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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


My wife is 27 years old and otherwise healthy until last fall.

She was working and twisted her knee. Approx 4 months later, she was diagnosed with a blood clot (DVT) in her thigh after complaining to her Doctor that she had a "charlie-horse" type pain in her thigh. Good quick diagnosis by her Dr on this one. Up until and including this time, she could walk fine, albeit her knee was sore and would limp a bit. A few weeks after her DVT diagnosis, her lower leg and foot started to be painful. This is supposedly somewhat common for DVT in the leg so she was told to keep her foot raised as standard practice, and this indeed helped her pain. However, it has persisted until this date (5-6 months after her DVT diagnosis) and she cannot keep her foot "down" for longer than a minute without it being in pain. During visits to the hospital we put her in a wheelchair so she can raise her leg. She also gets a "shooting" type pain behind her knee at times... but the foot is the big issue. Her foot is not really "swelling" or anything, just painful and going pinkish or purplish at times and feeling hot.. although if her foot is kept down (ie - if she is standing) it may indeed swell a bit, but we're not talking ballon size, but since it is painful we never let her stand for more than a couple minutes. Raising her foot over her heart level returns it to normal relatively quickly (within a few minutes). Her doctor did not think that her leg should be giving her this much trouble with a "textbook" DVT and referred her to a Hemotologist (for input with any associated problems with the DVT).

The Hemotologist suggested RSD as a possible diagnosis (due largely to her symptoms and the fact he had it himself a few years earlier) and to make a long story slightly shorter, eventually got a bone scan which the results were inconclusive for RSD, but did show some injury to her knee and her Doctor was not ready to diagnose RSD based on the results.

She was refered to a Rheumitologist for an opinon on the leg who is also somewhat "stumped" but believes that treating her for RSD may be wise as he can't think of any other diagnosis that can make her foot painful for no other apparent reason. The treatment he is suggesting sounds like a bone-building drug that is given via IV. I don't write the name of it, but he said it is somewhat costly (not too much of a concern as either insurance or WCB will cover it) and the only side effects are flu-like symptoms for a week or two. He said there is really no harm in this treatment even if she does not have it, so it's worth a shot.

We see a Orthopedic specialist in a week.

So - synopsis is this. Injured knee in Octobor. Diagnosed with DVT in March. April/May foot/leg pain becomes severe enough to no longer work and has to stay at home with foot elevated. Pain behind the knee which we "believe" is DVT related (as it is near the actual clot).. but who knows. DVT is now approx 6 months past and should be past or finished. Get a veinogram in the next couple days to verify. Foot is not swollen, but does change color somewhat and has a temperature change to both hot and cold. Raising foot alliviates symptoms greatly. Does not require pain medication for foot (as it goes away when risen), but does take Codiene for knee at times.

We purchased a recumbent exercise bike so she could get some exercise for her legs which she does everyday, but is limited in time as her foot is lower than her heart during this time and thus starts to hurt.

So, my question is this. Does this indeed sound like a probably case of RSD to you folks that are suffering/have knowledge on this disorder?
well... in ways it does and it doesn't sound like rsd to me. i mean granted there's a huge long list of symptoms for rsd, and all of us just have a few, more or less then others, but i none of us, somebody please correct me if i'm wrong, can make our pain go away by merely elevating our affected limb or area. the majority of us are on pain meds, usually narcotics (and not small doses), or we've under gone more invasive procedures called nerve blocks, or have spinal cord stimulators, or have pumps that give us meds.... i'm not saying she doesn't have rsd, i hope she doesn't. i just don't know if you could classify it as rsd when she can elevate her foot and her pain is pretty much gone. all of our pain is constant no matter what we do, usually ranked pretty high on the pain scale all the time. if its rsd you'll want to see a pain management doctor, maybe even go see one now since your still trying to figure things out. i just know that if i could elevate my arm and my pain would go away i wouldn't have had 3 shots in my neck, and would be getting ready to have a surgery to have a spinal cord stimulator implanted in me so i'm not on narcotics for the rest of my life. you should really read the first few sticky posts on here so you can get a better understanding of what rsd is. her other symptoms seem to matcn, but the pain, and the elevation don't really click for me... maybe it makes sense to someone else on here. but that's just my opinion.

i hope you guys get i diiagnoses soon, i know how waiting sucks. you should look into seeing a pain management doc anyway just for another opinion, because that's who you'd want to see for rsd anyways, so.... but if it is rsd don't but ice on the affected area, it makes it worse, just heat. like heating pads.

~andrea~
Thanks for the response. I am also revising my OP as I said originally she twisted her anke, which is untrue. I meant to say her knee.

I appreciate your response. After the "pseudo" diagnosis of RSD I have been doing some research on it and as you mentioned while some of the symptoms sound like it (temperature and color change), others don't.. specifically her foot was not injured directly which is where this seems to be worse, and the pain does go away.

