Any help on CPS and chronic pain? Given-up on Dr.'s

Posted by hsrikantan @hsrikantan, Sep 30 1:31pm

A; Summary:
1. Diagnosed with Paroxysmal atrial fibrillation (AFIB) in May 2017
2. Incidence of an Ischemic CVA (Stroke) to left Thalamus region on July 19, 2019.
 Continue to have persistent / all day chronic numbness, burning, uncomfortable cold, prickling, tingling, pins-and-needles, stabbing, shooting, lancinating, tight, swollen, and squeezing sensations that are distressing.
 Often this condition makes it hard to bear severe pain and impacts my mobility and quality of life!
 Pain level on a scale of 1 (low) to 10 (high) is @ 7 constantly and goes up to between 8 & 9.
 Have been unable to diagnose, pinpoint the reason, a trigger or cause of the condition, despite consultations with numerous doctors, specialists, medications etc.
3. Performed TEE/Cardioversion on Nov 9th, 2022, for AFIB.
4. Diagnosed with High Grade B Cell Lymphoma during March 2023.
 2 Cycles of RCHOP Chemotherapy: April – May 2023.
 20 sessions of Radiation Oncology sessions (total of 36 GY): June – July 17, 2023
 Chemo induced Neuropathy (CIPN) exacerbating previous Neuropathy due to CVA.
5. PETSCAN on December 26, 2023 - results NO Pathologic Activity within abdomen, pelvis, or the neck soft tissues. Clear & no Lymphoma starting PETSCAN of May 23 and on August 25, 2023.
6. Current Prescription Medications.
• Dabigatran (Generic Pradaxa) 150 mg, twice a day
• Spironolactone 25 mg, twice a day
• Atorvastatin 10 mg, one a day
7. Other treatments tried to date,
for Neuropathy - Doctors, diagnostic tests, medications, and other treatments, etc.
 Over the last 4+ years (since my stroke), have seen several Neurologists (5), Pain Management doctors (6), Spine Neurosurgeon (1) and Chiropractors (2).
 Have also continued to consult with my PCP, Cardiologists (5), Nephrologist (1), Pulmonologist (1), Integrative / functional medicine doctor (1)
 Have also tried several Physical & Occupational therapists, Acupuncture, Yoga, Medical Massage etc.
 Several Diagnostic Tests: X-rays, CT scans, PET Scans, MRIs of Brain, Lumbar & Cervical spines, EMG/Electrodiagnostic studies – Sensory Nerve & Motor Nerve Conduction tests etc.
 Tried Several Medications: Gabapentin, Pregabalin, Naltrexone, BUTRONS (Opioid patch), Duloxetine, CBD oils & creams, medical marijuana etc.
8. Other treatments tried to date,
for Neuropathy - gadgets, creams, lotions, and home treatments, etc.
 Tens 7 Pro therapy electrical impulses to reduce the pain signals going to the spinal cord and brain, which may help relieve pain and relax muscles. Also stimulate the production of endorphins, which are the body's natural painkillers.
 Homedics Therapist Select Prime: High-intensity percussion massager to provide fast and effective self-myofascial release.
 Voltaren Arthritis Pain Gel, a topical nonsteroidal anti-inflammatory (NSAID) gel for my arthritis pain. Blue-Emu Maximum Pain Relief Cream for Arthritis, Muscles & Joints, for my arthritis, muscles, and joints.
 Ancient minerals magnesium lotion, which delivers magnesium, while encouraging healthy skin tissue and protecting the most sensitive of skin.
 Medical marijuana gummies, creams
 CBD Creams.
 Lion’s mane mushroom extract

Shared files

Hossur Srikantan Post Stroke history 01122024 (Hossur-Srikantan-Post-Stroke-history-01122024.pdf)

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Welcome @hsrikantan, Sorry to hear you are struggling to get some answers. I know it's difficult after trying so many different treatments without much relief. @irishnanny3 and @scottrl have mentioned central pain syndrome in another discussion and may have some thoughts to share with you. You also might want to scan through the comments from other members who have posted about central pain syndrome - https://connect.mayoclinic.org/search/comments/?search=central%20pain%20syndrome.

There are also discussions and comments on chemo induced neuropathy that you may want to scan through to see if there might be something that might help - https://connect.mayoclinic.org/search/?search=chemo+neuropathy+what+helps.

I know you have tried quite a few different treatments for the neuropathy symptoms. Have you seen the list of complementary and alternative treatments on the Foundation for Peripheral Neuropathy website? - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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Dear @hsrikantan:
First, I must say that I empathize with you and your struggle! Holy crap! That's a lot of stuff and goodness you typed it all up so succinctly!

I probably won't be very helpful. The only two things you haven't mentioned that I am using are:
1) Cat's Claw, a vine grown in the Amazon. Discovered hundreds of years ago to help arthritis.
2) Stonehenge Health's Dynamic Nerve supplements. Alpha Lipoic Acid Vitamin D3, B2,B6, B12, Folate, Benfotiamine, MSM, Boswellia errata Gum Extract, Micronized PEA, N Acetyl-L_Carnitine HCL

Keep posting as to how you are doing!
Cheers,
Jill

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