Switching to Savella - Guess Who Called Today

My fibro doctor, Dr. Wilkin just called in reply to my message from last week Tuesday. He may have been out or something last week because he said he's been trying to catch up on a ton of messages and when he saw mine he gasped and had to call me back right way (now). He apologized numerous times for not calling sooner.

I told him I was a lot better now, but had to deal with it all alone, and that I'd wished I'd been better warned about the withdrawal symptoms because the timing was pretty poor (for work) to be going through all that. He said he'd had numerous patients change meds like this and not report any problems.

I asked specifically about the hard stop on the Pristiq and the slow increase on the Savella and if what I experienced was withdrawal from Pristiq because the Savella wasn't compensating enough. (See the lovely chart I made above that shows my dosing change for SNRI meds.  The yellow highlights the week I was switching over... and miserable.  Notice the big dip in meds during that period?) 

He said that may very well have been it. I asked him what he would have told me if he'd gotten to my message sooner and he did say that increasing the dose on the Savella sooner would probably have been justified. I said I wouldn't dare do such a thing without his guidance, of course, but had wondered if that would have been a possible solution. He apologized again for not calling sooner. I told him to please keep this plan in mind for the next patient that may be switching to Savella from another similar drug: to have them take the higher dose sooner, and not wean up. He agreed that was a good idea.  Future patients: you're welcome.  :)

If you're going through this kind of SNRI or SSRI switch yourself, or will be soon, please ask your doctor about filling that gap in dosage and if you can possible skip the misery I went through by cutting over from full dose of one med to full dose of the next, especially if you're going from Pristiq to Savella, specifically.  Everyone is different, and every combination of medications can be different, so don't make assumptions.  But do stay informed and keep open communication with your doctor, preferably before any problems occur.

My "Pages" are Finally Updated

A while back, I added what Blogger is calling "pages" to my blog. This is the top row of links to other content on my blog. They've been under construction for a long time, but I've finally updated them. They may get updated in the future, but at least there is substantial content there.

Here are links to those pages, for my subscribers:
Home (same as before - my posts)
About Me
Fibro Info
Native Gardening
Craft Beer
Other

As always, I welcome your feedback.  Enjoy!

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

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.

Switching to Savella - Day 6

That indescribable feeling of being uncomfortable in my own skin and being unable to find comfort that I have been getting in the evenings happened again last night, so I went to bed at 8am, hoping to escape it with sleep.

I also managed to get a decent night's sleep, despite some magnificent racket outside. A huge thunderstorm rolled in last night and the thunder cracks sounded like the storm was right on top of us for a while. I listened to the pounding rain and the thunder for a bit, but still managed to get back to sleep. Hooray!

So, today, after several days of feeling dizzy and clammy and various other kinds of ick, I decided I had gotten used enough to the ick feelings to try to drive to work today. The brain zaps seem to be occurring less frequently lately, and I think going through the normal routine helps me to not feel so much. I managed to get through the drive with extra care and focus, and at the office, I caught up with my coworkers and did some light work. Luckily, it's the day after a release that went well, so things were very low key and low stress today. Thank goodness!

I did have some issues with temperature in the office. The air conditioning chilled my hands, yet I could feel the sweating on my torso continuing. I was uncomfortable and had my rain jacket on and off throughout the day to adjust. I also had some hot beverages to try to warm my hands up.

Concentrating was kind of difficult, as I remember doing roughly 20 things at once and not really doing them well or feeling like they were complete. I hate that feeling. I'm usually multi-tasking at work, but today I was more scattered, unable to finish things up and feel good about it. When the end of the day came, I had to give up trying to finishing anything and just get myself home. Now here I am.

There something else I wanted to note here about my symptoms. I have had feelings of not quite knowing who I am for a bit during all this. I don't mean like I had amnesia or anything like that. It's just kind of like I was on the outside, looking in, and felt not quite ME. Or perhaps I feel like I'm some sort of cartoon version of myself. Maybe cartoon isn't the right term, maybe it's like wearing someone else's persona, involuntarily. It was odd enough anyway. I can't quite describe it.

Something else that may or may not be related to any of this drug withdrawal stuff is that my right hand, my mousing hand, is very uncomfortable and somewhat tingly as of yesterday. Perhaps I've been computering too much without taking a break, but it's hard to get it to feel okay. I keep shaking it and trying to get the blood circulating properly within it, but it continues to feel strange. I hope this weekend will help it relax a bit and maybe get back to feeling normal again.

On that note, I'm going to go rest my hand and try to continue to pretend I'm normal and see if that helps me adjust a bit. I'm hoping tomorrow I will feel even better than I did today. My first full dose of the Savella will be Sunday morning. I'm not expecting to feel back to normal on Sunday (though that would be awesome), because it seems to take a little while for my body to adjust to anything. My hope is that by about Wednesday or so next week, I may feel like my "normal" (fibro-ey) self again.

Time to find some dinner...

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...

Switching to Savella - Day 4

Just when I think I'm getting the hang of this brain zap and sweating thing, I am finding that my body is not done finding new, weird things to do to me during this medication change.

I have been having abdominal pains here and there, but today, they have escalated into full-blown diarrhea. (Some of last night's dinner looked familiar.) What the hell? I didn't know this was part of the program! Is this the next thing I'm going to have to live with for a while or what? Boo to that!

After being unable to deal with the idea of working for two days, I decided I'd try to work from home today. I figured since I was able to handle the brain zapping pretty well while doing various personal stuff on the computer, I noticed I could keep my eyes and body relatively still, minimizing the effect. It's still pretty crazy once I get up and move around, especially on the stairs, but I go slowly and hang on wherever I go. Thank goodness my shower has a bar to hold onto or I'd have fallen for sure!

The workday at home has been okay so far. I've managed to jump back into the projects and get some urgent things taken care of. (I work in IT and this happens to be a release week, so deadlines are tight. Figures, right?) Anyway, I feel better about catching up a bit, and not having to go completely broke by taking even more time off work. A day's work really adds up to a lot of money that I miss when I have to take unpaid time to be sick. It's better than being fired, though, so I count my blessings and I'm happy to have employment and benefits.

Anyway, back to the update on this drug transition...

