[Grammadur]

Hi everyone,

I'm new to all of this... I have RSD and am confused by everything. Many of you went undiagnosed for years, saw many doctors, and underwent tortuous testing. I guess I'm "lucky" because I know when I got RSD - Jan. 23, 2009 at 2:25 p.m. I was to have a cervical epidural steriod injection on the left side of C6-C7 but the pain management physician was in a hurry and injected the right side. Instant RSD in my right hand and forearm!

At present the pain is manageable with 300 mg of Lyrica, Flexeril and Darvocet when needed, so the pain management specialist is happy. But I've gained 10 lbs, can't remember sh.., have no concentration, and still feel pain with cold air and water.

I have confusion about what to do next. The Neurosurgeon I was referred to said we can do a ganglion block that may or may not help. Some literature I've read said that's risky for someone who already is prone to RSD. Anything to do with the nerves may well aggrevate them even more. I certainly don't want any more pain and I certainly don't want any more medication. And I'm
not crazy about physicians' sticking needles in my neck - again!!!!!

Has anyone been cured? What are the best options out there?

Grammadur

[dennyfan]

Grammadur, I am sorry this happened to you. Treated aggressively & quickly you have the possiblty of remission but there is no cure for RSD. I am sorry. I can understand being scared of blocks. They work really well for some people & do not work for others. I had 2 of them & they did not work for me. SO I had to have a Spinal Cord STimulator implanted last year. My RSD also started in my right upper body. Its now spread because of the stimulator surgery. But I have known people who had excellent results from blocks & thats why I tried them. I hope more people answer you. Its probably the neurontin that made you gain weight. It did it to me when I started on it to. You are correct it took me over a year to get a correct dx. And I saw some mean doctors until I found my current team. I am glad you didnt have to go through all of that. I hope you continue to get good treatment & maybe you can go into remission. Its a possiblilty if you get treated early. Good luck.
Hugs, Denny

[DianaA]

Hi Grammadur! I have full body CRPS for 20 years in July. The stelate ganglion blocks worked for me. I had three series of ten each. I didnt like the stick in the neck either, but I did get good pain relief, only they were temporary. I then had a sympathectomy at the University of Mass. Now I have a home Hyperbaric chamber, that helps keep my pain levels down. Everyone here seems to find their own path through trail and error also, by asking questions just like you are. The good news is that some of us, after too many RSD years are still in the fight and loving life regardless. Oh, I have down days, very painful days and very depressed days. But, one day at a time I have survived 20 years. The Hyperbaric Oxygen Therapy has really helped me. I know you will find what works for you. I'm sure others will add their experience, too. Hang in there. I look forward to seeing you around. Di

[ali12]

Hello Grammadur and Welcome to Neurotalk!!! You will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!

I'm so sorry to hear that you suffer from RSD also. I have RSD in both arms (although it is still to be confirmed in my left arm but the PT's say that it is more than likely RSD as all of the symptoms are the same) and my left leg also. I developed it when I was 12 years old after an ankle sprain and am now 14. I have tried all sorts of things to try and make it better but nothing has really helped.

As some of the others have said, unfortunately there is no cure for RSD HOWEVER it CAN be managed with medications and different therapies such as PT etc. You are lucky in the sense that you were diagnosed very quickly - doctors say that the best chance of RSD going into remission is if it is caught within 3 months and you start with agressive therapy. Remission basically means that you have no symptoms of RSD or that you can do all of the things you want to do with little pain.

Are you currently seeing a Pain Management Doctor?? They are usually the best doctors to treat RSD as they can prescribe pain meds and do nerve blocks etc.

