To think unless you've an autoimmune problem you don't understand?

[HCantThinkOfAUsername]

Willing to be told IABU.
I've SLE and a few other things going on.
I feel so incredibly lonely and my friends and family just seem to be fed up of my constant medical dramas. I HATE being like this.
Dp goes through stages where he is understanding and supportive then back to being fustrated at how much life has changed for us.
Is it just one of these things that you don't understand unless you have?
Anyone know how I can explain it to people?
Tried spoon theory already.

My heart goes out to all of you. I know how hard I have fought on my ds' behalf and I'm exhausted and I'm not the one with the autoimmune disease. I can't imagine how difficult it would be to do the fighting when you are the one who is ill. At least these things are now recognized diseases which here in the USA are official disabilities and for the most part entitle you to accommodations without a battle. I know people like to complain about the US, but our disabled rights are light years ahead of any other place I've been in the world.
On another note....are all of you having your vitamin d checked and supplementing with the mitochondrial supplements...This UMDF website has lots of information and so does this mitoaction.org website as they now believe that there is a mitochondrial disfunction component to many of the autoimmune diseases and certainly at the root of chronic fatigue.

@sofia I will check those out thank you. Sorry your ds has autoimmune issues, he's lucky having you as a parent looking out for him

Sofia my heart goes out to you. My daughter has been unwell on and off for 22 years. She has recently been diagnosed with MCAS (mast cell activation syndrome) it has been hard watching her suffer. I recently went with her to an appt (she is 34) and she said it was quite like old times going to a doctor with her mother! I've found handling my children's illnesses harder than my own, by far.

RedAnnie My friend has Sjorgens and her Mum has Lupus (closely related I know). They both go to the Lupus clinic at St Thomas' Hospital in London where they are very good. Could you get there?

Could you get your otherwise useless GP to refer you? I think under the NHS you are allowed a referral. I feel once you get under a good consultant for one of your conditions you may get passed on to a good team for the rest. My DH also sees a consultant rheumatologist there who is excellent but specialises in his rare disease.

Absolutely.

ME, fibro, endometriosis and Hashimotos here.

I don't know how I'm upright. Ex DP didn't get it, I got eyerolled at a lot. Current DP has ME/Fibro and it's life changing and wonderful to not have to explain myself, to not feel like I'm letting the side down. My confidence has taken a massive hit but I'm trying to claw it back, despite being unable to participate in much of 'normal' life. Everything has changed, these conditions all seemed to hit at once when I was late twenties. I feel old before my time for sure.

I've adapted but people don't get it. My good friends try, I appreciate that, but even my own mother told me I should just 'try harder'. I've stepped away from a lot of people, it's easier to quietly get on with what I can!

Autoimmune conditions never travel alone, I've heard that from a few medical professionals, so my main focus is to care for my body and stave off anything else!

Adara Your neck nerve problem, could it be Cervical Spondylosis? I have that and it causes nerve pain down my arms, back, in my jaw etc.

RedAnnie for my conditions and my DH's there are really useful Facebook Groups where people recommend specialists to each other. I'm sure there will be one for Sjorgens even if it's a subsection on the Lupus one. There must be someone good in the NE!

I dont have a condition, but my boss does and my heart breaks for him - the amount he just tries is staggering to me and im fully aware that him getting to the office is a battle ten times worse than a person with no struggles.

The horrible part has been waiting on doctors, consultants, tests, physios - kafka couldnt have done better with the kinds of systems hes had to negotiate.

Despite this, he is the most empathatic person, treated me with kindness through bereavement and stress - hes been a brilliant boss.

So i dont mind in the least when he vents, i wouldnt dream of eye rolling, and i hope that anyone i meet in work i could help support any way i could.

So while i dont understand, not truly, i hope i do enough to not make it unnecessarily tougher

I have put up with autoimmune issues all of my life. I have a nice little collection .

I do get fed up with well wishers' 'helpful' comments and stupid suggestions for cures - we've all had these!

I am grateful to fellow MNers' comments which have cheered me enormously since I joined. Sometimes there is nothing that can be done to help the condition, but kind words and knowing I am not alone help me a lot.

for us all!

I agree too, OP - at least I think you have to have experienced some kind of chronic illness to understand.

I've had autoimmune underactive thyroid for years and was quite lucky that it didn't affect me as much as many people. It was picked up early and the levothyroxine seemed to do the trick for a while.

The last couple of years have been totally shit, though, as I've added in painful bladder syndrome / interstitial cystitis - which has been agonizing at times - and now have 'suspected' Sjogren's syndrome, though don't even have a diagnosis. My dentist, GP and ophthalmologist are convinced, but bloods don't show anything and I can't get the lip biopsy (other official diagnosis method) done as apparently ' we don't really do that here'.

It's all a particular nightmare because drugs that have helped with the PBS / IC symptoms - like low-dose amitriptyline at night time - are horribly drying so make the Sjogren's type symptoms worse, and the medication I'm on for my dryness (pilocarpine) can worsen urinary frequency / urgency.