I noticed a little bit yesterday, and a bit more today, that I am a lot closer to being on the verge of tears. I've been pretty good about not crying much since being on the meds and understanding Fibromyalgia and how it goes over the past several years. Imagine my surprise, then, when I found myself feeling like I was about to cry and actually let out some tears while watching television today at lunchtime. It doesn't seem to take much at all right now. Someone talking about something sad, an emotional moment, even stupid commercials are all making that feeling of tears welling up happen to me. It's dumb!  I don't care about these actors pretending to be sweet or sad to sell me products! This is ridiculous!! I hate this feeling. I've already fought off tears about 5 times today, just from dumb stuff on tv. It's got to be part of this withdrawal stuff or else I'm really confused about myself.

I noticed I was kind of snippier and angrier yesterday or a couple days ago, but that seems to be changing into some kind of sappiness. Geez, chemicals, figure it out already. I'm not in the mood to rediscover who I am or go on some emotional roller coaster... for nothing. Bleh. I just want to shake it off.

Oh, the sweating and my intolerance of cold or any slight breeze seems to be subsiding a bit today. I noticed I was actually uncomfortable in the hot office at home here today and, to my surprise, I turned the ceiling fan - and liked it. It's been on all day and I'm mostly okay with it. I'm still sweating because I don't want the air conditioner on yet, but I'm glad I can handle at least a hot breeze now. Perhaps later or tomorrow I'll be able to actually be cooler without bundling up in a thousand layers of blankets. Dare to dream...

Oh, by the way, I took my first medium dose of Savella this morning, so perhaps that has something to do with the noticeable changes of today vs. yesterday. The titration pack starts on a low dose, works up to a medium dose, then finally, by the next week, the full dose that I'm supposed to stay on indefinitely. I'm hoping I'll be in the clear about this time next week, after a couple days on the highest dose. Until then, I'll just have to keep adapting to the surprises. I guess I can thank Fibro for the training on that one. ;)

P.S. I finally got through to my prescribing doctor's office yesterday afternoon and left a message for the doctor about maybe getting some sort of guidance for this transition (since he implied this should have gone a lot more smoothly than it has been). It's been almost 24 hours now and I haven't heard a peep back from anyone. Nothing. Not a "he got your message and will let you know what he finds out" or a "he will give you a call tonight" or even a "go to hell, you're crazy". For all I know, the girl who took the message never even gave it to him. I'm not going to hold my breath about this, since he seemed not to be informed about any of this in the first place. It's a shame that so many patients have to go through much worse than this without help from doctors or anyone, because it's covered up. How rude, drug companies! Even if it's physically addicting and a bitch to get off of, let us know the deal and we'll decide if it's worth it or not. Then help us out when we have to go through this. People are trying to quit these kinds of drugs and are in utter agony. It's so wrong. If the drug company wants to make more of my money, I would suggest being open about all of this and researching the best methods for getting off when it becomes necessary for whatever reason. Don't just pretend it's not happening. That is not cool!

Uh-oh, there's my snippiness again. Sorry about that. This issue really irritates me. People disappoint me time and time again. I just don't see how they can go on continuing to be assholes. If I had the power they had, I'd use it for good, not evil.

That's enough for today. I'll check back here tomorrow.

Switching to Savella - Day 3

I am at home again today, with the air conditioning off, sweating profusely and my feet are still cold.  My bones feel cold and achy.  I'm sure my boss is not happy with me, but he should be happy he's not going through the crap I'm going through.

My brain zaps are continuing, which is the main reason I did not go to work.  I noticed there is a weird kind of tinnitus thing that happens with each "zap".  It's like the momentary deafness that can wash over your head from time to time?  (Or maybe that's just me.)  Anyway, when I move my eyes around I notice it most.  The ringing kind of gets louder for a second, I feel like I'll pass out, and there's some sort of pressure or lack of pressure or something that I feel in my head.  I hear ambient noise in the room at a slightly louder volume when it happens.  It truly is hard to describe.  The most disconcerting part is feeling like I'll faint.  I don't trust that I won't.  I hang onto walls when I walk and I go very slowly.

Perhaps the emotional stuff is coming around. I feel a bit more irritable and angry about this.  I know it is temporary (I hope), so I just need to get through it.  I just hate not knowing when I'll be okay and can resume my new normal life again.  If my doctor had warned me that I'd have a week to feel completely wack and wouldn't be able to work, I might have tried to plan better or take vacation time from work or something.  Instead I'm in this and I just have to finish it, no matter how long it takes.  There's no going back now.

Switching to Savella

During my last visit to the neurologist/pain specialist on June 21, 2011, my doctor strongly suggested that I switch from Pristiq (an SNRI much like Effexor) to Savella (an SNRI approved for Fibromyalgia treatment, specifically), to see if I could improve my FMS symptoms. I have been on the Pristiq for... I think 3 years now. It was prescribed by my previous Fibromyalgia doctor. I had heard that Savella has been helping other fibro patients, so I agreed to give it a try.

I am starting Savella via a couple of the starter titration sample packs, which gradually works the dosage up over the course of one week or so (two weeks, if necessary due to side effects like nausea, per the doctor). Once I achieve the top dose, I can fill the prescription and carry on with the full dose.

Well, today is day 2 of my switchover from Pristiq to Savella. I took my last Pristiq tablet (it's a once-daily AM dose) on Saturday morning and took my first tiny dose of Savella yesterday, around 3pm. The first dose of Savella is an evening dose, but I wasn't sure if I should wait until bedtime to take it, since it meant being without either drug for almost a whole day, so I compromised and took it in the middle of the day. Perhaps I should have waited?  Anyway, a few hours after taking the first dose yesterday, I started noticing a frequent, intermittent dizziness. Also, despite the summer heat outside, I was getting goosebumps from the fan air blowing on me and needed to get a sweatshirt. I later felt chilled to the bone and had a hard time warming up.  When the dizziness got worse with every movement or any eye movement, I wondered if perhaps I was experiencing withdrawal symptoms from stopping the Pristiq so suddenly and not moving right into a full dose of Savella... or if the Savella was causing its own side effects. It was a Sunday, so there was no calling the doctor. I did what any of you would have done: I searched online for clues.

From what I could tell in my research, the dizziness I'm experiencing is something similar to what people call "brain zaps". This term is used among patients to refer to a very strange sensation in the head while trying to get off medications that are physiologically addictive. Apparently anti-depressants (both SSRIs and SNRIs) fall into this category and my body is acting this way because it misses what it's been used to for a long time now. I learned about a lot of ways people try to describe this sensation, but it's difficult. For me, it's like feeling I'm going to faint for a half-second, but over and over again very rapidly, especially with any movement or eye movement. It's almost constant, but not quite.

