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Pain with no diagnosis - please help

5 replies

Emmasian94 · 26/11/2023 22:07

My dad, aged 72 started suffering with pain in the summer. It started in his neck, then shoulder, then back, then his legs and arms also started aching. He's had two sets of blood tests which all came back 'normal' other than one LFT test, alkaline phosphatase - was a bit raised. He was given many different pain relief tablets which didn't do anything.
Around a month ago his hands started hurting, then they were swollen & tingling, now his wrists are affected. Over the last few days he said it feels like neuralgia, nerve pain where he can't stand anything touching his hands or wrists.
An X-ray on his shoulder confirmed osteoarthritis but very, very mild. The pain doesn't match the diagnosis. Physio also didn't help.
I've mentioned rheumatoid arthritis and he's going back to the doctors this week.
He's really struggling and I cannot stand seeing him like this. His quality of life has completely gone. I'm just wondering if this sounds similar to anything anyone has also experienced? I'm open to any suggestions that we can take to the doctors as I'm at a loss. Thank you.

OP posts:
Iona345 · 27/11/2023 11:59

Polymyalgia rheumatica may be worth looking at, particularly if it is worse in the morning. Although less of a hand and wrist issue. Always best to see a doctor but I find these days you have to do quite a bit of DIY seaching as NHS so stretched. Ideally he'd be seeing a rheumatologist and/or neurologist but it's so hard to get an appointment. I ended up paying privately and then being discharged back to NHS with at least some vital information which led to getting seen by the right people.

Emmasian94 · 28/11/2023 14:19

Iona345 · 27/11/2023 11:59

Polymyalgia rheumatica may be worth looking at, particularly if it is worse in the morning. Although less of a hand and wrist issue. Always best to see a doctor but I find these days you have to do quite a bit of DIY seaching as NHS so stretched. Ideally he'd be seeing a rheumatologist and/or neurologist but it's so hard to get an appointment. I ended up paying privately and then being discharged back to NHS with at least some vital information which led to getting seen by the right people.

Thank you. It really is so difficult. I've not stopped researching. I have also sourced a private rheumatologist as I know he's in so much pain we cannot wait for an nhs referral. Autoimmune problems do run in the family but it's just so hard when there are no markers in the blood tests. Everything is a waiting game, but I have no patience when someone I love is suffering.

OP posts:
Iona345 · 30/11/2023 13:12

Good idea. It's expensive but I think worth every penny. I've given NHS 5 years to plod along for a diagnosis and having a private rhum give me a list of lines of enquiry has sped things up as the GP is out of their depth and the referrals to see NHS specialists so long. Good luck!

Panackelty · 01/12/2023 17:10

So difficult to work out these things, has any medication changed recently? I remember my dad could hardly move once, my mum was convinced it coincided with a change of statins, they changed them again and he was able to walk around again.

DrLucyVanPelt · 01/12/2023 17:34

I'd be concerned about polymyalgia rheumatica with symptoms and age. Has he had an ESR checked on his bloods (is a marker on inflammation)? I'd be asking his doctor about this as a possibility, if suspected it can be treated with a course of steroids and if PMR the symptoms often settle very quickly. I hope you get some answers and your dad gets better soon.

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