Just Diagnosed

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Hi my name is Jenell I'm 30 I was recently diagnosed with CRPS.. I have nonidea what is happening and what to look forward to. I had ankle surgery 8 weeks ago and the pain and swelling was just not going away .So we tried gabapentin for nerve damage wasn't working so now I'm on lyrics and had a nerve block which also didn't work.. Can anyone help me to learn some more of what the rest of my life is going to be cause from my understanding there is no cure.

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  • Posted

    Sorry to hear you're not healing well. I'm fairly new to CRPS - had hand surgery 10 months ago and have been dealing with it since. If your surgery was just 8 weeks ago, I would highly encourage you to go to physical therapy or continue with it if already going. Make sure your therapist is familiar with CRPS. It is my understanding that an early diagnosis along with the right therapy can greatly reduce CRPS length of duration. With a good chance of complete recovery. I had an excellent therapist who actually started therapy for CRPS even before it was diagnosed. I am certain without that my condition would be even worse. I recently had an mri that shows I had a nerve damaged during surgery, so the odds of my neuropathy and CRPS disappearing someday aren't great. But please speak with your providers about continued PT. I think you are early enough in the diagnosis to see a real chance of great improvement and / or total remission.

    Best of luck.

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    • Posted

      Thank you for your words of encouragement .. I am being set up for Physical therapy just waiting for them to contact me. I am hoping for good results I've read as much asni could about all of this and it seem so diabilating. I'm trying to do all i can to make the symptoms ease off.. as of right now i still can't walk right it's almost like my ankle is stiff. AN the pain is awful at times.. so hopefully the therapy works. Thanks again.

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    • Posted

      I'm so sorry. I to was just recently diagnosed with CRPS II. I was in a really bad ATV accident 3 years ago, leaving my leg in a bad way. I had 3 surgeries in a short period of time; leaving me unable to hardly walk, extreme pain with fatigue. So after the possibility of CRPS, I went to see a pain management doc. I ended up 3 months back getting the spinal cord stimulator, which helps with the nerve pain. Im now walking and doing things I've not been able to do since my accident. I still have to take pain meds, but my life has changed drastically. Still bummed I've had flare ups, but its so much better. You just recently hurt yourself which seems pretty quick for a diagnoses as these injuries can take awhile to heal. So hoping as time goes by that things get better.?

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    • Posted

      Thank you for sharing with me.. I do hope you find relief. YEA I have never heard of this before I was diagnosed. THE Dr was very adamant that the pain should be gone and the swelling and I should be walking none of they above has happened. I am is so much pain worse at night my foot is blotchy and purple and burns something terrible. Are You able to work? Thats my biggest fear I am a can and work 8 to 10 hour shifts on any given day and I fear that will no longer work for me.
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    • Posted

      Hi jenell99737

      I'm sorry to hear you have ended up with this awful syndrome, I think you mean Allodyina that you have with it. That alone is a nightmare. I guess you can't have anything touching it I can't even wear a shoe or a sock I live in shorts and lay in bed with my leg hanging over the edge I had an accident 15 months ago, I severely damaged my right ankle, tibia & fibula after two Op's & several months of uncontrollable pain which nothing could explain till I was told I have CRPS from a Pain Management Specialist at our local hospital they tried everything they could . After several months and getting nowhere and by now on so much heavy nerve & pains Meds I was transferred to The Walton in Liverpool a CRPS centre. There I was told there that CRPS can go way in the first 10 months on its own I am now past that time so I am awaiting on trail for a Spinal Cord Stimulator now but at the min you are still in the early stage, so don't let time pass keep thinking positive and keep pushing for treatment as leaving it alone isn't worth it.That can cause more problems as I now have no connection with my lower leg I've lost it in my minds body map, plus mine has spread all up my leg to my knee and they now think I maybe developing it in my hands so get as much treatment as possible

      Keep positive and good luck

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    • Posted

      Ohhh you poor thing. I was lucky and had a desk job. But finally 3 years after I was let go... At that point I was down to part time. Because of all my pain I simply was struggling. Currently I'm not working and recovery from surgery. Im slated to start the first of the year. But i still have days I'm stuck in bed hurting and so tired. Not sure how I'm gonna get a job like this?😞 being on your feet all day...wow I don't know how you'll be able to?

