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 11-30-2010, 10:43 AM #21
lou68847 lou68847 is offline
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I have been on it for about 9 months now, I have gained weight also , But not
been very active as I got let go in July from my job.
When I first started taking it I felt loopy . That has gottten better.
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Old 12-01-2010, 05:30 AM #22
unicorn1979 unicorn1979 is offline
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Quote:
Originally Posted by Momlovetobake View Post
I have just been prescribed this drug and I was wondering what your thoughts are on this?
i took it for about a year before stop with out get dr ok when ran out and could not get any for few days then saw how it messed with my mind forgot so many thing could not pay me to go back on that med
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Old 12-26-2010, 11:27 AM #23
jemjeff10 jemjeff10 is offline
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Originally Posted by lou68847 View Post
I have been on it for about 9 months now, I have gained weight also , But not
been very active as I got let go in July from my job.
When I first started taking it I felt loopy . That has gottten better.
well I have been sick with meralgia paresthetica pinched nevre on my left side since 2003 too that simmer out of work pain was bad i was on that neurontin then now since may 2010 i been diagnosed with diabetes my leg is just on fire pain is a 3 inmorning and a 7-9 at evening taking metformin glyburide lisinopril atenolol for hp and diabetes feet are burning hurts to walk legs and calf swollen sore i still take neurontin two - 3 pills a day 600 mg little relief but becarefull they can make you pass out eat with the pill I take percocet they help feel like I may have to go out of work cannot function safely and pain hurts puting pressure on left side walking I gained weight which does not make sense I diet because of diabetes I an up 20 lbs since may when I started on them again ! good luck !!!
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Old 12-26-2010, 07:35 PM #24
Reddawn600 Reddawn600 is offline
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Quote:
Originally Posted by daniella View Post
I am on neurontin and now am on 2700 but not sure I feel any benefit. When I was first increasing this med I thought I did though. I tried this med a few years back but quit cause of the side effects I felt which were a dizzy out of it and pressure in the head. Then tried it again about a year and half ago and pushed through the side effects gradually increasing and those side effects did wear off. Just the first few days of the increase are ruff. Like others said we are all different so for myself I just try to give a med a chance and not fear the side effects etc so much and hold to hope it can bring relief. Hope it brings your relief.
Dawn that is odd Dr S said to not increase more then that dose. What was his reasoning cause I heard many people for relief need 3500 even?
Daniella,
I'm not sure as I was getting a ketamine infusion while speaking with him so was fairly out of it, I just remember that was what he said and I confirmed it with the infusion suite nurse before I left. Maybe it was due to other meds I'm on? I'm not sure. However, I've gone up to that level and really haven't noticed any difference. It was interesting you mentioned pressure in the head as I've had that but with everything going on, was unsure what it was due to. I think I may try going completely off it for a bit to try to see if it's really helping me at all.
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Old 12-28-2010, 08:24 PM #25
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Originally Posted by Momlovetobake View Post
I have just been prescribed this drug and I was wondering what your thoughts are on this?
I have taken both Neurontin and Lyrica. Lyrica helped the pain better than any other drug I've ever taken, but the side effects are unbearable. I gained an average of 8 pounds PER MONTH, EVERY MONTH that I took Lyrica. My vision also decreased to the point that I no longer can pass the State Driver's License Test - ( yea - real bummer ). I quit taking it, hoping my vision would get better and my weight would return to pre-Lyrica times, but 2 years later and NO IMPROVEMENT in either area.
I would definitely give Neurontin a try. It was not strong enough for me, thus the Lyrica for me, but perhaps it will help you. It does require an adjustment period, but many drugs do that and it is worth it .... after all .... RSD is a long term battle.
Good Luck with the Neurontin should you decide to try it - and my suggestions would be to try it if your doctor feels it is appropriate for your symptoms.
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Old 02-26-2011, 08:47 PM #26
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I have had CRPS since September of 2008. In only one of my toes, for cripes sakes. (byproduct of 2 surgeries).

Neurontin has been EXTREMELY effective for my symptoms.

I take 600 mg, three times a day.

Per doctors orders, I tried weaning myself off of it, but it didn't take long before symptoms became unbearable, so back on it.

It has really been a godsend for me. A bit of dry mouth and some occasional nausea, but not bad really.

It is often the first medication prescribed for CRPS. And for good reason IMHO.
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Old 02-27-2011, 11:08 AM #27
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I was on it for for about 8 months up to almost 3,000 mg and finally stopped it when I started Topamax and I now realize, I don't think it was ever really doing anything for me at all.

I think i benefit more from a very small amount of Klonopin to keep my nerves calm.

It definitely helped put about 20 pounds on me but that's about it.

Dawn
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Old 02-28-2011, 02:14 PM #28
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It was one of my original meds. I did have some degree of success with it, although I did have to repeatedly increase my dosage. I also gained a significant amount of weight, and ultimately switched over to Lyrica.
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