The worst thing for me about fibromyalgia isn't the pain, that's a dull ache (when I have it) that I can deal with. No, its the fatigue and the "fibro fog". In general I'm a fairly intelligent person. I did pretty well in school and can hold my own in a conversation on a variety of topics. I'm also a trivia freak and love all kinds of random knowledge. But when the fibro fog/fatigue sets in I feel dumb as a box of rocks. It feels like my brain slows down and I can't process information, which is not fun at work, especially since I'm not sure how I'd explain it to my managers. "Sorry I seem like I'm sucking today, but I have fibromyalgia and its making me totally spaced out right now, if I could just go take a nap for about an hour I'll be ok". Yeah like that's ever going to happen. I just cannot focus on anything meaningful and if I didn't force myself, I'd probably just end up staring off into space for hours. Even as I write this I have to keep pushing myself to look back at the screen and finish the post. When this happens the best thing for me to do is take a nap, usually an hour, and my brain resets or something. However, we all know this won't fly at work, even though I feel like my brain is mush until I get some rest. I can't be helping anyone much in that state. It probably relates to not getting quality sleep, something about Alpha waves interrupting the deep Delta wave sleep, so I might have to try sleeping pills again. I've tried Ambien before and it worked well, but I don't want to get hooked on it and not be able to sleep without it. That wouldn't really be any better. Has anyone else figured out a good way to deal with this?
It seems like I'm going to have to give the low oxalate diet a try again. Or at least figure out another way to deal with oxalates. After some night time activities with the bf I went to the bathroom and OMG it burned like I haven't felt in a long time! Thank God for cold water. I could also tell things were swollen and my muscles seemed more tense and strained than they should have been. The low oxalate diet is just so boring! No chocolate, no coffee, no strawberries and tons of other fruits and veggies which are actually good for you. I'm going to have to research if you can substitute taking calcium citrate for doing a low oxalate diet, because the calcium citrate is supposed to help absorb or remove oxalates. I've never been very good with the whole diet thing if I don't have some strong underlying objection to the food (ie being a vegetarian). I really also have to work on my PT exercises because that will probably help with the fibromyalgia pain, which is also mostly in my hips, and maybe even my horrible balance and clumsiness. I have a tendency to walk into the corners of walls and furniture. I must look like a total spaz, although I prefer to think of myself as the quirky-clumsy-type girl from a romantic comedy. :-P I just always seem to remember at bad times, like right before I have to leave for work or after I've gotten into bed. Oh well if I want a normal sex life I guess that's what I have to do... Ugh I just want a normal vagina!
I tried the Flexeril the other day and it did work. Man did it ever work! It was almost like taking an Ambien, except it doesn't kick in as fast or make you loopy if you stay up after taking it. The only problem is it works too well. I slept like a rock last night and the night before, which was great, but I was exhausted when I woke up on Tuesday for work. Then today I work later in the day and therefore didn't have to get up early. I slept until 10 and that was only because my boyfriend turned on the TV, I probably easily could have slept later. I've been taking 10 mg, but I might try to split the pill and take just 5 mg, because 10 seems to just be too much! I'll try Thursday night when I don't have to get up for work early the next day. Hopefully that will help me sleep but not totally knock me out for so long. Well at least it does something, which is more than I can say for a lot of things we all may try. I mainly need help with sleep and fatigue. I do have pain but right now its more soreness and discomfort that I can deal with (knock on wood). The fatigue/fibro fog just shuts me down and if its bad enough I have to take a nap or I won't get anything done. It sucks at work since I can't take a nap then and I have to try to keep myself conscious with lots of coffee, which doesn't always work. Has anyone else tried anything that has helped with the fatigue? I'm doing the Flexeril and trying exercise a few days a week, which does help a bit, but sometimes it still breaks through.
Ok, so I know I just posted, but I had to rant about something else. About 2 hours ago I took some generic Tylenol Arthritis hoping it would help my hip pain, which has been making me not want to move for half the day. Since then the pain has gotten worse despite the Tylenol and trying to keep my legs extended and not cramped up, which is what usually makes things worse. I'm also feeling slightly loopy/light headed. What?! I know that traditional pain relievers don't always work for fibro, but they usually do at least a little for me. Why would it get worse? Argh, I really hope the Flexeril works tonight.
