CRPS neuropathy

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My husband was diagnosed with CRPS last August after hand surgery (July of last year) for onset arthritis from a cat bite.  A few weeks after the surgery, he developed pain in his shoulder as well which the doctors have attributed to the CRPS. Now his feet are burning so badly he can't sleep or even walk at times. We have read that CRPS can spread to other limbs, but the doctors are not so agreeable on this.  One said it is possible but not likely; the other had the nerve to say it's in my husband's head (might be dumping that one).  Has anyone had this spread from one limb to somewhere else totally different, like hand to feet?

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  • Posted

    Yes it can spread to other limbs i had 2 wrist surgerys and the last one i knew it was different i didnt like to b touched it burn and the pain was so bad the dr that did ky surgery said i was lieing about the pain and pushed me off like i was just lieing he messed up my second surgery told me i didnt need it but i forced him to give me the surgery which i did not i went to see another dr and he ssid i had it and it was spreading up to my shoulder and down to my right leg i never went back to the dr that did my surgery id get another option bc it does spread it caise extreme pain in ur limbs i love my new dr shes great when i first came in i figured she would b like the last dr but she was upset thay the old dr left me in so pain for months good luck
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    • Posted

      Thank you so much!  I knew it wasn't in his head!  I think it's time to search for a new doc!
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    • Posted

      Yes dont let no one tell him that its in his head theres a reason for pain i knew my wrist was different when id cry when someone barley touched it when i go to stores i habe to hide my arm so no one bumps into me bc ill cry id find a new dr that knows about this and talk to them dr that say its in our head dont know what we go thur bc i told him i wish he felt what i felt where i live theres only 4 ppl who have it and im the youngest out of them he has never dealt with it before i went to 2 other dr he sent me too and spend alot of money to see and to run test and my dr was so upset and wornder how i dealt with it fpr 6 months in that much pain bc he said im lieing and that i just wanted pain pills which i didnt want anytjing for pain i wanted to know what is wrong i dobt like to take meds but thats what he told everyonr i tried to go to until i found someone who told me i wasnt lieing and she would what she could to make me confortable bc now im back to enjoying life and being eith my daughter and haveing another baby on the way id keep looking until u find a dr that knowd about crps amd to keep his head up theres hope out there and he will find it and hopefully feel so much better we all know what it feels like these dr dont
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    • Posted

      Yes, the pain doctor is more sympathetic and helpful.  The hand surgeon is the one who can be a jerk.  The pain doc has helped a lot through nerve block and gabapentin as well as physical therapy. However, hubby doesn't care for the side effects of the meds, and the nerve block made him pass out.  But his hand is better, though not what is was prior to the CRPS.  His feet are a big problem now, so we're looking for help for suggestions for that. 

      Hope you have a wonderful pregnancy and a healthy happy baby!

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  • Posted

    Hi, Let's hope your husband can find some better doctors, has he been referred to a pain clinic yet. Unfortunately the condition can spread and there is plenty of evidence on many websites. The support groups on Facebook have patients who have spreads.

    That's one of the huge problems with this condition that no one treatment works for everyone and there is no known cure. SOME GPs will try to for you off.

    Your husband's shoulder could be muscular related to original injury. Many patients change there posture when they have an injury and this can have an impact as it feels like frozen shoulder. I do know of several people who have asked for referals to the Walton clinic in Liverpool. You can ask you gp for this but I don't know how practical it would be for you.

    Hope you find some help soon.

    My wife has this condition so I know how frustrating it is for you to see your loved ones in so much pain.

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    • Posted

      Thanks for your response,  Yes, he does have a pain doc, and he is the one who is more sympathetic.  The physician who did the hand surgery, which set off the RSD, is the one with whom we are not too pleased.  My husband has done nerve block, which helped a short time, especially in the shoulder, which the pain doctor feels verifies RSD in the shoulder. He's now on meds, which he hates. Still  does physical therapy and a tens unit.  We're so concerned about his feet though.  It's very scary wondering where it will hit next.  Wish we could visit that clinic in LIverpool but we are in the US!  (I'd like to visit anywhere in England!) He's probably going to try another nerve block. The pain doctor feels a variety of treatment is best for RSD.

