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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
On Wednesday, we asked my husband's doctor about Lyrica, thanks to the people on this board. He said that he has already tried it on some of his paitients and some are getting better relief. My husband is going to switch from the Neurontin to it, and see if it makes any difference. Because of the "ditzy" effects that some of you have talked about, he is waiting until today when I am home!
By the way, the doctor has gotten the Myobloc (Botox-like drug) in his office to try injecting, but he did not want to do two new things at once. He gave my husband the choice of which to try first. Because several of you have had good luck with Lyrica, my husband wanted to try it first. Thank you so much. So we will slowly switch over to the Lyrica this month and then try the Myobloc next.
Sunny
[COLOR=RoyalBlue]Hi Sunny,

I just wanted to wish your husband good luck with the new med. Let us know how he does.

Sharon :)[/COLOR]
Skooze, I think i was probably one of the first on the board to try Lyrica...I too was on the neurontin...and for the horrid side affects couldnt take it....Ive been pn lyrica about a month and a half...have notice a dramatic and i mean DRAMATIC reduction in the burning stabbing pain we all love so much. Lyrica is also an anti-sezieure and works totally different than nuerontin tho. As my doc described...the reason its so affective, it works directly through the spine, is also give for those with diabetic neuropathy as well as sezuires. Its been an amazing savior for me as I was ust coming off methadone and noticed a huge increase in the burning, stabbing pain. My Dr had just went to a conference on Lyrica and almost had it in hand as I went to see her. If given the chance Skooze, certainly give it a try. I will tell you.. I was very ditzy for about 3 days...it went away though and only returned with the increase and then again went away. It is pretty pricey though, i hope you have medical insurance to help. ( you know how those drug companys are). Anyway, theres my input...Lyrica is an awesome drug for the burning stabbing pain...give it a try and good luck to you....Claire
Aloha Skooze,
I am now on Lyrica. I started yesterday and really dont have any side effects yet... As for the Dry mouth, I have a metal flavor ( from the Hydrocodone I suspect )... The burning does goe away for a short while. There are different ranges of dosage..ie 25mg to 300 mg doses's. I am starting low to see the results 50 mg 3 x a day with the hydrocodone. i havent had the blond experience yet and no offence to those of this persuaison (my wife included) but I iwll definatly increase the dosage t get better results. It does work well with the hydrocodone but only lasts about 1 to 2 hours...I hope you get the opportunity to get it. Workers comp takes care of my bills for now but it is pricey in any event...I pray everyone on the board has a painlfree day...Here's wishing so... God Bless.....Bernie Aloha..Mahalo I probably spelled them wrong sorry...
This is Robert, Sansy's husband. When we went to Sansy's Dr. this past Tuesday he gave her one a month sample of Lyrica, prescribed methadone (which we filled that day), and she had the stellate ganglion block the next day. I think the block has worn off because the pain did start to return a day or two later, but with the Lyrica and methadone she is a changed person. She has her life back! She is smiling and laughing! She and surrogate daughter Annette are ramming around the house cleaning, doing laundry, straightening up all the hurricane remnants (we are at Katrina ground zero on the Mississippi Coast). I am constantly telling her to slow down, but she feels so good that she just ignores me and keeps going. My only objection is that now that the house is getting clean and straightened up, I can't find anything!

