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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Thanks everyone. To let you know I have had the EMG. The only nerve change is coming from the L5. Everything else turned out good. I also have been tested for blood vessel blockages have none. Tested for arthritis don't have that either. I got this RSD from surgery in April this year to remove a bone chip in my left foot. My foot is still numb from the little toe to the ankle, and from time to time the skin burns/tinlges even the toes get it. I have a hard time touching it but was told to use a brush to stimulate the nerves back. I just cringe thru it. Somedays I can't stand shoes and socks but since I have a fulltime job I suffer usually taking an oxcontin to rid myself of pain.I am still healing from a strees fracture that doesn't want to heal. Using a bone stimulator as the body is not making bone in the area in question.I was just told by an ortho last Monday that he believes since there is still pain along with a high arch he may have to reconstruct the foot so I can walk without pain. You talk about scarred, thats me!!!! more so for the RSD getting worse. Besides the oxycotin, I am trying a lidederm patch to the area 12 hr on then 12 off. Have tried Lyrica what a wonder pain reliever, but I got facial swelling and tons of weight gain so I can't take that one. Then tried Amitriptline, this one you sleep like a baby ALL night what a godsend, but again side effect it makes the heart race, not good. I know one has to try different drugs as we are all built differently. I look forward to hearing from all the kind persons suffering with RSD and helping each other.
I know "addiction" is a fear of a lot of people in the early time with rsd,but it shouldn't even enter your mind. We take them to help with the horrible pain of rsd and as long as that pain is there you won't become addicted. There's no way. Your body will become dependent which is totally different. After taking any drug for awhile, you have to taper off it, that goes for all classes of drugs, not just pain meds. The others, anti-depressants, lyrica,cymbalta,neurontin.....none of these can be quit cold turkey if you've been taking them for a long time. Addiction isn't a word that can be used in conjunction with us. So, please don't worry about addiction.

Have you tried lyrica or one of the other meds? They're supposed to help with the burning because that class of drugs works on the nerves which is where the burning originates.

Pool therapy I agree is awesome. I wouldn't have walked on my own again if not for that. I thankfully, back then, didn't have touch sensitivity so it was probably easier for me but it got me on my own 2 feet again even though I hurt more after. It's usually like that though when we deal with doing anything at all, not just pt.

Hugs,

Karen
Marcia, Wow now thats some information. I have a Neuro at Fairview in Wyoming that is willing to help me with this. He is trying to keep my off the drugs that have heavy side effects. Lyrica, and Amptrimpline I have tried with good results but side effects made them unfriendly. So just the lidoderm patch and oxycotin when needed, which is about once a day when I can't stand the pain anymore.
My foot surgeon is at Minnesota Sports Medicine in Burnsville or Edina. He is working more with the fracture that won't heal. Am still using a bone stimulator to get the bone to grow. I wonder if the rsd is playing a part in this not healing???? He is not the one that did my original surgery that caused the rsd in my left foot. But he is looking at reconstructing my foot so I can walk without pain. Not liking that one at all. Scared that the rsd will get worse!!!!!! I could have gone to the U for pain management but am not a city driver at all. If it becomes something I need to do then I'll find a way to get there. I do have a TENS unit but haven't tried it for the foot. I had one symapathic nerve block but the person giving it hit the spine which left me with 8 days in the hospital and the worst headache ever. Little afraid to have another one. I would go to a place that specializes in giving them using a fluorascope. Do you find pain management better than a doc that only knows a little about the disease?
Deb
[QUOTE=Gaollan;3829582]I know "addiction" is a fear of a lot of people in the early time with rsd,but it shouldn't even enter your mind. We take them to help with the horrible pain of rsd and as long as that pain is there you won't become addicted. There's no way. Your body will become dependent which is totally different. After taking any drug for awhile, you have to taper off it, that goes for all classes of drugs, not just pain meds. The others, anti-depressants, lyrica,cymbalta,neurontin.....none of these can be quit cold turkey if you've been taking them for a long time. Addiction isn't a word that can be used in conjunction with us. So, please don't worry about addiction.

