[stressedout]

Things seem to be getting worse. I lost my home and 6 dogs in a fire back in May. thank god my kids are ok. since then i know i have been under alot of stress. my rsd hand/arm has slowly been getting worse. the tremor never stops and if i really try to stop it sometimes i can but then it jerks, it get very sweaty too now. swelling gets worse as the day goes on. my dr. wants to do a pulsed radio frequency ablation tuesday. i am just to a point where i don't care anymore as long as there is a chance it will help. now this morning i got up and my fingers won't open.
i have tried but my hand is stuck in a fist. i'm so scared, i thought i was doing good, i go on, don't let on to family how much it hurts. i get depressed because life is normal for them, not me. i feel useless. yes, i favor the arm. i've tried not letting it get me down but now i want to cry. i feel like i am losing it.

[SandyRI]

Do you have a PT? Loretta from this board had the same problem. If you read some of her old posts she discusses the many PT sessions she endured to get her shoulders, arms and hands treated. I believe that one hand is better and the other is somewhat better.

I am so sorry for your pain and that your RSD seems to be getting worse. This change of seasons in the northeast has been the pits this year. But you need to be REALLY careful with RFA. Do a search on this forum and read some of what others have had to say about it. Once you fry your nerve you will never be able to undo it! You NEED a new pain doc that won't try to push a procedure on you that hasn't been recommended for RSD for many years.

I see you are in NJ. I saw Dr. Getson in Marlton, NJ for my RSD and truly loved him. Unlike other PM docs, all he does is RSD. He has many years of experience and really knows his stuff. He is located just off of exit 4 of the Turnpike. His number is 856-983-7246. On Mondays his office does not open until noon. If you are in North Jersey, try Daniel Richman at the Hospital for Spec Surgery or Dr. Ronny Hertz at St. Luke's. (There is a list of ketamine docs on FB at Ketamine Klub with their phone numbers.)

Please don't ever give up!! XOXO Sandy

Originally Posted by stressedout

Things seem to be getting worse. I lost my home and 6 dogs in a fire back in May. thank god my kids are ok. since then i know i have been under alot of stress. my rsd hand/arm has slowly been getting worse. the tremor never stops and if i really try to stop it sometimes i can but then it jerks, it get very sweaty too now. swelling gets worse as the day goes on. my dr. wants to do a pulsed radio frequency ablation tuesday. i am just to a point where i don't care anymore as long as there is a chance it will help. now this morning i got up and my fingers won't open.
i have tried but my hand is stuck in a fist. i'm so scared, i thought i was doing good, i go on, don't let on to family how much it hurts. i get depressed because life is normal for them, not me. i feel useless. yes, i favor the arm. i've tried not letting it get me down but now i want to cry. i feel like i am losing it.

[ali12]

Sorry to hear about everything you are going through right now !

I understand completely how you feel. I have had RSD since I was 12 years old (now nearly 16). Started in my left leg and has since spread to include both arms. When the RSD spread to my right arm in July 2007, I developed Dystonia and got the spasms you mentioned. My arm was locked into a fist constantly for about 3 months. I got very down and withdrawn ... as if it wasnt enough that I couldn't walk, I now couldn't write, life was so unfair!

I know it is SO hard not to lose hope. Many times I have wanted to give up and still do.

The things that helped me when my arm locked into a fist were getting those stress balls and trying to wrap them under any gaps in my fingers I could find. Around the time I developed Dystonia, our beloved dog passed away so my mum got a puppy. Stroking him gently helped to uncurl my hand. My PTs also tried spliting the hand under general anaesthetic but that proved to be unsucessful.

I did try muscle relaxants also so you might want to look into those. Baclofen helped deal with the cramping pain I got a little though didn't help with the spasm.

I'm not going to lie and say I don't have problems with that hand any more, I do but thankfully it isn't locked into a fist permanently. I know how hard it is trying to stay mobile when things hurt so bad and your limbs dont want to move but try and do whatever exercise you can do. Gradually exercise helped with my hand and lessened the spasms.

I hope things start improving for you soon. If you ever want someone to talk to, i'm here

Alison x

[yiisd]

Originally Posted by stressedout

Things seem to be getting worse. I lost my home and 6 dogs in a fire back in May. thank god my kids are ok. since then i know i have been under alot of stress. my rsd hand/arm has slowly been getting worse. the tremor never stops and if i really try to stop it sometimes i can but then it jerks, it get very sweaty too now. swelling gets worse as the day goes on. my dr. wants to do a pulsed radio frequency ablation tuesday. i am just to a point where i don't care anymore as long as there is a chance it will help. now this morning i got up and my fingers won't open.
i have tried but my hand is stuck in a fist. i'm so scared, i thought i was doing good, i go on, don't let on to family how much it hurts. i get depressed because life is normal for them, not me. i feel useless. yes, i favor the arm. i've tried not letting it get me down but now i want to cry. i feel like i am losing it.

