Comments on: Fibromyalgia

By: Susan

Susan — Sat, 26 Jun 2010 09:09:47 +0000

Goood morning like all the rest I have fibro, DDD, IBS,CFS. for at least 30yrs. Nothing seems to work, the muscle spasms in my back get so bad everyday. I use to be very heavy, they told me to lose weight and I did 118lbs. The pain was still there. I have had knee and shoulder surgery and both of my knees still killing me. I use to burn from my rib cage down to my toes, they put me on Lyrica and I gain 40 lbs it did help some with the pain but not enough, the burning was still constant. Thank God I have a good Neuro. I had him put me on 3200mgs of Neurontin – 1 600mg in am, 2 in late afternoon and two at bedtime. I also take cymbalta, celebrax, flexiril. etc. But the burning has subsided ebough I don’t feel like crying all the time.. See if you can find one in your area that believes you and understands what you are going through.. It also helps if they personnaly knows someone with it. Good luck

By: edie

edie — Mon, 21 Jun 2010 17:09:12 +0000

I am sorry, with my last comment I forgot to mention that I also suffer with severe ruhmatoid arthritis and have had a massive heart attach, also diabetis,Ithink that covers it all ,any help out there

By: edie

edie — Mon, 21 Jun 2010 17:05:03 +0000

I have suffered with fibro for over 2 yrs now. I have been givin the highest dose of Lyrica and I still have a lot of burning tingling in most of my body, which is something I hAVE NOT READ IN ANY OF THE COMMENTS HERE , is there anyone out there that has this symptom, it is the most awful feeling there is in my feet and legs mostly, there is also a lot of numbness in my feet that only a cold ice pack will help. There has to be some kind of freedom from this dreadful disease.

By: Jennifer

Jennifer — Sat, 08 May 2010 14:12:37 +0000

I was diagnosed a year ago with Fibro, but believe I have suffered much longer with this disease. I wanted to let all the people who find exercising difficult that I have found a swimming class (hyrotherapy) that is helping me. It does not take away all the pain but it does help me feel a bit better and not quite a sore.

By: Del

Del — Tue, 27 Apr 2010 07:28:38 +0000

My pain came and went without any particular pattern — so it took awhile before I could say definitively that the various meds I was given weren’t working.
The pain was debilitating. The sleep pattern disruptions were extreme. I was on the net looking for help.

Someone wrote that their pain was relieved when they eliminated caffeine from their diet. Desperate I decided that eliminating caffeine certainly wouldn’t hurt me & so I tried. After awhile I cautiously thought it might be working. I went to a fast food place & bought a regular coke. Pain came back. Went back to a mostly caffeine free life style. Sometimes ingesting caffeine is followed by pin, sometimes not. The connection occurred often enough that I’ve decided caffeine free is my best bet.

I now rarely get that horrendous pain that goes on and on forever. I’m not sure why. Is it the mostly caffeine free diet? Is it that combined with immediately dealing with any ache or pain (e.g. eliminating anything that would cause me to hunch my shoulders — keep the room warm, avoid chairs with arms, use speakerphone when put on hold or when going to be on phone for longer than a couple of minutes).

I no longer wait for pain to get serious before resorting to aspirin/tylenol and the like. (When the pain was bad, aspirin, etc. had no effect at all. Prescription federally regulated pain killers had no effect on the pain, they just made it so I didn’t care so much about the pain.

Now I try very hard to be alert to the first inkling of discomfort, to not let the pain creep up on me until it suddenly it is all consuming or it becomes a background noise that takes over but that isn’t ‘noticed’ until it lessens or goes away.

I still have very erratic sleep patterns. My memory is still shot to hell. Can’t calculate in my head. Just found out that the restless leg I have is part of the syndrome. Morning stiffness, hey, stiffness after not moving anytime of the day, is still a problem.

In short, the only thing eliminating caffeine may have helped was the pain — but I can live with the rest. I’m not sure I could have lived much longer with the level of pain I had.

I hope that all who are suffering can find some change(s) that will give them relief, if not, by eliminating caffeine and monitoring their body position then by something else — until medical ‘science’ comes up with a cause and solution.

Trying to find a pattern, looking for a cause just about drove me nuts. So I hope that my ‘something else’ comment doesn’t induce the same feelings in another sufferer. Reading about the no caffeine fix was random. If it doesn’t work for you, I’m sorry but my backup suggestion is to try ‘random’ (non-harmful) changes in your life, diet, pls don’t drive yourself nuts looking for patterns & causes like I did.

By: Joan

Joan — Fri, 23 Apr 2010 05:19:06 +0000

Joan says that “I suffer with involuntery muscle pain and jerking and joint pain. The pain comes and goes but is worst at night when I’m trying to sleep. I then become so worn down that I can’t sleep with muscle spasma

By: Donna

Donna — Thu, 15 Apr 2010 02:19:16 +0000

I injured my back/neck/arms. Now 3 surgeries later including cervical fusion, I now have been diaganosed w/Fibromyalgia.
I have taken every C2 level pain pill available, but I experience terrible side effects and must stop them. The best Rx; was – Savella. It was GREAT, for months, then unexpectantly, my blood pressure increased very high, to the point that I had to decrease my Savella and the pain returned, quickly & painful. I am also unable to take anti-inflamatory meds due to Crohns Disease. I take meds for Depression but I don’t feel it’s helping much at this point. I feel cornered and looking for a way to get out.

By: Marge Windrow

Marge Windrow — Tue, 13 Apr 2010 07:21:54 +0000

In reference to the first person’s response about the poor writing of the medical info, it is clear to me that English is not the first language of the author. I challenge the complainer to write a decent medical paper in a language other than your own that equals the quality of this article. The author’s facts are on the money.

By: Terra

Terra — Tue, 13 Apr 2010 01:12:35 +0000

I too have been suffering with FMS and Chronic Daily Headaches for over 15 years. The constanant pain and the lack of relief from multiple medications and exercises did eventually lead to me having to quit my job. After 2 years I finally did get approved for disability but believe me it was not easy. You will need to first find doctors who believe you and who will document everything (pain meds working or not), even if you needed someone to bring you to an appointment. You also have to be your own advocate, make sure if there is something else wrong not just fibromyalgia that it is well documented on your disability application such as obesity, depression, chronic bursitis etc … Keeping a pain journal is also beneficial. Good Luck To You All!

By: Darlene

Darlene — Mon, 12 Apr 2010 15:35:54 +0000

I too have been suffering from FMS for years, over 20, and it had taken control of my body in the past year and I have been trying to get disability as I am unable to work, but it has been denied. I too have gained alot of weight and my specialist tells me I need to reduce it, but as was said in other postings, I do not get enough sleep and I do not have the energy or motivation to exercise and the pain is just too much to handle. I also suffer from depression because I feel so useless.