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Help,anyone have a clue what this could be?

5 replies

Goingon3yearsandcounting · 10/12/2021 19:57

I have been unwell for over 3 years ,at first whatever was going on was remitting and relapsing,but now the symptoms are there all the time and more severe.

I know I shouldn't be having to post this on a forum,but I'm struggling so much and desperate for some ideas as to what it all maybe.

Symptoms I have been suffering from:

Extreme fatigue and tiredness. Have to crawl up the stairs some days and can struggle to get up from a chair.
Hair falling out.
Skin rashes , intensely itchy sore skin that feels like it's burning.
Headaches.
Blurred Vision.
Muscle twitching.
Severe joint pain, particularly hips, knees and shoulders. Gait has changed because of the pain.
Angular Cheilitis.
Painful lumps under the skin.
Muscle stiffness and pain.
Muscle weakness, keep dropping things. Can't brush my hair without getting out of breath.
Boils that won't heal and reopen and spread continually.
Chest pain and breathlessness hurts to breath in deeply.
I have been diagnosed with chronic iron deficiency anemia and chronic folate deficient anemia,but both don't respond to oral supplementation and even with tablets levels barely rise.( Have a good diet)

For a long time ,my Dr would fob me off,do an occasional blood test,which would show the deficiencies, they would prescribe me tablets,which wouldn't work,they even accused me of not taking them. But wouldn't look into any further investigations and my symptoms just increased and got worse.

I changed Drs recently and he was shocked at my level's and why nothing was being done.
He arranged for referral to gastro, Colonoscopy and endoscopy was clear.
But I have had a CT scan which the Gastro Drs says shows possible signs of underlying inflammatory bowel disease,but has discharged me back to GP with no treatment follow up or plan.
So it's been over 3 years,I'm getting no treatment,no improvement the only thing I have been prescribed are pain killers,which they complained about having to prescribe "as they don't know what's wrong!"
I just want to feel better, to feel like me again,but I'm beginning to wonder if I will be stuck like this as I'm at a dead end with it all.

OP posts:
rainbowninja · 10/12/2021 22:21

This sounds awful @Goingon3yearsandcounting could you afford to see a functional medicine doctor who would look at your gut health as that's where most vitamins and minerals are absorbed.

They might be able to look at alternative ways of supplementing your deficiencies but also try and get to the root cause of why you don't seem to be able to absorb these things?

dizzydizzydizzy · 11/12/2021 14:24

Sounds awful, OP. I'm wondering about EDS.

giftswap2020 · 11/12/2021 18:52

Have you tried cutting out different foods to see if that makes a difference? Gluten/dairy for example?

lizkt · 11/12/2021 18:54

It sounds like a post-infectious illness. Ask for referral to rheumatology or immunology.

LiveintheNow · 11/12/2021 19:14

B12 deficiency and scleroderma?

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