So sorry things are going from bad to worse for you, but I also had a hand that froze on my. I could move nothing from ABOVE the WRIST. No fingers, etc. My PM doctor, as far as I am concerned, helped a miracle come along. He did a continuous nerve block (epidural?) while Occupational Therapists MANUALLY moved my fingers, keeping them from remaining in that frozen state. It took two weeks - Inpatient in a Rehab Hospital so they could work 8 hours a day, 7 days per week WHILE I had the needle in my spine controlling what would have been unbearable pain.
I am proud to say that I have about 60% use of my fingers most days. That is a great jump from 0% that I feared I would live with.
Get yourself at least another opinion from a different PM physician. It may mean the difference in regaining the use of your limbs.
Good Luck. Do what you can manually until you find another opinion.

[daniella]

I am really sorry for the loss of your home and pets plus the rsd pain condition. You are in my thoughts and I hope better times are ahead.
I am not familiar with the treatment your doctor wants to do on Tues. When my condition started pre rsd dx I was out in air boot. When I was dx with rsd and pn they had me get out of the boot. Because my foot/ankle had been stuck in one place I lost range of motion and from the pain could not move it. I did go to a pain program at Cleveland Clinic but due to my pain level only made it through a few days. What medications are you on? I did not do this procedure but at the time I could not move very much they wanted to implant a tunneled epidural catheter. I am not sure if there is similar for the arms. Anyhow the reason for this was to give meds and a numbing agent to allow me to go to PT. Then the catheter is taken out and you are to do pt on your own. I am not saying this is the right treatment for you but just some thoughts. Also what about ketamine infusions?I agree about getting another opinion? Does your current doctor deal with rsd a lot? I have been surprised since I am all about extra opinions before I do treatments because I had mistakes made in the past how the treatment of rsd can vary from doctor to doctor. Ok sorry to go on. You are in my thoughts and hope you feel better

[daylilyfan]

Botox might help you a lot! I had it in my shoulder when it froze up. It took a month or so but it became much better. I went to a neurologist who specializes in injections of all kinds. He told me as he was doing my shoulder that he uses it all the time on people that have clenched hands.

I'd sure try it before an ablation. If you look up ablations here on this board, you'll see lots of posts about them. I don't think they have helped very many.

There are posts about botox too. You will see some of mine that I had a bad reaction to it, so they won't do it again, but it did help. Dr. said that I am one of the few people he has heard of to have a bad reaction. All that happened is that it made my pain worse for a few weeks. Then, the muscles released and it was a lot better.

[Al1952]

Hi Daniella, My name is Mary. My husband has RSD Upper Body. I see you went to cleveland Clinic. Who did you see?, did they help at all?Are you from this area? We are trying to find a Dr around here that knows what he is doing. Thanks,Mary (You can send an Email to marye_liz@msn if you want.)

Originally Posted by daniella

I am really sorry for the loss of your home and pets plus the rsd pain condition. You are in my thoughts and I hope better times are ahead.
I am not familiar with the treatment your doctor wants to do on Tues. When my condition started pre rsd dx I was out in air boot. When I was dx with rsd and pn they had me get out of the boot. Because my foot/ankle had been stuck in one place I lost range of motion and from the pain could not move it. I did go to a pain program at Cleveland Clinic but due to my pain level only made it through a few days. What medications are you on? I did not do this procedure but at the time I could not move very much they wanted to implant a tunneled epidural catheter. I am not sure if there is similar for the arms. Anyhow the reason for this was to give meds and a numbing agent to allow me to go to PT. Then the catheter is taken out and you are to do pt on your own. I am not saying this is the right treatment for you but just some thoughts. Also what about ketamine infusions?I agree about getting another opinion? Does your current doctor deal with rsd a lot? I have been surprised since I am all about extra opinions before I do treatments because I had mistakes made in the past how the treatment of rsd can vary from doctor to doctor. Ok sorry to go on. You are in my thoughts and hope you feel better

[daniella]

Al hi I can answer any ? you have and you can direct message me. I live out of state but saw Dr Stanton Hicks and Dr Mckale plus did a few days of the pain program. I have mixed feelings about treatment there. I went on to see another pain doctor cause personally I did not like my treatment suggestion and felt anyone who goes to CC is suggested the same treatment path. I do know someone else who has seen Dr Stanton Hicks and had better results. I am not saying to not go to CC cause everyone is different and for ex if I were to do a spinal cord stimulator which I am not but anyhow I would probably want Dr Stanton Hicks because he does a lot of them with rsd. Feel free to DM me

[Reddawn600]

Originally Posted by stressedout

Things seem to be getting worse. I lost my home and 6 dogs in a fire back in May. thank god my kids are ok. since then i know i have been under alot of stress. my rsd hand/arm has slowly been getting worse. the tremor never stops and if i really try to stop it sometimes i can but then it jerks, it get very sweaty too now. swelling gets worse as the day goes on. my dr. wants to do a pulsed radio frequency ablation tuesday. i am just to a point where i don't care anymore as long as there is a chance it will help. now this morning i got up and my fingers won't open.
i have tried but my hand is stuck in a fist. i'm so scared, i thought i was doing good, i go on, don't let on to family how much it hurts. i get depressed because life is normal for them, not me. i feel useless. yes, i favor the arm. i've tried not letting it get me down but now i want to cry. i feel like i am losing it.

My left foot and hand did that on occasion before my ketamine treatment. I used to find moist or a bath to help the most but more then anything, Soma. I don't have time to read the whole thread at the moment (sorry!) but wanted to mention those things real quick in case they help. Any muscle relaxant or moist heat.