Chronic Pain members - Welcome, please introduce yourself

Thank you for your thoughtful comments. In answer to your question, I'm working to wean myself off most medication through diet with physical and mental exercise. A key component of this effort is the fifth limb of Ashtanga Yoga known as Pratyahara, which is the mental blocking and control of the senses. I've discussed this with my pain management physician and although I'm making significant progress, the medication is still a positive factor preventing any regression that could occur if I were to suddenly cease its use. My current dosage, which is a significant reduction from my original dosage, will be continally and gradually reduced until it is no longer needed.

I Am 65 yrs old woman who is In a power chair due to A balance disorder and I have a lot of Health problems Both knees are bone on Bone so I can’t have replacement surgery- I can’t walk so My Ortho surgeon puts Cortisone shots 1 in each knee every three months- I also have lower back stenosis and A left shoulder partial Roto cuff tear w a inoperable bone spur I can’t have any surgeries I Have Atril fib and history of strokes And my extensive allergies as well - I am on low dose Opioid that helps where I’m allergic to every Known Opioid but what I take- I find a certain phone game helps me My Dr told me to try it It it’s Mahjong It takes your mind off of pain while you play it. When I stand to get onto my chair I hear my knees Cracking loudly upon standing- My Ortho Dr said it’s osteoarthritis- There really isn’t anything that helps me for long periods each day-I try heat but notice ice makes it hurt worse like cramps 10 min on I can’t do so heating pad 15 min on& off - I can’t even talk about my pains none of my friends want to hear it- At times I feel lonely-My Dr suggested a pain therapist that I go to twice a month to talk about my pains and it helps to talk to a therapist who is a pain therapist try it it helps me

My name is Sharon.I am now 72. My journey in pain started when I was in my early20's. I had been in 6 rear end accidents before I turned 22. Had 2 sons by my 23rd Birthday. I worked as a collection agent, repossession agent, home foreclosure agent, etc. Yes, I did my own repossessions. Yes I've been in some frightening situations. In my hope for help with neck pain I was diagnosed with Rheumatoid Arthritis. My R/A went into remission for 2years before returning with a vengeance. About the same time my R/A returned I was diagnosed with Fibromyalgia. I was already done with pain. Having Fibromyalgia just makes all of this worse. I had 2 knees replaced. Best decision I've made. I now have fractures in my lower back & neck. My eyes got cloudy due to glaucoma, had surgery for that. I finally retired after 38 years in my occupation. The longer I was in my position, the uglier debtors got. I found I was fatigued all day. Sleeping later & just generally unable to keep up with demands of the house have plagued me. My husband is my help. He has been remarkably helpful. I continue to look for help. I am trying to stay open minded. I'm also very interested in what my meds are & why do my Drs seem to think different meds will do for me. I would prefer to be on Humira. But as we age & are forced on Medicare, patients have very little to say about their treatment. Thank you if you made it through this novel. I'm open to questions. Sharon.

Hi @chelle2001, my apologies for the delayed response. Oh, your first trip is pretty soon! That's good, I bet you're counting down the days. Hopefully you can get the gap closed for trip #2. My fingers and toes are crossed for you. Keep trying.

Hmm, who diagnosed me with CSS, great question. I diagnosed myself by process of elimination. When my local doctors stuck to their specialty diagnoses of small fiber neuropathy, migraine, neuralgias, and other things that were for lack of figuring out anything else from x-rays, scans and tests, I went searching on my own. Basically, I knew what I had, diagnosis wise, but my symptoms escalated even those. Treatments and medications had become less effective so that meant it was time to regroup and figure out that CSS was behind it all then come up with a plan on how to find acceptance and learn to live as best I could with chronic conditions.

I applied to the Mayo PRC, and it wasn't until I had interviews with their medical team and was accepted into the pain rehab program that I knew I "qualified" and had CSS. Dr. Sletten looks for 3 key elements to know someone can benefit from the rehabilitation program:

1. Duration and effectiveness of treatments
2. Potential for push/crash
3. Emotional distress

The main thing to understand about CSS is that it's an umbrella over many chronic conditions like, fibromyalgia, neuropathy, chronic fatigue, chronic back pain, migraine, IBS, etc... Unfortunately, these chronic conditions aren't going anywhere and learning how best to live with them becomes the goal.

For me, I had nothing left to do or figure out, so the program taught me how to better my chronic situation by providing a plan. It sounds like you are still in the search process of finding answers and looking for treatments, and I hope you do. It's important to learn as much as you can about your conditions and be your best advocate. Mayo Clinic is certainly the best place to do that. What would you say are your biggest concerns or questions about your conditions, and what are you hoping to achieve from your appointments at Mayo?

I start tomorrow afternoon. Can't wait!

Your journey is similar for mine, except mine has been 85% about headaches. Started at 21, still have pain at 72. Thanks for writing! 🤗

Well, as of last night, I began having sweats, vomiting, chills, migraines, and nausea. I tested for covid and all was well. So I'm here in bed sipping on soup and going from cold to hot in seconds. So i had to cancel my first treatment of equation therapy until next week. I was so excited to go get some relief but now this. 😩

@kimmyb Hello, welcome to Connect, so glad you've joined us. I'm sorry you struggle with so much. You'll find comfort, support and encouragement here, as well as knowing that you are not alone in your pain journey.

Usually, "bone on bone" means knee replacement surgery, but you say you can't have them fixed, why is that?

I agree with your friends about not talking about pain. They are actually doing you a favor by not encouraging talking about symptoms. The best kind of distraction is to free our minds of pain, albeit temporarily. I love that your doctor encouraged playing phone games! Not all docs think outside of the box, yours is a good one. Mahjong, huh? Do you like it?

Feel better.

Hi I am Peggy. I have been struggling with chronic pain in my entire body from various different diagnoses since 2005. I've come close to giving up so many times. But here I am, still plugging along .. hoping. 😏