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Originally Posted by lisa6262
I'm back. Wow. Such a world of info here. As noted before my RSD started after surgery on my foot. I can't take pain meds and I have severe pain in my foot as well as sciatica. Up to now I continue to see my pt (some days I think he helps and others I feel worse). I have had 3 nerve blocks (very little relief). I have just been approved for a spinal cord stim. I see a lot of mixed reviews on this site. Of course, my pain mgmt clinic are all rosy and happy about the SCS. I should have my trial implant late next week. Until then, I will continue researching. Trying to teach others, family and friends about this disease is not easy. However, I did join RSDSA and have downloaded info to allow others time to do their own research when I am not around. My family (with the exception of my husband) is very skeptical about the SCS. Thank you all for your support. Sometimes I feel as though I dwell on RSD too much...although pain makes you think about it all the time.
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Hi Lisa, your are right, there is a lot of good information here, as well as compassion and comfort from understanding friends also with RSD.
I also got RSD following surgery. Although I was diagnosed for 4 years, I immediately was put under a Rehab Dr. and doing physical therapy for frozen shoulder. I also decided to do massage therapy just before each pt. I believe that helped a lot. About a year of this, was able to have almost all of range of motion. About 6 months into therapy, they had me see an ortho surgeon who wanted to perform surgery-I said no. My therapist told me just before we moved to Arizona, that it might go to other shoulder. I thought that strange as I only had surgery on the left side.
After a year or so of remission, it did move to other shoulder. more therapy. another remission. While water skiing, felt a nerve pull in hand.
Dianosed with Rheumatoid Arthritis although test were negative. I knew the Doc was wrong so flew from Arizona back to Oregon to a sports injury group. The Hand Ortho knew in 1 minute it was RSD. Had tests and started therapy and Tens Unit. Came back to Oregon and found a good neuro and hand ortho for more therapy. Did get my fingers fully mobile so have a claw hand. But at least, can type, cut my own food, etc.
Personally after much research, I wouldn't have a SCS. I have heard too many stories of it making the condition worse and spread. I do have full body now-after 9 years from beginning. It's now 15 years and have it internally now. It is not easy, but I have learned as much as I can, and have found a wonderful Dr. who is my pain management Dr. He is a psych. neuro. ortho. internist and pharmacologist. I'm actually better than when I found him 6 years ago, especially emotionally and mentally. and pain wise. The flares are bad, but I've learned a lot of coping skills and take an positive approach.
The support here and kindness has been so wonderful. I also belong to a local support group. If you go to RSDSA and put in your zip code, you'll get the closest support group with phone number of leader.
Also rsdrx.com puzzles list is an excellent site for information. The Dr. practiced 40 years in Florida-RSD. The 160 puzzles or question are excellent with his answers.
Are you allergic to the pain meds? My Dr. has me on a mixture of meds, some of which work for nerve pain- like Cymbalta. Seroquel XR he did a 200 person study and put me in it-found it worked well for some people for sleeping. I sleep 10 hours straight. Anti-anxiety med helps calm us-I take lorazepam 1 mg 4 a day=used to be twice that much. I take vicodin for pain-
4 per day= used to be 6, but when I started sleeping so well, my pain level went down. Take 2 blood pressure meds, as RSD is an autonomic condition.
Welcome again, and hope we can support you. One of your new friends, loretta with big hugs
