Hi Karen--you might also want to ask your Doctor about the Lidocaine patch, and I think I remember reading somewhere about OTHER types of patches that work for pain, (Klonopin?) in addition to creams. You might want to do a little web-surfing before your Thursday appointment.

Hang in there! Don't give up hope, and DON'T let your Doctor, either! If HE isn't willing to do the necessary RESEARCH, or is NOT "open" to other forms of treatment, like the patches and blocksd, etc., then perhaps its time to find one who IS.

Brokenwings

Couldnt of said it better! My hubby saw so many people at Mayo who had been "treated" by so called Dr's who were not open to RSD as a whole - There were people with amputations, a man with a black leg (his dr had him jumping on a trampoline for treatment and had told him it was all in his head, he just needed to strengthen his leg.... ), people with sores and other skin problems, people in wheel chairs and more - all due to lack of adequate treatment and misunderstanding (or not wanting to understand at all) RSD. Switch Dr's if you need to.

Hi Hubby with RSD-- hre is the link to that article....

http.//www.rsdfoundation.org/test/AMA.html

Many, many eperts in the field consider Dr. Fitzpatrick's criteria for RSD "THE BIBLE"--DESPITE how the ICs keep trying to make the criteria almost IMPOSSIBLE to meet (gee, no surprise, seeing how COSTLY the treatment is...)

Also, the web-site discusses the use of patches, etc., etc under the "treatment" section, as well as promising new treatments.

Brokenwings

Brokenwings, Thank you so much Im on Lidocaine Patches and Klonopin for yrs. Doesnt do much nothing really. But I try...........He has done all the different Blocks nothing Stimalor and the pump. The pump I had A leck in my spinal fluid. The Dr is the best here and I went to UCLA a teaching hopsital they both said sorry right now they dont know what ealse. My body wont be helpful and there is problems everytime. Im thibking of the stimaltor by the top of my spin my neck. But I have had so much problems to Im afraid So are they. My dr would do anything if he could thats why I do want to give up ....Everytime I talk to a dr about a trail they look at my records and say no..................Im all alone I dont have support from my familyand I got devorce and I only have my almost 15yr old son.........Its hard..........The pain is getting to me .........my son says he can hear me crying at night sometimes I dont want that...................Im all alone now My boyfriend when he lived here did alot of research on the pc I dont know pc Im just learning..........I just feel very alone no friends except on my pc because my boyfriend moved out of state I was suppost to go to but things didnt happen that way and I dont really have him anymore here Im on my own with my son in a chair sometimes I cant do it anymore and sometimes I CAN !!!!!!!!!!! I will try to find things on the web since I dont really drive My cast is on the right foot and I cant feel anything with my feet but pain and burning.I THANK YOU VERY MUCH and I will talk to my dr again he says I need to move somewhere that they know maybe..............Im thinking of doing that I just dont know where because Im alone and hurting and scared because I have been fighting for 12 yrs and almost died several times due to a drs mistake so Im fighting 2 problems. If you here of anything anywhere please let me know...........I will do try anything.............THANK YOU Brokenwings Please keep in touchwith me.......................Gentle Hugs Karen

Hi RSD Kiti,

Do you live by a area called Silver Lakes. I used to live in S/L. I also have 3 son's my youngest is 14, I am now living in Temecula. Hugs, Roz

buckwheat, No I dont I live in Pismo Beach area, San Luis Obispo, 5cities.I know where Temecula is. WE have alot to talk about with kids the same age.Im not married ntmore Are you? Its hard. Im in a wheelchair, with no help and drs have given up they have done everything they know....We can talk anytime you want to.
Gentle Hugs .................Karen

Hey.

With the contrast waters, I am currently in intense pt/ot 35 hours a week to hopefully reverse the RSD cycle. They do the contrast soaking tubs. They say that the more temp differences, the better. On my first day of intense pt/ot, they decided to do it with COLD water with ICE in it and a second tub of water that felt really hot. I personally feel that it isn't working for me and that it gets worse everytime I do it. I screamed harder the second time of doing the ice water than I did the first time. Of course, I have just completed my 3rd day of the intense therapy and they skipped doing the contrast soaking today ( ) so it might not actually start helping until after a week or so. I'll let yall know if it has helped or not by then. By the way, if any of you guys want to private message me, I can give you some of the RSD exercizes that I am doing and they might help some. I am now able to walk after about 8 months. It isn't very good (still limping from original injury) and I can't walk or stand very long but I can walk I have exercizes for both upper and lower extremities.

