[cindi1965]

Hi, I am new to the board, but was diagnosed with RSD last year after having a severe staph infection. I am sooo glad I found this forum because it makes me feel like I ma not going crazy. I have been to so many doctors that just keep testing me for this and for that after my GP referred me for RSD. I have been treated so badly by doctors that I am very leery about going to anyone for tests. I also have mild cerebral palsy and I actually have had doctors tell me that I didn't look like I have CP. I have had it since birth and had surgeries to correct my walking. I have RSD in my left leg, which used to be my strong one and it is slowly but surely spreading to my right leg and right arm. I am on Lexapro, Xanax,Amitriptiline,Vicobrofen,and Baclofen. I can't take any of the seizure meds and Topamax made my eyes swell shut. So, they are trying to regulate the meds that I am already on. My pain doctor is hesitant at giving me the pain blocks because of my CP. Thanks for listening and I look forward to reading everyone's stories. My family also thanks you because this forum has helped me soo much

[DianaA]

Hi Cindi! I am happy that you have found this forum too. It has been a source of support and strength for many of us. I am celebrating my 20 year anniversary of RSD this July. I have full body RSD and I'm thankful to still be hanging around! I have made many great friends here ones I value dearly.
Welcome...looking forward to getting to know you!
Hugs,
Di






i

[SBOWLING]

Hi Cindi,

Welcome, to NT. You will find a lof of caring people here. I have had RSD for 9 years the last 7 it has been full body. The first several years were tough now I take it one day at a time. I survive the bad days and look forward to the good days.
Take care,
Sherrie

[loretta]

Hi Cindi and Welcome,
I'm happy for you too. I, likewise, feel the same way. I've learned so much and been encouraged by many compassionate friends. I am 61, have had RSD 13 years-following breast surgery-benign. Was diagnosed for 4 years. It is now full body. Right after surgery, I had stabbing pains and swelling in my arm. The Dr. withdrew fluid that was lime green. I had this done about 3-4 times. I didn't know that meant infection till just a few months ago. Then frozen shoulder then physical therapy.
I've just had a major breakthru. I hadn't been sleeping well,and my Dr. was doing a trial study on 200 people. He switched me from Ambien Cr. to a low dose of seroquel. It was amazing, I went from not getting to sleep until 5-6 in the am to sleeping all night -the restorative type of sleep. That, in turn, caused my pain to go way down. I've been on it 5 weeks. MY Dr. dropped my anxiety med, lorazepam in half and left it up to me to lower my pain med vicodin. I was able to go from 6 pills a day to 3 pills of vicodin. I even lowered the lorazepam an extra pill-so I went from 6mg of lorazepam to 2 mg.
I'm getting out of the house, getting my energy back. I had been pretty much in the bed fulltime. My time is limited right now, but I'll post later some of the things that have really helped me thru the years and my spread and pain. Take care, loretta

[Shey]

HI Cindi,
I to have had RSD full body 7 and total 10yrs.........I'm here if u need to chat I remember when I felt so alone I was in the medical field and didn't even know what I had had to learn from the puter and my wonderful Pain mgmt/RSD Dr.I got 2 years after it started in my wrist........But I was messed up bad by then so I understand hang in there ..........Were the strong thats why we have this disease.............Shey

[hope4thebest]

Hi Cindi,
I know the feeling of being so happy to find the message board...friends and family try to understand but because they can't experience the pain of RSD, it's hard to communicate sometimes. When I was first diagnosed, I went into a panic, shock and depression.
AFter learning more about it first hand from this board and other boards, I have been able to become more calm and not feel so alone in thought. If you keep searching you will eventually find a doctor or even a team of doctors that you will be able to trust, and who will be kind and who will have your best interest in mind...
I am sorry you have had such a hard time...
hope4thebest

[CRPSbe]

Welcome to the forum! I have RSD for almost 14 years now. The main thing is that if you react favorably to medication, that they find the *right* medication for you (not everyone is the same). I do hope they find the right "cocktail" for you soon!

[edever34]

Originally Posted by CRPSbe

Welcome to the forum! I have RSD for almost 14 years now. The main thing is that if you react favorably to medication, that they find the *right* medication for you (not everyone is the same). I do hope they find the right "cocktail" for you soon!

Hi Cindi

I am new here too. Welcome! Hope you can eventually find some sort of comfort level whatever that is for RSD!!-Carol

[bobber]

Hi Cindi
welcome,,feel free to ask anything,,,there are some informative people around,,i hope you are haveing a pain and stress free day,,,,,,your in my prayers ,,bobber

[Dew58]

Hi Cindi,
Welcome to the forum. It took 15 months to get my RSD dx,and this forum is my place to be with friends that KNOW my Pain. We all get pushed around by doctors that don't have a clue, and that is insult added to the injury, that we have already experienced.

I am available anytime.

WELCOME

Dew