Can anyone help diagnose me?

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Or give me an idea of what to say to the GP? I know strangers online can't diagnose me but I wonder if this sounds familiar to anyone.

(Not so) Brief history - ongoing fatigue. Got diagnosed with CFS a couple of years ago but always felt that didn't quite fit as I'd be wiped out for a couple of weeks then totally fine for 6weeks. No pattern. Had extreme lower back and hip pain for months around 1.5yrs ago. Spinal MRI showed nothing. It gradually got better over the course of a good 6-9 months or so.

Lots of joint aches (knees, ankles) but I'm hypermobile so gp just put it down to this.

I have many heart palpitations/skipped beats. Even the nurses if they ever check BP and pulse comment on how many skipped beats I get. ECG was fine.

I go through phases of dizziness when standing. Again, no pattern. I'll be dizzy every time I stand for a couple of days then nothing for ages.

These are what are bothering me mist though... I get feelings on my thigh that feel like I've scalded myself. Skin feels sensitive to touch and even clothes feel sore in the skin. Again, this isn't all the time and follows no pattern. On same limb, the outside of my big toe has been completely numb since July. I also often feel like a bug is on my leg but nothing there when I go to swat it away. I sometimes get the burning feeling on my scalp and it hurts to brush my hair.

Had Doppler to check blood flow in my foot and it all sounds fine.

At one point a year ago, a blood test showed slightly high (1800pmol) oestradiol but that was a one off. And one time my cortisol was 281nmol which I read was borderline low for the lab near me but gp said was fine. Everything else has been totally normal.

Gp has just decided that he'll never get to the bottom of it. My bloods are fine so that's that.

But I still have a numb toe and painful patches of skin.

I am fairly certain my GP has me down as a hypochondriac. But these things are very real and I don't think it's unreasonable to try to get to the bottom of what's causing them because numb toes and burning skin just isn't nice.

I'm going to bed now but would love to hear from anyone who thinks any of this rings a bell as I am speaking to gp in a week and have no clue what to say to him

A deficiency of vitamin B-12 is most often linked to burning feet sensations and tingling in the finger and toes. Burning and numbness may also occur in the legs, arms and hands. Though most B vitamins are readily available in foods, a vitamin B-12 deficiency is common, particularly among elderly individuals.

Im not saying you’re elderly! B12 deficiency is getting more common and the levels are set really low in the U.K.. they could be marked as normal but you can still be symptomatic at the lower end of the normal range.
It would be worth getting a print out of your blood test results and seeing what your figures are and how they compare to the labs reference ranges.

Have you ever seen a Rheumatologist? I’ve got an inflammatory arthritis and I get some of the symptoms you describe.

Your symptoms sound familiar to something I experienced 10 years ago. No diagnosis from gp/hospital tests and I thought my life would never be the same, but now fully back to normal. A lot of my recovery was trial and error. Two things that I believe helped was a low sugar diet which included not eating fruits and high frutose vegetables, to bring my body (good & bad bacteria) back to balance. I also took a vitamin d supplement which helped with dizziness. You really have to listen to your body and not push through it. You body is telling you it needs to heal so let it. Don't feel guilty when you need to rest and try to rest before you are forced to stop from fatigue.

Have you had a test for Coeliac? You can get all sorts of weird symptoms, including tingling and numbness in extremities and joint pain. Not everyone gets gut symptoms.
My brother has just had a very high Coeliac test result, his symptoms weren't obviously digestive. He has had reactive arthritis and never felt quite right since, various vague and seemingly unconnected symptoms.
Apparently Coeliac can be triggered by illness or stress or even pregnancy if you carry the gene.

It also leads to all sorts of deficiencies

I have a friend who was originally diagnosed with CFS but the diagnosis oater changed to postural orthostatic tachycardia syndrome (PoTS) - I am not any kind of expert but I gather CFS is a fairly useless and unspecific diagnosis that basically means "one of your symptoms is fatigue" but the fatigue may actually be part of another more useful diagnosis

Have you tried going keto? It seems to help with so many ailments and reduces inflammation.
Might help.

I have had weird symptoms, yours sound possibly a bit neurological (sensations in foot and scalp) which are notoriously hard to diagnose, and many are benign but just troublesome and can ebb or flow. The heart skipped beats, honestly don’t know and whether that is related or not.

What I do know is that it massively helped me to get bloods checked for B12, Vit D everything. Then get really healthy, I’m still getting there I don’t exercise enough. I had low Vit D and B12, they didn’t say my B12 was low but it was now I realise it just one off the borderline. It’s good to get your bloods checked and diet good and exercise for at least 3 months, see how you feel then as it can rule out a lot of stuff.

You mentioned being hyper mobile. Have you looked into that properly? My son and I are hyper mobile and it runs in my family. I didn't realise till I was older (late 30's) just how many symptoms there are and how debilitating it can be. Also look into Elhers Danlos syndrome as a lot of the symptoms cross over.
Unfortunately there aren't many doctors that specialise in this so it's hard to get a complete diagnosis

Thanks for all your replies! Trying to remember them all as I have to dash to work and can't reply individually.

B12 was checked last week and is fine, no inflammatory markers showing in bloods, saw rheumatology when I had my back issue and other than being a bit bendy, nothing to note.

I had thought about pots but wasn't sure it fit because my issues all come in phases and I assumed pots symptoms wouldn't come and go.

I also looked at eds criteria and although I fit some, I'm not sure I'd fit enough for diagnosis.

I think cfs was literally thrown at me as an I don't know what else to think of thing. But it's good to hear other people have had similar problems and got back to normal eventually!

Oh and vit d all good too! Will read up on coeliac to see if anything jumps out at me

My guess is POCS you have a lot of diabetic symptoms which are linked to POCS

I take it you are not on the pill? This helps?

I would ask for an ultra sound of your womb and a diabetes test

Like previous poster mentioned, look more into hypermobility syndrome

My dd was diagnosed some years back and we were lucky enough to get a very good consultant. She had years of severe migraine, joint and skin issues, fatigue, gut and bowel problems and dizziness. Might be worth looking into that more x

Dysautonomia? Pots is one type

Another vote for Elhers Danlos Syndrome. My whole family have got it and between us we have all of your symptoms. I was diagnosed with M.E/CFS as a child and have only got answers in the last few years. You get a diagnosis through a geneticist or a rheumatologist.

You can test yourself for PoTS, there's a YouTube video that tells you how. Could be related to EDS or another autoimmune thing.