Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I know I have something autoimmune. I just don't 100% know what it is yet. But it fits a lot of CFS symptoms, and many other things have been ruled out, including multiple sclerosis. I'm really scared it could be CFS. What has been your experience in getting a diagnosis, etc?
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Ever since I stopped doing therapy because of insurance, I've been feeling that old tense and irritable sense of anxiety and stress. I hate that. I was making so many strides and changes during therapy, my therapist would acknowledge all of my progress and accomplishments, and I miss that reassurance. Today I thought about it, and I made those changes! She would always tell me that I chose to...
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I'm horrified! I knew my insurance would go up due to getting a new car but I didn't expect it to go up over $2,000. I did have an accident with the snow/ice in the winter. I was just telling my brother that I have had my car since March 2, 2026 and have only spent $75 on an oil change. Now this! I called another insurance company and their quote was over $4,000. I guess I have to pay...
I have had CFS for 35 years. It really isn't that bad, you just have to be aware of your energy levels and how much you can do each day.
I would see an internal medicine doctor to get your diagnosis. Keep in mind, that it is difficult to diagnose, as there is no one blood test that can determine it. It used to be that they would take a list of symptoms to diagnose it.
Also, check Google for recent news about CFS. Like I said, I was diagnosed 35 years ago. They had Zero treatments back then. And, I have led a perfectly normal life. They probably have treatments now.... you should look it up.
Try not to worry.... whatever it is, you will be able to live with it and you will be fine. I know so many people living completely normal lives, with all kinds of auto-immune conditions.
You're not alone! You'll be okay!
I have had it for about 31 years, so how the diagnosis is reached has changed considerably since then. It is still a process of elimination but there are a couple of specific blood tests in development that should be publicly available within the next 5 years or so.
For the first 5 years of my illness, I struggled. When I learned to recognise my limits and work within them, for the following 12 years led I a basically normal life. Then a particularly prolonged and stressful situation tipped me over the edge and I got worse again.
My biggest recommendation to you is that if you do have CFS, resist the urge (and people's advice) to push through the fatigue. REST! As much as you need to, or can in a given situation. Doing more than your body wants to will only lead to inevitable decline.
That said, good management will give you a good chance to not lose too much of your normal functioning ability. I wish you all the best.
Don't panic :)
It takes time to get through all of the testing necessary to rule things out.
Doctors you should be seeing:
Endocrinologist (not your pcp trying to be one) to rule out Hashimoto's. Most pcps do not do the right testing for this.
Rheumatologist to rule out Lupus, Lyme, RA, etc
Neurologist who does work on autonomic disorders.
and, if you can afford it because they are seldom covered by insurance - a naturopath to do testing for food intolerances. (you can also do this yourself by buying a blood test online)
I wonder if you've had a test to see if you had Covid? if so there are even more resources if this is long-covid related.
When I look back at the early days of having the disease I wish I had taken the time to rest and even stop working for awhile
If you have joint pain you could try to see a rheumatologist. though a good one can be hard to find. Finding the right doctor is key. I was dismissed by so many doctor's in the early days. I get very angry at how I was treated back then.
Ultimately I was diagnosed with CFS, FM, ulcerative colitis and another autoimmune disease. But as others have said it took a long time to find the right doctor, one who did extensive testing