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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi guys,

I havent posted in a few days, thats because after a month of the Lyrica (that was such a miracle for me) I began to have HORRIBLE side affects. I got up..or I shall say attempted to get up one morning and couldnt move...litterally so stiff...my joints...every single one of them we so stiff it felt as though i were 140 yrs old. Maybe as if I had developed stage 10 arthritis over night. Well, I wasnt sure what it was...so me being me,...I let it go for a couple days...it got worse and worse..finally I called my PMD..she looked it up...and to our surprise...its a side affect of Lyrica...rare..nonetheless a side affect. Its called something like arthromo *** something...i cant remember what she called it...but anyway..she said she would have to cut the lyrica back to see if that helped...I lowered my dose for 2 days...and waaa laaaa...felt better...still stiff and sore...but nothing like I was...so as I finish the lowing to come off Lyrica I will feel like myself again.
How disappointing is this? Such a wonderful drug with such positive results with the one type of pain that us RSDers suffer with and a side affect so horrible there is no way you can overlook it or live with it. At 41 when you cant climb 4 stairs (and your RSD is in your arm) thats bad!!
I just wanted to share my experience with you all...I know almost everyone has started on Lyrica...I think I was the first to start...the side affect took almost a month to show up...if any of you start to feel stiff at all..please immediatley contact your doc...its not something you want to wait like I did and not be able to get around. There really isnt any info out on this drug so we can read much on it...just sharing my personal experience.
I pray for another drug to be made to help with this ( I think Ive tried them all) and for those of you who can take it...your so lucky...just be careful and beware of the side affect i mentioned...Claire :rolleyes:
Oh Claire how horrible for you! :eek:
I remember posting a thread and asking about this versus the NeROTTON, and you replied saying it was better and made by the same company as Neurontin. Pfizer Company--who got slapped with the 2nd biggest fine by the FDA last year for promoting Neurontin for off label uses, and yes RSD was one of them. The drug was only meant to be for people with epilepsy and shingles if it was taken in co-junction with another seizure med. Gosh I'm so glad I tuned into tonight, cause I have an appt. with my dr. tommorrow for it. I had such high hopes. I'm so sorry that you had to be the first. :( I hope it's long term hangover isn't as long as it was NeROTTEN! Dang >>it just confirms another defeat for us RSD'rs that there is no magic pill to make it go away. Thanks for alerting us right away so others who were thinking about trying it may think twice. Was the side effect something to do with arthritis? How many mg. where you on a day? And you said after 2 days you could feel some relief?
I remember asking my daughter's dr. and he said that he was prescribing it to people with diabetic pain, and epilepsy. I pray that you get it out of your system. One month isn't that long. Better than a year or 2 of Neurontin! :eek: Thanks for managing the strength to alert us all. Take Care--Aloha Skooze
Hi Skooze,
The funny thing is I dont have arthritis, never did...I was started on 75 mg twice a day and after a week increased to 150 mg twice a day, I tolerated that for almost 3 weeks before the side affects I previously described showed up. And you are right, unfortunately there is no magic pill out there for us RSDers, however, this seemed to be the most promising yet. It is also a epileptic..anti seziere as well, but as my Dr described it works directly in the spinal colemn and thats what sets it apart from neurontin.
The really strange thing is is that there isnt even a history of arthritis in my family, and my Dr said it has nothing to do with it...even if I currently had arthritis....its just a side affect of the Lyrica unfortunately :eek: ...I hope if anyone else that has started or is thinking about starting this drug...they really are aware of this. I have a very high tolerance for pain and am on 90 mg of oxycontin a day with percocet for breakthrough pain...and even with all those narcotics in my system..i still couldnt get my legs to move without literally bringing tears to my eyes. Its certainly nothing to play around with, nor is it something that will go away in time like the "ditzy" feeling did...believe me...I waited it out to see, and suffered immensely because of it. I hope this saves someone from additional unneeded pain. Claire
Hi - my doctor is going to get me a sample of Lycria to see how I react. Could you please tell me how much you were on. I seem to be very drug tolarant but will start as a very low dosage and see if that does some good. Only on 900 neurontin with 3 mg of Clonmazepam. He would like to see if he can get me off both of those. Laura.
Hi Claire--I'm happy to see you made it through another day. I'm just wondering about the arthritis part? :confused: Does this men now that you have arthritis in your legs now in additon to the RSD? And on the side effect sheet it listede arthritis as a adverse reaction? And you're doctor told you it worked in the spinal column as opposed to Neurontin. I guess I don't know much about arthritis, except for the ads of old people having it and taking asprin. I mean in away RSD is similar to RSD, because our movements are jerky and painful, and we tend to hold the affected limb in a fixed position. I didnt even know arthriits is inherited! :eek: I know RSD can be inherited. I worry about my kids maybe could get it, because both are hypoglycemic like me.
It blows my mind and makes me wonder about these new meds and how long they try them out. It's bad enough having RSD but to have arthritis on top of it in your legs too? Mine is in my upper left extremity, and every day it feels like I'm 80 years old, especially on waking. I'm on 160 mg. of MSCotin with percocets for break through. I'm glad that you did warn others about it. :angel: Although every body tollerates meds differently. Some people do well on the neurontin. Very few but some. I'm just glad you found out in time, and I pray that you don't have any ill long-term side effects from this. You are in my prayers. Aloha Skooze
