I've been remiss in posting. I have been occupied with other things. It occurred to me, however, that I should update you on the results of last weeks meeting with the rheumatologist (who shall henceforth be known as Dr. L, because it's much shorter) and getting my test results back.
You know it's not a good thing when the first two sentences out of his mouth after greeting you are "Well, you have the lowest Vitamin D level I've seen in a long time. And interestingly enough, your ultrasound..." at which point my brain began spinning and I had a hard time hearing the rest. Turns out there is indeed fluid in the bones of my wrists. They aren't going to do anything about that right now, which probably means there isn't much and that it's probably related to new issue #2: I have arthritis in the base of my spine. Technically it's called Spondyloarthropathy. There are several different things under this umbrella, and I have a call in to find out EXACTLY what I have. Fibro fog was kicking my ass the day he told me all this, and my brain was screaming at me, so I really didn't process much.
I am now on a drug called sulfasalazine for the arthritis. I was vastly amused at Dr. L when he asked if we were trying to conceive. I informed him that no, we were infertile. He looked a little surprised and then relieved, as he proceeded to tell me that was good because this drug would make me infertile. HA! Even if I wasn't already I am now! It's reversible, though, which also amused me and got me to thinking: If this is suppressing my fertility, if I ever go off it will my fertility go into overdrive? Will I end up getting pregnant at 33 like my mother predicted? That means some time this year, of course, since I turn 33 on Sunday. If she's right, though, I am seriously taking my pee-stick and marching my ass down to the cemetery and scolding her for being right...again.
Also on the list of side effects? Orange skin. There is a possibility that this drug will make me into an Oompa-Loompa! My friends will be happy, me not so much. Oh well - roll with the punches, yeah?
At any rate, that's what's going on. I really do have a list of syndromes and diseases as long as my arm. I'm to the point where I can't even remember them all, but at least most of them are linked and at least 2 of them have the same treatment. Once I know more from the docs office I will try to remember and post the results.
Friday, June 18, 2010
Friday, May 28, 2010
Update time!
The Savella was awful. It didn't work. I was essentially a month without drugs. I thought it was all in my head, but....well, then someone sent me this link about a group pushing to recall Savella. Nope, not all in my head - it really DOESN'T work. They somehow convinced the FDA that it did, based on 2% of people benefiting from it over a placebo. Two percent? Really? That's...no. Not acceptable. And the risks? I wish I'd done more research on it, because I never would have taken it and wasted my money.
I also had an appointment with a rheumatologist yesterday, for the first time. I liked him well enough. He's not like my regular doc whom I adore, but as long as he fixes me I'll go with it. (Yes I know - FMS can't be "fixed", but it CAN be controlled.) We talked for a bit and he tested my reflexes, noting that my left knee doesn't have any. Why? Well, back in 2002 I drove about 20 miles in stop and go traffic in my truck, which has a very stiff clutch. I've always had problems when driving the clutch - my knee would ache. This time it swelled up. I ignored it the first night, but when I woke up it was twice it's normal size. I waited a week to go to the doc, on the advice of my father, and ended up in a brace and on crutches for about 3 months...while still driving the truck, since I had no other vehicle and I was single. Went through p/t, cortisone injections....nothing worked, and I still have some fluid above my knee, but they decided it was an "irritated fat pack". Joy. Fast forward a few years, and I have fibro. The doc thinks they might be connected...when he heard all this he said "hmm...and the plot thickens". :) He also figured out very quickly that my SI joint is extremely painful to even the lightest touch - there are days when my jeans make my skin hurt back there. So...Xrays of my SI joint area, left knee, ultrasound of my hands since they always feel swollen at night but have no visible swelling, and 6 vials of blood.