I was seceretly hoping in a sense is WAS RSD believe it or not as it would be nice to know what it is and begin treatment, but boy, after doing some reading on the pain you victims of this terrible disorder endure, I now hope it isn't. I was hoping for first hand opinions from you folks to give your input based on the symptoms as my thoughts could be biased.

I appreciate any thoughts though. Can anyone with RSD make the symptoms go away by elevating the limb/effected area? How about at first when you were just developing it early on?
Hi - I may be the oddball here, since I have been diagnosed with RSD and have similiar situation as your wife. My RSD started in my foot after a bunionectomy on 3/23/04. My Physical Therapist and foot Dr. had me doing a lot of weight bearing exercises etc. Two months post op my foot began burning, turning purple, cold at times etc. Now where we get similar...I had to be on pain meds all the time I was weight bearing. I would sleep 4 hours a night on meds, about 1 hour a night not on meds. 4 1/2 months post op I finally saw another Dr. that diagnosed me with RSD and a Metatarsal head that was not completely healed. The built up scar tissue which created pain when I walked aggravated the RSD. I was told to get off my feet except a few minutes at a time. Much of my RSD symptoms are minimal now because I am off my feet. I cannot sit on the couch, as the foot turns purple and begins to hurt, if I lay it on the couch it is fine. I can walk about for a few minutes and it is fine. I begin seeing tomorrow a Pain Management DR., a neurologist and an orthopedic surgeon that all specialize in RSD. I have had to take no pain meds since the fourth day after being off my feet. Has your wife had any burning with discoloration in the past, but not now? My Dr. feels mine is early and that is why the pain is more easily managed. Just wanted to share and hope this helps...Keep us up-to-date....Beth
[QUOTE=despnhurtn]Hi - I may be the oddball here, since I have been diagnosed with RSD and have similiar situation as your wife. My RSD started in my foot after a bunionectomy on 3/23/04. My Physical Therapist and foot Dr. had me doing a lot of weight bearing exercises etc. Two months post op my foot began burning, turning purple, cold at times etc. Now where we get similar...I had to be on pain meds all the time I was weight bearing. I would sleep 4 hours a night on meds, about 1 hour a night not on meds. 4 1/2 months post op I finally saw another Dr. that diagnosed me with RSD and a Metatarsal head that was not completely healed. The built up scar tissue which created pain when I walked aggravated the RSD. I was told to get off my feet except a few minutes at a time. Much of my RSD symptoms are minimal now because I am off my feet. I cannot sit on the couch, as the foot turns purple and begins to hurt, if I lay it on the couch it is fine. I can walk about for a few minutes and it is fine. I begin seeing tomorrow a Pain Management DR., a neurologist and an orthopedic surgeon that all specialize in RSD. I have had to take no pain meds since the fourth day after being off my feet. Has your wife had any burning with discoloration in the past, but not now? My Dr. feels mine is early and that is why the pain is more easily managed. Just wanted to share and hope this helps...Keep us up-to-date....Beth[/QUOTE]

It does sound quite similar, doesn't it? Up until Aprlil/May, she had no discoloration or pain with the foot.

Luckilly, we have a relative that is a physician and we spent several hours talking to him last night and he gave us some things to ask her family dr for and references (IE - Chronic Pain specialist, pain clinic and some drugs to try).