      Thanks again.  Hope things improve for your wife as well.

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    • Posted

      They say its mostly in the limbs thats it effects i havent heard of it anyone haveing it in otjer places im in us too and it seems like england has more dr and even better ones im going to try scs have u heard of it some ppl dont like it but i have talk to 20 ppl and therr feet and legs went back and they have a pretty much pain free and off meds u can go on tjere website and get a packet of stuff sent to u and u can read it and watch the dvd i thought about doing that bc some many ppl had a great turn out on it and has lived a pain free life even yho someppl dont like it it could really help ur husband i can find my packet and send u the link but its something to help get him off the meds bc i tried the nerve block one made mine even wprse and they said its not normal for it to do that so it made it even wprse and the gabapentin didnt work for me jist made me sick so they took me off i dont do blacks no more bc im terrified that ot will make it worse but the scs maybe something to look into i jeard some ppl dont like it but i was willing to test it out to see and if i did and i had a pain free life then great so look omto it if it will get him off the meds that would h awesome sorry i dont type very good bc my of hand so i hope u can read it
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  • Posted

    i've seen a lot of information on treating CRPS with Ketamine, either high-dose for several days (induced coma), or low dose. High dose seems to work better and is preferable, but not used in the US (?), as far as i can tell. it's not a widely advertised treatment, but in videos i saw remarkable improvements, particularly in Mexico; Total remission. i know of one doctor in Page, AZ, possibly, who uses this.

    it's supposed to break the pain cycle and stop the neurological feedback.

    it's an unpleasant drug (i've had it for dental surgery), but not all that dangerous, from what i have read, and it's not something you take for a long time as with chronic pain meds.

    it's something to look into and thvnk about; if my (possibly) CRPS cames back full-on, i'd rather try this treatment before getting a nerve block, which i have refused so far. (i seem to be in remission, or might not have full-blown CRPS; either way, i can live with the moderate pain for now).

    Best of luck and check out all options. Hope he gets better ASAP.

    (Yes, CRPS can spread. Best to halt it before it does)

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    • Posted

      Thanks for the info.  I'll check it out, but even if it were available here (which I don't know yet), I doubt he would go for it.  Like you, his pain is now moderate, and he is reluctantly going for another nerve block in two weeks.  His pain doc will also be doing an EMG on his feet to see if that is truly CRPS, though I don't put my full faith in that test's diagnosis.  I guess we'll take it from there.  Hope your condition stays in remission.  It is a very puzzling, difficult disease.
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    • Posted

      Best of luck to your husband, and I sIncerely hope he can beat thIs dIsorder, and soon.

      Please let us know how the nerve block works out.

      My paIn doctor wants to use a nerve block as a dIagnostIc tool to fInd out whether or not what I have Is truly CRPS.

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    • Posted

      Yes, my husband's doctor did the same, and the block did verify his having the disorder.  However, I have read that doctors shouldn't use nerve blocks as the sole diagnostic tool.  It more of a symptomatic diagnosis.  My husband's hand used to turn purple and swell a lot.  Since the first block, he hasn't experienced those symptoms as much, though he still has pain.  The pain in his shoulder, where it initially spread, let up after the block but has since returned, another issue with nerve blocks (returning pain).  His surgeon wants another block to determine if his hand pain is more from RSD or the surgery where a bone was removed.  So he'll try one more, though not with much enthusiasm since he almost passed out from the first one.  Right now our concern is that it has spread to his feet.  Scary stuff!
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    • Posted

      Where did your RSD originate, and why is the diagnosis questionable (though it is difficult to pinpoint sometimes)?
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    • Posted

      I'm not sure your questIon was addressed to me, but I thInk It was.

      I had a badly broken humerus, scapula, rIbs and radIus after a fall, then Internal reductIon surgery on both humerus and wrIst. My lower arm was In a very paInful cast for a couple of months; It developed edema, mottled purple dIscoloratIon, excessIve naIl growth, shIny, skIn, etc., but the burnIng paIn was lImIted to the shoulder area. And my arm and armpIt sweated lIke crazy.  My fIrst PT wrenched me Into agony and I dId not start to Improve untIl I dumped hIm and got a gentle one (and an edema glove; I have read that edema Is a major factor In the nerve damage of RSD??). Most symtoms have been greatly reduced, In partIcular edema, mottlIng and  paIn such as burnIng and sensItIvIty. StIll have much muscle/soft tIssue paIn.