I have to say that I need to watch my attitude. She has completely changed in the last 5 days and I have to change from total caretaker for the last 20 months to a more normal husband role, and that will take some adjustment. All families and caretakers need to be aware of this and take time to think before they act and speak when the patient experiences such a dramatic change. It could actually be somewhat of a psychological letdown to not be so entirely depended upon. I can see how someone (not me, hopefully) could actually become resentful at the patient's new independence. I hope and pray that each and every one of you can find the level of recovery that Sansy has (and that it lasts for her...she says she's going to enjoy every minute as long as it lasts) and that your families' greatest problem will be adjusting to the new you.
Wow, Robert, that is great news about your wife! My husband has been on methadone, and started the Lyrica yesterday. He is getting the "ditzy effect" (thank you, Claire, for warning us), although, since he is not blonde, he says he feels "out of it", rather than ditzy. :)
As the "caretaker spouse", I know exactly what you mean, Robert. It is interesting to have to redefine your role. I hope my husband and I have that problem!! So far, there hasn't been as dramatic a difference, but it has only been one day on the Lyrica. I know about the fine line between taking care and smothering. At one point, my husband said I was too helpful, and he felt that I was giving him the message that he was no longer capable of thinking or doing anything. So I need to be careful about how I approach it, and ask if he wants help, rather than just doing everything.
Sunny
Hi Sunny, Ditzy was the best word I could come up with at the time..but believe me...i know how he feels. It is a feeling that should pass in a few days however and get better with time. If the Dr has ordered an increase, he may get the same lovely feeling all over again. If it works for him as well as it has everyone else, he will be glad to feel "out of it" "ditzy" or however we describe it. It was certainly worth that awful feeling I had. I hope it does show him some improvement. take care...Claire
[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
Ooooooh, kids, stress and pain. It's like the three musketeers. We're raising our 16 year old granddaughter so I think I know what you mean. Sansy's pain level definitely shoots way up when she stresses, and she has plenty of opportunity to stress. I think we can all benefit from some stress management. I just try to keep things in perspective and not let the little things turn into big things. It works...sometimes.

I wish everyone here a stress-free day.

Robert
Can anyone desribe the "ditzy" feeling when switching from Neurontin to Lyrica? I am finally sitting down at my laptop and trying to sort through the nerve pain meds... A few years ago a podiatrist severed my lateral plantar nerve in my right foot (lawsuit pending) and two surgeries later (3 months post op on the most recent one), we have removed part of the tibial nerve, but are still taking meds until the nerve pain "calms down".

A couple questions--how did your doc decrease the Neurontin and increase the Lyrica? How long did that take? Also, what helps the ditzy feeling and how long does it last. When I increase the Neurontin, I feel very tired for the time of the increase, but it helps when I keep myself busy--but take a nap when I need it. I am a grad student and want to make the best choice to make a med switch timewise... Could I start it on a Friday? Over Thanksgiving?

Thanks for the help,
Karyn
My husband was taking Neurontin three times a day. The doctor cut the dose in 1/2 to 200, 300, 300, and put 50 mg of Lyrica in addition at each time. This is for one week. Then next week, he will stop the Neurontin entirely and take 100 mg of Lyrica 3X a day. My husband says that the burning pain is definitely better. The stabbing pain is still bad, even worse because of the weather change.
He had the side effects for 2 days--lightheaded, slight loss of balance, not totally with it (ditzy), and sleepy. He would not recommend driving during that time. A three-day weekend should be enough. He started Saturday, and was driving on Monday.
Hope this helps.
Sunny
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:
:) Hi gang, :wave:
Just got off the phone with my pain manager and she had spoken with the Dr.'s at the University about the new drug.."L".....anyway, she said that they had tried it on a few patients and they had bad reactions to it and wanted off!
:confused: They complained about feeling "HIGH" and didn't like it!
I said, "I'll try it, give it to me!!!!" :D
So, they have just called it in and I have to cut back on my Neurotin and when I am down to 2 a day, then they want me to start out with taking the Lyrica at bedtime...breakfast and lunch the Neurotin... :confused:
Anyone else get that HIGH feeling or did you say that and because of the drugs I missed it? LoL... :D :D :D
Thanks again for your help and support. :cool:
Hubbard
<><
:angel:
Sansy has been having definite "impairment" but she went on methadone and Lyrica at the same time so we don't know if it's on or the other, or both. We're hoping it'll go away soon...one thing for sure: her pain is way down!

Robert
Hubbard,
I have now been on Lyrica for about a week. I get the high feeling, to top it off, my heart punds and skips a beat or 10 when I take it together with Hydrocodone...I found that when I take them seperatly about 2 hours apart and with food I dont have the pounding and I feel better. the lyrica does removes some of the burning as does the hydrocodone...One more thing, halucinations...watch out for the little green men and their companions !!! truly mesmerizing...Its weird but they go away when I dont focus on them..Yeah Im going nuts but at least I have company..the little green guys..lol..anyway take care God Bless...Bernie
It's interesting that everyone has different instructions from their docs--that just surprises me! I saw my OS today and we had a good talk. He said he called his Lyrica drug rep specifically about me, and they thought this would be a good change from 1200 mg daily of Neurontin. It is more effective, is more readily absorbed, and in studies, while side effects are similar to Neurontin, people are more able to tolerate this drug.

