to have expected a rheumatologist to have the answers???

[Stuckinarut123]

I’ve been waiting for months for this appointment
Ive had every blood test under the sun
I’ve developed pernicious anaemia and now need monthly injections
I’m bed bound most days due to exhaustion and crippling pain which nothing is touching
GP referred me as not sure whether Rheumatoid arthritis / ME / Fibromyalgia and neither does the rheumatologist?!

Is it worth going private?

How many times have you seen the rheum, have you had any further tests?

First appointment
I have had every blood test I can possibly have in the world already done over the last year of deterioration
Theyve ordered an MRI on my back but that’s all even though the pain is literally everywhere - although worse in my back
Im bedbound most days and nobody can work out why - or why I’ve suddenly stopped being able to absorb B12 suddenly either 😢

With kindness, I think it’s unusual to expect to have a diagnosis at your first consultation. They’re clearly trying to figure it out so fingers crossed for your back MRI. 🤞🏼

It’s highly unlikely any consultant give a definitive answer at first consultation. They will listen to your history and previous tests results but also order their own tests and even if you went private the same would happen

you need to do the tests they want and wait

I guess I’m just frustrated as have had so many tests over the last year and it’s taken so long for me to get so so unwell that I’ve been referred urgently to a rheumatologist who then didn’t really offer any possible causes even

I'm in very similar circumstances op.

It's frustrating.

It will take time. It took about 6 months from my first consultants appointment, a CT scan, a colonoscopy, several more rounds of blood tests, to get a diagnosis. It was worth the patience though as I feel much, much better now on treatment and with some lifestyle changes.

Have you had an early morning cortisol blood test? (It’s a specialist test and won’t have been done as standard). B12 deficiency is common in people with Addisons / adrenal insufficiency. Have a google.

Welcome to the murky world of autoimmune/endocrine issues. A lot of this isn’t cut and dried and often a case of ruling things out and/or educated guessing based on iterative testing.

I am pleased at least you are finally under a specialist team but sorry, it may be a long road from here to get a diagnosis and find a treatment that works for you.

Hang in there!

Pernicious anaemia is an immune mediated disease we just don't know why some individuals immune system act in a damaging way. Once you have one immune mediated disease you collect others.
I started with vitelligo, the mixed connective tissue disease ( where you get put when you don't fit in the best boxes), the pernicious anaemia and coeliac disease ( they came together) and then fibromyalgia.
My rheumatologist focuses on improving my symptoms. It has taken 20 years to get a really good combination of drugs.

Did the rheumatologist send you off to have an even longer list of blood tests, which no-one else understands or has even heard of?

Rheumatology diagnoses are complicated and take a lot of investigation, most of which is very specialist so your GP can't request them.

No further blood tests
I think I’ve had all you can have
I’m in agony 😢
Nothing at all is touching this pain at all

You might also need to see a neurologist and an endocrinologist

Autoimmune issues take a while to diagnose and sort out and certainly not in one appointment; I think your expectations were too high.

If you get another appointment with the rheumatologist, I would ask for an ultrasound of your hands and feet if possible.

I have seronegative Rheumatoid Arthritis which means it doesn't show up in blood tests. By the time I saw rheumatology I was a bit like you, had had every blood test under the sun but no diagnosis.

The ultrasound showed the "mouse bite" degeneration of the bones and I was started on RA therapy and mostly felt a lot better.

It might not be the answer, but a suggestion.

Hope you do find your answer soon as it is miserable to be living as you are. Keep searching x

OP I'm sorry to hear this. Some conditions are diagnosed/confirmed by excluding other conditions, so please don't think that in the absence of a positive test for something you aren't being taken seriously.

I do get how frustrating it must be though and hope you get some answers and symptom relief.

Some of the potential conditions you mention are notoriously difficult to pin down. Not for nothing are some of them known as "dustbin diagnoses". There is also a wide difference of opinion about them amongst medics.
Also, it's very unfair to expect any medical professional to "have all the answers".

I know I’m being unreasonable
I am just so exhausted and in so much pain I just want someone to know what this is so I can get the help I need 😢

No I will mention this - thanks

The MRI may be key in helping. I had an hour with my rheumatologist for my first appointment and he made no suggestions at all about differential diagnoses. Only once he had the MRI which was lit up like a Christmas tree (his description!) did he talk through what was wrong and what could be done and how long it might take. It took 18mo to get a chance appointment with rheumatology but once they were involved it has been great. I am not pain free but much better than before. Or I will be when I get my hips replaced (bone damage further to inflammation).

I’ve lost my job because of all of this so I guess I was / am just desperate for answers but I do understand things take time.
I feel very guilty that my children have such an unwell mum and I am missing their childhoods either sleeping or awake and riddled with pain

‘

I really feel for you. I was absolutely flipping delighted when my psoriatic arthritis got so bad that I could actually show something to the rheumatologist and get a diagnosis.

Unfortunately they won't offer me any treatment after having a bad reaction to the first thing they tried. So I'm in a similar position of being exhausted and in pain all the time. I've also lost my career over it.

I don't have any answers, but you have all my sympathy and understanding 🌺

I'm sorry that you're in such pain, but doctors are not instant magicians.They need to undertake tests and form diagnoses.

So what does this mean for you?
Surely you can’t just be expected to live in this pain?
Im sorry you’re in the same position as I am 😢

I know it’s not what you want to hear but it does take time and ruling things in and out before a firm diagnosis is made for some people. Unless you’re one of those with classic textbook symptoms, diagnosis is likely to be prolonged and possibly even treatment is trial and error.

I found a lot of benefit from physio, occupational therapy and a psychologist who specialised in chronic pain and chronic diseases. Obviously it wasn’t in isolation but alongside treatment but I was “lucky” to have a severe and obvious disease with textbook symptoms. In the short term though, can they explore some options for you? I tried everything- hypnotherapy, hydrotherapy, reflexology and acupuncture and I’m sure a few more.

It is really tough. There are 2 elements - the physical and the emotional - because becoming unwell is a bitter pill to swallow. Suddenly you have to change your entire life. Make sure you look after yourself.