HI skooze, When I recieved the Lyrica from the pharmacy, it was so new..the pharmacy had no printed information on it at all that came with it. It is now Saturday and I am off the med..I would thnk it is out of my system by now,\, but my joints are stilll VERY painful. I hope to god I dont have arthritis on top of RSD...my RSD is in my upper left extemity as well. Its bad enough dealing with this spreading up and down my arm....now I have trouble walking as well? It almost seems bizarre that this med would cause a permenant condition but Im supposed to call my Dr on monday to let her know how things are going. I will post more after I talk to her...Claire
Aloha Claire! Sorry to see you in so much pain :o My RSD at one point spread to my lower left leg where I cringed when I had to walk. And the cold weather made it even worse. I started walking on the right foot to compensate, and then that leg went numb. They both do, still occasionally, especially when I have to go to the bathroom in the middle of the night. My daughter has found me many a times not able to move. Now I have my cane beside my bed, so I don't have to wake her. It will be interesting to see what your doctor has to say on Monday. Have you tried going to the Pfizer website to see what the side effects are? I was so gung ho on this idea, that I haven't even checked this out. You saved me from getting that script! :angel:
I hope it makes others to realize that it's not cracked up to what it is supposed to be. Has anything else changed since you started taking this? Increased sweating or lack of sleep, depression, radical temperature changes or more swelling especially in the lower extremity? Are you taking any herbal supplements? I tell my doctor of any supplements that I take, to get a perspective if they are a waste or not. I recently started Graviola and I seam to be more perky and move more easily. The downsize is I tend to overdue it, and come home exhaused. Or maybe it was the gas price that went up to $4 a gallon here, and I combined all my trips into one day. It takes me 2 days to recoup after that! :confused:
Anyhow I would think that a drug would stay in your system for at least a week more, even though you've been only on it one month! Drink lots of water to try and flush it out. You are in my prayers deat, and hang in there. Aloha Skooze :)
H Claire--I just did some research on this. It says that you should not take this drug if you are taking any narcotics (such as oxycodone) tranquilizers, or mediicine for anxiety. You may have a higher chance for dizziness & sleepiness. Well I just flunked 2 out of 3 on the med test.
If you take too much--go to the nearest ER room :eek: I have never seen this on any drug precaution sheet! Crazy. Side effects are blurred vision, weight gain, (edema) unexplained muscle problems, such as pain, soreness or weakness. Hello sounds like what you think is arthritis or still could be.Can make you feel HIGH :dizzy: especially if you have abused pain meds or alcohol in the past, Thye really don't advertise it for other nerve pain, They are being very cautious, probably due to the last fine of $43K by the FDA. :nono:
Hope this helps answer other's questions or concerns. I mean how many of RSD'ers take some form of oxycodone for pain? Duh! And to think that we've abused it in the past I guess it is trying to define what abuse it to cover their you-know- what. Let's see-- I"ve had RSD for 7 years and have been on some form of oxycodone for that time. And to anormal person--is this considered abuse? The part that really got me was if you take too much (Lyrica) go to the nearest ER room. :eek: I must admit that I have never seen that precaution on any drug that I've ever taken. I can just see the skull bone pink warning label on the bottle, along with all the other warnings! Too much!
Hope this helps all out there. Any more stories that need to be told, I'm all ears.
Aloha Skooze
Skooze,
Where did you read this information? It appears that many of us, if not all use some form of oxycodone. This kind of makes sense now, I have stopped taking the Lyrica and no more little green men (halucinations,lol) and no more pounding heart, etc... What will they come up with next for us to be guinnea pigs for??? I will probably try it ya never know what will work... Anyway hope your day is as pain free as possible..Aloha...Bernie
Bernie...The info is on the website for the maker of the drug...pfizer..or it is also on the Lyrica's own site...Im surprised this late in the game..since its been out a little over a month that it didnt come with that info printed from the pharmacy, since the info is readily available on the site. When I first started on Lyrica there wasnt even a site yet nor was there any info printed from the pharmacy..just a blank page where all info usually is. Check out the site as it also does list a rapid heart rate as a possible side affect as well....Claire
:wave:
You have got to be kidding me here! :o
Just when you think that there might be something better than that stupid Neurontin...yikes!
No wonder my team of Dr.'s was not anxious to give it to me.
I guess I'm better off that a lot of RSD'ers...I'm totally off of the Oxycotin and the only thing I use now is the Neurontin...of course for the break through pain I have the Vicodin.
Wow...When I start mine (the L. drug!) I will only be on 2 N.'s a day..one in the am. one in the late afternoon and the L. at bedtime..then they will see how I do..Now, of course I am a bit apprehensive of it all...Just happy to be out of my wheel-chair and where I go from this will be only better than were I was.
I just love this board and how much care and love there seems to be given to all of us.
Thank you so much for all your help and for the sharing of your own trials with RSD..
Have a blessed week.
Hubbard
<><
:angel:
Well I talked to my Dr this morning about the still increased joint pain....she said she thinks it will still take another week or so to get it out of my system :rolleyes: Not to be the bearer of bad news or anything but.....as it said on the website...and i think skooze mentioned it too...swelling of the limbs...well.........my hands and feet are soooooooooo swollen today its pathetic. My Dr wants me to come in on Wednesday to see if we can figure out another plan . And just to let you know...swelling of the limbs is also another lovely side affect of Lyrica. I have marks where my socks have been and my non RSD arm is swollen...BUT my RSD arm is SWOLLEN...so swollen in fact i cant close my hand all the way (that may be a little swollen dont ya think? LOL) Im not sure it was worth all this ugliness :nono: Well the other awesome news...I also had an issue with my Rt ulnar nerve too....but my left arm got worse first so thats the one I had surgery on..(and got the RSD from) and you guessed it!! my right arm is flareddddddddd up too now. My Dr thinks that the lyrica started it and since my RSD arm has been so painful...its been my sole use almost...so now I dunno whats gonna happen with what used to be my good arm :rolleyes: . All this because a new drug all the Docs were so excited about. If you read all the literature tho...it does sound very promising.
