I had the following tests done to rule out other conditions:
CBC WITH AUTOMATED DIFFERENTIAL
ANA COMMON ANTIBODY SCREEN WITH REFLEX
CRP
ALDOLASE
CPK-CREATINE KINASE
RBC SED RATE
RHEUMATOID FACTOR , IgM, IgG, IgA
URINALYSIS
CYCLIC CITRUL PEP AB
XR FOOT BIL 2V
XR HAND BIL 2V
XR SACROILIAC JNTS MIN 3V
Everything was in normal range except:
1. Urinalysis shows Ketones (40), but normal should be negative
2. Left foot x-ray reveals "Lucent line across the medial aspect of the left navicular bone could be an old fracture or more likely an unfused apophyseal center." The doctor did a quick search and noted "Kohler disease" is what this is called. She examined my foot and pressed on the area to look for pain, but I didn't feel anything unusual there. I guess my bones refused to fuse when I was young.
Additionally, the x-ray of the sacroiliac joints did not find any abnormalities, thus I do not have Sacroiliitis, as my previous doctor clinically diagnosed (and sold me a belt for this condition).
NOTE: My left upper eyelid continues to twitch near the almost constantly throughout the day. This is day 8 of the twitching in the same spot. There is a slight chance of cyclobenzaprint causing twitches as a side effect, but I find it strange that this particular twitch has remained in the same spot and behaved the same way for so long. Usually, I get a twitch here and there and it goes away, maybe comes back in a different place. This is just odd.
Showing posts with label Sacroiliitis. Show all posts
Showing posts with label Sacroiliitis. Show all posts
Monday, April 2, 2012
Sunday, October 16, 2011
Hip and Low Back Pain Flare Up
For the past month or so, I've been experiencing an increase in pain daily pain in my left hip and lower back up. The pain started up before my last visit (late August) to the Fibromyalgia specialist I see regularly. I remember indicating that the sacroiliitis in my left hip seemed to be acting up since the previous appointment with him, and may be contributing to other pains in my left side, up my back and down my leg and into my foot, depending on the day. I'd also been having daily attacks of sciatic pain, which favors the back of my right thigh. The doctor had asked me if I was interested in doing some tests to investigate these issues, and at the time, I quickly remembered how all my tests seem to come back negative no matter how crappy I feel. (Such is the life of a fibromite. Test results come back "normal" for almost everything that is checked.) I thought about the liklihood that nothing would be found while I'd have to schedule and endure the tests, and decided not to bother.
Just about the next day or so after that appointment, I'd begun to regret my decision to forgo hip testing. I had started to experience new, disturbing pain attacks in my lower back, near and above the left hip. I would notice them while working diligently, usually late afternoons. I was always sitting in my office chair in the office when these attacks wold come on and they could not be ignored. These are the kind of sudden, intensely painful moments that can make you jump a bit or even shriek from the surprise. The first one, I figured, was an odd moment that would pass after some time and allow me to continue living life in the new normal level of pain I've come to expect. Fibromyalgia is highly unpredictable and I have come to expect strange, painful surprises as part of the diagnosis. However, the attacks started forming a daily, troubling pattern. After a few days of this same kind of agonizing attacks, I started to wonder if something new was breaking in my body. I called my doctor's office and explained that I was hoping to take the doctor up on the offer for getting some testing done on my hip. I expected a call back from the office the next day or so, after the message was relayed to my doctor, but I hadn't heard back in weeks. I ended up calling back again when a few weeks had passed and the pain was still occurring, and evolving into a constant ache in between attacks. I don't know what happened, but the doctor called me back himself after this call and discussed my pain and concerns with me, to try to determine what kind of test might be most effective. We settled on a couple of MRI studies of my sacroiliac and hip, which I promptly scheduled with my local hospital.
After finally getting those MRIs done of my hips just last Wednesday, I have received the results, which (drum roll, please) came back "normal" (other than the presence of my uterine fibroid, which I already knew about).
The interesting thing now is that I'm confused about the diagnosis of sacroiliitis. The doctor who ordered these last MRIs for me (at my request) is the same one who diagnosed sacroiliitis in my left hip. He made the diagnosis based on my symptoms and physical examinations. Now I don't know if these MRIs show that I don't have sacroiliitis, or that I never did. I will be discussing these tests with my doctor in just a few days, during my next regular appointment. Hopefully, he'll be able to help me understand what is really happening in my hips and give me some kind of advice on how to help alleviate it, or at least reduce it.
By coincidence, the muscle relaxant that I'd been taking twice a day (sometimes thrice a day) for a long time now, to help with my Myofascial Pain problems, had suddenly become back-ordered by the pharmaceutical manufacturer, for no specified reason and for an indefinite amount of time. That alone was odd, but because of this issue, my refill was switched to a different brand of muscle relaxant to substitute. I was not happy about that, as my body is sensitive to drug changes and who knows what side effects might result from this change? I was apprehensive, but given the circumstances, accepted the change and have been taking the new brand since late September. The pill design is quite awful, but I figured it would do just as good a job as my previous brand nonetheless. I'd done some research about the effectiveness and came to the same conclusions my doctor probably did - they are very similar drugs and should work in essentially the same way.
