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.

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

Ada,

I've never heard of ketamine before - i'll look into it! That's what's great about this site. So many wonderful people with so much experience, knowledge and affection. It's refreshing. Too bad we share an awful bond - RSD.

Hi again Grammadur,

I am currently on 30mg Oral Ketamine. It is the ONLY pain med that helps for me a little and will usually take my pain own from an 8 and a half to a 6 and a half.

Most Doctors dont like prescribing Ketamine that much though as it is used on the streets by drug addicts. It is only usually used as a last resort if all else has failed. My Pain Management Doctor doesn't like me being on Ketamine that much because of my age aas he feels that it could mess up my hormones so I can only take it when I am in a really bad flare (which is getting too often now unfortunately)!

It is worth looking into the Ketamine though. There are a few people on this forum that are on it so it might be worthwhile speaking to them.

I wish you the best of luck and hope you find something that helps you soon!!

Hi Granmmadur. I have had the Ganglion blocks. They did not put my RSD in remission, however when the RSD moves up my arm it did help to stop it and keep it at the lower arm area. I also wanted to let you know that with the limb that has RSD, do not let anyone take your BP, or have any needle injections, if you can help it. I learn that one from experience!! I also have a lower memory loss. My Dr. saids he feels it is from dealing with the pain and using the pain medications. Hope this helps.

I appreciate the info about the B/P and injections in my arm. Believe me, if anyone gets close to that arm I holler

Hi Grammadur,

Welcome to the forum. I am sorry you have RSD and going through the by-products of RSD.

Are you keeping a daily diary? This will assist you in keeping your meds in check;also, it will be useful to have a diary to record your experiences.

A secret diary, that is for your eyes only. A place to vent...a place to write down what symptoms are popping up. Use the diary to remind you of questions you may have for your doc.

The meds can cause memory loss;however, the brain is effected by RSD. The entire body is effected by RSD. I do a lot of research.

You can always vent here..I am available anytime you wish to chat.

Stay Positive!


Dew

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?