Not cfs??

[Idontknoooow]

Hi! So i recently went to a neurologist. She said I couldn't have CFS because I've had problems with fatigue since I was little and it comes after a virus or something

I'm kind of unsure what to think now, we are going to do a sleeping study on me but I personally don't think I have problems with my sleep that would be causing this. We did rule out Apnea though.

She also said to me if nothing showed up in the tests it would mean that I'm just too sensitive mentally. I don't know how that would work since I get exhausted when I do something and not when something mentally happens unless I have an anxiety attack etc.

I would appreciate advice !

[Ezzie33]

Your neurologist is wrong (I'm restraining myself from what I really want to say about her, but let's just say it is less than polite).

Do you have Post-Exertional Malaise (PEM)?

It's good they're running tests to rule out illnesses - ME/CFS is basically a diagnosis of exclusion. It also doesn't have to be post-viral (mine was caused by stress). Incidentally I also felt tired for years (even as a teenager) but could always fuction fully & push through...until I couldn't & ended up pretty much housebound.

Check out the ME Association for more info on the illness - they have a lot of helpful leaflets. Also if you are on reddit, the r/cfs subreddit is great. On the wiki there is a list of suggested tests to rule out other illnesses. Also lots of info on pacing - this is a great tool for any chronic illness where fatigue is a major symptom & won't harm you.

Lastly, make sure to get a copy of all your test results. You might be "in range" but right at the edge of the range, and may be that is not optimal for your body.

[Idontknoooow in reply to Ezzie33]

Thank you so much for answering, this reassured me! I will keep fighting till I get someone who will listen Best of luck to you!

[timbuktoo123]

Just a suggestion but make sure you rule out b12 deficiency as that has a lot of the same symptoms as CFS.

[Idontknoooow in reply to timbuktoo123]

I think we checked it out, they did some blood work since I was so tired If I remember correctly it was okay

[timbuktoo123 in reply to Idontknoooow]

The doctors don't always know about b12. They can say your level is good and you're only just above the bottom of the range. My b12 level has been in range but I still have Pernicious Anaemia which means I can't absorb b12. The b12 test measures active and inactive b12 so it doesn't show the true picture. There's a really good Facebook group called Pernicious Anaemia/B12 deficiency - Support Group. They're very knowledgeable and helpful. 😀