The reason I mention all this in this same post is that I started to wonder if maybe the new muscle relaxant might be contributing to my new back pain problems. Perhaps it's insufficient for my body's needs. Perhaps my body is going through an adjustment period. I've been very consistently hurting a lot more in the lower back area for the past few weeks now, not just the left side. I have more trouble bending and straightening back up, and I have more difficulty trying to get comfortable in any position now.
After looking at my notes, though, and discovering the timing of these events, I cannot conclusively determine any sort of relationship between this medication change (let's not forget I switched to Savella last July and that was quite the ordeal!) and the onset of this new, odd, back/hip pain stuff going on. Although, now that I've thought about it, there is still the possibility that the Savella switch could have been some sort of trigger to this new problem. I have been sleeping a lot better since the Savella settled in, so I assumed it was a change for the better from Pristiq. However, SNRIs like these meds don't just affect one or two things in the body - they affect things even scientists don't yet understand.
I'm lost right now and full of questions. This new back pain could have to do with a change in seasons, or just be part of the randomly nonsensical changes that happen with Fibromyalgia. I don't know. I don't know if my doctor will know. I don't know if anyone knows. All I know right now is that I'm in pain and I need to stop typing and get up for a bit. I may need to strengthen some of my core muscles. It's not easy to strengthen muscles with health conditions that can discourage exertion with pain and exhaustion that can stem from a molecular level, in the mitochondria.
I will do my best to remain active as I can and keep living life to the best of my ability, despite these ever-changing health challenges.
Just about the next day or so after that appointment, I'd begun to regret my decision to forgo hip testing. I had started to experience new, disturbing pain attacks in my lower back, near and above the left hip. I would notice them while working diligently, usually late afternoons. I was always sitting in my office chair in the office when these attacks wold come on and they could not be ignored. These are the kind of sudden, intensely painful moments that can make you jump a bit or even shriek from the surprise. The first one, I figured, was an odd moment that would pass after some time and allow me to continue living life in the new normal level of pain I've come to expect. Fibromyalgia is highly unpredictable and I have come to expect strange, painful surprises as part of the diagnosis. However, the attacks started forming a daily, troubling pattern. After a few days of this same kind of agonizing attacks, I started to wonder if something new was breaking in my body. I called my doctor's office and explained that I was hoping to take the doctor up on the offer for getting some testing done on my hip. I expected a call back from the office the next day or so, after the message was relayed to my doctor, but I hadn't heard back in weeks. I ended up calling back again when a few weeks had passed and the pain was still occurring, and evolving into a constant ache in between attacks. I don't know what happened, but the doctor called me back himself after this call and discussed my pain and concerns with me, to try to determine what kind of test might be most effective. We settled on a couple of MRI studies of my sacroiliac and hip, which I promptly scheduled with my local hospital.
After finally getting those MRIs done of my hips just last Wednesday, I have received the results, which (drum roll, please) came back "normal" (other than the presence of my uterine fibroid, which I already knew about).
The interesting thing now is that I'm confused about the diagnosis of sacroiliitis. The doctor who ordered these last MRIs for me (at my request) is the same one who diagnosed sacroiliitis in my left hip. He made the diagnosis based on my symptoms and physical examinations. Now I don't know if these MRIs show that I don't have sacroiliitis, or that I never did. I will be discussing these tests with my doctor in just a few days, during my next regular appointment. Hopefully, he'll be able to help me understand what is really happening in my hips and give me some kind of advice on how to help alleviate it, or at least reduce it.
By coincidence, the muscle relaxant that I'd been taking twice a day (sometimes thrice a day) for a long time now, to help with my Myofascial Pain problems, had suddenly become back-ordered by the pharmaceutical manufacturer, for no specified reason and for an indefinite amount of time. That alone was odd, but because of this issue, my refill was switched to a different brand of muscle relaxant to substitute. I was not happy about that, as my body is sensitive to drug changes and who knows what side effects might result from this change? I was apprehensive, but given the circumstances, accepted the change and have been taking the new brand since late September. The pill design is quite awful, but I figured it would do just as good a job as my previous brand nonetheless. I'd done some research about the effectiveness and came to the same conclusions my doctor probably did - they are very similar drugs and should work in essentially the same way.
The reason I mention all this in this same post is that I started to wonder if maybe the new muscle relaxant might be contributing to my new back pain problems. Perhaps it's insufficient for my body's needs. Perhaps my body is going through an adjustment period. I've been very consistently hurting a lot more in the lower back area for the past few weeks now, not just the left side. I have more trouble bending and straightening back up, and I have more difficulty trying to get comfortable in any position now.
