Exercise....

[uzi41]

Any suggestions on what excersise i can be doin...as hospital appointments are so long inbetween..... Need to do something, im starting to stiffen up with the pain in my legs... Uzi

[Hidden]

i too suffer with legs especially upper thighs kness they can constantly ache which scares me so i have taken up road cycling but im very gentle with it and stay in a low gear. i also have a dog so i walk everyday even if it kills me (which it can do) but the big question is has it made a big improvement on pain and the answer is sadly no, but that said when i have done some form of exercise my mind feels better it gets me out and fresh air helps me stay awake but when you first start please take it slowly and whatever you do don t over do it.

some people love swimming but i just don t have the time in the day for that and by the eve im just too tired but its supposed to be very good too.

[flutterby]

I too try to walk everyday, I incorporate it into my day by walking either to or from work. Sometimes I do feel about on the verge of collapse, but think that I would be stiffer for not doing it. I love swimming and find it really beneficial but haven't been for a while, it is hard to make the effort to find the time especially at this time of year, plus I was picking up a bug every time I went after cyclo treatment!

It might be worth asking for a referal to a phsio as they could give you specific exercises to help with problem you have. xx

[Purpletop]

If you can afford it, work with a good personal trainer for few sessions. He/she will take into account your illness, assess your mobility needs and devise a program tailored accordingly. Each time you see him/her, the program gets adjusted to your state that day but also to how much you've progressed. It is money well spent because it isn't that you only exercise but you do it in a safe way, without injury and help specific parts of your body that need the exercise most.

[uzi41]

Thanx folks, all good ideas, i work as a teaching assistant in a primary school, so am on the move all day. By the time i get home ive absolutley had it, also dealin with a 10 year old. Was hopin to start philates next week, hav never done this before, hoping it will loosen me up a bit more...thanx again for suggestions. Uzi

[Geordie-chick in reply to uzi41]

Hi I'm new to this site and lived with suspected lupus for over 2 years now. I also work as a teaching assistant and have a 12 year old. When I was really ill with it I went swimming this was great both physically and mentally. I now do and hour everyday of exercise and my daughter comes with me. It does kill me but I really enjoy it. My only advice is don't sit down after work cause if I do that's me done. I really have to push myself but trust me it doe make u feel great eventually promise.

[uzi41 in reply to Geordie-chick]

Hi Georgie im new too, its been about 2 weeks and i live in london. My 10 year old has ADHA so always keeps me on my feet, but u r rite when i get in about 4ish i do sit down and find it extremely difficult to get up..also i cant swim, last year did do aqua zumba and loved it they no longer run the class.. Uzi

[Geordie-chick in reply to uzi41]

I live in Caerphilly. I would recommend the gym then first before u do I class so u can go at your own pace. Most gyms allow children to join too. If you explain your condition at your induction an instructor will set u a routine. Hope you get sorted soon x x x

[uzi41 in reply to Geordie-chick]

Thank you nice to chat to u... Uzi

[sollyn in reply to uzi41]

HI uzi, I couldn't swim in the beginning but I used a float that looks like a woggle. You can swim to your hearts content then. Also would help to wear your son out!

[Voutton in reply to Geordie-chick]

I read with interest your post I have had SLE my whole life though diagnosis came when my second son was 9 I am now 62 I like you worked all my life , and pushed myself to achieve and complete my tasks This is not a good idea Learning to pace yourself (which I found very difficult ) is by far the best route to take I would want to finish my chores take my children out spend time doing everything with them but this only resulted in flares whereby after work I would come home and go to bed. I do hope that I am explaining this well Mostly what I'm trying to say is please don't push yourself Lupus doesn't like it she will flare up and that is worse I have had so many issues I now know that had I listened to my body and rested for an hour or twenty mins instead of trying to get things done I would have achieved the same but without the pain Take care and pain free x

[uzi41 in reply to Voutton]

Hi Voutton, thank you for your message, i do to make a routine, doesnt matter how i do and dont push myself i hav never felt ao worse....i think i need the people around me to understand but its a battle....tgank u again... Uzi

[irenc in reply to uzi41]

I am 68 I do pilates and its terrific. Been doing it for years. I see from my grand daughter 10 year olds are like the 15 year olds from long ago.

[gillypom]

I try and cycle and swim when I feel up to it but this time of year I really don't feel like going out in the cold. I had a few lessons in yoga and I try and do some when I feel up to it at home and it has certainly helped me. The gentle stretching does wonders for my joints. When the weather warms up, I will probably not do so much yoga and try swimming as well. I think you just have to try and find something that suits you and not to push yourself too much. Good luck with it.

[lemonface]

Hi Uzi.

Have you thought about trying Tai Chi?

I have taught T C now for 10 years and it has really helped me as well as the people I teach.

It is very gentle movements and you can even do it to begin with seated. A good dvd to get if you cant make a class is `Gentle Tai Chi by Dagmar Munn`. it is only about £4 on amazon. It is a little old fashioned in the gear they are wearing but the content is there for the basic easy to learn form. You will find that once you can get into regular moving and stretching that the pains will ease as you release the endorphins (bodys natural painkillers). Good Luck x

[uzi41]

Thanks again all....really good information, i guess it is more trial and error. Tai Chi sounds good, my other problem is i become very lazy when i am at home, i make excuses to do any gorm of excercise at home, hav the dvd's, so if i know that i have paid for classes, i will have to go, no excuses... Uzi

[Flippityfish]

Hi!

