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Welcome. This community has been created for people that are suffering
and surviving fibromyalgia. All are welcome. That means patients,
spouse/significant others, medical professionals, and people wanting to learn
more. This is for sharing our daily struggles and pain and good days.
Live Journal
Fibromyalgia Community
Scary New Symptom
I've had what I now realize is probably a new symptom the last week or two. It started where I'd feel a little high, totally out of the blue. The last couple days it's been: dizzy, weak, trouble focusing my eyes, fast heartbeat, no energy. Today walking two blocks was too much. I felt fine at first but after the dizziness started my energy was gone. I'm not flaring but my hands, arms and neck are tighter the last 2 days.
I tried Savella for a few weeks and stopped it last week. It didn't help and I started having side effects where I was really weak and fatigued. Could this crap still be in my system, causing these symptoms? It's hard enough to get anything done, much less enjoy life, as is but with this it's hopeless. I'm not even asking for all better, just well enough to see friends and be happy.
ETA: I made the dress I'm wearing in the icon photo. Just finished it Saturday.
I had this great, great day yesterday. I had my MRI, visited a friend in the hospital there with a bad infection, went home and washed a bunch of dishes and actually did a lot of cleaning in my room so it looks like somebody's room now, instead of just this chaotic mess of clothing and books and things lying around to get tripped on. Then Mark wanted to go pay the phone bill, so we went downtown. He had forgotten his driver's license, so we had to go back, and then he found the license and we went out to eat at a French restaurant (remember, we were the food pantry kids for quite awhile). I would say moderate exercise. I was happy and cheerful, and I thought, well, maybe I can control this and have a normal life if I just stay active...
Now. Pain. Sore throat. And somehow, I lost my smokes, which means walking two blocks uphill to get more after I smoke another couple of three-quarter smoked cigarettes. Uggh! Is the only way to find happiness with this condition accidental. Like one day, you hit upon all the right ingredients and the next day, you'd better be able to pay out in pain and misery? I'm so sick of sitting or lying around hoping not to strain anything. That just makes me depressed. I'd say it's unfair, but then life's unfair, I guess. I just hate that I could feel so great yesterday and so awful today.
Savella, Cymbalta and gastrointestinal woes.
Just to give some background info, I stepped off Cymbalta and haven't had any in a week and a half or so I think. Maybe a little longer. I'm now stepping up onto Savella and am at the end of my first week. I've been on Savella before, and don't recall having any weird side effects.
And the rest is cut because it's TMI. Poo TMI.
I don't know if you'd call it diarrhea, but I have been having poo issues that I guess might fit into this category. Without getting too graphic, I'm going pretty frequently, though there's not much there and it's very liquidy. Sometimes I'm feeling fine before hand, I'll need to use the bathroom, during that time my stomach will gurglw (pretty loudly) and afterwards I just feel... blegh. Not an upset stomach, but just all over icky. I know that's not very descriptive, but I can't think of any other way to say it.
I know that I did not have this when I first took Savella. Has anyone got this when starting out? Could it be because I'm still going through Cymbalta withdrawal? Or maybe a third option? This has been going on for the better part of a week and it's really leaving me feeling pretty crappy. (Ugh. No pun intended, seriously.)
I have had some nausea, but it's not nearly as frequent, if it helps to know that.
Mods, assuming you're kicking around here somewhere, can we have a Savella tag?
proving disability
When I am fighting CFS, like today, and on my last week of unemployment payments (need to file extension) I really consider filing disability. My issue with unemployment/employment is that I cant work the jobs I use to and no low level job will hire me because I am "OVER-QUALIFIED" (I hate that b.s.!!!). So I really need to look into disability. I have no medical insurance, so havent been to dr recently to talk over disability. So I turn to my FMS community for help. My question for ya'll is:
What do you need to prove disability?
What ducks do I need to get in a row before filing?
I have some of the paperwork from last year when I went out of work on temp. disability. Do I need to have Dr. files, charts, affidavits?
Thanks for any info!!
MaRissa
Update on new symptom
I think I have a head cold, including my ears, which is why I'm dizzy etc. Whenever my ears are involved it screws with my head, balance, all that. Thanks for the advice and well wishes :) I'm doing nasal irrigation to fend off sinus infection.
savella - LOVE IT!
ive been on savella about 3-4 weeks now and even with this crazy winter weather and having flare ups my base pain level is lowered some and i have got a boost to where i want to accomplish the things i have put off for 6 months that i wasnt able to do (yeah they are simple things around the house but considering i have been bed ridden off and on that can be a big accomplishment) i sleep better more (and i have bad insomnia so even 1 or 2 more nights a week of better sleep is huge for me) and taken away my daily headaches.. but i have like 2 questions about it for the people that have been on it longer..