I also asked her how come I can be in so much pain with my joints with all the pain meds I take and she said its because its a side affect...and side affect pain like that isnt the same...so its not treatable with narcotics...makes sense tho..how else would you know you had that kind of side affect if it was masked by the narcotics we take?....Hoping others do better than I did with the wonder drug....Claire
cblas,
Are you taking medications for diabetes?
No Im not taking any meds for diabetes, thank god I dont have that too. Hang in there...things keep popping up by the week, so you never know...check in with me next week and Ill let ya know hahaha...Claire
Hey skooze...Just an update on the feeble bones..lol. I went back to my PMD today for a follow up to figure out a new plan, it turns out in the meantime she had consulted with some other Dr's who also have been prescribing Lyrica and they all seem to be agreeing that maybe the dosing was increased more than my body could handle (although i wasnt started on nor increased more than any other patient). They all seem to think that because it had such positive benefits for me in the beginning, that maybe we should give it another try! :rolleyes: Well...out of desperation, Im willing to try anything to be quite honest. So here is the plan, in 2 weeks, when all the Lyrica is out of my system I will start on 25 mgs twice a day for 2 weeks and then every 2 weeks she will increase it by 25 mgs to make sure my body has time to adjust to the medication. If the feebleness even starts to come back...we will stop immediately and try something else. I normally wouldnt try something again once i had such a horrid thing happen, but it was such a help for the burning and as you know...there isnt much else out there that is...so again, desperation takes over. She also increased my pain med :bouncing: which was desperately needed as well. I will let ya know how things progress this way..I sure hope it doesnt do that again!! The head Dr that ran the seminar my Dr attended said although it is a listed side affect....out of all the people that have been put on Lyrica since it came out (she said there has been tonssss) that noone has reported this side affect. Leave it to me...hahahaha. But then again..maybe they are right and it was a dosing issue and I will be ok this time around..I sure hope so. Wish me luck this trip....Claire
[COLOR=Red]lyrica[/COLOR][COLOR=Red]rsd[/COLOR][COLOR=Red]heart problems[/COLOR] :wave: hi claire, iam so sorry for what you have gone through with this drug lyrica,it all sounded so promising in the beginning , i truly am very upset about what it has done to you . today i had an app. with my fm dr. because i was one of many that were waiting for samples of lyrica to try .my dr and i had a very good conversation concerning lyrica and he did have the samples ,but we both agreed that i should not take lyrica . he is going to a conference on this drug this wk. to find out all the info that he can get .his main concern with me taking it is what lyrica could do to the heart, and since i have had 3 heart attacks long before i was dx. with rsd . i was put on nerontin when i was first dx.with rsd and i had to be taken off of it ,couldn't handle the side affects,he also said that because lyrica is made by the same company it is a sister drug to lyrica , hope i am making some sense here as iam having a very bad day and my rsd is also in my left arm ,also i know that rsd causes osteoporois and i already was dx with this 2 yrs ago. not only would i not take it because of my heart problems i am teriffied of what it would do with already having osteo,due to what you said it did to your bones :nono: i have so many other health problems my dr has to be very careful, on the 24 of nov i am scheduled for surgery, this will be my 2nd bypass to fix my legs so that i will be able to walk properly without my cane or walker and iam a basket case right now worrying about the rsd spreading. well enough about my problems i truly hope that you get over this very bad setback :eek: you must be a very strong person to give it another try and i hope that you have much better resulsts this time around wishing you all the best,and i will be praying for you that your pain gets better as the days go by and it is right out of your system also drinking lots of water is a good way of flushing it out. thank s so much for warning all of us about this so called miracle drug :rolleyes: keep us all posted on how you are doing again many thanks from all of us sandy chick 58 :angel:
hey chick..good to hear from ya...havent seen you around much lately. Yea lyrica is made my the same company however it works in a totally different way than nuerontin. Lyrica works directly on the spinal column, whereas neurontin doesnt. Having heart issues like yourself, Im not sure Id try lyrica either. There really arent supposed to be that many side affects and the one I had is rare. I will try it agian..call me crazy but I did find relief from it when i didnt feel 182yrs old haha. I will hopefully get the same results the second time around minus the ancient joints. If I do, then i will stop it and not ever try new drugs again. I have so much faith in my Dr that if she feels that may have been why..I will trust her. I know she wouldnt give me another shot at it if she thought it would happen again (she felt horrible this time). Ill keep ya posted and let ya know how things go....Claire
:wave: Hi everyone-- Sorry I haven't been around much, my daughter and her boyfriend who just started a drywall job here that pays $18 an hour cash, and needs a ride to work and back everyday :eek: But I know in 2 weeks that they will have enough $$ to get their own place, and I just bought them a car yesterday. Too bad neither has a licence because it take an act of Congress to get a road test here--but that's another story.