Since we decided to go ahead, he had the cast tech call his drug rep, who said I should stop taking the Neurontin cold turkey, allow my body a 7-day "cleansing" of no nerve pain drugs, and then start right into the 3 daily doses of Lyrica. My doc wasn't happy with that (neither was I frankly), and told me cut down the Neurontin over a week or two, do the week cleansing, and then start with the Lyrica.

Hopefully it will help, and I feel that I will be closely followed because it appears that I am his guinea pig :) Will let you know how I feel after I've started!
My doctor just prescribed Lyrica for me to treat heavy pain due to Polycystic Kidney Disease ( PKD ) and I am not having too much suceess after about four weeks. Can anyone tell me what dosage thay are taking. I think it might be the low dosage of 75mg per day and they are working me up to a higher dosage. Thanks Rodg. :confused:
I stopped taking Neurotin for a lot of the same reasons as ya'll about 2 years ago and did not replace it with anything. I have a question? Is anyone taking Oxycotin with the Lyrica? If yes how is it going. I also take Oxycodone for breake thru pain and Valuim. I will be calling my Doc this week and talking to him about Lyrica. If anyone has anything else to offer please through it out here. :D

Thanks for all the help and info. I know it has been awhile since I was on, but I do read all the post.

I pray everyone has a pain free day!!! (at least as best you can!!) :wave:

Take Care
Shay
I've been taking Lyrica for about a week (75mg twice a day) and have just now gone up to 75 mg three times a day. So far I haven't noticed any obvious side effects, and I think it's helping. Has anyone been using it long-term and found it to be of continued benefit or does side effects overcome the benefits?

Linda
I started on Lycria two weeks ago, only 75 mg a day, and the first day I had no pain until about 4:00 p.m., but I misunderstood my doctors instructions and stopped taking the Neurontin and Clonazepam all together. The second day, I so much pain that I took 300 Neurontin and one Clonazepam - usually take six. Next day had to take 600 Neurtonin and two Clonazepam. Then after six days I woke up and was so dizzy I could hardly stand. Went to doctor right away. He said he thought it ws because I cut back the Clonazepam too quickly. He said I should take 75 mg Lyrica for two more days and 3/4 of my usual dosage of other drugs. Then take 150 Lyrica and cut to half of my other drugs. After two weeks, we will analyze the situation. Have done that today and am not dizzy. We shall see. Laura.
I don't know a whole lot about Lyrica, except I think it is made by the same people as Neurotin. I was on Neurotion for bipolar disorder for almost 4 years, and found that when I went off of it, i was very shaky for a couple of months.
Hey Aicertapo:

So....have you followed the doctor's plan? How is it going with the Lyrica? I think it's actually really helping me. I had the first pain free evening last night in a long time (that's usually my worst time of day, and I always had to go to bed by 9:00 p.m it was so bad). Last night I actually "worked" until 10:45 p.m. - unheard of!
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
I posted recently about Lyrica saying that I started it at 75 mg and quit taking my other drugs cold turkey. Wrong. Dizzy and just not thinking straight and the pain was relieved the first day but came back. Doctors instruction now are to take 2 Lyrica, one morning, one afternoon, and take 1/2 the gabapentin and 1/2 the Clonazepam I was on. Have done this for the past 4 days and am happy to say, very little pain left and it has also help with my arthritis pain so I take less Celebrex. I believe the plan is to do this for 2 weeks, go back and then I will take three Lyrica 75 mg and drop to 1/3 the other drugs and finally a week later i will stop them all together. Doctor says stopping the Clonazepam cold turkey for two days was what made me so dizzy. I am a little dizzier than usual right now but he says that will wear off once I get used to the Lyrica. Here's hoping. Laura.
Hello there peoples,
Our experiences with the two drugs depend on the individual. I had the runs on neurontin and didnt with Lyrica, but the memory ditzy thing is worse on the lyrica with me! BUt it is the only side effect, I have to think harder! LOL I am studying at Uni whilst on this!!! Yes the memory thing does not help! Especially when your only 25 and trying to make a living!
JUst remember some people react differently to different drugs. I went from 3600mg Neurontin a day to 600mg of Lyrica a day. (Both max doses) this is the only drug besides Trental I can tolerate, tried the opiod patches and I vomited very muchly and slept for about 36 hours!
Glad to see some one enjoying some relief!

