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Discussion Starter · #1 ·
It seems like one of the big pointers for autoimmune disease is weight loss rather than weight gain, but I seem to be gaining. I'm still being assessed by both neurologists and rheumies for a variety of symptoms. I have a strong family history of autoimmune disorders, the classic malar rash, what looks like livedo reticularis, and various other lupus like symptoms. In the past, I was diagnosed with coeliac disease (another autoimmune thing) about 10 years ago, and rather than having weight loss with that, again I gained a lot of weight, which dropped off me again once I was diagnosed and went on the gluten free diet. Now again I am gaining weight fairly rapidly as I go through yet another flare of this mysterious illness. I thought it might be fluid, but went to GP who said it was just wind that was making my belly so much fatter (waist measurement increased 4 inches in a couple of months). My face also feels like it is swelling, particularly after lying down in bed at night, but my ankles aren't swollen. I'm not particularly active due to mobility problems, but do move around as much as possible, and I'm hardly eating much at all due to continual GI problems (dificulty swallowing, feeling full really quickly, nausea, etc). From my much reduced calorie intake I should be losing at least a pound if not two a week, but I'm not losing anything at all. What confuses me is that everything is saying that I should be losing weight, rather than gaining, and thats not the case. Can anyone offer any explanations?
 

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Hi ,

I'm sorry that you are still struggling to get answers to everything that is going on.

Re the weight question, there are a couple of possibilities. If your activity levels are low, and your calorie intake is low, it is quite probably that your metabolism has slowed, so you need fewer calories to get by on. The other possibility is if your body composition is changing, but your weight is remaining stable. Muscle weights more than water, and water more than fat (per cubic centemeter), so if you loose body muscle, and gain fat, you will be centemeters bigger but not kilos heavier. Does that make sense?

The other possibility is water retention. This can cause sudden and extreme weight gain. You should really have symptoms of this though once it gets more than a kilo or two - things like oedema in the ankles, and if you are lying in bed a lot, around the sacrum. Odema in the face and fingers can also be a sign. Having said that I have personally met someone with renal failure who we thought was not at all fluid overloaded - he looked completely normal and had no visible odema. After a new kidney transplant though he lost 15 kilos very quickly - all water weight, and all "hidden odema" - so it can happen.

Is it possible for you to weigh yourself on one of those body composition scales that tells you what percentage of body fat you have? Ideal for a woman is 17-25%. Do you have a dietician (because of the coeliacs maybe?)? I'd discuss your concerns with him/her if possible.

All the best,

X C X
 

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Hi there,

I just wanted to reassure you, you are not alone. I too gain weight when flaring and there is a very clear link between me being unwell and gaining weight and if I go into remission (which I did once a few years back) the weight literally drops off me.

I think weight loss is more common but I have seen certain information saying either weight loss OR weight GAIN.

I'm afraid I can't help with any practical solutions,

Katharine
 

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For me weight gain also correlated with being ill.

There may be an aspect of being over 40 but that I do not think would account for high amount of weight I put on, only perhaps where it was dispersed so to speak:wink2:.

No matter what causes the metabolism to 'slow down' this will make a difference. One is more likely to put on weight.

The other thing in all honesty is that if one really looks at the things one had forgotton they ate in a day those little extras do count up.........I do hear what you are saying about how little you eat. Im pointing the unesscessarily obvious here as it still needs addressing in general.

What you eat and what time you eat also will account for how one looses or puts on weight.
An obvious example would be eating late at night.
I might as well slap that bit of toast onto my stomach and not waste time putting in my mouth:wink2:.

So why the weight gain.

This is my own experience......

When Im ill with lupus I put on weight. I have never put that much weight ( except when pregnant).
I found it difficult almost impossible to loose it.
I also found that I felt bloated all over, I swelled but not around my ankles.
Psychologically this made me feel I was literally balooning up.

Moving around was so tireing and cumbersome that the amount of effort just to try living took everything out of me. For the huge amount of effort it perplexed me why I kept piling on the weight.

One has to do a certain amount of aerobic exercise as well as muscle work to loose weight.
So gradually I started walking. Walking was hard but it somehow felt better and tireing in a better way than just moving around.
For example trying to garden was impossible but walking was easier than gardening.
So I pepped up my metabolism. It was five step forward and 3 back.

Gradually as time went on, meds improved the lupus very slowly I came to realise with this illness if one was going to get back in any kind of condition I had to 'make hay whilst the sun shined' where lupus was concerned.
What I mean by that is that I could not afford to be at all complacent.
Should I feel a better day than say yesterday I could not afford to think I will go for a walk tomorrow. Tomorrow may have been i mpossible .

The nature of lupus robs one from the luxury of choices. So I had to try to do the best I could with quite a lot of unpredictability.
I tried to discipline myself to accept the times I really would be doing more harm than good by walking and to realise that I had to push myself out on days that i thought I couldnt and to be wise enough to know the difference and to accept when I couldnt control or understand my body and nothing seemed to go right or work properly and I paid the price of feeling worse.. for all my efforts.

With an illness like lupus for my own experience is that my body gets out of condition. You loose the muscle and tone.
Muscle I believe uses up more energy to maintain its mass.
(I have been told this so I hope Im correct:rolleyes:)

So working on the principle that if I walk and therefore gain more muscle mass/ improve my metabolism,
then whilst at rest I am still burning off calories as my muscles do this to try to maintain themselves. There is a balance in all athelets in training.They have to rest to recover as the muscle breaks down during excercise and repairs itself inbetween ( ok Im sticking my neck out here resourcing what I think I udnerstand from what I have listened too)

Gosh this is a long post....I wish today I could be more concise:p.

With any chronic illness one is likely to loose condition.

