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Old 04-29-2012, 08:54 AM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
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Everyone is different when it comes to what they can do to help relieve the pain. For me it is mostly a lot of little things that add up to enough that I can continue. tDCS and the TENS unit that I use are the two biggest things that have given me significant relief. As for the rest, I will list them and if any work for you then that's great:

1. Hot baths. I started doing these when it was just my ankle and they do take the edge off. Now that I also have RSD in my upper body (everything between my waist and neck including both arms/hands) the baths are even more crucial to my daily routine. A couple months ago not I actually started taking TWO baths a day and this has turned out to be a very good idea.

2. Ultrasound Heat Therapy. I got an at home portable unit on amazon.com and I use this after each of my baths. I started with just my ankle as that was the initial site of the RSD and was by far the worst. Now I tend to target the other areas that I tend to get flares more often in addition to the ankle. It's weird because the therapy itself doesn't feel like I get any sort of immediate relief but I noticed after I started that it seemed to EXTEND the relief from the other stuff (ie...it took a longer time for the pain levels to rise to unbearable levels).

3. TENS unit. I mentioned this above. I mostly use this on my ankle and wear it all day. I run the wires down my pants leg and do 30-60 minute treatments on a contant setting and increasing the levels as I need to. Then I leave the machine turned off (bu still keep in on me) and just turn it back on when the pain levels start to rise again. I also always have it on when I am doing my physical therapy. This machine was the #1 reason I was able to do my physical therapy and get out of the wheelchair (started it long before I ever heard of tDCS).

4. Heating Pads/Space Heater. I use the space heater when I am sitting in the same place for a long time (which hopefully won't be often now that I have become more active and mobile). I sit next to it and make sure that I am kept warm. The heating pads are great and I have become a huge fan of the generic ones you can get at any pharmacy (like Thermacare of the generic sticky ones). The reason I like them so much is that they are very light weight and they allow me to really target the bad areas. They are a must have item for me when I get a flare. I also have a microwaveable one that I can wrap around my ankle if I need to...but it is heavy so it's a fine line between it helping and it hurting. I also have an electric heating pad that I actually really like...but it obviously only works when you stay in one spot because it has to be plugged in.

5. Lidoderm Patches. These are trickly. They help a little...but sometimes a little makes a big difference between the pain being tolerable and it being so bad you can't function or even see straight. The best way to use these is to not put them in the same spot over day and I find that they help more when I use them with a heating pad. I only use them for flares now and that seems to work out the best for me vs when I was wearing them every day on my ankle.

6. Physical Therapy. I know this is somewhat counter intuitive but it really does help me. Hurts like all get out to do it but I have gotten a lot of function back and over time the pain really does ease a bit. Immobilization and guarding are some of the worst things you can do for RSD so keeping yourself moving is VERY important in that sense. The PT also helped me handle a lot of the stress, kept me focused on a goal of getting better, and helped keep me from falling into an endless pit of depression. The PT and my drive to do it EVERY DAY was something that I could control. So much of this condition is out of our control, as are the other things in life that seem to want to rip us down, but doing the PT, as well as all the other therapies, these were in MY control and I really let myself get VERY focused on all that. It helped me through some pretty rough times.

7. Desensitization. God how I hated this but I made myself do it so that I could tolerate wearing clothing on my RSD areas. Wearing normal clothes made me FEEL better. And as painful as the process was, it did help me to take the edge off the pain and to normalize the sensations. I still have the extreme sensitivity but it is BETTER than it was for a long time last year before I did this.

I really am so very sorry for all that you are going through. Meds were not much help to me either...the lyrica helped a little but in the end the combo of meds they had me on actually made me much worse so I went off of all of them and I haven't gone back on any of the pain meds. Now the only medications I have are the lidoderm patches and the clonidine patches that I wear to help with my dizziness, blurry vision, and some of the other wacky RSD symptoms I developed last year.

If you find that you are really having a rough time, have you considered seeing a therapist? I know many RSD patients find they need the help of a good therapist to deal with everything that is going on. I feel very lucky that I have had such a stong support group in my family and friends and a very stubborn streak of my own to help me cope...but I wasn't dealing with the sort of personal tragedy that you have had to experience on top of everything else. I know it has helped me a lot to have this place to come to where I can vent and express my frustrations with people who really get it because they live with the same things.
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