Wow Claire--you have been put thru the ringer here. I gotta give you credit for trying it again. It's interesting what other's too have posted. Thumbs up for everyone else's input. :) I was at my daughter's dr. today, because my youngest has a cold now, and he was the one that told me that he's prescribed it to people with diabetic pain and shingles. He's also the head of the largest clinic on this side of the island. When he was done with her, I mentioned the Lyrica and the results it has had on the RSD chat board I'm on. He said that that would make sense, & if I wasn't so dang tired I'd remember wha t he said. He did examine me cause I twisted my neck this morning blow drying my hair. And when he put his hands on my neck at C6 ligjhty I screamed so loud, I think everyone heard me. Maybe then it was when he said that I wouldn't be a good canditate for it. Of course he told me to go home and put on ice on it--where I said no ice with RSD--and he corrected himself.
Anyways about Pfizer--I agree with Chick 58 about them coming up with a substitute drug for Neurontin! I read part of the PDF format of how the drug combines with molecules in your body, and it reminded me of Neurontin dressed up for Halloween! They mADE SO MUCH MONEY for prescribing it for off label uses! I even called Pfizer one day after the lawsuit, and I have a tape recorder hooked up to my phone, and they told me flat out it was not approved for RSD!!!!!! Then why was I pushed into taking it? And my crooked ortho who gave it to me, his office was shut down for 2 weeks at the last minute because he was on a Pfizer Drug Seminar for and never bothered to call anyone to cancel :o Hubbard maybe why that is you're so tired! I didn't know you were on that drug. I got in my first car accident on that drug and they thought I was drunk! Sorry but it just gets me upset about the drug compamies and all the money they got to advertise these new drugs and yet they cost us sooo much-- not only in the pocket but in the body too, because they haven't been on the market for that long. They don't know about the drug interactions with the heart, like Vioxx, and when they say do not take this drug if you are taking a drug with oxyodone, that could be percocets or oxycotin, or codenine. :nono: And the swelling??? I just wonder how long this drug was tested and if the FDA is being paid off too! I wish like I've said before--I wish that there was a magic pill for us RSD'rs. I know how desperate we all get to try anything to stop the symptoms with the pain!. But we have to stop and think of the long term damage it can do. We already have pain on a scale on 1 to 10 a 50! and the last thing we need to do is take something that down the road could cause us more harm them good at the drug companies profit. :blob_fire :mad:
Think of the FDA as FEMA! It's the government.

