I dont have brain fog?

[Blazer95]

This is big red flag and a part inside of me refuses the CFS diagnose I have gotten, just because of the plain fact that i almost have 0 brainfog.

Ofc i have 0 energy, my body is under big stress while being exhausted at the same time, i have high heart rate, chest pain, nerve pain, muscle pain, every box ticks but not brain fog.

As long as i am resting i am as clear as a mountain water. I just have pain and discomfort while resting.

is it really cfs when i dont have brainfog or do i have most likely something else?
...

 

[linusbert]

i dont know, i usually dont have it, but some episodes of brainfog i have and if i do wrong diet i can get really bad.
but i am not sure if i have cfs as well, also i am not diagnosed cfs, i got diagnosis for unknown metabolic myopathy.
for me i'd say i have something else with cfs like features on top.
(therefore i did not vote because i dont think i am in the cfs group)

 

[Wishful]

You didn't mention PEM. Is that a clear symptom for you? With what delay, and how reliable is the delay?

I can accept PWME without one of the usual symptoms, since we're all different. However, in my entirely non-professional opinion, high heart rate and chest pain with zero energy makes me think you should see a heart specialist, just in case you're just on the verge of a heart attack.

 

[Blazer95]

They checked every aspect of my Heart:
- pro bnp
- Troponin
- Heart mri
- Heart ultrasound

Other stuff aswell: Abdomen Ultrasound Abdomen mri brain mri i have Had everything

All came Back completely Cool

And i have Had a big infection with CRP above 115mg/l so my doc Said after excluding a Lot of diseases ITS only CFS left...


I dont have the PEM but i get Like a Box of Energy every day. If I exceed this Energy supply i have i get exponentially unwell but NOT! more fatigue. I Just get more Body pain, nerve pain, Vision Problems etc.

You could call it some Sort of atypical PEM but defo No typical PEM

 

[L'engle]

If I exceed this Energy supply i have i get exponentially unwell but NOT! more fatigue.

That sounds fairly usual. Exertion can cause various symptoms, and feeling unwell is generally just what people tend to call 'tired' for some reason. I think most of us feel pretty sick from exertion, while the exhaustion is more constant.

 

[lenora]

I wonder if you also have a partner of ME, called Fibromyalgia (FM). The two go hand in hand for many of us. I would definitely check that out, because some help is available.

In my case, the help was never found in the world of vitamins and supplements (although they certainly help if you can find the right one), but in meds. There is nothing really for nerve pain (which eventually becomes muscular), except gabapentin (an old anti-seizure med). I personally take lyrica, but there is another child of gaba. A rheumatologist may be the best doctor to diagnose that. Oh, and the original drug....amitryptiline, and yes....they all take time to adjust to. Welcome to PR. Yours, Lenora

 

[kushami]

@Blazer95 , when you had all these heart tests, did anyone check for orthostatic intolerance, or have you checked that for yourself?

It just struck me that you mentioned feeling somewhat better when resting, which I am guessing would be sitting or lying down.

 

[Blazer95]

I have OI on/Off.

I am actually deep into immune modulatory stuff and diagnostics atm so Symptom based Testing Like OI tests are Not my current field of interest.

I seem to get symptomatic improvements From immunomodulative therapies Like thymosin alpha 1, minocycline, SSRI (Serotonin influences the immune system) yeah so thats my Thing currently

 

[lngnstrng]

cfs as the name says is only a syndrome. cfs is not a very precise description of a medical condition as it is only a syndrome. cfs is diagnosed by ruling out other things first and then by the symptoms you have if they fit cfs but only bc you miss brainfog does not mean you cant have cfs.

"When a syndrome is paired with a definite cause this becomes a disease."

cfs is a collection of symptoms with unknown cause and hence you can be pretty sure that there will never be one single cure for cfs.

 

[Dysfunkion]

I'd say I have more overall exhaustion than brain fog often. I can think but things are very slow often. I recently got an insane burst of energy from magnesium citrate but I don't know if that was the citrate in it that did it for me but no other magnesium did anything quite like it, I couldn't keep taking it because I had immune reaction to it too. Quite the opposite actually, magnesium supplements make me more brain foggy and fatigued. I recently tried citruline malate as I'm now turning my focus on my krebs cycle and the electron transport chain since I believe this is where the biggest issue is for me and vitamin K2 has been the most helpful to me in the past year. I ordered pure citric acid and will try 1/4th teaspoon tomorrow which is according to the label the serving size in food grade and see what happens. It's just starting to get more Summery some days here and I've been getting a lot more sun and I feel a lot better overall when I have that natural summer sun on my skin but strangely in the past year supplemented vitamin D makes me more horribly fatigued and foggy. I actually came across magnesium citrate and decided to give it a try becuse some people report it was the only thing to help them power through it which then lead me down the krebs cycle focus.