Fibromyalgia

[eclectic]

Thanks for the great responses Once again the TE ladies pull through. I should have said something earlier.

As of now I am just going blindly on my way and trying to figure things out exercisewise.

Like you mlove I figure I had it for about 12 years before being diagnosed - After many different types of dr. visits it was finally a psychiatrist that diagnosed it, he said mentally I was fine (some of my friends may beg to differ ) and sent me over to the rheumatologist.

I have tried to read what I can find about it but I have never read anything by Pellegrino - thanks for sending it along. My daughter was also diagnosed at 17 years old (she is 19 now)

My pain can be very much weather related and fatique related (mainly not enough sleep vs working out too much) I started going to bed earlier and have felt much better. 8-9 hours of sleep vs 7. I used to swim at 6am and was exhausted all the time - now that I have switched to evenings I feel much better - I have always said "life begins after 4PM"

One of the best things I have done is quit all caffiene products, I will drink 1/2 and 1/2 coffee once in awhile but not often enought to get addicted again.

Very interesting han grrl re heart rate - I have never heard that - are rates usually higher or lower? Mine is usually above target even though I feel fine. I have been blaming my asthma meds for that

Knotted Yet - I have never heard of using a PT for FMS. WOW! makes sense, how is one able to do that? Do I need to go through a physician? I suppose so. I will check w/ my ob-gyn practicioner vs my rheumatologist - as I said he just gives me the once over, fills the script, says i am doing great, keep it up and sends me on my way. The former one we had was much better.

Mlove I am glad to hear that you too are not opposed to pain killers. I have friends w/ fibro who refuse to take any. They are also overweight and out of shape because it hurts too much to do anything. I figure a few pain killers a day aren't going to hurt me as much as not being physically active. All my Dr's said as long as I stay w/in daily limits I will be fine. most days are 2tabs, some days are 4 and in extreme circumstances 6.
I am taking 5 milligrams of cyclobenzaprine (flexerol) before bedtime - that is my miracle pill. Apparently it works for about 45% of people - I lucked out. My daughter is on Ametrypteline (different dr's) but she doesn't like it I need to see that she switches meds.

[mlove]

I take cyclobenzaprine too. It does help with sleep, especially if I take it a couple of hours before I go to bed. But I am lucky to get six good hours of sleep. I wake up a lot and unlike you I am an early riser. Once I started going to the gym early in the morning, I started exercising more regularly. After work I found I was too tired to do anything. That said, now I can go on evening rides in the summer without problems although I still tend to go to bed by 9 pm.

My doctor prescribed physical therapy when I was diagnosed and it helps. But after a while my HMO said I couldn't have it any more for the fibro because it is a chronic condition. If I ever need it again, my rheumatologist will have to find another reason. I do find that massage helps, but you have to find the right person. I have had a lot of bad experiences where I could hardly get off the table afterwards because the pain was so bad. But a good massage therapist can make a huge difference. If you decide to try that, check to make sure that the person actually works with people with fibro.

[han-grrl]

actually with my one client the meds wouldn't let her work hard if that makes sense. as soon as HR started to rise about 120 or so, she started to feel dizzy.

[mlove]

I would guess it depends on the person, the level of fitness, and the type of meds. When I started exercising, doing 3 mph on the treadmill was challenging and I couldn't work out for more than 10-15 minutes. Now I can actually run at 5.5 mph. Having my heart rate in the 150s for short periods is challenging but I don't get dizzy, sick or anything. I am 55 but I think that building up over time, and working with a trainer, really can help. I also managed through all this to lose about 40 pounds.

I do spinning classes, trainer rides, ride with the club, and do 5K walks (races) as well as working out on the treadmill. I also like yoga but I have to be careful with strength training. That is where I can develop real problems.

[eclectic]

My meds give me about 5 hours of good sleep but now that I am going to bed earlier I can sleep better the remainder of the night (wierd) I WISH I was a morning person - my body is in AGONY if I do anything w/ impact early in the day - even plain walking is too much, I can bike ride, however, and on long ride days in the summer have been know to leave at 6:45am

Just by starting the meds I lost 10 lbs. It seems like my "appe-stat" was off too, I was hungry all the time. Now it feels normal again. When I eat i can feel full.

I hear you about the massage. A good friend of mine is a massage therapist and she is pretty gentle. But the first time I had one I thought I was going to die the next day. At the time it felt so good. The next one was much better.

I am working up on the running - I run on the indoor track because I find my legs hurt more on the treadmill. It will be interesting this spring when I hit the trail outside and the surface is harder. yesterday I did 1/2 hour on the elliptical before running 1/2 hour. I timed my self and was doing an 11 minute mile for 2 miles (whoo hoo - for me that is REALLY good) I have absolutely no pain today so that is another really good thing.

I really need to do weight training. I use the machines because then I don't have to worry about form as much. I worked up to it slowly and do a medium weight and only 1 set of 10-15, I follow a prescribed program and have good recovery days. (although now I am trying an experiment of "mixing it up" 1 week of med. weights 1 set 10-15 reps, one week of light weights 3 sets of 10, back to med for a week then 1 week of heavy, 5-8 reps, 1 or 2 sets - I am on week 2 so shall see how it goes)

I stretch really well after each workout and that has really helped the residual pain. I would like to fit yoga back into the mix - guess I will just have to quit work

[EBD]

I hope you don't mind my chiming in - I don't have fibro but my cousin (with whom I am close) does. She is also a triathlete, so she has somehow found the key to being very athletic. She has had good luck with nutritional therapy - she saw a nutritionist in NYC who was very knowledgeable about fibro (rare, from what I understand). The diet she was given was very strict, but she said it almost completely relieved her symptoms. I don't know all the details but I know it involved basically cutting out dairy and wheat. There were also other dietary dictates and supplements, so don't go on my description - but if you can find a nutritionist who really knows fibro, it might be a big help. She no longer follows it strictly at all times (a girl's gotta have pizza now and then), but I think when she starts to get symptomatic she goes back on the diet (plus daily exercise) and feels better again.

[mlove]

Another thing to think about is sensitivity to cold with fibro. If, like me, you live in a cold place, you may need to experiment to keep your fingers and toes warm if you ride in the winter. So far I have figured out gloves but my feet are still a problem, even in the house with warm socks, etc. Outside I am just outside of frostbite, even at 45 F.