Please Claire be careful. Maybe a low dose might work. But you got so many problems with swelling right now, you're reintroducing something that caused you great harm. I pray that you know what you're doing. I just wonder if anyone else is taking the same dose as you? Weren't you up to like 75 mg a dose? Keep us posted on how you're doing. If it continues to cause the swelling stop. No need to wake up like you feel you're 182 when we all wake up feeling like a Mack truck ran us over.
Thanks for everyone hear me vent. My neck I can't turn, and so I'm gonna rreat myself to a glass of wine with my dinner, and hope that helps. Aloha to all Skooze
Hey Skooze,
Call me brave for trying it again.....my family calls me stupid for considering the thought. I have been totally off the Lyrica for almost a week now and I still have swelling and very painful joints. Granted...not as bad as I did, but there nonetheless. Im starting to reconsider the thought of giving it a second try. Im not sure how long this takes to get out of my system...or how long my joints will still hurt...but at this feeling..one more day is too long. It is truley awful. I'm supposed to start the 25mg twice a day dose in a week and a half..not sure if Im going to. It really depends on how much longer this lasts. Im not sure that all the swelling that I have as well isnt something that is going to come back as well...if its the medicine...its the medicine...right? if it causes swelling and painful joints...it does...right? Im not so sure I agree with the reasoning behind that, after all, Im the one that retains the water and cant walk...I just wonder if they are looking to see what will happen kinda thing...isnt that a bad thought? I love my Dr but she is going on the advise of someone who doesnt know and care about me...and Im not sure I like that. I have alot to think about in the next week...I want to talk to my Dr some more and decide what Im going to do...Ill keep ya posted...Claire
[COLOR=RoyalBlue]Evening all, or should say Good Morning? :wave:
I can't tell you how glad I am that I found this board..
Even though we each have different areas that are effected with this RSD/CRPS and different pain levels...we are none the less in the same boat.
We can learn from each other and that is so good, at least for me it is.
When I read what some of you fine folks have been through,well, it makes mine look like a walk in the park.
I've only had this new addition to our family for 22 months and right now my daily pain level doesn't seem to go above a FIVE! It has been so much worse but right now it stays at about an 2! That is a good thing indeed.
I do find myself playing Dr.! Don't we all.
Last Easter while I was visiting friends I decided I would go off all my meds. NOT WISE! :nono:
By the fourth day I was a real mess...But, did I learn a lesson? NO!
I am playing Dr. right now..
I'm suppose to be taking my 800MG's of Neurontin FIVE times a day...but like I have said before, I was so tired all the time I decided to cut back a little at a time..Now, I'm down to 3 a day with the 800 MG.'s!
Off the Oxycotin altogether and don't ever want to see that little pill again..not even sure that it helped me that much. :o
For my pain, when it gets to at least a 4 or 5, then I take the Vicodin.
Right now I am researching, like I know you all have done, to see if there are herbs and vitamins that I can take to help me.
I know there is no cure for this.. :confused:
When my physical therapist had his heart to heart with me 20 months ago, it was he that made me see that I might have this the rest of my life..
I'll never forget that day..there I sat up on his table and he was asking me "where do you see yourself 6 months from now?" I just looked at him..I said, "well, maybe the same way I am now????" He said..."And a year from now?" and "2 years from now?" and "Perhaps till the day you die?"...with that I burst into tears...He was so kind and great with me.. :angel:
But, I know he had to make me see this for what it is...a new member of our family..!!!
So, when I read the things most of you have had to suffer and how long you have had this..
I count myself blessed to be in the state I am! :)
What a great bunch of folks you are and how kind you are to share the deepest parts of yourself! :)
I pray that each of you will find peace and have some pain free days or at least moments!
I am learning to really rest in those moments when they come and be thankful.
Have a great week-end.. :jester:
Thanks for letting me post this long letter...and thanks so much for all your help with my questions...Please forgive my grammatical and spelling errors.
Hubbardsfarm
<><
:angel: [/COLOR]
Aloha Claire & All :wave: I would say being a woman that you should stick to your intuition. I wish I would have follwed that advice and it would of saved me alot of meeting the Mr. Wrongs.Whenever that intuition talks to you you should follow it. Call youbrave--no I call you desperate. We've all been there at some point where we would try anything ( except maybe drink squirrell pee as someone else suggested LOL) :D but I would listen to that inner voice. You still have SOME swelling as opposed to a FEEL LIKE I"M 180 years old when I wake up. Boy that sure beats the record of the pain scale on a 1 to 10 how do you feel :jester: Maybe they should ask us RSD'rs how old do we feel today?? I never felt that old, but I used to ask my kids if they got the # of the mack truck that was driving and ran me off the road!'

