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 10-26-2018, 04:51 PM #1
survnrsd2008 survnrsd2008 is offline
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survnrsd2008 survnrsd2008 is offline
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Confused very frustrated

I am really very frustrated with the system. Is anyone dealing with workers compensation case? I have been dealing with the system into 11 years now and I am literally back peddling with my CRPS type ll because of lack of medical care and knowledge. I am seeking advice on how your coping with your daily life because of denied medication and care? MY husband had to retire to take care of me full time because I can't be left alone due to brain shudders and falling that this CRPS creates.
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Old 10-26-2018, 07:01 PM #2
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I have been dealing with work comp for 9 years. It's a terrible system and I am hoping to be done with it soon. I have dealt with it honestly by using my regular insurance when work comp started denying care and not approving anything. And even that's not sunshine and roses because they no longer cover the treatment that has helped me the most. The most important thing is to find a good doctor who understands CRPS and is willing to work with you to find the right treatments (not just what THEY want to do).

I, unfortunately, never responded well to most medications and didn't get hardly any relief from them. That left me on my own a lot of the time to find stuff that would help...no matter how small...every little bit of relief helped make life bearable. So here are a few things I found on my own to help.

1. Heat patches. Over the counter like therma care (generic if they are cheaper) are good...but can get pricey. I like them because with the adhesive they stay in place better than reuasable pads and they stay hot for 8-10 hours.

2. A reusable heat pack from Walgreens that has these beads in it (anything similar probably just as good too). I like these because they are reusable so it's a one time expense. Down side is the heat only lasts like 30 minutes and then you have to reheat.

3. A small space heater to keep the room I'm in warm. I would put it in the bathroom an hour before taking a bath to warm up the room so it wasn't so cold when I went to take my baths.

4. Hot baths with Epsom salts...it's STILL the only thing that can give me full body relief.

5. Ultrasound Heat Therapy (got off amazon). I used to do this after baths and then follow with TENS treatment and/or heat. That was the best combo when I had nothing else that really helped.

6. Desensitization Therapy...maybe the best thing I ever did for myself to "normalize" the sensations so I could tolerate clothing touching me and such. I'm still really sensitive to touch and cold just about knocks me out (literally)...but MOST of the time I can wear somewhat regular clothes.

7. Work really hard to figure out what your triggers are and find ways around them. This was a huge key to daily life for me. So many thing I just can't do like I used to so we rearrange cabinets in the kitchen to make stuff easier for me, I wear gloves when I get stuff out of the freezer, I found meals that have like 3 ingredients or less, I keep the stuff I need regularly in easy reaching distance, etc. Lots of small adjustments add up to being able to function...but first you have to figure out all the little things that make your pain worse and try to work around them.

8. Adjusted my diet. I TRY to follow the 4 Fs diet...but I'm not super strict. Cutting out caffeine alone made a HUGE difference for me. It took a couple years but I finally have cut soda out almost completely (only exception is when I go out to dinner). When I "cheat" on this and drink caffeine...my pain flares up...every time. Same goes with sugar. Again...i don't follow it super strict but I can tell you October is usually rough for me because...Halloween Candy...and I'm not good at resisting Kit Kats...but I always pay for it. So I highly recommend looking up the 4Fs diet and seeing what you can cut out of the bad stuff and see what that does for you.

9. TENS unit. This helped me early on when my pain was in one place and I could surround that area with the electrodes. I can't remember if yours is more wide spread but you can get a TENS unit on amazon for not too much money if you can't get one approved by insurance. When this worked for me...it took my pain down to a 3 when it was NEVER below a 6 before.

10. Water therapy. If you can find a place with a warm water pool near you...try it out. Even just walking back and forth was good but when I got a list of exercises from a physical therapist that was the most beneficial. I would go twice a week to the YMCA by me for warm water therapy during their open pool time.

