Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hello Everyone,
I am an active member of DS and primarily suffer from chronic pain related to 3 failed back surgeries. While I do not think there is any hope for my back, I DO have a story of HOPE related to RSD. Let me first say that I empathize with anyone going through this kind of hellish pain.
I was diagnosed with RSD back in 1994. Doctors didn't know alot about it then, therefore, it took one full year for my pain & symptoms to be diagnosed. I remember it was absolute AGONY. I have RSD bi-laterally in my arms & hands. The pain was so excrutiating that I wanted to take an axe and chop off my arms, ANYTHING to stop the relentless pain. I always described my pain to my friends and family in the simplest way possible. I told them that it was like an "On & Off" switch. I had painful "currents" constantly running through my arms/hands and they did not know how to turn themselves "Off".
After approx. 1 1/2 yrs of living with the intense pain, I was referred to a doctor who wanted to perform "nerve blocks" to help treat my RSD. After careful consideration (the side effects were scary), I decided that I would do anything to get rid of the pain, so we proceeded with the nerve blocks. I had them done 3 times per week for a total of approx. 12-14 treatments PER ARM. I didn't feel immediate relief, but I DID GET RELIEF, and though the relief was a little delayed in coming (1 month), not only did it come, but I have been nearly pain free, from my RSD, for 17 yrs now. Yes, I still have an occassional flare-up. If I am using my hands too much to type on the computer, my hands will cramp and occassionally I will have painful "currents" run through my arms, however, they both seem to be rare occurrences these days.
At a time when I didn't think there was any hope, HOPE came. For those of you who have tried nerve blocks and have only had 2 or 3 of them done, please re-consider and try again. If I had personally only stopped at 2 or 3, I would not have experienced the relief the nerve blocks ultimately provided. If nerve blocks are not the answer for you, be persistent in seeking additional treatment. If one doctor is not treating you properly, go to another, and another, until you find someone who CAN help you. I know it is exhausting, but please DO NOT GIVE UP!
I am very blessed that my RSD is currently under control and I pray that yours will be too, very soon.
God Bless & Hugs to All,
Carrie
I am an active member of DS and primarily suffer from chronic pain related to 3 failed back surgeries. While I do not think there is any hope for my back, I DO have a story of HOPE related to RSD. Let me first say that I empathize with anyone going through this kind of hellish pain.
I was diagnosed with RSD back in 1994. Doctors didn't know alot about it then, therefore, it took one full year for my pain & symptoms to be diagnosed. I remember it was absolute AGONY. I have RSD bi-laterally in my arms & hands. The pain was so excrutiating that I wanted to take an axe and chop off my arms, ANYTHING to stop the relentless pain. I always described my pain to my friends and family in the simplest way possible. I told them that it was like an "On & Off" switch. I had painful "currents" constantly running through my arms/hands and they did not know how to turn themselves "Off".
After approx. 1 1/2 yrs of living with the intense pain, I was referred to a doctor who wanted to perform "nerve blocks" to help treat my RSD. After careful consideration (the side effects were scary), I decided that I would do anything to get rid of the pain, so we proceeded with the nerve blocks. I had them done 3 times per week for a total of approx. 12-14 treatments PER ARM. I didn't feel immediate relief, but I DID GET RELIEF, and though the relief was a little delayed in coming (1 month), not only did it come, but I have been nearly pain free, from my RSD, for 17 yrs now. Yes, I still have an occassional flare-up. If I am using my hands too much to type on the computer, my hands will cramp and occassionally I will have painful "currents" run through my arms, however, they both seem to be rare occurrences these days.
At a time when I didn't think there was any hope, HOPE came. For those of you who have tried nerve blocks and have only had 2 or 3 of them done, please re-consider and try again. If I had personally only stopped at 2 or 3, I would not have experienced the relief the nerve blocks ultimately provided. If nerve blocks are not the answer for you, be persistent in seeking additional treatment. If one doctor is not treating you properly, go to another, and another, until you find someone who CAN help you. I know it is exhausting, but please DO NOT GIVE UP!