How old are you, may I ask? And the swelling is it like pre-menstrual or it's all in your foot? If it;'s all in your feet, which isn't t he origin of the RSD I'd be real leary of retrying it again. Try some herbal supplements or something that didn't nearly put you back 4 squares from where you were before you started again. I truly emphasize with what you are going through, but being desperate, vs beeing logical, I think you're confused.

My girlfriend who has been taking treatments on my STS machine, tells me that she paid to see a Rheumaoid Therapist, because there is only one on this island Of Maui, and he is not HMSA approved but Kaiser. She went in, and this guy told her, that she has rheumetoid arthritis vs RSD, which makes sense cause she doesn't have the same symptoms as us. Same shoulder/neck injury, but different symptoms. He also told her, cause she mentioned me with RSD, that when you see a pain magt. dr., you should ask if he is a member of the American Pain Mgt. Association. Supposedily, these dr's have the most curent knowledge of RSD and other chronic pain that we see here. He also told her for me, that I should take Cymbalta for the nerve pain. Desperate for that magic pill I researched it, it sounds alot like lot he Neurontin, Lyrica etc. It's an anti- depressant used for treating once again, diabetic neuropathy, and shingles. It's side effets are more similar to NeROTTON than Lyrica :eek: Lily is the manufacturer, and there have been alot of suicides over this and the side effects are horrible.
I just pray Claire that you, realize when to throw in the towel. I'd rather be a functioning person than a vegetable. No one said that YOU HAVE TO BE THE HERO! I just worry for you, and I know that time tells all. Just keep us all posted DAILY. Then your support group groupies can guide you through this. Pinky swear?? ;)

PS Hubbard that was a great encouraging post! :bouncing: I think that the NERoTTEN is making you tired, and that OXY is the wrong drug for us.
Anytime that the drug companies gives us the bad drugs for free, like OXY and NeROTTEN, yet we have to pay for the good ones like MSCottin which is a more safer drug, but extended pain relief vs. short term relief. I take Graviola and Noni juice for herbal supplements, and in one month I have been taking less narcotics. In fact I could do away with my break thorugh pain, except the quick acting perc I need in the :) morning. Baby steps though. We all have to remember baby steps. Look how long it took us to get where we are vs where we wanna be. My computer is freezing up on me so it's time to say good night, or Aloha same thing Take Care ALOHA SKOOZE :angel:
[COLOR=RoyalBlue]Hi Hubbard,

That was a very nice, thoughtful post!

