't sure what he could do. He even offered to try those BreatheRight nasal strips that are supposed to help reduce snoring, but he has his own health problems and I didn't want to hurt his fragile skin with the adhesive. I asked for ear plugs.
Since I saw Breakfast at Tiffany's a couple weeks ago and saw Holly's fancy little tasseled ear plugs, I wondered if I should be sleeping with ear plugs, too. Not tasseled ones, of course - I'd never be able to sleep comfortably with those. But I knew we had foam ear plugs in the house, because we have gone target shooting and have proper ear protection for that activity. So, Don dug them up for me and I tried them several nights ago, for the first time (for sleep).
The nice thing about these ear plugs is that they are like memory foam: they are small, and soft. You roll the little cylinders into skinny little things that you can quickly cram into your ears, then they expand back as much as they can to fill your ear canal and block as much sound as they can. They don't block it all - in fact, I can still hear the snores through them, but they definitely dampen a lot of the noise, so it's a lot easier to ignore. They also block out all those little bump-in-the-night noises that can wake a light sleeper.
When I first put them in, I get to hear the ringing in my head a bit louder for a while, but I seem to get used to it soon enough and then drift off to slumber pretty easily. I have used them now for three nights and I have slept WELL for a change! I only remember waking up maybe once each night, to turn over and get comfortable. I fell back asleep quickly and slept until a reasonable morning hour. These little things have made a huge difference in my ability to sleep, stay asleep, and all the cascading symptoms that occur when I don't get enough z's.
If you're a light sleeper who gets awakened by any little noise or slight disturbance during the night, or if you are lucky enough to have a snoring bed mate and it's affecting your sleep, these are cheap and comfortable and worth a try. Of course, if you have someone who depends on you to wake up at night, like a baby or other dependent, you may not want to reduce your chances of hearing them, but otherwise, go for it!
Here is a quick start to finding some foam ear plugs online, but you can probably find at least one brand at your local general store as well. The larger packs might be better worth the price or/and shipping, since I'm sure they can only be reused so many times before they break down and get nasty from ear wax and sweat and stuff. Invest in a few.
I hope this helps someone out there. I wish I'd tried this earlier!
The week after that, I caught some sort of mild cold and continued to have increasingly more difficulty getting and staying asleep each night.
Just this week, a day after returning to work, I came down with some sort of stomach virus that had me weak, in pain, and exhausted from being awake for several hours each night.
What's worse, Don is a snorer. There is a running joke at our house that, whenever I hear him snoring a lot during the previous night, the next day I complain that last night was very "snormy".
He seems to sleep pretty well, despite his snoring, but I certainly don't, especially when flare ups or other things are keeping me awake. As a fibromite, I am never fully rested, even if I manage to stay asleep all night, as there is something in my body that is unbalanced and prevents me from reaching the deepest stages of sleep. It is a common symptom of Fibromyalgia and I definitely suffer from it.
The worst part of Don's snoring, as I realized while listening to and studied the sound for many hours on end very recently, is that it's not a nice, rhythmic pattern of sound that I can get used to hearing and still drift off to sleep despite the volume. Rather, the sounds vary in type, volume, and timing. At times, I'd manage to drift into that pre-sleep stage, only to be startled back awake by that all too familiar chainsaw in the bed, next to me. I must admit, there were times when I felt so frustrated I almost wanted to smother him with my pillow... but I didn't. I cannot punish him for something he cannot help or even realize he is doing. He's sound asleep, dreaming. He might as well get a good night's rest, even if I can't.
Anyway, in the mornings, after Don was up for work, I mentioned my lack of sleep and my frustration with the snorminess. He wanted to help, but wasn't sure what he could do. He even offered to try those BreatheRight nasal strips that are supposed to help reduce snoring, but he has his own health problems and I didn't want to hurt his fragile skin with the adhesive. I asked for ear plugs.
 |
| My little foam ear plugs, after several uses |
The nice thing about these ear plugs is that they are like memory foam: they are small, and soft. You roll the little cylinders into skinny little things that you can quickly cram into your ears, then they expand back as much as they can to fill your ear canal and block as much sound as they can. They don't block it all - in fact, I can still hear the snores through them, but they definitely dampen a lot of the noise, so it's a lot easier to ignore. They also block out all those little bump-in-the-night noises that can wake a light sleeper.