After looking at my notes, though, and discovering the timing of these events, I cannot conclusively determine any sort of relationship between this medication change (let's not forget I switched to Savella last July and that was quite the ordeal!) and the onset of this new, odd, back/hip pain stuff going on. Although, now that I've thought about it, there is still the possibility that the Savella switch could have been some sort of trigger to this new problem. I have been sleeping a lot better since the Savella settled in, so I assumed it was a change for the better from Pristiq. However, SNRIs like these meds don't just affect one or two things in the body - they affect things even scientists don't yet understand.
I'm lost right now and full of questions. This new back pain could have to do with a change in seasons, or just be part of the randomly nonsensical changes that happen with Fibromyalgia. I don't know. I don't know if my doctor will know. I don't know if anyone knows. All I know right now is that I'm in pain and I need to stop typing and get up for a bit. I may need to strengthen some of my core muscles. It's not easy to strengthen muscles with health conditions that can discourage exertion with pain and exhaustion that can stem from a molecular level, in the mitochondria.
I will do my best to remain active as I can and keep living life to the best of my ability, despite these ever-changing health challenges.
Tuesday, September 6, 2011
ow oW OW!
I just got through telling my fibro doctor last week that I don't want to treat my sciatic pain with medication because it's so unpredictable and quick, that I am just trying to cope with the pain as it occurs as best as I can and wait until the lightning pains subside. I never know if it's going to last for seconds, minutes, or hours, but most often it's seconds. Most frequently, the sciatic pain is in the back of my right thigh and buttock, no lower than my knee and usually no higher than my butt. I take enough pills and meds for the fibromyalgia, myofascial pain, sleep problems, asthma, and all that stuff. I figured one more pill might not be a big deal, but it's money I likely won't be able to judge as well spent if I can't tell whether it's preventing or reducing these quick pains. Not worth it unless it starts firing constantly again, like it did right after the car accident that seems to have started all these ills.
My sacroiliitis, however, is more on my left side, and in my hip, around to my lower back on the left side. Well, right this second, my left hip and lower back are firing lightning-style pains into me and making me jerk in surprise, much like the sciatica usually does. This is not good. The left hip usually aches in a dull, inflammatory kind of way, sometimes more than others. What is this new, intensely painful shock-like pain now? Is this sacroiliitis or is this some variation of sciatica on the other side? Can sciatica fire upwards from the buttocks, rather than just down into the leg? I've had my left leg feel the same kind of lightning pains as the right, but much less often than the right. And right now, the leg is not being affected. It's very much nerve-like pain and I feel it deep in the pelvic bone and up a bit in the back.
When my doctor and I discussed both of these problems a week ago, he poked and prodded me a lot to see how my nerves, reflexes, strength, and tenderness are in the piriformis and sacroiliac areas, down through my legs and feet. The tenderness testing supported his left-side sacroiliitis diagnosis and the sciatic nerve impingement on the right by the piriformis muscle (a thin muscle that stretches diagonally across each buttock). (Wow, I've never the word "buttock" so many times in one post before.) Anyway, he also made a passing suggestion, before all the poking around, that I may want to get (another) MRI or scan of my sciatic nerve areas, in case there is something really wrong.
Since this isn't really a new symptom, and since tests are a pain in the buttocks (hee) for chronically ill people like myself, I declined. Now I'm not sure I should have declined so quickly. I guess I'm tired of having to go through all the trouble of making the test appointment, scheduling my work around it, enduring the IV poking (which almost always takes multiple tries) and waiting around for the results, which usually find nothing of any interest. You other fibro people reading this, I know you know where I'm coming from. You want to hear something other than "everything looks fine" after being tested. I don't think they have the right tests out there for us yet. Until then, it feels like a bunch of trouble for nothing.
Anyway, if you can relate to these new, shock-like pains that are firing from the hip up into the lower back, toward one side, let me know about it. If I have a hint of what it's called or how to sit or what to do to ease or prevent it, I'll be happy.
My sacroiliitis, however, is more on my left side, and in my hip, around to my lower back on the left side. Well, right this second, my left hip and lower back are firing lightning-style pains into me and making me jerk in surprise, much like the sciatica usually does. This is not good. The left hip usually aches in a dull, inflammatory kind of way, sometimes more than others. What is this new, intensely painful shock-like pain now? Is this sacroiliitis or is this some variation of sciatica on the other side? Can sciatica fire upwards from the buttocks, rather than just down into the leg? I've had my left leg feel the same kind of lightning pains as the right, but much less often than the right. And right now, the leg is not being affected. It's very much nerve-like pain and I feel it deep in the pelvic bone and up a bit in the back.
When my doctor and I discussed both of these problems a week ago, he poked and prodded me a lot to see how my nerves, reflexes, strength, and tenderness are in the piriformis and sacroiliac areas, down through my legs and feet. The tenderness testing supported his left-side sacroiliitis diagnosis and the sciatic nerve impingement on the right by the piriformis muscle (a thin muscle that stretches diagonally across each buttock). (Wow, I've never the word "buttock" so many times in one post before.) Anyway, he also made a passing suggestion, before all the poking around, that I may want to get (another) MRI or scan of my sciatic nerve areas, in case there is something really wrong.
