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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Old 09-26-2013, 03:57 PM #1
Tanner26 Tanner26 is offline
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Default Came out of remission

Hi Everyone. This is my first posting. I was diagnosed with bilateral RSD in my feet about 3 years ago. Cannot identify any source of injury and my overall pain level was minor relative to other RSD patients. Soon after going on Lyrica - 200 mg/day (and nothing else), my left foot was almost pain free and my right foot went into remission. About 2 months ago, my R foot came out of remission and is not responding to higher doses of Lyrica (now up to 600 mg/day). I am waiting for a compounded cream to be delivered and insurance company denied a Rx for Neudexta. Pain level is still pretty low, again relative to other patients. I have moderate swelling and just started physical therapy. Therapist is using TENS unit and another electrical nerve stimulation (I don't know name). After two PT sessions, I am not at all feeling the current at maximum levels from either unit. I understand that my relatively minor RSD could get worse and/or spread. I am very curious why I am not feeling stimulus. My R foot is measuring about 4 1/2 cm larger than my L foot. While the swelling may be interfering with the current, I don't think it is enough to block it entirely. Any thoughts?
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RSD ME (09-26-2013)

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Old 09-26-2013, 04:37 PM #2
Allanira Allanira is offline
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DO NOT let them use ice. I have a high pain threshold thanks to this disease. You might want to discuss with your drs about a different med to use. Also try epsom salt soaks. They are wonderful. It helps with my inflammation and then I can crash with a little lower pain. I have it in left knee going down to my foot. Makes it hard let me tell you. I haven't been in remission per say. I have had this for almostm10 yrs. Some days are good some days are bad. Look up the different treatments and talk to your drs. All of you might come up with a different game plan that might work. Remember also what works for 1 doesnt another and heat is good ice is bad. Keep positive as much as possible. Also I think it was Vrae or Zookester that suggested Arnica cream. Keep moving as much as you can. With rsd its the old adage use it or loose it. Its real for us.
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Old 09-26-2013, 05:52 PM #3
RSD ME RSD ME is offline
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Hi Tanner,
Welcome.
Sorry you have this problem.
Sometimes I loose feeling in my hands where my rsd is. Especially in the morning. Maybe your rsd is interferring with the current because of the inflammation caused by it. I think thats why I have numbing sometimes in my hands.
And they put ice on me at pt after sessions before heating pad for quite sometime. That was a big mistake.
Caused more numbness for me and hurt more and more as time went on. I finally saw on website that ice was bad and told them to stop.
Maybe your dr can prescribe meds for you for nerve problems and pain. PM doctors are great for this. They are very helpful as well as neurologists. I hope you feel better and soon. And yes, exercise as much as you can without overdoing it. Take care.
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Old 10-01-2013, 01:06 AM #4
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Hi Tanner, welcome to the forum. I had a tens unit, still do but after using it for a couple of years (can't remember because it's been a long time since I used it) it was not helpful. It was more annoying to the pain. I was supposed to use it on my tight arm, neck, shoulder, but it never seemed to do anything for me. Back then, my pain was such, that nothing seemed to put advent in it. I've had better management the last few years, so I actually am able to tell when things do and don't work now. I too, like Renee mentioned, have a lot of numbness in my hands, but I always felt the TENS unit. Make sure you tell the PT what you are or are not feeling. To alleviate numbness at night, it used yo wake me up, I place a soft squishy pillow on either side of me. Just enough support to lay me lower arm and hand on, so they are elevated. Laying them at my side causes more swelling and numbness, so I elevate them gently. Works wonders. Takes up a lot of room in the bed though. My husband calls it my fort. LOL. I have definitely become the leading role in the princess and the pea. I need the pillows to be really soft and placed just right, so that my arm is only elevated from the lower area and hands, not the upper arm, that is uncomfortable and causes soft tissue pain problems in the AM, like a strain.

I use Arnica gel a lot. It does nothing for the RSD, it's a very cooling gel, when it's applied, so it can be difficult to get through application, but it helps so soft tissue issues, strains, pulls, aches. Does nothing for the RSD burn, but if you have peripheral aches and pains it is great. I used it for tendonitis pain for years, before I got RSD. For me, if I do any repetitive movement, reach to high up, have a stumble, I reach for the arnica rather than adding ibuprofen or Tylenol to the meds I already take. Ask your PT if they think it would be helpful for the swelling in your foot. If you want to try it, Whole Foods has it private labeled in their 365 line. Surprising good value, compared to anyone else who manufactures or packages it.

Good luck and I hope you find some relief.
Sylvia
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