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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi Jules and Diedre and welcome to the boards!

Sorry that both of you have RSD and wc. It's a double whammy. :rolleyes: Yes you better fasten your seatbelts, because you are about to go on one wild rollar coaster ride that never ends:dizzy: ,been there done that. I have RSD in my upper left extremity form a wc accident in 1999, and closed my case 1/1/2004. Jules have you applied for ssdi? If not I would do so asap. You've been off work for 6 months, and that's the waiting period window before you can. A lawyer is a necessary evil, and the sooner thge better. Also keep track of your mileage to and and from dr's. You are entitled a monthly reimbursement for that. Being disabled is a full time job. Sorry to hear about the lyrica, but neurontin is worse. I nicknamed the drug, NeROTTEN, and there is no medical proof that it helps RSD. Ususally the dr's want to prescribe that instead of more pain meds. That drug made me so tired, ditzy, literally walked into more walls, and then I couldn't even drive. I had trouble concentrating, couldn't remember where I was going or what I was doing or saying.:dizzy: Even got into a car wreck on it, and the cops thought I was drunk, casue my words were slurred! Do you have any of these symptoms??

I've never had a sympathectomy, but I've had 3d bone phase,--negative--to EMG's, the first negative, the second positive for RSD, numerous MRI's, cortizone and lidocaine injections, accupuncture, massage and physical therapy, 2 nerve blocks, and way too many meds to mention. These tests, can prove or not prove you have RSD, doesn't mean that you don't. The best is to find a dr. who is understanding and knowledgeable to treat this monster. Having a good phscologist who deals with people with chronic pain helps too. Any dr. who tells you these symptoms are "in your head", run, don't walk, out of their office. Acceptance is also a big key here. It's half the battle. I just wanted to say welcome, and to let you know there is a great support system here. Aloha Skooze:)
Hi Szooze,

If you don't mind can I ask you some questions since I don't know anyone w/ RSD and I would like to find someone in common w/ me.
I have more swelling in my hand/arm when I stand or sit do you have anything like that?
My pain sometimes changes I have aching in my joints esp. when I swell up real bad, burning pain that runs down my arm, sharp pain in my back, my R hand is useless the muscles spasm are horrible, and the deep burning itchyness.
Also I think its moving into my other hand but my PM thinks that is just an internet myth.
I have only been taking Neroutin for about a week so I don't have any of your symptoms that your describing. How long did you take it before you had those side effects?
Thank you so much for sharing I really need to hear other peoples stories.:angel:

I hope I spelled this correctly... you have more than a friend on this board. As with most of the others on this we suufer with RSD/CRPS. Many are results of work accidents and depending on which stae you live in the w/c laws vary. I was injured in 2002 at work and have been on and off work several times. Right now I am finishing a long day here and live as do everyone else in pain. I just had a SCS (spinal cord stimulator) installed. It helps to some degree but I think the one I had installed may be defective as it overheats when I charge it... Kind of weird when I have it plugged in to the outlet or extra battery charger and my skin heats up. As for the swelling it is common...Just a quick note there over 121 symptoms for RSD/CRPS. Not everyone has the same systems or degrees of them. However that being said...welcome to your venting outlet... Were all here to listen and hold you up in prayers and share our expierences...Or just listen.... But we always pray for you... anyway... keep the faith...God bless... Bernie Aloha Skooze and Sharon... it is getting tough to type...i think I'm dyslexic cuz I keep having to retype the words...Chow for now...<><:blob_fire
Hi everyone:wave:

Gosh where do I start. . . The typing first hit me. I wonder if dsylexic and RSD go hand in hand?? :confused: I always have to reread what I type or no one would ever know what the heck I was talking about. It's good to hear from you Bernie again! I never knew that there were 121 symptoms of RSD! No wonder docors' can't properly dx us right the first time. Is it being all in you head one them? lol,. I'm getting silly now. :jester:

