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?

Unfortunately I am. I've even been discharged from rheumatology because they won't do anything.

They're offered me injections of the medicine I had a bad reaction to. But I'm far too scared of triggering another two year bout of vomiting and nausea. So at the moment, it's a stalemate.

The best I can get is a bottle of oramorph from the doctor when I have a particularly bad flare up and codeine on my repeat prescription.

As you can imagine, it's a pretty rotten way to live.

Yes, accepting that this is your life now is so hard. It took me a few years to really come to terms with it.

I’m so sorry you’re going through this op. I have similar symptoms to you but I have seen a rheumatologist since I was a child as I have crmo and arthritis. Honestly, I see my rheumatologist every 6 months and he still tells me he doesn’t know the direct cause of my symptoms despite me having multiple diagnoses. He’s great for helping with pain relief but honestly my entire life it feels like I’ve been going in circles with my drs not knowing what to do. It’s a test here, a scan there, another surgery but nothing ‘fixes’ things permanently. If you have any sort of lifelong condition, I think this is the reality unfortunately. I hope you do get the help you need op as being in constant pain and exhaustion makes you lose a sense of who you are, the sooner you get help to get you back to the person you was before the better

Have they checked for/assessed/thought of polymyalgia rheumatica?

Really sorry to hear this. I’m guessing that you had oral Methotrexate that you reacted to and they offered injections? I think they are not sticking to the NICE guidelines. There are other DMARDs you can try. I’ve just started Sulfasalazine for my psoriatic arthritis which is generally thought of as a bit gentler than Methotrexate.

NICE guidelines are I think that offered 2 DMARDs if you have 3 plus swollen and/or tender joints then onto biologics unless you have Ankylosing Spondylitis involvements and then only need to fail one DMARD. I think definition of “failed DMARD “ is a touch subjective but that you could say you have failed one at this point. Birdbath.org have some good podcasts worth listening to.

OP there are Rheumatologists and Rheumatologist. MRI should help give an idea as to what is going on. If you don’t get anywhere though look at getting a second opinion. I wasn’t diagnosed until seeing second private rheumatologist as my GP refused to refer me on the NHS. I knew pretty much what I had as I used to work along side rheumatology practitioners and had 200 patients with RA I worked with on a research project.

Have you been tested for ceoliac disease / chrohns? Unfort very common to have undiagnosed ceoliac disease and anemia.
Sorry you are unwell.

Really random and may not be anything at all but if you do some research on the MTHFR gene it may give you some clues. It is more widely recognised in the US I believe.

Autoimmune issues are complex and often difficult to diagnose. Did any of the blood tests come back abnormal? If so which?

Yes that's it exactly.

I definitely have more than three swollen and tender joints. It's every joint in my hands, so plenty to be getting on with there. Elbows are bad too. Plus hips are starting to kick off now.

I did have a locum GP get furious with me because I said no one was helping me. But that's the truth, unfortunately.

OP@Stuckinarut123 what are your thyroid levels ?any thyroid antibodies ? Like someone else said,once you have 1 auto immune condition there may be others and thyroid is often missed or downplayed.

I’ve had everything checked
I’m unable to absorb b12 anymore so on injections monthly forever
I’m just so tired of being tired 😢 and in pain

Have you got the actual results? Many things like low vitamin D and iron can make you feel dreadful while still being at the lower end of the normal range. Likewise the uk “normal”
thyroid ranges are a joke. Were any of the autoantibodies positive?

Vitamin D was slightly low so I am on 4000IU and have been for 12 months
Thyroid was normal apparently
Nothing else to note apart from the fact the oral B12 made no difference to blood work so intrinsic factor checked and then it was decided I needed monthly B12 injections for life - they make absolutely no difference to how I feel

The best way I can describe it is like a constantly have a terrible bout of flu
My nose runs, my eyes heart, I have absolutely no energy and everywhere hurts, literally everywhere.

I haven’t had any swelling until recently…picture attached.

OP, you have all my sympathies. I have sero-negative inflammatory arthritis, so like you I had every test under the sun and nothing (aside from vit D) came back abnormal. But I was exhausted and every part of my body hurt, I could hardly stand with the pain in my feet, my knees didn't bend, ibuprofen and paracetamol were no use, and no-one could tell me what was wrong.

I was eventually referred to a brilliant rheumatologist who actually listened to my symptoms. She said that, given my symptoms, it was almost certainly something in the auto-immune/RA family, that I shouldn't get too hung up on whether it was fibromyalgia/RA/ some other form of RA, that the treatment standards were similar for most of that family of diseases and she started me on treatment. She gave me a long acting steroid shot and started me on methotrexate that day. The relief from the steroid shot was almost instant (72 hours later I went for a walk with my husband for the first time in over a year), and by the time the steroids had worn off, the methotrexate had kicked in and started to work. That was 7 years ago. And in all that time NOTHING has ever shown up on my blood tests, and my rheumy still never labels what I have as RA (as I have none of the RA markers) or anything else - I have "some form" of inflammatory arthritis, so I'm treated for it!