Needless to say, it's hard to ignore and I took a sick from work today because I couldn't imagine driving or working in this condition. I napped away most of the day today, because it was all I could do to make this feeling stop - being unconscious. I also dreamt very odd situations, but I don't think that's anything unusual for me. My dreams tend to be very detailed and vivid, though they don't always make sense after I wake up and think about them.  It may be a fibro thing, a Pristiq thing, or maybe even just a "me" thing.  Who knows?  Also, my heart sometimes palpitates.  Today, every time I woke up from sleep it was pounding for a short while. 

Anyway, while doing research on these effects, I had to learn about all of it from patients themselves. Of course I went to the official drug information first, looking for their list of withdrawal symptoms and instructions, but, oddly, those could not be found. Come to find out, there has been quite a bit of controversy about drug companies hiding the research data on withdrawal effects. In fact, they refuse to call them withdrawal effects. They renamed them "discontinuation effects" wherever forced. There are investigations and lawsuits on a federal scale into the lack of information about how frequently these effects occur in patients who stop taking these drugs, presumably because it might hurt drug sales. My doctor didn't warn me at all about having to deal with any sort of withdrawals or discontinuation effects while switching over from Pristiq to Savella. I believe he simply does not have the information because it was omitted or downplayed by the drug reps and their research. Even I knew that stopping SNRI "cold turkey" would likely result in some sort of withdrawals, but I assumed that since I'd be starting on another SNRI right away, that I wouldn't have to deal with any of that. I could be wrong, but I think I'm going through withdrawals right now anyway.

Thanks to the plethora of information on the Internet from patients who have told their stories, I was able to understand that what I'm going through is connected to the chemical changes in my body. However, if I hadn't known about withdrawals from SNRIs, I might have had to endure more troublesome psychological effects, or possibly done something counter-productive, because of this lack of information. I'm including all this here because I know eventually, someone like me will be in the same position, looking for answers, and hoping to understand what's going on with symptoms like this. I hope this information is helpful to someone out there.

I'll try to keep posting on my progress here as things change. Let's hope it's not too difficult for me. I've read that many patients who make it onto the full dose of Savella do finally find better relief on it. I hope to be one of them soon. Wish me luck!

Weird Timing for Pain

Did you ever get sudden jolts of pain during odd times - usually with people around who wouldn't understand?

Today, my first day back at work after a week off, I was in a meeting with my boss and two coworkers. While discussing upcoming projects, my sciatica started acting up out of nowhere. I was probably making faces because it comes on so suddenly and fires those lightning bolt pains in the back of my right leg in rapid succession for several minutes.

I said nothing about it, of course, because we were involved in the discussion of the topic, but, needless to say, I was having a hard time focusing on the meeting. I grabbed my leg and wondered if I could voluntarily NOT wince so I wouldn't have to explain or be asked what's wrong. Well, nobody asked anything, but I'll never be certain that they didn't wonder if I was judging the discussion with my odd facial expressions or something.

Ugh. What a pain!

Exciting, New Flavors of Pain

First off, I'm happy to report that my bout of food poisoning has finally subsided.  :)

After being in constant and varying Fibromyalgia (FMS) & Chronic Myofascial (CMP) pain for almost 5 years now, I'm surprised to find that I'm still experiencing some new, unfamiliar pains.

Having declared (only recently) that I have finally graduated to the final stage of grief - acceptance of my chronic illnesses - I thought I'd figured out how my new, broken body works to some degree. Sure, it's still unpredictable, but understanding the unpredictability kind of helps it be more predictably unpredictable. Words fail me, but I hope you know what I mean. Come to think of it, since Fibro Fog is part of the new me, perhaps these pains aren't really new. Perhaps they are just pains I've had but don't recognize this time around. Perhaps I'd experienced these pains earlier, but I was too new at this chronic illness thing and didn't quite understand what it was. Heck, I'm not sure now, but I have a hunch it's got something to do with FMS or CMP.

At any rate, I'll try to describe how these weird pains feel...

Last night, I was sitting on the couch with Don, enjoying some evening TV. Suddenly, out of nowhere, my lower left pelvic region felt like shards of glass were trying to break through my abdomen to run around the house, screaming. It was abrupt and made me "ow!" out loud, confusing Don as to what he might have done this time. I reassured him that it was nothing he'd done and felt it again. It was odd. I was happy to find that it settled back in and left me alone for the rest of of the night.

Today, I started my day feeling like I'd been run over by a Mack truck, but I still don't know why. I slept, dreamt, and don't remember exerting myself too much lately. (Although who knows what my thresholds are these days?) Eventually, I crawled into the shower and spent far too long trying to make the peppermint Dr. Bronner's soap wake me up or something, I guess. I got ready and drove myself to work. Getting out of the car was challenging, after having stiffened up during the drive (about a half-hour). I walked toward the building feeling sore in every last muscle from my butt down. Interesting, but nothing too unusual. Soreness is a fact of life for me now, even when I don't know exactly what I did to earn it. A few hours later, though, after going about my business at the office, I noticed my neck and shoulders got extremely tight and sore. My back hurts a little oddly too. It's like some package of misfortune has descended upon my upper body. What the heck? I try not to take too many as-needed meds if I can help it, but this seemed to warrant a muscle relaxant.

I'm still experiencing this high-level and sudden shoulder/neck stiffness and pain right now, and the legs are still sore when I walk. What happened? Was it something I did? More importantly, what's next??

I'm due for a vacation soon. Don has become wary of planning excursions with me lately, since he never knows if I'll be up to enjoying things with him, or if he'll end up having to try to enjoy something without me. I am convinced that if I am "on vacation" and not worrying about the usual stuff, my body will be more cooperative and let me have some fun without making me crash. I definitely won't be running marathons or anything crazy, but I think being pleasantly distracted helps keep stress levels down, which in turn, helps to keep my body processing working a little better than usual.

Cross your fingers for me!

One Stress Declining; Another Rising

As my work project is finally coming to its fruition this very day, the buildup of mental stress is beginning to wane.  It seems everything has been going reasonably well and any problems that may occur with our project should be relatively minor and manageable.  I'm sure there will be unanticipated little snafus here and there, but thus is any IT project.  We learn as we go, maintain and fix bugs as we continue to find them, and make continual enhancements.  So, I do finally feel better about this.

Physically, though, I've got a new stressor.  Let me give you the background first.

