People with unexplained symptoms

[MorriseysGladioli]

That's me.
Unexplained problems, tests are mostly clear, and gp less than sympathetic.
I'm sure there are others in the same boat?

I'm beginning to feel like a hypochondriac, but have felt so unwell for such a long time.
Anyone else?

Me as well. Tests always come back borderline for things eg my thyroid results weren't normal but not severe enough to treat. And they could detect inflammation in my bloodwork but the other tests couldn't identify my joint pain. I always feel like a hypochondriac.

It was the nurse who uncovered the vit d deficiency by requesting on the last lot of blood tests.
She seems to have taken onboard slightly that there may actually be a real issue.

Same here, blood tests fine, made to feel like an inconvenience. Had debilitating fatigue and muscle/joint pain for 9years and still no diagnosis. Had to give up my job, lost my friends, pretty much housebound. Given antidepressants because I can't cope with it anymore, though a diagnosis and treatment/help would be a more constructive way to address the situation. I'm fairly sure it's ME, and 2 doctors have agreed, but nobody wants to commit it to writing.

That's sobering reading, because I feel I'm heading down the same path.
Spending more and more time HAVING to rest, getting taxis to work to avoid having the pain and fatigue of walking to the bus stop.
And now, at home and dreading going back to work because I'm not going to magically get better in a weeks time.

I think It's the flaw with medical system in this country. It's great in a way, but not so great in another way. In my native country, every visit to the dr costs money, but at least we have choice to pursue, change dr, or go to other hospital.

My dc took so long to get diagnosed with illness, nearly ended up him needing transplant if it took longer. It only took one ultra sound to get him diagnosed, but he wasn't offered or referred, until he was seriously ill, despite numerous visit to gp and A&E. And my dc was a lucky case, there were others who were too late while waiting for the surgery in specialist hospital.

It is a flaw, I agree, unless someone has a doctor that is totally onboard, prepared to listen and refer you on until the solution is found.
I do get that services are overstretched, but when I was told I was a mystery woman I pointed out I'd had no physical exam, no urine test, nobody had given me even a brief 'check over'.

And when they did.
All clear!
It's humiliating and embarrassing and makes me want to give up.

It's not in your head but your brain could be creating more issues for you simply because of your fear that there is something wrong with you.

Please don't take this the wrong way, I speak as someone who had chronic neck/back pain for 10+ years, so I know what it's like to be absolutely convinced there is something structurally/physically wrong!

Having extensively researched the mind-body connection, I am 80% pain free now. For example, you know how you get upset tummy or feel sick when you're nervous for example, it's your brain sending a signal because of what's going on. A lot of chronic conditions can be attributed to this theory, that your brain gets 'stuck' and sends the wrong signals.
Pain (and a lot of other symptoms) comes from brain signals.

I would 100% recommended you read this book. https://www.amazon.co.uk/Way-Out-Revolutionary-Scientifically-Approach/dp/1785043102/ref=mpssa111?crid=20M2W2LLD8XTX&dchild=1&keywords=the+way+out+book&qid=1631187735&sprefix=the+wsy+out&sr=8-1
I have read several, but this one has only just come out and sums it all up much more clearly than others I've read.
You've nothing to lose!

I also recommend downloading an App called Curable, which was where the recovery process started for me.

Best wishes

@MorriseysGladioli do you have more than 1 GP in your practice? It would be worth seeing a different one if you can. I had years of puzzled and/or dismissive GPs before I finally got one who admitted she didn't know what was wrong and referred me to a general medical consultant at the hospital. I still have no answer but some fairly serious things have been ruled out, which would never otherwise have been checked out. I feel so lucky to have seen that female GP, it was a complete fluke because I had given up asking for help with the fatigue and I only saw her for a routine gynae thing and mentioned the fatigue in passing as I was leaving.

Thank you both.
I'll download the app, and get the book, too.

I suppose I'll have to consider changing docs, as mine is basically a one man show with locums on occasions.
As said, nothing to lose.

That app looked promising but can't afford £60 quid right now unfortunately. Ho hum.

