Thread: RSD Need help
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Old 09-23-2013, 09:08 PM
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
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Welcome TJ,

I just joined a few days ago, but already have had so much helpful advice from so many kind people here. I have had RSD for over 2 years and it is also getting worse and spreading. I am 48 and it is really scary. My neurologist helped with prednisone for a few months during the first few months and I was sent to a pain management doctor who gave me pain meds, and nerve meds as well as 8 nerveblocks in the first few months. I check in with my neurologist every few months, but she said there is not much more she can do. I have been seeing my pain management dr ever since I was diagnosed with RSD over 2 years ago. I am still taking my pain meds. I had to increase over the first year, but have been trying not to increase anymore if I can help it. The medication helps, but some days are worse than others I just stay in bed those days. When my pain seemed to be all over, I went back to my neurologist and she said that it seemed that I had fibromalagia on top of RSD. That sometimes happens when you have RSD. The meds I already take for RSD are also helpful for fibro so I've just continued taking them (and was told I could increase some a little if I needed too). My pain management dr said to also exercise as much as possible. Water aquatherapy for arthritic people ( which I'm also) helps if you can find a place with warm enough water. Maybe your doctor can also prescribe physical therapy for you. I took 6 months of that in the beginning until it no longer helped. You just don't want to drive while taking all those meds. The cold weather is rough on rsd and stay away from ice. Walks are helpful to me if the weather is warm and if there is no ice on the ground to slip on. That's how I got this stinking disease in the first place. Broke my wrist. I also see a psychiatrist who prescribes antidepressents and antianxiety meds to help me deal with this. Over time RSD has had a way of causing me alot of dental problems, limited movement and swelling and change of color in limbs and also then opened up the the world of fibromyalgia to me. I'm here is you need a friend. And everyone on the RSD forum is also great. Check it out. It has helped me immensely to talk to people who are going through this. Plus, maybe I can give back by trying to help someone too. I hope I helped. Soft hugs and prayers. There are good days and bad, so just take one day at a time. Take good care of yourself. PS - I recently tried accupunture and it seemed to make my rsd spread and the needles hurt alot. I didn't find it helpful at all. Also other surgeries or breaks can sometimes make rsd spread. Unfortunately, I had several abdominal surgeries during my RSD time and had spreads from them. Also lost a tooth from a failed root canal. Had no spread from that, but had dry sockets so pm let dentist provide extra pain meds for a few weeks. Alot of cracked teeth because of meds too. They dry mouth which cause brittle teeth. And RSD has caused thinning of my right hip bone. (ospeopenia) Hurts too. Now my stomach is upset. Maybe the meds. I have to take them for pain, but there are side affects. They cause memory loss too. I'm seeing my dr tomorrow about the stomach pain. (Have had endometriosis and hysterectomy last year too). I feel like I get sicker easier with RSD. Well, anyway, the drs said that exercise and meds are about all they can do for the spread and pain. My pain management dr suggested a neursostimulator during the first few years, but my neurologist and gp did not think it was a good idea. Besides I was recovering from abdominal surgeries, so I wasn't up for it anyway. The threat of infection from it could make my RSD worse, so I didn't do it. And apparently after two years, it really isn't effective anymore if at all. Maybe try a pain management doctor and psychologist or phsyciatrist (if you want) to help. That helps me as well as my friends here, my family and alot of praying , I'm hoping to go into remission some day. I hope and pray the same for you. Soft hugs to you.
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