Anyone with CFS/ME? Does this sound similar to you?

[Wobblyheart]

Hi everyone, I have been feeling an unprecedented fatigue since the birth of my baby (now a busy energetic 16 month old!). There was a lot going on and I had too many confusing symptoms, many of which we were able to either resolve or attribute to a clear cause. But I still have a few symptoms that just feel so debilitating yet a year into numerous scans and checks and we cannot find a cause. At this point I am worried it is some form of cancer we are missing whereas my GP thinks alongside CFS lines. I am waiting for a rheumo appt, I think it is going to be a few months before I am seen so I wondered if anyone with CFS recognises this and whether it sounds like CFS or is it time I need to get myself a whole body CAT scan or something...

Symptoms (all since November 2022 so around 15 months now):

• exhaustion that i never felt before, doesnt get better with sleep or rest
• muscle fatigue and muscle fatigability (muscle tire from simple things like walking up stairs or stirring pancake batter)
• body feeling weak and extremely heavy (this is the main one!) - I feel like my body is made of led and extra gravity is pulling me down or like i have a weighted blanked on all of my body all the time
• Even when I am sitting down i feel this pressure pulling me down
• 50 minute walk will leave me completely exhausted and I need like an hour at least to get to more or less functioning level

What it is not:

• not vitamin difficiencies (vit d and calcium on a lower end but not too down)
• thyroid is normal
• all autoimmune bloods normal
• all comprehensive bloods normal
• cortisol & hormons normal
• creatine kinase normal
• liver, kidney function normal
• heart normal
• lungs normal
• brain, spine mri normal
• abdominal ultrasound normal
• extensive neuro exams all normal meaning its not MND, MSA, not miasthenia gravis, gillian barre etc none of that
• not diabetes

What it could be:

• combination of poor sleep, anxiety and minor vitamin stuff but I am less anxious than i was and I never had this type of feeling when i had bad anxiety in the past
• not absorbing nutrients properly due to stomach inflammation, idk if it can me feel this yucky though
• CFS - but apart from a day here and a day there is no change in how I feel. However I lead a very busy life currently with a toddler, large household to keep up and full-time work so I dont get the same level of rest that I was used to pre-child

If you made it to here, thank you, lovely crowd of wonderful people!

Thank you, it sounds like yours might be linked to the vitamin B12 or thyroid? There was a good suggestion about about vitmain b12, you might want to look into that.

I am not sleepy per se, just extremely fatigued.

Well, maybe it is cancer after all on the cards. Just have been to the gynae ultrasound and they were criptic about what they saw there (my experience is that it isnt a good thing) saying that they didnt see pathology (or maybe I have misheard) but the results were going to go to my doctor for them to look at them and decide for themselves. I was asked lots of questions that I didnt expect, when was my last smear, whether i had pain during intercourse and if i had a Cesarean birth (which I didnt).

I am 37

Hi no all my levels are all ‘normal’ apparently I have muscle weakness and cannot physically move some days I am bedbound I hope you manage to get some answers

I am not a coeliac but am wheat intolerant so intolerant to a different protein in wheat as I'm fine with gluten.
I had ME for 4 years, I am pretty certain that the wheat intolerance developed as a result of my shitty immune system overreacting to everything.
I know treat people with me and find about 50% of them are intolerant of wheat. It is well worth entirely cutting out every single molecule for six weeks and then eating two slices of bread and see how you feel.
If I make a mistake and eat wheat it knocks me out for about a week.

Other than that I'm now almost pretty normal and manage a full time job and have three kids.

I'm sure I have posted on your threads before OP as I have a lot of symptoms similar to yours. The main that helps me is max liquid dose of vitamin D daily. I also have sleep apnea.

I have exhausted every test over two years and there's no stand out cause found. Go refuses to send me to chronic fatigue clinic

Thanks everyone for their thoughs, so I found out that my latest pelvic ultrasound found two "avascular myometrial cysts" and "likely adenomyosis". The GP surgery said make a routine appt and from what I can make out from the description this seems a benign growth. But need to see what the GP will say next week.

A friend suggested that uterine cysts can produce their own hormones I am still skeptical but it could be a cause of being tired I hope. We will see.

Same! Taken years for me to finally get a Hashimoto's & hypothyroidism diagnosis. It took me going to a private specialist because NHS kept telling me my thyroid was normal. It was not.

I now wince every time I see someone post on here that they're permanently exhausted but thyroid is "normal"

Sorry I have just seen that you did get all thyroid bloods properly tested yourself! Seems you have been very thorough. Unfortunately it's so common that people are told their thyroids are fine when they're not.

Also thyroid antibodies need to be checked. My TSH was "fine" but thyroid antibodies off the scale. Having started thyroxin I feel better then I have in years. Also have diagnosis of CFS and Fibro