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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

OH - you mention the doctor said you Mom should get physical therapy. Again, I have had therapy here around home (Columbus, OH, area) - and they have made me MUCH worse. However - when Dr. Dews hooked me up with the therapists at Cleveland Clinic - they knew not to push RSD people to the point of pain - I actually began to see improvement in my frozen shoulder etc.

Cleveland Clinic therapists have a lot of experience working with RSD people because of Stanton-Hicks.

With your Mom being in NE Ohio - I would think it would at least be worth a try going to Clev Clinic.

Having RSD is not going to be easy for your Mom. It won't be easy for you to watch her have either. It's so hard to describe. I do "ok" as I don't take any narcotics (not that I wouldn't like to take something - but they just didn't help) and I do still work. But I think of myself as one fall away from a wheelchair, losing my job, my home, my everything. It's like living life on the edge of the Grand Canyon... and you never know when a big gust of wind is going to come along and blow you over the edge. It may never blow you over, or it may be in the next minute.

If your Mom is not on Topamax, Lyrica, or Cymbalta, I would think one of those should help. I take Topamax, and it takes the edge off. I am glad I have high blood pressure, as a couple blood pressure meds help a LOT with the redness, and the swelling. Lidoderm patches help get me through the day too.

I really think Dr. Dews can help. But, caution your Mom that it often takes trying MANY medications to find the right combination, and the right doses. She will want to give up, but needs to hang in there and give the Dr. a chance to help. Many Dr.'s do not want RSD patients. That is one thing I liked about Dr. Dews - she seemed to really understand and want to help.

Best of luck to your Mom!
Not having health insurance will be an adventure to optimum care. Not only are doctors reluctant to take you as patients - but the medications that help us are terribly expensive.

As an example, and this is just from memory, so I could be way off... Lidoderm patches.. I use 3 a day. I get them from 90 day mail in through my insurance. I pay $40 a month - so $120. BUT... the insurance pays something like $1600. I think my Topamax is nearly $1000 for 3 months. I think Lyrica is even more expensive. Some drug companies have programs for people without insurance to get the medications at reduced or no cost.

I believe traditional opiates are much less expensive. I do have a script on hand if I need it for vicodin and it costs me less than my co-pay because it is so inexpensive.

Physical and Occupational therapy can be terribly expensive also. I recently went to Ohio State for a couple visits to be shown the proper way to use my TENS unit. Just the base workup on the first visit cost me nearly $500. I thought my insurance covered physical therapy - but came to find out that my employer had me down for the wrong coverage level - and the evaluation and 2 visits cost me over $800...

She may be able to get into some of the studies they have going and have her medications covered that way also. The way I found out about Dr. Dews was from another woman with RSD. She was in one of their RSD research studies. They were working on developing an oral Ketamine pill without side effects for RSD. I lost track of the other woman, and do not know what progress they made.

If your parents are financially able, I would try to hit the RSD hard for a few months or the first year, with blocks, therapy and meds. Then, she may be able to ease off, or go to regular opiates that are less expensive for maintenance.

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