RSD Helpline Support Group

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Hello all, I've posted a couple of notes with a happy attitude. Hoping that I would be welcomed. Just like being affected from RSD. I'm not going to give up. For me life as I knew it was happy with alot of structure. I had been seemingly single for my youngest son wanted to live with his dad. Dad was ill and dispite how I felt about the guy. I let my dear son live with him. He had that right to know his dad. Well last February dad passed away. Now I'm a single mom again. Worked 42 plus hours as a Security Officer for the largest Auction in the World. Manheim Auto Auction. I had a great schedule. I only worked Monday, Tuesday, Thursday and Friday. My hours were 10.5 a day. One Monday at work. I was surprisingly busy. I ran the inbound gate for the inventory lot. Alone. The outbound gate was dead and the two working there were in their post relaxing. It had been raining that day early in the morning so the macadum was wet. I had to scan the cars making sure only authorized personel entered. Then one car was giving me trouble. I couldn't read the vin. The van's of drivers and other inventory cars just kept lining up. I was so busy I couldn't see straight. But, I had to get that vin off that SUV. It was my job. And my job meant the world to me. I have a great amount of pride. Makes no difference if I were a waitress in a resturaunt or working in the Medical Field as a Medical Assistant. I am going to accomplish pridefully. Well I made a mistake. I probably should not have climbed onto that SUV. But I did. And when I came down my feet went out from under me forward and I catapolted myself right on my butt. I saw stars in black and had an immediate headache. Surrounded by other employees of course I was embarrased so I popped right up off the ground and said to all "Sure I'm ok". Well I debated for about 2 hours to even notify my supervisor. I didn't feel that bad. My left hip and my left wrist hurt. But being the stubborn person I am. It wasn't that bad. I had a job to do. Well the higher up's kept asking me for the next two days. "Are you sure you don't want to go to the Dr.". I finally gave in and went. The Dr. wanted to give me a few day's off work. I explained to him I was a single parent and couldn't afford such and he let me go back to work. 10 days later. I was screaming in pain and could hardly walk. The Dr. made me go home. Sent me on my way with more meds. I went back and forth for many MRI's. Sent to a bone specialist because I had a labral cyst anteriosuperior left hip. So that guy put a big ol needle in my hip. I thought I was going to come unglued. The next professional was the nerve guy. And him sticking those needles in me one by one, oh my lord. Then he cranked up the juice. I thought I was going to peal the drywall off his office wall. Never in my life have I known such pain. Then he says "Well all seem's to be ok with your nerves". How can that be. "But Ms. Your Left leg is 2.6 celcius colder than the right. Odd". Tell me about it. I felt so lost. I was being treated like I was crazy. Depressed. ha. minor word. I couldn't walk. If I tried. Both legs were blue in less than 10 minutes. My boyfriend was seeing this. How come the professional's couldn't. Were they blind?. I think evasive is a good word. I had a crying conversation with my boyfriend. The Dr's were all making me think I was crazy. I could see that my boyfriend was edging away from me. I exclaimed "Your acting like you don't believe me either. Please, don't get on the bandwagon of treating me like I'm making all this up." He admitted he was perplexed. He understood what I was saying and started paying attention to the way I was being treated, ignored, spoken to and all that gobble-de-gook. Now were in the second month of the Dr. game. The 5th Dr I saw was another bone guy. I went with good spirits for I am a happy person. No matter what. Used to tell the guys I work with. "If you don't have a smile on your face you may not enter my lot". Makes me giggle even now. I miss my job. I miss the people I worked with. They were my friends and I wish I could go see them to let them know I'm alive. Anyway. That 5th Dr. I teased him. His degree's said he was a MS, MD. The MS to me meant mental stability. That Dr MS, MD took less than 2 minutes with me and said. RSD. I burst into tears. He started appologizing and I explained Happy tears Dr. My boyfriend had been doing research about my symptoms. Brought me home bunches of papers about it. I had already been convinced prior to seeing Dr. MS, MD. I told the Dr. I love you. Now I can get started on getting back to me. I'm not crazy. I'm validated. However, I do realize now, looking back. I was in complete denial of the situation. A month later I took Dr. MS, MD's referral to a Neurologist. My memory, short term is yucky. My balance is whoa nellie. I'm on crutches by now. Could get around with them pretty darn good. Even stairs. The crutches were my friend. Now the Neurologist says. "No more crutches young lady and do not baby that leg". In the fog that I was in I was like. Yeah sure. The Neurologist says "I'm gonna take your pain away". I'm thinking. So it's that easy. He gave me a bottle of 75mg Lyrica. Told me to increase. By the time 2 weeks were up I was on 400mg and feelin pretty darn good dispite the side effects. Then the Neurologist sent me for a brain scan. Blood tests. I suppose he's ruling out things. But he did call and tell me I have leasions on my brain. I have no idea what that means. He told me to do 300mg of Lyrica in the morning and 400mg at night till my next visit. And discussed that I may need a spinal tap. I have no idea what all that stuff has to do with me and RSD. But I'm not looking forward to it. I wish I could go for a motorcycle ride to get some of the mental edge off. But I can't. My son is being very suppportive. The boyfriend as well finally. RSD has promoted alot of teamwork around here. My boyfriend's dog acts like I'm master now. With all his sloppy kisses. I still feel very alone as I do my best not to complain about my constant pain and changing situation. I have no one to talk to. I'm hoping this site gives a friend of sorts. And I'm grateful to at least be able to figure out how to get a messege in for every time I try I forget how I did it. But thanks for reading about me. Respectfully, Diana

