Want to talk with others. Have you found relief from CRPS?

Have you tried Ketamine infusions?

Scrambler therapy did me wonders!!

Good for you! Focusing on what I CAN do instead of what I can no longer do also. I line up “projects” that I can do and try to retain the great memories of athletics I enjoyed throughout my life…my daily life remains full. My projects have to stay out so I can move from sewing to wood projects, cleaning to menu planning, and now I’m learning to knit 🧶 on Utube. Mostly to keep my mind focused on something besides pain. Stretching, strengthening and meditation throughout the day

Yes, The series of Ketamine helped me climb out of a deep depression years ago

There is a wonderful positive support group on Facebook Positivity Rsd/crps.org. I do Ketamine infusions and use the nasal spray in between boosters. The group has a nightly video. We go over books one chapter each night. The founder was in bed over 20 years. Amazing how she is now . We have a lot of fun and laugh. I have had 2 failed Spinal cord stimulators. They are great for some neuropathies, but never crps. I have type 2 from direct hit nerve damage. X husband caused it. The files in the group have loads of information. I have tried everything. The group saved my life. Hope you check it out. Your friend, Doreen

Thank you, hope to see you there!
Hugs, Wendy

Hey there,
My son is 42 and approximately 10 years ago. He broke the cuboid bone in his foot and it would not heal. It turned into CRPS.
We went to Emery and Atlanta with no good outcome whatsoever. He finally is seeing a foot Doctor Who has done some laser treatments, which really do help to calm it down when he has flareups. Most doctors don’t know about this condition or even how to treat it. When my son first was diagnosed with it, he did not walk for three months and was 32 years old and with a family and a great job. It has been a difficult journey to say the least, but the foot doctor that he found who is familiar with it has helped him tremendously. Unfortunately, it never goes away, but I understand that Mayo Clinic does have doctors that specialize in this condition. Wishing you the very best and I am so sorry. No one realizes how bad it is until you or a family member have it.

Not all Mayo campuses are the same. Mayo in Rochester knows how to treat this! It’s called a sympathetic block, and it doesn’t mean you want sympathy, it quiets the sympathetic nervous system that has a short circuit problem & doesn’t know it should shut off!
So the block is the test for CRPS & it’s also the treatment 🎉
After the block, my pale cold painful foot, turned pink and warm for the first time in years!
The next day, I walked to the test room, with 0 pain and no limping! It was like a miracle!
It lasted 6 months but I just went to get another block, that allowed me to get back to work & enjoy my life!
Afterward that one lasted 6 months about, Mayo sent an order to a local pain management anesthesiologist & he did the future blocks locally.
Which was a relief b/c Mayo was a flight away!
So there is hope & it’s worth the pilgrimage up there.
I saw 6 “experts” in my city & they hadn’t a clue what it was, why or what to do.
One even said I might be faking it! Oh I cried when I read that & the Mayo doctor said, sadly many ppl are told the same thing just b/c it’s just so rare.
But -It was first noted in the civil war, and was called Reflex Sympathetic Dystrophy ~ An injured soldier complained of searing foot pain but they didn’t even have a foot anymore!
I’ve learned with RSD or CRPS something goes haywire with the sympathetic nervous system after an injury & it just never shuts down the reverberating messages to the area, then you feel shocks, pain & coldness in the extremity!
Mine was pale bluish & cold. Again after the Sympathetic block, immediately my foot & ankle turned pink & warm and no pain! Temp went up 8 degrees immediately.
Good Luck.
There is Life after CRPS after you see ppl who truly know what it is & how to stop it -

I hope I haven't responded here before but I've had CRPS for 45 years. It steals your life. I was 24 when I woke from durgery with a huge, red, burning foot and was diagnosed immediately which is unusual for now very unusual that the dr knew right away back in 1979.

I'm now 69, it started in left foot, then to right foot after a bad fall, hips down after a big spread from covid. Gastro tells me I haven't had IBS for 30 years, its a spread to my colon. They say I have it in my ribcage and larynx after covid as well.

I am trying to accept a wheelchair is next. For some of my life I was in remission I think but it was preinternet and I still didn't know anything except to accept it and walk with crutches my whole life.