Last Thursday, my employer threw a lovely picnic for us all.  I had a great time, sang karaoke, even danced and enjoyed life for a while.  It was surely confusing for all my coworkers to see me looking as if I wasn't in any pain at all - especially the ones who don't understand Fibromyalgia and it's ups and downs. 

Anyway, I had been developing a headache near the end of the party, though I ignored it as part of the deal for feeling great and having a few drinks.  I met up with my husband afterwards for water, coffee, and a half-sandwich.  I continued to ignore the headache, hoping the water would help keep it at bay.  I went to sleep expecting it to be gone or mostly gone by morning.

That night, I woke up around 1am feeling absolutely awful.  The headache exploded to a level 7 or 8 and I felt very uncomfortable.  I was nauseated, too, which happens with severe migraines, so I grabbed a couple of Triscuits and water from the kitchen.  Literally, after the first Triscuit, I had to run to the toilet.

I'll spare you the details, but it was pretty clear that this wasn't a typical migraine - it was food poisoning, and my body was getting rid of what I recognized as potato salad cubes, even though I'd only had a bit at the picnic, and it about 12 hours earlier - before my dinner sandwich meal.  I felt a little better after the explosive "episode" was over, but not fantastic by any means.  I assumed I was on my way to feeling better and went back to bed and slept a bit. 

I went to work the next morning, still feeling the workout of my guts and assuming they were just tired and recovering from that night's activities.  I had green tea to help chase away any bacteria.  I'd also found out others were ill from the picnic food, too, which confirmed my theory.  It was a hot day, so it makes sense.  I just wish I'd thought to avoid the "cold" foods.  (Lesson learned!) 

As the day wore on, I started feeling more pain in the guts again.  It was building up again.  I left work early and read about typical food poisoning and how to self-treat.  I assumed it was over that day, but apparently this thing can last a few days - and it is still affecting me today, three days later.  I'm hydrating and eating only bland foods and sparingly until things improve.  When the pain comes on, it gets hard to stand up straight, or tolerate any movement. 

At least I know this is one of those temporary things that normal people get.  If this was just some random Fibro symptom, I'd be much more confused about how long it would last or what it means.  I'll just try to rest my guts and body until this passes, though I still need to get to work to deal with any fresh problems with our new application.

Never fear, though, I've got vacation time scheduled in a few weeks and will be getting some R&R soon.  Just knowing that helps relieve stress.

The Mess of Stress

Stress is a mess. Okay, I just wanted to rhyme that, but it didn't make much sense. I should say it can make a mess of me.

There's a huge, whiz-bang project going on at work that is (hopefully) going to come to fruition this weekend. I work in IT and this is a new business application that our team has been working on for many, many months now. There's been lots of testing and fine-tuning, and I haven't been able to afford the luxury of a sick day in a few weeks. There is too much to get done and I don't want to be the one to delay this thing (again) so I am putting forth as much effort and bravery as I can muster.

Unfortunately, I'm paying the price on weekends and evenings, when Don wants to spend time with me, but gets a tired, achy, fibro-foggy bundle of blah instead. I spent some quality time with Don last Saturday, sipping delicious beers at our favorite watering hole. However, Sunday was pretty much breakfast together and then my collapsing onto the sofa with a feverish headache and feeling incredibly worn out. Don was nicely productive and did thousands of chores and things that needed doing. I had to make Sunday my sick day.

Well, enough boo-hooing about this, I guess. I try to remember, as I drag myself into the office each day, that I am glad I am employed and can actually still hold down a job in my condition. I know many fibromites are not working because they are essentially disabled, and in turn, broke. It's adding insult to injury that the sick also have to be poor because of the way our health system is structured right now. I have hope that someday, things will improve.

In the meantime, I am trying to get it all done and hope it's all worth it when the project is launched.

What's the best piece of advice you've ever been given, and who gave it to you?

The "I'm always right" theory, from my husband Don, is very valuable to me. It's a confidence boosting way to proceed with decisions that allows for new information and changing opinions, no matter who you are. It's about what one believes to be correct at the time of question. It doesn't mean I don't make mistakes, it just means that I base my statements on what I know. As I know more, I may change my answers, but I always believe them to be right.

What's on your mind? Fun or serious questions welcome.

Anyone Miss Me?

Mallory, my Fibroduck and I have been busy lately. In the nicer weather, we like to enjoy my yard, "Native Suburbia". The plants are growing, blooming, and transforming faster than we can keep track! We've even gotten some new species added to the growing list of natives we grow, thanks to a plant sale at our local Wild Ones chapter in DuPage County, Illinois.

It's been quite rainy and the temperatures have been bouncing between the 40's and 80's (Fahrenheit) in Chicagoland over the past month or so. Today I managed to get a sunburn on my shoulders, but yesterday, the storms flooded the street and our basement a little. We're due again for hot storms tomorrow. I sure hope our basement doesn't flood again.

In the meantime, I've been enjoying the good days and trying to smile through the bad ones. With help from my husband Don and my kind friends, I've been better able to keep my mood up, despite the pains and discomfort, and some added stress related to a project at work. I'm doing my best to be reliable and get my share of the work done on the project so we can get things completed on time and with as few problems as possible. So far I'm feeling pretty optimistic about it.

I'll try to keep you all posted on things more frequently. I guess I've been hoping to get away from the computer desk while at home lately. Since I am at a computer all day long at work, I feel like I need to try not to do the same at home. I get a bit behind in my blog reading and my emails, too, so don't feel like I'm just slacking here. ;)

I hope things are at least reasonable wherever you are and whenever you find yourself reading this post. I hope my next post will be happy news for you.

Delayed Pressure Urticaria (DPU)

A couple Saturdays ago, I attended a great party at some friends' place. I had a great time and met lots of great people, but my body had some major bitching about the experience. The bottoms of my feet are apparently averse to long periods of standing around - especially in cute, party shoes (even though they were made by Söfft®).

I have been dealing with tender soles since that point during the party when I decided my feet had had too much and I took the shoes off. Unfortunately, the damage had already been done by then, and my feet were in so much pain that standing or touching anything with the bottoms of my feet was unbelievably painful. I had to kind of grin and bear it for the sake of preserving whatever amiability I could muster for the party and other guests. "Regular" foot pain is pretty bad, but coupled with swollen, tender, hived soles, it gets pretty ridiculous! I don't know if I can explain the feeling enough to someone who doesn't deal with this.

