Fibromyalgia pain: Let's connect

Hi @oregongirl I was on hydrocortisone, which is a steroid, I believed and 2 dr's felt that my adrenals were weak, blood cortisol was low so I was on this steroid and it helped a good amount with pain and weakness but I was developing diabetes - my aic went from 5.6 to 6 on a very low carb diet like under 50 carbs a day which is extremely low. So that is one bad thing that can happen - I was on a low dose of hydrocortisone about 20mg a day.

@oregongirl and @doxyjune I was also on hydrocortisone and honestly it was the best I ever felt. I had adrenal fatigue and this was after I had open surgery for MALS, then my dad passed and a lot of stress. It was bad.... My arteries were narrowing again and my vascular surgeon said I need another procedure but would not do it until I was off the hydrocortisone. I was like " why I feel the best I have felt", and he said that's exactly why. it is covering up stuff, plus it has dangerous long term effects. 3 years later, that is still the bes I have felt...just my two cents...doesn't' really mean anything...

Hi @jmmb what did you do for the adrenal fatigue? I have such weakness in my legs. Since this started 20 years ago I seem to just decline.

Hi @doxyjune, well it is complicated. I have chronic fatigue but then had to have this huge surgery, which I had no idea what it entailed. So after 3 days in icu and 4 in reg. hosp bed, drugged the whole time, I was impatient on why I wasn't getting better faster. My surgeon said I was basically cut in half, have the scare across my entire belly to prove it, and juggled around in there. I was told abdominal surgery makes people more fatigued. I was worried that my CFS had come out of remission from this. Then my dad suddenly passed and everything was thrown on me, but I was also devastated and lost without him. My mom had beginning stages of dementia as well. I think my body just couldn't take anymore. I finally went to a naturopathic dr. She did the saliva test and said it was adrenal fatigue. She put me on the hydrocortisone and a bunch of natural supplements. I remember fish oil, but a certain type, 3 times a day, plus so many others. I had to make a chart so I could check off what I took and when. I think there were like 12 things including my regular meds, but 3 times a day or 2 times, etc. I had to wean off the hydro due to what my surgeon said since I needed another procedure. By this time I couldn't afford going to the naturopathic anymore, insurance doesn't cover it. Then my primary sent me to endocrinologist. She had to, I think it was, put me back on the hydrocortisone and then taper me off. She ran all sorts of tests and everything was normal, but I was still exhausted. So I knew it was the Chronic Fatigue syndrome, and stress I am sure. I do have weakness everywhere also. For example I feel in the shower it is such a chore for me to wash my hair. I have thick hair and to shampoo and condition and rinse is a lot of my arms up. This hurts my arms. Pathetic I know....I am going to stop the Savalla and go back to the duloxetine. My dr. said it may be a rash I have. I have found the duloxetine helped me the best with aches and pains. I just wanted to try something new since I am so tired and achy, thinking my body may be immune to it now. I don't know anymore what is what....sorry don't think this helps....

Doxijune. You have taken on more than most could take. Our world is not our mother's world. If they were offering sedatives to depressed people, they would have to give some to every American. Our Country as a whole is depressed. I don't know about you, but as a child I never feared from not locking our door. As a teenager, I could sleep out on the porch on a hot summer night. We have diseases that were never as common as they are now. We are NOT getting healthier. There is money to be made by selling drugs. Not just illegal drugs. Even our children are depressed and into themselves. I get so upset with my daughter who allows her son while he was in school to play on the computer games day and night. He graduated. how I don't know. And that in itself is an issue also. How many graduates cannot read or reason math. ```Nothing is easy to do anymore. Did you ever have to call the insurance company? Or go to DMV? No wonder we are in pain.. Our bodies cannot take this much longer. I believe the lifespan will decrease over the next 20 years. If you are my age, and plan to come back you would not recognize the world. My mother died in 1985. I have been saying for 10 years, she would not recognize anything here. There is only one way to turn. To your Faith. God is faithful and never changes. He is the one constant that we can rely upon. Pray every night. You can ask Him anything you want. He will listen all night to your cries for help. I am fortunate, I have good insurance. I have Medicare and Secondary Insurance that is not cheap. I will pay that if I have to ski food. Medicine is constantly changing Research is going quickly. Today's illness leads to tomorrows drugs. Hang in there Doxijune. This too will pass.

Well I found an apartment I liked. I decided senior living is not for me yet. It is SO expensive. 2200 was the cheapest. I just cannot afford it. If I can stretch my savings and not spend my Social Security without thinking, I might make it. That is not what was planned for my retirement. If my husband was still living, we would have a good living My Insurance is #1 on my bills, then housing and then groceries. I make just over the limit to be able to get any assistance. Boy they sure knew what they were doing when they made up the charts.

Glad you found an apartment you like congrats.I know how you feel about S.s mine is just over the limit by 100.00 When working I started 3different plans for income ,guess what they count your total income ,not fair ,we worked for this money and now penalized for it

Yep..

We oldies but goodies can remember days of not locking doors, walking without fear of harm, etc. The media plays a large role in planting fears and the glamorizing criminals. Man wanted things bigger and faster-it is here y'all.

Well all of you people living in fibro land encouraging you to do your best and what is in your comfort zone. It may mean a fairly lonely existence, but certainly (speaking for myself) better than flares. I do not even ask for pain medication as where I am it is viewed as drug seeking. I stay with the same primary care person as too much changing around or any at all now is viewed as drug seeking. Take an OTC is what they recommend. No need as if it does not help why take it-even as prescribed. In the area I live in prescribing of opioids is rare. Depression and PTSD are in my chart for all to see-it is the first thing in my chart. How far does anyone trying to get help for pain get taken seriously I am told to talk to a therapist. I have a UTI and still trying to see the PCP. Still waiting on a cancellation. So yes, in a fibro flare. There are times when I go to bed and hope not to awaken to another day. As you can see I have and hoping to get some help for the UTI. I don't even mention fibro as bels and whistles go off in the doctor's head that spell out drug-seeker when I have not once asked for them. They are firing patients now for even asking. I do see a pain specialist for trigger point injections which help for a few days. Insurance will only pay for every 6 months even though they only last a week or so. I am allergic to steroids and get shots of a numbing agent that help the muscles relax. So yes, I am rather discouraged right now. 🙁