Pain with no diagnosis - please help

[Emmasian94]

My dad 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.

Have you thought about fibromyalgia?

Different for me as my problem is my spine is crumbling and trapping my nerves. Took fucking ages to get that identified I was fobbed off and dismissed even when I couldn't work the pain was so bad. Some days I couldn't walk.

I'm commenting because what you said about pain killers not helping struck a cord. I feel like when you ask for pain relief they think you are just after the strong opiates. Even morphine doesn't help me. His description of the tingling pain sounds like nerve pain. I've given birth without pain killers and it hurt less honestly nerve pain is debilitating. I was also told my spine wasn't pinching the nerves enough to account for the pain. What helped was gabapentin- it's for nerve pain you need to be asking for the correct type of pain relief. And take note of what positions/posture make it worse. I discovered sitting down made me worse which was hard because when I'm hurting I don't want to stand but now I only sit down to drive (half hour max) or eat out. No sitting watching tv or anything like that. Standing or laying down focused on my posture has made life bearable for me personally. Had to work it all out for myself NHS was no help

My 15 yr old son has this.
In the space of 3 months he's gone from a 'normal' teenager, playing rugby, out with mates to wheelchair bound.

He began complaining of a sore back, then hips, then knees, then ankles.... day by day a new part of his body hurt.

The part of his brain that controls pain signals has basically malfunctioned. His nerves send pain signals to his brain constantly & his brain allows them through.
Pain killers don't work as his brain doesn't recognise them, they are designed to stop the signals going through but his is basically an open door for want of a better phrase. Before diagnosis he was on morphine the lot, made zero difference!
Even touch, a fabric or a breeze his brain can interpret as pain.
He cannot walk more than a few steps & even that is agony.

Hes had every test possible Inc 3 MRI scans. Everything has always come back normal, it's so frustrating at times.

We have now been referred to the Bath Pain Clinic & are awaiting a rehabilitation stay in the new year.
Unfortunately there's no cure but they teach you to cope/manage & find a way to live life with the pain. A lot of his treatment will be therapy (through he does have hydrotherapy etc too)

I completely understand how awful it is to watch someone you love in so much pain. There's nothing worse than watching my own child in agony every minute of everyday & not being able to do a damn thing about it!

Ask for referrals to pain clinics, they are the ones with the specialist knowledge. Usually you have to go through all the other treatments/medications 1st though & all other causes ruled out.

Feel free to drop me a private msg if you like. We are in the thick of it with upcoming treatment but I have a lot of experience in the process to getting the diagnosis.

Manchestermummax3. I am sorry to read this.
may a cure be found.

Following with interest. I started having chronic pain all over my body last year and still do. Some days I can't walk without being in agony. I also have no diagnosis and just keep getting fobbed off..

I do have every sympathy for Manchester Mum, I fell over and hurt my back a year ago, and I've seen every physio osteopath chiropractor privately and on the NHS. told to take paracetamol. What? I've been on very 4 strong painkillers, a year later I'm no better off, and no one seems to care, no one seems to want to get to the root cause of the problem and solve it. I actually said to one of them so you want me to take very four different very strong painkillers. What for the rest of my life? what about cause and effect? what about the root cause? just no one seems to care.

Has there been further investigation of the raised Alk Phos. It can be due to a bone or liver issue and needs further investigation to clarify which.

This would be my first thought as his main symptom is bone pain.

Basically he needs a load more blood tests.

Thank you Oblomov23

We finally have an app for him this coming Monday at the Pain Clinic for an assessment.
I'm already know they can't cure him & am still coming to terms with that but hoping it's like beginning of some sort of improvement.

I’m in a similar position. Have had chronic pain for years in one ankle and calf with no real diagnosis. I struggle to walk some days. Can’t manage stairs. It’s getting worse. I was diagnosed with Ehler Danlos syndrome last year and while I do believe I have EDS I’m not convinced that’s causing the pain. And now my other ankle/calf has started.

the issue with no diagnosis is no treatment, no hope, no being able to explain to people. I guess I can tell People now well I have EDS but there’s no treatment. And now any issues I have are all put down to EDS with no real thought. 🤷‍♀️

@Manchestermummax3 how did it go?