How do I live, when I have chronic pain in every part of my body ?

I am also living a life in chronic pain. I’ve had fibro for over 40 years now, I have bad degenerative disc disease. I have some trapped nerves in cervical, thoracic and lumbar spine. I have RFA in all three parts of my spine. There is an area in my lumbar spine, which cannot be treated with RFA. The only thing that would give me relief I am told is a steroid injection. But I can no longer have steroids because I developed cortisol insufficiency from all the steroids that I have gotten. I am now having to take hydrocortisone supplements because my adrenal glands produce so little cortisol. In addition, I suffer from immuno deficiency. I give myself antibody infusions weekly. My antibody dose needed to be doubled because I was staying sick after several courses of antibiotics. I basically feel like I live in a bubble so as not to get sick. The depression is very hard to take. I feel like I may have one day or two per month in which I have any energy and my body pain is low. I do not take opioids. I tried buprenorphine and it made me vomit as soon as I took it. All that is left to me is Flexeril and clonazepam. I had a stroke last year from which I recovered, but not all the way. My gait is impaired and my fine motor skills are very poor because of the DDD in my neck. I’m 72. I am not suicidal, but I feel like when the universe is ready to take me back I’m ready to go.

Keep going, Christina. Your children are young and still need you. New treatments may develop in the coming years from which you can benefit. It’s a mystery why some of us are overwhelmed with these physical challenges but there must be a reason that hopefully will be revealed to us in the afterlife.

Hello Christina, I want to say this in a way that I hope is helpful. Like the others, my pain isn't exactly like yours but I was to focus on quality of life. Brief summery : I was 57 when a 16' box trailer pinned me between it and a crate. It spun me, crushing my clavicle breaking some ribs and a hairline crack down my sternum. If someone hadn't walked by and saw what was going on and stopped the truck, I wouldn't be writing this.
I had been working since I was 15 years old. Never went to high-school. I read a lot of books and developed skills that let me lead a decent life. I also played guitar 40+ years in various bands. That is who I was. That was all I knew. I was married but no other family to speak of.
I didn't know it at the time but what happened at that moment changed my life forever. I had surgery, healed after 6 months , I went back to work, trade show and Convention industry. Great job, loved. Put a 8-10' beam on my shoulder and climb a 16' ladder, hand one end to the guy on the other ladder and bolt it in. Move on to the next one. Plus, I could read prints etc. I was in demand.
Then, my neck start killing every time I looked up. Got a cage in my neck. 6 months of healing and back to work. Neck was OK but not good. Started not being able to stand and walk for even 8 hours. Foot Dr said it wasn't my feet, it was my spine. Back Dr said my discs were collapsed, recommend surgery. Did that, 6month heal and back to work. Didn't help my feet but it helped my back. Started more tests with " specialists ". They said neuropathy in legs and feet. I can't tell you how many thousands of dollars I have spent on skin sample, blood test, mri's, x-rays, cats cans, and pills, not to mention , I wasn't in demand so much, anymore.
I was still working but not as much. Then Covid hit. Everyone in the industry was laid off. I was getting unemployment checks but in Florida, that isn't much. But I did some things around the house. About a month into that time off, I got up in the middle of the night to get some water. I got out of bed, took a step and fell on my face. Couldn't move from my waist down. Had to call an ambulance. They took me to a hospital that told my wife and I that they didn't treat back pain, even after I said I was concerned about the cage in my lower back( I have one in my neck and one in my lower spine). They gave me some pills(opiods) and said to see my surgeon. So I ate the pills, felt better, went to my surgeon. Took an xray, said it looked fine. A steroid shot and more pills and I go home. Things get a bit fuzzy here.
I take pills and I lay around and then I don't remember too much. I believe I was delirious. My wife said I was laying and moaning and cussing. I don't remember any of if.
(I think this too long)
To wrap it all up , I got a CT scan. I had a bad back infection. All the screws came out of my lower cage. Emergency surgery that same day.
Even after all that, I started to heal. Then came the game changer. Sepsis. That is a bad dude. It multiplied everything that is wrong with me. Dr's are finally starting to study it as a profession. Even as recently 7-8 years ago, when this happened to me, wait, 5-6 years ago, nobody would talk much about it. I was still in bad shape. Hurting, literally from my bottom of my feet to the top of my head. Then I found an article on Post-Sepsis-Syndrome. That sounded exactly like what I was going through and am still going through, along with everything those surgeries were supposed to help.
So, finally, I come to now. I hate to say it but my life sucks. I take a lot of nerve pain meds. But I do ask for and get 30 opioid pills a month for days when I hurt so bad that I can't even listen to what someone is saying. Maybe someday I will need more. Don't get me wrong. I never feel good. I can't sleep for more than 4-5 hours, tops.
My Quality of life) 1=none 10= very good
I would say 2-3. I don't even know who I am, anymore. All my "Friends" are gone. Even my wife is getting tired of me. I have no future worth planning. All my dreams are unattainable. So , people, and you, might not like this message but there it is.
However, sometimes those opioid make the difference between misery and tolerable. I am not suicidal either, but it is curious that we will understand an animals pain and do what is necessary but the same subject it taboo to discuss when humans are involved. Sorry I wasn't more uplifting. We only have so many options and so many years left. I don't feel like I can make decisions about my life based off the rules that were made by and for people who will never experience my situation. I do what is best for me to get through the day. I wish you wisdom, strength, and resolve. Todd