Since this isn't really a new symptom, and since tests are a pain in the buttocks (hee) for chronically ill people like myself, I declined. Now I'm not sure I should have declined so quickly. I guess I'm tired of having to go through all the trouble of making the test appointment, scheduling my work around it, enduring the IV poking (which almost always takes multiple tries) and waiting around for the results, which usually find nothing of any interest. You other fibro people reading this, I know you know where I'm coming from. You want to hear something other than "everything looks fine" after being tested. I don't think they have the right tests out there for us yet. Until then, it feels like a bunch of trouble for nothing.
Anyway, if you can relate to these new, shock-like pains that are firing from the hip up into the lower back, toward one side, let me know about it. If I have a hint of what it's called or how to sit or what to do to ease or prevent it, I'll be happy.
Sunday, August 7, 2011
Sacroiliitis Acting Up
I have been hurting in the hips and back, as well as my knee and foot for the past week. It seems to do whichever pain it feels like for the moment but something is always wrong.
I have even had to use my cane at work one day when the bottom of my foot could no longer deal with the pressure of standing or walking on it well. I was told I have sacroiliitis in my left hip, but if -itis means infection or at least inflammation, why is this not more urgent than it seems to be to my doctor? My only treatment thus far has been a belt to keep the joints secure and the occasional NSAID, which I'm not thrilled about using after the gastro problems I dealt with a few months ago.
I've been having hot flushing in my face in recent days, especially in the evenings, and it's not necessarily due to the hot weather, as I'm keeping cool indoors with air conditioning and fans. I'm concerned about something ugly happening inside my joints and spreading for some reason.
The sciatica pains have been firing up a bit lately, too. I'm sure it's not a coincidence, since they are all around the hip area.
I've been very uncomfortable with sitting or standing lately, and lying down has been the best position I can find while dealing with these pains, but I'd like to figure out if there's something that needs to be addressed. I hate the thought of having to deal with some emergency later because all the early clues were missed.
I have even had to use my cane at work one day when the bottom of my foot could no longer deal with the pressure of standing or walking on it well. I was told I have sacroiliitis in my left hip, but if -itis means infection or at least inflammation, why is this not more urgent than it seems to be to my doctor? My only treatment thus far has been a belt to keep the joints secure and the occasional NSAID, which I'm not thrilled about using after the gastro problems I dealt with a few months ago.
I've been having hot flushing in my face in recent days, especially in the evenings, and it's not necessarily due to the hot weather, as I'm keeping cool indoors with air conditioning and fans. I'm concerned about something ugly happening inside my joints and spreading for some reason.
The sciatica pains have been firing up a bit lately, too. I'm sure it's not a coincidence, since they are all around the hip area.
I've been very uncomfortable with sitting or standing lately, and lying down has been the best position I can find while dealing with these pains, but I'd like to figure out if there's something that needs to be addressed. I hate the thought of having to deal with some emergency later because all the early clues were missed.
Monday, December 14, 2009
Bunny Versus Human Resources
Remember "Bunny"? It's the homemade heat wrap I created from a soft pair of socks, some dry, white rice, and a little bit of sewing. I pop it into the microwave for a minute and use it to soothe my neck, shoulder, back, hip, or whatever hurts most. A few months ago, I brought Bunny to work so I would always have it ready at the office. I have been using it all day long lately and it has been very useful in keeping me just this side of sane while trying to get my work done while dealing with the usual plethora of symptoms from Fibromyalgia, Chronic Myofascial Pain, Sacroiliitis, and whatever other typical things might be going on with me that minute (headaches/migraines, nausea, fatigue, IBS, etc.).
Last Friday, without any warning, I received the following e-mail message from the Human Resources Manager at my work:
"Hi there;
As you know, with cold and flu season upon us, people are generally germaphobic (with good reason). I've been asked to respectfully ask you to not warm up your neck warmer in the microwave anymore.
My apologies for the inconvenience."
I just read it over and over, stunned. My inner frustrations raged within me. There was no discussion or hint of any sort of a problem - just the e-mail.
Okay, I thought, so maybe it's not apparent that I'm using this thing out of medical necessity, rather than for some sort of luxury or convenience comfort item. I have mentioned my Fibromyalgia to the HR manager in the past, but it's a complicated condition and without having to deal with it herself, perhaps she'd forgotten. After all, I "don't look sick". Taking the high road, I decided to give her the benefit of the doubt and explain to her, in person, that I do need this heat wrap.
I walked into her office with Bunny in my hand and asked her "are you grossed out by this?" before she had any time to think about it. She assured me that she is not. She said that she had seen me walking around with it on my neck and never gave it a second thought, but she'd heard some offhand remarks from one or two people about it. Then she got this "complaint" from the still-anonymous person. I made it abundantly clear to her that Bunny is what allows me to work - I need to be able to continue using it, otherwise I would need to use a heating pad or something (however a heating pad is not as versatile as Bunny is for my ever-changing pain locations). Bunny is the best option for my shoulder and neck pain, as well as my Sacroiliitis hip pain, since heating pads can't really get around those corners as well.
