Hyperpigmentation/ do I have ME?

[CaitOS]

Hey, so I used to firmly believe that I had Me/CFS, but not so sure anymore. Once the pandemic is over here, I'm going to go do the rounds of medical tests again but I want to give myself a realistic grounding in whether or not I could have ME/CFS, just to help myself emotionally.

What do you think the likelihood is someone with ME having diffuse hyperpigmentation on their face, with a black spot on gums that developed years ago (and yes, salt cravings, thirst, will be looking at Addisons), not having a clear PEM pattern, not being alcohol intolerant (was in the first few months years ago), not having tender lymph nodes (enlarged but not tender, and enlarged years before I got sick) and not having fatigue as main issue but much more of an issue with muscle weakness, vision problems. Lots of muscle fascilitations and spasms, stomach problems, all of that jazz as well.

Any opinions would be great!

 

[nerd]

Difficult to tell because there isn't even a clear definition of CFS/ME. If untreated, I think PEM is the most significant symptomatic marker. But overall, it's the number of symptoms and biomarkers that aggregately suggest CFS/ME. There always are random factors that can be attributed to a co-morbidity. If you're having more muscle weakness, vision problems, spasms, stomach problems, this could as well be a primary neuromuscular disease or a type of (pre-)diabetes.

 

[Booble]

Possibly neurological auto immune related?
Have you been tested for MS? I don't want to scare you as it's very unlikely.

 

[CaitOS]

Possibly neurological auto immune related?
Have you been tested for MS? I don't want to scare you as it's very unlikely.

A few years ago I had a MRI but it came up clear. But it's definitely on the list to be tested for again, as whatever I have is progressive. MS is less scary to me than progressive ME so don't worry about that! I do feel like it's more likely something like that rather than ME, so useful to hear others think so too.

 

[CaitOS]

Difficult to tell because there isn't even a clear definition of CFS/ME. If untreated, I think PEM is the most significant symptomatic marker. But overall, it's the number of symptoms and biomarkers that aggregately suggest CFS/ME. There always are random factors that can be attributed to a co-morbidity. If you're having more muscle weakness, vision problems, spasms, stomach problems, this could as well be a primary neuromuscular disease or a type of (pre-)diabetes.

Agree on the lack of clear definition. I've looked at some of the most accepted, like Fukada, and also groups like Stanford medical for some of the exclusion criteria, like without PEM or tender lymph nodes, consider something else. So I can still fit under ME/CFS if I have co-morbidities and if I'm also an atypical case. At the moment, that feels like a stretch. But I also know I could just be looking for it to be something else then ME so thanks for your reply, very helpful!

 

[Booble]

A few years ago I had a MRI but it came up clear. But it's definitely on the list to be tested for again, as whatever I have is progressive. MS is less scary to me than progressive ME so don't worry about that! I do feel like it's more likely something like that rather than ME, so useful to hear others think so too.

My grandmother had MS and she lived til 103.
She was in a wheelchair at one point but was determined to walk again. She had experimental treatment in the 1940s where they attached electrodes to her legs. At the place where she got her treatment she noticed there was phone booth across the street. One day after treatment she was able to walk. She walked over to that phone booth and called my grandfather and told him she had walked. They cried together. She went on to be able to walk an played golf and drove a car well into her 90s.

 

[sue1234]

Definitely have a doctor test your ACTH, which when elevated, causes hyperpigmentation. Of course, add a cortisol with that, all around 8 a.m.

 

[Martial]

It sounds like whatever you have going on is primarily centered around your nervous system. I would just make sure to rule out infectious diseses before going down the auto immune route. As those medications if you take immunosuppresents will make chronic infections worse. Whatever is going on I'm hoping you find quick answers and a good solution!