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?

OP, it sounds like it's time for you to request your last two years blood test results and go through them with a tooth comb, noting any that are out of range either way or very low in range and then start researching. The forums on Health Unlocked are very useful in this.

That's how I found out that my ME was really non anaemic iron deficiency, severe vitamin D deficiency, low vitamin B12 and central hypothyroidism. All fixed now after nine years of increasing fatigue, pain and disability.

There are none that are more than a bit lower/higher than the range, although I have read that people can very widely within those figures.
Only my vitamin D was significantly low.

@Zeflyinghelmetandzevetcelery

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.

Well, I stopped asking after I came here as the drs are worse than in the UK re M.E. I was registering with one and she was scribbling away and when I mentioned M.E her pen hesitated.. a few minutes later, Oh you mean Chronic Fatigue.. Writes on. When I was in hospital for wrist surgery I duly told the anaesthetist I have ME to be asked, Do you know what that stands for? Yep and I reeled it off. And really? There is little if anything they can do. Or will do. I decided that banging my head against that brick wall was adding pain to pain. Oh and they have never asked to see my UK consultant diagnosis report ..only just thought of that and they cannot access my UK medical notes without my written permission; they simply ar enot interested. My saving grace is that I have severe Raynauds in my feet so that they can barely feel a pulse and even they know that that is autoimmune. and as there is nothing they can or will do? I decided to simply care in my way for me; I am on codeine for pain so just get repeat scrips. Are you on a long term sick note etc? When I reached UK pension age I cheered With me? Well see my earlier long post. And I enjoy the things I can still do and enjoy howeve r small they are and some days they are very small Do something YOU can and that YOU enjoy. Here for you pm if you want

I am even having trouble getting a short term sick note.
My usually affable dr has become quite cross that I won't just bugger off but I am virtually housebound at the lately.

@NaToth

OP, it sounds like it's time for you to request your last two years blood test results and go through them with a tooth comb, noting any that are out of range either way or very low in range and then start researching. The forums on Health Unlocked are very useful in this.

That's how I found out that my ME was really non anaemic iron deficiency, severe vitamin D deficiency, low vitamin B12 and central hypothyroidism. All fixed now after nine years of increasing fatigue, pain and disability.

The consultant who finally diagnosed ME had had me in hospital three weeks and every test there was. Saw three other consultants. He was top in his field. And the GPs trusted and so mental illness was scotched as a diagnosis. Apart from one who assured me that M,E is partly mental illness.. The thing is that the weeks before I was admitted I had had infection after infection and been living on antibiotics so now I wonder if he realised I was applying that to my thirty years in the wilderness..

But really. DIY medicine.. You did so well

@SoloISland I'm close enough to getting my occupational pension that I'm comfortable living on my savings until then. I was unable to continue working, but silver linings and all that, it was a great job in a toxic workplace so I don't miss it too much. Not overdoing things on the good days is something I'm still learning, and it's very hard! I think you have it right about doing things you enjoy and I'm going to try doing more of that and less of the neverending list of chores.

[quote Zeflyinghelmetandzevetcelery]@SoloISland I'm close enough to getting my occupational pension that I'm comfortable living on my savings until then. I was unable to continue working, but silver linings and all that, it was a great job in a toxic workplace so I don't miss it too much. Not overdoing things on the good days is something I'm still learning, and it's very hard! I think you have it right about doing things you enjoy and I'm going to try doing more of that and less of the neverending list of chores.[/quote]
Bravo...

And on occasions when you HAVE to overdo. then rest up. Yesterday here I had a cat-crisis and other nonavoidable stuff.
Today as was unavoidable I am a wreck. Can barely walk and feel as if I am not here. Dreadful but I am snug abed and there is food to grab. And I am enjoying youtube and here and knitting simple stuff. and snoozing Tomorrow is another day. Life is for LIVING not putting on hold. We know we are ill. That is what matters. We can look out for our very real health problems. SO glad you will soon have the pension. A red letter day for me that was. No more medical certs.

@redpandaalert

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.

What rare disease have you been diagnosed with?

@SoloISland that sounds like a perfect rest day. 🙂

@OldTinHat

It's so rubbish for all of you. I'm 50 and have been in pain since just before I was 20. It's a joke tbh. Well not, obviously. I've had surgeries and treatments, I was told I'd feel better in middle age, I'm feeling worse now I'm very old! 🙄 During my 3rd pregnancy aged 28 a consultant told me it was my own fault I was in pain and couldn't walk because I was pregnant! None of the medication works but I still shovel in naproxen and amitriptyline! Tramadol, diazepam, codeine, all the other stuff didn't touch it either. I sympathise with you all and so hope you all get answers and treatment x

You are still a spring chicken at fifty.. lol I am almost eighty and still do not see myself as old....

Op you talk about your face twisting on one side , do you have a drooping eye on one side as thought he muscles don't work?

Are any of you ladies short in staure?

Have any of you ever read up on mitochondrial disease.

Post your symptoms on here, you never know, someone might recognise them.

My DH had a mystery condition from childhood. He saw numerous neurologists, no-one knew what was wrong with him. When DS developed the same symptoms, I posted them on here and within a few minutes a kind Mumsnetter suggested what it could be. And they were right! DH and DS now both on medication and the condition is under control.

Not saying you will have the same luck as us, but you never know, right?

@ArthurMillersGoat

Op you talk about your face twisting on one side , do you have a drooping eye on one side as thought he muscles don't work?

Are any of you ladies short in staure?

Sometimes my eye droops, but more often it twitches, and my mouth is becoming set in a downward droop on the same side. It's not the best look.

I don't think I'm particularly short. 5ft 4ins.

Mitochondrial disease is a metabolic disorder. Mitochondria turn food and oxygen into energy.

Its too complicated to explain but essentially it can affect any organ of the body to different degees. It is a specialist thing to be tested for .

There are many different types of mitochondrial disease differing in severity as well.

One thing that is universal seems to be the exhaustion.

Pm me if you wish.

Thank you.
Off to Google I go again!

I have sent you a PM.

Thank you

@Bumblesbumbles

I was the same until I was found to be coeliac and later diagnosed with primary hyperparathyroidism. Sometimes they need to expand the blood tests they are requesting from just basic ones

I was just going to say - could you be coeliac? It can cause a whole host of problems, including neurological ones (gluten ataxia) and a specific rash.

Just had a proper look at your list of symptoms and to reiterate I would seriously recommend you get a blood test for coeliac disease. There’s a new blood test now which tests something different - I had three tests in my life and only the most recent one came back positive which was then confirmed by endoscopy. I thought I had fibromyalgia or CFS - constant sore skin, aches, exhaustion, nausea, gastro issues, rash…. I also bizarrely get swollen ankles though not sure if it’s related!
Please look into the neurological symptoms of coeliac disease. Peripheral neuropathy can cause pins and needles feeling.
I am obviously biased as I am coeliac myself but your post is ringing all sorts of bells. It took 20 years of vague symptoms and clear tests from age 7 to 27 for me to be diagnosed!!!!