I wanted to be reasonable, because I know it's not easy to be the HR person involved in a dispute like this. (Our company actually sells liability insurance, so it's even more apparent that disputes between coworkers can turn very ugly and expensive.) She came up with the idea to use a Ziploc bag or some other sort of containment for the rice-sock for microwave heating, but needed to discuss the idea with another manager first. Fine, fine - whatever it takes to keep Bunny available to me. I even agreed not to use the microwave until I heard back from her.
Hours went by and apparently she'd forgotten to have that discussion until she saw me in the Ladies' room. She announced to me that she forgot and was reminded by my presence. I'm sure my expression was pathetic enough, but I also uttered a genuinely disbelieving "what?!" and my pleading "please help me" to make it clear to her that I was making a real sacrifice during all this nonsense. I also replied to the e-mail she sent me, so she would remember that I was waiting for her:
"Please let me know ASAP on what conclusion you reach on this. I'm always in pain and not having my warmed rice-sock available to me is not helping. :(
Thanks for your help. Let me know if you need anything else from me, or want to discuss this further."
Well, when I finally heard back from her, it was, again, in the form of e-mail...
"Lets do this...first of all, you still have access to the 4th floor, so go ahead and use the microwave down there - chance of being seen is far less. Secondly, just for perception sake, could you put it/wrap it in something (like a plastic bag or other) when microwaving it?
Thanks."
She had mentioned, in an earlier discussion, that another microwave is available in another, very small office of ours. It's on a different floor but I really think that's not fair to me at all. The way I've been doing the Bunny warm-ups in the past is by putting it around my neck, grabbing my empty cup, and stopping at the kitchen on the way to the nearby washroom. I'd pop Bunny into one of the two microwaves in the kitchen, set down my cup, take my washroom break, then return to fill my cup and take Bunny back to my desk. I usually lean against Bunny in the chair for my back, or put it wherever the heat is most needed.
Her proposed change would entail my taking my key card with me (which I keep in my purse, so I never forget it), some sort of plastic bag or whatever, the cup, and Bunny when I need to take a washroom break. I'd have to take the elevator down to the fourth floor (we're on the eighth floor), swipe my key card to enter the office of three people I hardly know, put Bunny in a bag, use their microwave (while they probably wonder what I'm doing there at all), then use the bathroom on either floor, return to the kitchen on the eighth floor, fill my cup, and return to my desk.
Does this seem reasonable to you?
This is all for the sake of appeasing some anonymous coworker who apparently does not understand the germ-killing powers of the microwave oven. This also puts me in the awkward position of having to kind of sneak the whole heating thing from someone who has not been identified to me, even though that person will very likely still see me using Bunny around the office, especially if it is a coworker who works near me or on the way to the kitchen and washroom.
Well, since I still wanted to remain reasonable and willing to cooperate, I decided to visit the fourth floor and give it a try. Firstly, I had no container or acceptable bag. What's acceptable anyway? I'm dealing with erroneous assumptions of someone who won't tell me what exactly is wrong with putting my rice-sock in the microwave in the first place. I asked the HR manager for a bag or something acceptable, since she's my only connection to the complainer. She, also, had nothing handy for me to use. She made and executive decision to allow me to use the fourth floor microwave that afternoon without any sort of bag or cover.
Well, I went to the fourth floor office and guess what - it was locked. I couldn't even use my key card to get in. So much for that plan... (You can probably imagine my frustration at this point.) I was sick of going to HR all day long and decided to skip it and just to bring in my own container on Monday morning. I would still refrain from using the microwave without any container around Bunny, in case mysterious idiot were to see me and report to HR that I was not compliant.
So I just did without - for the idiot's and HR's sake. Looking back, I should have just used our microwave one last time (for my sake), but I'm such a nice person that I didn't risk causing any further trouble that day. I was already very stressed and distracted already, and I didn't want to add any more crap to the pile. (I was actually hoping that the stress could trigger a palpitation episode, so I could finally make use of this heart monitor of mine, but no luck there.)
This is all so very stupid. I announced this to the HR manager during my most recent discussion with her about all this. I even sent her a link to an article about microwaving the germs out of kitchen sponges, since I had mentioned this to her earlier and she said she'd never heard of anyone doing that. I do this at home all the time and I thought most people did as well, but apparently that's not the case. (She did not reply to that last e-mail.)
Well, today I brought in a large, oblong Glad container that is now dedicated for use with Bunny in the public microwave. It seems to be just the right size to accommodate the whole thing and even allow me to close the lid on it. I tested it at home a few times with success. I have already used it several times today on my floor, here, at the office. I have had no comments, strange looks (that I noticed anyway) or interactions with HR personnel (so far), so I'm hoping this is the end of this very stupid problem.