RSD is not a wanted disease under workers compensation.. My experience is that u get bounced around alot. They now say that RSD costs more then cancer ..

My advise is get a lawyer.. so u can find the RSD specialist to treat and rate yur disorder correctly.

If you were in california have a list of doctors ..

tc hun !! stay active in yur case but let the legal doctors help you ..

injured in 1999 but didnt get specialist till 2003 and my rsd went to last stage ..

case still being argued .. but i have the right doctors now ..

Who do you consider to be the "right" doctors? I commented to my son's pain management doctor recently that he was only dealing with the pain of RSD and nothing was being done to try to cure the illness itself. He said very bluntly, "There is no cure for RSD". So have you found a doctor who is actually trying to make you better? What sort of doctor is this and what treatments are you having? We have found that the only treatments that help the disease are alternate/complementary medicines [not covered by Workers' Comp of course]. I would really like to know who you have found that helps.

Also, as to the "last stage of RSD" that you talk about. We had a consultation with the head of pain management at Beth Israel Hospital in NYC. He said there were no stages of RSD and that it had been a mistake. One doctor had thought there were stages and that everyone else had just followed along but now it is thought that there are no stages. HAve you experienced stages where the disease has been noticeable different?

My son just had an IME and the doctor questioned the diagnosis of RSD. He said that 1) my son did not have symptoms of discoloration, thinning of the skin etc.; 2) no treatments had worked. Therefore this was not RSD. He had NO previous medical reports on my son and when I offered to send him some, he was not interested in them. Therefore, he was not privy to the information that my son had had these symptoms and had treatments that got rid of them. I supposed he was not interested bc he was being paid by our WC insurance company, GB. GB and the WC Board accepted along ago that my son has RSD caused by an accident at work but it looks as though they want to relitigate the whole question again. The IME was mandated in a decision by the appellate court when our GB appealed the WC Board's deicsion to award money for a home health aide for 4 hours a day, 5 days a week. The nurse came to do an eval and she said we needed a home health aide for 4 hours a day SEVEN days a week! So I see she was a bit more independent that the neurologist.

I am in california and our laws under workers comp have changed due to dear arnold.

i found some links .. u have to be active in yur case

when it says contact us .. email them and ask questions .. u dunt have to give the whole history

there are support groups to go to .. find them on the RSD websites for yur area ..

I have never seen a defense doctor admit to RSD .. it is costs to diagnose correctly ..

to treat RSD now cost more then Cancer ....

Workers Comp is about crunching the numbers .... to say it nicely ..