Sharon :)[/COLOR]
Hi Skooze,
And yes, you may ask...Im 41 and no the swelling isnt pre-menstral or anything like that either. It is in my legs (lower half of my calfs) and my RSD is in the upper left extremity. The swelling is improving everyday..and thats a good thing. Thats what bothers me about this whole reaction....the swelling. For some reason, it is making me retain fluid and that bothers me....I dont need any heart issues to add to my list. I have thought and thought and I think Im going to pass on the Lyrica retrial...regardless of what they say. If the medication makes me retain fluid...THAT doesnt have anything to do with the dosing....that just means that my body can ttolerate the med...and for that reason alone I have opted not to try it again.
I have also tried Cymbalta...BAD BAD BAD for me also. I was taken off that as well because of side affects and I think too that is alot like the neurontin and lyrica too. I was taken off neurontin also becuase of side affects as well..I seem to be very sensitive to medication...and the rarer the side affect...the more chances that I will get it it seems... :rolleyes:
You talk about oxycontin skooze...saying that you didnt think that was the drug for us either...I take oxycontin and that is one of the very few drugs that I havent had any issues with. I was on methadone and morphine as well...and yet again...side affects did me in :rolleyes: I was just curious why you say that....I know that a few people take it..and I do know that it hasnt been negative for me in the least.....I still am very very sore in the joints....My Dr said no amount of narcotics will take care of that because its a side affect...it just has to get out of my system...and I hope its fast, Ive been drinking alot of water in hopes it hurrys it along. I would like to check into some supplements..but dont know where to start...any help on that?...Claire
[COLOR=Indigo] :wave:

Good Morning all, from the Motor City....
What a wild week-end we had here, with all the rain and wind.
But, I count again my blessings that we are not like the poor folks who were hit by the Tornado Sunday Morning..how divesting for them. :(
Can you begin to imagine what it must be like to lose a family member or friend so suddenly and then on top of that to have lost all your possessions?
I can't! So, when I was in pain yesterday all I could think of really was the pain these people were feeling and how I was so much better off than they are right now!
It's always easy, if we try, to find someone who is worse off than we are and that is now I try to cope with my pain.
Now, if I can get some energy going here, I will be so much better.
I am going to try the Graviola and Noni juice Skoose...when my hubby gets back into town and can get it for me...at this point I would stand on my head (if I could) it someone told me that would help...Where do you get your GRAVIOLA? I did some research on it and there seems to be a lot of web sites that sell it..from the low $ to the very high$$$$$! Which is best?
Now, for the OXYCOTIN (Claire)...I took it for over 18 months and the only thing I know was that I didn't feel it worked...I went off of it because I feared becoming addicted to it!
I can't say that I feel any different being off of it...my pain level is the same with or with out it at this point!
Last year this time I had a catheter in my right leg for 3 weeks, that was suppose to help with the pain and make me able to be in PT! Well, it made me unable to walk without assistants! My leg would go completely numb with no warning..then I would fall on my face..Not cute...
That's when the team of Dr.'s decided that I was a good candidate for the SCS..
They did one, never could get the coverage they wanted for the whole right foot..So, we waited for the new one to come out and tried it...as I posted in an earlier post, that didn't work either...reason given...sometimes when you have RSD in the lower extremities, it just can't get that covered! So, what is the point in having this implanted if you can only get half the coverage? NONE! That was the decision by the team of Dr.'s and the people from Merck...SO, they took it out.. :eek:
This is what I now believe...when they were in my spine with all those tiny wires, trying to find the right spot to place it for compete coverage...I think when they took the wires out they touched part of the "Sympathetic Nerves." In doing that..(now mind you this is just my opinion!) I think it was like a "Restart Button" (if you know what that is)....In doing that, my pain level started to go down slowly...and over this past summer it went from a daily average of 7-8 down to about 5...by the end of the summer it was down to about a 4 and right now my daily average (when I'm not over doing it!) stays right around a 1-2! That is not a bad thing...
So, why should I complain about being tired when I have so little pain?
If I could get rid of the extra 80 or so pounds that I have gained over this, that would be a good thing too! How can you shed pounds when you can't do enough exercise to burn the calories you take in? Anyone with a suggestion on that? I am open to just about anything at this point..
While I know that there are always new medical discoveries going on, I don't really think that RSD/CRPS is one of the top areas of research! Perhaps I am wrong, I hope I am..
My heart goes out to each of you and I do pray that you will find peace in this medical problem we all have and that you will have some moments that are pain free.. :bouncing:
Have a wonderful day in the knowledge that someone is thinking about you and praying.
Hubbardsfarm
<><

