New to this site: Hi all. This is my first time on... - LUPUS UK

LUPUS UK
26,410 members β€’ 22,306 posts

New to this site

Tia666
Tia666
β€’12 Replies

Hi all.

This is my first time on a forum. I have been diagnosed with lupus and rheumatoid arhritus I also have a mechanical mitral valve and on going heart condition.

I was wondering if anyone else has a rheumatologist who is flippant and has no understanding of the effects of lupus or how it makes you feel !!!!!!! Mine described my symptoms today as feeling under the weather!!!!! X

12 Replies
oldest β€’ newest

Hi and welcome. I hope your Rheumy wasn't being serious, who are you with, is s/he a specialist in CTD and lupus and what hospital are you going to? Sorry didn't mean to interrogate you. If you're not happy with your treatment/Rheumy it may be an idea to ask for a referral to a different Rheumy. Can't promise anything but it's your right to ask. Someone here will be more able to advise you on how to go about it.

I don't have Lupus but I do have its little sister Sjogren's syndrome. In fact I've literally just got back from hospital having had a lip biopsy. I'm seronegative so my diagnosis is all biopsies including the skin and visual evidence and symptoms.

I finally got lucky after years of going round in circles and have got a really lovely Rheumy, maxillofacial surgeon and dermatologist.

I really hope that you can find someone who knows what the problems are and can be and certainly more sympathetic than the one you have at the moment.

Good luck and try and stay calm.

Hugs and kisses. OXO

Tia666
Tia666
in reply to Boudica1

Hi Boudicca. Thank you for replying. So relieved to have found this site. Feel as tho I am going crazy at times and feel so isolated. My hospital is Norfolk and Norwich and so far have been made to feel like a paranoid nuisance! So sorry to hear you have had to have a lip biopsy and hope you are feeling OK. Don't want to be intrusive but just wondered what type of symptoms you have? Xx

Boudica1
Boudica1
in reply to Tia666

Dry eyes, nostril's, mouth, throat in fact everything. Fatigue like someone slammed me into a brick wall. Pain in feet, abdomen and chest (emphasima, bronchiectasis & fibrosis). Vasculitis and Jessners lymphocytic Infiltration. Bit of a wreck really.

How about you, hope you aren't suffering to much? Try and keep as calm as you can so as not to make things worse. Hope you aren't having to many flares.

Try and make time for yourself and learn to relax. Have they put you on any meds?

X

hello Tia666

After nearly 3 years on this site, I can tell you that what you describe is extremely common. Our rheumys are perhaps less likely than other medics to dismiss us, but they are certainly not exempt. Being persistent and working out the psychology of our clinicians so that they are able to hear what we are telling them seems to be a skill we all have to learn. Hope you find it useful to share your experiences here x

Tia666
Tia666
in reply to whisperit

Thanks for reply. I'm just having a really low day today. Does anyone else get upset with others looking at you and assuming just cos you look OK it means you are? While feeling that you are physically and mentally dying inside??

Have got ESA assesment tomorrow and PIP on Thursday which is a stress I can't deal with at moment. Any tips on how to get through? From what I've heard the assessors are the traffic wardens of the NHS. X

whisperit
whisperit
in reply to Tia666

There are lots of posts about gouing through the PIP process on this and (especially the Fibromyalgia UK site). Here's my post about it - not a good experience, but I was lucky enough to get the result I needed. healthunlocked.com/lupusuk/...

Tia666
Tia666
in reply to whisperit

Thank you. Will have a read before tomorrow. Sooooo happy to have found this site x

DJK99
DJK99
in reply to Tia666

Hey Tia I just read this post of yours from a month back - and just read this response from you - I totally get what you are saying. Ive had a few good er bad days recently due to this ie non clinician people just not getting it - but I guess good for them, as if they had it theyd certainly know about it. That make sense? :). And as for your Rheumy... oh dear. That just awful. I had the Registrar at my hospital state in a letter after meeting me, prior to my Consultant Rheumy diagnosing me, that my symptoms were nebulous. I cried after that... and sent a very clear, numbered and detailed explanation of my nebulous symptoms for when I met the Consultant the next time. My Rheumy now is jsut wonderful. I think he is almost pacifying me sometimes, but hey. I have to say so many docs are very bright in deed I guess, its not an easy subject afterall, but with that comes a lack of empathy often - brain over heart! My surgeon recently was beyond awful. The power these people have, and the affect they have on us is surely not right... I think a nurse shoudl also be in the room often, to translate what the docs are saying into a more palatable version. Its just so further damaging to our physical and mental health. Im flaring (as ever) more currently due to having to sort through letters from various clinicians for Occupational Health as going through all that. Its very difficult at times eh?! Hope you have been feeling a little better since you wrote this post. D x

I always hope he will get it .he is such a smug bastard.it would be brill if he went down with s l e I asked if I was going double jointed & he just blanked me .drs letter said showed signs of hypomobility ?????? Double jointed maybe xx

Hidden
Hidden

Dr Chetan Mukhtyar is very good and patient centred.

nnuh.nhs.uk/people/chetan-m...

Tia666
Tia666
in reply to Hidden

Hi thanks for that but changed from Dr ******* as found him a bit unapproachable to Dr ***** who is a million times worse!! 😨 Grass is not always greener xx

Sjanec
Sjanec
in reply to Hidden

I am under dr Mukhtyar for over 5 years and he has been brilliant with my many conditions

You may also like...