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

@arbez I had an GYN suggest testosterone also. I always thought estrogen would help with collagen loss in tendons. My testosterone, being in menopause, was still in normal range but low. I didn't do it because it wasn't covered under insurance and pellets were expensive. Maybe I need to see an endocrinologist about this plus my autoimmune.

@loyd1957 You can get testosterone gel, and just use a pea size. It's around $100 for a year's supply. Might want to check prices on Amazon, Cost Plus Drugs, Good Rx. A certified menopause provider can help you get started if that's what you want to do

For anyone who still has chronic pain while on meds or are not happy with the side effects, you might want to try LDN. It's an off label prescription which means it's not covered by insurance and it requires a compounding pharmacy for fulfillment, but it's relatively cheap. I paid $65 for a 30 day supply at a local pharmacy that is also a compounding pharmacy because it was convenient, but I know I can get a 90 day supply at another compounding pharmacy that is 45 minutes to an hour away. They will even mail it to me if I want. It might not work for everyone or everything, but it's worth discussing with your doctor. I have PMR for which I was prescribed prednisone but a subsequent SMM diagnosis requires a fast taper and I'm using LDN as a bridge to possibly taking kevzara for the PMR. I also have serious arthritis in my cervical spine and knees, with mild to moderate arthritis elsewhere. I'm sleeping better on LDN.

Yes totally understand. I’ve cried all morning probably part because of the steroid’s trying to get relief. I live with multiple conditions plus myelomalasia and something wrong with every single vertebrae in my body. I was able to enjoy life with a dosage of pain meds that kept me going for over 25 years. Then they lumped everyone in this pot that opioids are bad regardless. Now I’m giving less and as everything progresses I’m stuck. I only leave the house for Dr. appointment’s because it isn’t with the added pain going will do. Oh and nighttime the worst.

Christina,
This is Beth and I feel your pain. 5 years ago we moved from CO to UT. I started having symptoms almost right away, knee replacements pain, flare up all day and night, central sensitization. Finally, my counselor recommended a MD EDS and chronic pain doctor. Diagnosed me hEDS. Put me on Low Dose (3.5mg) Naltrexone. It took most of my pain away so I could do PT. I’ve gotten stronger. Walking is my main exercise. I meditate (use the Cove app free, get outside everyday, talk to people that make you laugh. Do a crossword with someone and listen to your favorite music. Do you have a dog? Also, I highly recommend a counselor/therapist. Don’t push yourself too much. Listen to the bendybodies podcast-free. I’ve learned so much about EDS from that. Take good care🙏♥️

Oh my gosh I’ve had 3 or 4 severe dental infections. When I say severe I mean I can’t sleep and it feels like I have a brain tumor that will explode any second! My face was very distorted and swollen. All I did was beg for fwo 800 mg Motrin. The look of horror on the nurses face gave me my answer. A BIG fat Noooooo. To be honest I had taken two before I left for the ER. Narcotics do absolutely zero for dental pain for me. When I realized I wasn’t going to get Motrin I gave in and the nurse added a narcotic to my IV. I was only able to sleep for 3 hours before waking up in pain. They didn’t start me on vancomycin until my throat started to close up from all the swelling. Thirty minutes after getting vancomycin on board the swelling started to go down. The nurse and dr picked up on that pretty quick.

My history started off with an 85 y/o hitting me at 55 mph while I was at a signal stop. I’ve had six cervical thoracic surgeries, three rounds of osteomyelitis with MRSA staph beginning in 7/2017. Since that first bone infection I’ve had 17 PICC lines for infections requiring IV antibiotics. I have scoliosis with a 40% curvature. Since I’ve had an open wound on my leg for the past four years I haven’t been able to get back injections. Pain dr won’t do it due the the risk of a spine infection. I also haven’t been able to get my orencia infusion for RA in four years. So my RA just gets worse. On top of my existing pain both my knees have fractures. My pain dr refuses to increase my medicine because my knees are a fixable problem. Oh forgot to mention if I have a total knee replacement I’m pretty much guaranteed an above the knee amputation. Whenever you get infections the bacteria goes directly to the hard wear. In my case they would immediately amputate at that point. I also haven’t complete ACL and Meniscus tears along with 3 other issues. The surgeon I saw will only offer injections or knee replacement period. He had the audacity to tell me I have two legs. I said nothing but wanted to scream at him. My attitude just keeps getting worse and worse as the depression continues even on antidepressants. I am not suicidal. I’m just very frustrated that there isn’t some scope or procedure the ortho surgeon can do that wouldn’t put me at risk for amputation. They talk about like it’s nothing. It would be life altering and I would have to give my house up. I’ll stop complaining. I hope everyone has the best day they can tomorrow! I’m so happy this group is available to us. I hate the fact that other people are in the same boat as me. To be honest it’s a comfort because I don’t feel like I’m going crazy anymore. Laurie