As for the nerve blocks, everyone is different in how they react. They work really well for some whilst they might not work at all for others. I have had 2 nerve blocks and the first one didn't go well at all. My Doctor injected directly into my RSD leg and it made me SO much worse - I was left wheelchair bound for 13 months afterwards. It was only when I had the nerve block that we found an article on the internet stating that you should NEVER inject directy into an RSD limb unless it is absolutely neccaasary - unfortunately, my doctor didnt know that at the time!! I later went in hospital for a splint making for my RSD leg as I have severe Dystonia and my doctor had to splint under general anaesthetic and he did a Ketamine Epidural on me to try and manage the pain afterwards. The epidural worked very well and the pain went down from an 8 and a half on the pain scale to about a 6 although the affects only lasted 6 hours or so unfortunately. It's believed that the nerves in all of my RSD limbs are so wound up that no one can do anything invasive as it will make things worse. I have to stay away from all surgical interventions if at all possible in my RSD limbs.

I hope I didn't scare you with what I said about the nerve block and how I reacted - that was never my intensions but I just wanted to tell you to be careful and not let the doctor inject directly into your RSD limb unless they absolutely have to!! If you decide to go ahead with the blocks, I would research as much as possible and also make sure the doctor knows what he is talking about - dont be afraid to ask him any questions as its important you feel comfortable and dont feel like the doctors have to force you into doing anything - it is entirely your choice and no one can force you into anything - you know your body better than anyone else!!!

Are you having Physical Therapy at the moment??? It's really important that you keep moving as much as possible - I KNOW it's really painful but it is probably the one thing that will help you in the long run!!

Take care of yourself and if you need anyone to talk to, please know that I am here for you and that I DO understand how scary it can be when dealing with such an awful condition!!

Sending many pain-free hugs your way and hope to see you around here more soon!!

Alison.

[dreambeliever128]

Sorry to hear that you are going through this.

I think a lot of those meds cause weight gain. Neurotin and Lyrica both do in most cases.

As far as a lot of Drs. I think between us all, we have seen most all of them to get diagnosed and medical attention for RSD.

I really think the blocks will help you. Some people may stop too soon, some Drs. may use different meds, and sometimes they may now work but do give them the chance.

People have so many options of getting the help they need. I think Physical Therapy is very good if you find a PT that works with RSD and knows something about it.

HBO is used by people also and can help. I met a lady in Denver years ago that was doing it there for RSD and TOS and it was helping her.

Also, ketamine treatments seem to be something pretty new coming in to the light the past few years.

As far as meds, again, it depends on each person. I tried all of them until I got to Methadone and I loved it. I am off of it now but I took it for years and to me it seemed to have the least side effects for me.

Some people here end up with the SCS and some the pain pump.

We have found our way to help with the pain in a lot of cases, as someone else said, there isn't any cure.

I'm glad you found us and I do hope that you start feeling better soon.

Ada

[gardengrl]

Hi Grammadur and Welcome to Neurotalk!! I'm Not an expert on ANYTHING, but I can assure you that you will find much Needed support & amazing info. here on NT.

I started a short time ago & have learned more here then EVER through a Dr...There are sooo many articles & 1st. hand experiences here. This place & all the people here are a BLESSING to me! Good luck with your pain management!

[Grammadur]

Originally Posted by gardengrl

Hi Grammadur and Welcome to Neurotalk!! I'm Not an expert on ANYTHING, but I can assure you that you will find much Needed support & amazing info. here on NT.

I started a short time ago & have learned more here then EVER through a Dr...There are sooo many articles & 1st. hand experiences here. This place & all the people here are a BLESSING to me! Good luck with your pain management!

It's great to know that I'm not alone!

[Grammadur]

Originally Posted by dennyfan

Grammadur, I am sorry this happened to you. Treated aggressively & quickly you have the possiblty of remission but there is no cure for RSD. I am sorry. I can understand being scared of blocks. They work really well for some people & do not work for others. I had 2 of them & they did not work for me. SO I had to have a Spinal Cord STimulator implanted last year. My RSD also started in my right upper body. Its now spread because of the stimulator surgery. But I have known people who had excellent results from blocks & thats why I tried them. I hope more people answer you. Its probably the neurontin that made you gain weight. It did it to me when I started on it to. You are correct it took me over a year to get a correct dx. And I saw some mean doctors until I found my current team. I am glad you didnt have to go through all of that. I hope you continue to get good treatment & maybe you can go into remission. Its a possiblilty if you get treated early. Good luck.
Hugs, Denny

IF the block helps the pain, do you know if it helps the other stuff like confusion, lack of concentration, forgetfulness?