:angel: [/COLOR]
[COLOR=RoyalBlue]Hi Hubbard,

I've lost about 40 pounds in the past year or so. I did it with diet alone...no exercise. Because I have Type 1 diabetes, I have a little added incentive that people who don't have diabetes don't have, but it is possible. I did it predominantly through counting carbs and keeping them to a minimum, but not too low (I don't believe in that either). I eat about 120 grams of carbs per day. If you have any questions, let me know and I'll try to help you out.

Sharon :)[/COLOR]
:wave:

[COLOR=Blue]Sharon,
Bless your heart for taking the time to write about your weight loss!
WOW.. :D
I would love to know more about how you did that with out exercising!
All I want to do is eat and sleep! :nono:
I am open to any help you might be able to give me.
Again, thanks so much for caring.
Have a great day..
Hubbardsfarm[/COLOR]
<><

:angel:
[COLOR=RoyalBlue]Hi Hubbard,

Thanks. Any specific questions? I really just told you about it because I wanted you to know it is possible to lose weight without exercising. As I said, I cut out all the bad foods and kept my carbs to around 120 grams. If you have any specific questions, let me know.

Sharon :)[/COLOR]
Aloha To ALL :wave: I have been so busy driving my 2 daughters and her boyfriend to and from work, I'm just exhasuted and missed alll of you guys so much! I kept trying to get online, but after reading my emails I'd be sound asleep at my computer. Not good for a neck and shoulder injury :nono:
I also pulled my neck out of wack blow drying my hair, and had to keep my youngest out of school just to help me see to drive, It still hurts and the pain is going into my shoulder and is on fire and my finger tips are going numb again :rolleyes: Now I know why no one will hire me. No one wants the liability of hiring a person who has nerve damage like us. All you gotta do is move the wrong way and it can flare up your RSD times 10. Even people who hug me comment on how hot my left neck and shoulders are. :eek: I just say welcome to my world. :rolleyes:
Claire I'm glad you warned me about the Cymalta. I swear I could be a dr. or a pharmacist, just by reading these labels and side effects. Tee Hee. Anyhow I'm glad you decided to bypass the Lyrica retrial. Once bitten twice shy. I'm not against Oxycotin, because MS Cotin is it's cousin, I just read about the horrible things of people who abused it and never of the MS Cotin. I wonder if that's because the MS has been out a longer thean the Oxy. I know that I would still be bed ridden if it wasn't for the morpihne. It is the only drug that truley helps me. When I waken I take a percocet cause it is Quick acting, then after it kicks in and I eat, I take the morphine 3 times a day. The Noni juice you can buy at Kmart here. They make it here, and I know the tourists take home cases of this, but I know that you can buy it online. The one made in Hawaii is the best and the most natural. They all taste nasty though. Also the graviola capsules are great from Raintree. Any herbal supplement that boosts the immune system is good. I take Milk thistle too, due to all the drugs that pass through the liver. I wish I had a SCS where the drugs bypass the liver. Another one I haven't tried, but my girlfriend here orders it through the mail, is Mangostein juice, and I see it for sale at Costco too. She swears by it. One should not get to carried away with herbal supplements. I think moving the affected limb, eating healthy, sleeping on a routine, and taking out meds on schedule helps, along with less Stress! I have never gained any weight, in fact I lost weight due to the pain, and my tapeworm that I was born with ;) I could see where it could be a problem though.
I hope you guys all have a safe and cozy night. It's getting cool here, and I love wearing my flannel Pjs. Aloha Skooze





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