Christina, I could feel your pain coming through your post. I too have been suffering for 6 years now from severe chronic anal pain and a nerve block that I was administered 3 years ago that was botched giving me nerve damage. I was 3 times worse than before the block. I diagnosed myself and recently I believe I have something different, which of course no doctor/specialist has correctly diagnosed. The so-called experts diagnosed me with Proctalgia Fujax. When I get a diagnosis I have never heard of, I research. I look at reputable sites like Mayo and Cleveland Clinics, NIH, Journals of Medicine. My symptoms did not come close to what the diagnosis said. I tried to explain this to every specialist I saw. They dismissed me. I told them I had Pudendal Neuralgia. I had, and still have, severe anal pain, every single day, 24/7. It’s a rare disorder and a lot of common tests don’t show it and surprisingly neurology medical students aren’t taught about it. So it was put in my medical history for any doctor I was seeing so they naturally all said it’s Proctalgia. I went to a urologist because I had had 3 UTIs in 4 months. Ultrasound showed nothing. When he came to talk to me, I had been so sick, not sleeping or eating for 2 weeks, in a wheelchair, and, with my file in his hand, said “you have Proctalgia”, I politely said “I’m sorry but I disagree with that diagnosis. He threw my file down on his desk and said “I’m done with you.” And he walked out. I was crying and begging him to come back so I could at least explain to him why I believed that. He popped his head in the door and said “I’m done.” He had his nurse wheel me to the front door. He never even addressed the issue of my frequent UTIs. I filed a complaint against him. So I kept researching. I had to sit on cold packs constantly, heating pad and sitz baths. All temporary relief. I went to my gynecologist and without me telling her what I believed I had, she said it. Sounds like Pudendal neuralgia. My PCP agrees with me too. I can’t be prescribed opioids because I am on a benzo. My gynecologist referred me to a pain management specialist. Right away he said I had coccydynia. I had never had tailbone pain this entire time. Then he gave me a ganglion impar block which did nothing. At this point he was guessing I believe. Finally he gives me a pudendal nerve block. I thought finally my pain will end. Instead he made me much worse. Nerve pain, cramping, numbness near my perineum. He told me there’s nothing more I can do for you. I drove home in tears. My life had completely stopped. I couldn’t sit for long and even lying down hurt. There were times I felt like ending my life because I couldn’t take the pain anymore but like you, I have kids. I couldn’t do that to them. They had already lost their dad. I started physical therapy because I have pelvic floor dysfunction but I had to miss more appointments than I had gone to. But a therapist there gave me a physical exam and pressed around the area and found a small knot. That got me to thinking that I may actually have Piriformis Syndrome. That’s when the sciatic nerve gets compressed by the piriformis muscle in the butt cheek. It makes sense. Of course I asked for a pelvic MRI but it showed nothing. I was told by a neurologist that my only hope was to go to Mayo Clinic. I don’t have the money to go and I could never sit on a plane or in a car for the long drive. I’m at a standstill right now. Still working on finding a specialist that knows what they’re doing. So I have absolute empathy for you. I don’t have any answers but you have to take it day by day. There have been many times I said to myself, should I go to the ER so I can get pain meds for at least 24 hours relief. But I struggle through it. But lately it’s been harder and harder to do. I read that the longer I have this diagnosis, the harder it is to find relief. There is no cure. You have to be firm and adamant to your doctors. We know our bodies better than they do. I hope you find relief. It’s a daily battle and it’s frustrating not to be listened to. I don’t know if this reply helps you at all but just know, you are not alone. Take care and definitely hang in there for your spouse and children.

