Rsd
 

So...Im new on here.. Im 25 and I had bunion surgery in April 09 on my left foot only and now was just diagnosed with RSD:( I have had hives head to toe blisters on my hands and feet a few on my arms legs chest butt and tummy now i only have them on my feet??? Anyone else have this???? They are like little water blisters...

Hello Jenna,
Welcome to Neurotalk.
I see you found the RSD photo's & picture thread already.
I copied your first post to here so the members can welcome you.

Hi Jenna,
I want to welcome you to this site and let you know that this site is one the most awesomest sites.Everybody is so nice on here. Take a look around you will learn so much about this disease. I have had it for 7 1/2 years and yes I won't lie to you it is a huge monster.
With your question about hives I have them. The same exact thing they are like water blisters or I say they are like when you get burned they do the same thing. I don't much about them but I do get them they hurt like the dickens and I never know when I will get another one or where. Mine seem to stay forever it seems like and takes forever to heal. When they form and break open mine seem to turn into a huge sore,it is very sore to the touch or if I bump it it sends me through the roof and it seems like it takes 1 1/2 -2 months to heal. I don't know that is just a gestamation. Sometimes mine are very deep and those seem to take longer to heal. Yes I have had them on my hands,arms and feet. I always end up with nasty scars. All I know is they are not fun. I did start out with rsd in my left hand/arm and have not been diagnosed with it anywhere else but I feel alot of the symptoms that I have in the right arm and hand are similar to what it started out in my left hand. If you look at some of my other posts you may see what else I have been through but can't explain why.
Like I said just check this site out I think you will find it very helpful and that the people on here are wonderful.
Take care and hope things work out for you. Have a Happy New Year!

Sincerely,
Tracy

Hi Jenna and welcome to neurotalk> I'm sorry you are 'here' for this reason. But it's good to have support from caring friends, that truly understand this disorder.
I've had hives from seafood reaction and I've had 'lesions' from RSD flare and they are two different things. Did you have a Dr. diagnose hives? I've ha the RSD lesions-blisters filled with clear liquid. They are awful and take a long time to go away. Be really careful that they don't get infected. My RSD Doc had me sit in warm water many times a day and pat them dry. The warm water draws the infections to the service.
I'm so sorry you have this. It's really important to get treatment early.Do you have a RSD specialist? RSDSA is the national organization for RSD. The website is very good. You can put in your zip code and find the closest support group meeting or Dr. You have a shot at remission early on and that lessens the longer you have RSD. It sounds like a flare to me. This disorder is something that is imperative to fight early on.
Do you have any limbs that are freezing up? Physical Therapy and desensitization are two things very important to keep mobile. Massage therapy is something that helped me. Both pt and mass. therapy were torture.
A tens units is somethings that helped me. I wasn't diagnosed for 4 years, but started p.t. and m.t. from the beginning. Got rsd right after surgery. I thankful to be mobile. Have one hand that is partially paralyzed-frozen. It's been 15 years now.
You'll find kind, compassionate friends here. And a wealth of knowledge that help you get thru this. Another website that is so helpful is rsd.rx.com and under puzzles (really 146 questions with answers) from Dr. Hooshmand of Florida, is very good. He is retired now, but still has website up. There are some excellent Drs. in the country, that would be worth getting into if you can travel there. The cleveland clinic and Philadelphia have great Drs. My dr. just built two clinics that I'm going try HBOT for help in circulation. I think it's worth a try-some have found success, but need continued treatment.
Please stay with us and read read read. You'll find coping skills and comfort while you are reaching for remission. I went into remission twice for at least a year each time. A local support group can be very encouraging. stay positive and active. You may not play tennis, but you can stretch and water therapy with 86 degree water is excellent. Stay away from ice. water therapy-ymca, local gym, etc is low cost and you can go at your own pace.
Take care, loretta, with soft hugs:grouphug:

Welcome Jenna
 

Hey Jenna....

I, too am really sorry for the reason that you are here with us but we will all group together to try and hit the speed bumps as easy as possible for ya!! I've never had the lesions described so I am not able to share on that part of our condition but I would be happy to answer away should you have any other questions or concerns about RSD....Try to rest easy and have a wonderful nite...Jenna, our new friend!
KS:grouphug:

Hi Jenna! Sorry to hear about the RSD diagnosis :(

I too get lesions, they are a real bummer. Glad you found this great place full of great people. I dont get in here as often as I used to, or as often as I would like to. But wanted to jump in and welcome you to the forums :hug:

Hi Jenna!

And welcome! I get those nasty little bumps. They hurt like crazy and take forever to heal. Mine are on the back of my RSD leg. I have a really hard time wearing long pants, and with the blisters it's like having little tacks stuck everywhere. My doc gave me a script for "Sulfadene" cream. It's a cream that they use on burn patients. Seems to soothe the areas and give it a cooling feeling. Pretty inexpensive too.

Please feel free to ask or talk about anything here. I've learned more from our friends here than I have by reading up on RSD. Everyone here is very kind and compassionate. You have found a wonderful home. Have a happy new year!

Hi Jenna, so sorry to hear about your blister & hives as well as the RSD. Unfort. I have not experienced those symptoms.

It is nice to "meet" you, wish it could be under other circumstances...Look forward to getting to know you better.

Awna

Hi Jenna,

Welcome. I recommend you read as much as you can about RSD. Join the RSDSA, too - it's a great organization. And try to find the very best RSD doctor possible so that you can get proper treatment ASAP. It's so important to be diagnosed and treated properly by the right doc - you risk being treated the WRONG way or having your RSD spread if you go to the wrong place or wait too long.

In my case, I didn't receive any sympathetic nerve blocks for many months after being diagnosed with RSD in my shoulder by my ortho, and was instead injected many times in my cervical spine and occipital area with trigger point injections by a RI doc with little experience with RSD. As a result, my RSD spread to my neck and my head and I suffer from excrutiating head pain - I haven't been able to lay down on the back of my head for over a year and a half now. Be careful of docs that don't know what they are doing or don't have enough experience with RSD or are still reading textbooks from the 1980's...(see poor "Swatgen" who suffers from the terrible after effects from RFA). I later found a more experienced team in Boston and had my first stellate ganglion block Christmas Eve 2008.

One of the most knowldgeable posters here on this board is FMichael (IMHO). He has provided us all with great reference material on RSD treatments.

I would advise you to get to the nearest large university teaching hospital's pain clinic or a large city's medical center if you are able. Even better, Jim Broatch, of the RSDSA, will provide you with a list of doctors that provide ketamine, if you request it. Call a few of the doctors that are closest to you and arrange for a consult. Doctors that do ketamine for RSDers know RSD really well, and in my personal experience, are incredibly helpful and compassionate (except skip the Beth Israel in Boston - they are no longer taking new patients).

Good luck to you, and welcome. XOXOX Sandy

I agree, and a search of his posts, and Sandel's is a wealth of information!