It still bugs me that the person who complained was given so much power over me. Apparently, being misinformed about things allows one the right to remain anonymous, while greatly inconveniencing anyone they want. That kinda sucks, doesn't it? What if I had complained to HR that someone's checkered shirt gave me migraine auras, or that someone's perfume gave me headaches and made me nauseous, or that the conversations that people have around me distract me further from my work? These are examples of real problems for me, yet I have decided that it would unreasonable for me to go to HR and formally complain about these things. I've kept them personal or just dealt with them on my own. I don't want to be seen as an unreasonably high-maintenance employee. Nobody appreciates this, I'm sure, but this is how it goes. We all know that life is unfair.
Someday, I may have to deal with the very real possibility that I am physically unable to do full-time work. I am barely able to maintain my job now, but press on, for multiple reasons, including:
- health insurance benefits (very important),
- self-esteem and feelings of self-worth,
- distraction from my symptoms,
- keeping me in driving practice, and
- keeping my brain as fit as possible.
It's complaints like this whole Bunny thing that remind me how fortunate I am to be able to work at all, and that I may have to cut back drastically on expenses to live without the insurance benefits and income that I enjoy today. I know many of my fibromite friends are not so lucky, and are struggling with their symptoms and financial burdens.
I'm not looking forward to the day when I have to decide to stop working full-time, nonetheless, I know it is a decision I will likely have to face someday. Until then, I am going to do what I can to help keep myself in at least the minimally acceptable condition that allows me to continue to feel somewhat human in this world. If Human Resources, some ignorant coworker, or anyone else stands in my way, they better be ready for a fight because I will not be defeated easily.
Thursday, October 15, 2009
Another Diagnosis: Sacroiliitis
I met with my fibro doctor last Tuesday. Luckily, I had the forethought to try to jot things to discuss down on paper, starting a week or so before my appointment. I had a whole page of topics! Here's a wrap-up of the major points we covered.
I explained about my hip and lower back issues. The doctor diagnosed Sacroiliitis and gave me a special velcro belt that helps tighten the hips. It feels good. I am to wear it as long as it feels comfortable, to help align the sacroiliac joints. He even measured my legs to see if they might be different sizes, which can lead to this problem, but they are the same length. He mentioned that Sacroiliitis can be a symptom of Ankylosing Spondylitis, but didn't seem too concerned at this point. (I'm still concerned, but we'll see how it goes.)
I told him about my screaming left knee pain that comes on sometimes, especially in the evenings, while I'm just sitting on the couch. He named it Patella C-something (I couldn't spell it - maybe this is it?) and said to avoid sitting on my leg or legs and to also avoid crossing my legs while I sit. These are very hard on the knees, he says. He also said skipping steps while going up stairs is really bad for that, too. I definitely don't skip steps, but I noticed this week that I do try to cross my legs a lot while at work. I've been stopping myself, now that I know it's bad for my knee.
I told him about my frequent presyncope (feeling faint) and how it happens when I change directions or speeds. He was initially concerned about POTS, but he tested my resting blood pressure (which was normal - not low) and pulse before and after some mild exercises. My resting pulse was somewhat high at 92, but the increase after activity seems normal. I can't remember exactly, but I think he attributed the high resting rate (and my sweating) to the Pristiq, and the Doxepin may have something to do with the dizziness and lightheadedness. At any rate, he did not seem too worried about it after conducting the little test. I guess I still don't know exactly what's going on with this.
Doxepin is the stuff I decreased from 2 capsules nightly to 1 capsule nightly, because I was getting a crazy sweet tooth and getting fat. However, it should help me with pain, so he suggested I add increasing back to 2 for 5-7 days to my action items in my WRAP, especially if I notice I'm not getting sleep. He also said I could increase it for worsening of pain, especially in the wintertime, when fibro tends to get worse. I just need to be aware of the side effects and keep them in check. I am currently making an effort to eat healthy foods and cut down on indulgent sweets. I actually lost a couple pounds counting calories, last time I checked.
He wasn't too worried about my using Tramadol for pain about once daily. I have been taking it most days in the mornings, when I feel worst. He says that's not a big deal.
I didn't realize it until it was too late, but I completely forgot to mention the crazy tinnitus going on in my left ear all the time. Oh well, I'll jot it down for the next time.
I guess that's it for now. I just wanted to write something down to help digest it all, and share it with you at the same time. :)
My next appt. is Tue. 12/22/09 @ 8:20am.
I told him about my screaming left knee pain that comes on sometimes, especially in the evenings, while I'm just sitting on the couch. He named it Patella C-something (I couldn't spell it - maybe this is it?) and said to avoid sitting on my leg or legs and to also avoid crossing my legs while I sit. These are very hard on the knees, he says. He also said skipping steps while going up stairs is really bad for that, too. I definitely don't skip steps, but I noticed this week that I do try to cross my legs a lot while at work. I've been stopping myself, now that I know it's bad for my knee.
