What have you tried for CRPS?

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Hey everyone,

  I have CRPS for 2 years and it has recently escalated from my left foot/ankle/leg to the entire right side of my body hip/back/shoulder/arm/wrist/hand.  I have been seeing a Pain Management Doctor since I was diagnosed and have recently been told that we are hitting the end of the road for treatments.  I feel like that road was very short!  Here is what we have done.   If you have tried any of these let me know if they worked or did not or if there is a treatment that you have done that my doctor is not thinking of. 

1.  Physical Therapy with Hydro / Gentle Range of Motion with Land

2. Gabapentin   (Had to stop due to side affects hair loss)

3.  Lumbar Sympathetic Nerve block

(This worked year 1.  Had relief after each shot and by the third I was functioning with 2-3 on the pain scale.  This year have had two shots.  First minor relief for 4 days and second none.  Will be trying one more time in a month.)

4. Nortriptyline  (Had to stop due to side affects hallucination being the worst)

5.  Lyrica  (Sister drug to Gabapentin.  Waiting for insurance/workmans comp to approve)

If Lyrica does not work my doctor says we will try sister drug to Nortriptyline which is the last option.   She has mention Ketamine drip but advised insurance generally will not cover this and it is $450 an hour and I would need 4 hours for the first treatment.  Will also be asking workmans comp insurance about this.

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13 Replies

  • Posted

    I'm on gabapentin but also high dose vitamin C. Research it. I didn't think it would do anything but thought it was worth a try. It's certainly dampened down some of the effects of the CRPS. Worth a go! Fortunately, I'm an NHS ( uk) person and I can't get my head round your insurances not paying for drugs and treatments so ready available here! Sorry you have to wait or not get what you deserve :-( horrid disease 

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  • Posted

    I've had CRPS for over 20 years, if there's a treatment or drug out there, I've tried it ;-P. I've had it in my left arm for the full two decades and in my left foot for just the past two years. 

    My experience with the nerve blocks was the same as yours--great relief in the beginning but less and less as time went on. 

    I've tried Lyrica. I had great results with it--so fantastic that I was able to get off some of the other pain medication and I didn't even care about the 30lb weight gain (most people gain 40, so I counted myself lucky). But right around five and a half months, it stopped working. (If you research it, you'll find tons of testimonials that say it stops working after just six months. I wish I had known beforehand--I wouldn't have gone to all the trouble suffering through withdrawal on the other meds. BUT, for me they were a great five and a half months. 

    I've tried the Ketamine infusion as well. The CRPS was migrating into my jaw, and my doctor had hoped to stop it. The infusion worked for that, permanently removing the CRPS pain I'd sometimes feel creeping up my neck, but it didn't do anything for the established CRPS I'd already had for years, though I didn't feel anything while getting the infusion except an unsettling paranoia--no pain though. 

    The ONLY thing that has ever given me significant relief over a long period of time is the Spinal Cord Stimulator. I had one implanted two years after I was diagnosed (18 years ago), and it enables me to go back to college, finish my degree. I got married, started teaching...it was wonderful until a botched battery removal ruined it and not only made my current implant unusable but also impossible for them to give me a new one (the wires were in the way). That was ten years ago. 

    Technology has come a long way though. I'm lying in bed now, recovering from surgery. They gave me a new SCS, able to work around my old one, and it's life changing. I can walk without a cane, more than that, with no discernible limp! I can use my hand without pain. It's given me a 70-90% pain reduction depending on the day. 

    Has your doc talked to you about the SCS? I would ask him. 

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    • Posted

      Any back problems due to the machine like pain later on or soreness? I was diagnosed witgh crps 2yrs ago and am now faced with the stimulator as my last hope. Have been looking for pros and cons before I do it. Everyone's telling me to get a second o pinon but none of them understand this nerve disorder and hhow much pain it is causing me.