My skin is apparently very sensitive to many things, including: chemicals, sun or heat, cold, and various kinds of touch. I'd been officially diagnosed with dermatographia, which means that my skin hives up just from a scratch. (Paper cuts really itch a lot, sometimes before I realize I've gotten the cut.) This was long before the Fibromyalgia started.

Since the FMS diagnosis, however, I've noticed that kneeling in the garden to plant my native plugs caused me to have red, tender knees even a day or two after the hour or less of kneeling occurred. It looks really stupid as red ovals on the areas of pressure (I wouldn't wear a skirt or shorts in public if I can help it), but if they are touched, the areas are very tender and painful. Kneeling after the hive wheals have appeared is not possible without intense pain.

I've now learned that this is yet another category of urticaria/hives of which I have to be aware. Any part of my body that bears weight for a few minutes can break out in a thick hivey patch that can last for days, especially if not allowed to rest. This is called "Delayed Pressure Urticaria" or DPU. It's delayed because the damage is not apparent immediately upon the first touch - it takes time in order for the reaction to occur.

The delay is the especially tricky part of this condition. Unlike touching a hot pan, the painful feedback is not immediate, therefore the damage occurs for some time before the patient is reminded that there may be something happening. Minutes or even hours may go by, depending on the body part and amount of pressure being applied, before even noticing pain, which seems to take much longer to relieve than to acquire. By then, it's much too late to stop the process.

So here I am, almost two weeks after the triggering DPU incident, still suffering with tender feet, even before standing up from bed in the morning. No matter what shoes I wear to work, my feet are just not liking them. Any walking seems to cause an increase in symptoms, preventing my speedy recovery. All I can do now is try to rest as much as possible between necessary standing, walking, shoe-wearing, etc. to try to ease back into the normal, everyday level of chronic pain in my feet. (Isn't it great to have to wish for normal chronic pain levels? I'll take what I can get.)

Do you have DPU? Is there anything you do that helps? Please comment on this post and let me know!

Weird Weather and Possible Restless Legs Syndrome (RLS)

So, first a bit of good news... It gets hard to remember to notice the little victories sometimes. That cough I had that caused me some weird pain in my left side is finally done and gone. Also, I have backed off the Baby Steps quite a bit the last week or so (okay, that's kind of bad-ish news) but my tailbone is feeling much better, too. What's funny about these symptoms is that they are so very noticeable and bothersome when they occur, but when they finally leave, they just quietly sneak off and don't say good-bye. I noticed their absence much later than when it actually occurred. Good riddance, anyway!

Here's the latest bad news... It seems the weather has been making my symptoms flare up. We've been stuck in a weird low pressure system for the past few weeks, which has resulted in cold and mostly rainy weather. We've had hail and even a couple snowfalls in the past week! The snow arrived only about a week after we had 80+ degree weather here in Chicagoland. With the wacky weather I noticed more headaches, nausea, more overall pain and achiness, and a new kind of pain that seems to have settled in my legs and feet. I've been calling it bone pain. To make matters worse, I've also been dealing with added stress from work and stuff. Things at work are a bit on the crazy side, as we get closer to a major project deadline. I'm doing what I can to stay ahead of my own work, but I can tell my team is feeling stressed from problems and snags coming up this late and the probability of having to work longer hours to get everything done on time.

Now the neutral news... I had an appointment with my fibro doctor last Wednesday. Due to my fibro fog, I forgot to bring the notes I always bring with me, but I made do with a portable pad and pen and whatever notes I could remember to discuss. The appointment was for 5:40pm and I was on time; the doctor was not. I ended up waiting over an hour before I could have my appointment. (The explanation was a new patient and a thrown off schedule. I am switching back to morning appointments after this.) Anyway, while I was waiting as patiently as I could, I noticed I could not bear to sit still due to the "bone pain" in my legs. I moved them around and tried changing my posture periodically to read and distract myself, but it was no use. After about 45 minutes, I couldn't stand to sit (hehe) any longer and started pacing the waiting area. It's a small area and there were several other patients there, so I hesitated to start pacing and make them feel uncomfortable, but then I realized: it's a pain clinic! Certainly they would understand. Pacing helped my legs, even though it was a tight area and felt a little weird.

When it was finally my turn, the doctor and I discussed the weather affecting my symptoms, my change in medications, and, as usual, the doctor asked me about my sleep. He asked me if I feel refreshed in the mornings, or tired. I blurted out "tired" as if he should have known, before I realized how rude it must have sounded. Since I'd already apologized for having forgotten my notes and mentioned my retarded brain functioning, he was formulating a hypothesis and continued asking me questions. He asked specifically about whether I am moving my legs at night. I wasn't sure, but didn't think so. He asked if my husband complains that I keep him up with my movements at night. I know my restlessness has impaired his sleep quality, which is why I try to leave the room if I'm too awake to fall back asleep (like now). But he's also a very sound sleeper most of the time, so perhaps he's not noticing what I'm doing in my sleep because he's asleep himself. Then, I was surprised to hear the doctor tell me that he suggested I undergo a sleep study to see if I have Restless Legs Syndrome (RLS), adding that RLS is very treatable and could help me get better sleep, and in turn, bring back some of my thinking skills and chase away daytime fatigue.

A sleep study? Me? I've never thought of doing one. Would I be able to sleep at all with all the strange hookups and people watching? Then there was the RLS. I never thought I'd had this, though I knew it was common for fibromites to have. I do know someone who has been diagnosed and is being treated for RLS, but I always thought I'd know if I had it. Now that I've had a day or so to chew on this possibility, I am noticing the aches in my legs cause me to move my legs around quite a bit. As the doctor explained, RLS also entails shifting the legs around to try to find a comfortable position for them, but not succeeding. I thought back and realized that I have a hard time with my legs while watching TV in the evenings as well as at work at my desk. Then there was the incident right before the appointment, which I shared with him. I guess RLS is much more likely than I had realized.

As I type here, I am up due to my waking up and being unable to find a comfortable position to relax and fall asleep. I woke up shortly after 3am and noticed my legs were aching and I was stretching my ankles and trying to chase the pain off with movements. Then I decided I wasn't going to fall asleep any time soon and didn't want to keep disturbing Don's sleep, so I snuck off to do something more productive. I suppose it would be nice if I could at least effectively treat this pain/discomfort, even if that means adding yet another drug to my regimen. As a fibromite, it's rare to have confidence that any drug treatment is going to be effective, so hearing that RLS treatments are helping people is very promising. I won't pin my hopes and dreams on it (yet), but it's a ray of hope for some improvement. I'll take that.