11. A "flare up" playlist on my ipod. For me...this was instrumental music that just helped calm me down when I was in a flare up. I also used this when there were sounds that were flaring me up (like road construction or vaccuum or something similar. Certain sounds can cause flare ups for me so this music with EARBUDS helped a lot. I say earbuds because just playing it on a speaker wasn't effective for me...earbuds really helped drown out everything else.

12. Find something to occupy your mind. For me...it's cross stitch and audiobooks...sometimes coloring. I have a hard time with the cross stitch now with the CRPS is in my hands but I do what I can while listening to an audiobooks. But the activity to help me focus on something other than the pain is a very helpful coping technique for me. I also found these paint with water Magic Painting books from Usborne Books & More (that I got for my daughter) and those are actually very relaxing for ME because I don't have to think or make decisions...just color in with the water. At one point I started working on puzzles again too. Any of these types of things just to help you focus on something outside yourself can help.

I'm sorry for rambling on...but I went a good long time with no relief and where it was really up to me on my own to find ways to get relief and cope on my own without much help. It's important to note that everyone is different...no two cases of CRPS are really the same...so you have to find what works for you. But hopefully this can give you just some idea on things you can do without a doctor to help yourself and make things just a little more bearable.

I hope you find some relief soon and that you can get some help with the work comp stuff. I hope you have a good lawyer helping you with that stuff...because just having someone else handle it can be a big relief (even if it doesn't necessarily make things work much faster).

Please feel free to message me if you ever need to talk or go over the work comp stuff. Hugs.
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Old 10-29-2018, 09:54 AM #3
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Worker’s Comp is a fine system for short term issues, but long term you really cannot imagine what it is like until you are in it. I have had 3 IMEs this year, the first 2 by a doctor who opined I could work more hours than I worked before I was injured, before I had CRPS in all 4 limbs. Fortunately the 3rd doctor's report was in line with the other 5 doctors I see. Yet, there was a suggestion that maybe I should see yet another doctor just to be sure. Doctor shopping is more important than patient care.

The best thing I did was opt for the most expensive insurance. It did not get me super CRPS care, because I don’t think there is any, we are orphans, but it did give me more ears to hear me and more hands to write down what I was saying.

Self-care has been my best care. Resting with my legs elevated. Taking care of a oroboem immediately. If your limb gets too bloated, you need to address it. Do not wait. Your lymph may never recover. Going to a pool to exercise if you can helps with the lymph. If the pool is too cold, buy a rash guard or a short wet suit. Use flotation devices to help yourself relax and do neural unloading in the pool.

If you have money pay for lymph drainage. If you are like me and cannot afford this luxury diy it with you tube videos.

Constantly slather your skin with coconut oil.

Keep a humidifier running in the winter.

Use a pariffin wax machine if you can stand it on your hands and feet.

Use a mini trampoline, it builds bone and mives the lymph and it inlybrequires short bursts.

Wear gloves. I get the texting gloves at the dollar store. I can no longer use a computer, but I can use an ipad for a short time, the gloves help.

I keep a heap of ice packs from the dollar store in my lower freezer bin. They are great to lower the temp fast around me.

I keep heating pads everywhere. And heated blankets, too. Hats hold heat, too

Stimulate your vagas nerve daily, look at You Tube videos for this.

Beef up all your drinks, add collagen, vitamin c, magnesium, coconut aminos,

Make everything you do count for 3 when you are on your feet and feeling fine. Shop with a list. Order online.

I empty my dishwasher only sometimes in chunks. First the top which I leave on the counter. I go back later and put the glasses away. Then if I can in an hour I put the silverware away. Finally, in another hour the dishes.

I shower only 2x a week. I literally cannot do more. It is too much. I need my energy to go to the gym to ride a recumbent bike and exercise in the pool. My entire life is devoted to resting and surviving this.

Please forgive my typos I’ve not got the energy to go back to fix them. I lost a tooth last week and maybe losing another, due to clenching from anxiety, so I am terribly beat, plus my migraines are back with a vengeance.
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