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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Aloha everyone! A Friday night and we are all finding solace in this board! Funny 9 years ago I'd be planning to out. I'm only saying this, because my 18 year old daughter, who just got out of rehab, had her Love of her life move back here from Chicago, and they are climbing the walls with nothing to do. Made me think of the the pre- RSD days! ;)
Anyhow I've been reading about the new drug Lyrcia ( spelling?) on this board and when I asked my doctor she never heard of it, and she's only 33, but knows RSD. Her speciality is diabetes. Anyhow when I saw my daughter's dr. I asked him, and he knew all of it, and has prescribed it to patients with shingles, and neuropathy, and diabetic pain patients. I was shocked that he was so knowlegeable. I thought maybe it wasn't approved for the US. So my question is is anyone taking it, that had been on NeROTTIN (Neurontin) and does it have the same side effects. When I was on Neurontin, I never walked into so many walls or felt like I couldn't think, or I'd be driving and forget where I was going!! :dizzy: Yes I was one dizzy blonde!
My daughter's dr. said it works for nerve pain and it would be worth trying for my RSD. Makes me wanna think about switching Dr's, too. So all you fellow RSD'rs, has any of you tried the two drugs? Are the side efects the same? Does it work on nerve pain? The stabbing , burning, knife-like pain that never goes away? Any input would be great. Hope all of you at least reminisced for a second of what it was like to be 18 on a Friday night! LOL Aloha Skooze :)
Lyrica is a new drug, made by the same people as neurontin, that was developed with nerve pain in mind. I was on neurontin for about one year. I like you felt scatter brained and deeply depressed. I was also in a great deal of pain while taking 1800 mg of neurontin. The doctors wouldn't go any higher because of the side effects. I felt doomed. My GP told me to go and see one of his neurologist friend and if she couldn't help he was going to send me packing half way across the nation to find help. I must say that I almost didn't go to the appointment. I didn't think I could emotionally endure another doctor telling me they couldn't help me, but my husband made me go anyway. She suggested Lyrica. Telling me it was "worth a shot."

She gave me samples or I might have just brushed off the advice. Two days after being on Lyrica I began to see light. That is the only way I know how to describe the lifting of the great depression I was in. Within a week I was feeling some pain relief. I have been on Lyrica for 3 1/2 weeks. I feel better than I have since my surgery that led to RSD seventeen months ago. I went to see a high school football game last night just because I wanted to get out. Before I only got out when duty called. I will not say that all pain is gone, but it has been decreased so greatly that I feel I have been freed from the prision of RSD. I am hopeful that I will continue to improve and go into remission.

I can't say what this drug will do for others, but I hope that some will experience the relief I have found. My only noticable side effect is dry mouth. I will take that any day over the pain that plagued me. The reason your doctor may not have heard about the drug is because it only became available on September 21st of this year. Hope this helps!
penny
[COLOR=RoyalBlue]Hi Guys,

Robert, that's great news about Sansy! I hope it continues forever!!! I think you have a point about your not wanting her to overdo. It's very easy to do when you're feeling okay so if you don't want to be the one to tell her, tell her I did :). I just don't want her feeling it tomorrow. I don't know how sedentary she's had to be during this time with RSD, but she's bound to feel it if she's been sedentary at all during that time. Congrats again :).

