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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi there, Boy you sound like me. I have been sick for 23 years. I see your post is older. Has anyone diagnosed you yet? I have been hospitalized poked prodded for years. Had abdominal exploratory surgery, nerve biopsies, muscle biopsies, intestinal biopsies. You name it Ive had it.
I am now exploring the possibility that i have been misdiagnosed with lyme disease and in fact may have Sarcoidosis.
I could not help but notice just about every symptom you had I had seen on researching Sarcoidosis. I am going to a pulmonologist next because since this disease began I have had wheezing in my lungs and have difficulty walking, going up stairs and just about any other exertion. I too have cracking in my joints especially my mid spine, neck and jaw. I started my disease with a thick coating on my tongue which I know now was candida. The only drug the lyme doctor gave me that got me out of a hospital bed was diflucan. I reached a point when that did its job but the numbness in nerves and muscle weakness, the bloating after eating and inability to drink milk persists. I have recently been taking calcium with D3 and have been getting worse. I have read that with sarcoid you can not tolerate vitamin d. Do you have any lung symptoms? I am totally disabled and can barely due things around the house.
Let me know if you have a diagnosis yet. Thanks very much.
I really need some advice/help. I'm in big trouble. I'll try to keep it short. Had chronic fatigue for years, 10+ hours of sleep everyday, tired all day long, difficulty concentrating, memory problems, sugar cravings, joint stiffness, digestive issues, stomach bloating, tired after eating, sensitive to alcohol.
Prior to this was on years of antibiotics (minocycline, tetracycline, amoxycillin) to treat acne. Rounds and rounds of antibiotics given by doctors who didn't know what they were doing.
Naturopath concluded I had a problem with candida. Went on diflucan. Saw improvement in aches and pains, but fatigue and other issues were still there. But, did see improvement. I could not get off the diflucan. If I went off the diflucan the symptoms would come right back. Stayed on diflucan for several months.
Another naturopath said my problems were related to digestion and I should try betaine hcl. This is when the problems went from mild to down right dehibilitating. For the first 10 days on betaine I felt great. Felt like I was 18 again. Energy was up, concentration was good, didn't need as much sleep, cravings were gone.
But then something went terribly wrong. I developed stomach pain and started losing weight. I didn't realize it at the time but I went from 135 to 120lbs. over one month time. I developed all kinds of pain. Nerve pain, stinging pain that would come and go, pain in the stomach, my muscles started twitching all the time, muscle pain, joint stiffness, joint cracking. I was in bed for many months. It has been very scary.
The drs found inflamed abdominal lymph nodes, occasional hypercalcemia, abnormal emgs suggesting nerve irritatation, elevated csf protein suggesting an inflammatory process. I saw neurologists, endocrinologists, rheumatologists, gastroenterologists. I had all the work ups. They don't know what wrong with me.
My current situation is: I have lost most of my body fat, arms, legs, hands, feet, it's like a generalized lipodystrophy. I cannot tolerate vitamin d. 400 IUs of vitamin d cause me to have body pains and blurry vision. Vitamin d causes my egfr numbers to go down slightly, my uric acid to go up, my BUN to go down. That to me sounds like kidney problems. But, I can get vitamin d from the sun and don't get these symptoms.
My joints ache, I have nerve compression problems from fat loss, I have lost much of my fat padding (didn't even know I had this until it was gone), I have what looks like glossitis on my tongue, like papillae atrophy, and vertical grooves on the sides of my tongue.
I've lost fat. I cannot tolerate eating fat, good fats, bad fats, fish oil, cod liver oil, olive oil etc. It makes me sick. Vitamin d is fat soluble, there has to be some connection here. Dr had me try flagyl. The next day my whole body was in pain, could not continue it. I'm losing 6g/fat a day in stool, GI says its fine cause it's in range. My testosterone is low, but endocrine says this is secondary, there's something else going on. I'm developing osteopenia in the spine, the discs in my neck are degenerating. It's a disaster. My muscles continue to twitch and I cannot find a pattern or trigger. They have ruled out ALS and MS by multiple neuros.
Is it an infection, the candida, kidneys, liver? I would appreciate any ideas, the doctors don't know, some say I'm crazy, and most don't really care. I need to try something.
Thanks for listening to my story.
Is Vitamin D intolerance common in CFS?
Boosting an inadequate level of vitamin D would boost the immune system
. I could never tolerate Vit D and when I was sicker, being in the sun too much wore me out terribly.
The same, I am losing fat. Have they found d what's wrong with u?Digging up this old thread. I am suffering from very similar fat loss symptoms as others in this thread. If anyone is still on the forum, can you give us an update on your condition? Have you been diagnosed with anything else, and have any treatments worked?
I'm still working on it. It has been difficult to continue testing due to the pandemic.The same, I am losing fat. Have they found d what's wrong with u?
How do you get PEM when you're bedbound 24/7?This may or may not have anything to do with what you are experiencing, but here's what happened to me.
Back in 2014 and 2015 my Vitamin D levels were in the upper teens. Very low. I had a very poor reaction to vitamin D supplementation, but I don't recall exactly what those reactions were.. and that was during my severe brain fog phase (also, my high sensitivity to sound, light, and practically any other physical or mental stimuli).
So we ended up purchasing a UVB light as an alternate means to increase vitamin D (I am bed bound 24/7, unable to go outside to absorb direct sunlight).
It took three years, but I was gradually able to increase my D level into the low 40s range. And along with several other simple life changes, my energy has gradually increased as well.
I cannot, however, directly attribute my increased energy and decreased PEM specifically to my vitamin D increase, but perhaps it helped.
*I did experience terrible leg cramps after I briefly restarted oral vitamin D3 last year. Someone explained to me that it could be a magnesium deficiency causing this reaction, but I'm not sure they sure how all that works. As I understand it, vitamin D should be taken in conjunction with magnesium, or perhaps not, I'm sure someone else knows how this works. So by all means, please do not follow my suggestion without doing your own research.
H
How do you get PEM when you're bedbound 24/7?
No, nothing..no metabolic changes either. Have you heard of lipodystrophy? I am meeting an expert soon to see if there is a possibility for that. Hope God isn't bcs I am just 32 and I don't want my life to be over that soon.I'm still working on it. It has been difficult to continue testing due to the pandemic.
Have you had any abnormal test results?
Depending upon any number of factors, any particular briefly sustained movement (muscle usage or physical pressure placed upon my muscles) causes some degree of exhaustion 10-20 minutes after the fact. Duration is between minutes and one full day.. severity varies greatly.
Sometimes I can play a virtual piano on my tablet for a few minutes without any lasting side effects. Other times, I have to rest afterwards for up to an hour. Recovery time varies, as well..