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 06-27-2007, 04:13 AM #1
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Default Reply to Glorybeeric...

Replying to:
http://neurotalk.psychcentral.com/sh...28&postcount=6
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Originally Posted by glorybeeric View Post
Have been taking 300 mg neurontin for about 4 months. was to have started with 1 cap for week, increase to 2 for two weeks then to 3 caps..
Did ok with 1 cap... started 2 and I felt dizzy, tired, exhausted, fatigued all the time. plus I was not in control of self and worse, could not think straight and my sentence structure was unfinished sentence or one started and working in incomplete dictionary. NO mind .... NO pain!
Cut back down to 1 cap and do OK.
Suffered lots from UTI but good urologist took care of that!
weight gain, some or just maintaining.
Have diabetic neuropathy as am type 1 and for most part am in control. However, with the medictions, I seem to forget when to give extra bolus!
Have Osteosporosis, mid to advanced stages, have rheumotoid Arthritis as well, and other problems.

Suggested that I go to Pain Management physician! NO, I think Not.. I am in control not the doctor. Think PM doc is over rated and I am not taking more medications. Once the neuropathy symptoms of tingling, sharp jabbing pains, spasms, dead feelings, etc stopped, I can manage with a "tylenol arthritis" as need be or if worse a half an oxycodone cap helps. I am not a pill pusher ! So, no Pain Managment for me!

Doc now suggests Lyrica.............
which is the worst of the two Neurontin or Lyrica?
which has the worst of side effects?

Any comments on all this

glorybeeric
Hi Eric,
and .....welcome to the forum!

You popped up in the middle of Desi's thread - hard to spot you hidden in the undergrowth, lol!

Hope you don't object to being moved to a fresh thread, but you should hopefully get a much wider response this way and we can concentrate on your several topics without edging in on the other thread. BTW, if you need quick answers, search the forum - advanced search, select only the RSD forum and click for "posts". Some of these topics have come up before, I remember.

You sound a bit like me, btw, arthritic and sensitive to neurontin, I'm low-dose too, but I've no experience of Lyrica. Many others here take it though.

I'm on about 600mg of neurontin per day which I take in a totally unorthodox fashion (OK'd by the doc) - I open the capsule and mix it with water (it's water-soluble) then take it in half doses twice as often, so 150mg x 3 or 4 per day, depending on how I'm reacting to it. Some days I can tolerate it more than others, but in general it suits me, so long as I take it like that. Oh, I'm not advocating this method of dosage in any way, it's just what works for me. Doesn't remove the pain, but pushes it to the background.

I've been taking it now for 3 years, still haven't got used to it...I get the exact same side-effects as you, including memory fog, exasperating, isn't it?! Any higher dose and I feel I'm tripping out, but without the feel-good bits . Bummer.

I also have osteo, plus cervical spondylosis and spinal stenosis (C4-C6) and rheumatoid rather badly in my hands. And I have diffuse RSI too. I'm having more tests done right now for the rheumatoid arthritis which I fear is starting to make itself felt in my hips.

Gawd! It never stops, does it!...

So, pain management; well I get it all prescribed by the docs, but I could opt for PM. For me it's a question of location, I live on an island quite far from anywhere useful, lol!

I think, though, as more doctors are getting locked up in clink for dispensing too many meds, the trend is more towards the PM set-up.

[start rant]----> My view of that is, I'm sick of governments treating us all like babies, but I know it's worse than that; most of these meds are made from natural substances, many growing wild and free I somehow think medicine should be owned by us all. And the hypocrisy of it. Booze (still so freely available, thank goodness) cigs (almost illegal) meds (virtually all illegal unless bought through legal drug runners like the world's government medical systems) and meanwhile, the illegal abuse of hard drugs worldwide is epidemic - this whole government drug cartel thing is really peeing me off - artist shouts at governments in general: "It's not working, guys!" Well, it is working for the government coffers and to hell with the people...BUT.. enough already.. ----> [/end rant] Now see what you started, lol!

Anyway, PMs? Each to his own, is what I say. Every one's situation is different, some have better docs than others, some docs are clueless but local PMs are quite well up on the RSD info - many here, like you and me, have RSD alongside other conditions. Or location problems, like me... So, there's no way to generalize, or have "rules" about any of this, surely, it's just whatever suits you...no?

Anyway, I've gone on long enough, but I'm so glad you found us.
Is your pain technically from RSD itself, or from diabetic peripheral neuropathy which, as far as I can see, are identical? Just being nosey, lol!

I really hope we can be some help to you,
all the best

Last edited by artist; 06-27-2007 at 06:28 AM. Reason: yargh..zillion typos..
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Old 06-27-2007, 07:05 AM #2
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Hi Eric, nice to meet you

I have no experience with Lyrica, but I dislike Neurontin intensely. The dr.s tried me on several different meds before I finally put my foot down and said "no more"... I will NOT be taking anything that messes with my serotonin that badly anymore.

Of course I am NOT saying that you or anyone else ought not to take the stuff. We all have our own individual levels of serotonin, as well as our own tolerances to meds of that nature. I just know that for me, the side effects are actually worse than any pain relief I might get for my rsd. I wish it were different... the people who take Neurontin seem to get a lot of relief.

Artist, I love ranting about the gov't !! Please feel free to rant away in a new thread, I'd love to join in, I'm sure others would too. (Have ya seen that new comedy, "Lil Bush"?? OMG, tff!
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Old 06-27-2007, 08:52 AM #3
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hi eric,
I take neurontin and have for years, and do well with it, but if there is one thing I have learned about rsd is that different things work differently for each person. you really have to try them, and make your own judgment, even about pain docs or using a pcp. i use only my pcp at least for now, but that is me. meds. and docs and treatments are not bad nor good, it is all about the individual. you are your own best advocate. my best to you as you take the rsd ride. joan
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