I'm so sorry to hear about everything that you are going through right now, Stressedout! I really hope that you aren't dealing with a spread and that if you are, you will get over it pretty quickly!!

Unfortunately, I don't think there is really anything that we can do to stop RSD from spreading! I have learnt that RSD will do whatever it wants, whenever it wants and theres nothing we can really do about it unfortunately.

I have RSD in my left leg and both arms. It started in my leg, then spread to my right arm after an injury and then to the left after a fall. Whenver I have suspected that the RSD is spreading, I have tried to move as much as possible. It is REALLY painful BUT it is what my doctor and PTs suggest and say can help more than anything.

I usually start off by doing really gradual exercises and then build up when I feel that I can tolerate it. I find it easier than doing too much at once as that seems to make me a lot worse! Theres a fine line between doing too little and doing too much!!

I have also been adviced by my PM Doctor to take some strong doses of Ibuprofen when I am in a flare and/or suspect a spread. I'd speak to your doctor and see what he thinks about that and what is the highest dose you can take that is safe to do so.

Have you tried anything like Espom Salt Baths? I know they can really help some people as they tend to relax your muscles a bit. They didn't help for me but as we all know, everyone is different and no two people will react the same.

I totally understand what you mean about not being the type of person to complain or scream from the rooftops that I am struggeling. I have never been like that and it takes a lot for me to compain. I guess sometimes I feel like I am putting other people out or come across as a winer ... thats where my 'Type A' personality comes in!!! Since I have had RSD though, I have slowly learnt that I can't keep 'ignoring' things and have opened up a little more ... i'm still really shy but do tell my doctors when I am struggleing. If you don't ask for help, unfortunately you sometimes don't get it.

I'm keeping you in my thoughts and prayers and if you ever need anyone to talk to, I am here for you as I DO understand what you are going through and how scary it can be!!

Take care and please keep us posted!

If you can convince a doctor to write for it, a warm pool, (exercise of any kind) but warm pools are great, as you can move through the water, (not necessarily swim), with some resistance, and get some "soft" movement, and blood circulating.
DEW her does this.

I think it's excellent, and is recomended by my doctors!
(You asked how to slow the spread, and this is the only thing that I think will do it, imho) Exercise.

Feel well!

Pete

From what I have been told and everyone is different so follow your body and treatment teams advice but it is key to keep moving. Very hard when the pain is so high. Have you been on any of the nerve meds like neurontin? Do you have tramadol? You may want to try it if you do during your flare ups. over the counter on here someone suggested Alevel liquid gel caps and I take that on an occasion. The bath is good as well and some like epsom. I think it is good you are seeing a psych. I waited 2 plus years to do that and I am so gald I finally went back. It does not take the physical pain away but helps me be more rational and with anxiety which I would think helps pain.Hang in there

Dubious mentioned warm bath and then a walk, I have found that gentle exercise helps greatly. After a suggestion from my orthopedic surgeon (who first suspected I had CRPS) I have been doing water therapy. For basically the same as the $20 per visit insurance co-pay, I go to the YMCA and do their water rehabilitation. I have a rehab specialist who has gone to training to do water rehab. She works for the YMCA after approaching her wish my diagnosis she did research as to what would be best for me. She is very knowledgeable on gentle exercises, you get the great weight bearing exercise in a 85 deg pool. I highly recommend it especially if you miss a lot of physical movement/exercise. Hope this helps!! Best wishes for a pain free day!

i know it was mention about the epson salt i use this alot. i have full body rsd .. and it helps. for me i have to get the water as hot as i can stand. and sit in it as long as possible. for the arm i would try to do the same thing. also water therapy is good idea i do it also at the Y and it does help.

the spreading. there really isnt anything that i have found to stop it.. IMO .. i know some say blocks etc.. well it doesnt do it for me. i would fight for pain meds to control the pain. because here is the problem with the RSD once you get into that horrible pain and you have no back up plans for it.. its very hard to get it under control. i went a couple years with out any meds period. and i know how tuff this can be.. i have tried it all ..

try the bath .. it may help..

carrie

If there is any "truth" I have learned, it is that there are no two cases of RSD the same, and each person responds differently to treatment plans.

Over the years, I have tried most of the pain relievers out there at one time or another. I have been on ibuprofen, Tramadol, Percocet, methadone, oxycodone - so many I would need to get out my records to name them all. Sometimes they will work for a while and then stop working and I need to switch.

The same thing is true for mechanical relief like warm baths, heating pads, etc. Some days they work, other days they do nothing.