He said "Fibromyalgia is a diagnosis of elimination - once they test you for everything and there is nothing else, then you have FMS". This is not entirely true. You DO have to meet certain conditions in order to have FMS, and you can have it in conjunction with half a million other things. I think I know what he meant though. Things like low thyroid can mimic FMS. So can CFS. He thinks there may be something else going on in conjunction with the FMS, hence all the testing. I go back in two weeks for all the results. In the meantime, I'm back on Lyrica, which I tried 3 years ago. It worked really well, but I gained 20# in less than a month - not good. I started it last night...and this is my new theme song until the side effects go away:
I also had an appointment with a rheumatologist yesterday, for the first time. I liked him well enough. He's not like my regular doc whom I adore, but as long as he fixes me I'll go with it. (Yes I know - FMS can't be "fixed", but it CAN be controlled.) We talked for a bit and he tested my reflexes, noting that my left knee doesn't have any. Why? Well, back in 2002 I drove about 20 miles in stop and go traffic in my truck, which has a very stiff clutch. I've always had problems when driving the clutch - my knee would ache. This time it swelled up. I ignored it the first night, but when I woke up it was twice it's normal size. I waited a week to go to the doc, on the advice of my father, and ended up in a brace and on crutches for about 3 months...while still driving the truck, since I had no other vehicle and I was single. Went through p/t, cortisone injections....nothing worked, and I still have some fluid above my knee, but they decided it was an "irritated fat pack". Joy. Fast forward a few years, and I have fibro. The doc thinks they might be connected...when he heard all this he said "hmm...and the plot thickens". :) He also figured out very quickly that my SI joint is extremely painful to even the lightest touch - there are days when my jeans make my skin hurt back there. So...Xrays of my SI joint area, left knee, ultrasound of my hands since they always feel swollen at night but have no visible swelling, and 6 vials of blood.
He said "Fibromyalgia is a diagnosis of elimination - once they test you for everything and there is nothing else, then you have FMS". This is not entirely true. You DO have to meet certain conditions in order to have FMS, and you can have it in conjunction with half a million other things. I think I know what he meant though. Things like low thyroid can mimic FMS. So can CFS. He thinks there may be something else going on in conjunction with the FMS, hence all the testing. I go back in two weeks for all the results. In the meantime, I'm back on Lyrica, which I tried 3 years ago. It worked really well, but I gained 20# in less than a month - not good. I started it last night...and this is my new theme song until the side effects go away:
Wednesday, May 12, 2010
Fibromyalgia Awareness Day
Today is Fibromyalgia Awareness Day. In recognition of all those who suffer, silently and not so much, wear purple. Talk to people. Put up posts and threads in the forums you visit. Dedicate your Facebook status for a little while or join the awareness events going on. Help spread the word that this is out there, it is real, and people do need to be educated. Take these photos, put them up somewhere.
Saturday, May 1, 2010
A new medicine
I went to the doc on Thursday because I've been having issues with my brain and pain meds not working as well as they should. We are going to try me on Savella, which is the latest drug that has been approved for fibro. According to the leaflet that comes with the med, the ONLY thing it's used for is fibro - that's a change! What I didn't know is that it is a titration pack to start - I hate those. Easing into a drug should be easier - why would I hate something that does that for me? Well, because it means that instead of the side effects being gone in a few days (typically) I'm going to have them for probably close to 2 weeks since the dosage keeps increasing. There's also no generic, because it's so new, so even with my insurance it's going to cost $45 a month just for this med alone! At least it takes place of two meds (which, together, were less than $20...)!
So far we've got nausea, dizziness, irritability. About par for the course - if something has those side effects, I'm going to get them...same with sleepiness. I also feel like I'm choking, which happens if my clothes get too close to my neck...only they aren't. I just feel like it from time to time. *deep breath* If it works, it will all be worth it.
Doc is also going to send me to a rheumatologist. He feels he is reaching the end of what he can do for me. I feel bad for him - he's done so much for me over the years and it must suck to have to admit that you're out of options for a patient. Don't get me wrong - he's still my go-to doc for everything else! I followed this doc from clinic to clinic - I'm not leaving now. I just want...well, not fixed but better than I am now.
So far we've got nausea, dizziness, irritability. About par for the course - if something has those side effects, I'm going to get them...same with sleepiness. I also feel like I'm choking, which happens if my clothes get too close to my neck...only they aren't. I just feel like it from time to time. *deep breath* If it works, it will all be worth it.
Doc is also going to send me to a rheumatologist. He feels he is reaching the end of what he can do for me. I feel bad for him - he's done so much for me over the years and it must suck to have to admit that you're out of options for a patient. Don't get me wrong - he's still my go-to doc for everything else! I followed this doc from clinic to clinic - I'm not leaving now. I just want...well, not fixed but better than I am now.
Wednesday, April 28, 2010
The reason
I was originally going to make this a daily tracking of my pain and how I feel. It didn't work out that way. I just couldn't bring myself to write every day about how much I hurt, when I hurt, what I was doing - blah. I have also been doing a lot of research and wanted a place to bring it all together. So..here it is.
I was diagnosed in 2007 with Fibromyalgia. Of the 18 trigger points, I have 14 that are always active. The FM is centered mostly in my hips and lower back and from 2007-2008 I almost couldn't walk from the pain. I was trying to go to school full time and work part time, and deal with this. I had been married for only 4 years when I got the diagnosis, but had been in pain for most of my marriage. I have been through two bouts of physical therapy, a chirpractor, a host of muscle relaxers, pain killers, anti-seizure meds, anti-depressants, and massage.
