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!

Sounds like it could be ME. The main symptom among so many is Post Exertional Malaise or PEM. Put simply it means that when you do minimal activity, housework, shower, short walk etc you fell exhausted and very unwell soon afterwards and it takes a couple of days or longer to recover.

Thank you, I was not like that before the childbirth and I dont ever recover now. I am not sure I have the PEM as such, I just get tired way more easily and need a break but then turn back to my unpleasant baseline of exhaustion.

I also read that with CFS/ME fatigue levels tend to fluctuate whereas mine stays just at the same awful but very consistent level.

Mine definitely fluctuates depending on how much or how little I do.

Have you had your B12 levels checked? If they are considered ‘low normal’ (in UK) then you may still have symptoms of deficiency. Have a look on health unlocked B12 deficiency and Pernicious anaemia forum pages. B12 deficiency can be brutal. And I suspect it can happen after pregnancy and childbirth (I think it can deplete B12). Did you use gas and air during the labour? This can deplete B12 levels (similarly to recreational nitrous oxide use). Don’t start supplementing with vitamins until you get levels checked. Do you have any pins and needles type symptoms, or tinnitus, or visual disturbances? B12 deficiency can be misdiagnosed as MS, dementia and other things (mental health disorders etc).

Thank you, my B12 is in healthy range, not even low normal. the only ones in low normal are vit D and calcium. Was tested for pernicious anemia too, negative. But thank you for your input.

It is possible to have functional B12 deficiency (where serum b12 levels are normal, but the body has problems accessing b12 at a cellular level), and unfortunately, testing for Methylmalonic acid levels and homocysteine levels are the only way to check for this. I don’t think GPs can request these tests, they are usually only available via hospitals (or privately). I have a functional b12 deficiency, and was particularly exhausted shortly after dc2 was born. I also have muscle fatigue / weakness.

Every time I read that someone's thyroid is 'normal', my heart sinks. This is what they told me, for nine years! It wasn't. It isn't and thyroxine replacement has been life changing.

To a doctor, ;normal' just means 'within the reference range'. It certainly does not mean optimal, and if all you have had tested is your TSH, well that isn't even a thyroid hormone. That test measures a pituitary function. It does not tell you whether your thyroid is actually working.

To be honest, it does sound like M.E. I've had it for over thirty years and I have all the symptoms you are describing. I really hope you get to the bottom of what it is. Unfortunately there is no single test for M.E, so it is by a process of elimination. Good luck! 💐

Ah, that's interesting. I did have a private blood test done for "active" B12, is this the same or different? I might look into getting those done in that case. Thank you so much, so many intricacies that one doesnt know about!

How old are you? I had my 3rd child at 37 and I slid slap bang into peri menopause with all those symptoms of crushing fatigue etc

Also coeliac can present like that? Don't need bowel symptoms to have it.

Assuming they have ruled out iron deficiency anaemia too?

Fingers crossed for you 🌺

Active B12 is what is bio-available in your blood, so is a much better measure of B12 blood status than ‘total B12’ or ‘serum b12’, (which measure both the bio-available, but also non-usable, B12 in the blood). But as the ‘active B12’ shows the level of bio-available b12 in the blood, not at the level of the cells, so you can’t tell from it whether you have a functional deficiency or not. MMA and homocysteine tests are needed for that. My last set of tests (paid for privately), my ‘active b12’ was high, but the MMA levels were also raised, showing functional b12 deficiency. I hope things resolve for you soon.

Oh wow, that's a great insight. Thank you, I will definitely look into it.

Oh thank you so much for your comment, in a way its comforting to hear that it might be M.E. What bothers me it is not fluctuating enough but then I have been pushing through my limit every day since the birth of my child

Have a read about spoon theory? It could be that your are running above your spoon limit every single day leaving you consistently exhausted. Where as if you stay below your limit you notice good/bad days more since you are not always pushed to the max all the time.

Is it possible to get childcare for a day or two and have a proper rest and see if there are any changes at all?

I have fibro and felt like what you describe when I was still working but I started having good days once I left and wasn't permanently overwhelmed.

What is ‘low normal’? Unless my vitamin D and iron /ferritin levels are optimal I feel like I’ve been dug up. The ‘heavy’ exhausted feeling is exactly how I’d describe it.

Thank you , I appreciate your point of view. I did check - and I was tested for TSH, FREE T3 and Thyroxine and i think the TS4 (cant remember what it was called), all seem within optimal range. A couple of years ago I was even tested for Addisons, all normal. But I do have a benign cyst (pretty large) in my thyroid but not sure if it affects functioning?

And and serum parathyroid hormone levels were checked too whatever that is!

79nmol/L with normal ranges given as [50.0-120.0]

Definitely not coeliac, was tested twice for that. and my hormones (FSH, LH, Oestradiol) + thyroid once are all within optimal ranges. Not anemia either but thank you, I am a bit tired of trying to figuring out what's going on.

I need to be put into an episode of House M.D.!

You're most welcome. I think as a PP has mentioned, if you're constantly pushing through, you will more than likely continue to feel the way that you do. It must be very hard with a young DC, I can imagine. The key is to find a balance and to pace. Easier said than done. I've had it thirty years and I'm still trying to find mine. Do you have a supportive DP? The problem with continuously pushing through is that, eventually, your body will say 'no more '. When I have bad crashes I can end up literally bedbound for three months. I wouldn't wish this condition on my worst enemy.

I could have written your post op. Down to the onset being after the birth of my 21 month old.. I had endless texts and x rays and tablets to no avail. Constant exhaustion, heavy feeling, exc situating muscle aches, tension, dizziness, sickness. Brain fog, confusion etc.. my GP is satisfied that I have fibromyalgia OR CFS. They don't seem to be choosing between one or the other. I have been suspecting that I may have POTS but my GP won't entertain the idea. Might be worth looking into if you've a good GP who is willing to look into it.

I could have written your post I’ve been fatigued since I had my son 8 years ago but it’s been really severe in the last four years. I’m having more bloods done on Monday the GP did mention ME however I do have a cyst on my spleen which I found out during a private operation I’m wondering if this cyst is sucking the life out of me I’ve literally just created a thread.

this week I have been so chronically fatigued I can hardly move.

I had a b12 injection at the doctors at the start of January (I had a private gastric sleeve so need to have these every 3 months) anyway about 12 hours later I felt like my old self my speech wasn’t slurred I was tired I wasn’t fatigued however the effects only lasted 2 weeks now I’m back to chronic fatigue GP told me to come in today for a top up which is unusual with a sleeve then said he wants to run more tests before giving me the top up. My levels are fine though so if I can’t get more I he round I feel helpless to what I can do. I’ll ost back after I’ve been to the GP

ha e you had your thyroid checked? Mines borderline. I must have looked a sight because the nurse called the GP in because I couldn’t keep my eyes open and I’m deathly pale

How old are you OP?

Oh, thanks so much for reaching out, I literally was starting to feel that I was the only one with these kind of symptoms.

I also wondered about CFS onset due to a very stressful pregnancy, and then in December 2022 I also had covid but I dont know, I am sort of sceptical about this all.

Do you feel like this all the time or do you have better weeks /days?