So very sorry you're experiencing this. After having my pain from lipomas dismissed by a doctor, who quickly recommended cognitive behavioral therapy or talk therapy for my debilitating pain, I got help from an occupational therapist at our local clinic. She did neuro-stimulation, massage, and cupping, and recommended that I get a Eco-Brush and brush the painful areas every day. This is help the lymphatic system to work properly. That might not be your problem, but I was so impressed by the problem solving and innovation by this master's degree practitioner, it's given me a whole new lease on life. If you haven't tried PT, OT, and/or massage, you might give it a try. Good luck to you.

Very helpful information for many of us thank you! Does your therapist happen to be in Tucson, Az 😅
Thank you for sharing your experience! Glad it helps you!

@healthme Not sure to whom your question is addressed, but I live in far northern Minnesota near International Falls. The PT and OT I go to are at a small, critical access hospital and clinic that wouldn't exist if the federal government didn't give them special funding to serve underserved rural areas. A lot of these health care providers are at risk these days. I hope ours doesn't close. For some of us, it would be two hours to another provider.

I had a desk job all my life. I have arthritis everywhere, fibromyalgia and had 2 failed back surgeries which gave me neuropathy and eventually small fiber neuropathy. I am in severe pain from the time I wake up till I go to bed. All the doctors do is prescribe pills with no solutions. Sometimes I wonder how I will survive but I do. I take gabapentin, tizanidine, Tylenol arthritis and meloxicam with little relief. Doctors don't want to try and figure anything out. So I suffer.

To all women mid-thirties or older having "pain everywhere", fibromyalgia, or similar please research Musculoskeletal Syndrome of Menopause (MSM). Your hormones (lack of, or fluctuating) could be why you hurt. You should consider seeing a certified menopause practitioner (yes, even if you're still having periods).

@penny21 did you read her story? Her life has been excruciating pain and you tell her it's gonna take enough. She should try acupuncture and it is gonna take at least two treatments with the excruciating pain. She's in now. I don't think acupuncture is gonna help her. I think positive thoughts and encouragement is gonna help her more than telling her to get another treatment. I have advanced MS and I'm in pain all the time. I've almost got it in under control. I'm 62 years old and I'm in stage MS wheelchair-bound and I'm not even gonna ask her to try the meds I am on because she's probably already tried them, but God bless everybody on here because it's a terrible journey we're all on.

@suecutuli hi Sue, I have advanced MS fibromyalgia and a whole bunch of other stuff and I do have corn, chronic pain and very bad depression so I hear you too and yes, all we can do is be there for each other and hear each other just so you know a little hair that my brother gave me that'll help even though you're on opiates there's something that is called jewel action. It's a Tylenol ibuprofen mix that you can get on Amazon and it acts like it's got it it's both of those together and if you take three of those, it's like taking 750 mg of a painkiller it helps boost my pain meds and I'm ona very high dosage of pain and it does help some just an FYI and again you can get that on Amazon I hope that might help you and other people that have chronic pain that we do. God bless you, hon.

Christina,
I know exactly what you are going through. I have been to hell and back with pain through my entire body. But, at age 50 they did genetic testing and found I have hereditary nerve pressure palsy which causes extreme pain and very sensitive skin touch. That’s because the nerves are in a palsy. It feels like you have a black and blue on your skin. Certain medications also flare that up.
There is also another rare neurological disease called CMT - Charcot Marie tooth that causes the same issues. The only test is genetic and when doctors can’t figure it out it’s always fibromyalgia!
What works for me is massage, Motrin and I know this sounds crazy but when the pain is off the chart I take Amoxicillin and within Two hours the pain subsides. Doctors can’t figure out why, but I think the Epstein Barr virus reactivates and the antibiotic calms it down. That’s because I had mono when I was 20.

Also found that the hormone CCK which is given during a Hida scan for the gallbladder stopped ALL the pain for 5 weeks!!! Doctors just don’t listen, but there was a clinical trail CLL and Chronic Pain, but was never completed.

CCK does not come in pill form. But it was like a miracle when I got it! After 5 weeks I was back to all the symptoms of chronic pain. So the only relief is seeing a pain management doctor for trigger point injections which help.

Now what made mine worse is that I was diagnosed with CLL and unfortunately can’t take any chemo because of the toxic reaction the HNPP causes. It’s a no win situation.

But trust me foot massages and full body massage helps.

Maybe one day one of my doctors will take me serious about the CCK and would research it and hopefully more people would be helped.

Please don’t give up and keep trying. One thing you do might help and it might make you feel almost normal.

The biggest problem is no one can relate to the sever pain we experience and just push it aside stating there is nothing we can do. That’s because they don’t do their research and honestly they really don’t care!

Good luck. Don’t give up and you do your research. There is a program you can google to pull in all your symptoms and it comes up with what it could be. From there research each answer. Bring to your doctor and discuss it with them.

Never give up!!! Be your own advocate!