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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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Junior Member
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i was diagnosed 4 weeks after symptoms (from the trauma of a bicycle accident) and will start PT next week. Anyone have this type of start?
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"Thanks for this!" says: | Dew58 (04-17-2009) |
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#2 | |||
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Co-Administrator
Community Support Team
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What was the injury and your symptoms from the crash?
Head, shoulder, arms - upper body injury? or lower body - knee, hip, ankle. etc Just want to be sure in case of any possible other diagnoses, or has all other dx been ruled out already to your satisfaction?
__________________
Search the NeuroTalk forums - . |
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#3 | |||
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Magnate
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I spent almost 4 years in Physical Therapy. First for my back, then my Thoracic Outlet and Fibro and then my RSD.
I think what is most important is how much the Physical Therapist know about RSD. My first two Physical Therapist diagnosed my TOS after they got me walking again from my back, then they helped do as much as they could for the TOS but I later needed surgery. I then went back into PT for my RSD and Fibro. I found a husband and wife team that was the best. They didn't make me lift weights or do any kind of exercise. They did massages, heat therapy, and stretched my fingers and hands gently. I credit them for helping to save my life along with my PCP. They got me as far as they could. Make sure it's not hard core PT. I finally got to where I could walk and do exercises myself. I now do the treadmill and other exercises. I also take walks. It wasn't an overnight thing but it sure was worth the time it took to get me better. Good luck with the PT. I do want to say too that I consider myself in remission. Ada |
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"Thanks for this!" says: | loretta (04-18-2009) |
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#4 | ||
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Junior Member
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Quote:
all other (clot, fractures) ruled out w x-rays, ultrasound etc have swelling in ankle and foot and to lesser degree around my knee pain in left foot small toe, left side of foot and in the knee |
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#5 | ||
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Senior Member
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Hi fewdalord,
I started physical therapy and massage therapy real soon after surgery, The surgery was removal of two tumors in breast area and lymph glands. Following day arm doubled in size-pain etc. Sent to Rehab Dr. sent to p.t. It was torture, but stayed with it. I paid for an hour of massage as felt that would move it along faster and am glad it did. Stayed with it over a year and had nearly full range of motion from frozen shoulder, shooting pains etc.All was good, had the massage just prior to going to p.t. Was good for several months maybe a year. We moved from Oregon to AZ. They told me before leaving it's possible for it to move to the other should. Thought that sounded strange. Then it did moveto other shoulder. Started therapy and massage again. Wasn't as long this time. Back to tennis, water siiing etc.While water skiing at least a year later felt pull in my hand, Swelling, pain, Dr. said Rheu. arthritis. Didn't sound right so went toOregon ortho hand doc. Correctly diagnosed me in 1 min. followed up by tests in hospital. Started therapy , tens unit, and came back to AZ and got neurologist, more tests, meds, ortho hand Dr for third opinion and back into therapy, massage. Only got partial use of hand. It's frozen like a claw. Was frozen like a straight board. moved to other hand, ten feet and legs. Went to another neuro , psychiatrist, pharmacologist 3 in 1 doc that is very very good. That's when I found out I really got the RSD after the breast surgery. But I know i was in remission two times after the pt and massage. About a year each. Have full body and still moving. I swimming. This good Dr. saved my feet, they were turning upward curl and he gave me exercises in our pool, needs to e 86 degrees, not a problem in Arizona. My toes now touch the ground, and I do dailey stretching, eat good, use natural foods and vitamins with anti-oxidants, Anything to keep moving and circulation going.I have been tapering off on some drugs, but still need some. To be calm is so important. I use happy music, my kitty, good humor, reading positive attitude, meditation, visualization of beaches etc. We used to travel a lot. It's a bad thing, but I'm grateful for my life, family and friends. It's an automic disorder, so have high blood pressure and low blood pressure. Passed out from low blood pressure one morning, nearly died. Was out over an hour and my husband was upstairs. Couldn't get up, so crawled on stomach to hit on the door. paramedics could find a pulse and really scared my husband, but I was alive and stayed in icu 4 days. A friend here has had that happen 4 times. my pressure was 60/40 The pt. is painful for frozen shoulder and probably for any rsd, like my frozen hand, but ssoooooooo important to get use of limb back. Not give up, but don't let them get too aggressive either. Have they had experience with RSD? Mine did. I was strapped down and took pain meds before therapy and our daughter drove me. Read as much as you can, READ READ talk to others, support group in town helps a lot. Blocks help some and make others worse, we are all different. It was 4 years before I was diagnosed so didn't have blocks and don't I would. I am going to try HBOT when my Dr. gets his two new clinics finished. Circulation is a big problem for us and it promotes healing. A couple I know bought their own units for their home dives. It took me a long time to mentally emotionally adjust to full body and the pain etc. The good Drs. helped me adjust my mind and have some good days and some down days. Miss the old days, but grateful for the present. It could be worse. So many in the world going through tough times. Hope things go well with your treatment and be sure and ask lots of questions. Everyone is different and responds differently. Take care, loretta |
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#6 | ||
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Member
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Be sure to ask your PT what they know about RSD/CRPS? Have they treated anyone with it and where was the RSD/CRPS? My PT told me that for treating RSD/CRPS it's not a no pain no gain attitude. When it starts to hurt you stop and the question needs to be asked can another approach be taken example fewer reps or different technique.
The condition is different for each one of us and the affectiveness of the treatment is different for all of us. We all have similar heart muscles. Therefore Western Medicine can treat heart conditions with some success. Every person's nervous system is different and Western Medicine has a lot to learn about the human nervous system. More money is spent on curing things that WM has a chance to make a difference in many many lives. There is no cure for RSD there are treatment that help manage the pain. When it is caught early, it sounds like your has been, it can be put into a stop or remission. Be active in your care and don't be affraid to ask quetions and if something isn't working speak up and communicate with your doctor and PT. I wish you the best of luck wit PT and manageing your pain. Take care, Sherrie |
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#7 | |||
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Member
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In whatever stage you are in, whatever your start is, PT alone won't help you. You need medical treatment along with it or it will do absolutely no good!
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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#8 | ||
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Junior Member
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what medical treAtment in addition to PT?
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#9 | |||
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Member
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Are you seeing a doctor right now? What kind? What treatment was prescribed for you next to the PT?
Medication? Nerve blocks? Infusions?
__________________
All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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#10 | ||
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Junior Member
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JUST PT Now
pain is only infrequent for now but taking cymbalta already for dp so maybe this tamps down any pain |
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