PAIN AND MS

[young at heart]

I DON'T REMEMBER IF WE HAVE DISCUSSED THIS TOPIC OR NOT . JUST OUT OF CURIOUSITY , HOW MANY HERE HAVE PAIN WITH YOUR MS OR THE ONES NOT DIAGNOSED?

MANY NEURO'S DISMISS PAIN WITH MS , EVEN THE ONES UNDIAGNOSED.

WE ALL KNOW THAT MS CAUSES NEUROPATHIC PAIN,PAIN IN THE LOW BACK,OPTICAL NEURITIS CAUSES PAIN WHEN MOVING THE EYES AND SO FORTH.

I'M FORTUNATE THAT MY NEURO BELEIVES IN PAIN WITH MS,BUT I ALSO HAVE AA (ADHESIVE ARACHNOIDITIS)

MY NEURO HAD ME ON OXYCODONE 10/325 I THINK AND HAS CHANGED IT TO METHADONE.WHICH I DON'T KNOW HOW I FEEL ABOUT IT.MY WHOLE SYSTEM IS WONKY RIGHT NOW.DON'T KNOW IF ITS THE PAIN MED OR THE SINUS INFECTION.

HOPING OTHERS WILL SHARE THEIR STORIES OF PAIN AND HOW YOUR DRS.TREAT IT.I THINK IT WILL HELP MANY HERE.

T-LYNN

[grannyhotwheels]

Oh boy, don't get me started on these neuro's who don't believe that pain is related to MS.  I would love to have them live in my body for about 5 min. and I'm pretty sure they would change their minds.

I live with chronic pain every single day of my life.  There are days that it's tolerable and then there are days that I'm not getting out of bed no matter what you say.  (well, maybe a house fire could get me up) haha  

My feet feel like they are in a bucket of ice cubes all the time.  You know that cold feeling when it's no longer cold but aches horribly?  My lower back constantly hurts.  At it's worst, it feels like a knife twisting around.  Oh yea, the knife has been heated to at least 1000* degrees, because it burns like h#%L.  My shoulder and neck areas also have this same burning feeling and my neck always feels like it has a crick in it.  The electric shocks that shoot through my whole body, the jerks I have just when I picked up my morning coffee, the stomach pain from lack of bowel movements, (I had this before medication), and all the other stuff that I'm not feeling right this minute but will eventually.

So, all you neuro's out there who might be peaking in on us, please don't tell me that there is no pain with MS.

By the way, because I'm computer illiterate, I don't know how to copy and paste and all that junk, but I read an article where specialist in MS are doing studies that associate MS and CRPS. (complex regional pain syndrome)  I'll give you the address, it's incredibly long, and hope that you can see it for yourself.  It's really interesting and I also think that the link between the two is for real.  Most of us are probably proof of it.  Anyway, here it is:

http://www.rsds.org/2/library/article_archive/pop/schwartzman_gurusinghe_gracely.pdf

Sorry this is all so long, but it's hard to get to a stopping place when your talking about your pain.  Kinda like both are never ending. hahaheehee

Oh, one more thing I promise, I take methadone, oxycodone, lyrica, and dicyclomine several times a day.  Yes, I do have a lot of pain, but this mixture helps very much.

I'll be praying,
Carol

[shoshin]

Well, maybe I'll be the odd one out. My off-the-cuff answer would be that I don't have pain. Or not very much. I do have a lot of numbness, abnormal sensations, and what I think of as "unpleasant sensations," but not what I would call pain. For which I am very grateful.

But I do want to say that I have so much respect for all the people on this forum who manage to go on through all sorts of terrible pain and suffering. There was one evening last week where I was tired and out of sorts and then I just dropped the salad dressing  container for no reason and it splattered all over the kitchen floor (not a pretty sight) and I felt like crying. And I thought of all the people on here who feel like that or worse all the time and I don't know how you do it. Not without going crazy or taking it out on everyone around you.

