CRPS

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I have been to see my consultant today 11 weeks after distal radius fracture. I have very little (hardly any) movement after 5 weeks of physio. He has told me today I have definitely got chronic regional pain syndrome CRPS. He says it may never get any better. I am devastated as not able to drive, shower independently, cook safety etc. Pain is tolerable at present but sometimes not. Any words of wisdom out there? I'm in need of some positive vibes and anyone who has this have they got any positives to add .... Please X very depressed by it all. Thank you

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  • Posted

    Hi Vicky if it's any consolation it took 12 months for my distal fracture to be pain free, attended numerous physio sessions I still had stiffness trying to peel veg etc however the pain did go away just left me with a slight ache when I knew I had done too much . Unfortunately I have again had another fall broke the wrist again I have now had the metal plate removed and also carpel tunnel repair so I am cautious to the length of time I will need for the recovery of this surgery. It is a long patient process. Hope it improves for you

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    • Posted

      So sorry to hear you have fractured your wrist again. How awful for you. Hope you are progressing even if slowly. Why did they remove the metalwork? How are they getting the new break to mend ? Just casting?
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  • Posted

    What a terrible dr when I went in 2 weeks after my cast off with pain still my dr told me it was early Crps and not to look it up on the internet because there was not really good info about it and put me on gabapentin and increased pt to 3 days a week now I can almost make a fist and have been using the wrist ad much as possible I still have pain which I hope gets better but I guess the drug takes s few weeks to kick in. My wrist was broken on June 19 and surgery was on the 24. Also my dr also stated that they can dodo do nerve blocks also they say the earlier you get treatment the better the outcome
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  • Posted

    I'm sorry for what you have been going through and although I am not familiar with CRPS (I'm going to look it up) I agree with both posts.  Healing takes much longer than we want it to and even longer the older one gets.  It surprises me that your doctor told you not to check on the internet.  Yes there is bad information, but there is good information to, especially directly from medical sites.  I think knowledge is important.  You may find questions that you need answered and it sounds like the doctor doesn't want  a questioning patient but someone who just accepts his judgement.  You may benefit from a 2nd opinion from a specialist.  What does your physical therapist have to say about your progress?  I know my insurance will not pay for PT if I show no improvement.  They actually measured the increase in flexibility of my joint following my break.  I was also depressed by not being able to drive and exercise and all the things I took for granted.  I was determined to do all the PT exercises I was given and more.  That hard work boosted my spirits because I was doing something positive for myself.  I'm sending you positive vibes and hope you do seek another medical opinion and perhaps another doctor that is more positive.  Best to you.  

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    • Posted

      I am very happy that my md diagnosed me early with Crps and put me on meds my pt has been great I have all the signs of Crps it needs to be treated early for a better chance of recovery I am doing much better since going to pt and meds I feel bad for Vicky because her dr should of diagnosed hers earlier I can't imagine waiting as long as Vicky I am lucky it was picked up st 5 weeks post op

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  • Posted

    Hi Vicky, I hope things are going better for you.  I did look up CRPS on the internet (I like wikipedia) and it is a scary read BUT there are definitely treatments to help.  I would hope that your "consultant" told you much more than "it may never get better".  Since you said that the intensity of you pain changes to tolerable at some times I think that is very positive and shows it can get better!  I did read that the mediation that Cindy takes is one used for CRPS and hope that your treatment plan includes more than PT which is important but it sounds like better results are found with treatments beginning within 3 months.  Your treatment did start within that time frame so that's a good thing.  Check with your doctor to see if there is additional treatment that would be helpful.  2 months of my not driving was a real bummer for me.  More good vibes to you.

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    • Posted

      Thank you all for your replies. The orthopaedic consultant did not give me further information about the CRPS except that he feels the altered nerve pathways may have been triggered by an old fractured elbow I had as a child that I had surgery for twice as it trapped my artery. I lost use of the arm for a year and only regained about 98% range of movement but that didn't ever stop me doing anything. I now with this wrist fracture cannot supinate/pronate and this is what is stopping me from doing anything, coupled with an elbow that doesn't extend due to stiffness after keeping elbow bent and pain in shoulder, biceps and triceps. He has also told me I have developed "tennis elbow" which I had to smile at!! I wish I could play tennis!

