Fibromyalgia

[turney31]

I have fibromyalgia. I have tried many treatments the latest of which was Lyrica ( not good for me)What have you tried? What works? I have had this 20+ years. Micah

 

[Enchanted Sunrise Farms]

i'm so very sorry. Many people (and doctors) scoff at Fibromyalgia (and chronic fatigue). i had one doctor who insisted it didn't even exist. i have tried virtually everything, except for some of the newer meds, like cymbalta and lyrica. Got tired of having my body used as a testing station for the drug companies and being out of commission for days or suffering through hideous side-effects. i find that i am (and many fibro sufferers) are very sensitive to medication, reacting to super small doses that would not effect a normal person.

Someone started a thread on this a while back, so you may want to do a search. i got to chatting with someone on a thread regarding my current treatment and got pounced on by a medical student, claiming i was probably just experiencing a "placebo effect". After all these years of living in this body, i think i know what is real and what is imagined.

Anyhow, what i am taking now that gives me some type of relief is low does prednisone - 5 mgs a day. i still hurt, i'm still exhausted, but at least i'm not sprawled out on the floor bawling my eyes out from the pain, and that is a very good thing. i understand all the possible side-effects, and that it may cause my bones to be more brittle down the line. But it is worth the risk to have a life now.

Has anything worked for you?

Colleen

 

[truechick]

I am a massage therapist. I have several clients with fibromyalgia. Massage is very good at relieving the discomfort caused by fibro. Find a therapist that is knowlegable on the subject. My clients consider their massage part of their health care.

 

[gritsar]

I asked my doctor about lyrica when it first came out. He refused to put me on it then and he still refuses to now. He says it hasn't been proven safe to his satisfaction. He's a real stickler about drug safety.
I'll tell you the one and only thing that has brought me any long term relief at all. Vitamin D3. It has to be the 3 (cholecalciferol) and not the D2 because the 3 is absorbed better by your body. I've been taking it for about a year now and am doing much better as far as the daily aches and pains go. I take 3000 IU daily in the wintertime and 2000 IU the rest of the year when I can be outside more.
Vitamin D is a fat soluble vitamin, so it is possible to get too much of it, but from what I've read too much would be around 10,000 IU daily.
Of course I asked my doctor before I started taking it, as I do with all medications and supplements.
Here's the article that got me thinking about the Vitamin D connection:

http://www.motherearthnews.com/Natural-Health/2008-02-01/Vitamin-D-Sunshine-Supplements.aspx

 

[jackiedon]

I have had it for 20 plus years and this summer was also diagnosed with Rheumatoid Athiritis, diabetes, and hypothyroidism. I take Cymbalta, I can't tell much about the pain but it helps with the depression. I take Lycria but I can't take it as often as they want me too but it does with some of the pain.

Be careful with the predisone because it can through you into diabetes.

Ibporfuin presciption strength (4 tablets of over the counter) helps more than anything but then if I take too much of it I get migraines.

Airheart, I am sorry someone jumped on you. Until they have walked in someone elses shoes they don't have a clue. Even the seasoned doctors say it's a crap shoot on what works.

I have restless leg syndrome also. Rest and sleep when you have a chance.

PM me if you have any questions.

jackie

 

[English Chick]

I don't know anything about it.......but am sending you massive

.........x

 

[Jena]

I have had all the symtoms for about 10 years now. getting a diagnosis in the UK is still hit and miss. you are lucky to find a GP that understands the condition.

Last summer I saw a consultant Rheumatologist who told me I have 2 sites of sever arthritis, in my neck and in the small of my back. He did the test for Fibromyalgia, and to be honest it was summer and a very good day for me and he discounted Fibromyalgia as I only had 11 of the 12 necessary points of sensitivity.

I am now treated with an anti anxiety treatment that helps me sleep, cope with pain and with a pain treatment called Zapain. I am also very sensitive to drugs so I have made lifestyle choices to avoid being over reliant on pain relief. In 2 weeks I am due to see a pain consultant.

I get exhausted easily and have severe widespread pain, mainly in my neck and arms, which has been the focus for treatment, but also in my legs, and in my feet , particuarly difficult to cope with as I have always been a great walker. I used to walk for miles, but now find one day of walking means 2-3 days of extreme pain.

I take vitamins especially vitamin D, and B12 to help.

Last night after no real exercise due to the snow we have here keeping me indoors I slept with pillows for my neck lol... which have to be just right, another for my left arm, which was preventing severe pain in my elbows just from touching the bed and another for my leg, as the pain in my hips was so severe.

Massage is wonderful, and I hope that if ever I have an income again it will be a great way of getting some relief.

good luck to all of you.

Jena.

 

[crazyhen]

With fibromyalgia you don't sleep enough or deep enough for your body to repair itself at night. So what worked for me the best was ambien. If I sleep, yes I am sore but not as much pain or fatigue. I have knots under my feet that feel like someone took a hammer to them during the night. I find that the cheep linners that mold to your foot from wal-mart called pro something( their light blue) work wonders as the knots are cushioned and I never go without shoes anymore. I use to go barefoot ever chance I got.
Fibro. is definitely a life altering disease. Like the others said a day of pleasant work in the garden or raking etc is paid for. Usually two days later for me.
I stretch gently while I am warm under the covers each am. I too have diabetes, and multiple other problems that are hard to cope with but i think the fibro is the hardest. Jean

 

[Jena]

Quote:
Hi Crazyhen,

Thank you. You have mentioned something there that I have reported constantly. Your feet. you have described the feeling brilliantly. This was what first took me to the GP. I had travelled to London, and coming home on the train there were no seats and I had to stand all the way home.
The pain in my feet was excruciating, had trouble walking at all the next day, this has been the most difficult thing to cope with. I am used to being able to get around well and I have a similar problem with my hands if I do anything that puts pressure on them.

You are right about sleep, I have taken Dosulepin for a long time, as it helps with REM sleep, but I am still not a good sleeper. 2 hours maximum
and I alternate my Zapain with ibuprophen, to reduce the inflammation when it is really bad. I have been told to take IB at night for this purpose, so I try on good days to manage with that.

Jena.

 

[NurseELB]

Crazy Hen is right, Fibromyalgia does have a sleep component. For some reason FM sufferers experience frequent awakenings and a decreased amount of the deep sleep that leaves us refreshed and awake in the mornings.

I have been on a steady diet of Neurontin, Cymbalta, Vit D3(4000 mg/day), and a very low dose of Elavil at night to put me into that deep sleep. My doctor insists I can take up to 9 grams of Neurontin throughout a day, and is adamant about increasing the dose to get the right response. I personally feel best at about 6 grams a day, but it took awhile for my tongue to catch up (slurred speech). The extra meds I take from time to time are Ibuprofen and Zanaflex (a newer muscle relaxer related to flexeril, but stronger). For a longer flare I will add Skelaxin (daytime muscle relaxer that doesn't make me sleepy).

This cocktail has maintained me for almost a year. It took a long time to find a doctor to understand me and my symptoms. Because I am a healthcare worker I am VERY familiar with those nurses and doctors that snicker, snort, or roll their eyes when someone tells them they have FM. Because of this I am careful not to diagnose myself to a new doctor. Besides, it's what they are paid for, isn't it?

Oh, also gentle massage and water therapy help to keep my energy up.

I try to educate my co workers gently, and to the best of my ability. I'd like to think I am making a difference.

My thoughts and prayers go out to you Turneyhen! I hope you find your remedy soon.