Thursday, April 17, 2014

Thursday, May 21, 2009 marybeth37, Community Member, asks

Q: I have RSD, real pain is developing in my thighs under the burning pain, what helps this, please?

RSD is from sprained ankle July 2008, have really bad burning in legs that is now unbelieveable pain under neath it, not really a spasm, deep tissue pain, Nuerontin no help for this, what should I do? still on crutches.. primary doctor doesn't really know about RSD.

Answer This
Answers (5)
Karen Lee Richards, Health Guide
5/25/09 5:56am

RSD pain can be difficult to treat.  Here's a link to a number of medications and other treatments used for RSD depending on the type of pain you're experiencing:  http://www.neurologychannel.com/rsd/treatment.shtml

 

I'm not surprised your primary care doctor doesn't know much about RSD.  Finding a doctor who regularly treats RSD can be a challenge – but you really do need to try to find one.  Unfortunately, there is no particular medical speciality for RSD.  It usually boils down to getting out the phonebook and just calling various doctors and asking.  Some good specialists to call include neurologists, orthopaedic specialists, rheumatologists and physiatrists (physical medicine and rehabilitation).  You may even have to check surrounding cities or be willing to travel a couple of hours to find someone.

Reply
melia357, Community Member
7/20/09 9:25pm

I myself have suffered from RSD for 11yrs. now. Keep reaching out on the internet learn all you can  on the disorder.  Most doctors do not know much about RSD. I myself have walked into several pain clinics and found I seem to know more than the doctor I am seeing. You have to find a doctor who sympathizes with RSD.  You want to be comfortable with the doctor to where you can speak freely. I found this helps more than anything. Having a relationship like that is what you need. It wont be easy you will have to search. When it comes to pain medications, they do not want to prescribe them. If they only knew what we go through everyday. It took me yrs. to find a doctor I was comfortable with. Just last month he retired and I'm trying to find a new one at the moment. It is so difficult to find a doctor whom is right for me. That why I think you should know all that you can on  RSD. That way you know the doctor knows what they are talking about. You know they understand what you go through everyday. RSD is like a cancer that slowly kills and tears down the body. The pain is that of cancer the burning is like fire the stabbing just makes you want to die. Its consent yes pain medications do helpsome what. I myself had a nuerostimulator installed. It helps very much along with the pain medications. If you are interested and from my area I can recommend a doctor for you to see. I hope my response has helped you. I wish you luck and remember find a circle of friends that are going through the same thing. If its online its online its easier on us anyhow. I feel its important to have a support system though you need that. You may contact me anytime my URL is melia357   

Reply
DCS1983, Community Member
9/28/09 9:38pm

Hello,

 

My Fiancee' has had RSD for 2 months and it is killing her.  She is currently taking Cymbalta, Lyrica, And Ultram for pain.(This does not help at all)  She is having a rough time coping with this we live in Montana and the doctor up her is very reluctant to help her for her pain we have tried intensive physical therapy with a catheter.  As soon as it was taken out it all came right back.  Please let me know if you have any good advice.\

 

Thanks,

Daniel

Reply
melia357, Community Member
10/ 9/09 11:59am

Daniel,

 

   Hello, my name is Danielle  I myself suffer from RSD. I suggest she tries a pain clinic oppose to a PCP. If she is already seeing a pain speacialist she has a few options. She needs to read up on RSD to know as much as possilbe. You will find alot of doctors out there do not know much on the disorder themselves. Three medications which have helped me out alot are MS Cotion, MS IR, and Valium. The Valium helps quite a bit with the nevre pain believe it or not. One other thing that has helped me is a neurostimulator. They will place her through a trial with the unit before installing it to see if she gets relief from the unit or not. Her pain specialist should be able to preform the trial. With RSD 30% relief with these stimulators is a good outcome. If the trial goes well she will have to see a nuerologist to install the unit. Her pain doctor most likely will assist on the surgery though. They even have rechargable units now. Before you were looking at a battery replacement about every3-5yrs. depending on use and how high it is set. The newer units are to be replaced every ten yrs. battery replacememnts are not to bad. They palce the battery under the first few layers of skin and then run two lead wires to the brain stem. Its very similar to a tense unit but internal. They really help when you are in extreme pain. The unit comes with a hand held remote. Which allows you to turn up the intensity when needed and to lower it when not as severe. RSD is a cronic pain disorder so keep in mind nothing is going to kill the pain completely. These methods will hopefully make it bareable for her. When I was first dignosed ten years ago I thought I was going to die. Thats why finding out all you can on the disorder will help in the long run. I would also suggest a support group for her with others whom suffer from RSD. Its amazing how talking with others that understand what you are going through can help. At first I thought that I was crazy until I met a nice gentleman in my area that suffers from this horrible disorder. I then found that I wasn't crazy other people just couldn't understand what I was going through. They would try but it wasn't a comfort like talking with someone in the situation. Your wife is welcome to contact me at anytime by email or phone. I will list all contact info at the bottom of this comment. I hope this has helped you a little for I understand what your wife is going through daily. It's not easy living this way. Sweating only down one side, having unbareable pain constantly, and doctors whom are not sympathic. I wish you and your family all the best and please tell your wife I'm here for her if she would need to talk.