A Pain in the Butt

I've finally moved up to 10+6 of my Baby Steps Workouts - yay me! 10+6 = 10 wall push-ups, 10 sit-ups, 6 free weight arm lifting moves on each arm, and 6 minutes on my elliptical machine, all done daily (mostly).

However, I'm noticing that my daily sit-ups may be causing my tailbone (coccyx) to become sore. I'm having a hard time sitting on hard surfaces. I do my sit-ups on carpeted flooring, and I feel the soreness during each sit-up, which is why I suspect these exercises are behind this pain in the behind.  I will try using a cushion to see if that helps. I don't want any excuses to keep me from continuing to make progress with my workouts.

Although I haven't lost much weight yet, my fat percentage has gone down from 38% in January to 32% in April. This is actually going according to my plan! (Remember getting on the wagons?) Once I get my muscles strengthened up and my metabolism increased, I'll start worrying more about my actual weight. So far, I'm on the right track, so I'm very happy about that. I'm also feeling pretty proud of myself for being able to sustain a daily workout routine. When I started, I could do the 1 wall push-up and 1 sit-up daily, but I've progressed and feel stronger now. Doing 6 whole minutes on the elliptical now is actually feeling more like a workout (for me) but I notice I'm able to go at a faster pace and keep it up much better now. I'm thrilled about this.

If there are fibromites out there reading this post and think they can't work out at all, please try a progressive workout that starts with just one little thing a day. It only takes a second to do a wall push-up and you can do it wherever you find a wall. It feels really good to have done it and it's very easy to start with. Each week (or whenever you're ready) you can add one more to the daily routine. Go at your own pace. Do it for YOU! You'll feel better about yourself and build up your strength at the same time. If you're doing your own workout, leave a comment and let me know about it. I'd love to hear from you.

Exercising, Making Friends, and Blog Stuff

Exercising:
I've been slacking on the "Baby Steps" lately, due to the pain in my left side, which I believe is a pulled muscle from coughing strenuously for a couple weeks straight. I did few or no sit-ups in the previous few weeks, and the rest of the workout was stagnating at level 10+4, with my doing some of the other exercises only sporadically.

A few days ago, I decided to see if sit-ups were tolerable with the remaining side pain and gave it a go. It hurts a bit, but I was able to do all 10, so I'm back on track, moved up to 10+5, and I'm doing all of my daily exercises again, starting last Monday. Whoo-hoo! It's hard work, but completing them does make me feel better, mentally.

Making Friends:
In other news, I met an online fibromite friend for the first time last weekend - VinaMist, author of her blog Just Breathe and contributing writer for the online arts journal Escape into Life. She's very nice. We had a great time talking over brunch (once we overcame my fibrofog mishap that prevented me from finding the place on my own).

We had tried to meet up once before, many months ago, but a family emergency kept that event from occurring. I'm glad we could finally get to know each other in person. It's very important to stay social with chronic illness, as it can be isolating. Befriending understanding people with similar health issues can be very rewarding for us fibromites.

Blog Stuff:
One final note: Blogger has announced a new feature for reading blogs in a cleaner format. I've included a link to this new format in my new "Other" page on the main blog. Other pages are still under construction for now, but keep an eye out for updated content on these new pages.

As always, I welcome your comments and feedback, and I'm always happy to make new fibromites friends. We are a FMily. :)

Sarcoidosis Ruled Out

I finally saw my allergist/asthma specialist last week. I told him I had Erythema Nodosum on my legs, chronic hoarse voice, and a nagging, chronic cough that has been going on for several years now. I was told to rule out Sarcoidosis, just in case, so he ordered a chest X-ray, which I had done last Friday evening.

I got a call from the doctor this morning who said my X-ray looks fine, so Sarcoidosis has been ruled out for me at this time.

In the meantime, we switched up my asthma and allergy maintenance medications to see if they can help me with my cough and hoarseness. So far not much has changed, but he told me to call him in a couple of weeks to see how the new meds are working for me.

In the meantime, I'm still nursing my left side and trying not to cough, as it hurts the muscle to cough or move around too much. Oddly, I feel more of an urge to cough lately. Though the productive cough from last month has passed, I'm finding that whenever I inhale, my throat seems irritated and wants to cough. Sometimes I just have to do it, though I try to hunch over or sit down if I can, since that hurts my side less.

Also, I'm still stuck on 10+4 for the Baby Steps workout, since I have skipped many days and haven't been doing sit-ups since I hurt my side. I did do my wall push-ups, 4 arm lifts, and 4 minutes on the elliptical this morning, so I'm trying to keep going and stay somewhat fit. Once my side heals up, I may have to do fewer than 10 sit-ups to start with, but I'll work my way back up again. :)

The Fibro ToolKit

Are you prepared for everything that could go wrong during a flare-up?  Do you have what you need as a Fibromyalgia patient?  Do you have a Fibro Toolkit to help you manage your physical and emotional health on a daily basis?

I was only diagnosed 3 years ago, but I've already collected quite a collection of tools and precautions - just in case.

Here's what I have, and what I think every Fibromyalgia sufferer should also have:






A Good Fibro Doctor

It's not always easy to find the right doctor, but if you don't like the one you've got, do what you can to keep looking for and trying new ones until you find one that you can work well with.  A good doctor is one who believes you, listens to you, and understands Fibromyalgia and the various ways to go about treating it.

Even better than one good doctor is a great team of doctors who effectively works together to communicate on the various health issues you need treated.  If you're not happy with your health care providers, move on.


A Library of Practical and Useful Books

Do some research and invest in or borrow at least one or two good resources to look back at from time to time.  Fibromyalgia encompasses a lot of various symptoms and has a lot of overlapping conditions associated with it.  It seems it's never the same condition twice!  As the fibrobeast evolves and confounds you, having a reliable text nearby may help with figuring it out and perhaps calming it or even explaining it to others.

The books I own are:

• Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin J. Starlanyl & Mary Ellen Copeland
• The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief by Clair Davies, Amber Davies, & David G. Simons

A Subscription to the Fibromyalgia Network News Journal

Like the books above, there is pertinent information that is great to consult for the myriad symptoms that plague us fibromites.  However, the Journal is published regularly and contains shorter articles that keep us updated on new research regarding causes and treatments.  The timeliness of this information is extremely useful and well worth the yearly membership fee.