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    • Posted

      Oh my I am so sorry to here.. I am going to do everything I can to make this not as terrible as it could be. I am awaiting a phone call from physical therapist and I have a aoot to a pain management clinic alsoni see my foot Dr every week to have a local nerve block which the first one didn't work so hopefully the next one does.. I'm trying my best to stay positive uh unfortunately I still can't walk right I have to use a cane it's almost like my ankle joint is stuck. I had to have a cartilege replacement done and I'm praying this doesn't mess up the healing process . Thank you for sharing your story with me. Hearing from other who suffer from this helps tremendously!!

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    • Posted

      Unfortunately I don't think I will be able to do what I love ever again. Breaks my heart. But I will find something that will work with me and this condition.

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    • Posted

      I will never be able to do the stuff I'm passionate about to my full abilities. I love riding and some of the technical things are simply no longer realistic... But... At least I can ride. Its gonna be hard to ground myself and try not to attempt things. So I have to be thankful for what i can do! If I wasn't able to do them, I dont think I'd be able to endure my life. I will say a prayer for everyone drsling with these things. 😭

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  • Posted

    Hi Jenell

    I'm so sorry to hear about your diagnosis. This is an awful disease, but as has been previously stated there is evidence of lesser symptoms, better pain management (although doesn't sound like you have that yet..) And even some people (younger you are helps too), go into remission. So hopefully your early diagnosis will be in your favour. Having said that it sound like your ankle is pretty involved.. With colour change etc. I myself am an RN that has had to give up my beloved career after an injury to my neck that caused what we thought was radicular arm pain but actually was start of CRPS, so I was treated incorrectly until a correct diagnosis 3yrs later.. Unfortunately not long after it spread to my left leg and now have issues with gastroporesis as well. I have just (within 3weeks)have had a spinal cord stimulator inserted for leg and am going next week for surgery to insert one for the arm. It seems to be helping somewhat although I have been in and out of flare up last year with unbelievable pain that only IV ketamine (which is an anaesthetic) would touch. I suffer from significant allodynia in my arm and upper leg that leaves me exhausted after showering and dressing some days.

    Keep yourself informed, find yourself a really great pain specialist that is proficient at CRPS and who most importantly understands and believes you. There are all kinds of great drugs and lyrica is one, as well I'm on long acting narcotic (which I hope to decrease with stimulator now) and medicinal marijuana. All that and I still don't sleep well and still have pain everyday. It can mess with your head and you need a strong support system and a good therapist as it's also known as 'the suicide disease'.

    This is a great place to find comfort and advice from others going through it and we all have a different story and experiences and that can be helpful (I have found to be so)

    Do you have some long term benefits from your work? Someone to help support you while you're off? You maybe some significant time even with best therapy and docs getting things settled down and not to mention it is incurable and is expected to get worse overtime If not caught early.. Fingers crossed for you that this is the case. Don't hesitate to ask any questions

    Good luck our new 'warrior'

