Chronic Pain members - Welcome, please introduce yourself

@heisenberg34 I had my pain pump removed because I developed arachnoiditis. But when it was implanted the docs were willing to see me weekly to change dosages. It allowed me to up my dose fairly quickly. It is something you might ask about

@laura1970 It's great that you had a doc who was willing to change the dosage so quickly. I will ask my guy, but he seems reluctant to do anything out of the ordinary. What are you doing for pain relief these days if you don't mind me asking? Thanks.

@heisenberg34 I don’t get much pain relief. I developed arachnoiditis as a complication of the pump and had it removed. The thin lining around the spine becomes inflamed. This causes scarring and “clumping “of nerve roots. It is a progressive disease without much treatment. There is one treatment, involving placing calcium channel blockers into the CSF space. It doesn’t cure the disease, just helps with pain and requires another pump be placed. I’m not going to subject my spinal cord to the same instrumentation that caused the arachnoiditis in the first place. No way. The whole ordeal made me skeptical of the has field of pain management and I refuse to see another one.

Thus I am on low dose narcotics that do not help my pain. I’m fortunate, in a sense. I don’t have constant pain. Only when I sit for more that 10-20 minutes, which has led to more isolation as sitting is required for so many activities.

@scampano3 Just like you I went to the gym 5 days a week immediately after I had to retire 10 years ago, I lifted weights and walked on a treadmill for an hour. However, I gradually had to shorten and then stop using the treadmill because of the arthritis and neuropathy in my feet, knees, and hips. I continued lifting weights and walking laps around the gym in between machines for over a hour. Then after that became too hard I went to the gym 3 days a week, until a few months ago when I cancelled my membership. The pain continued to get worse until I couldn't do it anymore. Now I have a hard time just walking around the grocery store with my wife. I still have most of my upper body strength, but from my hips down to my feet I feel at least 20 years older(I'm almost 67).
Chronic pain really sucks.

My name is Bill. I have had serious lower back pain for six months, and various medicines and treatments for it, including two steroid injections in lower back. Nothing has done much good to reduce pain. Recently I was introduced to the Medtronic SCS, an implantable device that masks spinal pain. I will be interested to learn about the experiences of others with this (or similar) device.

@colleenyoung
Is there a meeting where chronic pain support group members can talk with each other?
I would love to help you facilitate a meeting. I am a Mayo PRC graduate and have experience leading executives peer groups.
I need a support group like this and can’t find one.
Can we discuss?
Thanks
Ken

In reading all the suffering I wanted to share what has helped me most.
Its a newer method used by some PTs, called Facial Counter Strain.
https://counterstrain.com/
It’s not just facia work learned at a weekend class. These PTs are highly motivated individuals learning physiology beyond their requirements.
Hope you’ll check it out. I use to not be able to sit in a car or at our home table for years. I believe the things the originator is figuring out of the body surpasses any of the other many pain modulators I’ve tried.

There’s also a podcast…. Just type in COUNTERSTRAIN to find.
I believe you won’t be disappointed.
I’m not a PT or do I work for COUNTERSTRAIN, I’m just an amazed person.

I have been suffering from mid back pain ( under the left scapula) for decades, but every year it got worse, became more frequent, , until now I am in agonizing pain every day. I have undergone numerous/ different treatments at Johns Hopkins Pain Management Clinic, to no avail. The thought is that muscle spasm touches nerves and causes this excruciating pain, but not certain. I am desperate.

Hello Kelsey, I am DoctorP (not medical), and at 79 yrs. suffer a variety of painful conditions including coccyx and rectal pain presumed to result from progressive nerve delamination. I am considering the Superior Hypogastric Plexus Block procedure and would like to chat with anyone who has had similar experience.

I'm sorry you are in so much pain. I'm a retired orthopedic RN and l have the similar problems . I reciently moved from CA to FL . In Calif I had great doctors and my pain was well managed. Then I moved to the Florida the " Meca of Drug Abuse " no one here will prescribe anything stronger than Tramadol for chronic pain. Its better than nothing but its not enough. Doctors in Florida will still give their patients all of the Oxy drugs they want ( which is what started the drug abuse problems ) but I'm allergic to all of them. So Fentynal patches is what I was given in the past ( which they refuse to give me).

Unfortunately all you can do is keep seeing pain doctors until you find one who will help you. Call your Ins co and let them know that you needing second opinions ( or maybe a third or fouth ). That way they will know that you aren't " shopping for drugs and will authorize and pay for second options. ONLY tell your Ins co and future doctors that "you just don't click " with your current doctor. Never complain to a new doctor about your last one. That's a red flag.

The other thing that might work is to " educate your doctors" about your condition. Be VERY careful about your approch. Physicians have Big Egos and do not like being told how to treat you.
I have h-EDS Ehlers-Danlos Syndrome which means I am in chronic pain and autoimmune. I've collected medical articles about my condition and bring copies with me. I even highlight the important information I want them to focus on. Think of it as giving them accurate "evidence/ proof" in a murder trial.

I wait until I have my first appt to see if I even like them or if they might be able to help me. Then I hand the doctor my info packet at the end of your appt.
All you need to say is that you don't expect your doctors to know everything about your condition ( or what treatments worked in the past...) so you thought this might help him/ her understand you better. THATS IT. The less you day the better. Then thank them for their time and leave. Don't get frustrated if they dont give you what you wanted at that first appt. Give them a chance to read what you gave them... In addition to the clinical info, I always include what previous treatments and meditations worked and which ones didnt. I also request that if he/she can't ( or won't) help me to please be honest and tell me so I can find another doctor. There is nothing wrong with saying that. You are giving them permission to say " I'm not the right doctor for you " and you won't waste your time or theirs.
I hope this helps you.
💜🩷💛