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?

you are going to have to be a bit more proactive then that, for eg. dont take them saying your thyroid is " normal" as correct.. you need to have had TSH,T4 and T3 done as well as antibodies ..it would be rare for a standard blood test to give you all those and if you haven't i strongly rec a private blood test. In the UK they tend to use a range for "normal" that in the usa would be classed as hypothyroidism and treated accordingly; "normal" also does not mean optimal. Many people with thyroid ( and other auto immune conditions) have poor gut absorption. it can be a lot of detective work to work out whats going on but auto-immune diseases often take a loooong time of having symptoms before a diagnosis is made.

@TheHawkisHowling that is absolutely ridiculous, I’m so sorry you are going through this. I would go back to your GP and ask to be referred again. When back I’d say that you are happy to try a second DMARD and consider that you have failed Methotrexate due to A and E involvement and needing anti sickness tablets. It is Trust dependent I think but people have ended up on the more expensive biologics after failing 2 DMARDs when one of them wasn’t Methotrexate.

If you meet resistance at that point I would go to PALs.

OP I am so sorry to hear that you are in such pain, it is dreadful.

There are lots of you on this thread with, sadly, experience of arthritis and chronic pain.

I have had joint issues, extreme fatigue, swollen joints, etc for a long time, maybe 30 years now.

Nothing ever shows up in blood tests. One of my GPs who is a star took me seriously and referred me to a rheumatologist at our local private hospital (under the NHS).

During the appointment I didn't undress at all, not even my shoes, (a lot of the pain is in my feet and ankles) and the doctor didn't touch me at all.
He said you have a touch of osteoarthritis, take paracetamol. 😳

I was so embarrassed that I didn't go back to the surgery. I am in so much pain and incapacitated by teatime and find it difficult just to sit on a chair. My hands and neck are so uncomfortable.

I have nerve damage to my hip and was prescribed Gabapentin as paracetemol was not touching any of my pain.

Was my appointment typical of how consultants act when considering rheumatic issues? I also have psoriasis to add to the fairy if nations in our house!

If you have arthritis and psoriasis, it's probably psoriatic arthritis like I have. It doesn't show up on any tests.

That sounds like absolutely dreadful treatment. I thought mine was bad, but they did examine me.

I think you might be right. I wonder if I could get referred to a different hospital instead?

The curable app has really helped my chronic pain which was deverstating my life. I do a lot of holistic health as I got nowhere with doctors. I tried everything they offered and nothing helped me at all

Wishing you luck, being in pain daily is absolutely horrendous

@SadCelticBunny i agree with @TheHawkisHowling , with psoriasis it is most likely to be psoriatic arthritis. A lot of people don’t ever have raised inflammatory markers and sometimes it can come on before psoriasis itself shows up and the consultant is supposed to look at family history and to examine all your joints to check for swelling and/or tenderness.

Unfortunately some consultants aren’t great at diagnosing it.

Yes I think you can ask for that. If you join the Facebook group you could ask to get the low down about hospitals in your area. I was very lucky amd got a private appointment with a great consultant in Bath for a second opinion and then got put onto the NHS after my GP refused to refer me on the NHS initially.

This is what I thought of too. It sounds exactly what my mother in law has, and it took them ages to diagnose it too, by process of elimination really.

@thehawkishowling I would definitely start the process to get referred again, and ideally get a referral to a different rheumatologist - someone who actually listens to your concerns. Because it absolutely is NOT normal to be that ill on MTX, and given your severe reaction it is perfectly reasonable to not want to try the injections and to argue that you have "failed" one dmard.

From my own personal perspective, the injections were much better than the tablets, but they are no magical cure for the nausea. Even my first few weeks of injections I was queasy - which was an improvement on the day long vomiting with the tablets!! - but over time it got worse and worse. Given you've already built up such a severe intolerance it seems highly unlikely that the injection would fix the problem with the tablets. And in any case, there are other med options, one of which is bound to suit you better.

But (and I know you know this!) you have a serious disease and one that gets worse and worse without treatment... It's so important that you get onto a treatment that works for you so that you can stop the disease progression on your body. And so you can get your life back again. I've been at the bed bound stage, now I lift weights 3 times a week and walk my little dog for miles - there is hope, I promise. But the first step is finding a good specialist who listens to your concerns, and gets you on a treatment that is right for you (Sending you very unmumsnety hugs cos I know just how hard it is to get started when you are in so much pain and so exhausted and you just don't have the energy for the fight... xx)

Thank you all!
It was mortifying, he was obviously convinced I am faking illness.

He also had a young female student with him, to whom he gave far more attention than to ancient, tottering-in-pain me!!

I was going to say you might have low B12 and folate and you have said your B12 is low. That is what causes your symptoms and is akin to pernicious anaemia. Some people develop neuropathy.

It will be OK with treatment, honestly the improvement is remarkable when you are receiving sufficient B12.

Eat healthily and keep up with regular B12, some people have injections if it is very bad. I take B12 and folic acid orally and my levels are now normal but I will keep it up, they are water soluble so any excess is excreted. I am so much better, thankfully.

The cause of low B12 cannot always be determined. It happens more often in older people. The important thing is to be diagnosed and treated.

Good luck.

This sounds awful! I have psoriatic arthritis and am physically fine at the minute and have been for years due to treatment from my rheumatologist so this sounds so wrong! I tried methotrexate and sulfasalazine and reacted badly to both so he tried me on Adalimumab which has been a life changer. What have you tried?

Thank you so much. I genuinely got tears in my eyes thinking about being able to exercise again. I used to be so strong and fit. Just five years ago I was able to do complicated arm balances in my advanced yoga class. Now I struggle to hold cutlery.

Yes, I am absolutely exhausted. It feels almost impossible to get help.

It sounds horrendous. You shouldn't have had to be put through that. Were you even asked about your psoriasis?

I've tried literally one tablet of methotrexate. I've been told it's just a coincidence that I got so sick after taking it. It's medical gaslighting at its finest. I know myself and I know my body and I am 100% certain it was the methotrexate.

I can't even describe to you how ill it made me. The idea that my only option between being as ill as I am is to make myself violently sick is just horrifying.

I would so dearly love to take something that would put me back to some kind of normality.

Can you get re referred? There are so many different meds for psoriatic arthritis, I've reacted badly to a couple, and some just haven't worked, but now on my sixth med and it's helping so much. Getting some mobility back, and the fatigue is starting ease off - it's amazing. Don't let anyone say you're not entitled to treatment - it's a progressive disease which needs treating aggressively, it's all in the NICE guidelines if you're in the UK.