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Autoimmune disease - anyone else out there with this?

(16 Posts)
captainproton Wed 12-Nov-14 09:28:19

Hi, is there a thread for sufferers of autoimmune problems? I have a diagnosis of undifferentiated autoimmune disease (basically my immune system is rubbish but they don't know why). I have recurring chest infections and persistantly elevated liver function test results.

I am mostly knackered all the time, find it difficult to walk upstairs go anywhere when I have chest infections, sleep is always broken due to coughing. I quit my job in October (i just couldnt keep breathing in all the germs in the office/commute) and I now have my 2 cherubs (aged 1 and 2 ) to keep me company.

However no one in my life really gets it, I struggle practically every day and I am wishing the days away until my kids start school and I hate myself for it.

If I could chat/read about others who go through similar it would help a lot.

Coffeethrowtrampbitch Wed 12-Nov-14 09:39:36

Hi Captain, I also have an auto immune disease, the lining of my brain swells up. I had a brain biopsy in April but it did not test positive for sarcoidosis, but I am receiving steroid treatment which is helping. Unfortunately I have piled on four stone due to steroids so am moving over to immunosuppresants.

I feel pretty wrecked and tired most days, but I have a seven and five year old at school and a three year old in nursery in the afternoons so I get two hours off a day to walk the dog and do housework. I am totally knackered by the evening every day though.

I take my hat off to you managing with such young children. I find the worst thing is that autoimmune conditions are invisible, so you struggle to do most ordinary things, and yet dont get any help because you dont look ill. Please remember you are ill, and you need to make allowances for the way you are just now and give yourself as easy a life as possible. You wont always feel so tired and you learn to conserve your energy for when you need it.

captainproton Wed 12-Nov-14 13:52:14

Thank you Coffee, I only developed symptoms during my second pregnancy and it was sheer hell. I am starting steroids next week and I am worried about weight gain. But I need treatment my life is hell! My DH tries hard to understand but he just doesn't get it.

Coffeethrowtrampbitch Wed 12-Nov-14 18:13:14

Steroids will help and will also help with your energy levels. Weight gain is dependent on the amount you take, I believe a dose of 7.5mg is roughly equivalent to your own levels, so you only gain weight significantly if you are on more than that. I'm now on 20mg but have been on 40 since April and had massive intravenous doses before that so that why I'm so fat blush.

If you have had a pregnant and newborn I don't know how you have coped. It will get better on steroids, just try to hang on until you feel less exhausted. It will get better, but I understand how you feel and you must be desperately tired.
Steroids will help your symptoms and energy levels immeasurably.

Sorry your dh doesn't understand, I think you can only understand it if you have been through it. It may be worth leaving him with both kids for a while if you can, then asking him to imagine doing that all day, every day, and cleaning a house when you can't breathe. Dh had to do everything when I was in hospital and he is definitely more considerate now he knows what I do all the time.

crumblebumblebee Wed 12-Nov-14 19:39:42

Regular name changer here.

I have 3 different autoimmune diseases that have left me with deformed joints, a dysfunctional GI system and scarred eyes with reduced vision. I can't remember not being in pain.

I reached saturation point today at a hospital appointment and broke down when I got home; wondering how long I can go on like this. I'm struggling with work, running a home and looking after my family. sad Sorry, so self-pitying! In real life, I hobble on and smile.

BasketzatDawn Thu 13-Nov-14 02:05:01

I am in the club too. I feel like it's been a battle for years, first for a proper diagnosis, then with the treatments. I feel tired and crap all the time. Aching joints and muscles, sore eyes, breathlessness, and then there's the side effects of treatment. I have several AI conditions - about six or seven - some linked, some not. I've been up tonight with a child who doesn't sleep. Time for me to go to bed now or I'd say something useful.sad smile

crumblebumblebee Thu 13-Nov-14 07:55:10

"and then there's the side effects of treatment."

This is generally the straw that breaks the camel's back for me. I can mostly tolerate my body behaving like an arse because it's not well but when the meds cause problems, I am just infuriated by it all.

