Fibromyalgia

[eclectic]

I was just curious if anyone else has fibromyalgia?

I was diagnosed and started treatment for it about 6 years ago. (I call it my little miracle pill)

Mostly I would like to know how you treat it, what your recovery times are like, how you are able to train and pace yourself.

And I wanted to "come out of the closet" Not that it is anything shameful just I always feel I should be able to do what everyone else does and not use FMS as an excuse. Since I have started cycling more and weight training to get my muscles stronger I have way fewer "FMS days" and less pain.
But I am frustrated that I can't get as strong as others.

Also does anyone know if it can go into remission? My Dr. isn't too helpful, I just go once a year, get a script for my miracle pills and leave.

[KnottedYet]

I don't have fibro, but I worked in a clinic where we had a specialist in PT for fibro. I helped with a lot of fibro patients, but I'm no expert.

Fibro can go into "remission" and it can get worse. Got a mind of it's own! Like many autoimmune diseases it seems to be aggravated by stress and helped by exercise.

Did you do PT for a home exercise program specifically for the fibro? The therapist can look at what parts of your body and aspects of your strength are most effected and give you exercises and stretches for those areas. The home program is in addition to your usual activity. The therapist can also help you figure out how to pace yourself and how to gauge recovery times.

[mlove]

I was diagnosed with fibro in 1993 but my doctor was sure I had already had it for a long time. If you have a miracle pill, I envy you. I have tried lots of prescriptions and still have pain and sleep issues. However, once I actually started exercising, I felt better. I still hurt but I do a lot of cardio, ride my bike, and just try to keep active. If I hurt, I take more pain killers.

Fibro doesn't always get worse. I am about the same as I have always been. I haven't gotten better either. Everyone progresses differently. I just see my rheumatologist twice a year and my internist twice a year.

There are some great books out on fibro, especially the ones by Dr. Mark Pellegrino. If you haven't been reading up on the subject, that's a great place to start.

Just keep riding.

[han-grrl]

I have trained clients with FM

It means being patient, moving slowly and using rate of perceived exertion rather than heart rate zones. many of the meds my clients were on affected HR so using zones was essentially useless.

it also means taking it one day at a time. some days are good and some days they might call an hour before to cancel.

i had one woman actually break down in tears with me because she was so deconditioned. we did basic leg lifts and just simple movements to get things going and she was having a hard time. i told her it was ok, and to take it one day at a time, and not to over do it. this was at a gym, and i kind of wish she would have bought some PT just for the extra coaching and comfort.

anyway that is my experience with FM.

[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.