CRPS - anyone suffering with complex regional pain syndrome

Good for you Jeannie! I'm glad to hear things are going well. I like your resilience and problem solving skills. Strategizing to find solutions so you can continue to ride a bike, even on bad days, is key to success. Kudos! My mantra has always been, "where there's a Winney, there's a way." I bet you have mantras too.

Moral of the story... keep moving and don't let our conditions be joy robbers. Know when we need to moderate and modify or have a difficult day plan, otherwise "hurt does NOT equal harm" when dealing with chronic versus acute conditions like chronic regional pain syndrome.

Find your joy today! Good luck with the e-bike and possible pelvic floor PT. I'll look forward to updates. 😊

I am 53 and I had a stroke in the right thalamus back in July. I have been going to PT and OT 3 times per week since August. I have much of my function back, but I suffer from central nerve pain or Dejerine Roussy syndrome. I have a constant tightness in my ribs, my ankle, my upper arm, and my hip and upper leg all on my left side. It feels like I have a rock under my left foot, and my left armpit feels like I have a stick shoved in it. Aquatic therapy gives me some relief, but the pain quickly returns afterwards, and after any exercise at all, it gets even tighter and more painful. I am currently taking Gabapentin 600mg 3x per day, but it is providing very little relief. I've been trying to keep a positive attitude about this, but it is starting to wear me down. Does anybody know of an effective treatment for this syndrome?

Hello @gmacalypso, I know it must be difficult struggling to find some relief from your nerve pain. I did find some information that might be helpful while we wait for members with experience to share what helps them.

-- Therapeutic Approaches for Peripheral and Central Neuropathic Pain: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6906810/
-- Central Pain Syndrome (CPS) - Healthline:
https://www.healthline.com/health/pain-relief-central-pain-syndrome
-- Treatment of Déjerine–Roussy syndrome pain with scrambler therapy:
https://www.futuremedicine.com/doi/10.2217/pmt-2019-0065

Hello @gmacalypso. I was able to locate another discussion on the topic of CRPS, or complex regional pain syndrome so you will notice that I have moved your post here:
- CRPS - anyone suffering with complex regional pain syndrome: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

Members such as @jeanniem and @chuck406 have been recently active in the discussion along with @rwinney and @sueinmn. I am hoping one of them may be able to join you for support.

I have a family member with significant nerve pain issues and recently just added in Tramadol and has been experiencing a slight decrease in pain allowing for more sleep. Have you ever been offered that as an option? Not sure if it would be appropriate but may be worth an ask?

Thank you,l. I have not tried Tramadol. Gabapentin didn't work, so now I'm on pregablin (Lyrica). I take it with flexeril, but so far, I haven't noticed any decrease in pain or other symptoms, yet. I just started this new medication 1 week ago. I will say, cold weather makes all my symptoms worse.

Hello Gail, I wonder if you could help or direct me to someone who can advise treatment for Stump Neuroma. I had two surgeries on the toes of my right foot plus a bunionectomy and an debridement on 2018 for the surgery on 2016. One in 2016 and the other 2018. The nerves were damaged and apparently not properly dealt with during surgery. I have constant pain in the toes since 2016. I have had many injections and physical therapy to no avail. Thank you, Marty

Good morning @gmacalypso. I'm Rachel, it's nice to meet you. I empathize with your pain and symptoms from central nerve pain and like that you've said you are trying to stay positive. That is a huge piece!

It's no wonder you're feeling worn down. Nerve changes that affect your whole body are overwhelming, I share in your journey, although different causes, same outcome. Central Sensitization Syndrome is what shadows my life now. My noticeable changes began at 43, slowly but surely. Small Fiber Neuropathy entered at 47 as well as a plethora of sensory and CNS dysfunctions. Just letting you know that you are not alone. I'm 52, I'm right there with you and understand and experience (or have experienced) the symptoms you describe.

Sometimes switching nerves medications helps. I receive benefit from Pregabalin (Lyrica) which took time to acclimate to regarding side effects and find a dose that was appropriate. 1 week down for you, that's a start, but give it time. Patience of waiting was not always my strong suit. Some folks do receive help from Tramadol or Low Dose Naltrexone. Agreed, the cold is not our friend, is it? I live in upstate NY.

Each person is on their own journey. It can be quite a path of experimenting and learning how to live with change. My advice is to stay as active as possible and remember that your central nervous system may like to play tricks on you, but don't let it win!

How are your emotional changes and needs being met? Living with chronic symptoms affects our emotions and behaviors. How have you been handling such changes? Do you have a good support system in friends or family?

If your body can tolerate side effects well, Buprenorphine is the way to go. My body had enough and I walked away from it. Went to a short acting opioid with strict control of quantity. Same ole song and dance and doesn't matter CRPS 20+ years. Lol.

I wish I had a better solution for what you're going through. It's all hit-and-miss with pharmaceuticals because everyone's body reacts differently. Seeing how you took gabapentin, and are progressing to Lyrica, I'd imagine you may hear about other antidepressants, anticonvulsants, and what ever they are throwing at people on the conservative side these days. My personal choice, I refuse to try it all again.

My suggestion is keep a pain journal in between appointments so you have real time literature to share. Do use Google for your search with ailment/disorder with keyword searches (e.g. antidepressants, anticonvulsants, etc.). Have a say in your treatment. To do so you must educate yourself in the basics, like:

What are anticonvulsants (antidepressants, etc.)? How do they work? What is success for ailment/disorder? Side effects and at what dosage? Tied in with ailment/disorder and pinpoint medical published articles in the past 5 years. Be aware, depending on the doctor, some view this as self-care and are offended. My opinion, find a new doctor. I educate myself so I can hold a conversation on their level, and keep a journal for show-and-tell.

Thank you, Rachel, for your words of empathy and support. I have to say, the news isn't the best, but I got the same prognosis from the neurologist; the trial and error with pharmaceuticals begins. I wonder if anyone has found relief in more "natural" products.
I am very sorry to hear that you suffer this miserable condition! 😢 I've had chronic neck pain for the last ten years, and after awhile, I got used to it. The pain became less dominating over time. I am hoping that this pain will, as well.
My name is Jennifer. Reach out to me, if you'd like to talk more on the subject. I'm still a newbie, but I am someone who can relate to what you're going through, at some level.

Thank you for your kind words, Jennifer, and for the invite to reach out anytime - that is very sweet of you.

Great news that your neck pain became less dominate over time. Hopefully, you receive responses from members who find some relief from natural products. I had no long-term relieg with natural herbs or supplements. I did however learn about healthier, anti-inflammatory food to eat, and what inflamatory food to eliminate or reduce, as well as other lifestyle changes.

As @chuck406 mentions, educate yourself by doing research to learn about your condition and how to naturally help it. We all have to learn by trial and error and get through the steps of self-discovery with medication, treatments, therapies. It's a right of passage in the "cycle of pain".

I'll throw this your way because it helped me a lot. If you are interested in learning more about CNS conditions and chronic pain, here is a video from Mayo Clinic's Dr. Sletten explaining the science behind "chronic".

Mayo Clinic, Dr. Christopher Sletten - Central Sensitization Syndrome:
- https://youtu.be/vJNhdnSK3WQ

If you have questions for me about anything, please do not hesitate to reach out. I'll be curious of your response to the video and whether any of it resonates with you. Stay hopeful, my friend.