[Grammadur]

Originally Posted by DianaA

Hi Grammadur! I have full body CRPS for 20 years in July. The stelate ganglion blocks worked for me. I had three series of ten each. I didnt like the stick in the neck either, but I did get good pain relief, only they were temporary. I then had a sympathectomy at the University of Mass. Now I have a home Hyperbaric chamber, that helps keep my pain levels down. Everyone here seems to find their own path through trail and error also, by asking questions just like you are. The good news is that some of us, after too many RSD years are still in the fight and loving life regardless. Oh, I have down days, very painful days and very depressed days. But, one day at a time I have survived 20 years. The Hyperbaric Oxygen Therapy has really helped me. I know you will find what works for you. I'm sure others will add their experience, too. Hang in there. I look forward to seeing you around. Di

You certainly are an inspiration! I hope you are having a pain free day.

[Grammadur]

Originally Posted by ali12

Hello Grammadur and Welcome to Neurotalk!!! You will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!

I'm so sorry to hear that you suffer from RSD also. I have RSD in both arms (although it is still to be confirmed in my left arm but the PT's say that it is more than likely RSD as all of the symptoms are the same) and my left leg also. I developed it when I was 12 years old after an ankle sprain and am now 14. I have tried all sorts of things to try and make it better but nothing has really helped.

As some of the others have said, unfortunately there is no cure for RSD HOWEVER it CAN be managed with medications and different therapies such as PT etc. You are lucky in the sense that you were diagnosed very quickly - doctors say that the best chance of RSD going into remission is if it is caught within 3 months and you start with agressive therapy. Remission basically means that you have no symptoms of RSD or that you can do all of the things you want to do with little pain.

Are you currently seeing a Pain Management Doctor?? They are usually the best doctors to treat RSD as they can prescribe pain meds and do nerve blocks etc.

As for the nerve blocks, everyone is different in how they react. They work really well for some whilst they might not work at all for others. I have had 2 nerve blocks and the first one didn't go well at all. My Doctor injected directly into my RSD leg and it made me SO much worse - I was left wheelchair bound for 13 months afterwards. It was only when I had the nerve block that we found an article on the internet stating that you should NEVER inject directy into an RSD limb unless it is absolutely neccaasary - unfortunately, my doctor didnt know that at the time!! I later went in hospital for a splint making for my RSD leg as I have severe Dystonia and my doctor had to splint under general anaesthetic and he did a Ketamine Epidural on me to try and manage the pain afterwards. The epidural worked very well and the pain went down from an 8 and a half on the pain scale to about a 6 although the affects only lasted 6 hours or so unfortunately. It's believed that the nerves in all of my RSD limbs are so wound up that no one can do anything invasive as it will make things worse. I have to stay away from all surgical interventions if at all possible in my RSD limbs.

I hope I didn't scare you with what I said about the nerve block and how I reacted - that was never my intensions but I just wanted to tell you to be careful and not let the doctor inject directly into your RSD limb unless they absolutely have to!! If you decide to go ahead with the blocks, I would research as much as possible and also make sure the doctor knows what he is talking about - dont be afraid to ask him any questions as its important you feel comfortable and dont feel like the doctors have to force you into doing anything - it is entirely your choice and no one can force you into anything - you know your body better than anyone else!!!

Are you having Physical Therapy at the moment??? It's really important that you keep moving as much as possible - I KNOW it's really painful but it is probably the one thing that will help you in the long run!!

Take care of yourself and if you need anyone to talk to, please know that I am here for you and that I DO understand how scary it can be when dealing with such an awful condition!!

Sending many pain-free hugs your way and hope to see you around here more soon!!

Alison.

Ali,
Thanks for all the info. You sure have a lot of experience with this - unfortunately. Do you suffer from confusion, lack of concentration and short term memory loss too?