Im a mum with lupus

[Millieandme]

Hello,

I was diagnosed with systemic lupus erythmetosis after my dd was born, she is now 17 months.

As soon as I stopped breastfeeding I had extreme symtoms like fatigue, sickness, spontaneous allergic reactions, arthritis, list just goes on. I am slowly getting better with medication, but im still finding it hard to handle.

I am also struggling to come to terms with possibily not having any more children because of this, because I love being a mummy more than anything.

if there is anyone else out there who has lupus and you wouldnt mind getting in touch with me, I would really appreciate it.

Much love

Helena

I don't have Lupus, but I have Fibromyalgia. Some of the symptoms are similar.

I have ME. My symptoms are very similar. Fatigue, sickness, joint pain. There's no medication for this. It's horrid.

Yep that's me - fatigue, muscle pain,facial pain, memory and concentration problems, the list is endless

I meant "yep that's me", as in, thats the symptoms I have, not that I am describing ME.
BTW, Lupus is one condition that people with Fibromyalgia are often thought to have

I have a colleague with Lupus who has just had her second baby,despite the meds she is on.I hope this gives you some hopee that it is not impossible xxx

It's classed as a disablilty for tax credit purposes . I'm not sure if it's completely destroyed my career prospects though. I don't mind the joint pain, it's the fatigue I need to fix. I have too much I want to do.

I get flare ups that cna last from a day to 3 months. I can go a good few weeks without one, when people think I'm fine, then it flares up again. They are happening more frequently though and lasting longer

Ohh. Can they change your medication?

Huh, the doctor at the pain clinic told me to stop tkaing the co-codamol. He ahs decided that my "fibro" as he calls it, is caused by migraines, which are caused by the co-codamol. His reasoning being that if I stop taking the co-codamol, I will stop getting flare ups. I ahv ehad a bout 2 migraines in the past 12 months, yet have pain at least 80% of the time, so his theory is all wrong. The GP won't prescribe me anyhting else though as the Pain clinic doctor wrote to him with his "findings"

I have pain (IBS in my ribs apparantly????). I take a gramme of paracetamol, this helps. I know that a mild dose of amytriptyline also works for chronic pain.

I also have fibromyalgia, very painful....I take co-dydromol or just paracetomel, steroids and anti-inflammatorys. My flare ups generally come when AF is due, also when am mid-cycle, so twice a month there are about 5 days when I can hardly do anything, which is so hard, as I want to make the most of every day with Millie.

Am lucky that I see the specialists in London, am sure that makes a difference. The worst part is the exhaustion, and I sometimes just sickness which is constant for about 24 hours which is very hard as I need help with Millie on those days.

I have tried acupunture, and I do think it helps, but is £25 a seesion, and cant have for a few weeks as car tax, MOT and insurance due, plus is DH birthday soon. Am thinking of trying a faith healer, dont know if anyone else believes in that, but am getting desperate so will try ANYTHING!!! xxx

I also have fibromyalgia, very painful....I take co-dydromol or just paracetomel, steroids and anti-inflammatorys. My flare ups generally come when AF is due, also when am mid-cycle, so twice a month there are about 5 days when I can hardly do anything, which is so hard, as I want to make the most of every day with Millie.

Am lucky that I see the specialists in London, am sure that makes a difference. The worst part is the exhaustion, and I sometimes just sickness which is constant for about 24 hours which is very hard as I need help with Millie on those days.

I have tried acupunture, and I do think it helps, but is £25 a seesion, and cant have for a few weeks as car tax, MOT and insurance due, plus is DH birthday soon. Am thinking of trying a faith healer, dont know if anyone else believes in that, but am getting desperate so will try ANYTHING!!! xxx

Well, you could try a diet change?

Have a look at this paper for clues (and search for more). I am in awe of this dr, who gave my ds a second chance.

link

then this (scroll to lupus)

link2

Thank you nightcat, I think you might have really helped me!

I have had a blood test in the last few years for coeliac and they have always been negative, but, I was diagnosed with coeliac just on symptoms in early childhood and put on a gluten free diet, when I was about 19 I introduced it again.

I have wondered about diet, but as diet with crohns is a it restricted anyway I havent done much about it. But I am going to try this, as I am not sure how conclusive the blood tests are, or what the difference is between coeliac and sensitivity or intolerance, but will do a bit of research, so thank you!

How is your ds now, what happened?

pleasure to be of help, whatever the tests show, there is no harm in trying diet in case it works

My ds had quite serious neurological symptoms (and this dr was THE ONLY ONE who knew that there was a chance with the treatment). The symptoms WENT AWAY with the diet, despite the fact that many other drs told me there was no cure and no treatment, just curl up and die a slow death.

I mean, you can have gluten antibodies damaging brain, bread can cause brain damage.. sounds like a heresy, but it can happen. There are numerous autoimmune conditions linked to gluten and apparently, once an autoimmune condition develops, pure celiac symptoms subside, but the condition progreeses nevertheless.

I have since read many scientific papers by this dr and others and there is a different world out there once you open your eyes, some good books too.

If you need more info or more moral support, please visit glutenfreeforum, the people there are very enlightened..

Thank you so much! I started today and am finding it really easy, but then I have done it before so know what to expect.

Am so glad to hear that your ds has improved, I work for a health charity and know all too well how different individual drs can be, and how much difference the right one can make.

I have had memory loss, and I get VERY confused with directions etc, have had a brain scan but no results yet, am assuming if it was bad they would have called me back sooner, but again it does seem to tie in.

I will carry on reading as well.

Thank you again!

Much love

Helena

you will almost certainly improve on the diet, my ds was loosing speech, balance and memory big way - and he is fine now.

Jan de Vries is in Newbury tomorrow and in Sevenoaks in June - in case you want to try him. In one of his books he describes recovery from MS purely through diet (mainly gluten and dairy free).