If you can't afford membership, you can still look here for fewer, but still useful, articles - online and for free.


Useful Self-Massaging Tools

My Thera Cane and Knobble are handy for massaging certain spots, but if you're short on money, find yourself a tennis or other kind of ball or two and an old sock or stocking.  Put the ball or balls in the sock and tie the end.  Throw it over your shoulder and lean agains them on the wall or chair.  Or, they work on the soles of feet or other areas where pressure can easily be applied (without straining).

I also see a great massage therapist every two weeks for an hour-long massage (mainly on my back, neck, shoulders, and face) which helps release the myofascial trigger points I have.


Heat Wraps

Though some people like icing their pains, I find heat to be comforting on my painful areas.  I have worn out a couple of heating pads already and am currently on my third.  It is dedicated (mostly) to my spot on the couch.  At work, I keep "Bunny" in a closable leftover container for microwaving.  I made "Bunny" using a pair of soft socks, a bag of dry rice that cost less than a dollar, a piece of ribbon I just happened to have, and some hand-sewing.  I also have a fancier model that was given to me as a gift.  The shape of it lends itself more to a back or shoulder than the curvier part of the neck.  But "Bunny" is better for that, especially as hands-free.


Pill Organizers

I have two weekly pill organizers that are different colors.  One (white) is for my morning doses and the other (blue) is for my bedtime doses.  I have had to take some medications in the afternoons or middle of the day, but luckily those were temporary.  For those, I kept a supply in my purse and a daily reminder on my cell phone to let me know when to take my medication.  If you have one or more regular maintenance drugs that have to be taken at other times during the day, definitely invest in a third weekly pill organizer or some sort of other effective system to keep track of your meds. 

I fill both organizers at the same time, once a week, and make note of any prescriptions that need to get refilled soon.  Then I refill anything I need online ASAP so I don't forget and run out.  I also have a great system for making certain that I take my pills when I'm supposed to.  At bedtime, I take out both my morning and nighttime pill organizers and place them on the bathroom countertop.  I take the nighttime meds right away, then put the nighttime organizer away.  I leave the morning organizer on the counter until I wake up.  I figure the first and last things I do each day are to visit the bathroom, so I have made taking the meds part of that routine.


Effective, As-Needed Medications

In addition to the maintenance medications I take every morning and every night, I keep a small stash (in a traveling, purse-sized container) of various pain pills with me at all times, in case I need to rely on something to save me from disaster while I'm out.  I have: pain pills, muscle relaxants, headache pills, antacids and gas pills.  I have medication to help me focus for when I need to do well at work but the pain keeps distracting me.  I also keep an allergy medication and my rescue inhaler for asthma emergencies.  In addition, I have sugared ginger cubes in a baggie at work and at home, in case I feel nauseated.


Zostrix HP, Arthritis Pain Relief Cream
Zostrix is a cream that contains capsaicin.  I heard that capsaicin, which is derived from hot peppers, has a natural ability to lower Substance P - the chemical in our bodies that help our brains detect pain signals - with regular use.  Since studies have shown that Fibromites have too much Substance P, I figured I'd give this creme a try.  I don't use it often, as it heats up the area where applied, and my pains tend to wander too quickly to make use of the long-acting effects to be comfortable.  I usually opt for real heat, but use Zostrix when I know I'll be away from heat wraps and I'm having pain flares in more stubborn locations, like my upper back or my hip.


Someone Close Who Can Help You

I am lucky to have a husband who has learned what is most difficult for me and has taken on the burden of doing the more strenuous chores for me, and helping me when I ask.  He learns about the aspects of having Fibromyalgia along with me, as new experiences and information come about.  Without him, I don't know what I'd do.  Every fibromite needs someone they can ask for help and understanding, even if it has to be outside the home.


Fun, Easy Things to Do During Flare-Ups

One of the hardest things Fibromyalgia patients struggle to do is pace themselves by taking frequent rest breaks.  When we do, it's nice to have things we enjoy doing to keep our mind off our worries.  For instance, I like journaling, and I can do that from bed or my "nest" on the easy chair.  There are a couple of books I enjoy reading, too.  Then I've got a sketchbook for drawing (though I haven't done much yet), a Sudoku book (comes in handy in the bathroom), and there are lots of great places to read or be silly online if I'm up to being at the computer.

Pets or stuffed animals can also be fun to rest the mind and relief stress.  Remember to make sure you have things you can easily do in the middle of the night, for those sleepless hours that inevitably come our way.


WRAP: Wellness Recovery Action Plan

The idea for the WRAP came from one of the two books I listed above (the first one).  Bascially, you write out all the things that you should remember to do when you feel a flare-up starting, but probably have too much fibrofog to think straight.  Here's mine.


That's about all I can think of.  What's in your toolkit?  Share your tips!

My Fibromyalgia Story on Fibroduck's "Faces of Fibromyalgia" Blog

I submitted to Fibroduck a personal account of my transition from normal Benia to the Fibromite Benia I am today. It was published on the "Faces of Fibromyalgia" blog today.

Please click here to read my account.

To submit your story to the Fibroduck "Faces of Fibromyalgia" blog, please include a head and shoulders type photo of yourself and send an email to admin@fibroduck.com.

I'm Going Off the PPI

I left a message for my GI doctor last Friday because I was getting low on the proton pump inhibitor (PPI) medication and wasn't sure if I needed to continue taking it.

As you may recall, I began taking them to treat a painful bout of gastritis a few months back. I had found relief after taking the medication daily (once each morning). Anyway, I just spoke with the doctor about whether or not to continue taking this medication and was told to try staying off the drug for a while and see how I do. Since my gastritis seems to be under control and my IBS is finally under control at the moment, I'm hoping my body will be thankful (and not vengeful) for taking one less drug each day.

On a side note, I'm coughing a ridiculously lot since last Thursday. I've had an annoying, dry cough for a few years now, but since last Thursday, it got really frequent. As of Friday, the cough seems to have gotten a tiny bit of a rattle, but only sometimes. I assumed I was getting a bug, but because I am not dealing with any other cold or flu symptoms (from what I can tell as a fibromite) I'm wondering if GERD is the next problem. I think getting off the proton pump inhibitor now could be telling if the cough gets worse.

It would be nice to just have some stable health for a while, but with FM, if it's not one thing it's another.

C'est la vie...

