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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Deb and Chris,
Let’s see if I can answer all of your questions. I was diagnosed with RSD/CRPS on June 1, 2007 after I broke the 5th metatarsal in my right foot (technically a Jones fracture). I was non-weight bearing after the fall and developed the condition right along with the break but just didn’t know it until about 2 months later when my orthopedic doctor diagnosed it. I was lucky he did it so quickly. I have not walked since then due to the pain but the bone has healed. I’ve tried many courses of treatment including: loritab, lyrica, cymbalta, hytrin, topimax, amrix, fentora, fentanyl patches, lidoderm patches, spinal cord stimulator implant, physical therapy (still do this daily at home), acupuncture, hyperbaric treatments (60 dives), a tens unit and most importantly a positive attitude.

I applied for SSD on my own and was approved on my first pass. They asked me to go for both a physical and mental evaluation. I asked why and they stated because of my responses on the online application. I provided them with my medical records and they waived my going for the exams. I found the social security people to be both professional and friendly and more than willing to be of assistance. When I was confronted with one person on the phone who was less than friendly I just hung up and called back – luckily I had not given any contact information at that point – and I connected with someone the next time who was much more helpful.

Regarding the acupuncture – I had needles all over my body. They were mainly on my right leg – which is where my RSD is. They did help some for the pain but where she mainly helped me was in the area of sleep. Since I went to her I have been able to sleep almost 5 hours a night. Before that I never slept due to the pain. I still have almost the same amount of pain (the acupuncture seemed to help me during and after the sessions but not long term for the pain) but has helped me out long term regarding sleep. I am unable to afford to continue the sessions for acupuncture as I am a work comp case and they would not pay for acupuncture but I would recommend that anyone who is able to afford it – and who has an open mind and access to a reputable and reliable eastern physician give it a try. It certainly helped me.

Lindkaye… I did not give SS my acupuncture records – but if it would help your case – then you should consider doing so. I had over 200 pages without my acupuncture records so there was no need for me to add them. If you need the documentation and substance from another physician documenting your condition then by all means you should include them. The more evidence you provide – the more likely it is that you will “pass” on your first try.

I hope that I answered everyone’s questions… if not, please let me know.

Lissa
I have CRPS in my knee from a car accident - can never have a knee replacement. We tried accpuncture before I was diagnosed (along with many other things), and i would not let the therapist put the needles in the area of the burning pain. It did seemed to lessen the pain somewhat. However, the therapist kept wanting to put them in the center of the nerve pathway as she was sure it would work to get rid of the pain. I finallly agreed - wrong - I was back to square one, in fact worse than ever. When finally diagnosed, I got onto Clonazepam and lyrica and water therapy and it has gradually improved - dropped any of these for even one day and I know it. Laura.





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