I am very blessed that my RSD is currently under control and I pray that yours will be too, very soon.
God Bless & Hugs to All,
Carrie
I am so glad this has worked so well for you. I have RSD also and know that agony. The nerve blocks do not work for me, but I know some that they do work for and some they don't.
I have been on Topamax for several yrs and it calms some of it down for me. I think it's a personal thing what works for one person might not work for another, but we have to try it all!
I love your spirit and you are so right in saying to keep trying and to insist on being treated properly!
Big HUGS to you,
Toni
Something for everyone.
I suffer from rsd across my body. Unfortunately, I think the doctors in England are not as open as American doctors. They are reluctant to let you to have a nerve block unless you are bed bound and I cannot pay for private treatment. As I try to go about my day to day life, they say that 'Im ok and too young to have a nerve block'. If only they could understand the pain.
But...you are so right to say dont give up! And I love your positive attitude! Go you!
I have a scs implanted and it works as my RSD "off switch." Though the stim signal displaces the pain signal, it also comes with a "taser-like" feeling. The trade off is worth it to me.
When I went to my first PM doc appt, he talked about nerve blocks for my RSD in my r.foot. He described it as like a computer, when you reset it. It resets the nerves in the affected part and they (hopefully) function normally afterwards. He also said it usually took more than one treatment to get the full effect.
Thank you for your testimonial. It gives me hope that the pain might be reilieved without a lifetime of narcotics.
I sometimes want to chop off my foot, like you were with your arms/hands. I can't imagine having it in an upper extremity. Somehow that seems worse than in a lower extremity. At least I get some relief when I put my foot up.
Great post!
Sandy
Thank you for sharing some hope with us.
My Immuno doc just started saying he thinks some of what has been thought to be neuralgia from shingles ( without rash).. is more likely RSD. I hadn't had any luck with blocks for those areas yet, and have been deciding whether to give it another shot...no pun intended.
Given your story...I think I will......thanks...hugs...jc
I am not sure where the entry point was for some of you who tried the nerve blocks because RSD can affect so many parts of the body, if not the whole body itself. With mine being the upper extremities, my doctor used a very long (6 ") needle and went in through my "adams apple". Though she had treated other patients for RSD, I was the very first patient that had it bi-laterally (yay me!) Okay....not really. She had to treat each arm seperately, meaning that I had to have a series of nerve blocks to treat the left arm, then we switched to the right arm as they could not be done at the same time. Anesthesia was injected into my nerves in an attempt to "re-train" them, similar to what Sandy mentioned, when she used a computer as her analogy. After she completed each nerve block, I NEVER FELT ANY BETTER, until some time after we completed the entire series as mentioned in my 1st post. As a matter of fact, she GAVE UP ON ME when they seemingly were not working. She actually told me to "go home and live with it". Then sometime within that first month after ending the treatment, something miraculous happened because I started to feel better and continued to do so. I always feared it would come back. Of course, the condition itself is still there, but the screaming, relentless pain that once made me want to chop off my arms was not. I thank God for that and as ticked as I was at my doctor to treat me as badly as she did in the end, I was grateful for her too. I think that she was just so frustrated thinking that she wasn't helping me, she thought it best to "dismiss" me. I remember that day like it was yesterday. My doctor basically left me with no hope and I literally spent all night crying my eyes out.
jancam: I am so glad to hear that you are going to give it another try. I am not sure how many you have had done, but please try to stay with it until you know in your gut that you shouldn't try any longer. Hopefully, it will be worth it for you. I certainly hope so.
I am glad to hear that some of you found other options to lessen your pain and to the rest of you, please continue to fight the fight. Eventually, you will WIN.
All my best & gentle hugs for everyone,
Carrie
Healing hugs