The pain in MS versus Fibromyalgia & M.E

[MrsAristotle]

OK I get really confused about the pain found in MS, some neurologist still say there is no PAIN in MS, then on the news in the UK there is this lady who went to court about assisted suicide as she wants to be able to go to Switzerland for assisted suicide and not have her husband arrested, WHEN THE PAIN of her PPMS gets too much for her to bear.

Then there is the pain in Fibromyaligia and M.E. When I talk to people who have FM & M.E the pain is virtually the same or scaringly similar as MS.

My daughter for example was diagnosed wiht M.E, and I have been more or less told I have myelitis/ms, and when we talk our pains are very similar although I tend to get more peripheral neuropathy.

We have a friend who has been diagnosed with FM and she gets pains similar as both my daughter and myself and other people I know who have been diagnosed with MS.

What is the pain of MS?

I thought it was the sensory problems, the fizzing, tingling burning, sharp pains, spasms and cramp you get which I get every day BUT it would never be too bad to contemplate finishing my life.

What pains do others get?

Why is it that all these diseases are so similar, it's no wonder the neurologists have trouble diagnosing us.

I am just confused about all this.

[Lowen]

I do believe that is not uncommon, for a person with an autoimmune disease such as MS, to also have fibromyalgia.

In fact, you're right--there is the whole cavalcade of diseases and disorders from different groups and classes that have very similar symptoms. I think they call them "mimics".

I have some great books on fibromyalgia that you may be interested in taking a look at. Both books describe and explain the pain and known pathology of fibromyalgia and also explain what is known about it's correlation with other diseases/conditions including but not limited to: MS, Chiari 1 malformation, Lupus, Rheumatoid Arthritis etc.

1. All About Fibromyalgia
By: Daniel J. Wallace, M.D.
Janice Brock Wallace, M.P.A.

I have met and seen Dr. Wallace personally, and he is an expert Rheumatologist. He is a clinical Professor of Medicine at Cedars-Sinai Hospital and the UCLA School of Medicine in Los Angeles, Ca (where I live!) Around here, he is known as "THE" fibromyalgia guy and he is very nice. His book is great-and I highly recommend it.

2. Fibromyalgia & Chronic Myofascial Pain: A Survival Manual
Second Edition
By: Devin Starlanyl
Mary Ellen Copeland
With a Foreword by Christopher R. Brown- past President of the American Academy of Pain Management

These are both very good books that you might want to check out. Look for them online at Amazon.com. They might be able to help clear some of your confusion, especially regarding fibromyalgia--and they are also good books to have just a references.

Hope I helped out and good luck!
Feel better!

[uk2]

Hi,

I was dx this year i Jan 2008 with fibro i suffered since Jan the year b4 after a car crash in Nov 2006 and not worked since May 2007 when the all over body spasms and nerve pain nearly broke me, since then i go up and down like a yo yo different meds and nothing controls the pain, i am on fentanal patches ( like morphine) lyrica,clonazapam and recently requip.

i've had all the test be it low key NHS as i'm in the UK but i've had MRI brain,thorasic, the pelvis. a LP and apart from finding bulging disks and degenerative disk disease they found no lession, so finaly an expert in london after someone paying for me to go private said i had fibro!! but i said how can it be so bad for me and others and some people work with it, he explained it as a hyper sensitivity of the CNS so it varies from person to person like MS does and its pain, so little is known about fibro, i have a friend who has had MS 10 years and she is amazingly mobile then i know people in a wheelchair by their thirties!! i cant get out the house unless i go in a wheelchair but spend alot of my time confined to bed in bouts of agonising nerve and muscle spasms, i have 3 children to look after, i want a life back and cant understand why they cant control this type of pain.

My GP is not convinced i have fibro but does not know what i have, quix talked about central pain syndrome which would make sense but they seem to be simular to fibro and treated in the same way.

Tiffany

You are so right living in constant pain daily is tiring and so depressing if it were not for my kids and my faith i think i would of given up long ago. But i live in hope they will find a medicine to help one day.

my pain started like yours after a nasty accident i suffered whiplash and the pain started thier but set off all over my body and they though MS but all the tests came back normal so i guess it must be fibro who knows but it sure not fun.

love sam

[mary_kay]

I too am undx'd and have had just about every test there is. Waiting now for the results of the LP and thoracic MRI. Your description of your pain is very good and sounds just like mine.  My pain is with me all the time.  It is worse when I get up from being still. For example, getting out of bed in the AM or getting up from a chair.  It is always there to some degree.  It feels like I worked out with weights and am very, very sore.  It is located on the back of me, not on the front except my hands hurt too. My neuro won't consider Fibromyalgia until absolutely everything else has been ruled out. Ahhhh well,  I guess I'll have to wait a bit longer for the mystery to be solved.

[tiffany515]

I am currently undx'd, but am being tested for MS and fibromyalgia. (go figure)
My condition started with Pain.  I felt like I had a pinched nerve in my upper back two years ago, which started to calm down, and then felt more like a pulled muscle.  Presently, I still suffer from that "injury".  The pain then spread to my neck, and pretty much stays with me all of the time.  It's like my muscles NEVER relax.  I then started to have numbness in my left hand and shooting pains in my left arm.....so the most reasonable explanation was a herniated disc in my neck pinching a nerve to my arm, right?.....wrong....MRI of neck showed no bulging discs and no stenosis.  I have since started to have pain in my back, in my knees, in my hands, in my feet, in my hips, and my wrist tendons are really inflamed and swollen.  Numbness now in both hands and sometimes in my toes, and more recently numbness in my face.  I also have many other neruo symptoms, which is what's prompted the testing, but I just wanted to share my input on the Pain.  Living in pain day in and out is terrible, no matter what disease you may or may not have.  It's certainly no way to live, and I hope we all get the help we so desperately need.  Much love to all, Tiffany

[Wobbly]

I have had left sided leg pain for over a year... and it's slowly gotten worse... for the past few months my right sided leg is also starting to have pains..

the pain is usually in the afternoon to evening...sometimes when I get up but not that often...usually about 2 hours after I get up I start having leg pains...my left leg is numb alot of times as well and heavy..

the pain is in my thigh area, but I get cramps in my calf area as well....

the Neuro I see said patients do have pain with MS...I'm not yet Dx but have pains?  

take care
wobbly
undx

[Momzilla]

I am confused about this, too, as I was diagnosed years ago with Fibromyalgia, and now have my doctor scratching his head wondering what neuro condition I have.

My legs get a good work out at my present job and they really do hurt tremendously if I work more than a couple of days in a row.  I work part time now, and walk a lot in for my job, sometimes transporting patients by wheelchair to all different areas of a huge hospital.

The pain I used to have with the Fibro was at times very painful and very symmetric.  Once I broke the cycle of poor sleep, it tended to get better.  And it did seem to be all over my body, if I recall.

Now my limbs get stabbing pains, mostly my legs, and it's not symmetric like before.  It flashes from one side to the other seemingly randomly.  I have never been stabbed with a knife, thank God, but it's how I would describe the pains, although I'm sure it's not at all like being stabbed with a knife to someone who's actually BEEN stabbed with a knife.

And I also get these 'lumpy cramps' in my upper thigh.  They come on suddenly and really really hurt.  They take my breath away.  The Fibro never acted like that.  It seemed more diffuse, but could be quite severe at times.  The pain of Fibro can be incredibly debilitating for some.

I am interested to know what some others have to say, too.  I'm crampy and crabby most of the time here and would love some answers!

Peace,

Zilla*