Today is my Third Anniversary

Okay, well, it's not necessarily one I like to celebrate - it's the anniversary of my original Fibromyalgia diagnosis, in 2008. I was first diagnosed with Fibromyalgia by a rheumatologist. As a treatment plan, he put me on Lyrica and then Cymbalta, both with awful results. After that, the young doctor seemed to be out of ideas, so I looked for a more experienced doctor.

I found a doctor who specialized in Fibromyalgia patients, got re-diagnosed (pretty much at every appointment) using the standard pressure-point test, and saw him for a while. He started me on Pristiq to regulate serotonin, and also prescribed sleeping meds to help me sleep. I also had a pain medication at my disposal for managing flare-ups. I made some progress and was glad to have found this doctor. One of the most important things he studied, was a theory that an overabundance of yeast in the digestive tract is the ultimate cause of Fibromyalgia symptoms, and could be better managed or even cured by using anti-fungals and maintaining a strict "yeast-free" diet for at least 6 months, then as needed.

I tried this treatment for 3 months without cheating, because I was very curious to see if this treatment would be effective for me. This meant I could have: no bread, no beer, no sugar, no fermented products, no preservatives or artificial sweeteners, very limited fruit and dairy, and pretty much nothing pre-packaged unless it was whole grain or free of all the other forbidden stuff. I basically ended up eating home-chopped salads with lime juice for dressing, and Triscuits (whole wheat) for lunches, and clean meats and veggies for dinners. I'd snack on veggies and have fruit for dessert. Cheese was a special treat.

Basically, I lost 20 pounds in 3 months, I felt worse painwise, and I was not happy about being a social pariah because I couldn't go out to dinner or eat "regaular" foods with my husband or friends anymore. I was skinny and miserable. The doctor saw my ribs and urged me to quit the diet and eat some ice cream or something. Not long after that, the doctor closed up shop and I was looking for a new fibro doctor again. (I'm not sure I was the cause of the closing up of the shop, but I do wonder sometimes.)

I found a neurologist who works in a pain clinic setting. He is very familiar with Fibromyalgia as well as other chronic pain conditions. This is the doctor I currently see now. He is a great listener and we manage my treatments together. I ask lots of questions, tell him how my health has been between visits, and tell him what I consider most important about my symptoms at the time. If necessary, we change up medications or talk about non-medical treatments that could help. I suspect he doubles as my psychiatrist, as he's usually typing a lot of information as I talk. Thus far, it's been a good match, I think.

So, today, I reflect on my journey from undiagnosed to having been officially diagnosed with Fibromyalgia for three full years now. Back then, I had just learned the word and all the packaged symptoms it entails. I have tried many types of treatments and have experienced many ups and downs. I've learned lots about what it means to have Fibromyalgia and deal with its unpredictable nature. I've also connected with many others like myself through online groups and made great friendships I probably would not have, otherwise.

It's been a relatively short journey thus far, but I have already made much progress. I'm hoping that the remainder of my journey will only get easier with time and experience.

Special thanks to everyone who has contributed to my learning and understanding

along the way. This includes doctors, researchers, nonprofit organizations and their publications, support groups, all my fibrofriends, and last but not least, my friends and family - especially my husband Don - who have been supportive and understanding of my body's changes, even before I could be. I am grateful for you and the help I get from you every single day. I am able to deal with this only because of you.

THANK YOU! 

Tomorrow I Move On to "Baby Steps 10+3"

Baby Steps 10+3 = 10 wall push-ups, 10 sit-ups, 10 leg lifts (using Don's weight bench), 3 arm lifts (each), 3 minutes on elliptical machine.

I've spent about 3 weeks, off and on, on the 10+2 stage, because I was having so much abdominal pain, diarrhea, and feeling like a Mack truck wreck for much of that time. BUT, since I've finally rebounded out of that IBS flare (until I find out otherwise, I'm considering it a severe IBS flare), I'm right back on track with my workout routine, and I think it's been very beneficial to me overall.

Although the weight of the abdominal trouble has finally been lifted and I am still kind of high on the feeling of NOT being in abdominal hell on a constant basis, I do still have Fibromyalgia and the pains and symptoms that go along with it.

Pacing is still an issue: I have spasms in my back if I sit too long at work without getting up and moving around, and the bones in my left arm and both legs have been very achy lately. I am dealing well with these symptoms lately, because, as I mentioned, I'm riding the high of finally being relieved of the digestive wreck that has been taking over my life since August. But I acknowledge that I'm still a chronically ill person and need to take special care not to forget and cause an unnecessary flare up.

So, I am maintaining my promise to myself to continue to slowly progress with my strength and endurance, so I can do more without triggering a flare, feel better about myself, and hopefully (eventually) manage to lose of some of this extra weight I've put on since last year. By going slowly, I've been able to feel good about achieving my daily goal every day, which is a nice feeling, and I've been able to take care to keep within my own abilities without overdoing things.

So, I've moved up from 1 wall push-up and 1 sit-up per day, back in November, all the way up to 10 each every day. After that, I added other types of activities to exercise other muscle groups and add stamina. So, I maintain the wall push-ups at 10 each day and the sit-ups at 10 each day, but now I've added leg lifts (with a very light weight), arm lifts (again, using a very light weight), and minutes on the elliptical machine that I used to use so much more before I got sick.

I've started at 1 each for these three new exercises, but a few days ago, I thought I'd see if I can do 10 of the leg lifts, since it felt too easy to do just 2 every day. The next day, I woke up with both legs feeling this awful ache, deep in the bone, all the way from the hips to the toes. I couldn't even lie in the bed comfortably, no matter how my legs were positioned. BUT, I made it through the day and am doing better. No real flare-up. I'm still doing 10 leg lifts every day now, while maintaining the gradual progression on the arm lifts and elliptical minutes.

Tomorrow, I am starting a week of 10+3. It's been several weeks since I've been able to progress much (other than the crazy step-skipping I did with the leg lifts), but I'm excited to keep increasing and maintaining. I feel stronger and better able to deal with the daily routines than I did before starting the program. I can walk at a pace that doesn't scream "granny" and hold up a crowd (as badly as before) and can more easily handle the daily routine as well as the variable tasks or events that are added to the day now and then.

I'm kinda proud.

In fact, sometimes, after getting all the exercises completed, I give myself a little pat on the back, just to make sure I remember to feel good about something as I start my day. No matter what else happens, I'll know that I, at least, was able to get my workout in.

Success! :)