New to rsd
 

I have been a member of the 'TOS CLUB" for almost 10 years. I was recently diagnosed with RSD and would love some insight. I have TOS in my right shoulder, neck, arm and chest. I was told the RSD is spreading to my left side and also to my legs. My right lung does not expand completely and I have tremors in my hands. My palms sweat and I am in pain all the time. I am a 45 year old woman, fairly small and have recently lost alot of weight (20 pounds). For me that's alot. I was told to do the 10 day Ketamine infusion and feel very overwhelmed. I would love some advice. Thanks, Linda

Hi LinJane
 

I too was a TOS club member for years. First on the BT forum and now here.

My TOS started on the left side and then I ended up with my right side worse due to a nutty Osteopathic Dr. and had to have surgery on the right side first which brought out the RSD.

I was wondering if you have had blocks. They seem to help put it in remission for a lot of people. They did me. I had 3 and had to quit due to a panic attack but they usually do series of them.

Welcome to the group and there will be someone come on that will tell you about the infusions.

Ada

Hi and welcome to the board. I know how scary and confusing this and finding the right treatment. I have been to a few PM docs and all have said to different things. Anyhow I too wonder what you have tried before this. Are you on any meds?I have not had the kentamine though one PM suggested it. I had read that there are different ways of doing it and to get the best benefit. Hang in there and maybe do a search on that on the board to see experiences.

Hello and Welcome to the Neurotalk, LinJane!! 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 about everything that you are currently going through!:hug: I too understand just how scary it is being diagnosed with RSD and not knowing much about it. I remember when I was first diagnosed, I was REALLY frustrated at the Doctors for giving me a diagnosis but not knowing how to treat me or what to do to make me all better!!

I have RSD in my left leg and right arm and now possibly left arm also. I developed it when I was 12 years old after an ankle sprain and I am now 14.

If I could give you any advice, it would be to keep moving your affected limb as much as possible. I KNOW it hurts like h*ll but it is probably the one thing that will help you in the long run. My Physical Therapist always says that I am in pain whether I am sat around doing nothing or doing something so I may as well be doing something ... it took a while to get used to that but it now makes sense. Do you have any PT at the moment? If not, it might be worthwhile getting in to see a Physical Therapist and see if they can do anything to help you - please make sure that they specialise in RSD and other similar conditions though!!!!

I haven't had the Ketamine Infusion however I am currently on Oral Ketamine and it is the ONLY drug that has even touched my pain!! I am only allowed to take the Ketamine on my worst days (when I am in a really bad flare, done too much etc) as my PM Doctor feels that it could affect my hormones because of my age. It doesn't take the pain away completely but it takes it from an 8 and a half/9 on the pain scale to around a 6 and a half. I would do a lot of research into the Ketamine before deciding to go ahead with it ... no one can force you into doing anything that you aren't happy with!!!! No two people are the same unfortunately and everyone reacts differently so it is extremely hard to know that will and what wont work for you.

I also have the tremors that you have. I have 3 spasms; Dystonia which causes my leg to bend into strange and really painful positions, Myoclonus which causes my leg to thrash wildly in the air and the tremors. I have tried lots of medications to try and stop them but nothing has worked so far. Are you on any muscle relaxants at the moment?? Many people have success with Muscle Relaxants such as Baclofen so that might be something to look into if you haven't already.

Take care of yourself and i'm sorry if i'm rambling - it's been a long and painful day today. Know that we care about you and if you have any questions, please feel free to ask and we will try and help you if we can!!

Alison.

welcome
 

hi linda
how are you. i dont have TOS but have alot of the same symptoms with my rsd. i havent had ketmaine treatment i have a morphine pump with fentanyl for my rsd ..before the ketamine i would try other things .. the ketamine is very costly and most insurance wont pay for it. i know that there is a hugh waiting list also..

hope to see ya around

carrie

Hi Linda
 

I too want to welcome you here. I have not done the ketamine though it was suggested by my doctor, so I can't share any personal experience about that.
But, I do want to agree with Ali. My doctor gave me some valuable advise 20 years ago when I was dx'd with RSD that was, "Keep Moving". I know that can be more difficult than it sounds but, I believe great advise. It has served me well. As far as treatment, you will find lots of personal experience here and find the ways that works best for you, through trail and error. Blocks may be helpful as they were for me. Again, welcome to the forum and I look forward to getting to know you better. Hugs di

Thank You!!
 

I was so happy to hear from all of you. I have been on the TOS site for along time. The one thing about movement is my Dr. if Philly said not to use my right arm at all! My pain has spread to different areas and I am using more percocet than before. I also take neurontin. There are so many symptoms that I never associated with TOS that are now turning out to be RSD. The tremors, when I'm typing my fingers skip to a different key. I feel like I'm shaking all the time. Palm sweating. I'll wake up some days and can't move or even tell my husband I need help. Ketamine seems so extreme but I don't know what to do. I have been doing online research and that's also why I'm here. My arms and legs hurt constantly. By the end of the day I'm done!! My husband understands sometimes but, it's selective. I have increased pain meds and have to now call the doctor for an early renewal and I don't know how that will go.

Thank you for all your support. It was a big blow with this diagnosis and treatment. Any information is greatly appreciated. Linda:grouphug: