RSD and EDS

I am a 15 year old girl who was diagnosed with EDS hypermobility type a year ago. I have had two surgeries on my right foot and after them I have developed RSD. I have only had it for a month but I am REALLY scared that it is going to spread to other parts of my body. I have a doctor appointment today and he is going to do a nerve block in my back to numb my foot. I am really new to all of this so I don't really know how successful it is and how long it works for. He also wants me to do an intense physical therapy program. But, I have read that people with EDS and RSD should not do physical therapy programs because it makes their conditions worse. I was just wondering if there is anyone with EDS and RSD that has done a physical therapy program and what are your outcomes from it? Also if there is anyone who has a good doctor or hospital that they have been to for this please let me know! It doesn't matter where it is because my family is willing to go wherever to get relief from this. If anyone has anything that could help PLEASE let me know, I am desperate for any help at all!

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Hey there,

My daughter had toe surgery & developed RSD. If I'm not mistaken, she massaged it quite a bit, soaked it w/ epsom salt, & made sure to move it, etc.. She didn't do physical therapy, but thankfully it's pretty much resolved except for some sensitivity. You had foot surgery though, so it was a bigger surgery & may require therapy.

If I were you & your family, I would go to doctors who specialize in Ehlers-Danlos Syndrome. Dr. Clair Francomano comes highly recommended & is in Baltimore, MD. You could call her office & either plan to see her or they could possibly recommend someone for you.

Wishing you the best ~

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I don't know much about EDS but physical therapy is definitely recommended for RSD. The thing about RSD is you need to make sure you get someone with experience with RSD. You want to regain the use of that limb. There are several young people with RSD on this site, so you are not alone.

I have had RSD in left arm for almost 5 years after a broken wrist from a car accident. I am at a stable point where I can live a normal life with daily medication. I was lucky enough to see a doctor about another problem that recognized the signs of RSD when I asked him some questions about pain and healing. I was diagnosed at 10 weeks. I was enrolled into a Pain Management Clinic at the 4 month mark.

You are in a good situation and have 2 things working towards you getting a handle on your RSD.
1) You are starting treatment early. Most RSDers spend 5 or more years getting a diagnosis and have been to an average of 5 or more doctors.
2) Rate of remission are highest for young people, the theory is it may have something to do with growth hormones.

One of the first thing you should work on is desensitizing the RSD area, which isn't always easy. There are several ways of doing this. Some employ using different materials that you expose your RSD area to. I used touch to desensitize my arm. I would stroke my arm several times a day. As it progressed, I increased the pressure and was able to work up to scratching and massaging lotion on to my arm. I can not wear any tight or restrictive cuffs on my RSD arm, but I can stand to have clothing touch my arm. I only have issues with clothing during flares and period of high pain.

About the lumbar block, it can be very helpful. Here is a link to the RSD Foundation website (http://www.rsdfoundation.org/en/en_clinical_practice_guidelines.html). At the end of the Clinical Practice Guidelines are videos of various types of blocks (stellate ganglion and lumbar). This website can answer many of your questions. I must add that the block may not help, there many of us that it does not help. Personally, I have had great success with blocks. I have had 7 blocks over a period of 2 years. I remember realizing that my hand was warm after the last block, it had been cold for several years. It was warm down to the bone and it was a glorious feeling.

Here are some good websites to go to:
rsdfoundation.org
rsds.org
rsdhope.org and
rsdrx.com

I highly recommend you go to RSDS.org and download some of the information to share with others, here is a sample of some of the items available. I would suggest you carry information with you because there are many medical personnel that have never heard of RSD or CRPS (which is the newer name). I have given all my doctors information and a copy of the Hospital Protocol Handout. I also find it is easier to hand someone printed information because this is such a complex disorder that people often look at you like you are nuts when describing it. somehow they believe the printed word more than the voice of experience.

Helping Children/Youth With CRPS Succeed in School
A guide for teachers, parents, and school administrators on accommodating the special needs of children with CRPS.

Recognizing, Understanding, and Treating CRPS
Recently revised, this brochure details the signs and symptoms of CRPS and presents some treatment options.

Treating Complex Regional Pain Syndrome: A Guide for Therapy
A new brochure on treating CRPS from an occupational therapist.

Hospital Protocols for the CRPS patient: Handle With Care!
A guide for patients and hospital staff to manage people with CRPS during their stay in the hospital.

Reta

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Hi Sammie, I developed RSD in 2000 after a foot surgery also. Unfortunately I didn't get diagnosed for 2 1/2 yrs.

I do know someone whose son got RSD and she took him to Boston for intense PT. He came back in remission and has been since. That was several years ago. If you want me to try and contact her to see what the doctor's name is I will. I have heard of several others who have gone through this type program with good results, mostly young people like you.

Remember not to put ice on it, not good for RSD. I recommend you go to www.rsdrx.com and look at RSD Puzzles for a question/answer series. Dr. Hooshmand was my doctor before he retired. It sounds like your doc is on the right track.

Prayers for the best,

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I have EDS and had to have complete ankle reconstruction on my right ankle due to my ligaments having stretched so badly. I had and still have RSD in that ankle. My surgery was in 12/09. I do a topical anti inflammatory gel, epsom salt soaks and a massage therapist I see once a week. Its mostly pain management for me as mine I've been told is somewhat mild, but physical therapy puts too much stress on my other ligaments and tendons. I am trying to de sensitize the area but it is slow going. I am supposed to go in in two weeks for a set of novicaine and cortisone injections into the sheaths covering my tendons to see if it helps.

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