 

                                                             Danielle

 

email: melia357@yahoo.com

Reply
Aichaabdallah, Community Member
8/17/10 1:59am

Hi

Reply
Kirstene, Community Member
8/ 3/09 9:08pm

See a pain management specialist - I fell 15 + feet and I tore my knee up pretty bad - my orthopedic found it because I could not staighten my leg - I agree - its deep tissue - like in the bone pain - I'm having nerve  block injections - not pleasant - but its something - I can't tell if its working - but at this point - its progress -

 

I'm off, a teacher, and I'm beginning to get worried about my ability to work!

Reply
reruho, Community Member
8/21/09 8:16pm
Ask your doctor for a refferal to a pain management clinic, especially one that has treateed RSD patients. It may take some effort on your part to locate one, by calling each one and asking the question. The sooner the better. RSD can spread. Mine spread from my wrist up to include all my arm, but it has never gone above to the shoulder or below the wrist. Reply
Ann O'Rorke, Community Member
9/17/11 2:59pm

Danielle, my name is Ann O'Rorke I live in Toms River N.J. I have FULL BODY RSD! I also have Fibromyalagia and looks like LYMES too. I have had it for 2 1/2 yrs. Had a terrible accident, when a Walkin Freezer Door (VERY THICK) hit me while I was bent OVER!! The employee kicked it open and didn't see me!! I couldn't Breathe!! I had burning really bad in back and neck. Had herniations already in neck and back burning feet and hands from the accident also. OK Burning back and neck feet and hands. Had epidural in neck BAMMMMMM Spread this horrifying Burning ALL OVER MY ENTIRE BODY!! I went out of my mind....... The pain (you know) is terrifying you think your gonna die! I was putting wet cold towels on my face within a minute the towels were hot!! I'M on Oxy, neurontin, flexeril, oxycodone,adavan, salmon oil pills I Take for joint pain & heart. Anyway. I found a doc in n.j. thank GOD FOR HER! While wainting to see DR. SWARTZMAN in Philly. The WAIT IS 2YRS!!!!!!!!!!!!!!!! Thank god for my other Pain and NEURO  Doc she is both!! VERY GOOD. She wants me to get a c1-2 STIMULATOR. I am SO FRIGHTENED! Thats very high upall the way up! I have to see the Surgeon soon about doing the surgery. My Doc didn't want me to have any Surgerys but she feels this might help me some how. She wanted me 2 get Brain SURGERY! I said FORGET THAT!!!!!!!!!!!!!!! No WAY , I would HAVE TO BE AWAKE!! uh uh .

Please Dannielle I have no Support Group that I go to. Where do you live? I hope you have relief from your Stimulator. How long is the surgery? Did the trial bother you? How does that work? Do you have to feel some relief in order to get the real one? I heard HORRA STORIES. Lots of PROBLEMS . Some say the body rejects it., and you have to hav it replaced 5 Times this guy told me. 5 TIMES!!!!!!!!!! NO way. Thats insane. ALL though More relief sounds great! One more Question Please, I'm Sorry. Does where the Battery goes bother you?

Take Care -- I UNDERSTAND YOU PAIN. I can Help OTHERS WITH MY knowlege, I have never stopped reading, and My Ketamen Infussions help A GREAT DEAL!!

