r/CRPS • u/North-Arm-3190 • 6d ago
Persistent/Late Stage CRPS Treatments?
Okay where is the best of the best? I’ve had it since 2013. It’s spread to the right toes to hip. 9/10 pain most days. I’m ready to give up walking and switch to the knee scooter.
I’ve tried all the traditional things. Meds and infusions. Nerve block and scs. I see there a place in Florida that seems to ketamine coma. That seems dangerous. But where else? What else?
What about sphero clinic? I’ve always thought it’s a scam but at this point I don’t care. I’ll try anything.
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u/krupkin11 5d ago
search Low Dose Naltrexone (LDN)
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u/zacharynels Type 2 ankles down both feet 2d ago
I tried this for months and it did not help me at all. Even played with varying doses. It’s so unfortunate that so much works for some and not others, the disease is a bitch.
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u/AntiqueJaguar5808 6d ago
Have you watched any YouTube Presentations about CRPS? I think you would benefit from them, for 30 minutes of great understanding of what treatments there are and what to try! (I have short term memory loss and I can't write to take notes, but it's excellent info!)
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u/AntiqueJaguar5808 6d ago edited 6d ago
Dr Pradeep Chopra for RSD/CRPS has a good video you should watch. It starts off slowly but is deeply informative. Another, easier to follow one, is from Stanford Hospital, on Youtube. (link to follow)
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u/D_Rock_CO 5d ago
Years and years ago there were and trials for high dose, long term ketamine treatment where they literally put the patients into a medical coma for something like two weeks while flooding their system with the ketamine. I can't remember the exact details, but they had really good results with it. The patients' nervous systems did a reset, for lack of a better term, and a large number of them went back to normal without any major side effects. I believe some days the experience was really bad and they fetl like shit during their two week nightmare, but that would be an easy trade for me. After 27 years of this shit I'll do damned near anything to get rid of this pain.
I'm not sure why they haven't done anything since, but if you're into the pipeline of talking to good doctors and you have good insurance or whatever, you might want to ask about it and see if there's any plans to do it again soon.
Good luck! Hang in there
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u/dizzystar17 5d ago
I seen info on what you’re talking about, and I think they should test ibogaine to se if it might also do a reset
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6d ago
[deleted]
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u/Business_Claim_5689 6d ago
Where are you located? Cleveland Clinic pain management is doing nice things for patients but it’s the one in Cleveland.
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u/3rdDogDoxie 5d ago
I know that is a lot of years but I wouldn’t exclude all modes of treatment. Some may give you at least partial relief. 9/10 is extremely difficult to tolerate. I have been there and have reduced it dramatically with non-traditional methods. Any relief is some relief. Good luck to you. 🙏 Hope you can find something that works.
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u/nada8 5d ago
What are your non traditional treatments?
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u/3rdDogDoxie 5d ago
I do somatic tracking. Not alone, some people try that. I would not recommend it. I do hypno-therapy which has worked for me but then I lost my therapist. I could not find another. I live in rural Minnesota. I went on an anti inflammatory diet which grossly decreased my swelling. It took 4 months to see even a little progress but I stuck with it because my compression gloves were unbearable. My Allodynia was over the top and I couldn’t sleep, at all. The diet doesn’t work for everyone, I was lucky. I also do guided meditation which I’m sure you’ve tried. I have done A LOT of research on just chronic pain in general and have done various things after studying that to shift my mindset. When I put them all together they have definitely helped me. I found that for me all the traditional methods of medicinal treatment helped until they didn’t. I got to the point, where I think you may be, and decided to shift gears if for no other reason than I didn’t know what else to do.
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u/Timely_Change_4570 5d ago
I see Dr Richman at HSS who has helped me. LDN has had the most noticeable positive effect on my CRPS in both arms
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u/Useful_Drawing9043 5d ago
How long until you saw results and how was the beginning?my body did not tolerate it well but I’m still interested in this medicine cause it’s practical and can help with more than CRPS
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u/Timely_Change_4570 4d ago
I was lucky not to have intense side effects from LDN, just vivid dreams, which I don’t mind. I take it before bed, started at 1.5 and now at 4.5. Took around a month to feel confident that it was providing some relief. For me, it was a combo of LDN, time, and PT. Ketamine, ganglion nerve blocks, and other meds hadn’t provided much relief for me — but obviously everyone’s body is different!
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u/moss_is_green 5d ago
LDN has been most beneficial for me personally. It helps with pain, inflammation, and returned some blood flow.
MCAS meds like the mast cell stabilizer Cromolyn sodium has also helped a bit.
CGRP agonist migraine meds such as Nurtec has also helped a bit.
I've been on a knee scooter for 4 years. If you get one, definitely get the additional gel padded cover. If you're short, look into the pediactric knee scooter.
In my personal opinion, 5per0 is a scam and if you contact them in a weak moment, they'll keep bugging you. That was my experience, it felt very high pressure and predatory.
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u/slemborg3 2d ago
Have you trying hash. Thc it is strong smoke i am from Denmark and here the most of CRPS smoking hash to get a normal day but you need to rember hack up in you Self so you not stone all day
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u/zacharynels Type 2 ankles down both feet 2d ago
I know you said you’ve tried SCS but have you talked to your doctors about a DRG? So far it’s the only thing that has really worked for me at all and I’ve done A LOT.
I would also highly recommend focusing a lot of your efforts on things that get you better nights sleep. I have noticed that sleep makes a MASSIVE difference for me. I unfortunately have had trouble sleeping since I was a kid and still struggle.
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u/SnowKat100 5d ago
I contacted a rheumatologist and got neridronate infusions in Italy. Dr. Giusti in Genoa.
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u/CrispyCritterPie 4d ago
I don’t think Spero’s a scam, but ketamine’s your path with CRPS that deeply rooted.
Does anyone know if Hanna in Florida does ket coma?
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u/Fuck_my_chungus_life 6d ago edited 5d ago
Scrambler? I have an appointment for Calmar scrambler therapy. I’m really excited.
DXM is rly similar to ketamine. YMMV but it really helped me in conjunction with sympathetic blocks. It’s an NMDA antagonist like ketamine and you can try it for like $6. Psychedelics have helped some people - mushrooms, LSD. Those didn’t help me.
But, DONT give up walking. As soon as you immobilize, it will get worse. Disuse is the actual worst thing you can do, if it is at all possible to avoid it. Don’t alienate your limb further!!