      Anyway, he told me to continue with PT and he has referred to wrist and hand specialist. He was going to refer to pain clinic but feels the mobility needs addressing first. I have gabapentin after allodynia after prolapsed L4-L5 and will take those whilst I wait ( this is being done off my own back but will check with GP ) .. I will push on as I cannot believe the CRPS stops the mobility that much. It's not so painful just seems "stuck". Trying to stay motivated. I will beat this. Driving is my goal. Got in the car today just to sit and see what it felt like. I cannot do the brake, put into reverse etc but at least I could put my hands on the wheel!! Keep the positive vibes coming, as I need days where I'm not crying and feeling that this is it!! X

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    • Posted

      I had to chuckle about your response when you learned that you developed tennis elbow because the same thing happened to me except I developed golfers elbow.  I don't golf or play tennis and never heard of golfters elbow before.  It's simply that the pain is on the other side of the elbow from the pain with tennis elbow.  When I was given a brace to immobolize my wrist I couldn't believe it.  "HELLO doc, the pain is in my elbow not my wrist!"  Well it worked and gave me an excuse to never even think of playing golf.  Interesting about the "stuck" feeling. Maybe it's not "CRPS" pain after all.   PT worked beautifully for me but I did the work!  Keep on saying that you will beat this and do the work because you will beat this with patience and effort.  I also had a PT hand/wrist specialist for my hand when I fell a few years ago and a PT foot specialist this year when I fell and broke my 5th metatarsal.  That's why I couldn't drive for months and when I started again it was in an empty parking lot with my husband getting me to and from.  "Hands on the wheel" is the first step to FREEDOM.  More good vibes and keep your spirits up.    Dev's Mom

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    • Posted

      Vicky, my son has CRPS, and yes it can affect mobility that bad, my son got hurt playing football and he kept complaining with his shoulder hurting and my husband took him to one of those physicians care clinic and the woman Doctor or NP looked at it felt, not even where he was having problems, she said it was cartileage and he would grow out of it. He went for a while taking what she had said as right but he kept hurting and it was getting worse finally I said enough and took him to the ER and they did x-rays and his collarbone was dislocated at the sternum and and they referred him to an Ortho Doctor and he said surgery would cause him to have less mobility and range of motion and that it should be right with him still growing. He referred to PT and he was working in there and things just got worse . That Doctor sent him to another doctor like does Thorasic Outlet Syndrome repair and she sent him back to PT, but this time for stretching exercises instead of trying to build things up after a coupld of times he couldn't do that . Then finally one day my son had taken a shower and when he got out he said Mom, my hand is so cold and I was peeling potatoes and I told him to touch me with the hand that felt normal to him first and then the one that was cold and when he did I looked down and his hand was blue. I took him to the ER and they of course checked to see if he had a blood clot and there wasn't a blood clot. I had, had enough and I decided to take him to my Chiropractor of about 27 years and before that we found out that my son had an extra rib right in behind his collarbone and I had never heard of such but anyways the Chiropractor said the nerves were being pinched and he gave him some adjustments and things got better. Well after that he would go in for adjustments ocassionally and things seemed to be much better with his arm/collarbone then one Sunday as a matter of fact this past Easter my son said that his leg was hurting and that it kinda felt like he had pulled something and the next day I told him to go on to school and if things got worse to call me and I would leave work and come and get him. I had no more than got to work an he called and said it was hurting so bad he could barely walk on it. I went to get him and his leg was cold and discoloured and had a bluish tint to it and I took him on to the Chiropractors office because all the other doctors I had taken him to in the past did nothing for him but cause more pain. We got to the Chiropractors office and when we walked in and the Chiropractor saw his leg his ask my son what all kind of symptoms was he having and when my son told him he said oh my gosh you have what my daughter has, he said you have RSD. My son started to ask questions about this and as he explained everything I got really scared but I didn't let my son know just how scared I was, you see with his daughter they didn't have a clue what they were dealing with so she went for a very long time and was in bed for about 18 months and he said she would absolutely scream she would be in so much pain finally him and another doctor figured out what was going on with his daughter. My son had to be on crutches for over 2 months because he couldn't walk with that leg and he would go through bouts of the temperature difference and the hurting, swelling and we tried to find a doctor close to where we live adn either they would say they knew something about it then they couldn't tell you nothing about it or they would say oh I've seen RSD and that's not what he has and try to send him to PT and he couldn't even walk to try to do anything for the pain, then finally it happened one night he woke up to go to the bathroom and he said it was like everything quit working and he fell face first to the floor with crutches still under his arms and he couldn't walk, luckily my Chiropractor gave me his personal number and said if we needed anything to call him or text well that was the night for that. My son had been taking Ibuprophen & Benadryl for the pain and inflammation and he had just been taking one and he ask how long it had been since he had taken any and it had been about 4 hours, so he said to give him some more so we gave him 2 of each Ibuprophen & Benadryl and after about an hour- hour and a half he could get back upon his crutches but things got really bad my son gained from about 143lbs to170lbs from March to June the swelling was so bad that he has got stretch marks down his legs where he had so much swelling. I wish you all the best of luck and hope everything goes alright with you I just wanted you to know some of the ways this can affect you. God Bless you and you will be in my prayers. My son's was caught pretty early but he has alot of nerve damage he now has Tremors, & ticks sometimes and he can't feel temperature very well anymore... I hope that story helps you. I would suggest that you do look this up because it's different for everybody and something might help you,,,

