What Type of Doctor Diagnoses CRPS/Resource re: Treatment

georgescraftjr, A Neurologist or a Pain Clinic Doctor or Pain Clinic Specialist.

Praying for you. Blessings & Prayers....

@covidstinks2023 Yes, You are right, find a good neurologist who is specialized in CRPS. They have Budapest Rule to confirm whether you have this disorder or not. You may google it for more details.

@georgescraftjr Hey there, I'm so deeply sorry to hear of all your suffering and pain struggles. Wish I could turn the intensity down for you ... good thing about crps is it can fluctuate, so everyday is somewhat different. I have pretty severe and widespread CRPS that developed after a traumatic surgery due to a nasty complication from a previous one, so I can truly empathize with your struggles. For me, it was primarily a pain specialist that I went to who recognized it right away, but also my neurologist - he had a big part in this and has supported/advocated for me fully to this day. CRPS is not talked about enough and often misdiagnosed. I have a bunch of links I can probably send you that I have saved (a lot are specific to certain "defections" per se), one being this one -
https://www.rsds.org
Please keep us posted and we will help you in any way that we can in your journey. You're not alone and you're not crazy - what your body is telling you is very real. It's getting others who have the power to help to see the red flags and take action. Thankfully, my pain Dr has CRPS himself, so it is very personal for him and he is passionate to help people. Best of luck to you!

Hi,
My CRPS was not diagnosed until 14 months after my failed back surgery. 4 Spinal Fusions to cure Siatica. If I had never had surgery, which did nothing to help Sciatica, I would not have CRPS. I saw 15 doctors & PA's over that year and none would listen or acknowledge the CRPS. Finally my surgeon DX over the phone, like you I went on Google to view several different websites and realized I had every symptom including hair loss, sores all over my body, crowns & veneers coming loose, my right foot continues to swell and is always cold. My ankle has some paralysis making driving almost impossible.

I finally found a pain doctor that actually lists the condition on his website. I started PT & Chiropractor immediately 2 X a week for 4 months until UHC cut me off. I have new insurance starting JAN 1st so I hope to get back into the PT & Chiro.

I use a walker always at home because I have fallen several times due to feeling my right leg is shorter than my left so I trip. Last time resulted in a bruised rib on my left side which is very painful. We have removed all our throw rugs and I only wear "barefoot shoes", WateLves sold on Amazon.

Doctor is recommending SCS Spinal Cord Simulator, via Boston Scientific, which I will probably do the trial after the first of the year. I have heard positive things but not to expect 100% relief, 50 to 80%. I do not use pain meds, PT exercises help.

I wish you the best.

Hi,

I am so sorry for what you have had to endure. As you might have read, my husband had two spinal fusions that left him immobile and in chronic pain. For his pain, he is limited in what he can take because a lot of medications worsen his confusion, balance issues and tremors. (He has Alzeheimer's. Lewy Body, Parkinson's and vascular dementia.)

I have never been moved to read the book "Why Bad Things Happen to Good People"--not even after my good friend's son murdered my friend's other son from the same mother, and the surviving son prohited by friend from visiting his family and grandchildren. (It's as if my friend lost his entire family. ...and to make things even more unbearable, my friend's third son from his new wife was killed in an accident while driving the new car my friend gave that son for his 18th birthday.)

Now, that I read about you--and since my husband is suffering so much--I am thinking about reading the book I mentioned.

Good luck with your SCS.

George's wife, Lilly

Good vibes to all.
Has anyone tried
Plasma Rich Protein (PRP) injections for CRPS related pain? What has been your experience?

@tgbcolorado it must be awful. I have battled sciatica and severe back issues for over 20 years. I had a salon in a retirement community for 20 years and that only exacerbated the problem. I went out on disability at 63. Took 4 months on the first try with all the MRI'S and scans they had. I REFUSE to have surgery but right now I have mild neuropathy in the same places on both feet and thighs will get numb if I stand in one spot too long. It's hard to know what's back related and what's chemo related so right now I'm just rolling with the punches. I know I could not survive without my pain meds. I've been on hydrocodone for 20+ years. I can tell when I'm overdue for one, every 6 hours unless it's really bad then it's every 4, because the pain will start. I'll check and see that it's been 8 hours since last pill, no wonder. I am amazed you can go through this with no pain relief meds.

@carol1024

I am so sorry to hear that you have had to live with severe pain for the last 20 years.

I take motrin, once in a while. When my pain gets really bad, I sit on or sleep with a frozen ice pack. Most nights, I sleep by elevating my right leg on a tower of pillows, and I move a heating pad up and down that leg--from my hip to my foot.

When I am driving, I either stick a small, cylinder pillow behind my lower back or under my right thigh. When I go to the grocery store, I either use a cane or lean on a shopping cart; and when my sciatica is really bad, I wear a back brace and I bandage my right thigh. (Sometimes, I stick ice pads under the bandage and walk around with them pressed against my thigh.)

Hope you find something that works. I know that people take neurotin for chemo-related neuropathy.

I used a teaching hospital. In my case it was UNC. Find a neurologist specializing in movement. Crps in your legs-make sure you don't have an issue with your iliac arteries. See a vascular doctor and have that reviewed. As you have discovered most doctor’s do not know about the disease. (I had a doctor in Denver, North carolina, tell me he had all sorts of patients with CRPS. I knew right then in there it was time to move on. He was clueless as to what was going on with this disease.) UTube CRPS. There is a fantastic support group in the New England area. Watch your diet. Sugar causes inflammation. Get it out of your diet. Eat more fish and chicken-red meats cause issues. No alchol beverages. Watch carbs- they turn into sugar and inflation. Think along the line of the Mediterranean diet. Try heat instead of ice. For God sake MOVE. Water aerobics. I found my doctor by calling Mayo in Jacksonville. They guided me in who to contact. I got my Boston Scientific in 2023. I had a terrible rep. Found a new one out of Charlotte and she is fantastic. Have learned to charge my back several times a week for an hour at a time. Remember, Yhe rep can always adjust the stimulation. If your pain management “herds” you in like cattle find a new one. Mine is out of Charlotte and he will take 45 minutes with me. Currently I am getting sympathetic blocks from him along with trigger shots. Gabapentin did not phase me. For this reason, I am not on any medications. I am in my sixth year with this disease and I'm holding my own. I got it before Covid was announced.. I wish you the best of luck. You must be your own advocate.

George’s wife, The symptoms you’re describing sound more like RSD Reflex Sympathetic Dystrophy. Now renamed and lumped into CRPS, but it’s very different. I’d check that out. I had it after my 3rd surgery, that was aborted after 4 hours and a nick of my femoral artery. I coded and died for 4 minutes. They also nicked a sympathetic nerve in the emergent moment. It was a pain management doc that caught it. Luckily it’s in remission.