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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


In 2004 I had a bad fall, I broke my tail bone and damaged some nerves in my right leg. Back in Sept of last year, I fell again, hurting my back once again. I went to the dr, I have Spinal Stenosis, Degenerative Disc Disease and some Arthritis in my spine. I've had MRIs, Bone Scans and Xrays. In April my leg gave out and I hurt my right ankle very bad, I was already going to the Pain Clinic for my back, I went in with a very swollen red cold painful foot. I informed the PAC that my mother in law has RSD, when my mother in law seen my leg, she asked me what my symptoms are, after I told her she said my leg looks just like hers when the RSD first took . The PAC tried so hard to say it wasn't CRPS, everything from shingles to some other limb problem. I walked out of there in tears, Well I hobled out lol. The next day I went to my family dr and told her what the PAC said,she gave me another set of xrays just to make sure when I fell the swelling wasn't a broken ankle, she came back in the room looked at my leg and said that is NOT shingles that is CRPS. I went back to my pain clinic and the PAC sent me to a dermatologist, again CRPS.. My pain PAC tried everything to make it seem like it wasn't CRPS, I had sores on my leg.. Finally after 2 Dr's so far saying yes it's CRPS she started to give me Sympathetic nerve blocks. By the way, at this time I've Never met the Pain Clinic Dr, just the PAC. The first one worked great, I went from a 9 to a 3. It lasted a few weeks, I went back for my follow up and she had me set up for another injection, again worked well for a month or so. She set me up with this rehab place that uses lasers on the affected area for CRPS, so I went to the appt with them. I laughed at that guy, when he said we will be putting a laser on my leg the size of a ink pen. I can't even have pants touch my leg how in the world could i live through that. So I went back to my Pain PAC and told her, I wont go back there. I will do PT but not that kind. That made her a little upset. Well I shut my pinkie in the door, in Aug The sensitivity started the swelling in my left hand, everything that first started with my leg. She had me go get an xray, my finger was broken, she flat out told me CRPS doesn't move.. So I came on here and asked the wonderful people on here about it, and they all said they are living proof it moves and CRPS/RSD has a mind of it's own. I went back and told her I can get about 10 peoples stories, of experiences with CRPS/RSD, including my mother in law. She just walked out on me. Well Since I wouldn't go back to the rehab place she sent me a letter saying they wont treat my "Right leg pain" anymore. They just stopped doing anything for my back, when my leg started. I called my new family dr *my family dr moved back to her home town* and let her know that I wanted to switch Pain Clinics I wanted to see a (DR) who knows what CRPS/RSD is not some PAC who doesn't know crap. Like i said in my post a few weeks ago I was having horrible leg cramps and through out the day I just kinda tried to walk them out, and I was walking to my daughters room and a leg cramp hit me so hard I dropped on the floor in tears, and the result from that my toes curled under all distorted my foot makes a L Shape, my foot is very weak, hard to walk on. I can't move my toes or my ankle. THe PAC has been upset with me a few times, I missed an appt because my daughter got very sick and we had to go to the ER, so I missed my appt. I told her I'm a Mother First, a Crohns Patient second and living with CRPS 3rd.

Sorry that I just wrote a book and it's probably moves around a lot, My brain burps a lot lately lol.
i DO understand the brain blips,believe me. i am wondering if you have ever had an actual full spinal MRI. what you are describing,among other symptoms in the right leg really sounds like there could just possibly also be some spinal cord involvemnt,it just needs to be ruled out,ya know? those "cramps" you have been having? do they actually "feel" like real cramps or more plain old spasticily like episodes? having your toes suddenly turn under shows a lack of the finer motor functions of your muslces being involved in some way. you have the very same type of adductor and abductor muscles(only a bit different) in your toes as you do in your hands. when i suffered severe spinal cord damage to my unlnar and median nerves(the fie motor parts) i also had my fingers start to curl under on me and a huge loss of strength when it came to pushig or pulling with them too. i had to wear a special lumbrical brace over part of my hand just to keep those fingers from curling under on me,then do alot of different strengthening excercises to at least get back some of that muscle control,unfortunetly i did lose eight fine motor muscles anyways(that was a surgical loss/damage). but the loss of tone could be a spinal thing. it should just be ruled out at the very base,in your spinal cord. you have taken a few falls which could also have impacted certain problems or exascrbated existing ones which made them more pronounced.

i would really try and obtain that full spinal MRI with a contrasting agent and also try and track down an ortho who actually knows what the heck RSD is and the best ways to treat and monitor it. i lucked out with mine,thank god,espescially since i needed surgery on my RSD affected knee,two actually. he just knew all the right things that needed to be done in order to try and prevent worsening of my sympoms and pain and to also try and prevent that possible bilateral spead. you NEED knowledge and experience in your treating doc with this syndrome,just so you know they have things handled and just know what to actually watch for as far as any real possible changes that could be related to RSD.

just whats the deal with that laser thing? and whay wouldn't you actually wantto try it? just curious,as i never heard of this before? please let me know some answers to the questions i asked. do you actually know for certain what set off your SNS damage or where for sure? my SNS was damaged right inside the spinal cord level where it just starts to go outside and form that SNS chain that runs down alongside both sides of our spinal columns. right smack at the c 8 nerve level.

right now,your biggest need is for knowledge and experience and that full spinal MRI.you simply do not have a clue as to what is really going on in that cord or spine til you take that good hard look. its just some level of spinal involvement could explai alot of what you are experiencing withinthat right leg, but SNS could too ya know? you just really need to rule out that spinal as a possible contributor. good luck hon, please keepus posted. marcia





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