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  • Posted

    Hello Vicky I fell on my wrist again some months ago and the existing plate from a previous fracture had moved, a fracutre was seen on an. X-ray 2 wks.after so my wrist had repaired broke. The plate was removed as it was causing pain also I had to have carpel tunnel repair at same time. I am waiting to see surgeon to review the progress plate removal has made,prior to making a further decision to have ulna reduction as this bone sticks out on my wrist ,my wrist is looking a rather awkward shape, 3 wks since my op,the wrist is really stiff not able to put pressure with my palm down 2 middle index fingers not straightening proper ,hopefully time will see I improve, have been offered no pt? Maybe it is too soon and I am being impatient. Thanks for asking
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    • Posted

      Are you not in a cast/splint? I was under impression when the plate and screws are removed if necessary that the holes left by the screws need at least 6 weeks to fill in so it needs to be treated as a fracture?? I may be mistaken but that might be why pt hasn't been offered yet? Carry on healing slowly and I wouldn't try any full weight moves until you've discussed with consultant

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    • Posted

      Hi Welshsue,  Boy you are having a time of it and I certainly do understand impatience, but what can we really do except wait and see?  Since this is your second go round with the same wrist I feel so very sorry that this has happened to you again.  Accidental falling is a real danger and for me it just happened out of the blue on 2 steps in my home that I have gone up and down many times each day.  Is it that I'm getting older?  Not paying attention (to something so simple as 2 steps)?  It's scary and makes me wonder will it happen to me again as it did to you?  3 weeks after surgery is probably too soon for PT and you also have decisions about other procedures to but you will be seeing your surgeon soon so that would be good discussions to have.  My PT started about 6 weeks after my recent injury and xrays showed the fracture had healed well.  Good luck to you and keep us updated because we care. 

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  • Posted

    Hi Vicky

    I am gutted for you Vicky but don't take his word as Gospe -l keep pushing yourself

    very hard and yes I know it hurts like hell but they can be wrong and you have got to get it to the best it can be. I am 8 weeks out of plaster and I cannot make a fist yet and they too thought that I might have CRPS and they haven't ruled it out yet but I am going to get these fingers moving even if it's the last thing I ever do.

    Keep the faith and I send great vibes through to you.

    Wendy Xx

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  • Posted

     As you, I had a distal radius fracture. And...a dislocated ulna. My surgeon did not notice the dislcated ulna for some time.  My hand surgeon put me in a fiberglass cast. Four days later I went to the emergency room because I thought I was having a heart attack. My blood pressure was 215 over 100. After they took the cast off all was well. I put myself into a splint, and am seeing another surgeon to consult with him about the future. I think my distal is healing in place. I need to learn about the dislocated ulna and what that means to my future. But all my fingers and my thumb is working with little and no pain. Perhaps the too-tight cast saved me from nerve damage.
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