Have you tried lyrica or one of the other meds? They're supposed to help with the burning because that class of drugs works on the nerves which is where the burning originates.

Pool therapy I agree is awesome. I wouldn't have walked on my own again if not for that. I thankfully, back then, didn't have touch sensitivity so it was probably easier for me but it got me on my own 2 feet again even though I hurt more after. It's usually like that though when we deal with doing anything at all, not just pt.

Hugs,

Karen[/QUOTE]

Dear Gaollan and Karen,
I am a first time user of this board, I was so excited to find it, especially since so many people have never even heard of RSD, yet know anything about this unfortunate disease. I wanted to write to both of you because I can relate to what you both had to say. Gaollan, my doctor wanted me to get the spinal cord stimulator also. I have had RSD for 13 years since my first knee surgery in 1996. I have had 6 more since then and therefore my RSD has been constantly acting up. I have a very uncommon bone disease where the blood in my left femur does not go to the bottom of my femur causing the bone to die and then break off like a twig. The surgeries i have had last for numerous hours, and I am cut from my thigh to my shin. Then the Dr. grafts bone from other parts of my leg to fill in the whole, it is quite extensive. I have had another piece of bone break off a year ago, but my Dr. said he can no longer graft anymore bone. He said I only have 2 choices, one is a risky experimental lenghty surgery, and the other is a total knee replacement. The only problem with the knee replacement is that because of this bone disease I have (osteochronditis desicans) the knee replacement will only last 2 to 3 years. Since I am only 48 years old I do not want to have to have a number of knee replacements. The bone pain I can handle most of the time but the RSD is the worst!!!
Karen, you were so informative with your response to Gaollen and so kind and understanding I just wanted to let you know that.
Gaollen, I have opted not to have the spinal cord stimulator, because of these other problems I have with my leg, but from what I have read they have ben quite successful. I have recently started taking lyrica and found that to help with the burning pain. I am also on the Duragesic patch, and cymbalta, I have found this combination to be working so far. The problem is my body builds up such a tolerance and then the meds don't seem to work as well. I also was on oxycontinin 80mg. 3 times a day with a number of other meds for many years. I stopped taking all the pills (17of them) one Dr. had me on 4 years ago, while I was working and raising 5 kids. I don't know how I did what I did all I know is that it was horrible commming off them as I flushed everything down the toilet one day and stoppped cold turkey. It was the most horrible experience I have ever had.
Sorry if I for rambling on and on, but as i said this is my first posting!
Thank you for your time and understanding!
ALL MY BEST,
MBO1221
[QUOTE=manrsd;3857910]I understand what you say,, But the problom I'am haveing is I don't feel much pain because of meds So when there pull or move my hand every which way they can,, When I do tell him to stop,, Make me think .. If I wasn't on these pill would I be tell him to stop at alot faster.. If so does that mean he could be damage me more because of it with out even knowing ...

I tell you I glad I'am on these pills but I scare to know what it going to be like when I go off them... Feel pain up my arm a little is scary because it has been that long sence I foud out I have RSD.. It's very scary ...

My head is all over the place with this..

Thank you for your help[/QUOTE]

Ok, I see what you're saying. Sorry I misunderstood. :) No worries though.

The only way he'd damage your hand during pt is if he were really rough,twisting the hand and wrist too far. Like wrenching it side to side looking like he might be trying to break it or something. If he's just moving it in a "normal" way, then he wouldn't damage your hand and cause more problems.

Why would you go off the pain meds? It's important that you keep taking them so you're able to function and get pt. With rsd none of us would be able to function if we weren't getting pain management with meds. If you don't get it into remission, then you're always going to have to take meds. It usually takes a combo, like a pain med, a muscle relaxer for muscle spasms and it also helps to calm down the spasms that make your arm or leg jerk uncontrollably, and one more med like lyrica or neurontin or cymbalta or topomax. They're supposed to help with nerve pain and for some they work on the pain and any burning you might have. Some it just helps the burn but not the pain.

This is all overwhelming I know but I'm glad you're asking questions. We don't always have concrete answers but at least we can tell you what might happen or not happen and if something is related to the rsd or not.

Hugs,

Karen





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