I fell and just found out yesterday that I tore the labrum in my hip. Probably will end up with a torn labrum. There are 2 great drs on you tube who specialize in CRPS. Their lectures are videotaped for they aren't short vids but well worth watching so yoy kniw if the treatment they are offering is accepted practice. Injections are NOT accepted practice as they can cause a spread. Spinal cord stimulators are not recommended as the pain is not in your actual body anymore, its a pain pathway issue in your brain.

The one thjng I KNOW anf they are very strong on is Never have surgery without ketamine anesthesia and always have a nerve block when possible so your brain isn't feeling the surgical pain. Even when you are asleep, your brain feels pain and can cause a spread.

Go on youtube and find the two men who are drs doing lectures. Its a time investment bit this is our lives we are talking about. Someone who heard about it are not experts and can make things worse. This disease can get worse if you can believe it.

Ketamine IV is helping when its in the early stages but very very expensive. I yoy have a lot if cash to.invest, check out spero clinic? I don't know if I believe the hype but some say they are better.

Stay away from anyone who says they can cure it with surgery. More scar tissue, more spread and the pain is not in your body! Hope this helps even though I want to say, in direct answer to your question. I have neve found anything to help, but I know a lot about what can make it worse.

Also check out Low Dose Naltexone LDN. If interested in using it INSTEAD of pain meds as it renders them useless, only get it from a dr who knows what they are doing. Any dr who tries to start you at 4.5 mg, doesn't know what they are doing. Do your own due diligence about LDN, only listen to dr experts, the same I was talking aboit above. LDN is a years to rest of life daily commitment and I didn't kniw it was helping till I stopped taking it for surgery. Wow, it was helping.

My best. CRPS is a bear. Wish I had better news. There are other threads here about it. Life can be livable.

Can you share just exactly where the block was done? I've had CRPS of left ankle/foot (which has crept up the leg, making for constant burning nerve pain of the appendage) for about 2 1/2 yrs now... "officially" diagnosed by neurologist to whom I turned after doctors in another practice were clueless and useless. He referred me to PM doctor who wanted to inject into my lumbar spine, telling me that it would well stop the pain in the appendage especially in the traumatized and damaged ankle/foot. I said no thank you, returned to my neurologist who supported my decision. Found a highly recommended PM doctor not too far from us, and he fit no push got yhr spine ijrvyion, trdprvyinh my grit go vsudnih gutyhrt tolrmd in yhs strs z9dlipprf divd, odyrostyhtiyid, nrtbr iddurdz0. Ordered PT for the CRPS, stating that PT (effectively done) is the first line of treatment for CRPS. My super excellent podiatrist agreed. Underwne nearly 20 weeks of PT with a great therapist, and the pain in foot/ankle subsided from a constant 7 to 9 (out of 10) to a constant PL 6 --- so much more tolerable, but the leg up to above the knee is still symptomatic. I stopped PT. $40 weekly co-pays became a factor, and besides, couldn't just keep going for PT to avoid the higher pain levels....continued the stretching and foot exercises at home, but CRPS is NEVER going to just disappear. There definitely is no cure, as stated in medical journals and voiced by my neurologist, podiatrist, and PM doctor. Podiatrist put together a formula (for a pain cream) that was filled at a compounding pharmacy out of state. A bit expensive but SO WORTH IT. A metered pumpful rubbed and massaged around the entire ankle/foot does relieve the bite o the pain. I cannot take pain meds (high sensitive, reactive). Elevating the leg, applying heating pa, and an Aleve as needed all hel. I am quite aware of the burning nerve pain since it is 24/7...it is what it is, and I'm grateful for days when I manage an hour standing so I can do errands, etc., and bake/cook. I've gained a bit of weight since I am not as active/mobile as I was prior to the nasty fall that inflicted the damages to my left leg (torn meniscus and damaged tendons in my knee), my entire left arm and shoulder (but those have "healed" thanks to tons of PT and OT, as well as help from incredible orthopedist).
I'm happy for you that you were able to do the sympathetic block and that it was effective. I have found ways around life with CRPS. Not happy about it, but it beats just being resentful for how it has impacted my life. And yes, I have way too many other more serious medical issues that require my attention. What most affected me was being told by several medical professionals (who DID have knowledge about the condition) that there is no cure, and that indeed it could "creep" into other areas of may body --- and it has. But I have not allowed the condition to get in the way of living as best a life as possible, along with my supportive husband.