What is wrong with me?

[worktired]

I am physically exhausted. My body aches all the time. I don't sleep well as the aches & pains wake me up.

I have zero energy. I'm overweight & need to exercise but even walking a couple of 100m makes me struggle. I've tried swimming & Pilates, but swimming is painful on my joints & my movement in pilates is so limited (& causes me pain) that it's not worth me bothering (I did Pilates for a year & found this got worse, not better).

I'm really limited in what I can eat. Carbs (rice/pasta/bread) upset my system (but I test negative for coeliac), fat upsets my system, sugar upsets my system.

I have diabetes and PCOS - even with help from my hospital specialist, I can't get diabetes under control. We have tried everything out there - the newer drugs make me itch (forxiga) or mess up my otherwise unpredictable digestive system (ozempic).

I also have fatty liver disease & high blood pressure, which all point to metabolic disease, but there doesn't seem to be any treatment for these that I haven't tried!

I've had many tests, thyroid, hormones etc but everything is negative. I was on HRT for a while, it didn't feel like it made a difference (in fact I put on loads of weight around my middle after starting it) I stopped it to have some tests done, but haven't restarted it as I'm not sure what the point is.

Anyone have any advice??

@CazY777 weirdly my scalp is awful at the moment. Could this be linked?

Take it easy on yourself @worktired you don’t need to do a lot just a little and acknowledge even the small wins! Any progress is amazing.

By the by, I recently discovered that food sensitivity testing is only £40… I had envisaged hundreds!… so perhaps another relatively accessible helpful thing to further investigate.

@Robinni
By the by, I recently discovered that food sensitivity testing is only £40… I had envisaged hundreds!
What kind of testing, eg gluten only, and where did you get it from please.

Psoriasis is a visible red flag for auto-immune disease. I swear if I hadn't had a scary outbreak of severe psoriasis a few years ago I'd still be getting told there's nothing wrong with me, despite having arthritis, idiopathic hypertension, thyroid disease, blood clot issues, persistent pain, fatigue, etc etc. (And I'm normal weight and eat well.)

Also, psoriasis and psoriatic arthritis / arthropathies are sero-negative conditions. That means the disease doesn't show up on the basic blood marker tests.

@worktired yes it's possible it could be linked. Your symptoms sound a lot like mine and I've been refered to rheumatology with suspected psoriatic arthritis. I don't have any of the classic psoriasis plaques on my skin, but my scalp is awful and I have pitted nails, and psoriasis in my family. It could be worth you looking into this, metabolic syndrome, fatty liver and stomach issues can also be linked.

Thank you - I'll look into this.

A few holistic practitioners near me do it for between £40 - £55 (just checked them all), no skin prick or scratch. Takes just under an hour. Worth a shot!

Google “food sensitivity testing” in your area.

Please don't let them fob you off with being 'sero negative'.

@AutumnCrow I'm seronegative for myasthenia gravis (a rare autoimmune condition) but have all the quite distinctive symptoms and thankfully had a positive result from an EMG test (it affects the neuromuscular junction so they can test using electrical currents).

It has made me realise how being "seronegative" really doesn't mean you don't have the condition, just that the blood tests can't always pick it up. About 20% of people with myasthenia are seronegative and diagnosed through symptoms /EMG. And it used to be higher until they discovered more antibodies

Good luck op

Hi OP, you sound like me ten years ago after I was told I had CFS and was discharged from consultant care to get on with it. I actually had secondary hypothyroidism, ferritin deficiency, low B12 and folate and a serious vitamin D deficiency.

I would get some proper blood testing down, privately if necessary, and then get someone who knows about this stuff to interpret them for you, who you will probably find on Health Unlocked. I would suggest FBC, a full TFT (TSH, FT4, FT3, TgAB, TPO), serum B12 and serum folate, serum ferritin and vitamin D.

There is usually something underlying that can be found quite easily if you do the right tests and interpret the results correctly, but you might have to become your own expert along the way.

I've been on the max dose of metformin for many years

It's extremely likely you will be B12 and Folate deficient because of this, no matter what your test result levels show. You will also need B12 injections rather than supplements to correct it, as Metformin reduces intestinal absorption

I also just want to point out that there is a good chance it is more than one thing causing your ill-health, so don't rule things out if some of your symptoms are not explained by it. It is very common for chronic illness to be like a jigsaw, with each piece of a puzzle needing found, rather than one straightforward condition causing everything