Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-30-2006, 08:31 PM #11
InHisHands InHisHands is offline
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Originally Posted by JOAN_M View Post
it is written in several medical journals, that the dose of neurontin for rsd patients should be no more than 400mg three times a day, and that anything over that dose really does not help and can be dangerous. i take that dose and do well with it. i did try to up it when my pain got worse and got very confused and felt awful.
it is better after the 400mg tid, to try adding something else. hope you are feeling better

Could you please tell me about these studies/ medical journals (like, the names and such so that I can try and look them up)?? I am interested in learning about the use of neurontin in RSD patients with dosage and such. Thanks.
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Old 05-14-2009, 08:14 PM #12
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Originally Posted by daylilyfan View Post
I was on that much in 2001. I just could not think right --my boss was on me for performance problems and then I forgot where I was going one day driving to work. I called the doctor and said if I don't get off this, I am going to be fired from my job. There were other problems with it too...

I came off it over 4 days under Dr's supervision.

I felt like I had a TERRIBLE case of flu. Except no vomiting or diarheah (sorry I can never spell that!) That was all. I felt bad, but the neuro said it would be ok. The achy body, headache, flu-like feelings lasted a few days, then all was ok.

I felt so much better after that stuff left my body - but it did take a couple months for my head to clear.

They switched me to Topomax, and I've never looked back. It's been much better for me!!

Good luck with this.

Jules
Hi, I'm having a terrable time with the w/d. It's the cloudy head that is scary. Any advice? Thanks
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Old 05-14-2009, 11:37 PM #13
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colindine can help with the withdrawl SX also it a takes a while to get over them depending what you are coming off of and how much you were taking and how you have come off of the meds..

welcome to the group jump in anytime ask away!!!

carrie
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hope this finds all in less pain
.



rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




please check out our website to help bring awareness to RSD!


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Old 05-15-2009, 01:29 AM #14
Jennelle Jennelle is offline
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Heart ask your doc

Tell your doc what is happening and see if they have any samples to get you through. Also talk to the pharmacy, some have plans for certain meds that are only 4 dollars. Next maybe your regular insurance could help. CALL WORKERS COMP....maybe there is a glitch. Do you have a case manager...call him/her. As for the symptoms to expect, dizziness, sweating, feeling hot/cold, feeling like you have the flu. But this is VERY IMPORTANT....COMING OFF THIS WITH NO WEANING CAN CAUSE SEIZURES AND SWELLING IN YOUR BRAIN...DO NOT LET THIS GO....FIND A WAY TO GET SOME EVEN CALL EVERY ONE YOU CAN TO HELP EVEN FAMILY MEMBERS TO GET A LITTLE MONEY FROM EACH. IT IS DANGEROUS....TALK TO YOUR PHARMACIST AND LET THEM KNOW HOW LONG YOU HAVE BEEN ON IT AND THE WILL KNOW HOW SERIOUS THIS IS. THEY MAY WORK OUT A DEAL WITH YOU BUT GET IT IF YOU CAN. CALL YOUR DOC, IF THEY DON'T HAVE SAMPLES ASK IF THEY CAN CALL OTHERS (LIKE NEURO PLACES) AND SEE IF THEY DO. YOU CAN'T GO OFF COLD TURKEY IT IS DANGEROUS TO THE EXTREME!
I don't want to scare you but I don't want you to become injured or worse because of workers comp crap. Tell them at worker's comp that it is life threatening and let them know you need it asap...
hope this helps,
Jennelle






Quote:
Originally Posted by ms_kathy View Post
I am really in a pickle and thought I would ask advice from this group. I have RSD/CRPS in my right arm do to an injury at work three years ago so my medical is being paid by Workers Comp Insurance. I just went to pick up my supply of Neurontin last night and I was told that the Workers Comp Insurance rejected the payment. I have been on 3600mg of Neurontin for three years now and I will be completely out of medication tomorrow.

I am terrified that something is going to happen while going through withdrawal tomorrow. Can anyone tell me what to expect and is there anything I can do to protect myself against harm or stroke?

Thanks in advance
Kathy
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