I told him about my frequent presyncope (feeling faint) and how it happens when I change directions or speeds. He was initially concerned about POTS, but he tested my resting blood pressure (which was normal - not low) and pulse before and after some mild exercises. My resting pulse was somewhat high at 92, but the increase after activity seems normal. I can't remember exactly, but I think he attributed the high resting rate (and my sweating) to the Pristiq, and the Doxepin may have something to do with the dizziness and lightheadedness. At any rate, he did not seem too worried about it after conducting the little test. I guess I still don't know exactly what's going on with this.
Doxepin is the stuff I decreased from 2 capsules nightly to 1 capsule nightly, because I was getting a crazy sweet tooth and getting fat. However, it should help me with pain, so he suggested I add increasing back to 2 for 5-7 days to my action items in my WRAP, especially if I notice I'm not getting sleep. He also said I could increase it for worsening of pain, especially in the wintertime, when fibro tends to get worse. I just need to be aware of the side effects and keep them in check. I am currently making an effort to eat healthy foods and cut down on indulgent sweets. I actually lost a couple pounds counting calories, last time I checked.
He wasn't too worried about my using Tramadol for pain about once daily. I have been taking it most days in the mornings, when I feel worst. He says that's not a big deal.
I didn't realize it until it was too late, but I completely forgot to mention the crazy tinnitus going on in my left ear all the time. Oh well, I'll jot it down for the next time.
I guess that's it for now. I just wanted to write something down to help digest it all, and share it with you at the same time. :)
My next appt. is Tue. 12/22/09 @ 8:20am.
Thursday, September 10, 2009
Am I "Hip"? (Sacroiliitis and Ankylosing Spondylitis)
What a couple of tongue-twisters, eh? I learned about these two conditions recently while looking into possible causes for my recent bouts of pain in my left hip area.
The left side of my very low back and hip, down to the back of my left thigh, have been bothering me a lot lately. My last flare, which lasted about two weeks, centered predominantly on pain stemming from, and probably referring from, the top of my left hip bone. I remembered my doctor telling me that my sacroiliac is probably to blame for what had been diagnosed as sciatica, but that pain is sudden, lightning-like, and remarkably intense (enough to startle me visibly). I usually get what I understand to be sciatic pain in the back of my right thigh, but similar lightning-like pains have jolted me under my right forearm and wrist, and also the right side of my neck.
Getting back to the left side, I went on a research hunt for information regarding the sacroiliac. The following link has a great description of sacroiliitis (inflammation of the sacroiliac) and its symptoms. There is also a nice graphic showing the sacroiliac joints. Basically, they look like two fractures in top area of the hip bones, connecting the sacrum (tailbone) and each ilium (hip bones).
Sacroiliitis Info
Except for the eye problems (though I have had some minor problems within the last few months, if I remember correctly), the short list of symptoms for sacroiliitis seems to fit. I have been "hot and cold at the same time" as I like to describe it, for pretty much most of every single day for months now. I shiver at the slightest breeze, even, and especially, if I'd just been sweating from feeling too hot. At night, I pile on three layers of sheet, blanket, and comforter to warm up, then wake up in a pool of sweat. I simply cannot sleep if I shiver. Could this be the "fever that appears quickly"? I can only speculate.
The rest of the symptoms listed surround pain. Of course, pain and weird symptoms are already part of the Fibromyalgia, so it's hard to say with any certainty that another condition like this could be overlapping with if the symptoms include pain.
Ah, such is the life of a fibromite: always wondering and trying to hunt down answers.
The Ankylosing Spondylitis (AS) research actually collided with my Sacroiliitus research. I remember seeing "Ankylosing...(something)" in Fibromyalgia support groups and other forums online. I had no idea what it was and could hardly remember the name, but, skilled little researcher that I am, I found it and learned all about it.
Ankylosing Spondylitis (AS) Info
"Ankylosing spondylitis is a chronic inflammatory disease that primarily causes pain and inflammation of the joints between the vertebrae of your spine and the joints between your spine and pelvis (sacroiliac joints). However, ankylosing spondylitis may also cause inflammation and pain in other parts of your body as well."
It seems to me that sacroiliitis could be considered an earlier stage of AS, if it were to progress. AS can result in bony growth at the vertebrae, causing fusion of the bones. In turn, this means the poor AS patient has reduced mobility and a higher chance of fracture. I've seen some very drastic photos of people with very advanced AS (AKA "Bamboo Spine" - yikes!), and they are very hunched over. VERY. (Don't look unless you can handle it.)
It's a scary prospect to think about that I may have or be on my way to having either of these conditions, but I've always been ready to face my fears in favor of responsible action. I can handle the diagnosis; I just want to do what I should to keep things from getting worse and (dare to dream) possibly heal or reverse whatever is wrong.
Since I had had many MRIs, CT scans, and x-rays in the last few years, (and who among us fibromites hasn't?) I also started reviewing my own test images to see if any differences can be spotted at the sacroiliac joints or spinal bones. From what I've read, these conditions are not easily spotted until several years of damage has already occurred, and there is no difinitive testing that can concretely diagnose either. Figures, right?
