Rant ...

gt43

Hi

I'm so sorry to moan as the forum is a real eye-opener and there are so many people with worse problems, but I've been biting back tears all afternoon having rung the GP surgery this to see if my blood results were back, only to be told cheerily, "Yes they're back - and the doctor is happy with your results, everything's fine!" ..... well, everything is NOT blooming fine!!! It's the equivalent of being told how well you look when you feel awful - the last time this happened, the doctor tried to round up the conversation by saying, "well anyway - I can reassure you that you don't have anything very wrong because it's not showing in your blood tests, and whatever it is will soon resolve itself" ... and I had to reply that, far from being reassured, it feels absolutely terrifying to have all this stuff going on since last September at least, and to be so easily dismissed.

Apparently nothing in my blood tests shows a hint of how ill I feel - my right eye is bright red and sore with episcleritis (diagnosis from eye hospital), I'm tired beyond belief, regularly sleep on the sofa, having failed to reach bed before falling asleep, and am seriously struggling with full time work. Meanwhile, when I get up my feet are so stiff and painful it feels like I'm on rockers and my hands are bright red and puffy, terrible pins & needles in feet & hands ....... etc. Oh and odd bony lumps popping up on hands and feet. It certainly looks and feels like some sort of arthritis to me (and I do have a tentative dx of psoriatic arthritis), but I do wonder when I apparently have no inflammation, no markers, nothing ... how can that be? Is it normal to have nothing showing at all?

On the plus side, the Naproxen is an enormous help, and I feel hugely brighter when I take it. I haven't been taking the full dose, though, as Omeprazole gives me a stomach ache

My mum's going to be 90 tomorrow, and I'm so ashamed I haven't got any pressies or birthday treats yet ... just haven't made it to the shops.

Carole

fibrogal1

Have you been seen for Fibromyalgia?Sounds quite like me tbh! Maz x

LignumVitae

Hi Carole,

Rant away, it's what we are here for and it sounds like you need it. We obviously can't offer you a diagnosis as we aren't medics but we can offer you support and our understanding.

Arthritis comes in many forms and can be diagnosed in many ways. My bloods have never shown up much beyond a bit of inflammation, that said, my joints have shown up plenty.

Have you been seen by a rheumatologist? GPs cannot really diagnose, they tend to treat lots of things so know little about lots of things rather than lots about a few things. If you haven't then I suggest you request a referral to a rheumy. It often helps to keep a diary of your symptoms with pictures and notes on what makes things better or worse.

Being poorly puts all of life out of kilter, the harder getting up and going to work is, the worse you feel, it's like being in a downward spiral and you definitely sound like you need something to get you back on the level. I hope you get things sorted for tomorrow but please don't punish yourself for struggling, it won't make you any better.

Big hugs,
LV xx

toady

Hi, sorry you're having such a frustrating time. I can see the drs think they are being reassuring that there is nothing too awful going on with your bloods, but as my consultant told me early on, they see people with great bloods who feel awful & vice versa. But they should go as much (if not more) by your symptoms as your bloods, they don't give the whole picture by far. They might not have found anything but saying it should soon resolve itself (on that past occasion) sounds a funny thing to say - when a prognosis of any sort seems to be the last thing you can get off any rheumy usually! They like to sit on the fence & wait & see in my experience.

Sorry you're so tired for your Mum's birthday, I understand that horrible frustration so well, when you can't scrape up the energy for even the minimum 'special occasion' stuff. Was sat here internet shopping at xmas and fuming cause I just wanted to be out shopping in the proper shops myself! That's how it goes though eh. Hope you can have some sort of a day for your Mum that's manageable for you, mine always preferred seeing us & having a hug & laugh & a kitkat, & wasn't worried about pressies anyway, but I know how you feel. Happy 90th to her & hope you feel better soon.

/edit, I have a friend with psoriatic arthritis and their bloods never show anything either, when mine have been through the ceiling their esr etc is always normal, though that's just 1 personal example.

frogmorton

Oh You poor poor thing!

You sound like me!!

Heaven only knows what is wrong - the bloods are normal :roll:

I still have no real diagnosis, but luckily am believed by the rhuematologist and am being treated. Please try to get referred to a rheumatologist if you can.

Carole - anything will 'do' for your Mum - she loves you I am sure. A card and your love will be all she needs.

Love and huge ((()))

toni xxx

wynnie

also sounds like fybromyalgia to me ,my friend has it and because her bloods kept coming back normal it took a very long time to diagnose ,she could sleep for britian and is always in a lot of pain ,hope this helps ,if your no better soon ask to be sent to a rheumatologist ,and if they refuse phone every day and ask for a doctors appointment say you are so sore and tired you cant make it to the surgery ,bet you wont be long in getting a refferal ,keep your chin up x

dreamdaisy

I too have lovely bloods (thsnaks to the meds) and I look OK (thanks to what I don't know but I do). I can't move well, I'm in constant pain, tiredness is a factor but I have lovely bloods. Woo-bl**dy-hoo. :roll: It's not easy, is it? DD

dreamdaisy

Cracking typo there, Gromit!

