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I think my son has CRPS

Posted , 4 users are following.

eva96035
eva96035

Hi my name is Eva, I think my son has CRPS, I had been taking him to my chiropractor for some issues he was having and then all of a sudden he develops pain in his leg , we then get swelling and discoloration, burning and sensitivity just overly tired and drained, weakness and luckily my chiropractor knew these signs and symptoms due to the fact his daughter has been living with this for the past 6:yrs. My son is 15 yrs old and about 8 months or so earlier he was experiencing the same thing in his right arm he said one way to explain the feeling was hitting your funny bone the feeling you get except far worse. He has played football and had an injury to his collarbone he had dislocated it at the sternum and we later found out that he had an extra rib in behind his collarbone and with the injury caused all kinds of entrapped nerves. We went through an orthopedic Dr , a thoracic Dr for thoracic outlet syndrome and then the chiropractor for adjustments to get everything lined back up. His left leg had an injury at his kneecap had been fractured which we didn't even know so now he says the issues are from the neck down, but is worse in his leg, his face has even been swollen on one side. Trying to get in with a Dr that knows something about what's going on with him. Anything that anyone knows about this would be greatly appreciated.

0 likes, 6 replies

6 Replies

  • mary_420
    mary_420 eva96035

    Posted

    Oh wow. Sounds like what I went through. I was about 15 when my right arm started getting that pain and weakness, tingling, and it would swell up and go purple. This was over 30 years ago and not so much was known. I was not diagnosed with CRPS then, but looking back I'm sure I had it. After extensive testing and hospitalizations back then, I was diagnosed with Thoracic outlet syndrome. Over a three year period I had a rib removal, surgical sympathectomy, and carpel tunnel releases before it got better

    Last year I had two foot surgeries which left me with CRPS in that foot and leg, ending up with me unable to walk or even leave my house, and I lost my job. I was an RN that visited people at home.

    CRPS is better known now, but I have found trouble with finding doctors who will treat it, since it's such a complex syndrome. I live in a small town though, so that might contribute. I would definitely do some research and see if there are any specialists in your area that treats this. My love and best wishes out to your son. I ended up being home schooled for the last two years of high school due to this.

    • eva96035
      eva96035 mary_420

      Posted

      Mary, my son is really depressed , he told me last night that he starts thinking about all of the things that he was able to do, that he can't do right now and he said he Cry's a lot at night. He has trouble sleeping a lot and he said it's boring laying in bed a lot which is how he spends a great deal of his time. He misses his friends but said that a lot of them aren't checking up on him like he thought they would and we both know that people can be cruel and since they don't understand they don't think your hurt if something isn't wrapped up or has a cast . makes me very sad . thanks for your post it pleases me to know that others have a heart and just still searching for the right doctor with the right answers.
  • kaye07018
    kaye07018 eva96035

    Posted

    Hiya Eva  I definately think that your son has CRPS.  I was diagnosed in 2003 with this horrible condition.  If you can ask your GP to refer your son directly to a pain management specialist as your son would be going in at the correct department who will be able to get him the help that he needs straight away and cutting out all of the other consultants.  Gentle huigs to you both and I do hope that your son gets help asap.     Kaye
    • eva96035
      eva96035 kaye07018

      Posted

      Kaye, I finally got a referral for a pain management doctor and I have to call and see about setting up an appointment for my son. He is getting very depressed but is trying to stay strong. This first started after a accident where he had dislocated his collarbone and we finally started getting a hold on that where he was feeling better but didn't know about CRPS then. All of a sudden he started having the pain and experiencing the same problem in his leg, that's when we put it together and figured out what we were dealing with. He said that the pain he experienced with his shoulder was really bad but didn't compare to what he's going through with his leg. Since this started he's experiencing pain, numbness & tingling over his whole body but says that it's worse at the source in his leg , but the sensitivity is really hard to explain the feeling. I took him to one doctor that told him what was causing his pain was due to a lower back problem and when we got out he told me that his back didn't hurt and wanted to know why that doctor said that. They just don't get it just because they don't know they want to pin point it to something they know. Just pray that we'll stop having insensitive doctors who don't listen to what you tell them and thanks for your comments we welcome any help we can get.

  • Princess1970
    Princess1970 eva96035

    Posted

    Hi Eva,I'm very sorry but yes it sounds like your son has CRPS.. I was diagnosed last year at 44 years old.I had it for over a year before that..mine is a feeling of razor blades cutting my left hand pain management is the only form of relief I have found.I had a nerve stimulator put in 3 weeks ago and I'm having difficulties recouping from the surgery. From my experience I would take your son to a neurologist to get diagnosed than to pain management, your son has his age as a benefit I've read that the younger the patient the better results for healing.I wish you and your son the best
    • eva96035
      eva96035 Princess1970

      Posted

      Princess, at this moment any doctor that would give him relief would be a God sent. My son is a very strong young man and so full of life and energy when things were normal and it's hard to see him like this. He tries to hide the pain but has broke down once in front of me and it felt like my heart hit the floor. He has fallen several times and has been on crutches for a little over 3 weeks now and it has gotten bad enough where he's experiencing this all over not just his leg. He cried the other day because he couldn't cut up his meat on his plate and realizes that he has a long road ahead of him when something is finally put into play to start making this better. I just hope and pray that the day treatment can finally start is close so the healing process can begin.
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