When I first put them in, I get to hear the ringing in my head a bit louder for a while, but I seem to get used to it soon enough and then drift off to slumber pretty easily. I have used them now for three nights and I have slept WELL for a change! I only remember waking up maybe once each night, to turn over and get comfortable. I fell back asleep quickly and slept until a reasonable morning hour. These little things have made a huge difference in my ability to sleep, stay asleep, and all the cascading symptoms that occur when I don't get enough z's.
If you're a light sleeper who gets awakened by any little noise or slight disturbance during the night, or if you are lucky enough to have a snoring bed mate and it's affecting your sleep, these are cheap and comfortable and worth a try. Of course, if you have someone who depends on you to wake up at night, like a baby or other dependent, you may not want to reduce your chances of hearing them, but otherwise, go for it!
Here is a quick start to finding some foam ear plugs online, but you can probably find at least one brand at your local general store as well. The larger packs might be better worth the price or/and shipping, since I'm sure they can only be reused so many times before they break down and get nasty from ear wax and sweat and stuff. Invest in a few.
I hope this helps someone out there. I wish I'd tried this earlier!
Monday, July 25, 2011
Switching to Savella - Done?
Yesterday I felt relatively "normal" (for me) and I think the brain zaps are pretty much through with me, finally. I am still dealing with some odd sensations and discomfort, but after what I've been through, I've decided to try to keep looking forward and enjoy the progress I've made.
Although, to be honest, I have noticed I'm a bit cranky at work today. That could have nothing to do with the meds, though, as quite a few people on my team are missing and stuff is piling up and feeling a bit overwhelming. I'm doing my best to just pick something and do it so I can get it off my list. That's the best strategy I've ever been able to implement for dealing with having way too much on my plate. Just do one thing at a time until it's done and don't worry about the new things being added. A Benia's work is never done. ;)
I don't really want to admit this, but I have had some very minor nausea this morning. I grabbed one of my sugared ginger cubes from my stash and sucked on that for a bit, which helped. I have been nauseated for no apparent reason before the switch, so it could be nothing, but the top side effect of Savella mentioned by both my doctor and the medication information leaflet is nausea. Remembering how terrible the nausea was with Cymbalta, however, still makes me feel like this is going to be just fine.
Also, in the interest of full disclosure, I've been noticing some fast heartbeats and possible palpitations since starting on Savella. It's one of the possible side effects, but it was also possible with Pristiq, my old SNRI. I have been susceptible to tachycardia since I was a teenager, when I had my first scary episode, though no doctor could tell me why. It could be that Savella is exascerbating that now, but hopefully it won't last too long. The worst time is when I'm trying to sleep and I feel my heart just pounding away like a disco beat.
So, with this mostly behind me, I'm going to get my focus back on getting my tubby body back into some sort of shape. I'm trying to get back on my Baby Steps wagon, and have been trying new ways to strengthen my muscles - starting very slowly, of course. I felt some soreness in new places from the new exercises, which was a bit of a reward for me. I am also trying to get out in the sunshine and walk more, too, while summer's still here.
Hope these posts will help someone, either now or in the future!
UPDATE: See this important post as a follow-up to this withdrawal nightmare: https://xsarenkax.blogspot.com/2011/07/switching-to-savella-guess-who-called.html
Although, to be honest, I have noticed I'm a bit cranky at work today. That could have nothing to do with the meds, though, as quite a few people on my team are missing and stuff is piling up and feeling a bit overwhelming. I'm doing my best to just pick something and do it so I can get it off my list. That's the best strategy I've ever been able to implement for dealing with having way too much on my plate. Just do one thing at a time until it's done and don't worry about the new things being added. A Benia's work is never done. ;)
I don't really want to admit this, but I have had some very minor nausea this morning. I grabbed one of my sugared ginger cubes from my stash and sucked on that for a bit, which helped. I have been nauseated for no apparent reason before the switch, so it could be nothing, but the top side effect of Savella mentioned by both my doctor and the medication information leaflet is nausea. Remembering how terrible the nausea was with Cymbalta, however, still makes me feel like this is going to be just fine.