      So It's complIcated. RSD was a major concern, but not confIrmed, and the progressIon seems to have halted and even Improved a lot.. My paIn doc really lIkes to gIve nerve blocks, (probably pay well, the cynIc self says), but none of my other doctors recommend It, and I doubt It would help at thIs poInt.

      I'm very glad that I do not have the full-blown profIle, and feel much sympathy for anyone who does.

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    • Posted

      I just remembered somethIng; the other names of RSD, what I call CRPS, my OccupatIonal therapIst calls  Hand/Shoulder Syndrome. 

      LIke your husband, I had bone removed as well, (the ulnar styloId; sneaky; they never told me. After the swellIng went down, I notIced: "Where dId It go?"). 

      WorkIng on the scar, (I mean REALLY pullIng on the adhesIons, quIte an unpleasant feelIng) has loosened the skIn, blood vessels, and, I assume nerves that were stuck to the bones. I belIeve thIs greatly Improved the swellIng and dIscoloratIon In my hand. Just a thought.......

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    • Posted

      Your case sounds very similar to that of my husband, other than that the causation of his surgery was a cat bite (he's a pet groomer), and the surgery caused the CRPS.  He had all the symptoms you had, thus the diagnosis of CRPS.  An EMG and the nerve block (supposedly) verified it.  Also like you, the pain in the hand seems to be other than just CRPS.  Adhesions are a possibility, something we've thought of, but the surgeon doesn't want to admit to that yet, which is why he wants another nerve block (like that will prove anything at this point).  We're going to check to see if pulling on the adhesions might help, but he has pins that were placed there, so I don't know about that. We keep suggesting to the surgeon that the pins might be the issue, but he just writes it off (not very happy with the surgeon at this point).  In the meantime, we'll see if the next nerve block offers any results and we just keep praying it doesn't spread any farther.  We're also praying the EMG will tell what's going on with his feet.  If it's the CRPS, I'm frightened for how it's progressing.  If it's not, then we need to find out the cause.  

      I can't believe they took out a bone on you and never said anything! We don't put a whole lot of faith in doctors, much preferring a natural route (and God!). But sometimes we do need them and just hope they know what they are doing and have our best interests, not insurance payments, at heart.

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    • Posted

      The foot spread sounds very troublesome, although I have read about It.

      I could not begIn PT on my hand untIl the pIns were taken out, but mIne were temporary pIns, I just went along wIth what the therapIst told me to do after that. 

      I'm gettIng neuropathIc paIn In both shoulders that has to do wIth the cervIcal vertebrae. I've had It before, but It came back because of thIs Injury. I have to be very careful to keep It under control wIth posture and exercIse.

      Perhaps the mechanIsm of the spread of RSD has somethIng to do wIth the nerves where they exIt the spIne; I read that that It can get worse because of "guardIng", whIch can make a person more crooked, whIch effects the spIne alIgnment, then the rest of the body.

      If he has the whole profIle In hIs feet, edema etc.,I have no Ideas, and heaven help hIm. Hope he's In PT or OT; a good physIcal therapIst wIll at least talk more than a surgeon. MInImal paIn durIng PT Is best, but they do stIll cause some paIn to me, anyway.

      My surgeon Is very good, but not about tellIng me detaIls; I lIterally had to corner hIm wIth my x-rays and a shoppIng lIst of questIons. The bone (good-sIzed fragment) removed was from an old fracture non-unIon; It had never been treated and healed OK so It wasn't essentIal; stIll, they mIght have told me they took It, don't you thInk?. 

      Work on the adhesIons wasn't too aggressIve; I watched vIdeos about It, also my OT helps me. It hurts some, but more lIke an IndIan burn than a broken bone. Maybe he could do some gentle pullIng and rollIng on the scar? Compare the looseness to the unInjured sIde and try to match It. Not to the poInt of bruIsIng or severe paIn, though. AdhesIon treatment takes a long tIme, lIke everythIng else.

