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#1 | |||
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Senior Member
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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.
![]() 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!
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_____________________________________________ .....Judy SPMS -- FIBROMYALGIA -- Ouch! and Ouch! . |
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"Thanks for this!" says: | AfterMyNap (06-28-2008), Dejibo (06-29-2008), Jappy (06-28-2008), MSacorn (06-29-2008), Riverwild (06-28-2008), SallyC (06-28-2008), weegot5kiz (06-29-2008) |
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#2 | |||
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Magnate
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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! ![]()
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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"Thanks for this!" says: | Judy (06-30-2008) |
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#3 | |||
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Wise Elder
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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.
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. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
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"Thanks for this!" says: | Judy (06-30-2008) |
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#4 | |||
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Grand Magnate
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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
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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"Thanks for this!" says: | Judy (06-30-2008) |
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#5 | ||
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Member
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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. |
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"Thanks for this!" says: | Judy (06-30-2008) |
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#6 | |||
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In Remembrance
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | Judy (06-30-2008) |
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