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Old 08-22-2011, 10:11 AM   #1
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Join Date: Aug 2011
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comancheflame HB User
Unhappy Anyone out there with Central pain syndrome?

I just quit pain managemet, about 2mnths ago. The treatment no longer works enough to qualify the side affects (sp?) of the meds. I have visited 4 different pain clinics who have tried to manage this horror. I have been bedbound for 5yrs, and the pain is a nightmare. The pain is not much worse since I quit the meds. From my research, I understand that the only treatment is sedation, but Doctors do not want to do this (due to quality of life of a sedated person). I say what life? All I am able to do is lay as still as possible, any movement makes it worse, the movement of air on my skin is unbearable. In the past I only left my home for Doctor appointments, or through an ambulance ride to the hospital to rehydrate, and stop the vomiting from the meds, and gastroparsis caused by MS 39yrs which is the cause of this pain. Now since I am off the meds, I hope not to have to endure the feel of the air movement on my skin.
QUESTION: are there any natural ways to deal with pain?

 
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Old 03-29-2012, 04:02 PM   #2
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Join Date: Mar 2012
Location: Eilat, Israel
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zapit HB User
Re: Anyone out there with Central pain syndrome?

I kind of hit the jackpot, with complex regional and central pain. Was at the time unable to walk due to the pain and spent a total of 5 years in a wheelchair. I tried virtually every "alternative treatment" that I had heard of, and some that I never even knew existed. I wasted endless hours, a bloody fortune and ended up enduring even more unneccesary pain. My doctors are world renouned for their unwillingness to prescribe opiates ( and an obsession that all epileptic seizures are psuedo). Medically, I think I was prescribed almost every non opiod med, that had some success with off label use as "nerve pain" treatment. I eventually found an aneathitist who showed some intrest and although it was a 6 hour journey to see him it proved to be a worthwhile one. With morphine and a syringe driver, he had me up and walking within 6 weeks.

I understand 1 persons experience is not much to go on, but I have tried a huge number of alternatives, ranging from the familiar ie. acupuncture,homeopathu, reflexology, to the complete bizzare, witchdoctors, spiritulist and totally psycotic faith healers.
I have subsequently moved to Israel, and found a completely different ethos amongst doctorsTheir philosophy seems to be that no patient nees to be in pain, if there is any way of preventing it.once it was determined that it was a genuine pain condition(CRPS was determined by skin temp readings, and a couple of EMG's) no medication was out of bounds. Opiods are in my experience, the ONLY viable treatment for central pain. I am on large amounts of them at the moment, due to a botched RF ablation, but it is great to be able to put blankets against my skin, and wear a pair of jeans. I can take a shower with out feeling like its napalm hitting my skin. I spent 10 years in the condition you are describing, so I do understand that. Strangely enough, in a country that seems to be far free'er prescribing opiods, I have seen only minute numbers of people abusing their meds???We still get the old" abusable" tabs of oxy. Long post, sorry, but I hope it's of some use to you.
All the best and hang in there. Relief is possible.
Zappa.

 
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Old 04-06-2012, 07:33 PM   #3
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Join Date: Feb 2010
Location: us,montoursville,pa
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backman01 HB Userbackman01 HB User
Re: Anyone out there with Central pain syndrome?

Glad you found some help the drs in pa dont want to give anything that works,its crazy,
i have leg,lower back pain, i cant get any help.

 
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