Chronic Pain members - Welcome, please introduce yourself

Hi, I am a 68 year old woman who has had chronic pain since I was 14. I have constant migraines, fibromyalgia, two vertebrae out of place, neuropathy, DJD, and sciatica, and have had one hip joint replaced and now I have a torn meniscus that needs repaired. I also have diabetes which complicates things. So I was wondering if anyone has had any success with the neuropathy pain management.

Hey Trish, your hobbies sound fun and occupying. Love that for you! Being disabled and limited does make it challenging, but as I've learned from my disability , after no longer being able to work , I really needed to focus on brainstorming and thinking outside of the box. It does get lonely. My mom is disabled and I do a lot of advocating for her. One thing I found through her Medicare insurance is coverage of the organization called Papa Pal. If you have insurance, have you looked into any sort of a visiting group that offers companionship ? How about any volunteer organizations through church or local charities?

Wishing you the best of luck at your specialist appointment.

My name is Brenda and I was diagnosed with Polymyositis 12 years ago, after going to various doctors for 3 years and none of them being able to confirm what I had. I fell one Sunday morning and couldn't get back up. I spent approximately 10 days in the hospital, having numerous test ran on me before a Rheumatology fellow and a Neurology student at USF were able to diagnose me. After which my muscles deteriorated, I fell and fractured both thighs and tailbone and have since suffered with nerve damage which causes my pain 24/7 in every part of my body especially my legs, feet and hands. I am 68 years old and am still employed full time, working from home. I can't afford to retire with so many medical expenses, but my fingers, especially in my left hand go numb constantly because I type my entire shift. I had my left shoulder replaced about 5 years ago and I feel as if it may need to be done again. I am having an EMG tomorrow because of the increase in weakness plus additional pain in that arm. I feel blessed that I am able to still care for myself and support myself.

👋Hi! I’m Jenny and I’m from Colorado. I suffer from chronic pain mostly in my back due to scoliosis and cervical stenosis. I look forward to being in the group and appreciate the nice welcome! 🤗

Finally! Finally someone has put into words what I think every day. Going to my pain specialist has now turned into a 10-15 minute appointment where she asks how I’ve been. I tell her that I’m in worse pain than when I first started seeing her. She types the words into her laptop. She then asks how I’m doing with my meds. I tell her it just doesn’t seem like they are helping very much, she again types. She then tells me she’s filling my prescriptions, I do my urine test, leave the treatment area, and make my appointment for sometime in two months. I just don’t understand how it can take me longer to fill out the registration stuff that we fill out online before the appointment than the actual appointment. I am so frustrated, and in so much pain it’s hard to get up out of chair, it’s hard to walk once I get up. Driving is becoming harder because of the lack of range of motion of my neck. I’ve told her this and she says nothing. I’m so tired of hearing nothing that I feel ridiculous if I say anything at all. It’s like all they want to do is get us in and out as quickly as possible. I guess they feel justified in this because, you know, they ARE filling our prescriptions. I see people so far worse than me and I think you know they deserve a quality of life and there has got to be someone who listens, is compassionate, and tries different approaches to tackle the pain. Heck, we all deserve a quality of life. It’s easy to forget that when you’re being shuffled through! I’m so tired of being part of the stigma associated with pain meds. It’s just not cool anymore. Please help me with any suggestions! Any advice on how to get through to my dr. would be so helpful!

Hi Yvonne, I'm so sorry for your struggles. When I first came to Connect I was in a four-year pain journey as well which changed my life. Since then I am happy to say that I learned many coping skills and use pain management tools that have helped me grow stronger physically and mentally.

As Jim @jimhd mentions, understanding the "cycle of pain" and how it affects us not only physically but behaviorally and emotionally is so important. A big step is being knowledgeable in order to move forward.

Outside of pain medication so much power comes from within yourself it's just not always easy to tap into it when when stressed, depressed and feeling anxious from chronic pain. Have you tried journaling your thoughts and feelings to get all of that out of your head and onto paper?

Getting to learn about your new self, your changed abilities and overall lifestyle change takes time to process and grieve. But, many of us here, like @scottrl, can attest to the fact that life goes on and we get stronger from our obstacles. I've found that problem solving, scheduling, modifying and moderating activity helps, in addition to taking care of mental health needs and self-care, all provide a foundation to living with chronic pain.

So glad you found this group, and I think you wanting to learn and share says a lot about you and your willingness to help yourself. Please allow yourself grace along your journey especially as you get to know life going forward. Keep hope alive and take it one day at a time! What hobbies or interests do you have that make you happy?

Jenny, I could be you writing about your sessions with pain management. My visits are mainly to get my pain pump adjusted or refilled. "Pain management" seems to be a misnomer. As you mentioned, the doc asks how you are (as does mine), then writes or types. In the eight months that I have been visiting my current "Pain management specialist", he has not once mentioned a possible different road to finding out why the pain pump is not providing relief. I finally said to him at our last session, "Don't you have a network of colleagues that you could reach out to and discuss my case. So far you have not been able to really help me". He finally said that he did know someone whom he does reach out to periodically and will speak to him about my baffling case. I go back to him next week. Any bets as to whether he actually spoke about my case to him?
I became more proactice recently, learning that I have to become my own, best advocate. I just had my old spinal cord stimulator removed since it had stopped working three years ago. Any guesses as to who made this decision? Yes, I did. Maybe you need to be a little more firm your pain doc. After all, she supposedly works for you. Ask her to reach out to her colleagues as I did. Worth a try. Right? I wish you all the best.

The following book the university of Wisconsin medical library. Publication date 2007, Sergio Canavero and Vincenzo Bonicalzi. It was the only book about Central Pains at the time of my thalamic stroke (I never had motor symptoms) and the only book I could find at the time that included Central Post-Sroke Pain. I take lyrica, Savella and lamotrigine, and will soon try to drop the Savella. In the last 10 years or so there are also some publications in professional journals. Maybe this will help some who want some sources to read about this set of awful pains. Be blessed with some relief…

My pain management appts are the same.
Pain meds adjusted and refilled.
I’m still in pain on a daily basis with both of my feet hurting so badly that I can hardly walk at times.
Do t know what else to do either.