The physical therapy helped very little - only when they did ASTYM did it help at all. Chiropractic made it worse - and made the migraines kick in. Muscle relaxers work only a little bit, pain killers as well - I take them when the pain gets so bad I really really can't deal with it. I'm a Type-A, and hate being not in control...and pain killers knock me for a loop. Lyrica worked the best, but I gained 20# in 2 weeks, so that was a no-go. I'm currently on Neurontin, but am going to talk to the doc about a change. I've been on so many anti-depressants that I can no longer remember all the names. I get to talk to the doc about changing that too, soon. Massage and heat are the best, but my insurance doesn't cover massage. I'm currently unemployed - my last job quite literally drove me crazy, I had migraines every day, and my doc wanted me to quit...and once I couldn't handle the migraines and pain any more, I did.
That was two months ago, and I have to start looking for a job again. It's hard, because there are so many limitations. I can't stand for long, I can't walk much, I can't lift anything over 20# (and even that is stretching it and couldn't be done repeatedly). If it's a really chaotic environment (like the call center I worked in), it's not going to work because the migraines will come back. I'm suited (and degreed!) for office work...but the unemployment rate here is 9.8%, the highest it's been in 20 years. With all this...why am I looking for a job? Because if I don't, we'll lose our house before too much longer. It's tempting to go get a job at McD's...even though I can't handle it, even though after a few hours of work there I would be down for several days. Really, we've been trying for a loan modification on our house for almost a year and the bank is doing nothing as far as I can tell. Dragging their feet, definitely. But if I got a job at McD's and really hurt myself just to make ends meet, maybe someone would realize that we need help instead of telling us they CAN'T help us.
I am filing for disability. I can no longer wash my own hair or brush it once it's wet. My friend just cut about 5" off to try and help make it better, but I still can't keep my arms up long enough to brush it. I can do only a little bit of housework every day. If my energy level is "high" (for me), I might manage to vacuum. Normally it's dishes, and then I'm wiped out. Dishes. Really. Folding the laundry is hard, because I sit on the bed (can't stand!) and then my arms get tired of lifting the clothes.
I miss my life. I miss having energy. I miss being able to go outside and work, or take care of my house, or walk my dog. I miss being a "wife" to my husband. I miss it all, but I feel trapped in a body that has betrayed me.
I'm sorry this post is so long. I've needed a place to write all this out that didn't overflow into the other blogs I write.
I was diagnosed in 2007 with Fibromyalgia. Of the 18 trigger points, I have 14 that are always active. The FM is centered mostly in my hips and lower back and from 2007-2008 I almost couldn't walk from the pain. I was trying to go to school full time and work part time, and deal with this. I had been married for only 4 years when I got the diagnosis, but had been in pain for most of my marriage. I have been through two bouts of physical therapy, a chirpractor, a host of muscle relaxers, pain killers, anti-seizure meds, anti-depressants, and massage.
The physical therapy helped very little - only when they did ASTYM did it help at all. Chiropractic made it worse - and made the migraines kick in. Muscle relaxers work only a little bit, pain killers as well - I take them when the pain gets so bad I really really can't deal with it. I'm a Type-A, and hate being not in control...and pain killers knock me for a loop. Lyrica worked the best, but I gained 20# in 2 weeks, so that was a no-go. I'm currently on Neurontin, but am going to talk to the doc about a change. I've been on so many anti-depressants that I can no longer remember all the names. I get to talk to the doc about changing that too, soon. Massage and heat are the best, but my insurance doesn't cover massage. I'm currently unemployed - my last job quite literally drove me crazy, I had migraines every day, and my doc wanted me to quit...and once I couldn't handle the migraines and pain any more, I did.
That was two months ago, and I have to start looking for a job again. It's hard, because there are so many limitations. I can't stand for long, I can't walk much, I can't lift anything over 20# (and even that is stretching it and couldn't be done repeatedly). If it's a really chaotic environment (like the call center I worked in), it's not going to work because the migraines will come back. I'm suited (and degreed!) for office work...but the unemployment rate here is 9.8%, the highest it's been in 20 years. With all this...why am I looking for a job? Because if I don't, we'll lose our house before too much longer. It's tempting to go get a job at McD's...even though I can't handle it, even though after a few hours of work there I would be down for several days. Really, we've been trying for a loan modification on our house for almost a year and the bank is doing nothing as far as I can tell. Dragging their feet, definitely. But if I got a job at McD's and really hurt myself just to make ends meet, maybe someone would realize that we need help instead of telling us they CAN'T help us.