Please call me if you want..732-286-1337, 732-300-7066. 732-210-3526. Im On FACEBOOK...Look For Ann O'Rorke Toms River N.J. That would be Great.

 

Reply
ladonna streeval, Community Member
11/30/09 3:04am

Hi my name is LaDonna. And I know what you are going through.iam going through the same thing.I had no injury to my right foot.I was admitted to the hospital in may of this year.And RSD is what they told me i have.Got pain meds in the hospital,then when i was released,and had to keep going back to the emergencyroom.couldnt get a doctor to give me anything for the pain but nuerontin,and it does not work for me.and finally got my medacaid card,now iam having trouble finding a doctor to help me.I dont have the burning but I have very chronic pain and swelling in my right foot.Iam bed riden and cant work.So my heart goes out to you.LaDonna45

Reply
steph, Community Member
9/19/11 3:46am

i am in the same situation i have chronic pain in my back an right foot, i have had 8 back surgeries, with a lot of nerve damage to my right leg, i have the swelling in my foot all the way up to my knee, and i am hoping i will be getting the nerve stimulate soon, but for any relief i take, 2400mg of gabapentin, 100mg of oxycotin, 10/325 percocet 4 times a day, 600mg of lyrica, and 2mg of clonazepam a day, i am a zombie, but that is the only way i can get up to go bathroom and wipe, or to do my physical therapy, i do on my own every day, i am scared my foot will lock up all together.  i was told to quit my job, so now i have really bad depression,

Reply
tonkytoy, Community Member
10/14/11 5:07am

I was first diagnosed with causalgia (RSDS/CRPS) way back in 1988, before they had any idea what to call it & absolutelyknowing nothing on how to treat it. I had Dr.'s coming in my room, telling me I was rewriting the medical text books, how encouraging that made me feel. Mind you, this was before there was a MRI unit available at every local hospital, I had been having s nearly kicked me in the headome lower back pain & spasms for a couple of months, after injuring myself working as a greenskeeper at our local golf course.

A surgeon had ordered for me to have a myleogram done, where dye is injected into your spinal column, so the injury shows up better on x-ray. As the radiologist was inserting the 2nd needle to inject the dye, the 1st needle which removed spinal fluid to make room for the dye was still in spinal column, he missed with the 2nd needle & hit a periphial nerve that runs down my left leg.

I thought I knew what pain was until that happened, as I was lying flat on my stomach, it felt as if my left leg had kicked me in the head & a lightening bolt shot down my leg. I remember vomitting, heard the nurse say, "We're losing him, we're losing him" & was I went into shock & passed out, waking up back in my hospital room screaming that my left leg was on fire.

I was then rushed by ambulance for a 3 hour drive to the Mayo Clinic in Minnesota, where I was an inpatient for over a month. Ten years later of being in constant pain & numerous hospital stays & seeing nearly 15 doctors, I found one who sent me to a Pain Management Clinic, where I stayed for 45 days & was sent home taking 200 mg's of Morphine ER, 3x's a day, 8 mg's of Hydromorphone, up to 3x's a day for "breakthrough pain," 1 mg of Klonopin, 3x's a day & have been switching from different antidepressants & now another 10 years later, I've been able to decrease the dosage of the pain meds nearly in half from where I started.

I do stay as active as possible, but like many have said, my wife left me, many of my so-called good friends have disappeared from the map. It's a hidious disorder to have & wouldn't wish it on my worst enemy, although I'd like to have everyone have this disorder for just one day, for many just to experience it & for others to shut their damn mouths from whispering, "He doesn't look sick or in pain" & to just mind their damn business.

To everyone with RSDS, never give up, keep searching for the right doctor & keep as active as possible.................................

 

Good luck

Reply
Answer This

Important:
We hope you find this general health information helpful. Please note however, that this Q&A is meant to support not replace the professional medical advice you receive from your doctor. No information in the Answers above is intended to diagnose or treat any condition. The views expressed in the Answers above belong to the individuals who posted them and do not necessarily reflect the views of Remedy Health Media. Remedy Health Media does not review or edit content posted by our community members, but reserves the right to remove any material it deems inappropriate.

By marybeth37, Community Member— Last Modified: 07/06/13, First Published: 05/21/09