Mel
[QUOTE=melgus]Hello there peoples,
Our experiences with the two drugs depend on the individual. I had the runs on neurontin and didnt with Lyrica, but the memory ditzy thing is worse on the lyrica with me! BUt it is the only side effect, I have to think harder! LOL I am studying at Uni whilst on this!!! Yes the memory thing does not help! Especially when your only 25 and trying to make a living!
JUst remember some people react differently to different drugs. I went from 3600mg Neurontin a day to 600mg of Lyrica a day. (Both max doses) this is the only drug besides Trental I can tolerate, tried the opiod patches and I vomited very muchly and slept for about 36 hours!
Glad to see some one enjoying some relief!

Mel[/QUOTE]
[B]Hmmm. So you had better results on Lyrica. That's interesting. When I ran Lyrica by docs they said that it is in the form of Neurotten. So with that in mind, I told them no way b/c I don't want to go through hell again. I guess all body types are different.[/B]
I don't know whether it is stated somewhere above this level but I learned that the difference in Lyrica and Neurontin is that Lyrica operates at the Spinal level, preventing pain messages from getting to the brain. I guess you could say it operates a little like a block. I am only on 225 mg and it has done more for me than 6 mg of Clonmazepam and 900 Neurontin. First two weeks I was very dizzy but that was partly because I stopped taking the Clonmazepam all together and one cannot just cut oneself off that type of drug like that. At this level, no dizziness. Whether memory is worse is a point to consider since I have been on so many drugs so long who knows what my memory would be like without them??? :jester:
Well said acirtapo! :D
And let's not forget about that RSD brain residue we all have and will probably always have. Aloha Skooze
I was wondering if anyone has had a loss of appetite, I have found that I am much less hungry.This would be wonderful for me since I need to lose about 50lbs.
Thanks to all Joy
Hi JoyI And Welcome to the boards. Please check out the post by Warmnsunny--Looks like that they are having opposite effect. Although I guess it all has to do with age, menopausaul, etc..... Lyrica is still new out there, and my PCP, who specializes in diabetes, was against me trying the drug out when I posted the thread is Lyrica better than Neurontin! But I'm hypoglycemic too! I hope that someone can answer your question. Good Luck Skooze :)
OOPPS I posted this twic somehow! That RSD brain ;)
I'm having a rough day I don't know how to erase these---UUUURRGGGHHHH!
Guess it's time to go to bed. Aloha Skooze
:)

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 finally reached where my doctor says Lyrica should be doing some good. I am at 300mg twice a day and I am feeling some relief. The stabbing pains have decreased but the spasams are still there and I have the jitters. Lets hope this is what we all need. Good luck everyone....Rodg
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 :)
What a wonderful, informative and inspiring thread. I read the whole thing. It answered a lot of questions for me. I have been wondering why my tongue feels so large lately.

Have been away from the board, but always thinking of fellow RSDers. You can always find an answer here.
Wow Robbin... I guess only sleeping 4 hours and still be tired is not good but I envy those who need little sleep. Have you ever know someone like that? With boundless energy and needs little sleep. I hate em.... lol

Have you always slept so little? Everyone metabolism is different (as all the meds you take with little side effect prove). Perhaps you have a very fast metabolism and those drugs just go through you too fast to be absorbed?

It really is strange you take all of those meds whose side effect is sleepiness and you can't sleep. Do you get the benefit from them? If you are getting the benefit w/o the side effects I think that's great. Of course, if you are tired, that's a different problem.

If you are still tired, have you tried a sleep study? You can usually find one somewhere in your area and perhaps they can help you.

Good luck and hope you get some good sleep soon.

Barb





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