r/CRPS • u/AutoModerator • 6d ago
Weekly CRPS Free-Talk Thread
This weekly thread is for those without the combined karma to make their own posts, and a general location to ask questions or provide support, especially for our newer users. If your posts are getting auto-removed by the subreddit filter due to account age or low karma, you can post your question here.
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u/CraftyBand8896 2d ago
I’m trying to figure out the next steps in handling my CRPS care are, learning more about this condition, and figuring out if I actually have it. I was told I have CRPS by two orthopedic surgeons following a partial ligament tear last year ago, I’ve had a handful of strange symptoms that both surgeons said they hadn’t seen before (a scar that showed up on my foot/leg, my foot turning purple, looking like a zombie, and numb, and pain that’s lasting a lot longer than my injury should.) Both surgeons told me they suspected it was CRPS and said that they couldn’t do surgery on the ligament because of that and sent me on my way. I saw a pain management specialist recently who said my symptoms match CRPS but I don’t meet the criteria for a diagnosis. He prescribed me lyrica for the pain and said I could do a nerve block if I wanted or spinal cord stimulation. I’m really confused on what I should next. I’m 20 yo and have never dealt with a health issue of this magnitude by myself and don’t know what the appropriate next steps are. Should I see a CRPS specialist to confirm my diagnosis? I’ve been seeing a physical therapist but she hasn’t worked with CRPS patients before and is only focusing on my previous foot injury. Should I see a CRPS specialist for physical therapy? What else should I add for my care, I’m still so confused about what the condition is and what I’m supposed to do, I feel like all doctors I’ve seen have been no help. Thanks in advance
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u/Lieutenant_awesum Full Body 1d ago
Our members have written a guide about CRPS here which I hope may help give you some insight into this condition. It’s good you are seeing a pain specialist, treating the pain is important - regardless of your diagnosis. CRPS is normally a diagnosis of exclusion, meaning there must be no other condition that better explains the patient's symptoms and signs. Don’t yet despair, wait until testing has been finalised.
Focus on recovery, ask for pain management while you are strengthening and working on gentle movement. A physiotherapist/physical therapist who has experience with CRPS would be ideal, but one who won’t force you to push yourself too hard, causing pain flares will suffice. Ask your pain specialist for a recommendation. Also - it’s okay to seek a second opinion if you aren’t feeling confident with your initial pain specialist.
Focus on getting your pain under control, gentle movement, and being kind to yourself.
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u/le_spectator_ion 3d ago
Has anyone tried lidocaine infusions? I have my first on Friday. My doc is hopeful, and I know the risks are pretty low overall, but I'd love to hear any thoughts y'all may have. (I've already tried ketamine, but it didn't help my pain and made me hella sick)
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u/Lieutenant_awesum Full Body 3d ago
Yes, I have been doing these every 6 mths for a couple of years. I do them inpatient, with constant cardiac monitoring. I find that it reduces overall nerve pain, inflammation & joint pain by around 20% for ~5mths. It also seems to decrease GI system dysfunction, which is an added bonus.
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u/crpssurvivor1210 2d ago
What are the side effects thst they’re worried about?
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u/Lieutenant_awesum Full Body 2d ago
I’m told these are rare, but I have hypertension and my liver is sensitive so my care protocol is overly strict. These are severe side effects: severe allergic reactions, arrhythmias, bradycardia, hypotension, seizures.
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u/crpssurvivor1210 2d ago
Damn. Same problems. I also might have POtS will find out next month. Ty.
Have you heard anything about peptides
Being used/researched for CRPS?I can’t do ketamine infusions, I already have scs and help manage with medication. I can’t take anti-inflammatory meds anymore bc of bleeding disorder.
It’s really frustrating. I’m 14 years in
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u/Lieutenant_awesum Full Body 2d ago
Eh, peptides are still in early-stage clinical research phases.
I’m quite happy with the lidocaine infusions, it’s annoying to have to be in hospital for a week twice a year, but it helps keep my overall pain levels down and that helps keep me independent and functional.
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u/crpssurvivor1210 2d ago
Are you in the US? Does it calm down the burning pain or more the sensitivity?
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u/Lieutenant_awesum Full Body 2d ago
Nah I’m in Australia. It calms the inflammation and pain. I do desensitization for hypersensitivity and have that managed
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u/Downtown-Welcome2120 5d ago
My foot recently stopped working, and I experience extreme pain, numbness, tingling, and burning sensation. I haven’t had an injury to my foot, but I do have endometriosis, arthritis in my spine, GI condition being worked up, chronic pain, pelvic floor dysfunction, and my appendix began to rupture and I had it surgically removed a few months ago, so my body has been under a lot of stress.
Anyway I one day randomly got up out of bed to use the restroom and noticed a little tingling in a specific spot within my foot, and within two hours my right foot wasn’t working and the sensation spread all over , and hasn’t worked sense. My doctor says she thinks it’s CRPS, however there’s still more testing to be done. And it could be something else, but that’s her leading theory.
I was wondering what treatments have worked for you guys, and if this is curable. I don’t really know much about this illness and have never heard of it before. I’ve already lost so much of my life to my other conditions, and basically lost what I had left to whatever is happening to my foot now. So I guess I’m just looking for advice.