Treatment options for CRPS

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i recently saw a Pain management doctor who said from the sound of it i may of had the CRPS in my affected left foot since the second surgery which happened in june of 2016 he prescribed me gabapentin and a ketamine ointment to help with the pain, the gabapentin really just puts me to sleep and doesnt help the pain he gave me 3 treatment options lumbar sympathetic injection, ketamine infusion treatments, or something placed into my back.

I've scheduled myself for the lumbar injection but the Pain doctor doesnt think it will help.

what opinions do yall have on these options?

who knew crps was so expensive.

0 likes, 4 replies

4 Replies

  • Posted

    Hi Lur,

    I'm sorry to hear you have started on the journey that is CRPS, but you are not alone and there are many support networks that will help in coming to terms with CRPS.

    I was diagnosed back in 2012 and since then I have had many varied treatments with varying degrees of success.

    Treatment wise although CRPS is little understood in everday life, if you have got a good team around you consisting of consultants, pain nurses, and physiotherapists your treatment options should be well thought out and discussed with you. Also it might be wise to ask whether psychological support is available, you may not need it initially, but it is always good to know it's available.

    I have found through my journey of CRPS that whilst some treatments haven't worked for me, they have had amazing success with others. My advice is to always try the least invasive treatments first and progress through until you can find something that works. It might end up having to be a combination of treatments but if it can give you the relief you need then it's going to be good. You may get discouraged if a series of treatments aren't working for you, but have faith and give each treatment a fair go before wanting to move to the next one.

    For the record I have ended up with a DRG (Dorsal Root Ganglion) stimulator, which in principle is similar to a SCS (Spinal Cord Stimulator) in which small electrodes are implanted close to the nerves as they exit the spinal cord. A stimulator device (similar in size to a pacemaker) is inserted so that it can deliver a small electric current which helps to block pain signals from being transmitted.

    The DRG stimulators are used when CRPS is more localised to one particular area (I have CRPS in both knees) A SCS will still do the same job, but the coverage is greater and so unless an entire limb is affected DRG stimulators will be discussed as an option first.

    I hope I have managed to answer your question about treatment options, but feel free to reach out to me if you require any help or support with your journey.

    Stay safe,

    Russell

    • Posted

      Hi, Russell. I did in fact go with the least invasive treatment options, it did in fact give me comfort for about 6 hours my affected limb was finally warm for the first time in idk how long. People always think it’s weird when I say my foot is cold, but to the touch it’s a normal temp so it’s always hard describe. my parents keep trying to tell me its because I don’t have any circulation in my left foot but I know I do bc it’s throbbing and feeling crazy.

      I see my pain management doctor on Wednesday to go over if I need another injection I’m just not so sure because each injection is 9,670 & my insurance only covers 5,500. I don’t mind paying if it gives me comfort but the injection only did for 6 hours, I mean now the pain isn’t as bad but I can still feel it? So it’s like it worked but it didn’t do the job all the way.

      I don’t want any stimulator or ketamine infusions yet, and that’s only bc I’m so young and my parents think it’s to early to say it’s CRPS they don’t believe it.

      I had a therapist ( she knew of my condition ) but always felt the need to tell me about anything I did wether I was in the wrong or right. She always said I was right about EVERYTHING and it was a lie and everyone else was all booked.

      I have severe depression, anxiety & ptsd but I’ve been working on it myself & it’s going pretty good.

      I just want to feel better w/ my foot.

      I’m not sure were I’m going next about my options & opioids aren’t an option for me & that’s always a good thing!

  • Posted

    blocks never worked for me & I have opted out of any type of surgery, spinal cord stim ect im just to afraID AS MY CRPS us the direct result of a brachial plexis nerve injury I cant take chances as it is already bad enough

    • Posted

      hi, i recently did the block on the 26th meanwhile it worked for about 6 hours my left foot finally didn't feel like it was frozen ( when I or any one touched it felt warm ) but it would be freezing I'm not sure how normal that really works out since it was warm to the touch so it was weird and hard to describe.

      my parents want me try whatever will give me comfort but its hard because theres not so many options for me to choose from.

      i did notice my foot is not in constant pain but its still in pain, and i imagine it will always be. I'm just upset at the fact that I'm twenty one and i can't ever have fun with out being in pain ( this weekend i was dancing & fell ) and it hurt so much. Not sure if i mentioned but i have several torn ligament in that foot that cant be repaired so im always falling. i can have the ligaments fixed if they can control the CRPS but as for now i get to keep falling.

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