Chronic Fatigue: Finding someone who can help me

I'm in a desperate situation, and I've not been able to find anyone to help me.

I've had a slowly worsening chronic fatigue/weakness problem since the day it started 21 years ago.

I've changed my primary care physician at least a ½ dozen times since I first complained about it in 2010, because they don't appear to take me seriously.

The usual response is to tell me to lose weight, exercise, and send me out for the standard blood tests, which always seem to come back negative. I'm given an appointment to return in three months, but the fatigue subject is never addressed again on subsequent visits, unless I bring it up. (A 65lbs weight loss didn't result in any improvement in my condition).

In September of 2003 I came down with an extremely bad "cold"(Respiratory infection). It began to subside after a couple of weeks, and was followed by intense coughing, which also lasted couple of weeks before also subsiding. (But not completely). This was followed by a feeling of an "itchy" Trachea, which lasted a few days.

Then one morning I woke up to go to work and I had to put a lot of effort into walking up the hill from my house, which for the first time ever left me winded. So, it was over the course of a single night that my chronic fatigue/weakness problem began.

After that respiratory infection, jogging for just five minutes, would cause an intense coughing bout that would begin 20 minutes later. I soon noticed that it wasn't just my legs, but all muscles that seemed to lose their strength. This problem has progressively gotten worse over the last 21 years. (Though the cough itself finally almost completely subsided two years ago).

The fatigue began making it difficult to shave, brush my teeth, raise my arms above my head, or do anything requiring strength, stamina, or steadiness. (This weakness seems to have also effected all functions below the waist). I began to get muscle cramps ("Charley-Horses"), as well as DOMS(Delayed Onset Muscle Soreness) very easily if I strained or stretched too hard. And sometimes for no apparent reason at all. Particularly in my upper back, neck, abdomen, calves, quadriceps, hamstrings, feet, neck, and my adductors(or Psoas) where inflammation flare-ups have resulted in ER visits because of extreme difficulties in walking.

I also started experiencing "the burn", which used to only happen when exercising. Now it began happening in my glute/thigh areas during sleep, and I have to continually change position to combat it.

I started to have to fight a tendency for my legs to "kick out" when I walk, and I can barely get up the stairs outside and inside my apartment. And if I lay or sit for even just a few minutes, when I get up my muscles are at their weakess and very unstable. Particularly my lower back, where I have an injury that seems to affect my front hip, causing me to limp when I walk. And resulting in my right leg becoming shorter and even weaker than my left over the last two years.

I'm weakest upon waking up., and standing up on a moving bus is difficult due to very low core strength. And it takes 20 minutes to walk home from the bus stop when I used to do it in 5. Lately, I'm also prone to falling down if I'm not careful. I cannot walk a normal pace for one block or even across the street without having to stop to recover frequently because of my fatigue problem, which now includes an "ache" deep in the center of my chest, where it feels like there is not enough room.

A couple of years ago I was diagnosed with an irregular heartbeat and Ablation surgery was strongly recommended. But I'm apprehensive about that procedure due to my weakened state. My deterioration seems to have accelerated over the last three years, since my bout with COVID-19, which landed me in the hospital/rehab for almost two months.

Over the last year my body fat increased drastically as my muscle tissue atrophied. (I might have Gynecomastia). And for some odd reason a cut in more than half of my calories comsumed daily has not effected a drop in my weight. Even my face has changed appearance.

I now heal from cuts/bruises slowly. I've slept from 10 to as much as 16 hours in a day, but over the last few months my sleep has become so disjointed that I can't really tell how much total sleep I'm getting.

I can no longer breath steadily when walking. Each step will cause "shockwaves" that make my insides shake like Jello. My thirst mechanism doesn't seem to work. Swallowing is more difficult, and I frequently experience a choking-cough that happens when saliva is pulled into my windpipe when I breath in, or my sinuses when I breath out. Breathing is more difficult when I'm lying on my left side as opposed to my right. Basically, breathing sometimes takes effort whem I'm at rest, which didn't used to be the case.

And lastly, several times throughout the day, my heart thumps very heavily for a beat or two for no reason. (I believe that my muscle fatigue problem is affecting my heart and causing the warm fatigue-like ache I experience when I attempt to walk normally).

(I believe that I may have a problem with my endocrine system).

I've been researching my fatigue symptoms which can be attributed to one of many things. (For example: Pompe disease, kidney problems, Polymyositis, Hyperkalemia or Hypothyroidism, Multiple sclerosis, Peripheral neuropathy, CKD, COPD, epidural abscess, Cancer, and Systemic Fungal Infection).

I really would appreciate help in finding someone who can go over my medical records to date in an attempt to determine what to look for and hopefully how to address my problem, because I feel my time is running out. Any assistance would be greatly appreciated.

Statenislander