Chronic Pain members - Welcome, please introduce yourself

Hi Everyone,
I will post under "mmata". I am new to this forum that Mayo Clinic has consented to regarding a variety of topics. I'm so glad that a friend told me about the variety of groups offered.
I have had 8 spine surgeries at different levels of my spine. Unfortunately my spine continues to deteriorate in the Lumbar, the Thoracic and the Cervical levels of my spine. I also am bone on bone in both of my knees. They are both very painful and they buckle on me often causing me to fall or to barely be able to catch myself from falling. I have my second Spinal Cord Stimulator implanted in my spine, but even though it works, I can not tolerate its stimulation any longer as it seems to aggrevate my pain quite a bit. My former pain mgt doctor told me to leave it in my spine as I can't have anesthesia or surgery due to Carbon Dioxide Poisoning bouts where I almost went home to God on 3 separate occasions. That's why I can't have surgery on my knees too. In addition to all of this, I have developed severe Arachnoiditis all around my spine. My pain is so severe that I often pass out from the intensity of my pain. The terrible pain from various things causes me to not sleep much at all. I sleep each night anywhere from Zero to
1 - 1/2 hours of very broken sleep. I have to sleep in my recliner. I can't lay down at all due to my back situation and the resulting crazy pain. I am hoping to connect with others who have severe Arachnoiditis to learn from them what they do for their pain and what treatment they might be receiving. Thank you for letting me join the various groups. My prayers are with you all.
mmata

Hello, my name is Susan, 64, single, with so many things wrong with my body. Born with mild scoliosis, have Raynaud's syndrome, tons of trauma starting before I was 3. I pinched 2 nerves in my neck at 9, was in 3 major car crashes that hospitalized me but no broken bones or scars, just head trauma. At 24, I was diagnosed with PTSD and Major Depression. At 50, I developed Grave's disease (Hyperthyroidism), menopause and Fibromyalgia. The Grave's gave me a minor heart Attack. At 54, I developed anxiety from narcissistic abuse. I have sciatica, bilaterally and 7 thoracic disc bulging from coughing so hard from COVID I caught in 12/20. I have long Covid, developed COPD with chest, sternum, upper back and shoulder pain. I have problems with eating and can't gain weight. Doctors will not try nerve stimulation because I don't have enough muscle or fat and it would stick out. Epidurals help when they inject them in the right place. Just spoke with a doctor about what possible treatments there are for my spinal issues but all he wanted was to talk me in having the Minuteman screw placed in my lower back at one level. I can't find any reviews for the outcome of the procedure. He told me that they can't do anything for me, other than the Minuteman. Has anyone ever gotten an epidural that left you with full body restlessness, painful muscle/tendon pain and a migraine that lasts up to 5 days? Any and ALL suggestions would be accepted with sincere gratitude.

Hi Ken. Thank you for sharing. It must have been horrible to know that you were about to suffer a car crash and not being able to do anything to prevent it. Have your arms healed? How are you doing today? Look forward to hearing more.

I am 84. Pain medications do nothing for me. I was told years ago that I have a high tolerance for pain. Thank goodness I do. I had my back completely rebuilt 1 1/2 yrs ago and still having very sharp stabbing pain. The surgeon told me there was nothing else could be done. I was told 4 months ago I needed hip replacement (Left side) which is side where I have the sharp stabbing pain. I now wonder if this is causing the pain I am having instead of it coming from the back. The hip Dr. says no and now is reluctant to perform the hip surgery due to my age and wants to see me again in 6 months. The hip joint is full of arthritis. This Dr did both of my knee replacements, the last one was about 5 yrs ago. I have complete confidence in this Dr. However, going to see him in 6 months, just means I will be 6 months older. I have excellent health, otherwise. One thing I do have problems with is not being able to stand up straight and walking, due to the extreme pain it causes me which the Dr is concerned about. I did tell him it isn't going to get any better unless I could get rid of the pain. I really like this Dr, but I am going to get a 2nd opinion. I have several friends who have told me of people they know whose similar pain went away after they had hip replacement. I know we are all different.

Hi Carolyn @newlease, welcome. Thankfully your CT scan was normal. Are you still experiencing cheek swelling and headache? When is your evaluation with a physician?

PS: I like your Connect name of "new lease". Does it mean you have a new lease on life?!

@mmata Hello and welcome to the conversation. We're glad you feel comfortable sharing your personal health journey on Connect. A big thanks to the friend that recommended us to you! It's a pretty awesome place with so much shared experience and knowledge.

Here is a discussion on arachnoiditis where you'll find helpful members like @donfeld, @willisann and @dolly to connect with:

Anyone Been Diagnosed With Arachnoiditis After Spine Surgery:

- https://connect.mayoclinic.org/discussion/arachnoiditis-2/

I'm sorry your spinal stimulater is causing more trouble than it's worth. Do you plan on having it removed?

I am so sorry for everything that you are experiencing and hope you find some ways to help you. I can relate with living with chronic pain for over a decade. I can also relate to neighbor harassment and being bullied from them. Even my family bullied me. I just don't understand how bullying can be a game to play on people who are disabled and in constant pain. What is so darn funny about making others feel worse. I'm single and don't have any friends. It would be great if we could talk. Thank you for sharing, it helps me to feel less alone.

The cheek swelling is the same. Headache varies. I have a phone consultation with my doctor on Feb.. 2. I chose the connect name, "newlease" several years ago. Yes, I hope to continue to have a fresh outlook on life.

Hello. I have almost the same thing as you are saying. It’s terrible and painful and I’m miserable. I had both knees done about 15 years ago and that surgery was amazing and really helped. But now I’m 68 years old and my back is so bad but my doctors do not think I would survive a second surgery I had 7 surgeries total including two hip replacements. I am in pain 24/7.

I am so sorry that you're experiencing so much pain. I don't know if you've already tried this or not, but what helps me keep taking 1 day at a time, or even 1 minute at a time, is ending each day-no matter what the day has been like, I end it with going over the positive/good things that happened that day and/or the good people I've interacted with. Then I say a little prayer of thanks. Then in the morning I give thanks for getting through the night and I look outside at Mother Nature and give thanks for what I see. I end with hoping that as my day unfolds that I can somehow be of help to as many people as possible. My goal is to each day to try to live an "attitude of gratitude." It's very helpful to me. Thanks for listening.
mmata