I haven't told lots of people and that has made me more isolated, I think. DH has been great but doesn't really understand what it's like. My dad's partner has been very supportive but then she has RA. I have a relative who is very into 'natural' remedies and have had to bite my tongue a few times at her suggestions and constant implication that I should be gluten free, despite having no symptoms of coeliac and a negative blood test.

DH has told my ILs about what's going on and they express sympathy via him, but then never make any reference to it to me, so I don't feel I can really talk much to them about it. To be fair it has been one bloody thing after another - 2 years before this all started I had a disc prolapse too, and still have a few back problems - and I guess they are impatient that there's always something wrong with me.

redannie, isn't one of the UK's big Sjogren's specialists up in Newcastle?

So one thing I said grated me when I first replied to this was how my friends with babies seem to think they have the monopoly on tired. Aaaaaaaand what do you know, on a thread elsewhere somewhere has just made this comment:

"People who don't have kids often dont understand the dog tiredness that comes with it"

Ha!

People can be so annoying. I really hate it when they say of Graves' disease, 'oh you're lucky to have the one that makes you thin' when 1. not thin, my weight fluctuated and stopped at a higher point 😕 2. What is lucky about having an incurable destructive disease anyway????

Sorry only now catching up on replies, I lost the thread!

Mama have got referral to specialist at Kings coming up soon, so will float that idea past him and see if is possible, thanks

I have hashimotos and amount of times people say Oh I'm tired too if i say I'm tired and I want to say yes I've had normal tiredness, Ive been a nurse, had children, worked and studied for a degree all at the same time but this is a completely different kind of tiredness,this is overwhelming exhaustion that drags you down and makes me feel awful.
Even now that I get my meds abroad and use NDT I'm a lot better but still get blips as my energy is from a tablet, sometimes I absorb it better than others or it wears off. It's not a natural hormone that kicks in when my body needs a burst of energy.
I've had people say oh just slow down/take your time or don't do everything in one day etc as if life and jobs and looking after someone works like that! So no not even doctors get it!

forgot to say a huge Thank you mumsnet for actually having a separate autoimmune area where people can post specifically for the very often misdiagnosed misunderstood and mistreated Autoimmune conditions!!

Leukocytoclastic vasculitis here....( I also had undiagnosed endometriosis until I had to have hysterectomy aged 44 for fibroids...when they discovered I had wide spread endometriosis toono wonder I'd been in agony each month and also had 2 miscarriages )
However the vasculitis has destroyed my quality of life over the last 16 months, getting so bad in last 2 months that I had painful swollen legs which have now become ulcerated and I've been unable to walk without excruciating pain...I have to do the wound dressings daily
People kept suggesting I had varicose veins, was I diabetic , needed to loose weight, relax wtf
Skin biopsy has now confirmed vasculitis and I'm on heavy dose steroids and waiting to start chemotherapy to knock immune system on its head
I've been off work since mid September and realistically don't think I'm going to be back until the spring ....I had so many plans as dcs had all left home to go to uni and dh and I were going to have some great trips away

I think its best not to tell much about your difficulties if its happening often. Then if there is any serious difficulty, the family members will not take one seriously.

I have crohns (numerous resections)
Colostomy bag
No functioning bowel inside my stomach wall
Gist that weighs over six stone. (Tumour)
They ‘forgot’ I had been on steroids so long so I was in crisis until seen At st marks. Consultant remarked I was lucky I was not dead.
Am on immunotherapy with chemo drugs every fortnight at the mo. Delayed this week and next due to me having cellulitis- am on super antibiotics so asleep all the time :/
Find life and possible death sentence really hard at the mo as no one wants to operate on me.

I don't have an autoimmune disease but I hope that I have an understanding approach. I don't profess to understand completely though.

I have an 11 year old dd with an autoimmune condition and 3 members of my extended family have MS. I remember my dm describing autoimmune disease as 'unglamorous' and 'dreary'. I think she meant that you don't hear stories of people bravely 'battling' these diseases and she felt that the language used around it is very different to the language used to describe some other diseases. I am sorry to all those suffering, I for one do try and understand.

@wannabestressfree Hope you feel much better soon.

How is every one?

My rheumatologist increased my disease modifying chemo drugs so I’ve felt a bit queasy for a few weeks but that’s easing.

It’s hard trying to do everything normal and go up a gear for Christmas isn’t it?

I have a host of them
Vitiligo - fine, only on one hand
Cholinergic urticaria - annoying, itchy, had for 20 years
Hidradenitis supprativa- stage 1, had surgery in one armpit
Autoimmune neutropenia - I inject GCSF to increase my neutrophils which has shit side effects

Even a doctor said "it can't be autoimmune neutropenia, that's a children's thing, you must have heard wrong"
My haematologist was lovely and said "she's right, it is, and yes she is the only patient I have with it"