Sharon :)[/COLOR]
WOW GUYS & GALS>>What an overwhelming, encouraging, promossing replies to my question on Lyrica! Maybe they should have named the drug Euriika! ;)
If it's only been on the market since 9/21 this probably why not all medical professions are on top of it. Hawaii is always the last to get the latest trends etc. I mean after reading Penny's first post, I was so hopeful and after reading everyone elses I'm sold :bouncing: I'm going to schedule an appt. with my daughter's dr. first thing tomorrow, because I know he has samples and he is 5 minutes away vs. 30 miles. Also if Pfizer is the manufacturer, I'm already enrolled in their partners in pain program where I qualify for free meds that they carry. My pharmacy though doesn't carry it, But if they get a prescription they can order it no problem! This is such good news to hopefully, be human and free from the knife! :bouncing: That burning pain.
As far as dry mouth goes, I already drink 5 times 64 ounces of water a day. My kids said if ever we had a huricane, I'd be in deep trouble which made me think of Robert and Sansy cleaning up after Katrina! I'v already started storing empty jugs up in my attic. And very interesting Robert about thee role reversal point. I too was bedridden for 2 years in pain, and my 2 girls took care of me. They were 10 and 14 then. It took alot out of their social life. But since I started my STS machine and stopped using my cane, they were so happy to even be active with their school and friends. So I can relate to Robert what you are going through. Just tell Sansy to take a break every now and then, because if she fell she could be back to square one. And Bernie you spelled those words correctly :) but sounds like you never had the NeROTTEN to compare it too!
Yeah I could be ditsy for a few days, as long as it goes away. You guys are the best. My 18 year daughter is driving me crazy right now since her boyfriend moved back here, and keeps coming over to eat and hangout. Time to give them the ultimatum--RENT! And shut off her cell phone.She hasn't worked any extra shifts since he got here and it hasn't even been a week. I've been taking extra xanax just so I don't stress out and flare up the RSD. Yhanks for all the input. I'm printing this thread and showing it to my doctor tommorrow, :bouncing:
Aloha Skooze
Aloha Karyn! I think Sunny answered your question about the tapering off part the best. I've been off NeROTTON for over a year, yet I still sometimes have what I call a NeROTTEN hangover. It's not as bad as it was a year ago, but I did not have a replacement drug to calm the burning, stabbing, knife-like nerve pain that us RSD'rs experience. I was pretty tired all the time, incoherent, not know where I was going, or losing my thought in mid sentence. Like I was drunk 24/7.Or like being a dizzy dumb blonde. Ditsy>>is dizzy times three :D It took me a good 6 months to overcome the drug and they had me on 600 mg. times 5 a day. As most RSD'rs, we are desperate to try anything. I think it's great that you can decrease the Neurontin and take Lyrica at the same time. Almost makes you wonder what they will come up with next.
If Sunny said her husband switched right away--I would go that route. Once you stop the Neurontin, you might even have more energy. I read somewhere that 10% of the population with RSD have type A personalities. I'm a type A and that's why my lawsuit took so long to prove to the work comp people that I had RSD said my attorney. Sounds like you are also a type A, and I wish you the best in your studies and endeavors. Just remember the less invasive of a procedure you have done, is more better because of the risks involved outweigh the procedure. I wish you luck. Aloha Skooze :angel:
First I want to say, I am so glad that there is a sight for RSD/CRPS available. When I was diagnosed with it in May of '05, the devastation was incredible, not to mention the pain. I went throught this (and was also on the Neurontin...made me gain weight and I was very sick all the time) and then my shoulder began to hurt again. Two shoulder surgeries were the apparent culprit of my RSD in my right arm. I had another open-shoulder surgery and they removed a large bone spur in October. I haven't had any arm pain, stabbing or burning since. Perhaps I was mis-diagnosed? Any thoughts on this from anyone? After all the 'stellate ganglion block' injections I had to have, it's frustrating, however, if it was a false diagnosis, how would I know?
Thanks for any advice anyone would have for me. ~sleepyinIA
Hi SleepyinIA and welcome to the boards! This the best board that I have ever been on for RSD.
To answer your question--It would be helpful to know how many blocks that you had. If they dx'd you in May 2005, and you had nerve blocks--before or after your surgery?--that your RSD could have gone into remission, which makes you very lucky :D I'm happy that since your surgeries to remove the bone spurs and your pain is gone is wonderful. But I don't think that they mis diaganosed you. If it is in remission, like we all want, it's possible that it could come back. I don't mean to worry you, but you need to be aware that it could. Just keep doing what you are doing that makes the pain go away, and keep checking this site. Again welcome and congrats! Aloha Skooze
Well said acirtapo! :D
And let's not forget about that RSD brain residue we all have and will probably always have. Aloha Skooze
OOPPS I posted this twic somehow! That RSD brain ;)
:)

Hello folks,

I haven't posted in some time been way too busy with living life the best I can and for the most part not up to typing and posting.

I've been on this new drug for about four months now...because of some things I had read here I asked the Dr.'s to give this one a try....and I must say for the most part I am glad that I did...

The problems with my vision are gone, the tongue tied, thick talking is gone, the stumbling over words or the lack of them is gone too....the foggy brain is gone and that is a plus for me!

All and all I am very happy with this drug...and happy to be off the "N." While I must admit that my pain level was less when I was on 800 MGS. of N five times a day, I couldn't see to read, watch TV, type, etc...my brain didn't function as well as it should on this drug....now all that is gone and I am very happy about that!

I don't seem to have any of the side effects of the "L" drug and that is a good thing...the only thing I might have at this point started about 3 weeks ago....I have had "Vertigo" many times in the past 5 years and I thought I had another spell of it 3 weeks ago....now after reading all the info on "L" it might just be one of the side effects of "L." DIZZY.....but i's not all that bad for me and well worth the change in meds.....

I had another spinal block 3 weeks ago also, as of now, no improvements...so, we won't do another one for a while.

I'm very happy for the most part my pain level has gone from a 10 PLUS down to about a 2 to a 3 most of the time...climbing up to a 5 at times! I have no complaints really with that...and the RSD still seems to be only in my right foot from the ankle down.

Who am I to complain?

Now If I can get rid of the weight I have gained from taking all that "No-rotten" I will be more happy...and being able to exercise will be a wonderful thing as well.

This board is a blessing to me, even when I don't post....

You are all in my heart and prayers each day...may you have some pain free moments tonight and the rest of this week.

Blessings,

Hubbard

<><
:angel:
I have been on neurontin for 10 years for RSD and I have never had any of those feelings you all describe. My Doc did say that neurontin in combination with any other type of drug will intensiy the other drugs effect mainly any pain meds.I am only on 100 mg 3 x aday though.Elival also has helped a great deal with the pain.
Hi Brigus1 & welcome to the boards! It's a great site for us who suffer from this terrible monster that has invaded our bodies and life.
I'm glad that the Lyrica is working well for you. I have yet to try it, but it sounds like others are having for the most part good results. Are you on any drugs for muscle spasams--such as soma or flexeril? I would be totally lost without my soma. If I miss my dose my digits in my hands and toes go numb, especially the fingers, because my RSD is in the upper left extremity. Where is yours, and how did you get it>from an accident or work injury?
Again welcome to the boards and if you have any questions just ask away. People here are great and we've seen and been through it all.
Aloha Skooze :)





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