Hello Christina,

I’m saddened that you’ve been dealing with these burdens in your life. Unfortunately many of us have experienced similar challenges and, like yourself, manage to carry on. I won’t share everything now but I want you to know there are many people who care about you and are praying for you. From this day forward I will keep you in my thoughts and prayers. I will return.
In Jesus name I pray. John

Chistina,
Came across your post and in some ways can relate to your dilemma. But you probably are experiencing much more pain than I do. But I too am in pain 24/7. Luckily, I was able to manage to take the edge off of the pain, on and off, for decades with basically 5mg of Norco 4 times a day. I would break 10mg pills in half. I found that less was better.
When I felt like it wasn't enough, I would stop and suffer for a couple days. However, withdrawals can cost you your life, and some people are extremely sensitive. You should never, ever reduce meds without talking with your doctor.
Opioids have such a bad rap. And, if you are abusing them or taking them to get "high," shame on you. To this day, if you mention you are taking opioids, people think you are a drug addict! I looked it up on the internet decades ago and come to find out, the examples they were giving back then was that people that were abusing opioids were housewives, or others, who were taking anywhere from 30 to 50 opioid pills a day. Another thing that truly breaks my heart, is older people who are dying of cancer, and they don't want to take an opioid pill because they don't want to become addicted. Anyway, enough ranting and raving!
One thing I noticed in your post was it sounded like you are letting the pain keep you from being active. Granted I do too much and wind up in bed for a day or two with severe back pain where I can't stand up. But mostly, I manage my activities so that doesn't happen and I have a life. The more activity you have, the better any depression is. Surely, you've heard the saying: Use it or lose it! And aside from overdoing movement and exercise, your whole body will benefit.
Quit Norco last August to go to work. Now injured and haven't been on Norco since January when, in my opinion, a psycho doctor made me out to be a drug addict because the medicines she was pushing wasn't what I was willing to experiment with, especially when I already knew what worked with no side effects.
Since then, I tried to start light exercising several times, even the lightest, gentle exercising caused a great deal of pain. About to try again. And I think that is the key, you have to keep trying. You probably won't be pain free but maybe you can be a little bit better! My best to you in your efforts!

Hi Christina - I immediately said a prayer for you while and when reading your story. I can truthfully say that I can relate to you and most of your pain that you are going through. I had a rod put in my back due to 3 bulging discs. I can NOT bend now to tie shoes etc due to the rod in my back. I have found several helpful apparatus on Amazon to help me with my feet (socks) and shoe struggles. I then had a fusion about 4 years ago. I had a spine stimulator implanted 3 years ago. The stimulator DID NOT HELP EITHER. It seemed to me that my pain got worse after each surgery. I, like you, are in constant pain. I do have the buprenorphine patch 10 mg. It does help to take the EDGE off of my pain. I have many sleepless nights. I was diagnosed with lower back stenosis of the spine. I also was diagnosed with peripheral neuropathy about 3 years ago. My legs are getting very weak. I depend on a cane and a walker now. I use the walker for when I'm getting around in my home. I use my cane for getting around when I go to the doctor or grocery shopping. The pain and burning in my lower back sometimes take me to my knees in pain. I also have SEVERE ARTHRITIS in both hips. X-ray showed that about 2 years ago. So, I do feel your pain agony. It seems to me that my only hope now for pain relief is a PAIN PUMP that my neuro pain doctor is trying to get insurance to approve. If so, the pain pump will be surgically inserted in my right hip (trial period) and at the same time the surgeon will take out the spine stimulator that does NOT WORK. If the PAIN PUMP works for me during the trial period, then surgeon will then make the PAIM PUMP permanent. After 4 years of suffering with the chronic pain, my neuro doctor decided that it was time to try the PAIN PUMP. I'm waiting now to hear from my neuro pain doctor in regard to getting this done. My dear Christine, I will keep you in my prayers. And, maybe, just maybe, someday, we can communicate by email and get to know each other better and discuss our chronic pain problems with each other. I do NOT know how to do this at all.
With hugs, prayers and concern,
Kaye (The Buckeye State)