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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 having pain in the bunion and metatarsal area of my left foot. I went to a physical therapist in a major teaching hospital for help. After about 3 sessions with him, my foot felt better and I was hopeful for a resolution to my foot problem. However, after that my foot pain returned in areas that had never hurt before and I also had burning pain. He had no answers as to why my pain had returned. Finally, I realized what had happened. He had been using a steel tool on my foot (a technique known as instrument assisted soft tissue mobilization - IASTM) to break up adhesions/restrictions. It caused my RSD to flare. I was never asked if I had medical problems that might rule out the use of this harsh therapy. I am now much worse off than before I started physical therapy and angry at the supposed medical care I received and my insurance was charged for.
Of course, I stopped seeing this therapist when I realized what had happened. I have an appointment to see an ankle/foot orthopedist next Thursday. In the meantime I have been taking ibuprofen to try to reduce inflammation, using magnesium lotion on foot, taking vitamin C, and taking nortriptyline before bedtime. Sometimes also relying on generic Ambien for sleep. Does anyone have any suggestions as to what else I can do to reduce pain until I can see the doctor? Of course, I am trying to walk as little as possible as it hurts a lot to walk. Can anyone help me? I would greatly appreciate it!! |
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#2 | |||
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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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#3 | |||
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Co-Administrator
Community Support Team
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Didn't PT do assessment/ask about other conditions before treatment?
I had many PT sessions for repetitive injuries , it is always important to watch and ask questions about any treatment/therapies being used. And if anything is a concern speak up, don't be shy , it is your body.
__________________
Search the NeuroTalk forums - . |
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#4 | |||
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I got no treatment for RSD back then, just the PT (there was nothing else they could do at the time as they had no clue what was wrong with me at that point) and by the time I was through my upper legs were thinner than my calves - and I have slim calves. Yeah... those days were awful. But my point is, they can adapt your treatment during the treatment too, if YOU indicate it is not do-able. Later of course they found out I had RSD but by that point it was too late basically to revert the disease in my legs as it had become chronic and disabling.
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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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#5 | ||
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Junior Member
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I have had manual "hands-on "(no tool) PT that was uncomfortable but effective and had no after problems. I trusted this physical therapist in the beginning.
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#6 | ||
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Junior Member
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I do keep thinking that above all physical therapy should do NO harm. I am still angry at the abuse/pain he caused my foot and wanted to warn others with RSD about IASTM. |
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#7 | |||
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Thanks for the warning, but remember just about *anything* can cause RSD to flare-up so you can't say for sure it was this, even though it is likely. RSD is so fickle! And trust me, I know! I've had this for over 21 years now.
__________________
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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Senior Member
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Thank you for the warning. I have definitely learned over the years with RSD that I have to ask questions and get specifics when it comes to ANY kind of therapy or treatment. My first PT used STIM and ICE on me (that was bad...very very bad) and at my next session I told her how bad it got and that I had learned ice was bad for RSD...so we did STIM and HEAT instead plus added ultrasound heat therapy at the beginning of the session. Most Physical Therapists I have worked with are very willing to discuss therapies and now that I know more about my condition (the incident mentioned above was right after I got the diagnosis)...I am better able to gauge what I can handle. I would never let someone use a metal tool on me for PT because aside from the fact that the pressure could hurt...metal gets COLD! But in the beginning I wouldn't have known that. Desensitization therapy worked wonders though...despite its being very painful to go through. It helped to normalize sensations and even though I am still VERY sensitive to the touch...I can now tolerate a lot more than I could before.
Thank you for sharing your experience. I wish it were easier so that once we know we have RSD there would just be a list of things that are ok or not...but we're all different and it has taken me YEARS to learn my limits and how to balance things (ie...is a particular activity WORTH the pain is will cause...what else will I have to NOT do if I do this one things, etc). And I'm still learning as the condition changes, spreads, and worsens. Mostly I have learned that no one knows my body like me and I HAVE to speak up for myself because the people around me aren't psychic. I have a hard time speaking up for myself though...so it's something I have to constantly work on. |
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#9 | ||
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Junior Member
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I appreciated your kind, empathetic response. I am also having severe insomnia, so it is sometimes hard to be as assertive as I need to be when sleep deprived. I need to work on that also. |
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#10 | |||
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But something like that you need to discuss with your doctor. ![]()
__________________
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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