DD was like this for years. Back and forth from the drs with seemingly unrelated issues, but lots of them. I had to push and push and push for blood tests and referrals. They found she was anaemic and low vit d but never thought what might be causing it, even though she had daily sickness.

I asked for a coeliac test and stool sample test in the end and sure enough she was coeliac.

She was a bit better but still not right so I pushed for a second gastro opinion. Then due to more issues took her back to the GP and said I thought she had EDS and possibly POTS and could she be referred to rheumatology. GP looked at me like I was mad but referred her.

Sure enough she was diagnosed with EDS, POTS and fibromyalgia all on the same day. I read once that for coeliac the average time from first seeking help to diagnosis is something like 9 years and I think worse for EDS.

I saw something good recently - "if you can't connect the issues, think connective tissues". EDS is a connective tissue disorder. I also think dd may have lupus so I'm about to rev up for a referral for that but think we may have to go private.

I think I need to check out coeliac issues.
God knows I've been down enough rabbit holes from googling, but have never considered that.

Yes definitely ask for coeliac blood test, not everyone gets the sickness or bowel issues. Can just be weird aches and tiredness

Vit d can also cause pain/aches but if you're taking tablets and no improvement then either that's not what's causing the issue or you aren't absorbing the vit d. Have your levels gone up? Coeliac can cause malabsorption issues as your villi are flat.

What are you actual symptoms?

Ok starting from the top.
I'm going bald; have really thinning hair which is greasy about an hour after washing it. I reckon I have lost a third of it and now have none at the temples and front.
My eyes are red and bloodshot all the time. Not particularly sore but look it.
I have a rash on my body - it was red and raised but now looks like the spots a giraffe has.
Pins and needles frequently in my arms and fingers, and sometimes fingers look as if I have reynauds - blue and crumbly like being in the bath too long.
Fatigue. I can't even manage to walk for longer than about 5 or 6 mins.
Aches and pains everywhere - hips seem to be the worst.
My legs are swollen up with fluid when I wake up - 5 days out of 7 i reckon.
My arms and legs look scaly...
There is more.
Breathless at the least exertion.
Dizzy and doddery- I feel unsafe walking around.
Forgetful.
(Ps havent done a solid poo for years now!)

I don't know if my vitamin levels have gone up. The nurse said they wouldn't normally follow up to check, but I am seeing her next week.
I think my eyes may be a tiny bit better, but hairloss is much worse.

OK so number of things it could be, and could be more than one thing.

I'm assuming they've done a full thyroid screen? If they haven't done an ESR blood test I'd ask for that at the same time as a coeliac screen.

I'd be wanting a referral to a rheumatologist and asking about stuff like Sjögren's syndrome, rhemuatoid arthritis, vasculitis.

Please bear in mind I'm not medical.....but my dad had weird autoimmune issues, as does my brother, SIL and dd. So I have got some experience and especially when my dad was poorly spent a lot of time researching different autoimmune stuff as even though he was seriously ill in hospital for six months they never really diagnosed him with a definitive autoimmune illness for over a year.

Also Wegener's granulomatosis.

Ask for a 9am cortisol test to check for cushings syndrome.

I have had blood tests.
All the usual ones in the beginning.
Quite a few levels were mildly out of range which would be fine if I felt ok. I wouldn't care less.
All of this started at the first lockdown and I put it down to wearing a mask in the heat (I'm a keyworker believe it or not!)
I just started with the eyes and breathless and swollen legs.
The rest of the symptoms have just kept coming relentlessly as the months have passed.
I have had some more in depth bloods done and am awaiting results.
Thyroid was one of the first bloods done and was within range.

If it’s your tsh that’s 8 and you have thyroid antibodies then I’d put money on you being hypothyroid. The nhs won’t treat until it’s over 10 but I feel awful if mine gets to 2. You can pay for a full panel of thyroid tests (medichecks I think) and then push the gp for a trial of levothyroxine. But it’s shocking how thyroid disorders are treated- other countries diagnose and treat with a tsh of 3.

I was taken into hospital 2 weeks ago as my face twists on one side and a stroke was suspected.
So, I have had mri on my brain - they found a low burden of white spot disease, which is nothing to worry about in terms of ms or the likes.

Have you looked into fibromyalgia?