[jb1]

Hi all

since being diagnosed with lupus a year ago my fitness as gone really down hill for the one reason that I can't seem to do it anymore. However with the help of wii fitness I thought I might be able to crack it seeing as it is so gentle... mmm not so! It seems I can't go longer than 10 mins without getting really dizzy and feeling faint - this is starting to really bother me as I am putting on weight and feeling so useless that I can't even do a little bit of exercise without everything aching and nearly collapsing - I was wondering if I am feeling like this purely because I am v unfit or is it the lupus - should I just ignore it and try to work through it? Does anyone else feel like that when trying to exercise (its very gentle exercise).... its so frustrating!!

 

[jb1]

PS..

PS... Oops nearly forgot I was going to add this on to my post but forgot - It als o seems that I am swelling around my middle and my lower legs - they feel like exploding sausages by the end of the day and my belly goes up a dress size! I've been to the doc about this and he told me to reduce my salt intake and gave me a pelvic scan which was fine - he didn't seem too bothered at all but I thought it odd to give me a pelvic scan when the bloating is higher up - wierd - anyway does anyone else have this as it is rather unsightly and I was wondering if I should go back to the doc... I've also put on a stone since Christmas which is very odd for me as I have always been a skinny rake before and had real trouble gaining weight - until now:wink2:

 

[x_claire_x]

Hiya, has he done bloods? Are you on any new medication? Sounds like your body is behaving strangely for you... time maybe to push for some answers.
Claire X

 

[nicky00]

Yes , push for answers.

At first when I read your post it reminded me of my experiences of being fit then excercising when unfit all pre lupus diagnosis.

The weight around the middle and the swelling is not your normal 'you'.

All sorts of things happened to my body leading up to an eventual lupus diagnois that I took for granted as strange.

I did swell up , put on weight and became breathless with the slightest activity.

Push for answers espically as your lower legs are swelling.

Nicky

 

[keebler]

What doctor did you see? Was it a gp or a rhumey?

I would think with all your symptoms he would of been concerned.

I received a huge lecture from my cardiologist about my foot swelling. He said I needed to see a specialist right away, don't wait, just go.

I hope you find out answers about your symptoms.

Love,
Lyn

 

[Lily]

Hi,

I think I would be speaking to the Rheumy about this, (I'm assuming it was your GP you went to), make an earlier appt if you haven't got one scheduled for a while. It's not normal for you and it could be the disease, either way you need to be in a better state so you can try and exercise and that's not something that should be ignored.

sending hugs,

love
Lily

 

[Pink Pearl]

Hi,
Are you on prednisone? That, plus some of the other routine type meds for sle can cause the type of gain you describe. It causes changes in the way your body metabolizes starches, sugars and fats. It can slow down the metabolism enough that about 1/2 of what you eat, on a NORMAL diet, to be stored as belly fat.
All this while it increases appetite.

If you are not getting satisfaction from your rheumy, perhaps ask him for a consult with a registered dietitian. In the interim, I would suggest you make a diary of everything you ingest daily - including glasses/cups of plain water or other beverages. That will help the dietitian guide you to a diet where you are able to more effectively use your food. I have found that when I am eating fresh veggies out of my garden, that I feel so much better and able to exercise. In winter, when there is not as much fresh (green) goodies out of the garden, I find I have to watch what I eat so my energy level stays up.

I am NOT saying you are eating wrong, just what I have learned, experienced, and observed in my 20 year journey of (diagnosed) lupus.
Sally

 

[jb1]

Thanks guys for your help - Its a nightmare to try and get in at our docs for an appointment so I'm going to wait until I see my rheumy in July and see what he says about it - in the meantime I'm not going to let it get to me and I will continue to try and exercise when I can (hopefully not faint) and see if that makes any difference to the swelling.

thanks again xx

 

[dixy]

hi

are you on water pills perhaps u might need stronger ones. I too swelled up my feet legs tummy thought my belly button would split and my back was sore and there was cushion of water across my lower back. ended up in A&E with right heart failure. Please do get it checked again. fitness I get breathless just walking. Just cant do what I used to but keep trying. Also Im thinking of taking a meditation class to calm my mind down:rotfl::rotfl::rotfl:
take care
dixy

 

[Pink Pearl]

Another thing I forgot to mention: if you have heart or lung problems with sle, it could easily account for getting faint. Your blood is not getting oxygenated properly and you could get "faint" from too much carbon dioxide and not enough oxygen in your blood. So, another thing to add to the list of things to talk to your rheumy about.
Sally

 

[Douglas]

Before everything fell apart two weeks ago I had exactly your "everything aching and nearly collapsing". I too have kept in reasonable shape, in my case with Aikido. I could demonstrate a technique a few times and then had to sit down. Can't even do the daily stuff I had done for the previous four decades. SLE or out of shape? More likely out of shape because of SLE. All I attempt now is to do what I can. (In the last two weeks that amounts to just about zip.)
I hope you manage to get back to a situation wherein you are a bit happier with your condition.
All the bst.
Douglas+

 

[Clare.T]

Hello jb

I would definitely not wait two whole months before getting this situation checked out. I might have to wait some time to see my own GP, but I would want to see even the one I can't stand asap. Maybe the surgery doesn't offer much option. Not to alarm you, but....

I had a bad attack of SOB the other day which was terrible.

You need that oxygen to maintain muscle and organ including heart strength. For one thing I would feel a fool if I was told I should have come in much earlier

Meanwhile you could try some gentle stretching to keep tone and also reduce worry about doing nothing at all.

All the best
Clare

 

[onetay]

jb1,
I would have to say that it is the lupus as I use to walk for miles a day just for fun so to speak. I am lucky if I can walk a block. I walk a block and I feel like I have concrete shoes and short of breath and yes sometimes dizzy. I was told I was born dizzy though so that one don't count I guess. There will be time (more often than not) that you will not be able to do the things you once did. I have been told to try a water resentance class ( Ok when I get off the floor from laughter). If walking a block makes me feel like the above description what will adding water do to me (knock me out). I do very little unless I am having a good day and then I do what I can without spoiling the good day. I have had to come to terms with the fact that I am not the same person. I have to find a new person to be, I will have to find a way to be happy with the new person. I am not saying that you will have to do this but it might be easier to do some adjustment to what you expect of yourself and go from there. I hope in some small way this has helped you. I also hope that you are doing well and feel better. Oh, yeah the swelling You might have to add a fluid pill to your supply of meds. It does help a little but it does not stop the swelling.