    Andrea

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  • Posted

    Hi Jenell,

       I don't have CRPS, but my son does he had a football accident and dislocated his collarbone from the sternum, we didn't know this for quite some time. My husband had run him to a clinic to get x-rays but instead they felt, said it was cartileage and he would grow outta it. He kept hurting and saying something just wasn't right but didn't want to dispute doctor then finally one day he came and said Mom my hand doesn't feel right, it's so cold so I was peeling potatoes and I told him to touch me with the hand that wasn't cold first and when he touched me I jumped it was so cold and looked and it was a shade of blue it had a bluish tint and I took him to the ER and they automatically checked for a blood clot which he didn't have. Of course I had never heard of it either and we found out he had extra rib behind his collarbone and it had those nerves compressed so he saw an Ortho doctor for a while  and they sent him to physical therapy for a while and that got to bothering him really bad. He was sent to another type of doctor and then finally I said we've tried all kinds of doctors and nobody seems to be able to help so I took him to my Chiropractor and things started to improve and things seemed like they were going in the right direction then all of a sudden He was walking on Easter Sunday and he said it felt like he had pulled a muscle of something and the next morning he said mom I don't know what's wrong but my leg hurts bad and I told him to go to school and if he got to feeling worse to call and I would come and get him. I had just got to work and I got a call and he said Mom I can barely walk on my leg it hurts so bad. I left work and went to the school and got him and I thought well let's start off in the right place this time and avoid all the run around we did last time so I took him to my Chiropractor and told him what was going on and he ask to describe the kind of symptoms he was having and when my son told him He said I know exactly what's going on with you, you have what my daughter has and he started to explain about RSD/CRPS needless to say my son was on crutches for over 2 months and we started out with what my Chiropractor had told him to take he called it Ibu/Beni which stands for Ibuprophen and Benadryl he took them in combination with each other and that helped with the swelling he was having. He also got started taking B-12 which is suppose to help the nerves to heal but my son went from 143 lbs to 170 lbs and he still takes his Ibu/Beni. B-12 and his RSD doc put him on Lyrica at night. My son takes 2 Benadryl, 3 Ibuprophen, and 1 B-12 3-4 times a day and once the med's got in his system good he has lost back down to 153 lbs. I hope you can get a hold on this but there's just so many doctors who haven't got a clue, because I had to travel to take my son 131 miles one way once a month so it's really something. I wish you all the best of luck and I hope you do really well since your not that far into this horrible disease. May God Bless You, keep us updated...

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    • Posted

      Wow.. Thank you so much for your story. Opened my eyes that mine could be a lot worse. I hope your son continues to have relief. Yes I am starting at the beginning of this terribke thing I don't no which way to turn. Its all because of a nerve that was damaged during my surgery. I too have a discolored foot but mine it very hot just in the area of the nerve I have the burning pain as if my foot is on fire and I still can not walk right. This devastates me.. this was not suppose to be the out come. I was suppose to be pain free.. but I'm looking for answers hopefully starting ohysicitheraoy soon whichbive seen a lot of people saying but made things worse. An they suggested a pain management clinic not sure how I feel about going that route.. But thank you again for sharing your sons story helped out a lot..

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    • Posted

      Hi, I developed crps after surgery for fractured wrist. I have the discoloured skin, sweating of limb, extreme hair growth, altered sensation (allodynia) and pain but my biggest problem is reduced mobility and range of movement. This was diagnosed 16 weeks after injury. I am awaiting a second opinion beginning of October but further surgery would be tricky and a difficult decision as this could exacerbate the condition. Pain is controlled most of the time on gabapentin, ibuprofen and paracetamol. I also take high dose vitamin C and have done since before diagnosis as I believed I may be developing this. There is good research Out there about Vit C doses.

      I don't know what the future holds for me either as at present I can't work as I can't drive and my work is reliant on driving and being in physical good health, but I'm not giving up ... Yet!! I have weekly physio and weekly OT physio which helps the movement by doing everyday things in a different way to encourage you to do things "without thinking".

      I hope things work out for you but please remember you are still early in your recovery regarding the surgery so hopefully, things will improve for you but it's a slow process. Good luck. Ps - there is a good forum on the CRPS site that you may want to join

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    • Posted

      Thank you so much for sharing.... I go to the de on Thursday so hopefully no can getbthe ball rolling for physical therapy and pain management as Evey day goes by the pain gets worse and the stiffness is terrible. I'm hoping for the best.

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    • Posted

      Jenell,

           I always try to share because I know with this everyone is different and some have it worse than others but needless to say if you can get a jumpstart on this thing it will help out immensely on your pain and duration on how long it is bad that's what I've heard a faster diagnosis is what you want so that maybe you can go into remission sooner. I think they should've already had some answers considering that this thing has been around for over 100 years and they should've already have a cure by now... I know Benadryl and Ibuprophen you wouldn't think they would have the effect that they have but they are good. I will go into more detail but I have to go out the door here in a few I have an appointment with my workers comp doctor about my hand... Have a wonderful day and God Bless you and I hope you have answers really soon ...

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