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?

Yes, I fit all the criteria for fibro, I know, or sjorgens, but with bo support or diagnosis, I'm going round in circles.
My gp gave me 2 weeks off but was tutting and sighing and asking "so what's wrong with you, then?"

My 20 years of pain and fatigue finally led to a diagnosis of Axial Spondyloarthritis. But when I first suggested it GPs were completely dismissive and said no way... I had to pay for private tests and a private rheumatologist to be taken seriously and now the GPs do at last believe me! It is a condition that is not often heard of but is actually more common than MS so worth a google. It often goes hand in hand with a number of other conditions too so can explain a miriad of symptoms in some sufferers. (Colitis, psoriasis, uvevitis to name a few) Might be worth checking out.

Thank you all.
The most refreshing thing is to be able to "talk" about all this!
I am not afraid of it being something. Not scared, and not the anxious type.
Frankly I couldn't give a flying fart whatever it is.
I just have a practical need to be at least half functional.
I really do appreciate all of your kindnesses (is that a word?)

@moralcompass

Have you looked into fibromyalgia?

This is what I went through. The misdiagnosis at the start blinded them to the reality and they stopped listening. The wildly erratic blood sugar levels almost stirred them . They checked for diabetes then shrugged their shoulders. And added more tranx to the mix

After 4 years of chronic pain I have been diagnosed with a rare auto immune disease, highly treatable, even though it takes months for the drugs to work. However, it is difficult to diagnosis as it doesn’t to show up in blood tests or MRI/X-rays. I wonder how rare it is and whether people are being misdiagnosed with fibro.

@TB445

My 20 years of pain and fatigue finally led to a diagnosis of Axial Spondyloarthritis. But when I first suggested it GPs were completely dismissive and said no way... I had to pay for private tests and a private rheumatologist to be taken seriously and now the GPs do at last believe me! It is a condition that is not often heard of but is actually more common than MS so worth a google. It often goes hand in hand with a number of other conditions too so can explain a miriad of symptoms in some sufferers. (Colitis, psoriasis, uvevitis to name a few) Might be worth checking out.

When I was in hospital for three weeks for tests with the consultant who finally decided it was post viral fatigue ie M.E, I saw several other consultants and the rheumatologist thought it was fibromyalgia which was not accepted by my consultant. Neither was mental illness.

All these diagnoses are a matter of exclusion. He just went on searching, observing, excluding as he knew there was something very wrong going on

Have any of you here looked into CFS/ME?

I just would like a name, any name, put to what is going on for me because I feel like a fraud at the minute.

@SoloISland Yep, my GP diagnosed me with fibromyalgia. And then CFS. It was only when my nephew got a diagnosis of psoriasis that I stumbled across axial spondy, its the same family of conditions, that I twigged what it could well be...subsequent tests proved me right

@CovidCorvid If your DD has PoTS and EDS she more likely has MCAS than fibromyalgia. The two are often conflated, especially as MCAS aware doctors are very rare. Have a look and see what you think. Treatment is antihistamines and mast cell stabilisers. Only private unfortunately as the NHS don't recognise it yet.

Just putting this here as I believe MCAS is the underlying cause of so many people's ongoing illness. Particularly ME. Treatment is via private consultants only, unfortunately, but there is medication and some GPs will prescribe it.

There is so much overlap between all these conditions.
I hope all the other undiagnosed people have a good read of this thread.

It’s awful reading this thread and realising how many of us are out there, putting up with various symptoms without any concrete diagnosis 😫

Does anyone else feel like they are just existing right now, lurching from one day to the next, wondering what symptom is going to be worse tomorrow or whether a new one will appear? I’m currently waiting to see a neurologist (6 month wait) so have another 6 months of putting up with these mysterious pains that might not even be neurological! 🙄 I need a wisdom tooth removed, just been told that’s a year long wait at the hospital! I’m waiting for an ultrasound on my entire abdomen, from my stomach, gallbladder to my bladder and ovaries etc. 😩 I’m also seeing a chiropractor for disc/lower back pain. I’m a mess and nothing I am doing seems to be helping. I’m not even 40 yet but now wondering whether all my symptoms could be peri menopausal… 😫

Here’s hoping we all might get some answers in the future 💐

Do I feel I'm just existing?
Yep, without a doubt.
I havent even been for a mooch around the charity shops for 2 years now; I simply haven't the energy.
Plus there is the greasy bald head issue.
Anyway, perhaps people can get info or support from others here, which can be at least one positive.