I am filing for disability. I can no longer wash my own hair or brush it once it's wet. My friend just cut about 5" off to try and help make it better, but I still can't keep my arms up long enough to brush it. I can do only a little bit of housework every day. If my energy level is "high" (for me), I might manage to vacuum. Normally it's dishes, and then I'm wiped out. Dishes. Really. Folding the laundry is hard, because I sit on the bed (can't stand!) and then my arms get tired of lifting the clothes.
I miss my life. I miss having energy. I miss being able to go outside and work, or take care of my house, or walk my dog. I miss being a "wife" to my husband. I miss it all, but I feel trapped in a body that has betrayed me.
I'm sorry this post is so long. I've needed a place to write all this out that didn't overflow into the other blogs I write.
April 20, 2010
(I copied this over from the first blog I attempted like this, just about a week ago)
Today is actually a fairly good day. I expected to be worse, since I took the puppy for a walk yesterday and it was longer than I had anticipated (.67 miles). I was hurting by the time I was halfway done, but I still had to walk home. At least Inara calmed down by that time so she was no longer trying to pull me.
Didn't sleep all that well last night either. I woke up at 7:45AM and didn't think I would go back to sleep, but I did. I then awoke at 8 something, again at 10 when my husbands alarm went off. He turned it off, set the alarm on his phone, and the next thing I knew he was waking me up at 10:30 to say goodbye. I got up, since I usually get up when his alarm went off, and staggered to the computer room. VERY stiff when I got up.
I've been at the computer since I got up, as I am not working and have nothing else to do except a little housework. I remembered to take my Neurontin, forgot the Wellbutrin, and it's too late to take it now if I want to sleep tonight. Haven't eaten much, since I'm not really hungry. I've been snacking on some puffed rice & corn things - very tasty! OCD is kicking in hardcore - it's very tempting to rearrange the furniture in the computer room, but I know full well I can't move the stuff. Well..I could...but then I'd be down for about 3 days. I am contenting myself with rearranging my farm on Facebook. Stupid brain. It's not supposed to do this to me when no one is home to help me control it!
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Update: It's just about midnight and I feel like shit. We had beans and franks for dinner, and then popcorn while husband played a video game. I am now really dizzy, my stomach is nauseated, I have a headache. Not sure why, but this happens fairly frequently. I'm not hungry, or thirsty. I didn't eat anything unusual. My schedule hasn't been thrown off - we never go to bed until about 1am, since we don't get up until 10. I only forgot one med today, but I have a hard time remembering that one anyways, so that's still not unusual. I don't know - I just wish we could figure it out.
Today is actually a fairly good day. I expected to be worse, since I took the puppy for a walk yesterday and it was longer than I had anticipated (.67 miles). I was hurting by the time I was halfway done, but I still had to walk home. At least Inara calmed down by that time so she was no longer trying to pull me.
Didn't sleep all that well last night either. I woke up at 7:45AM and didn't think I would go back to sleep, but I did. I then awoke at 8 something, again at 10 when my husbands alarm went off. He turned it off, set the alarm on his phone, and the next thing I knew he was waking me up at 10:30 to say goodbye. I got up, since I usually get up when his alarm went off, and staggered to the computer room. VERY stiff when I got up.
I've been at the computer since I got up, as I am not working and have nothing else to do except a little housework. I remembered to take my Neurontin, forgot the Wellbutrin, and it's too late to take it now if I want to sleep tonight. Haven't eaten much, since I'm not really hungry. I've been snacking on some puffed rice & corn things - very tasty! OCD is kicking in hardcore - it's very tempting to rearrange the furniture in the computer room, but I know full well I can't move the stuff. Well..I could...but then I'd be down for about 3 days. I am contenting myself with rearranging my farm on Facebook. Stupid brain. It's not supposed to do this to me when no one is home to help me control it!
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Update: It's just about midnight and I feel like shit. We had beans and franks for dinner, and then popcorn while husband played a video game. I am now really dizzy, my stomach is nauseated, I have a headache. Not sure why, but this happens fairly frequently. I'm not hungry, or thirsty. I didn't eat anything unusual. My schedule hasn't been thrown off - we never go to bed until about 1am, since we don't get up until 10. I only forgot one med today, but I have a hard time remembering that one anyways, so that's still not unusual. I don't know - I just wish we could figure it out.
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