This is what attorney is for ........... YET stay informed and help sufferers get the word out in the world that this RSD is important to address..

when i have time i will focus better on some of yur issues .. right now i was to be baking cookies for xmas

Thank you so much for the info. The first website you mention says the following: "This procedure, called surgical sympathectomy, completely relieves the pain." I have read in many places that this does not work bc the patient can get phantom limb pain. Wikipedia says: "Approximately 50 to 80% of amputees experience these phantom sensations in their amputated limb, and the majority of these people report that the sensations are painful (Sherman, Sherman & Parker 1984).

I am VERY wary of anyone who claims 100% sucess rate for any treatment of RSD because it is so individual with this illness and my son has done several treaments which have made him permanently worse instead of better - nerve blocks, HBOT and acupuncture all made the RSD spread. Anyway, I thank you for the website bc I have not heard of this place before and I may check it out in the fure. They do specifically mention RSD/CRPS in their website which is a plus whereas most places do not.

The spine-health doctor, Kenneth Zahl, looks incredibly interesting. His website says: " I also have extensive experience with pulsed radiofrequency nerve modification to treat facet or reflex sympathetic pain." This sounds similar to the treatments my son had from a chiropractor in Pittsburgh. It increased the bloodflow to his feet and got rid of the cold pain, discolored skin and thinning of the skin. However, it made him unable to sit with his feet down for extended periods which has prevented him from normal life and doing things such as going to a movie or going out with friends. He travels in the car with his feet up and spends all day in bed now except when he has doctors appointments. My present goal is to get him to go to a movie which we can leave at any point but he is too scared. He now wears support socks which, although painful to put on and have on, have increased the time he can sit. I am sure that my son could be helped with treatment to reduce the blood flow to the feet [hopefully without bringing back the cold pain etc.]. The chiropractor in Pittsburgh says she may be able to do that but we cannot get there because my son cannot tolerate a 7 hour car trip any more. Every bump in the road hurts him as well as the centrifugal force of going round corners and any acceleration or braking. This is all much worse now than when we used to visit Pittsburgh which we have done 4 times, each time for a week of treatments.

I will look at the other websites another time. Thanks again for the info. I would love to hear what treatments have helped you. Hope the cookies turn out well!

I dunt give medical opinions .. i have my experience and i know how to do my research ..

my specialist says .. dunt lay down .. keep exerizing or it will be worse ..

There are many procedures that have to be done.. unforunately

http://www.rsdhope.org/Showpage.asp?PAGE_ID=136 now medicare is a guideline to know what to expect to get to the diagnois and treatment of RSD even workers comp .. can benefit from there knowledge ..

right now is a time to lobby and make others aware of this disease ..

only way to do that is educate yurself

and most of that now comes from what works for u and what doesnt ..

amputation is no longer necessary for RSD .. i understand that this is the oldest procedure for the unexplainable ..

I take the time i use to be upset and complain about y changes to educate my self and try to give back .. my conition is irrevisble and in teh last stages .. so i take my saddness and try to help .. but please never read me as thus saith teh lord .. each have to do our own footwork ..

but i will always have support going thru it.....

I was not asking for a medical opinion, only for what sort of doctor/treatments had helped you. As for your remark that my son should keep moving, I totally agree and the blood pooling in his feet and causing pain is probably worsened by his inactivity. Unfortunatley, he has been made worse three times now by land physical therapy. He will no longer go because they do not know what they are doing. However, hydro therapy was very good and he has just had an evaulation to resume that. We are waiting for an opening. He was doing exercises at home but the last time the PT hurt him, he became so discouraged that he is no longer doing them. I saw during the eval for hydro that his range of motion had decreased. I am hoping the hydro will help him move again - he was walking in the pool in February and then he suddenly had a flare up while taking a shower anf the pain attacks lasted for a couple of months and prevented him from continuing hydro therapy. We have got the pain attacks down now with the alternative therpaies he does and we are about to start the hydro all over again. I hope we can get back to where we were in Feb.