      Are hIs pIns screw-lIke? MIne were just very thIn wIres through the ulna and radIus to keep me from rotatIng my wrIst.

      *ALSO*: What about InfectIon? A cat's mouth carrIes an abcess-formIng bacterIa; I see abcesses all the tIme In cats that fIght. Have the docs looked Into possIble bacterIal InfectIon and reactIve arthrItIs etc.?

      (I was on mega-IV-antIbIotIcs due to the compound fractures.)

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    • Posted

      Yes, it all started with a cat bite, though there is no infection in the bone.  However, somehow the bite caused onset severe arthritis. Within two days of the bite, the bone at the base of his thumb (bite was farther up the thumb in the fleshy part) swelled to the size of a small egg. We went to the ER and then an orthopedic doc, but there was no infection in the bone.  After several months with a waste of a hand doctor, our family doc finally sent John to another ortho guy who sent him to another hand doctor who is supposedly one of the best on the East Coast (U.S.). He did the hand surgery to remove the arthritic bone which was totally rubbing against another bone with no hope for any relief in any way but surgery. HA! Had he known what was coming, John says he would have lived with the arthritis pain.  (BTW, no one can explain how the bite trauma caused the arthritis.) It was supposed to be a six-week recovery which is now going on eight months.  So he has "buttons," not really pins, which are supposed to replace the bone. The surgeon did say the buttons could be removed, but since CRPS "doesn't like surgery" as the pain doc says, he is stuck with the buttons, I guess.  About three weeks after the surgery, when he should have been well on the mend, the hand turned purplish, swelled up, burned, tingled, nail stopped growing, hair stopped growing, and you know how it all goes.  It moved to the shoulder pretty quickly; now his feet are a problem and the other hand is starting to hurt.  The pain doc did say at one time that he had advanced RSD, but the nerve block did seem to halt some of the symptoms in his hand, like the discoloring, the swelling (though still stiff) and the shoulder pain, which has come back.  The surgeon wants another nerve block because he thinks a miracle is going to occur, I guess- not that the Lord couldn't do that if He chooses!

      I don't know.  I'm so sad for my husband and others like yourself who are going through this.  I am a high school teacher and about twelve years ago one of my students developed RSD from a broken foot.  She is now wheelchair bound.  So sad.  

      We will share the info you have given with the pain doctor (whom we like much more than the surgeon) and see what he has to say.  

      Thank you for sharing.  We all need to uphold one another, which I guess is the purpose of these discussion rooms.  It's good to hear the experiences and share the burdens of others going through the same stuff.  

      May the Lord bless you!

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    • Posted

      it's all so complicated, and how do we know when to stop digging?

      But,

      the arthritis and the reaction to the cat bite sure sounds like an infection to me.

      Just an anecdote:

      The most painful thing i went through after my fall:

      i woke up from surgery with an infection on the fleshy inside of my arm and torso. No one would look at it, even the surgeon refused; they just pumped me full of more and more antibiotics. By day 2 it had formed a silver-dollar-sized hard black necrosis. Hurt like nothing i have felt before or since, and scared me half to death.

      it was 8 days of antibiotics before i could see a ER doctor and have a culture taken, which of course showed nothing after the antibiotics, so i never found out what caused it, (bone puncture? spider bite? surgical accident? MRSA?)

      i guess my point is, infections can be overlooked, and hard to diagnose, when so much else is going on.  

      Mine did clear up, and the flesh wound has healed.

      Don't know what to advise, though.

      Bless you and your husband, too.

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    • Posted

      Yikes!  That must have been awful!  I can't imagine not doing some testing on that way before they did!

      But John did have tests for infection and was on many antibiotics before the surgery.  He even went to an infectious disease doctor who found nothing in the bone or even any cat bacteria elsewhere.  His thumb was a very angry red the day after the bite, at which time we went in a BLIZZARD to the Urgent Care who gave him heavy duty antibiotics.  But even after that with various other doctors, he had been on others.  So I don't think infection is currently is an issue, but thanks!

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    • Posted

      it's all to much to figure out, but so often it's up to us, because the doctor doesn't have time to do thousands of hours of research on every patient.

      (i can understand their side, too, but it is frustrating.)

      At any rate, i really, really hope your husband improves, and soon.

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