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  • Posted

    Hi, sorry to read you're having such a tough time with your CRPS. I tried a  ketamine/lignocaine infusion however it was aborted due to severe dizziness & vomiting. Hopefully, your insurance approves it and you get good results. Are you able to continue with hydrotherapy or some gentle movement, my physio made the statement "motion is the potion" and its embedded into my brain. 

     

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  • Posted

    I was diagnosed with CRPS about 8 years ago...red/purplish coloration and mostly severe burning sensation and knife like feeling when weight bearing.  Went through months of pain management, nerve blocks and was told there was no cure.  Then ran across a natural (which I normally don't believe in) treatment to reset the autonomous nervous system between leg and brain...3 months of immobilization, elevation and sensitivity therapy with an anionic polyacrylamide cast that held heat and cold alternating in 8 hour periods.  Had relief after 12 weeks and complete cure after 24 weeks...no recurrence 8 years later.  Good luck with yours...I know the frustration of being told there's no cure and then nerve blocks and ketamine treatments and all these treatments that did nothing while your life is on hold.

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  • Posted

    I've tried water therapy, which did nothing so my insurance said they would no longer pay for it.

    I've had multiple sympathetic nerve blocks that did nothing.

    I've had two epidurals which also had no effect.

    Multiple medications, but now Dr will no longer prescribe any more as they don't work.

    I've been left with my last 2 options:

    A spinal cord stimulater, which I will do the trial hopefully in January 2018 and if it doesn't work, my last result is an implanted pain pump.

    The road is very short if you don't respond to the most common methods they use, and sadly most insurance companies will not pay for Ketamine infusions which cost upwards of $10,000.00 per infusion....and I have excellent insurance. Sadly, here in the US there are not enough specialists for CRPS and we tend to get left behind. I've had to switch pain Drs numerous times and its beyond frustrating. Just don't give up and be your own advocate.

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    • Posted

      Neridronic biphosphinate infusions have put my crps into almost total remission! Almost full function in my right hand with physical therapist that specializes in hands!

      Best wishes,

      Stephen

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  • Posted

    I had a permanent SCS inserted approx 6 weeks ago. I have found it to be beneficial and it has helped in the regulation of temperature and colour in my arm/hand. It has also reduced the deep bone pain I use to experience in my forearm when the weather was particularly cold and burning when hot. Initially I was resistant in pursuing SCS. I didn't want a foreign body and the restrictions it brings. However after having the trial and the improvement quality of life; I felt it was worth pursuing. Wishing you all the very best with whatever pathway you choose,

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  • Posted

    I have completed four infusions of neridronic biphosphinate. Almost complete remission! Almost all pain gone! Using physical therapy with a hand specialist. Close to 100 percent function in my right hand! Finished last infusion 12/15/2017! I expect,over the next few months,all my pain left will be fully resolved!
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  • Posted

    I have everything ! except ketamine and a spinal insert. What woeked for me was four weekly infusions of neridronic acid(a biphosphinate). Not available in USA. I went to a clinical trial. Greuenthal pharmaceutical sponsered. the trial. I do know if it is still available in US. Only other choices are in Italy and Germany. FDA has it on a fast track for approval. I hpe it will approved for sake of fellow sufferers. If you can afford a trip to Italy I would go! check the internet for cheapest treatment in Italy! Wishing all my fellow sufferers the best!

    Thank G-d I am alnost completely pain free! 95% plus. The affected part of my body is working almost 100%!

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    • Posted

      There's a trial available in Mentor Ohio for Neridronic , however you spell it lol. Its 14 months long. Not sure if they're still taking applicants but its worth a try if anyone is close to Ohio.

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  • Posted

    My CRPS was diagnosed in November 2017. I tripped and fell at work in May 2015.

    Work comp won't approve anything, no meds no nerve block nothing.

    Pain is sometimes excruciating. Thankfully I'm in California and have taken the "herbal" route.

    At this point my attorney and I just want to settle the claim for a whole bunch of money. Don't know if I'll ever work again, for now I'm doing the best I can living with the pain.

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