Nice to see this here

[scaryteacher]

Great to see that there is a section for those with auto immune disease; it feels quite lonely having one sometimes.

Gosh sorry, I didn't mean to moan! Please ignore me. I'm just fed up of it all.

Ffs, Lost if you can't moan about it here, where can you moan about it? Let rip if you really need to, even if we can't haven't gone through exactly what you are going through, we can empathise.

Hope everyone is doing ok, I've had an emotionally hard day, a combination of a friend"s mother dying yesterday (my mum died when I was 13), and an old school friend posting a photo of the 16 year old me telling me that she always thought I was lovely and fabulous. So lovely and fabulous that she didn't bother to get in contact with me for nearly 30 years... I have so very many mixed emotions swirling around my head at the moment, it's unreal.

shadow sounds like a tough day. Hope today is better. 💐

Doctors surgery finally called yesterday about the hip X-ray I had almost 2 months ago. The doctor would like to speak to me today! So of course I'm stressing thinking all sorts!!!

Today so far is a so so day been up since 6 and fingers just coming to life, still limping around and walking like 90 year old that'll be at least another hour till that goes!

Hope everyone has a good day today x

2Old my dd has ivig infusion 4 weekly.
Her veins were terrible and she has a portacath now which has been good.

My shoulder has flared up today and is so swollen and painful. I am covering myself with Voltarol, which smells so sexy.... as I can't take painkiller at work.

Carbon if you're only taking ibuprofen can you ask your rheumatologist for diclofenac instead or something stronger?

Currently taken off all RA meds as clinically inflammation free but pain is really bad.
That's awful!

You've made me realise I 'm so lucky as my rheumatologist has the attitude of treat the patient not the bloods. My symptoms and bloods never align!

Hope they see sense and get you back on them

Chishandfips - me too - my bloods are never in line with my symptoms but my rhuematologist treats what he can see and I've been seeing him so long now he knows when I'm in pain!

Hi, various AI conditions in the family but DD has hypermobility (query EDS) and allergies/asthma. Anyone with experience of hypermobility in children?

RA, CFS, recovered from fibromyalgia and asthma, flirted with sjorens (spelling) for a while.
DD 18 has CFS, hypermobility and gluten intolerance.

We are on a special diet to see if that helps.

I. Am. Sick. Of. It!

But yay! A topic.
Thank you HQ.

@PragmaticWench my DD has hypermobility and I also suspect EDS. She does remarkably well though, she only occasionally has pain and she's very fit and active.
I'm seeing Gp later to try and convince them I have a thyroid problem. Not holding out much hope, they've been pretty poor with treating my pernicious anaemia so far.

RA here with signs of pulmonary fibrosis. Had a terrible hip joint for the last 2 weeks whereas normally my pain is limited to my fingers and toes.

nice to see this group, i just stumbled across it by accident!

Anti-NMDA receptor encephalitis is suspected still waiting for immunology to confirm blood test.

Our DD2 is 14 years old and apart from mild learning disability, lax ligaments and a chromosome mutation was a normal happy teen until a month ago. She has been so ill.

Hi I have Sarcoidosis - lungs, lymph, skin, ovaries and I think now joints. Mainly being kept in check with methotrexate and steroids but battling the damage already done.

Also a c-pap user.

fortifiedwithtea messaged you

Ooh I've only just spotted this, thank you HQ!

Under another name I posted a thread (as advised by MN) in Site Stuff, to gauge interest with who would be interested in a Auto immune topic. Lovely MN HQ listened and here we are.

I have Crohn's and there was a thread which sparked this question as it appeared there were quite a few of us dealing with this.

So bloody chuffed it's now a topic

Hi- lupus, hypothyroid and probably fibre for me and type 1 diabetes for my son, both crap to cope with. Would be interested to hear from those with lupus and fibro diagnoses as to how you differentiate which is causing each particular symptom- I have a lot of muscle pain even when my bloods are fairly normal and am told it must be fibro not lupus causing the pain but if I up my steroids the pain goes within 2 days and I thought fibro didn't respond to steroids?? I don't have 'tender points' but there is so much overlap of symptoms I'm finding it hard to know if it is fibro as well as lupus or just lupus that it's the necessarily showing in my blood results all the time.

Livingthegoodlife I have RA too and am also suffering hip pain in addition to the usual places. I had a hip ultrasound but my hip looked healthy so the doctor thinks it's referred from my lower back. I'm not doing too well at the moment with the RA mainly because of a lot of family stuff going on which is no-one's fault but it means I have a lot on my plate. I so miss being able to use that upper gear and used to thrive on a bit of pressure, I used to turn into super-woman. I still can but suffer afterwards. Sorry for the rant!

i have auto immune hepatitis. Take lovely immunosuppressants. People don't tend to understand ai diseases. "Can't believe you have another cold". Well it's either that or need a new liver!

Evening all.

I just have Hashimotos.

I have Perinicious Anaemia, and a side effect means I am suffering with an irritable bladder which the doctors don't know how to treat at the moment, especially as I am 16 weeks pregnant.

Would love to hear from you in you have any tips to solve my bladder issue.

I posted in the original thread that was used to gauge interest in an Auto immune topic under my old username then I outed myself so had to NC!

I have hypothyroidism and awaiting confirmation of what the doctors believe is Crohn's Disease, mind you it's been such a long drawn out process I'm not hopeful of getting answers anytime soon!

My DH and one of our DC also suffers quite badly with psoriasis.

Hello there , Fatbird71. I am also on 'lovely' immunosuppressants for AI liver disease. They are controlling things at present so perhaps i shouldn't dislike them so much. I have AIC which is a rare variant of AIH & PBC overlap. I started a thread on AI liver & bile ducts
disease in the early life of this new section.

Hi, I have mild RA (managed just with ibuprofen), but also something I've not seen mentioned on here - CIDP (chronic inflammatory demyelinating polyradiculoneuropathy).

Its my peripheral nervous system eating itself and I'm treated with IVIg (intravenous immunoglobulins) every 5 weeks. I've got numbness, tingling and pain from my hips down and elbows down, and also perioral numbness). Awful fatigue, loss of reflexes, no proprioception (can't clap my eyes with my eyes shut!), loss of balance - the list goes on!

Nice to hear from others with similar issues.