I have a lot of stuff which is explained by two or three diagnosed long-term conditions, but a load of others on top, which aren't. At one point I spent so many hours in nhs waiting rooms that I felt like there was no point going home in between, that I might as well live at the hospital or at least the surgery. Can't really be bothered about it all nowadays. Some days I'm OKish and some days I'm not. It's beginning to piss me off a bit again because I'm starting to get more bad days than OK ones though.

[quote BonnesVacances]@CovidCorvid If your DD has PoTS and EDS she more likely has MCAS than fibromyalgia. The two are often conflated, especially as MCAS aware doctors are very rare. Have a look and see what you think. Treatment is antihistamines and mast cell stabilisers. Only private unfortunately as the NHS don't recognise it yet.[/quote]
Yes, sorry missed MCAS off the list, she has that…and yes I’ve always doubted the fibro diagnosis. I have MCAS as well and also have now got a colleague officially diagnosed with it after I started work with her and she told me all her symptoms I told her to ask about MCAS!

I was 'off,' and also exhausted, for months after covid in spring 2020. I spent ages on the sofa. I had a few flare ups with exercise. I had heart and other symptoms. But lo and behold, I've been fine all this year, if a bit fatter.

It must be awful. We come across it daily at work. The textbook response is that they won’t find anything so someone will finally say, oh it’s chronic fatigue or fibromyalgia. (Which most doctors don’t actually believe exists) and send you on your merry way with basically more pain killers and then continually swap them around with little to no effect. Try addressing diet, in particular your gut bacteria, it’s a linchpin to a great deal of your health. If you’ve been smashing pills like no tomorrow it’ll be depleted. Dr Rangan Chatterjee speaks very well on this and is very knowledgeable. Have a read of his gut book or he did a great series called dr in the house.
Tai chi is amazing for pain.

You said some results were out of range slightly - was calcium one of them? Low vitamin D combined with calcium higher than normal can indicate hypoparathyroidism (nothing to do with thyroid) and can cause a huge range of non-specific debilitating symptoms.

I'll have a look, thanks.

Just checked, and it was within range, but thank you for checking.

@SkinPaperThin

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

There is some free content you can try before paying for anything, or at least there was when I first used it.

@MorriseysGladioli

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.

I can't remember if you said how old you are OP, but a lot of those symptoms sound like peri-menopause, especially the hair loss. If you're over 45 it might be worth considering HRT

I'm late 50s, so went through the menopause years ago, ironically, with nothing worse than hot flushes.
I would have liked HRT, but couldn't because of familial breast cancer.

Well, as the drs either do not know or seem not to care? And as where I live now I have little access to primary heath care? And as there is no real treatment for eg M.E?
I simply reorganised my life around my illness with the help of eg ME Assication an experienced fellow sufferers.
Got help form a voluntary group re getting off tranx etc

After thirty years of hell with drs? No more.
And I am far far better off this way.

I see a dr almost never. Repeat scrips and emergency only. Know something? It works. I am living within my illness my way and none of the angst I see here.

Treatment seems to be symptomatic? Fine . I need to close my day down early? Fine.
When I asked real experts re the way to support ME In old age they told me they have no idea as so few live t my age of nearly eighty. And most die of what they call overwhelming infection,
SO after discutssion with folk I trust, I came into isolation to avoid infection and have been here since.

One medical emergency when I threw up so much with a migraine I was bringing uo blood,
I was evacuated from the island by chopper, treated grand and came home. That was fifteen months ago.
Wondering what you do if the dr says it is CFS/ME?
There is abundant info and support online from the real experts. Experienced fellow sufferers who have been helped and have helped and supported each other.
Far more than any dr.
Join one of their forums? Learn how to cope and improve?
I stopped banging my head against that brick wall and am far far better for it.
Easier for me maybe having been so abused by drs for allegedly being mentally ill... lol... for thirty years of sheer hell...
We have to live with these illnesses and within them, so maybe stop banging heads against brick walls and enjoy what we have? I enjoy what little I have hugely. And it is very little

Sorry to rant but I see so much frustration and fear here; I went through that too but am out the other side now.

I am quite happy to enjoy a much more relaxed approach, but I have a teen, and the system says I must work, particularly as, as it stands, there is "nothing wrong with me".
I would be perfectly happy to go with the flow and rest up when needed (all the time at the moment)