I find the mornings still the hardest time despite my improvement in leaps and bounds due to medication.
I find that no matter how bad I feel if I move aroun d that helps even tho Im still really stiff and feel wacked in the mornings mostly.

I hope some of that is helpful. I also know that we are all different.
This disease has taken me down the road of being like an old lady whilst having injury symptoms of an athelete.

Do what you can and be very gentle on yourself for the things you wish you could but cant.
Maybe medication will help you on the road to loosing weight.

:)
 

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Just one more thought - it would be a good idea to check the thyroid. An underactive thyroid can cause weight gain too despite eating very low calorie diet! That big of a change in your waist in such a short period of time would be concerning to anyone - for medical reasons as much as personal reasons.

I would have asked about fibroids or ovarian cysts as that can cause a similar constellation of symptoms but then you said when you get better it can go away as well so that makes it all seem less likely.

For me, I have both lost weight quickly AND gained weight rather quickly in the last several years. I've also had the bloated sensations and your other GI complaints. For me, I tend to think the gain is due to inactivity and muscle mass loss combined with fat gain due to continuing to eat more than I needed to...
 

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:)Hi there, this lupus stuff sure is a complicated thing, isn't it? I usually have no appetite at all, but still find little
things to eat, enough to make a meal, I guess. This will go on for months and months, and then all of a sudden my
body has decided it is starving for food, and all I want to do is eat anything and everything. What meds are you on, I don't believe that you said. The reason I ask, is that I
really think that our meds have a lot to do with it also.
I hope that you get some help and keep posting.:rolleyes::wink2:
 

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Discussion Starter · #7 ·
My update

Thanks for all your input. Just to add a few more things:
Re: diet. I think I am doing all the right things here. I don't eat late at night, have small meals, etc. I have counted calories the last few days and haven't had more than 1600 cal a day, and that would be average at the moment. I'm not particularly active, but do use an exercise bike a little and move about as much as I can. I haven't been active for two years or more, but the weight gain has really only happened in a big way in the last few months. Before that I was fairly steady.
I did wonder about fluid retention, but my GP pooh poohed that idea. I don't have swollen ankles, but my belly has got really fat (4 inches waistline gain in a couple of months), my face seems fatter (GP said not) and I have virtually lost all facial creases. I used to have quite deep creases around my mouth, and now there are none. This is particularly bad in the morning when I wake up, and what I think is swelling almost seems to block my sinuses and make it a bit difficult to breath until I sit up. My fingers seem fatter particularly in the mornings with not being able to move my ring at all. My GP also doesn't see the need to do repeated blood tests, even though I'd like him to check kidney function as on several occasions I have had protein in my urine. My urine varies from fairly strong to very very weak. If I have dipstick done on weak urine it doesn't show anything, but on average strength it has definite protein. I pass around 3.5 litres a day, so I suspect that on balance I could be passing quite a bit of protein a day if I had a 24 hour urine done, which again, GP doesn't see the need to do.
Re: drugs. I am currently on meds for neurological symptoms (undiagnosed). I take baclofen 80 mg a day, paracetamol and codeine and ibuprofen for pain, and diazepam when muscle spasms get too much. I also take metoclopramide (I think it is the same as reglan) for nausea and stomach problems (but haven't seen a gastro specialist since diagnosed with coeliac nearly 10 years ago)
My symptoms aren't new. This has all been going on, and increasing for 3 years now, with what I now realise have been shorter episodes in the past for many many years. I once had a positive anti-cardiolipin antibody test, but when repeated by GP here it was normal. My last ANA was 1:40 nucleolar speckled. Anti DsDNA neg, and lupus anticoag neg. Complement normal, but at the bottom end of the range. None of these tests have been repeated in the last 18 months (again GP doesn't see the need). I have now been re-referred to a rheumie and will prob see him in September. He is a generalist though and not a lupus specialist. I am also waiting for another neuro opinion, and to get a suprapubic catheter put in (currently have indwelling cath because of neurogenic bladder, and too many infections when doing intermittent cathing up to 8 times a day).
 

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Thank God you're getting into a rheumy in the next couple of months! Your GP does not sound like the best considering the protein in the urine findings and not following up on that. Is there any way you can switch GPs or go to another one for a second opinion?

Given the additional information, I would suggest you try going off the Advil if at all possible. That drug is very hard on your kidneys, and can cause fluid retention and even protein in the urine when taken long term. All NSAID's can cause that actually... I had to go off all NSAID's as it was causing this problem for me and my kidney functioning improved at least a little when I went off them.

Advil is also the least recommended NSAID for lupus patients by most doctors; so if you do have lupus it wouldn't be advised that you take it in part due to it's kidney affects and also due a a very slightly increased risk of lupus patients getting aseptic meningitis from it. (very very small risk though...)

Good luck with everything and I hope you keep us updated!
 

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I did wonder about fluid retention, but my GP pooh poohed that idea. I don't have swollen ankles, but my belly has got really fat (4 inches waistline gain in a couple of months), my face seems fatter (GP said not) and I have virtually lost all facial creases. This is particularly bad in the morning when I wake up, and what I think is swelling a My fingers seem fatter particularly in the mornings
Hi there again

I have taken your paragraph and deleted that which never appllied to me.
Other than the deletions I would say your symptoms were the same as mine.
I may have had a few extra things you have not mentioned as well.

My eyes I remember being really puffy as well as the area either side of my nose spreading out in an upside fan like shape over each facial cheek.

It really was perplexing. As I became better the swelling significantly disappeared.

Nicky
 

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I agree with Maia, you should have your thyroid checked.
It causes weight gain , puffiness of the face,loss of facial expression etc. I had severe hypothyroidism & I put on almost 5 stones in weight & was eating less !
I felt very ill & it took about 3 years to sort it out.
Hope you get it sorted

love
Angied
 
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