Also, in the interest of full disclosure, I've been noticing some fast heartbeats and possible palpitations since starting on Savella. It's one of the possible side effects, but it was also possible with Pristiq, my old SNRI. I have been susceptible to tachycardia since I was a teenager, when I had my first scary episode, though no doctor could tell me why. It could be that Savella is exascerbating that now, but hopefully it won't last too long. The worst time is when I'm trying to sleep and I feel my heart just pounding away like a disco beat.
So, with this mostly behind me, I'm going to get my focus back on getting my tubby body back into some sort of shape. I'm trying to get back on my Baby Steps wagon, and have been trying new ways to strengthen my muscles - starting very slowly, of course. I felt some soreness in new places from the new exercises, which was a bit of a reward for me. I am also trying to get out in the sunshine and walk more, too, while summer's still here.
Hope these posts will help someone, either now or in the future!
UPDATE: See this important post as a follow-up to this withdrawal nightmare: https://xsarenkax.blogspot.com/2011/07/switching-to-savella-guess-who-called.html
Saturday, July 23, 2011
Switching to Savella - Day 7
Despite more violent thunderstorms last night and remaining awake since the 3am tornado siren, I felt like this morning was much better, symptom-wise, than yesterday. I was able to sleep some of the night without covers or without having to completely burrito myself in all three layers of blankets, which was a great improvement for me with the temperature stuff. Then I also felt less dizzy and brain zappy, too, even after being up for hours and moving around a bit.
I did some of my Baby Steps exercises and when Don got up, we walked around the block in our rain jackets and had a little banana bread for breakfast. I went back to bed and napped for several hours and felt I was able to have beer again! That's a big improvement! We went to one of our favorite places - Bavarian Lodge in Lisle, IL - and enjoyed a couple of interesting new Belgians on tap there. I was also very good about ordering a salad, though most of the food is deliciously fried and German, because I'm still working on getting some of this weight off.
I'm looking forward to taking my first top dose pill of Savella tomorrow morning, and then heading off to meet up with a fellow fibromite friend of mine for brunch.
I don't want to jinx anything right now, but I had a good day today and felt almost human again. After several days of being way off that mark, this is a huge relief for me. I'm hoping the withdrawal symptoms from Pristiq are behind me and that Savella will improve my Fibromyalgia symptoms, as my doctor and I are hoping.
Oh, something I'd forgotten to mention in yesterday's post was that I was dealing with a little sciatica attack when I went to bed early on Thursday night. It was in my worse leg -the right - and always feels like sudden lightning strikes inside the back of my leg. Not fun, but at least it only lasted a few minutes.
Also, no word, of course, from my doctor. He's definitely going to get an earful at my next appointment about all of this.
I did some of my Baby Steps exercises and when Don got up, we walked around the block in our rain jackets and had a little banana bread for breakfast. I went back to bed and napped for several hours and felt I was able to have beer again! That's a big improvement! We went to one of our favorite places - Bavarian Lodge in Lisle, IL - and enjoyed a couple of interesting new Belgians on tap there. I was also very good about ordering a salad, though most of the food is deliciously fried and German, because I'm still working on getting some of this weight off.
I'm looking forward to taking my first top dose pill of Savella tomorrow morning, and then heading off to meet up with a fellow fibromite friend of mine for brunch.
I don't want to jinx anything right now, but I had a good day today and felt almost human again. After several days of being way off that mark, this is a huge relief for me. I'm hoping the withdrawal symptoms from Pristiq are behind me and that Savella will improve my Fibromyalgia symptoms, as my doctor and I are hoping.
Oh, something I'd forgotten to mention in yesterday's post was that I was dealing with a little sciatica attack when I went to bed early on Thursday night. It was in my worse leg -the right - and always feels like sudden lightning strikes inside the back of my leg. Not fun, but at least it only lasted a few minutes.
Also, no word, of course, from my doctor. He's definitely going to get an earful at my next appointment about all of this.