ooopsy .. now i reread .. let me clarify .. i only have my experience... and Linda is so right suggestions only ... i read so much

sorry all

I have read so many stories from people about RSD and they are all pretty much the same, everyones life is turned upside down..so I just learned to live upside down! LOL Like you I lost my career,my friends,my health and the worst was when my wife left. We had always been very close but as I got sicker and the rsd took over my whole upper body she told me that I was controling her...actually the disease was controling me(lots of thing I cannot do any more that we did togeather) and of course the trickle down effect was too much for her. May the fleas of a thousand camels infect her armpits! I was an exellent husband to her! For me The ideal thing was to find new things you and your significant other can do togeather...I love going to the movies or Cancun Mexico! The hot,humid climate in Cancun with high oxygen content makes me feel better and I get a great tan!

well, keep your chin up, I found a good local RSD support group in Denver and actually did a year in group therapy to learn to live with rsd a few years ago. This is a good group as far as internet groups go but I think from my experiance the best is with the people right there with you and a good group moderator(counsoler) to keep things on track and keep people away from giving advise instead of giving from their own experiances. I have good days and bad ones, I take full advantage of the good ones and rest on the bad ones...My favorite thing to do is go to a 94 degree therapy pool and streach out all those sore muscles, regular pools are kept around 78 degrees, I dont recomend those...you most likely wouldnt get in one farther than your toes anyway :)

good afternoon ya'll

havent ever posted b4, i have just read, but this i did want to say something,

as to their not being any stages, just another dr's point a view, i have had stages... so i as far as only speaking for myself do not bleive any dr that doesnt beleive their isnt, same as the dr's who say there isnt any such thing as RSD,...well i would think they would feel a whole lot differently if they were the ones in our shoes, or whould i say our bodies, sense shoes now are a luxary for most of us....im a fighter, and i try like heck, but as far as keep moving yes that is true, but when it wont let you then ya cant and thats that....i do as i can and when i can, and thats alli can do...i had one of the top dr's there was in the feild of RSD study, and well due to insureance changes no more....but i know he did all he could for me, and called me his miracle patient...i have an infusion pain pump...has morphine and clonidiene in it...works?...awe nope, but better then i was b4 i had it...would i tell anyone to get it,,, no way....as far as the stimualors NO WAY...i have many friends, and they have had such horrible expercinaces with it, but just like anything, it is really a catch 22, either it will work or it wont, if i have learned one thing having this beast, it is you can only speak for yourself becuz it does so many things to each of us, yes it has its things that are the same an very simlar, but we each have a different body and different immune systems, allerigies ect, so all i can do is speak for me, and I know for a fact in my case i am in the 4th stages....have it in writting and i dont care how may things dr's do, or say, they always call it something new, they always barly start to even begin to fin anything out about it....Complex, you got it....they dont have a clue ya'll....hope i didnt sound negivtive cuz i didnt mean too......just i have been thru hell and i just felt like i needed to finally get this out, thanks for ya'll being here and for all ya'lls help Love ya'll .....Southern_Rain

Lola, I am in California and would like to hear of doctors that can help me and not go on thinking I am crazy let me know. I am having a hard time with my WC case, but what else is new...so is everybody else. as for the other posts about keeping movment to our bodies...I practice Qi Gong, kinda like Tai Chi but a little different. It encourages slow movements and increases blood flow. Look into both. I am new to all of this so I am trying to do what I think is best for me, we all need to search for anything that works! Peace -Jama

FYI RSD is designated by the Federal Government to give SSI/SDI full benefits without a lawyer. I didn't use a lawyer and I got my full benefits. In Chico we have a place called Injured In the Law, who takes cases with out taking your money. It's a great thing.

At one time I took 31 pills a day!!! Yipes. Now I only take 2 for my RSD. What a change! I bike, I lift weights, and I can do everything I could do before the RSD. I've had it since 2002, but with ECT treatment I have recovered greatly. I only feel it in my legs, and I did feel it all over my body. Not too shabby!!!

Any questions, please feel free to contact me.

I would love to hear more about your ECT treatment. How many treatments did you have? How frequently? Did the RSD disappear suddenly or gradually, all over or in some places before others, was this treatment at a hospital or a private doctor's office, etc.

Important Announcement The MSN Groups service will close in February 2009. You can move your group to Multiply, MSN’s partner for online groups. Learn More
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