Don't let the 'professionals' cower you into thinking that it's all in your head. It isn't, an auto-immune arthritis is a complex beast, it doesn't play by the rules and neither should you. I hope you are keeping a record of what is going on with you viz pain, tiredness, aches and hurts, any restrictions on what you can do etc as this will help to give the doctors a better all-round picture of what is happening with you. DD

wynnie

glad the bloods are lovely lol,i hate when folk say oh you have a healthy face !!!,eh its not my face thats got the problems its the joints in my hands feet, shoulders ,keep pushing on and im sure you will find you have fybromyalgia ,you will be hoping you dont have it but its somewhere to start and rule out ,hope you find out soon x

gt43

Thanks so much, everyone! Your comments are incredibly helpful and comforting - it's so so good to know that there are people who understand!!! I know why the docs are confused (although not why so many have been impatient and dismissive, when, if they look at the notes, I'm clearly not the sort to bother them every couple of weeks ...) I'm on medication for overactive thyroid and have had the eye problems too, so some of this could potentially be down to a drug reaction (a kind of fake lupus thing) or even the thyroid itself. But the thyroid is supposedly under control, or was before Christmas, and I don't think reducing the drugs has changed anything so far. From my point of view, a lot of this is stuff that I've had for years, just much worse now (I didn't want to bother the GP back then, either, and just got on with it). So maybe it would have happened anyway.

I did wonder about fibromyalgia - I'm waiting on an NHS appointment, but stumped up to see a rheumatologist privately, and what it says in his letter is "inflammatory arthropathy ?psoriatic". However he did note the fact that I also seem to have muscle pain, and he didn't have any of the blood results, so that diagnosis was just on his clinical findings. I think neither of us was completely happy with the psoriatic bit, as while I've certainly had skin changes since this started, I'm not convinced I've had proper psoriasis (so far).

Very interesting, though, to read about at least one other person who'd had psoriatic arthritis triggered or made worse by low thyroid - due to a cock up with my endo appointments last year, I was on too much med. for toooo long - and ended up low, right before this happened!

Meanwhile, getting the Naproxen has been a minor triumph - I can cope with quite a bit of pain, having had excruciating neck pain and eye migraine (unexplained, but I thought at the time it was some kind of rheumatic thing) since my twenties, but I'm finding the exhaustion with this the worst to cope with - Naproxen does seem to help with the tiredness.

What's "inflammatory arthropathy"? Is different to arthritis ?

PS - fortunately mum's neices sent a surprise bouquet, and lots of phone calls, so she had a lovely weekend and I don't think she felt forgotten!

toady

Hi, sorry you're still having a vague mix of symptoms and diagnoses.. 'arthropathy' just means joint disease, so I can only suppose the consultant felt that was as specific as he could be given your symptoms, ie some sort of inflammatory joint disease. Seems a pity he didn't have your bloods to refer to but then again it doesn't seem they would have told him anything too helpful. Will you see them again? When is your NHS appt likely to be?

All the best, glad you made it through your Mum's birthday weekend and it was ok for her.

gt43

I have an NHS appointment coming up in May, with the same guy. He did ask for some tests to be done via the GP, but reception there have cocked up the results, so I have two sheets showing the FBC for the same date, with totally different figures on each, while the ANA, RF, CCP & ANCA results aren't on there at all :roll:

Meanwhile, saw the endocrinologist today - he was fuming that I'd dared to see a rheumy privately (but I was desperate - what was I supposed to do?!) - perhaps feeling vulnerable as he's admitted his use of this particular thyroid drug is outside the Guidelines - on the other hand I do have the highest antibody titre of any patient he's ever seen (nice to feel special, eh?) and I did say I wanted to avoid being irradiated at all costs ... ... so all my fault then, and I allowed myself to be bullied into seeing the surgeon with a view to thyroidectomy.

And then .................... when I got to work, in need of comfort, the bloomin' chocolate machine was out of order - MAJOR CRISIS !!!!! :shock:

dreamdaisy

I don't have what I would consider 'proper' psoriasis either but dermatology were happy that what I presented to them was just that. I have two permanent patches on the inside of my ankles and one small patch on the outside of my left ankle joint. My mum gave me a Christmas present she didn't want, a Manuka honey foot and heel cream and that has nearly cleared it up, better than the doc's steroid-based ointments have ever done. I can feel yet another arthritic expense coming on. DD