Thursday, July 21, 2011
Switching to Savella - Day 5
I've been working from home again today and I noticed the brain zaps are getting less frequent, perhaps because I've been at the computer most of the day. I'll take it, whatever the reason. My abdominal issues are still there on a low level, too, but I've been managing and trying not to listen to the gurgles or think about it too much.
Last night I noticed I felt this odd kind of restless, unsettled, discomfort feeling in my body. At first I couldn't find a comfortable position for my feet while watching TV, but then I realized I was trying to shake off some sort of vague feeling I couldn't name. I don't know if this is related to the drugs at all, but I'm noting it anyway because it's weird. I felt like I wanted to get away and go to bed, but when I did, the feeling followed me there, too. I am still having some of this now. I may need to try to move around more to distract my body.
I am getting better at handling the temperature issues, I think. Last night I was baking up some banana bread muffins even though the weather this week has been near the 100 degree mark with all kinds of cautions about it and everything. I managed to make the muffins and make some salad for dinner, too. I was tired, but I felt useful, which was good for my mental state.
I also went to bed without my jammy pants, though I still needed the shirt and socks. Plus I was okay with not being buried in the blanket. That's an improvement. I ended up waking up at 3am, though, with a headache and inability to get comfortable, so I didn't get much sleep. It may just be my normal insomnia combined with odd sleeping temperatures and other factors, like the headache and bellyache. I got up at 4am when I realized sleep wouldn't be back so my husband could get some sleep.
The good news is that I managed to shower AND get dressed in real clothes today - not just swaddling clothes, like for the past few days. I even brushed and did my hair! It's almost like I'm a real person again.
Then I went outside, picked up the mail, and looked around our yard a bit. Our poor plants are all so tired from the drought and heat, even though they are hardy natives, many of them prairie plants. Still, there was life to be found, though, while bumblebees, dragonflies, damselflies, cicadas, birds, and even baby bunnies all went about their business collecting food and doing whatever else they need to do in our little yard. After meandering our path for few minutes, I went back inside to get back to work. (The release looks like it might go well.)
I have not yet heard anything back from my doctor. :P
If all goes well tonight and tomorrow morning, I just might be able to drive into the office for work tomorrow. Won't that be something! No promises yet, though. There's no telling what's around the next corner when it comes to this kind of stuff. Stay tuned...
Last night I noticed I felt this odd kind of restless, unsettled, discomfort feeling in my body. At first I couldn't find a comfortable position for my feet while watching TV, but then I realized I was trying to shake off some sort of vague feeling I couldn't name. I don't know if this is related to the drugs at all, but I'm noting it anyway because it's weird. I felt like I wanted to get away and go to bed, but when I did, the feeling followed me there, too. I am still having some of this now. I may need to try to move around more to distract my body.
I am getting better at handling the temperature issues, I think. Last night I was baking up some banana bread muffins even though the weather this week has been near the 100 degree mark with all kinds of cautions about it and everything. I managed to make the muffins and make some salad for dinner, too. I was tired, but I felt useful, which was good for my mental state.
I also went to bed without my jammy pants, though I still needed the shirt and socks. Plus I was okay with not being buried in the blanket. That's an improvement. I ended up waking up at 3am, though, with a headache and inability to get comfortable, so I didn't get much sleep. It may just be my normal insomnia combined with odd sleeping temperatures and other factors, like the headache and bellyache. I got up at 4am when I realized sleep wouldn't be back so my husband could get some sleep.
The good news is that I managed to shower AND get dressed in real clothes today - not just swaddling clothes, like for the past few days. I even brushed and did my hair! It's almost like I'm a real person again.
Then I went outside, picked up the mail, and looked around our yard a bit. Our poor plants are all so tired from the drought and heat, even though they are hardy natives, many of them prairie plants. Still, there was life to be found, though, while bumblebees, dragonflies, damselflies, cicadas, birds, and even baby bunnies all went about their business collecting food and doing whatever else they need to do in our little yard. After meandering our path for few minutes, I went back inside to get back to work. (The release looks like it might go well.)
I have not yet heard anything back from my doctor. :P
If all goes well tonight and tomorrow morning, I just might be able to drive into the office for work tomorrow. Won't that be something! No promises yet, though. There's no telling what's around the next corner when it comes to this kind of stuff. Stay tuned...
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