I read recently an article about some kind of machine that can look at people's brainwaves and somehow tell what picture the person is looking at.

(http://www.****.com

If these machines get better, maybe they'll reach a point where they can read patients' brainwaves and then replicate that pattern in the neuros' brains so they will finally be able to understand the subjective experience of MS.

[princess73]

Just in case you are surveying how many have pain, fibro, ms, or undiagnosed: I am diagnosed as fibromyalgia, but everyone, except the doctors, think there is something not diagnosed causing this. I have talked to people with ms, lupus, fibro, rhematoid arthritis and most are concerned that I am not completely diagnosed. I have had pain in most of the body at some point. It all started 10/07.

[sllowe]

Doc Quiz'r --

You asked, and I've just GOT to take a poke at it.  Can your arm probs be from overuse  from 3 months ago?  I say yes.  You rested it, but surely you overcompensated for it during that time.  The initial tendon in the forearm didn't get any better, and you got the add on muscles/tendons around it screaming too.  You knitter you. . .

Maybe by using it differently because it was hurt, the others got involved and joined in on the party.  Not able to say anything you don't already know.  Just having fun trying to help, and hoping some chime in with some medical advice you've taught us through the years.  Anyone else want to take a crack at it - any thoughts?  Who is going to pull off the "A" today, what I've given may only pull off a low "C."

Also, I would ice it, and try to isolate it.  Include that elbow, you know how long they take to heal, and how the pain radiates from them up and down the arm. Yikes!

Have a good one,
hope it starts to subside soon,
SL

[denise61]

pain & pain & pain!!! Well I belive this intence neck, back of head, shoulder, stiffness,

PAIN!!!! chronic. and ear pain!!! I have had sence 1991. Also off and on trigeminal neuraigia pain, is when this all started...... so many DR.s. And I no now, wrong answers!!!  findly some how after taking mortion 800 mg.

Just about around the clock and hardly no relif..... a few years ago a DR. gave me nortripline!!!! OOOOO MYYYY GOODNESS the pain went away!!! only taking 25mg. one a day. but not the TN pain... that pain was happening every spring for about 3 years,

I was runing to the denist thinking i had a bad TOOTH!!! the throbbing, shooting, unbearable pain! the DR. gave me the percett the strong pain meds  FOR the pain  . and then a few months ago this PAIN started very unbearable pain from a hot shower!!!

The P AIN was a blistering, stinging , pain felt like my skin was peeling right off my skin!! like a very bad sun burn,  I now take neurontin and it makes my PAIN bearable, I hope all you can find some help with your  pain .

Denise

[Quixotic1]

Well, add me to the mix.  For me pain was never a big part of my MS until the Trigeminal Neuralgia.  It felt like the lower half of my face was rotting away.  But, I do have pain in my right lower back when the spasticity gets out of control.  It is so clearly muscle spasm.  I still have to sleep with my hips bent at 90 degrees and do stretches every day to keep that under control.

Now, I have a question for the rest of you about "muscle pain" that doesn't seem to be spasm related.  Last fall when I was doing all the knitting I got pain in my right forearm that felt like tendonitis.  I even know and can trace the offending tendon.  But, after a few months of rest, it is no better and now is not only along the top of my forearm, but also includes pain in the muscles along the underside of the forearm and in the biceps of the same arm.  When I try to lift something with that arm, the entire girth of the forearm hurts horribly along with the biceps.  It hurts to massage it and to contract any of the muscles.  

Does anyone think this could still be overuse from 3 months ago, so diffusely throughout the arm?  Or does anyone have just one area of very tender muscles?  I can't use an antiinflammatory of any kind (tylenol, alleve) because I am truly allergic to the whole class.  

Finally, the comment by any neurologist that pain is not a part of MS seems so bizarre as to be psychotic.  It is going in the Health Page that will be called "Lies My Neurologist Told Me."  (not MY neuro, you all understand)

Quizzically yours, Q