Multiple Sclerosis (MS) Support Group

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Eloise 02/08/2007

Having read nearly all of the messages posted, I have come to the conclusion that many of you on this site suffer with pain from your MS. This causes concern for me as I don't really have any pain that I can attribute to this disease. Will I? I am frightened that the pain will be next.

I have the incredible fatigue, the memory difficulties, coordination problems sometimes, visual change, numbness, tingling, cognitive difficulties sometimes, trouble falling asleep at night (I'm not sure this is a symptom, but I've never had trouble falling asleep until my dx!), fleeting depression, etc. I don't want the pain as well, but so many of you seem to be suffering from pain. I guess it makes sense that pain would go with this disease since it affects nerves. Nerve pain is horrible! I cannot even imagine how those of you with nerve pain get through the day.

What I'd like to know is those of you with the R/R type of MS, do you have pain? Where? For how long? Does anything help the pain?

Thanks--what a wonderful community I have discovered with Daily Strength!

Eloise

deleted_user 02/08/2007

Eloise,

Though I have SPMS now, and am therefore am not part of the "focus group" you desire, ;) I just wanted to pop in and say that "pain" is perceived and described differently by all of us depending on our tolerance for discomfort.

"Pain" can be intense tingling that won't stop. It can be the "charlie horse" feeling of a long spasm. It can be an aching tightness in spastic muscles. It could be the "electric shock" feeling of Lhermitte's sign. I could go on forever, I think!

For years and years MSers were told that the disease didn't cause pain, and there was a lot of needless suffering going on. That may be why you hear so much about it now. Pain CAN be a big part of MS, but like anything else, it doesn't happen to everyone, and seems to show up on its own terms.

Hope you find the info you need from the other members here!

-Karen

deleted_user 02/09/2007

Eloise: I want to second what Karen said, not everyone with MS has pain. I don't, never did, and I was diagnosed in 1988. There have been times that I had what I perceived as pain but it was always discomfort caused by meds I was taking. ie, Avonex caused extreme hypersensitivity to touch & sound; that was painful. My 2 cents.
Cathy

deleted_user 02/09/2007

WELL I HAVE RRMS AND HAVE PAIN BUT I TRY TO LIVE WITH IT AND I ONLY TAKE IBROPHIN FOR IT( ADVIL)MY NERO SAID THERE ISNT PAIN W/MS AND THAT IS BS,MAYBE NOT ALL PEOPLE BUT I LOK AT PAIN BEING A GOOD THING THAT I EVEN FEEL PAIN THAN NOT FEEL AT ALL.

deleted_user 02/09/2007

Eloise, I also agree with Karen. Pain comes in all forms. I did not have pain for years. I was dx'd w/RRMS in 1994, I did not start having pain until 1999 and it did not worsen until the end of 2000. My neur.said one did not have pain w/MS. Boy, was he wrong!! From year to year, the pain changed from nagging aching to tightness to burning. It is in my hands, legs, neck, back, feet and shoulders. Sometimes I tell myself that I am a mess with this MS. LOL. Now the dr's have finally acknowledged that MS patients do suffer with a little pain to chronic pain. As Karen also said, it does not necessarily happen to everyone! I am on different nerve blockers because the opioids did not work & my doctors did not want me to become addicted. Continue to let your doctors know the different changes you are experiencing. Best wishes!
Chris

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