With pain being such a prominent thing for me and being diagnosed with fibromyalgia in addition to the now SPMS, I was wondering if anyone had been diagnosed with or knows of Central Pain Syndrome??? From what I've found, it's a difficult, if not impossible condition to treat. My neuro hasn't mentioned this, but he isn't a MS Specialist, The nerve pain is continuous 24/7. It either starts in my feet or "butt" and radiates up through my entire body to the shoulders and down my arms. Some of it goes to my head also. The pain kind of throbs and comes in "waves" feeling like every nerve is on fire. At times it's almost unbearable and I just have to cry being it's so severe. Has anyone heard of ANYTHING that may help???

Of course I'm in this lousy powerchair most of the time, can't soak in a nice bath, move much from the waist down, so it really limits activity. Was hoping maybe I missed something along the way and that magic pain pill is out there!

Well, today my car was finally picked up and is now on it's way to Maryland. Had a brief "twinge" of sadness, but I'm over it now. Just another thing this lovely disease has taken away. Maybe a handicap accessible van in the future??? We'll see. Took a couple pictures of it riding off into the sunset!! LOL

Thank you all for listening/reading. It helps!

Ahhh Judy,

I don't have any advice for the pain you are going through. I hope that you find SOMETHING that gives you some relief. I am sure there are others here who might be able to help with that. I'm not on any pain meds, just the Baclofen for spasticity. I have pain with that, but it's manageable with Baclofen.

I am sorry to hear about your car riding off into the sunset. Having any part of our independence taken away is another blow to our self esteem! I hope there IS a van in your future!

Hang in there! We're pulling for you!

Have you tried Gabapentin Judy? My husband Jim is on it. We are currently decreasing the dosage but it was prescribed for his "nerve" pain that was very similar to yours. He's also spms and in a wheelchair. Also, maybe try some rubber band stretches? They sell them at most athletic or physical therapy stores. Jim can't raise his legs by himself but the bands help him raise them.

Someone I used to talk to on a forum had this, and apparently there are "Chronic Pain Specialists" who can help. We have one or two "Chronic Pain Clinics" here in Vancouver, so I imagine you have them in the US too.

She used to always post the following website for getting information:

http://www.painonline.org/

I get this type of pain too, but so far have recovered from most of it after the attacks. I can't imagine trying to live with it.

Cherie

Judy, I am sooo sorry about the amount of pain you are in 24/7. I was like that from an accident and then the surgery. It took 21 months for the pain to ease up.

I saw a pain management doctor who was a former anesthesiologist, but some neurologists specialize in it too. There are pain patches that you can cut up and use for specific areas, there are different pain pills that you can use to take the edge off your pain so you are happier and function better.

They also are doing botox injections for muscles that cause problems. I hope you find a doctor who can offer you different ideas so you can see what manages it the best.

Pain takes all the fun out of life! Hope you feel better soon.

(((((((((((Judy))))))))))))

I don't know CPS, but elavil was all that helped my nerve pain. Lyrica might work for you too, for me, it did more for my muscles it seemed. But you know how it goes, they do different for everyone.


Do look up pain clinics. Mine is awesome, and my doc there did steroid shots (Not that this would help you but...) then also RXd me Flector patches and Arthotec pills for when I can't keep the patch on (swimming).

Something like that may help you.

Thing is, they deal in pain all the time, and if anyone would know, they would. Good luck, Judy. I hate that you're suffering.

I'm sorry you are in so much pain Had your neuro talked about a Baclofen Pump?

Another thought...you can go to the National MS Society's main site and use their search engine and type in stretching exercises. They have two; one you do yourself and one for a helper. It is important you move your limbs daily whether or not you do so yourself. You print out the main pages.

Take care.

So sorry to hear you are in so much pain, all the time. I wish I had that magic pill. I'd take it myself, and share with you and anyone who needed it.

Just know you are not alone. (((((Judy)))))

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you know sometimes its so hard to answer some threads, I mean what can I say that can help such a situation I hesitate to response sometmes. for this I am sorry to everyone its not right,

I am sorry for what you are going through, this may seem odd but i want to thank you, for opening my eyes, the self pity ones, this illness can do so many things, changes us forces us to accept, if we like it or not. Sometimes i forget i am still in early stages, using cane driving a lot less and other fun things, sure wish magic worked, would stay up a week straight to help heal everyone with magical words, instead I ask you to accept my kind loving caring words of friendship to let you know, you are thought of