Newly Diagnosed
 

Hello, I am a 28 year old female who just became diagnosed with RSD. At first I thought that I was having blood clots in my legs due to the swelling and the rash that I had. I also thought that I had shingles. I went to my doc yesterday and he stated that it is RSD, I have an appointment with a neurologist in September. This explains alot of the pain and discomfort that I have experienced. I had a injury to my leg back in April and the doc that this has made the RSD develop. I would like to connect with people to let them know what my journey is facing this diagnosis.

Welcome
 

Truthone76,

I'm so sorry that you have been stricken by RSD. However, you have found a very wonderful and caring place with many well informed people to help you.

Keep a positive outlook and arm yourself with information as you deal with the doctors providing your care. In the hands of the right medical team you have every right to a good life with and in spite of RSD.

Best regards,

:cool: EJ

so sorry.....
 

Hi,

I just want to welcome you to this forum. I'm truly sorry you have been diagnosed with awful disease. I was just diagnosed myself in March. I developed RSD after a rotator cuff repair surgery to my right shoulder. I know you didn't ask for any advice so I hope you don't mind me giving it.... The best thing I have done for myself since my diagnosis was to research everything I could about this disease, get yourself educated, get a good pain management doctor and don't give up! Sometimes if a person is diagnosed and treated quickly enough after developing symptoms of RSD there is a greater chance of getting it into remission and I sincerely hope that will be the case for you. There are lots of good web sites out there like rsdhope and so forth that will give you lots of good advice and info. about what you will be facing! wishing all of the best:hug: jenny

Hello Truthone76 -

Glad you found your way here. This is by and in large a good place to be, especially when the focus is on reaching out to people such as yourself.

A couple of quick points. First of all, there are two websites you should be aware of, if you haven't stumbled over them on your way here. The first is the Reflex Sympathetic Dystrophy Syndrome Association page at http://www.rsds.org/index2.html. There's a ton of stuff there, including a number of articles on various treatments writtem for lay people at http://www.rsds.org/3/treatment/index.html and a much more comprehensive library of medical articles at http://www.rsds.org/2/library/articl...ive/index.html. Once you're there, check out the following article, listed alphabetacally under "Research":

"Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome," Ackerman WE and Zhang JM, The Southern Medical Journal, 2006; 99:1084-1088.

The bottom line is that nerve blocks work very well if initiated within the first 16 weeks of the onset of symptoms. So, if you fall into that catagory, and you should pardon the expression, RUN, DO NOT WALK, FOR TREATMENT ASAP!

The second site not to be missed is that of American RSDHope at http://www.rsdhope.org/

Good luck with all of this. There's much more to be said, but this is a start.

Mike

Hello and welcome,
I second very vigorously that you get onto the treatment asap as there can be a huge difference in the outcome for you. Remission or cure ( I know some don't like to call it cure but permanent remission) is far more likely as Mike says, if treatment in the way of blocks is initiated in the first couple of months post diagnosis.
Wishing you luck
Tayla:hug:

Welcome! Read Read Read And Be Your Own Best Advocate. You Can Still Be Happy And Have Rsd!!!
Joan

Early treatment is extremely important to good outcomes.

After a couple years the condition tends to become intractible. It can still be controlled with drugs or even go into remission but the best bet is early treatment.

Reply
 

Thank you all for the support. I am so glad that I was able to find some place where I can talk and have someone that understands. The pain that I am in is really bad and I was given oxycodtin for the pain and it has not even worked. The rash is so painful. I really hope that this doc can help me. Does stress contribute to this condition at all ?

Hi Truthone and welcome
 

I am also new to RSD! I know how difficult this is for you... All of us face differnt battles.. Mine was simple being dx... Took me a little over a year...

You have found a wonderful place to be for support! Many people here are very wise and have much information... I must tell you that you need to arm your self with as much information and knowledge that you can... Sometimes you will know more then your doctor! I know that isn’t very comforting but it is true... RSD is not something some doctors know about or care to treat ... Find yourself a good pain management doctor..... That is one of the first very important steps… It took me 4 tries before I found one that I thought was capable of treating my pain and trying to do as much as he can for me!

If you ever need to talk I am here… You can private message me… For me my age was the hardest thing… I am only 21… It’s a new life style but I have learned to appreciate life for the little things… Each day is different some bad, some good, and some so so… I hope this site helps you… Look around there is so much to gain from this site… And if you have a question no matter how silly, dumb, or think its something you should know the people here are very helpful… Ask away!

Pain free hugs:hug: :hug: :hug:

hi truth,
yes, stress can definitely make RSD worse since stress affects the nevous system which is already over worked.
it has been my experience that narcotic pain relievers simply numb the brain so you do not notice the pain so much, but you are still having it, and also they can take away your quality of life if your reaction to them is sleeping all the time and just being 'out of it' on them. now some people do well on them when they adjust to them. the thing you will see with RSD is how different things work for different people. it is not as simple as say insulin for diabetes ... no one knows what will work for you. i think meds such as neurontin, and there are several in that category, and again some work better for some people that others, work best to relieve nerve pain. you have to try and see what works for you and monitor yourself carefully. please remember with RSD you will know what is best for you more than any doctor. and you may need to shop around for one of those too. some use RSD specialist, some pain specialist, some their primary care. it is all up to you.
joan