1. if you have ADD did it make your meds not work as well? 2. did you feel this weird tingling feeling in your body.. not enough to bug you but almost as if a calming soothing feeling.. just wondering since i havent had any side affects (for once!)
i wonder why they arent advertising it! i see lyrica and cymbalta everywhere and those drove me nuts and here is this great one and not a peep media wise that i have seen! but i did read the side affects for men and they are insanely scary so maybe that is why but if fibro affects mostly females then i would think they would still advertise it! is there some bad side about this drug i dont know about so thats why they arent shouting it from the rooftops?
Ruminations on Hand Pain
My forearms, wrists and hands are hurting a lot again. Last night even my pinkie started hurting :( I've been able to sew, even some handsewing, but my go-to knitting is really tough. Knitting now equals pain. I'm trying to finish a quick cardi, only one sleeve to go, and sharp pain in my hand forced me to stop again tonight.
I spend so much time at home watching movies and knitting, but without knitting I start going crazy. I learned to knit because I can't just sit and do nothing even when I hurt too much to do anything besides sit. Knitting keeps the fidgety part of me busy. Being productive in a situation like mine is very important and knitting gave me that as well.
It's so hard that I'm not able to do 90% of activities but to now lose some of the few things I could do is just horrible. I do my best not to think about it but it still stabs me full of regrets. It feels like I'm wasting my self, every day, not able to think or work or have fun. And sometimes it seems that the waste is my fault somehow, that having accepted this reality makes me complicit in it and therefore guilty. I don't know. I just know I was capable of amazing things.
Virtual Exercise Buddy?
I just had an interesting idea: an online exercise buddy, from this group, rather than going it alone. We could encourage and keep each other accountable, perhaps via email. It would help me just to have a reminder!
Let me know if you're interested. I'm aiming for walking at least 10min every day I'm able, to start a routine. I will respect your goals and limitations. I think having someone to say "way to go" or "don't forget" etc would be nice.
Thoughts on fibro, Alli and nutrition
I'm becoming more convinced that there is a relationship between nutrition and fibro. Not so much that a specific diet is called for. More like us fibromites need more than the normal share of certain nutrients. There are some people who feel that certain foods cause fibro pain. For me this is not the case. I've tried an elimination diet, eliminating dairy, nightshades, caffeine, etc. None of that had any effect.
When I was on Alli for weight loss, however, my pain went through the roof, more than doubling, tripling. I take daily pain meds, but the level of breakthrough pain was starting to make me feel like I wasn't taking them at all. I was practically back to square one - managing my pain on an hourly basis. If things kept up, I would be back to managing it on a minute to minute basis. No way did I want to go there again.
At first I thought it was the weight loss itself putting strain on my body. Well, I'm off the Alli and still losing weight, but my pain is better. It was definitely not the weight loss. Alli does interfere with the absorbtion of nutrients, so it's recommended that those on it take a multivitamin before bed. I was doing that any way, so I just kept up with it. Whatever it was that Alli was taking away from me, a single multi obviously wasn't making up for it.
I've been doing some googling and there seems to be a link here. Now, I'm not saying that a lack of certain nutrients causes fibro, because that's ridiculous and if that were true then supplements could cure it. What I'm saying is that the lack of certain nutrients seems to be prevalent in fibro patients, which in my opinion also contributes to symptoms.
Studies have shown that there is a relationship between fibro and the oxidant/antioxidant balance. Others have shown a deficiency in essential fatty acids, which effect cell functioning. Fibro patients also seem to crave more carbs due to decreased serotonin levels, yet can't process them efficiently because of electrolyte disturbances. Lack of vitamin D has been connected to certain kinds of pain as well.
For the past week or so, I am no longer on Alli. I've been taking Vitamin D, Evening Primrose Oil with 9% GLA, extra multivitamins, and packets of Emergen-C for antioxidants and electrolytes. I have been feeling better, and I'm almost back to baseline. This seems to be working for me.
I'm curious what people's experiences/opinions are regarding supplements.
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