Adverse reaction to all forms of exercise???

[brave]

So after years of flaring and recovering ,exercise became part of my life ,although i always still struggled and sometimes ended up flaring on and off not really wanting to admit the exercise was the culprit;( after all were told to exercise if we can .Well as things have now been in a downward spiral and progressivley getting worse each day, a gentle walk in fresh air sends me over the edge ,if i swim i cant move for days ,its a joke ,i used to run ,swim ,cycle ,the whole lot ,even spring clean my house .Does any one else suffer adverse affects to exercise ,and of course thats if we are even able to get to the point of wanting too?i keep wanting to exercise but if and when i try ,and were talking extremly gentle exercise ,i end up hardly being able to move ,exhausted ,swollen glands and all other sysmtoms tenfold.Didnt know if this is part of lupus or something else as consultants just look and pass no comment when i mention it.Or they jsut say..........you must pace yourself .I do pace myself constantly ,but when i try to move that little bit further ,it knocks me for six ;( fed up with this crappy disease ,how are we supposed to ever except it?thankyou guys ,im sure there are some of you out there who understand?keep well ,happy new year ,bravex

[Sher78]

I have found the gentlest form is swimming (which I'm planning on starting again very soon). I don't go mad & granted I have 2 keep stopping 2 catch my breath, even though I only do breast stroke & swim on my back & fair enough it takes me forever just 2 do 1 length but I do feel better afterwards, albeit a little achy x

[Purpletop]

Have you checked fibromyalgia? I was looking at the symptoms the other day and one of them is abnormal response to exercise - see fibroaction.org/Pages/What-.... It might not be your case but it might be good to check in any event.

[brave in reply to Purpletop]

yes purple top i have fibro overlap ,it sucks ;(

[janekins]

Hi brave.

I haven't been able to do anything since I had stroke like symptoms in April. I'm having to use crutches to get around and get exhausted just going a short distance. Like you I used to keep quite active. I hate this illness too!!!

Wishing you a very happy new year brave, and hope that 2013 brings better health x

[field]

Hi brave, I am new to this site. I would like to say hello to every one and say how much I appreciate this site, its good to know i am not alone in my plight.

I know exercise is good for you, but Its hard enough trying to do the basic things in life with this illness. I have attempted to exercise on and off, but it knocks me for six, so I don't attempt any more. I suffer with breathlessness as well as chronic fatigue and like you I exercised and was very active before developing lupus. Take it easy don't over do it, listen to your body.

Happy new year.

[marypw]

Yes, that sounds exactly like me - I used to do Pilates but had to stop because I had to spend the next day in bed - just couldn't move and ached everywhere.

I have recently started doing a Functional restoration course at my local hospital. The first day we had to do a minute of exercise on 10 things like exercise bikes, step ups etc. I thought that's easy and everyone else was either older than me or had had hip replacements so I went for it and thought this is fun! Had to spend the next two days in bed - I have now learnt my lesson - have to start any exercise with really baby steps and then build it up really slowly.

I'm not sure if this is due to lupus; I also have fibromyalgia, plus hypermobility and osteoarthritis so never really know what is causing which ache or pain. My New Year resolution is to do more exercise and increase the amount but really slowly. At the moment I walk for 18 minutes a day, next week I plan to do 20.

May be worth asking for NHS physio referral - I have found them incredibly helpful.

Happy New year xx

[Barnclown]

Yes, and it's tough to accept.

Am 60 this year, had SLE and hypermobility since infancy and been coping with exercise/physicl activity reactions all my life. There have been phases, even years, when I could be more active and was (yoga daily, hiking, back packing, gardening etc) but I always tired more easily than anyone I was with. As I got into middle age I became so limited I virtually gave up excercise, especially as I was in a cervical collar most of the time due to a childhood injury combining with SLE effects. But after a series of denervations ops on my spine I gradually built up a daily routine mixing pilates/yoga: 30-40 min of vvvvv slow gentle stretching. I kept this up more or less daily until last year when a long term bone infection put me on 5 months of aggressive oral antibiotics which made me fel so lousy I couldn't excercise at all. Since then, I've only done the pelvic floor exercises my GYN physio taught me several years ago: I can do them without flaring up! And I do my gentle household chores plus maybe 1-2x a week I manage gentle walks of say up to 45 min ok, which includes going to shop in our market town, when not on antibiotics, most of the time I'm only on 400mg plaquenil daily plus all the usual lifestyle management (anti inflammation diet & supplements, meditation, afternoon naps, flippin pacing myself etc etc.) it's all pretty boring...feel very limited every day, but at least I manage to keep my flares sorta down to a minimum more of the time than when I drove myself harder....so I really on't think this is just about me growing older...of course, people tell me I look very well and young for my age etc haha

For what it's worth I have found this really considered guide useful: prepared by a Brit physio who specialises in cases like ours: Pilates for people in pain, by Claire Sanderson. I think you have to order it from her direct. Let me know if you want her contact info (or you cn google her: she practices in st Ives Cambridgeshire I think). In my decades of studying approaches to excercise for people like us, this book has been the most sensible and comprehensive I've found. It has helped me a lot to come to terms with my condition and the effects physical activity has on me, and helped me accept that I am not alone and can find some comfort in being able to be even as active as I can be...of course this wonderful forum has also helped a lot

Take care & good luck

[Barnclown]

PS am also on amitryptiline but try to keep to only 10mg daily at night: I have a feeling this may help a bit with pain generally....when I get into major spasms I take very strong Rx from my pain specialist who is a big excercise nut, lways urging me to try to do more...

[brave in reply to Barnclown]

thankyou barnclown