What exercise do you do and how often? How easy did you find getting your fitness back following treatments and to what level?

I have just finished my chemo treatments and have signed up to a beginner's running club. I was stiff after my first attempt (which expected) and I hope I can increase my fitness whilst reducing my preds.I used to regularly run 5-7k but nowhere near that now and I also went to 4 or more fitness classes a week too. I'm now a hefty 90kg and looking for others to share there their weight loss and exercise regimes. What is a realistic expectation? (Luckily I have no conditions which would hinder me other than my WG)

[SusanCh]

I go to easy aqua classes twice a week and that is enough for me. I put a lot of weight on with steroids and not being well enough to do anything after being diagnosed with WG. I couldn't do any running exercises as I have damaged discs through osteoporosis but it can manage exercises in the water. Stiff afterwards like you but keep going!

[vargus57]

Hi ive had wg for 20yrs now my main exersise is looking after and riding my horse. i do gardning as well i like to keep active!

[kath12341]

good luck I hope you are able to improve your fitness unfortunately my wg although in drug induced remission.Is causing me further weakness. I keep cutting down my hrs at work. and have tried to keep active but when I push myself. I end up getting so out of breath and tired I have been sent for several lung function test and even an angiogram so I am unable to exercise. i love spa days but even a day doing some gently swimming and relaxing leaves me shattered for about 3 days. Hope you continue to improve

[AndrewT]

Dear FatFaceBob (I bet you have a really, really thin face, don't you!!),

I started at a gym, about six months after a kidney transplant, I have a 'special' circuit because I have 'heart failure'. Let me just qualify that- one of my test, some years ago, found a slight anomaly in my heart reading. Since then I have had a successful (so far anyway) kidney transplant....Personally I don't think that there can honestly be much wrong, in that department anyway!!! Other than this I do a bit of, fairly gentle (usually anyway) exercise in my Headway group, every Tuesday.

In short bob we are all different and I cannot say what is going to be good, or indeed, possible for you. A 'chat' with either your doctor/GP/consultant or a gym direct may, very well, have a positive outcome for you.

Sorry that I can't be more help, good luck

AndrewT

[gsmith]

i find the cyclo and pred has left me very weak, full of enthusiasm i tried water aerobics ,after two sessions i could hardly walk and was exhausted for a week ,i am terrified to try more than gardening and the occasional walk, as i need enough energy for housework. i sound to myself as though i am making excuses, but if i could find a method of exercise that didn't leave me aching for days.(working it off don't help),and not falling asleep as soon as i get home.i would do it gladly....at 67 and 8 years into wg.i think i am a lost cause.....georgia

[PMRpro in reply to gsmith]

Water aerobics is actually very hard work and when you start after illness you must go at it very gently - everything you do in water requires approx. 7 times as much effort as on land and many people give up because they have overdone it the first day. Originally, I eventually went to classes every day of the week but at first didn't do it all or didn't do it to the full extent and there was another lady with CFS who could do very little at first but said she found it made a massive difference - I don't think she ever stayed in the water for the whole time and certainly didn't do anything with the foam dumbbells or increasing resistance using a woggle. You can exercise arm muscles just by moving your hand through the water with your hand flat to increase the resistance. The best way to go about it is have a physio session in a pool and they will teach you effective suitable exercises - even just walking in the pool is good. That is how I started nearly 2 years ago when I could barely walk 100 yds even with crutches - now I walk fast for over 30 mins almost every day.

[Katie18]

I have Churg Strauss and was diagnosed two and a half years ago and have gradually reduced my steroids to just 1mg a day. My symptoms included severe foot drop as the nerves in my lower legs were damaged.

I love exercise - I was a total addict to aerobics and spinning - and the gym has been my life saver. As soon as I could hobble there on crutches I went as it helped keep me sane. Initially I did rowing and cycling in the gym as I has foot aids and some swimming. I really think exercise has helped my nerves grow back - I no longer have foot drop.

I am now back to Zumba, aerobics, body pump and aqua aerobics and go to the gym about five times a week. CS has affected my energy level a lot, I get much more tired quickly but I still do as much as I can as I think I would be worse if I didn't do it. The aerobic activity helps my lungs and asthma. I do feel it in my muscles a lot more as I ache and feel stiff - but it also helps me mentally deal with stress and be positive.

No matter what I do though I can't get rid of my weight gain due to steroids - I gained one and a half stones and have only managed to lose half a stone. Dieting doesn't help me either - I guess I need o be patient.

I agree that everyone is different and it depends on what level of exercise you are used to and how your disease has affected you. Good luck with it though - my view is you do as much as you can - but take extra care not to overdo it - listen o your body more (although I'm still learning o do that)

[PMRpro in reply to Katie18]

The only way I have been able to lose my steroid weight has been by cutting carbs quite a lot - to about 60g/day. Loads of green and leaf veggies, 1 piece of fruit a day and almost no bread, potatoes, rice or pasta. I've lost 35lbs.

[Catcall1 in reply to PMRpro]

Ive done exactly the same except I also have a yogurt for brekkie. I cut down to 10mg prednisone at xmas and then 5mg in april. Ive done the same food thing since then and have lost 32 lbs. I was told I had fatty liver disease in March (which motivated me immensely).. my liver iu/l was 66 and should have been 33. My bloods yesterday showed ive managed to get it down to 23. Sooooo pleased. Cat

[Lupylass]

Hi there.

