Did anyone else have issues with accepting the RSD diagnosis? I have heard it from two doctors and yet, I refuse to accept it. Did anyone else experience this same thing?

Not me.

It took a couple years before anyone even said what it was and more years before a diagnosis. By the time of the diagnosis anything would be preferable to limbo.

I'm so sorry. My doctors told me that I have RSD, but have not said anything about pain management. the only thing that has been mentioned is the MRI they are trying to schedule...

The insurance companies, apparently, are sticklers for excluding all other possibilities before allowing treatment for RSD. They would allow pain relief, but doctors, apparently, are loathe to prescribe pain relievers because of close governmental oversight. Many doctors, apparently, are not even allowed to write prescriptions for the few drugs that are usually effective for RSD.

Talk to the doc and see if he'll refer you to a pain specialist or anesthesiologist for pain relief in the interim. Doctors advise that this should be considered a last resort because pain relief will not help with the disease itself and can lead to serious side effects like addiction.

Don't take medical advice from me but it's also said that a properly managed pain program is very unlikely to lead to addiction. Talk to the doc but I would suggest not trying to get an Rx. Let him steer you to or from one.

This is a very sensitive area for doctors. Most pain relievers are ineffective. Ultracet or an equivalent works a little for some people and seems to be easier to get. It's addictive and should be treated with respect. Ask the doc.

This isn't a death sentence. It will change your life completely if you can't shake it but it won't necessarily destroy it. You have a good chance of a "cure" if it's caught in the first two years. Some people are cured by the very first block. Don't get your hopes too high but there are several techniques they can try to put this in remission. You have early diagnosis on your side.

It's even possible that the tests will turn up something more benign. Keep hoping.

If it does get cured you have to be very careful since it can come back easily.

Good luck.

Hi Stephanie,

From amother post you wrote, it appears you were injured in November, and averyone will have suggestions about what you should do when an injury is that recent. I think it would help all of us if you could explain your symptoms in more detail, just about all of us divide RSD into two stages, and agree that early and aggressive treatment is essential.

Any changes in skin color are important, as is the kinds op pain, does the skin burn or sting; or hurt inside? Does cold affect your RSD? Does heat? Is there more than one degree temperature difference between your affected and contralateral (opposite) limb? Have you noticed any changes in your hair or nails?

I'm a firm believer in early and aggressive intervention, and what you tell us about your signs and symptoms will help us formulate our replies. I know it will help me figure out what to say...Vic

I totally agree with Vic on the aggressive intervention is "Vital" in early diagnosis. The earlier the better
the outcome. Of course you will have to continue activity to ensure remission will remain and try to avoid
having another incident that will cause injury....which sometimes could be difficult to do.

But this is NOT a death sentence, but yes it is a life changing situation, which you can do great things with it as long as you remain positive and informed.

I know it can truly get you down and have you so overwhelmed right now, but it will be alright.

You are in my prayers and I wish you all the best.

Love, Peace & Blessings,
Marla

Yes. And the more I read about it, the more I refused to accept it, which ultimately I had to work through with the help of a counselor. I actually think that once I got myself to accept it (8 months after two diagnoses), my anxiety decreased, which actually helped my RSD to improve, albeit ever so slightly. But ever so slightly is heaps better than not at all

Dear Stephanie and friends, Yes, I am kind of somewhere between still being depressed over the diagnosis and acceptance. For one, when I was told by a orthopedic specialist, I didn't have a clue what he was talking about. He had seen me for 2 minutes, (I had flown across the country) after going from Dr. to Dr. for 4 years. After, I had testing, he confirmed it and gave me a stack of papers to read. I started physical therapy and flew back home. Continued phy. therapy, but needed more help mentally. All the life changes and losses was just to much for me. My phychiatrist is a wonderful person, also a neurologist, and pharmachologist. So he has me on tract with very little pain meds, really on just one, and was able to reduce that after changing to lyrica. But I still find myself in this dark hole, with my life and missing the energy I used to have. Discouraged about the weight gain. I'm on a program for exercise and a goal ofo 5 lbs a month, but it is so hard. My daughter is a huge encouragement. We used to play tennis together, hiking, snow ski, water ski, shop, trips together, I truly am grateful for the memories. She is visiting here now. I just want my life back they way it used to be. I've had other tragedies in my life and have recovered, like my mother dying at 46 from cancer-neglect of a DR. My father dying 8 years later of heart attack.. 3 yrs. counseling. I have many close friends, but as you know it's hard to understand only pick a couple to talk to. I have been also diagnosed with fibro. Swimming is the best exercise for everything. so that's my next goal, getting back into the pool. It's warm and only a few blocks away- health club. I know there is so much suffuring of other kinds and I really try to comort others in their pain. I have two very close friends that each had a child die. One a daughter 28 and other a son 33. My own Dr. lost a daughter suddenly at 23 I believe. Another thing I used to do was journal, and I think I'll start that up again. I forget your name, but I think Marla, how did you find out you have MS? Does that often come behind RSD and Fibro?
Thank you for listening. I hope something in my writing is of encouragement to someone. It really is hard to accept, especially when it is discovered after two year window. I've been thinking about trying to get more information in the medical communityl I have two neighbors that are Drs. One is a teaching professor and actually my Dr. teaches monthly in about 3 neighboring states. Just think if RSD was in each medical college at some point, so young Drs. could recognize the symptons! that would be wonderful, and one the lecturing circuits, if even a brief description and photos shown.'
Well, I wish you all comfort your friends and family and compassion from your Drs. and nurses. If we don't get it , just maybe, we should ask for it with a smile.

Soft hugs to all,

Loretta jewell

Hey,
Yes I didn't want to accept that I had RSD. The day I was diagnosed with RSD was the worst day of my life. I have finally come to terms with the diagnosis though.
Take care and I am sorry that you are dealing with this monster
Alison