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...

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New to chrinic fatigue syndrome

sofrustrated
sofrustrated

i was recently diagnosed with CFS, but am questioning this, and thought I would ahare my symtoms and see it they are “normal”.  I know everyones symptoms are unigue, but would love some input.  My symptoms are basically vertigo (bppv thateventually went away after several weeks) and while fetting iver it I did have brain fog, then my blood pressure and pulse elevated and I was having anxiety (never had anxiery before), and then i passed out sitting on the couch (all test at the ER were okay).  I tested positive for 3 of the “requires” areas/antigens (epstein bare, herpes, and pneumonia).  I have mot been sleeping great (I believe because of the elevated pulse and blood pressure), but feel better when I am doing something, and not just sitting around.  My thyroid levels were okay, but I just had a more in debth one test done, in addition to an A1C test for blood sugars.

sofrustrated
sofrustrated
Sorry for all the typos!!
cmiat
cmiat
You don't mention anything about post exertional malaise, which is as far as I know, the one defining characteristic of CFS that everyone suffers from. Are you easily fatigued? Does it take you an unusual length of time to recover from doing things that used to be no problem? Without anything like that, I would indeed very seriously question the diagnosis.
sofrustrated
sofrustrated
I don’t really have that. I usually feel better when doing things, and after too.
Weakfish
Weakfish
Cmait hit the nail on the head. If you do not have significant malaise following exertion that has been a persistent finding for a prolonged period (6 months or more) it’s unlikely that you have CFS. The history and clinical information you provided is too brief to rule out/in other conditions but I would venture to guess you are experiencing adrenaline surges. If this is of recent onset and you are not experiencing a new highly stressful life event your doctor should be ruling out adrenal/pituitary gland related diseases particularly pheochromocytoma.
triunfadora
triunfadora
Yeah, I'm not sure what to think. Some doctors use ME/CFS as catch all diagnosis when they don't really know what's wrong. So, keep pressing into it and make sure there is nothing else behind it. I agree with the other comments in that ME/CFS is characterized by what some of us call the "payback." You do something and you suffer extreme fatigue afterward. Sometimes the payback is a little delayed. I may do something and not suffer for it until 2 days later and I am often left thinking, "What did I do?" Keep looking into it. Many doctors don't take these symptoms very seriously, so I hope you have good doctors who really want to get to the bottom of it. I have a high pulse due to POTS, which is a rapid heartbeat upon standing. It is usually related to intermittent low BP, but your overall BP could be high and it drops when you stand. There is a tilt table test that they can do to determine if you have this. It is common for people with ME/CFS to have POTS as well. Best of luck.
SadieBee
SadieBee
I would look to other autoimmune diseases/disorders. A lot of the symptoms can be overlapping. The positive test results lean towards an autoimmune response to something..... if you don't feel easily fatigued or have a hard time recovering then I would question their diagnoses as well. Drs are horrible at diagnosing or explaining autoimmune responses. I found research on my own and being picky in who I choose as my Dr. (a functional medicine Dr) is where I find the most applicable answers to my health concerns.
To be frank. It is never a direct answer, an easy fix, or a one pill solution. Its hard work and a lot of time. But you already are doing that work by questioning what someone else is telling you in comparison to what your body is telling you. Keep doing that. Your body knows best. Good luck !
MrsOtto
MrsOtto
Just a thought, fibromyalgia maybe if you have more of those symptoms?
skyenotona
skyenotona
I have Vertigo as well. Light headed-ness, balance problems, visions problems. I have fainted before, and felt like I was having a severe panic attack too. I have had CFS since I was 11, and I am 30 now. Going to see a neuro today, checking for MS.