I used to do triathlon (badly!) and adventure racing, but these days I find running too much for my muscles and ligaments. I walk, cycle, swim and do Pilates. I do as much or as little as I feel like, depending on my energy levels and whether or not I'm flaring.

When I got back to exercise after my initial illness, I built up very gradually. Having always followed the 10% rule as a triathlete (don't increase your training by more than 10% per week) I'd say follow a 5% rule with vasculitis. And make sure you have plenty of rest days in between, whilst you build up your strength and stamina.

Good luck with your running. I hope you manage it better than I did, and enjoy it!

[rrahman]

Everyone has shared very valid points.

I was diagnosed exactky a year ago now and I can tell you I have just started to becoming a lot more active within the last month.

My consultant suggested 2miles awalk a day.

Which I guess I reccommend I couldnt do 2 miles no way. So id say start off with going to a shop that is 10-15 min away from you and than walk back. Build it up like taht. It does work.

I also returned to swimming. Started with 10 laps and now ive just started to do 25 in 2-3 months. So slow and steady wins the race.

I put on 3 stones since I left hospital. My highest was 84kg. Im now 75kg. Since october.

Its a lot of hard work. And drugs dont favour us either but if we watch what we eat - take out cheese bread and potato as much as we can and walk a bit swim a bit you should feel the difference in a month.

Remember not to be hard on yourself. We have to be patient with these things exhausting yourself and impatience will stress and make you feel worse.

I now aim

2 x swimming

1 zumba class

1 half an hour walk

And other days I do a home excercise dvd for 20min. (Gillian 30 day shred) If my body feels exhausted I take a break for a day but will do some cleaning or cooking to compensate.

I have 1 slice of bread if I have to as toast or anything

Potato aside from inside soup (homemade) will have once a week as chips.

No crisps or half a handful.

Chocolate 1 -2 squares of a bar or melt a bar down with milk and pour over fruits.

NO FIZZY drinks at all.

orange juice half a glassful 3x week. (If you have a orange squeezer than better to do it fresh homemade EVERYDAY)

And i have a lot more veg. Best way - veg soup and roasted vegetables.

Dine out or take out food ONCE A WEEK only as a treat.

I just have tried disciplining myself. I wouldnt say im the strictest but I dont kick myself for g

[Iris311 in reply to rrahman]

Does pool water affect your skin? I want to take my mother to the swimming pool but she has thinner skin due to pred so that I am a bit worried. My mother has GPA.

[Hidden]

Thank you ALL for sharing your personal experiences. I appreciate your 'tried and tested' advice. I guess it's a 'see how you go' situation as we are indeed different. It's reassuring that there are others who have been here and understand the challenge. I will be taking each week as it comes, I have set realistic weight loss goals and I am writing down everything I eat (that stops the extra choc or crisp falling into to my gob by accident) I think I also have to face facts that I might never be like the old me again and deal with the denial of being unwell. Cheers and thanks again

[Haggiss]

Hi,

I was diagnosed in October 2008 (aged 38) about 1 month after my chemo finished I was back training. Since then I've completed numerous marathons and triathlons. I train 7 hours a week and I'm still on Azathioprine. If you feel ok just go out and do it.

Cheers

[Hidden in reply to Haggiss]

Cheers Haggis, I like your spirit! You made me smile. Totally in admiration of your tenacity and determination... Thank you.

[Haggiss]

No problems Fatfacebob - thanks, I used to get called "Moon Face" whilst on Pred. I thought it was the end of my world when I was told I had WG, it's the exercise that keeps me going.

Cheers and keep up the good work

[Littledot3]

I was very active before falling ill- I had done the Great North Run, London to Brighton Bike Ride and regularly mountain biked and did 3-4 cardio intensive classes a week at the gym. Unfortunately, it took a long time for me to be diagnosed with Takayasu's Arteritis - I also had a pulmonary embolism as a result- and gradually over 3 years before treatment, my shortness of breath just got worse and worse. I can no longer do the cardio intensive classes, mountain bike or run and get out of breath walking briskly from the car into the house which for me is really upsetting. The doctor says my lungs are permanently scarred. However, I do still try and do what I can which is body balance, walking, gentle cycling on the flat and body combat but without the jumping about. It's hard and makes me tired but I've always exercised, it helps with the steroid weight gain and I think the fitter I keep, the more it will help me. I ahve to be sensible and keep within my tolerance a sthere is a danger of pulmonary hypertension. I have found that since being on the drugs I also suffer with muscle weakness and my knees hurt which makes even the more gentle activities difficult but I just do what I can. Good luck with the exercise and weight loss and just do what you can manage.

[Hidden in reply to Littledot3]

I guess you must find it bit frustrating not being able to do as much as you could do before, but what a boast to be able to say you've done all those events. I'm glad you've found what works for you now, it must have been tough. I know what you mean about the drugs...I don't know where the symptoms stop and the side effects begin. I agree that exercise is good, even if it's not at the level I was before. A healthy mind and all that... just getting out and doing stuff is helping me feel more like my ' normal'. It's nice to do something other than hospital appts and have something else to talk about too. Thanks Littledot3.