Well, the good news is, my untrained eyes do not notice any obvious bony growths or inflammation. Then again, I didn't have the appropriate tests, targeting the specific areas. The picture on the left is an x-ray taken during a CT scan on 3/8/08. The picture on the right is an x-ray taken during another CT scan on 6/5/09. You can clearly see the sacroiliiac joints in the first picture, but it's a bit harder to see in the second one. Both times I had to drink that nasty gastric dye which makes my colon look nice and bright, but blocks the bones a bit in the later x-ray.
Anyway, I will have to mention my hip pains to my doctor the next time I see him, in case he can find any reason to worry about either of these conditions (or anything else). If you have had either of these conditions or want to add any comments about any of this, please feel free. I love the feedback and would like to know more about the prevalence of these conditions among Fibromyalgia patients.
The left side of my very low back and hip, down to the back of my left thigh, have been bothering me a lot lately. My last flare, which lasted about two weeks, centered predominantly on pain stemming from, and probably referring from, the top of my left hip bone. I remembered my doctor telling me that my sacroiliac is probably to blame for what had been diagnosed as sciatica, but that pain is sudden, lightning-like, and remarkably intense (enough to startle me visibly). I usually get what I understand to be sciatic pain in the back of my right thigh, but similar lightning-like pains have jolted me under my right forearm and wrist, and also the right side of my neck.
Getting back to the left side, I went on a research hunt for information regarding the sacroiliac. The following link has a great description of sacroiliitis (inflammation of the sacroiliac) and its symptoms. There is also a nice graphic showing the sacroiliac joints. Basically, they look like two fractures in top area of the hip bones, connecting the sacrum (tailbone) and each ilium (hip bones).
Sacroiliitis Info
Except for the eye problems (though I have had some minor problems within the last few months, if I remember correctly), the short list of symptoms for sacroiliitis seems to fit. I have been "hot and cold at the same time" as I like to describe it, for pretty much most of every single day for months now. I shiver at the slightest breeze, even, and especially, if I'd just been sweating from feeling too hot. At night, I pile on three layers of sheet, blanket, and comforter to warm up, then wake up in a pool of sweat. I simply cannot sleep if I shiver. Could this be the "fever that appears quickly"? I can only speculate.
The rest of the symptoms listed surround pain. Of course, pain and weird symptoms are already part of the Fibromyalgia, so it's hard to say with any certainty that another condition like this could be overlapping with if the symptoms include pain.
Ah, such is the life of a fibromite: always wondering and trying to hunt down answers.
The Ankylosing Spondylitis (AS) research actually collided with my Sacroiliitus research. I remember seeing "Ankylosing...(something)" in Fibromyalgia support groups and other forums online. I had no idea what it was and could hardly remember the name, but, skilled little researcher that I am, I found it and learned all about it.
Ankylosing Spondylitis (AS) Info
"Ankylosing spondylitis is a chronic inflammatory disease that primarily causes pain and inflammation of the joints between the vertebrae of your spine and the joints between your spine and pelvis (sacroiliac joints). However, ankylosing spondylitis may also cause inflammation and pain in other parts of your body as well."
It seems to me that sacroiliitis could be considered an earlier stage of AS, if it were to progress. AS can result in bony growth at the vertebrae, causing fusion of the bones. In turn, this means the poor AS patient has reduced mobility and a higher chance of fracture. I've seen some very drastic photos of people with very advanced AS (AKA "Bamboo Spine" - yikes!), and they are very hunched over. VERY. (Don't look unless you can handle it.)
It's a scary prospect to think about that I may have or be on my way to having either of these conditions, but I've always been ready to face my fears in favor of responsible action. I can handle the diagnosis; I just want to do what I should to keep things from getting worse and (dare to dream) possibly heal or reverse whatever is wrong.
Since I had had many MRIs, CT scans, and x-rays in the last few years, (and who among us fibromites hasn't?) I also started reviewing my own test images to see if any differences can be spotted at the sacroiliac joints or spinal bones. From what I've read, these conditions are not easily spotted until several years of damage has already occurred, and there is no difinitive testing that can concretely diagnose either. Figures, right?Well, the good news is, my untrained eyes do not notice any obvious bony growths or inflammation. Then again, I didn't have the appropriate tests, targeting the specific areas. The picture on the left is an x-ray taken during a CT scan on 3/8/08. The picture on the right is an x-ray taken during another CT scan on 6/5/09. You can clearly see the sacroiliiac joints in the first picture, but it's a bit harder to see in the second one. Both times I had to drink that nasty gastric dye which makes my colon look nice and bright, but blocks the bones a bit in the later x-ray.
Anyway, I will have to mention my hip pains to my doctor the next time I see him, in case he can find any reason to worry about either of these conditions (or anything else). If you have had either of these conditions or want to add any comments about any of this, please feel free. I love the feedback and would like to know more about the prevalence of these conditions among Fibromyalgia patients.
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