CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

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gmaj85 | @gmaj85 | Jan 13 9:12am

Hi pfox - I have CRPS which was diagnosed 8 years and about 7 doctors after I started trying to get answers to my pain. Short story - I was constantly doing research and found out about the spinal cord stimulator. I was going to a pain clinic to get refills for Tramadol seeing a nurse practitioner and when I brought that up he made an appointment with the surgeon who then gave me information to read.
I have had it in since 10/23 and the improvement is amazing. It did take several adjustments from the nurse for Medtronic who makes it, but she’s local and has always helped. The last adjustment, about 4 months ago was the best. I haven’t made any since and I’ve resumed my line dancing and gym regularity.
I’m 86 and it’s not the best thing to happen but the scs has helped a lot. Good luck!

ekennedy95 | @ekennedy95 | 1 day ago

I’m 30 and looking for people with severe/widespread CRPS or recommendations for multidisciplinary CRPS rehabilitation programs.

My history is complicated. I’ve had 7+ lumbar spine surgeries since 2022, including multiple decompressions/revisions and ultimately an L4–S1 fusion. After my 2024 fusion/extension, I developed CRPS beginning in my left foot/leg. I later required another L5–S1 revision/decompression for severe foraminal stenosis/bony overgrowth and have documented bilateral L5/S1 radiculopathy.

I also had a spinal cord stimulator trial that worked very well, but unfortunately the permanent implant/revision has provided little benefit and is mostly off.

My CRPS is now formally diagnosed in both legs, but I’m also experiencing severe symptoms in both hands/fingers and my abdomen. My rehab doctors consider my presentation unusually widespread and have used the term “central” CRPS, although I know that’s not a universally recognized subtype.

My main symptoms are constant 8–9/10 pain, severe allodynia, swelling, red/purple/pale color and temperature changes in my hands/feet, tremors, weakness, sensory loss, poor balance, severe fatigue and very limited walking tolerance. I use a rolling walker. Recent neuro-rehab testing showed a Berg Balance score of 28/56 (high fall risk), TUG ~52 seconds and gait speed of 0.3 m/s.

I’ve had vascular testing, autoimmune bloodwork and orthopedic evaluation without another explanation being found.

I’ve tried/currently use various combinations of Lyrica, gabapentin, amitriptyline, tizanidine, duloxetine, LDN, diclofenac, intranasal ketamine and SCS. The medication burden and poor sleep have become problems themselves.

I’m currently at a neurological rehab center doing specialized PT twice weekly, with OT planned for my hands. They’re considering whether I would benefit from a 2–3 week multidisciplinary inpatient rehabilitation stay, because twice-weekly therapy may not be enough.

I’m mainly looking to hear from anyone who:

* Has CRPS involving multiple limbs/hands + feet or similarly widespread autonomic symptoms
* Has done an inpatient/intensive CRPS rehabilitation program and can recommend one
* Found medications or treatments particularly helpful for widespread CRPS
* Had an SCS trial succeed but the permanent implant fail
* Started out this functionally impaired and was able to regain meaningful walking/function

I’m not looking for diagnosis—just hoping to find people with genuinely similar experiences and programs/doctors that might be able to help.

pinksue54 | @pinksue54 | 6 hours ago

So sorry to hear you are experiencing this. Having it the abdomen is rare it’s usually the limbs. I’ve had it in the R leg from a meniscus surgery. I had a series of blocks while going up every week on gabapentin. Are you at the max dose Gabapentin?
For another reason, I am going to a neurologist in Feb to talk about SCS since he is versed in many.
You are on so many meds.did you ever speak to a pharmacist about best way or time of day to take them since there are so many pathways in the liver for elimination that maybe some meds cause others to be eliminated too quickly so not as effective. I am sure you’ve been schooled on basic sleep hygiene.
I hope you find some answers soon.
SV