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Fear crps spreading to all 4 limbs but worry about telling people

Posted , 6 users are following.

Monkaygirl
Monkaygirl

Hello, I am hoping to find someone with crps who can help?

Had bad fall, elbow dislocated and fractured badly.

Had radial head replaced, soon after surgery surgeon noticed classic

symptoms I was diagnosed

with crps in left arm, elbow and hand. My arm is locked at the elbow

as if in sling. I think this has spread to other arm but am unsure if it's official.

I now have extreme stiffness in both legs unlike anything before but

I am fearful I will be regarded as just overreacting and stiff as

I am not out and about as much. I fear its crps spreading.

Does anyone else feel severe stiffness in legs . I also have cracked skin

on both heels?

Looking for thoughts ? 😊

0 likes, 9 replies

9 Replies

  • diane28105
    diane28105 Monkaygirl

    Posted

    Hi,

    My heart goes out to you,I know how fear can grip.

    I too had a bad fall and was diagnosed with CRPS in my hand.The best advice I was given was to keep  the affected limb moving.I now have residual CRPS but I am living with it and no longer live in fear.

    I saw many so called experts on this but the most useful was the head of physio at my local hospital.

    Be positive!

    Love Diane! 

    • Monkaygirl
      Monkaygirl diane28105

      Posted

      Thanks for replying, feel little bit better after talking to hand

      therapist and reading your reply. I am going to try to relax more.

      I will talk with pain specialists too. Some symptoms are so

      Confusing, what are your symptoms?.I wish you well too.

    • tary
      tary diane28105

      Posted

      Hi Diana,

      3 month ago I fell and broke my humes bone on 3 places. Plates and pins ensure that that bone is secured for life. Unfortunately a nerve was damaged during the surgery which meant I had no feelings in my hand. Pain was obviously On the card. But when my wrist and hand started being the major source of pain, I knee something was very wrong. 

      Eventually I got my hand x-rayed and what a mottled mess of de-calcified doves due to CRPS. 

      on the positive side, I have a brilliant team of rehab physio's and chiropractors that all all working with the orthopedic surgeons to get it back working.

      the brain is a mysterious and complex creature. Some medications will assist with nerve recovery, and some external machines to stimulate the nerve...with all this working together I am hoping for a recovery within 9 months.

      i wish you all the best, remember that your emotions feed your brain too, so try to stay as positive as possible, and never push yourself into more pain because that it exactly where your brain is right now.

    • All_good
      All_good tary

      Posted

      Hi there I just registered on here and came across your post I was hit by a suv when my dog ran off and I ended up with a broken ulner bone and rsd in my left hand, and in my arm. I was lucky that my orthopedic realized that I rsd right away and I ended up at a pain management Dr to start treatment. I should of had surgery on it to fix the brake but due to the rsd they couldn’t do anything many casts, and physical therapy for over a year I had the therapy I got the hand back to almost all of rang of motion back but it was a hard road. And I have pain 24/7. I did have blocks from the beginning and all sorts of meds trying to see what works. It's been 7 years and I still see a pain management Dr and try to just keep going forward. I know it's the hardest thing that I had to learn is fight the pain every day from the day I got hit to today. And pain makes us change over time so just hang in there I know easer said than done.

    • tary
      tary All_good

      Posted

      Thanks for your story, it's encouraging to hear that you got the use back of your hand. I have no idea of how long 7 years are (pain wise), but I take my hat off to you as you sound still positive and optimistic - good on you. Again, thanks for sharing 

  • Laney_Lu
    Laney_Lu Monkaygirl

    Posted

    I was diagnosed with Fibro and OA in 2008. Back went out in 2012, all Dr.'s who looked at MRI's and ex-rays said they couldn't see any reason why I was in so much pain, and there was no reason to do back surgery. I lived in Maine for 53 yrs, moved to Sierra Vista, AZ July 2013, 3000 miles away from all I've ever known and knowing no one here, that's how bad the pain was. I was literally butcherd by a back surgeon which has led to a Fibro flare becoming so bad I could not find anyway to relieve pain that would be full body, or both feet, or shoulders, or arms, or hands. It's like CPRS travels where ever it wants. Today I can use my hands, other times I can't even text. As for me, I believe crps affects all parts of my body. Hope you find relief.

    Elaine

    • Monkaygirl
      Monkaygirl Laney_Lu

      Posted

      My crps has definitely spread and is now recognized. It is a

      horrible condition and I feel for you.

      I am getting relief from lidocaine infusions, perhaps you can look

      into this?

      All the best

    • andrea11745
      andrea11745 Monkaygirl

      Posted

      Hi there

      I.was diagnosed with RSD/CRPS 3yrs ago in left arm after herniation discs in my neck. Shortly after diagnosis it spread to left leg (which is far worse than left arm ever was). I just spent 11 weeks this winter in hospital with uncontrolled pain. 8 weeks in ICU. We even tried a ketamine coma for 6 days that was unsuccessful. Ketamine infusions helped pain temporarily, but the spasms in left leg left me rolling in bed in agony. Finally docs found a pediatric orthopedic surgeon who inserts baclofen pumps in spinal column for children with cerebral palsy, and they flew me to another city where he was and after countless blocks, infusions and 2 neurostimulators that never worked, something finally worked to stop spasms. It doesn't help with pain but when leg is not spamming and meds are working I can function somewhat. Apparently they can add other medicines to this pump and are considering ketamine as an option. I believe at one point while in coma they also did a lidocaine infusion but I don't recall...do you get these infusions regularly or just as things flare?? I'm curious as I'm now having some symptoms in right leg as I had a fall last November with neurostimulator making leg give out..I know the future is uncertain but I just keep plugging away knowing we all have our challenges. I wish he you all the best in your journey and hope these infusions are giving you some relief.

      Andrea

    • Laney_Lu
      Laney_Lu andrea11745

      Posted

      Wow Andera, what a powerful message. You're living what so many people are clueless even exsists! I do pray for all who suffer this. My pain has increased, have had 3 flares in 1 month, one lasting a week. 

      I do not know how you do it. I pray you do feel God's love, comfort, and His peace! I will live in today. Pray for all who are in pain, pray He heals us, carries us when in this pain. 

      Sounds like you have family or someone who is helping you with getting the care you need. 

      God bless you with His love!

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