I've had counselling before and I found it very helpful. I would return but at £50 a week, it's just not possible right now. The counsellor at my GP surgery was about as useful as a chocolate teapot, so no point trying that avenue again.

captainproton Thu 13-Nov-14 13:27:54

crumblebumblebee - I'm sorry to hear what you are going through. I had to give up working, which also means I don't have childcare anymore. My children are just going to have to get used to being housebound when things are really tough.

Coffeethrowtrampbitch Thankfully DH took 6 months paternity leave with my first so he knows how to look after both children properly (without me worrying about any of them) whilst I sleep in on weekends. He does do a lot but he works and now I am at home I feel like I have to do most of everything. Because I am here looking at it all day and I can't leave it.

BasketzatDawn I hope you feel better today, I know what it's like them not sleeping, I just give up and have them in bed with me when they are like that. DH gets them and goes off to the spare room. I don't have the energy to argue. Plus now they share a room they mostly enjoy being together and it's only when they are sick/teething that they want mummy.

I'm finding it very hard to not let my mind race off with ideas on what I could be doing with my time, and learning to slow down and relax. I hate this shell I am in, I have to come to terms with it. Maybe I should get some counselling.

I am also going to harrass my GP to see if he can let me keep some AB's at home for when the infections start so I don't need to wait to start treatment. But they are so reluctant to prescribe them I feel like I am asking for hard drugs or something.

Then there is the worry my children will have inherited this, as my sister also has AI problems although different to mine so it must be genetic.

LadySybilLikesCake Thu 13-Nov-14 13:32:40

Hi.

Yes I have MS. I didn't put on weight when I was taking steroids but they make you feel so hungry you feel sick really quickly. They work best if you eat a protein rich diet, so fish, meat, eggs, which I'd snack on when I was hungry (keep some cooked chicken in the fridge as you'll wake up at 3am and need to eat). Lots of fruit and veg too. I did get a little spotty, mainly on my back.

I'm sorry you're feeling like shit sad Did they check your Vitamin D levels as supplements can often give you an energy boost.

Lonecatwithkitten Thu 13-Nov-14 14:27:01

I have 4 autoimmune diseases, I had number one at birth so never a time without one.
I take Plaquenil rather than steriods so that I can take big doses of non- steroidals that enable me to work. I self inject B12 for the pernicious anaemia.

Siarie Thu 13-Nov-14 14:30:11

I have one diagnosed autoimmune disease but I likely have more. I'm eagerly awaiting nanotechnology as a cure for the immune system grin. It annoys me that they can only really treat the symptoms at the moment.

merlehaggard Thu 13-Nov-14 16:16:45

I've got myasthenia gravis and was diagnosed at 24 and also diagnosed with rhuematoid arthritis more recently. I'm now 45 and take steroids to control them both.

Kewcumber Thu 13-Nov-14 16:25:57

I self inject B12 for the pernicious anaemia. ooh that would be much easier - how did you persuade your GP to let you?

I'm lucky - 3 auto-immune disorders but one appears to be in remission after aggressive steroid therapy. Other two are unresolvable but easier to deal with B12 injections and annual hospital admissions for iron infusions.

But yes I totally sympathise with the side effects of the steroids. I was was on 75mg of prednisilone after a loading dose of 150mg. I put on about 4 stone and I don;t think I slept for more than 3 hours! SO glad I was one of the 50% they get into remission.

I refuse to have my (relatively mild) arthritis treated with steroids. I have physio about once very 2 years when it gets unbearable and other than that it seems fine.

Kewcumber Thu 13-Nov-14 16:27:26

I feel so incredibly lucky compared to some of you.

Lonecatwithkitten Thu 13-Nov-14 16:52:01

Kew I just asked it may help being a vet and administering multiple deep intramuscular injections a week. I have to do them when other adults are around and as a single parent I do them at work and my head nurse is my responsible adult for that hour.

Coffeethrowtrampbitch Thu 13-Nov-14 22:05:10

Some of you have to put up with so much thanks

Nanotechnology would be fab grin

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