I guess the point of my post is that the most important thing is that you get effective treatment, rather than have a name locked down, especially as many autoimmune conditions are so hard to diagnose specifically... So what has your rheumatologist proposed as a treatment plan? Or a plan to get you to a treatment plan? Do they feel able to start you on a treatment based on your previous blood work, MRI, ultrasound, symptoms? If not what are they proposing to do to move you along to that point? Can they give you a long acting steroid to alleviate the pain in the meantime? Most RA meds take about 6-12 weeks to work, and it can be trial and error to find the right one (even with a specific diagnosis).

Rheumatology diagnosis is like looking for one specific needle in a haystack with hundreds of needles when you don’t know exactly which needle you are looking for, it may not be in the haystack, and it may be two or three specific needles rather than one. Or it may not actually be a haystack at all.

@TheHawkisHowling if you aren’t a member I would think about joining the Psoriatic Arthritis support UK Facebook group and ask for advice. I think you are entitled to try a second DMARD at this point and it is worth considering.

I’ve done 3 weeks on Sulfasalazine and Etoricoxib (think that is how you spell it) and am pleasantly surprised as I think the combination is helping my foot stopping burning and I am a little less stiff in the morning. Early days yet as takes up to 12 weeks but so far so good and no side effects.

It is unfortunately trial and error as to what works and doesn’t but probably worth another go at this point ?

No one can wave a magic wand unfortunately. Give it time and hopefully there will be more investigations going forward.

I suffer from daily pain, on strong painkillers. Osteoarthritis. So I do get it. Life is seriously shit in these types of situations.

@Thehawkishowling can I second this advice from @seaitoverthere ? It is truly shocking for a rheumatologist to shrug their shoulders and leave you in pain just because you have had a bad reaction to MTX - many people can't tolerate it as it can be a v hard drug on the system. It worked for me for approx 18 months (first six months on tablets then on injections), and then I just couldn't tolerate it any more - even the thought of injecting it was enough to make me throw up! Sulfasalazine and hydroxychloroquine were then offered to me as options, but I'm allergic to sulphate, so neither of those were possible. So I was moved to a biologic which then worked great for about 4 years before failing, and now I'm on a Jak inhibitor. There are just so many treatment options available now. I know the NHS likes to prescribe MTX as it is cheap and can be v effective. It makes me so that anyone would be left without treatment because they can't tolerate the side effects of one of the drugs.

https://www.birdbath.org.uk/psoriatic-arthritis here are the podcasts for psoriatic arthritis and there is one on medication.

Have you had covid at any point in the last few years? It would be very unlikely you have not been exposed. Look at things called long covid, POTs and MCAS and see if they fit at all.

I felt the same earlier this year. Referred to Rheumatology. My given consultant has an excellent name and decided grief was my issue. However did give me Hydroxychloroquine as well as referring to pain management. The hydroxychloroquine seems to have kicked in now and I can feel a difference. She also diagnosed me with hypermobility which sort of made me meh! Next appointment in a couple of months so hopefully there will be improvement and she did confirm my fibromyalgia from 14 years ago.

I’m 5 years on from you and not much further in many respects. Have you been given doses of steroids as autoimmune conditions should improve with a long dose of steroid tablets or a shot? You can be seronegative, like me. And so nothing shows in blood test

I changed jobs to WFH as I was off sick for a year from an in person job. It has helped. I have also found walking briskly when I can for 30mins a day helps, meditation, and a diet of whole foods. I need go back to gluten free which did help. However, when I am really ill like now everything slips.

i feel robbed of being a good mother to my kids and of a career. I am trying to live with the pain as best I can but it is v v hard. I found hydroxychloroquine worked after 6-8 months and I could get off the sofa. I reacted badly to MTX tablets and next stage is injections but I’m not keen.

I too want a diagnosis - lupus has been mentioned a lot but rheumatologist says NICE guidelines says to not diagnose but treat the symptoms as the treatments are similar.

@user1471524772 @Seaitoverthere

Thanks, both.

Yes it's definitely not alright. I'm not even under their care anymore so I have to be referred all over again.

The last time I saw someone - over two years ago now - was very firm that if I wouldn't try the injections, I'd get nothing. Maybe I need to contact PALS or something?

They were pretty certain the injections would be a magical cure. But no way will I ever go near Methotrexate again. I was in A&E after taking the tablet with dehydration from vomiting. I'm still taking anti-sickness tablets to this day, although it's been better. It took two years to get to the point I wasn't throwing up every day. That wasn't the only time I've ended up in A&E from the vomiting.

I'm just another patient to them so they just don't care about potentially triggering another episode that lands me in A&E. But I absolutely point blank REFUSE to try it. I already feel bad enough as it is.

I'm at the point now where standing up or walking around for more than a couple of hours leaves me in excruciating pain. I'm bed bound quite a bit too.

Something needs to be done but I've lost all hope.

I'm so sorry you're in this situation

Have you heard of ehler's danlos syndrome? Are you or where you ever hyper mobile flexible bendy? If so, you probably need to see a Geneticist not a rheumatologist, they are unfortunately often rubbish with EDS.
If you also have food sensitivity/ medication reactions, skin/ stomach issues - then you may have EDS' partner in crime mast cell activation syndrome.

Getting a diagnosis of either of these things if it sounds like you is difficult but not impossible. I'd suggest you contact your local branch of eDS support UK . Ask them who diagnosed them as they will have some know how.

Best of luck, things will get better.