Hi, I'm 15 years old and I was diagnosed with Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS) on February 14th, 2008 in my left foot. Before it got better, pain grew up and down my left leg and it took about 6 months of physical therapy for pain to decrease and for me to be able to walk. For another year i had re-occuring pain in my left foot and leg and swelling every day. But, the pain started going away finally after a year from being diagnossed. But, for the past year I've been having extreme pain in the top of my left back and shoulder, and it just keeps getting worse, do you think this could be the RSD spreading, or something else?
Also, I have extreme fatigue and pain in all my limbs do you think that is from RSD too?

Hi Nikki,

My daughter is 16 years old and has had RSD for many years. It started in her left ankle and did spread to other parts of her body. But, you need to go and see your doctor to get a diagnosis. Have your parents make an appointment. Make sure it isn't something else. And if by chance it is RSD, then you need to get back into PT to stop this in its tracks. I am so sorry you are in this kind of pain. I know first hand as a parent what you are going through. Good luck and get yourself checked out.

Sandy

My husband was diagnosed in Oct/2009 with CRPS in his hand.

Around New Years he started complaining of a stiff shoulder. I nagged him to mention it when he went to PT but he put it off for 3 weeks until I finally went with him and asked them myself.

We were certain they would say his CRPS had spread, but his ortho diagnosed him with frozen shoulder and he started PT for that at the end of January. He has worked his tail off on his exercises and now has about 95% of his range of motion back.

So I would say, it certainly could be CRPS, but it's not necessarily that. You should get a diagnosis and some exercises to do on your back and shoulder. I truly believe that activity is key.

Good luck!

Hi, Frozen shoulder is often another name for RSD in the shoulder. RSD used to be called shoulder-hand syndrome. I got frozen shouldler following breast biopsy. took 100 psysical therapy treatments to get full range back. The therapist told me to not be surprised if it went to the other shoulder- and it did. I now have full body RSD.
Go to rsdrx.com It is from Dr.Hooshmand who practiced RSD for 40 years-now retired but still has his website still up. Under puzzles List he has 146 questions-one of which is about frozen shoulder-please read. The puzzles are actually 146 questions with his answers. Hope the best for your husband.
Water therapy is excellent-temp needs to be 86 degrees. Hot tubs too hot.
Let us know how he is. I used a tens unit Dr. diagnosed for me. It is not invasive and worked well.
I was diagnosed for 4 years. After getting range of motion back, it did move to other shoulder. more therapy. Then went to hand of original shoulder. I was misdiagnosed with RA, but flew to orthopedic group in another state and diagnosed with RSD in 1 minute by ortho hand specialist.
Besides physical therapy, something that helped me was I always did a light massage therapy-full body for an hour before the physical therapy. I did it on my own and believe that is why I don't have skin sensitivity. I also did therapy at home. My therapist had me get 5-6 plastic bowls and put cotton balls, rice, coffee grounds, pieces of cloth, beans and run my hands,feet etc thru the different textures. I don't have allodoynia-sensitivity to wind, clothes etc.
Please let us know how things are going. One of your new friends, loretta

Quote:
Originally Posted by mjl1261
My husband was diagnosed in Oct/2009 with CRPS in his hand.

Around New Years he started complaining of a stiff shoulder. I nagged him to mention it when he went to PT but he put it off for 3 weeks until I finally went with him and asked them myself.

We were certain they would say his CRPS had spread, but his ortho diagnosed him with frozen shoulder and he started PT for that at the end of January. He has worked his tail off on his exercises and now has about 95% of his range of motion back.

So I would say, it certainly could be CRPS, but it's not necessarily that. You should get a diagnosis and some exercises to do on your back and shoulder. I truly believe that activity is key.

Good luck!

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Hi, Frozen shoulder is often another name for RSD in the shoulder. RSD used to be called shoulder-hand syndrome. I got frozen shouldler following breast biopsy. took 100 psysical therapy treatments to get full range back. The therapist told me to not be surprised if it went to the other shoulder- and it did. I now have full body RSD.
Go to rsdrx.com It is from Dr.Hooshmand who practiced RSD for 40 years-now retired but still has his website still up. Under puzzles List he has 146 questions-one of which is about frozen shoulder-please read. The puzzles are actually 146 questions with his answers. Hope the best for your husband.
Water therapy is excellent-temp needs to be 86 degrees. Hot tubs too hot.
Let us know how he is. I used a tens unit Dr. diagnosed for me. It is not invasive and worked well.
I was diagnosed for 4 years. After getting range of motion back, it did move to other shoulder. more therapy. Then went to hand of original shoulder. I was misdiagnosed with RA, but flew to orthopedic group in another state and diagnosed with RSD in 1 minute by ortho hand specialist.
Besides physical therapy, something that helped me was I always did a light massage therapy-full body for an hour before the physical therapy. I did it on my own and believe that is why I don't have skin sensitivity. I also did therapy at home. My therapist had me get 5-6 plastic bowls and put cotton balls, rice, coffee grounds, pieces of cloth, beans and run my hands,feet etc thru the different textures. I don't have allodoynia-sensitivity to wind, clothes etc.
Please let us know how things are going. One of your new friends, loretta

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I am paying close attention to any/all complaints he has about stiffness, lack of range of motion, etc. We initially suspected CRPS spreading when they diagnosed frozen shoulder and I was very surprised that the ortho didn't mention it. I argued strongly for him to go to HBOT treatments but the only place in our state (OK) that has hard-sided chambers is a 2-hour drive each way. And I'm happy to do that and can afford the treatments (thank God) but he doesn't want to take the time from work or pay the money if they can't promise he'll improve ("only" an 80% chance!). At the next sign of spreading, I am going to insist.

So far I'm counting us among the lucky who are battling this condition. He has never had allydonia. I have always participated in his at-home therapy and I think that's played a large part. Compared to others who post here, his symptoms are very minor and we have no business complaining about anything!

Thanks for your insights. I appreciate them all, even if they're not exactly what I want to hear. It keeps me focused.

just because his symptoms are minor doesnt mean he shouldnt complain here. were here to help.. mine isnt as severe. but they are going to get more severe as things progress.. this is like a family.. dont be afraid to ask questions.. by the way, its great that your supportive like you are.. and be very insistant that he gets checked. the longer span it goes, the worse it could be. we all know that..your new friend barbara

No matter what level of pain etc one has it still impacts their life greatly and you deserve support too.
To Nikki who dx you with RSD? What type of tests have you had to rule out other conditions? Yes it could be RSD or it could be another condition or it could be rsd and something else. The extreme fatigue and pain everywhere also would make me think of fibromyalgia. I hope you are under care of docs to get treatment asap