What do you know about Chronic Fatigue Syndrome and Fibromyalgia?

@kbkbooks (7028)
Canada
April 29, 2008 10:45pm CST
If you suffer from Chronic Fatigue Syndrome and/or Fibromyalgia, please share your experiences with me. I was just diagnosed and I am getting all kinds of conflicting info. I have suffered with exhaustion for a few years now and pain, and I always attributed it to my arthrosis in my back and side effects from my meds. Recently I saw a neurosurgeon and had more tests and the new diagnosis is this. Anyway, it explains why my limbs feel like lead, my joints swell, and I can't sleep enough ever. I have one doctor who told me not to lie down and rest so much because I would supposedly lay there and think and make myself depressed. I don't stay awake long enough to dwell on anything, most of the time, except the nights when the pain is so bad I can't sleep. I have had two doctors tell me to sleep whenever my body demands it, for as long as I feel I must. What is your experience with this? I tend to follow the advice of the doctors who told me to rest as needed. My body doesn't really give me much choice.
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3 responses
• United States
25 Jul 08
i have fibro and im positive (but i dont think its been diagnoised) that i have chronic fatigue and i know they tell me to exercise for pain and tiredness but it doesnt help either so i end up in bed a lot and i do sleep longer than other people but i always have lol.. i think sometimes you got to just do what you feel like you need to.. i think some times if its possible people just need to sleep when they feel then should and stay awake when they feel like that.. i have had too many things going on to do that but im thinking about trying it out again within reason lol.. i was also put on a medicine for fatigue and it made it worse.. if you want the name of it i will look it up but im sure they prob have already tried it on you.. i have the knack of having no meds work or do the reverse and i have heard it help a lot of people but im just lucky like that lol
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@kbkbooks (7028)
• Canada
25 Jul 08
Your experience sounds similar to mine. This past month my mom visited me for a few days. After she went back home she calls me up to tell me I shouldn't be "letting myself go" as I have gained weight from my antidepressants and pain meds. Plus the fact she thinks that if I exercise I will get more energy. Maybe, but OUCH.
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• United States
26 Jul 08
well everyone kept forcing physical therapy and exercise down my throat and thought i just didnt like them.. when before my fibro got bad i was ALWAYS exercising so obviously i dont have a problem with it but if i work out 1 day it takes me a week to recover!! i forced myself for a couple of months a couple of years ago and i just got worse as far as mobility and i just said screw it and stopped.. i always seem to be the freak person that things tend to not work for lol..
• United States
4 Jul 08
I didn't even know there was such a "syndrom". I just thought chronic fatigue went along with fibro. I am still in the diagnosing stage. I finally found a doc who doesn't think I'm a whinning crazy person. Right now I am just working to get a hold of my limitations. Each day they are different, and they can even change throughout the day. I'm learning to pace myself and realize when I've done enough...and not push through to get the job finished, but take a break and get back to it IF I can. I rest as much as possible. It helps to elevate my legs. I also stretch all throughout the day. I pop motrin as if it was a breath mint. It seems to keep the inflamation down enough to allow me to move...MOST days. Just hang in there I guess, and keep coming back here, there are several very wise sufferers willing to share!
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@kbkbooks (7028)
• Canada
5 Jul 08
I am having the same problem, just learning what my limitations are. I have to accept the fact that I NEED to rest or sleep more than I used to. I hate it but sometimes I have no choice but to lie down and go to sleep really fast.
@patgalca (16670)
• Orangeville, Ontario
1 May 08
Both are correct. You must exercise to keep your muscles from seizing up. This will just cause more pain. You also need to keep your heart rate up and exercise also lifts your spirits as it releases serotonin. However starting slowly is key. You don't want to kill yourself. Start with a walk to the end of your driveway if you must. I started with a walk around the block and now (5 years later) can walk 3 miles in an hour. You also must learn your limitations and pace yourself. Sure, exercise causes pain however you are going to feel pain anyway, right? Better to have the pain along with the exercise. If you have an event planned that you want to attend, rest up for it a couple of days before and be prepared to have to rest for a couple of days afterwards. Taking some supplements can help but remember there is no cure so don't dole out money to quacks who say they have a cure. You can treat and manage your illness. I spent five years lying around feeling sorry for myself before I got up and got to it. The most effective supplement is magnesium/malic acid. People with fibromyalgia are known to be severely lacking in magnesium which aids in over 300 bodily functions. Everyone who has tried this supplement has had success. I went a week without it when all three stores in my town ran out of it. My pain increased over that period of time, and decreased when I finally got more (called Mag-Citrate here). Remember, every individual is different so what helps one person may not help another. But the magnesium has helped everyone. I tried 8 different anti-depressants until I found one that helped me with little or no side effects. I have heard of others on the same medication have problems with it. Likewise, I have tried anti-depressants that didn't work for me that work for others. It will be a matter of trial and error to find a pain management system that works for you. Water aerobics is another good, easy form of exercise. I run a support group in my town so I have encountered many different types of therapists, doctors, etc. I have tried some therapies - some I liked, some I didn't. I love my deep tissue massages and would feel great if I could have them every two weeks, but my insurance company won't pay that much. Other people can't stand to be touched by massage therapists. My doctor said she had one patient who only found help with acupuncture. I tried acupuncture for my tennis elbow and it did nothing for me. Like I said, you have to find what works for you. Educate yourself and your loved ones, keep a positive attitude (hard to do, I know), and try not to let the beast control you. Good luck!
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@kbkbooks (7028)
• Canada
3 May 08
Thank you very very much for your informative answer. Very educational, and I am sure I now know more about it than I did before I read it. Will be sure to talk with my doctor about it. My regular family doctor is apparently considered somewhat of a specialist in Chronic Fatigue, so it will give us something to work on together.