I do not say this to be discouraging, only to tell you to be patient and keep trying. All of the people who have responded have excellent suggestions of non-prescription remedies. I also personally like a heating pad on a medium-low setting. Give these suggestions a try and see what they do. Just don't be alarmed if you don't get the pain relief others have. Remember that this is normal.

Mike

Stressedout,

So sorry you are going through this. It took my doctors 16 months to figure out what is wrong with me, so my RSD was pretty set in by the time they started treating me. Mine did not spread UNTIL my SG blocks. After my second block, it spread from my ankle up my leg and into my knee. My doctor said that some PM docs will do tons of blocks, but the truth is that if the pain returns after the second or third block, the blocks are NOT working. I would avoid doing any more of them if you can.

My Tramadol doesn't do a whole lot for me, but my doc says it has mild anti-depressant properties, so if you stay on it, you might at least be able to avoid some of the stress triggers- mine gets really bad when I am stressd out too. If you don't have the choice to get other medications until you can get a second opinion, I would at least stay with the Tramadol and see if it helps after it has been in your system for a while.

I completely understand your frustration with the pain. I feel like screaming soemtimes because nothing stops the pain (I'm on Tramadol, Neurontin, Cymbalta,and Hydrocodone 10/325). The best thing you can do is keep living your life the best that you can so this disease doesn't take over. Good luck. I really hope you are able to get some relief soon.

Hi Stressed Out,

I was hurt on the job 32 months ago. WC was great until I was diagnosed with RSD. The preliminary diagnosis was made about a year ago.

Whenever WC denies something (which is just about all the time lately), I use my personal insurance to pay for it. Meds, PT, doctors, etc. Anything I need. And then my lawyer gets the bills paid by WC. So far that system has worked for me. I always make sure that I get what I need to try to control my pain because up until a few weeks ago I was still working FT. And I see my pcp when I need things done (doc referrals, MRI's, scrips ect) and he helps me out quite a bit. My PT is awesome, he has also helped me. I see him a few times a week and for me it's been really helpful to have someone that can answer my questions about the parts of my body that really hurt and the different ways to get them to feel better. If you don't have a good PT yet I would highly recommend that you try to find one (maybe get a referral for one that knows about RSD from a good pain doc). My PT ordered me a TENS unit and helped me learn how to use it.

My lawyer told me that my case will never "close." In other words, I will never receive a settlement from WC for my injury; instead, they will be responsible for paying all my medical bills related to my injury and disability pay (as needed, when I'm not working, like now) for the rest of my life. The disability pay part is not that great - the rate is low compared to what I make when I work and it does not contemplate things like benefits. I live in Rhode Island. It's tax free, though.

You may want to make a list to go over with your attorney. He or she should be making you feel LESS stressed out. In RI they get paid by WC, not by the victim. It may be the same in your state.

I hope this reply helps you out. BYW - my pain meds are written by my pcp. I've never signed a contract, but a lot of patients do, it's up to the doc. I take a lot of percocet. But until I started taking methadone as well my pain wasn't always well controlled, and I was miserable. If you feel your pain is really bad and you need help, get a referral to a good pain specialist from your pcp. Try to use your WC to pay for it. If you are denied, then you have a right to use your personal insurance to get the help you need. Let the rest fall into place later. That is what my attorney has told me, and after one year I have yet to get into trouble using that system. Just make sure you are denied first.

If you have any other questions, please feel free to PM me. I'd be happy to help you.

Sandy

Hi,
I just settled with w/c in the state of georgia - we do not have a life time insurance but with my case, with the settlement, w/c had to do a medicare set aside (I was awarded ss disability which makes your case stronger) as ss disability said, this is a w/c injury and w/c needs to provide care for me for the next 23 yrs so a set aside account was set up w/an account that pays til the fund runs out then medicare with pay - if you get awared ss disability then you are in a position to receive medicare set aside - I am assuming this is the way it is in all states as ss disability is federal - I hope this helps - also, the # of years that pay depends on your age and the # of years some calculated chart says you have to live depending on how healthy you are -

Sorry you are having such a difficult time; I am allergic to most oral pain meds, and I do use lg doses of ibuprofen. Don't overdo, keep in touch with your doctor, and drink plenty of water. Ibuprofen can damage your kidneys if you take too much and it can cause your stomach to bleed, so be aware and be careful. I take three or four at a time; it usually works best if I take it right before bed. Try propping your painful limb on something soft; chenille throw, super soft pillow, etc. Not sure if this helps, but good luck to you. Suz