Hi this is rsd kitti, I did that to Im going on 4 yrs of this and they stopped everything Im in a wheelchair I havent walked in almost 4 yrs so that would be great. anything.........Dont give up I know its bad.............My pain is in the 15-20 off the scale. Its so hard so Ill try anything. Im in stage 3 upper and lower. Thank you so much

Gentle Hugs Karen

I have trouble at times taking a bath. My Dr. told me also not to get the water too hot because it wakes up the nerves more. If I get it too hot I can't stay in it. There are times I can't even take a bath so I will just take a sponge bath.

I also have trouble sleeping in pajamas or anything on my legs. I have a pair of pajama shorts that I sleep in a lot and I keep my heat below 60 even if it's below 0 outside because I can't stand my legs getting too hot.

I haven't found no happy medium as most of the others said. It does take time to get to where you can stand some things and other things I don't know if a person with RSD can.

It interest me that people talk about using ice or cold water. Ice is suppose to be a no no for RSD isn't it?

Ada

Hi Dreambeliever--the warm baths have been most beneficial for me. I can't stand the water being too hot, either. I do almost ALL my exercises in the tub.
my main problem is SEVERE cold intolerance--and it will trigger a very bad flare-up. My arms/hands turn reddish/purple and ICE COLD. They BURN like when you handle handle snow-balls, your hands turn numb, and then they start to "thaw"..HORRIBLE. I also can't stand to have clothing, etc. on my arms. With the de-senisitization exercises, it has helped, but the baggier and sorfter the sleeves, the better.

I cut all the sleeves off my flannel P.J.s until I found super-soft nighties with NO sleeves. Nite-time can be pretty rough; my legs will be ok, but just my arms/hands will get drenched with sweat and get super-super sensitive.
I have spent a FORTUNE on feather-beds, goose down pillows, goose-down comforter, and very high thread-count sheets (the cheap ones do that balling up thing, and it really bugs my arms...).

My favorite sheets so far are some flannel ones that I got on one of those TV shopping channels, you know, the one that has "Quality"-I found a TERRIFIC "Value" at a "Cost" that i just could NOT touch here in the mountains where I live--and they were delivered to my door! VERY VERY SOFT

Those contrast baths were just AWFUL--my Pain Doc doesn't want me to do them, because it just makes it WORSE, and longer to get everything to calm down. So I have not had them for three years.

I was diagnosed relatively quickly, and started a series of Nerve-blocks within 3 months of the dx--those helped the most, and the Radio-frequency Ablation. WC is "not happy" with the dx--so , they haveve not authorized ANYTHING for the past several years--have basically had to figure everythin out on my own, with the help of my pain doctor. So, while I do have RSD, I feel fortunate that it has not progressed to the level and EXTENT that it has affected others on this Forum.

RSD Kittie--I REALLY understand how awful it is to be all alone with this RSD.
My b-friend of 10 years just "dissappeared" LITERALLY, several months ago after a very serious accident...which is probably for the BEST, as he had become increasingly verbally and emotionally abusive--it might very well have escalated to physical violence. So, I had to make a decision to ALSO have NO CONTACT with HIS "friends or buddies", as they are/were just as bad as he!!! As a result, I am all alone, with my friends/few relatives being out-of-state....this summer, when I am feeling better, i hope to take advantage of the WARM weather, and try to get out a bit, and maybe meet some NICE people.. For now, I am up to my neck in SNOW and no way to shovel it!!!!!
(But, that is ok--I would rather deal with the "white stuff" than the "other stuff", if you know what I mean!)

Some "men" (and "women") are Very threatened by "circumstances" that they "perceive" that they have NO CONTROL over--so THEY control the situation by being nasty to US, reacting in inappropriate ways, or by just BAILING. It has been a true "learning experience", in more ways than one!!!

Just hang in there the very best you can, Kittie--we are a LOT stronger than we think we are--and YOU are one heck of a STRONG, BRAVE lady!!!

If I find any treatments that look like they might be helpful, I will post them. And i am sure that the other posters will too. Finding something that works for you, me or the others, is basically just "trial and error"--keep trying, and I am sure that you will find something that makes the RSD more "tolerable", ok?

Maybe that pump thing that Tayla descibed might help calm things down...couldn't hurt to ask your Doc to give it a TRIAL !!

Brokenwings