Please keep me informed as well Beth, I am most curious to learn how you go.
Hi Spud - Spent most of the afternoon with Pain Management Dr. He was very thorough and spent 3 hours with me and really messed up his schedule. I definitely have RSD, most evident by osteoporosis in my foot, other foot has none. He explained to me that my nervous system is still on high alert and that if I tried to stay up and act normal all my earlier symptoms would come back. He explained that he has had a few other patients react this way but is not the overall norm. He said the difficulty for me will be to address the great toe issue in order to alleviate the pain from that which surely flares all the RSD symptoms. He believes I have a little scar tissue, but thinks the original podiatrist overtightened my tendons during surgery. The ortho he wants me to see specializes in foot bones that are slow to heal, reconstructive surgery and RSD. Problem is he is booked solid for next five months. The PM is concerned I will begin fracturing my foot because osteo is so bad so he personally called this ortho to squeeze me in. I have to take all my "films" and history for last six months to ortho tomorrow and he will determine if he needs tobegin seeing me and squeezing me in. He would have to fit in a lot of appointments. This Doc is really really good, Chairs the North American Musculoskeletal Trauma Education Committee and is on the editorial board of the Journal of Orthopaedic Trauma. It is great he is so good, but downside is being able to get in. This Doc may decide to send me to another Doc in the Institue. After reading about him, my problems seem small compared to most of his patients. My PM is putting me on Neurontin (ugh) says if I don't fare well he will change it. Feels it is safer on other organs than topomax and many of his patients do well on it. He is very aware tho of the controversy and that some patients can't tolerate it. I will also have a pain patch along with Hydrocodone. He said we'll talk blocks later as we progress into the orthopedic problems. Feels I could not tolerate any surgery on big toe and that's why he wants me to see this really good ortho cuz he's in a quandry on how an ortho can fix this without causing RSD to get worse. At any rate, I feel confident I am at the right clinic ( or I should say Institute) and with some good Docs, now will come the long haul.Doc says key is to get rid of all pain in foot while still being up on it to keep vascular system moving. Once pain is gone the goal is to encourage the nervous system to go off the alert. This is primary. Let us know how your wife fairs and what the Doc says. He also gave me prescription for special support hose in hopes to help the blood from pooling in my foot which is what is causing the purple. I will keep you informed in hopes it will help you and your wife....hang in there!! By the way, I just read on a site in the Netherlands that they classify some RSD patients by "hot" or "cold". Some RSDers react with a warm foot, hand,etc. Some react with a cold limb. Some neither. The report said those with warm usually respond to treatment better. Don't know if this is widespread belief among USA RSD doctors but just sharing what I read in that med site in Netherlands. My thoughts are with you as wait....Beth
Hi Sharon, Andrea and everyone else,
Its been a long time since I've posted here although I have been reading the boards now and then. I have just been so consumed by pain and meds and insurance and doctor woes...well, you must know what I'm talking about. Anyway, I'll try to get some of what I what to tell you out tonight and continue with more another night...I feel preety bad and can't sit too much longer.

July appt w/ PM DR said RSD. Had one block at hospital with floroscope due to all the instrumentation I have in my back. PM said he wanted to see clearly where he was injecting me (scar tissue in there by now - surgery 3 levels in april 04). Block did nothing! PS-EMG shows severe nerve damage L4/5 w no response.

Next, started PT prescribed 3xs a week by both my NS and PM. Physical therapy has helped my back to heal greatly. I do my exercises at home on days I don't go to PT.
I take 600 mg neurontin 3xs a day and vicodin (finally down to only 1, maybe 2 vicodin a day). Have to take the neurontin or else I get terrific flareups of the RSD!

I have had 4 major flareups with the RSD since July because I was also trying to wean off the neurontin. I won't do that anymore! RSD was only in my left foot and lower leg back then. NOW it is up leg, across buttocks/hips and starting now down right leg and foot although not as bad yet as left side. Hips are really bad though and limit the distance I can walk to only a couple of blocks to my PT or food shop then I have to come home and rest. If I force myself to do something the whole day, say from 9-4, I suffer a sudden attack of screaming pain that leaves me out of condition for 2 days. So I now know I have to pick one thing to do each day and no more.

NS, PM and PT doctors sent me to my primary to test for other stuff due to other complaints such as neck pain and sensations in back of head, chest pains (I have sinus bradycardia and my primary wants a nucleur stress test.) besides difficulty walking, some dizziness, headahes etc. After this this testing and an MRI of the brain and an MRA of the Brain and caratoid (I also have some slight blockage my primary has been monitoring), well after all this my PM will try some other meds for me. He talked to me about the Stim and blocks but said to get all these other things checked out first so my primary just gave me the scripts for all the testings. I will call tomorrow to schedule the tests.

Now that I have filled you in on all this I am going to stop now. My foot and leg is starting to swell and burn and guess what?? Started yesterday, my hands are getting the same symptoms too??? Can it go from lower to upper?? Hands are swelling, burning, numbing and a few lightning pans have surprised me. Hope not cause my only joy is playing guitar once in a while now and I hope I don't end up loosing that too!

Anyway, I signed on to ask a few questions concerning doctors, lawyers, SS and other stuff but I shouldn't make this any longer tonight so I'll leave it here for now and continue during the week. Let me just say, as I read all of the RSD posts I see we are all in the same horrible boat and my heart goes out to you all. Especially all you who are alone and out of work now, lonely and broke to boot, as I can relate to that. But thank God I know God is with me 'cause without Him I definitely could not do this!

Oh, my butt and leg and foot is burning now and I can't sit anymore! Can't stand now either, I'm too tired, and when I raise my leg by laying down it sets off the shooting pains (guess 'cause it presses on the nerve in my spine.)

I'm so sorry for typing so much. My fault for not keeping up all these weeks. I will try to keep future posts short with just current stuff and my questions I didn't get to. THANKS for listening! Be well everyone.

(PS The election stuff has been keeping my mind busy so thank God I'm not too depressed now a days. Each day I go for a short walk, maybe 2-3 blocks, PT said to make sure I do it or else I won't be able to do it, and I listen to the radio as I walk with my cane. What a sight I must be! Ha-Ha)

Mollybrown : cool :





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