Jules in answer to your question about the swelling, to me it's worse when sitting or standing up. That's when we tend to do more things. The pain you desribe is very similar to mine. I hope you are on a muscle relaxer!!! That is amust to control the spasms. They upped my dosage to 1800 mg of NeRotten aday, after about 1 month. That's when all the symptoms started hitting me. I had a tape recorder hooked up to my phone, so when I called my attorney etc, I could replay it because it was easier than taking notes. I listened to those tapes recently and I did sound drunk. And all of my friends noticed the change in me when I quit taking it. They said they didn't think I was going to make it. Now how scary is that??? Do a search on Phizer and $403 million dollar fine, and see how they promoted that drug for off label use. It's only supposed to be prescribed for people with shingles or in co junction with seizures. Have you applied for social security yet? RSD can spread--to the other arm, to the one or the other feet. Mine has spread to my left leg first then the other arm. And it's trying hard to get in my right leg.

Robbin you hit the nail right on the head when you said that you have No say or control in your health. All the more reason to close the case. Don't feel bad, I was on ice too. I wonder why it melted so fast:rolleyes: duh. It felt good at the time though. I wasn't dx'd with RSD until after my neck surgery in 12/01, but all my dr's suspected I had it. It was my physical therapist(yes the one who used to put ice on me!) told my neuro after the surgery how I would soak the sheets with just gentle manipulation. That's when all my 121 symptoms started clicking into me.

Deidre, I too have a 14 year old. What is EIS? Maybe I'[m tired, because I'm starting to get goofy. But I wouldn't put off the pyschologist. WC will pay for one. They ought to after it's all in our heads anyways. Mine helped me soo much. I could vent with him, and he helped me with my kids, my doctors, my attorney. They can give great advice and teach relaxation methods. Make sure you get one who deals with chronic pain. It will defitenly make your case look better when you close it. Ask Sharon, whose from New York about a a RSD attorney. But be careful before you switch, because you will still owe the first attorney "X" amount of $$ when you close your case. I've see people get burned by this. It's also a good idea to keep a journal, of when you call your attorney and how much time you talked to them. I didn't, and when I saw his fabricated bill, I could have screamed. 10 minute phone calls were billed for 1 hour. Hey I had the tapes. But I just wanted out. Good luck.

Well my hands are giviong out on me. So it's good nite and I hope everone has a better tommorw. Aloha Skoooooooze. is gonna snooooooooooze. :jester:
Hi Everyone,

Well I have had some ruff days but today is so-so. Hope everyone is having good days.

As for Robbin did you want to go through w/ the RFS? As for the SCS I know someone who got that she went to my pt clinic and she says that it has worked for her and her pain averages a 5 instead of a 10. And I know about the stupid wait you would think they would want us to get better so there $$
amount per patients would not be outrages because I've heard that the wait is what makes this thing worse. But my adjuster is incompetent and that is being nice I really think if I was as bad at my job as she is at hers I would have been fired. But to them she is probable good at what she does.

Skooze I am not on muscle relaxer what do you take? And no I have not filed for SS why is it important I thought you did that afterward when everything is done/finished. How do I go about that?

Bernie I too would love to know where to read about the 121 symptoms where can we find it??????

Diedre my attorney for w/c specializes in RSD I think its best because they understand what your going thru and will represent you. Als what is EIS???

Best wishes everyone!!!!!!!!!!!!!!!!:wave:

Hi Jules!

You need to call social security or apply online. There is a 6 month waiting period, of not working, before you are eligible. That's why I brought this up. Do this asap because it could take a while before you get any disability checks. But it is retro from the day you apply. So online might be quicker. You can collect ssdi and wc payments, although your ssdi payments will be off set by your wc payments. If you have kids, they each will get a payment as well.

I take soma 359 mg 3 times a day. But there is flexeril, along with others to control those nasty spasms. They are a must with RSD. I* too want to know about the 121 symptoms of RSD!! I'm happy you got an attorney that specializes in RSD. If social security turns you down the first time, ask your attorney for a lawyer referral. I'm surprised they never told to you apply. The last thing we need to stress over is $$$. Have a good evening Aloha Skooze:)

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