I went to the rheumatologist today and I don't have lupus! Yay! I don't know why my ANA came back positive the first time, but it was negative this time, so that's good. Bad news I still have fibromyalgia and I've been pretty uncomfortable today after traveling and not sleeping much this weekend. My hips are really sore from being squished while on the plane and prevented me from running today. My knees and ankles are sore too, but not as bad as my hips. I had my Flexeril prescription filled so I'm planning to try that tonight to hopefully alleviate some of the pain and help me sleep. I think I'm also going to have to start sleeping on my back to keep the pressure off of my knees and hips, which sucks because I really prefer sleeping on my side. I'm also going to try to stop crossing my legs so much when I sit for the same reason. In addition I'm going to try to start up the PT exercises I got when I was doing therapy for the VVS. I haven't done them in a while so those might help with my VVS pain and since a lot of them have to do with pelvic floor and hip muscles, maybe my fibromyalgia pain too. Argh, I hate having such vague and poorly understood conditions. I have no idea why I have VVS or fibromyalgia and they just seemed to come out of nowhere. For a while I thought I might have fibromyalgia because I had so many of the symptoms, except for pain. Then at the start of the year the pain kicked in and hasn't stopped. Why would my body do this to itself? It just makes no sense (well I guess thats the same for all autoimmune diseases, why would your body turn on itself?) I feel like every treatment is an experiment. I just want something that works for the VVS since I've been dealing with it for so long and helping the fibro would be nice too. Hopefully the Flexeril will work at least a little. That would be nice.
This week has been super stressful despite not having to work that much. It's all been personal stress, the most fun kind. First I'm trying to plan a long distance bridal shower which is really hard to do! Trying to get my scattered friends together in one place at a specific time has been difficult, but it is finally all set. But its a different day then I thought it would be when I booked my flight so I had to deal with trying to change the flight, but its ridiculously expensive, like twice the original ticket so I've checked out other earlier flights and I'm going to show up super early for one that looks fairly empty and try to get on. Wish me luck!
I wish that was the worst of my problems, but my boyfriend, "Michael". I'm leaving for school soon and we'll have to do long-distance to stay together. We've both done it before and its not fun. So we've been talking a lot about what to do and its mostly been upsetting. I'm also thinking about where its all going due to the bridal shower and since he can't give me a straight answer its making me obsess over it, as I tend to do.
So what does this have to do with my fibro and vulvodynia? Well stress just makes the pain worse! Mainly the fibro right now, which is making my hips and knees ache. I'm also having more trouble than usual trying to sleep, which gives me more stress, which gives me more pain! Its a crazy vicious cycle. I have another rheumatologist appointment next week where I'll find out if I also have lupus or not (hopefully not) and maybe get some more ideas on what to do. I thought summer was supposed to be a relaxing time!
Just before I was officially diagnosed with fibromyalgia I decided to take up running. Despite it not necessarily being suggested as the ideal exercise for fibromyalgia, I've kept with it for about a month now. Three weeks longer than I've ever stuck with running in the past. Well at this point its more of walking/jogging, but you get the point. I've never been what you would call "coordinated" or "athletic". Most of the time I'm lucky if I can walk straight and not run into a wall. Lets just say I'd be bad at that sobriety test when I am sober. As a kid gym was my least favorite class, especially when it was time for the President's Challenge (do they even do that anymore?). Remember it? You had to do a bunch of sit-ups, try to do pull-ups, see how far you could reach past your toes, and...run a mile. I could never do it, I'd have to walk a good portion of it. It was so embarrassing, especially when all the other girls in my class were stick thin soccer players (I was of course chubby too). Because of that I've always tried to get myself into running despite hating it. Finally I decided I'd need a reason to run, so I signed up for a 5k in July. I'm slowly getting better at it and I hope I'll be ready when the time comes for the race! Its going to be a bit harder for me since I'm one of those weird people who hates running outside and loves the treadmill(tv total, control of your speed, and being able to just stop whenever you want, who wouldn't love it?), so I have to get myself outside more to train. So far it hasn't been too bad on the fibro. Some days I do notice more joint pain, especially in my hips and knees, but it has definitely given me more energy overall. We'll see if it helps in the long run, but I've actually been enjoying it, which is something I never thought I'd say. Has anyone else tried exercise to control their fibromyalgia? How has it worked for you?