I like to swim, spin and body balance once a week, on a good week!!. Otherwise I just stick to body balance

I like to do Body balance which is a mixture of tai chi yoga and pilates to music because it's not too much strenuous a bit of stretching, flexing but it still gets you going a bit!

[uzi41]

That sounds great i will get googleing....thank u... Uzi

[Voutton]

Hi there It is so easy to just sit when we have pain ,but like pinky I take my dogs out the fresh air clears my head and the gentle walk does me good I have found Tai Chi to be ever so good as it is a gentle moving of the joints a good instructor will work with you if you explain any joints that are troublesome I also found swimming too exhausting by the time I changed then dried and got dressed I was exhausted I joined a local winning by losing group run by the NHS which is great ,as it keeps a check on my weight and we have a monitored exercise class after which is gentle but tries to get your heart rate pumping It is like a mini gym only three min on each bit of equipment I love it Apart from the excercise the meeting with other people who have health issues is good I joined one of the gyms a few years ago it was like trying to be a Greek goddess in leotards Not for Lupus sufferers Hope this helps some Take care and be gentle in what you do x

[uzi41]

Thank you for your advice, didnt think of researching the NHS first.... Also after a day at work i cant even think about excercise, but know that i am starting to really stiffen and need tko find a long term solution. Uzi

[brave]

Hi all.exercise,i was an absolute avid fan ,however i have an adverse affect to all forms ,plus my ligaments do not stretch so i seem to tear muscles brushung my hair ,i read all these amazing blogs of how you all exercise,even some of you spin ,swim body balance ,even in my good years i couldnt manage that without feeling so much pain and complete exacerbation of disease,i would give my right leg to exercise ,and feel i read so much about how all other lupies seem to exercise ,so why cant i??????i try and try and try ,only to crash and burn everytime ,if any body has adverse effects please tell me so i dont feel even more of an alien in this lupus world .if you can exercise ,go for it ,it must feel amazing .My advise would be small steps though x

[uzi41]

Hi Brave i feel like that alot of the time....i think u can only do as much as u are able to.... I know when i over do anything i will pay the price and i hate takin painkillers. I hope u find something which u are comfortable with, as i hav to find some form of exercise quickly as my weight is increasing. Uzi

[brave in reply to uzi41]

Uzi41......i used to push myself to train hard ,it gave me a mental lift but always payed the price ,swollen lymph glands even worse tender muscles ,a feeling of flu,but i would take painkillers ,rest a few days and be good to go again ,i did this for 9yrs ,untill 12months ago when instead of recovering i never did and slowly have got worse and worseand now a gentle walk with my family will knock me for six ,so depressing when im supposed to keep my ever irregular beating heart fit .I have adverse effects and wander if ever i will be able to exercise?:(uzi41 i like you am expanding by the day ,lol!i love my food ,dont binge on rubbish but do eat good healthy portions of homecooked food ,and cant cut down for the life of me ,its my true comfort and gives me energy to drive my failing body through the day ,do you feel the same>im avoiding looking at all old photos ,in two years ,my weight is going up ,my hair falling out ,my skin dull and worn and so much more and still people say ....you look ok.ha ha ha !classic response from a none lupie .i wish meditation burnt calories lmao!

[uzi41]

This time last year i was doin 3 or 4 zumba classes a week, i did a sponsored slim and raised money for the school i work in, even though i was diagnosed 8 years ago everthing has kicked in this year and now struggle to climb up and down stairs, get looks from kids and the adults are all caring but very difficult to make them understand....my 10 year old loves a cuddle with his mummy but doesnt realise when he is being a bit rough... Not on purpose just bein a a child. So totally know where u r comin from, hav problems with my teth too many sweets when i was younger, so find chewing hard..so go for the foods that are not good for me but easy to eat..eg biscuits dipped in my tea... Uzi

[didiz]

Hi Uzi

I used to exercise almost everyday- spinning, body pump, body combat, body balance, swimming etc etc but that was 3 years ago prior to diagnosis of SLE and APS and all the treatment and medication that come with it. I started swimmimg again this year and at first I could only manage a few lengths in 10 mins but I now regularly swim at least 4 to 5 times per week.

However I have also struggled with pacing myself in all things in life not just exercise so each time get in the water I know that sometimes I can swim more lengths and other days less. I am learning to listen to my body and that is no mean achievement! Swimming is a form of meditation for me as I switch off and can only concentrate on counting the strokes and lengths.

I know for bone health I need to do more weight bearing exercise but, especially at this time of year with cold weather,snow and ice, even walking makes all my joints ache. So I content myself with walking up the stairs at work, walking to the local shops instead of driving....all things that add up.

I have done tai chi and chi gong in the past and have found a local tai chi class that a collegue recomended and when the snow and ice clear I will try that.

The important thing is to find something that you enjoy,best time of day (I am a morning person so swimming in the evening is a no no) & pace yourself but the effort is worth it........even after a 20 min swim I feel knackered but I have a smile on my face!! ....didi

[uzi41]

Hi Didi im such a morning person too, its a shame i work, really tires me out.... But hopefully tomoro night i will try pilates....and i will feel a bit better... Thanx for your comments, i feel very very old not my 41 years old.... Need to get all aspects of my life in order...thanx again.. Uzi

[spain1]

hi ime new on here can any one tell me if i can claim disabilty allowance i was diag with lupus sle 3yrs ago but if any of you get d/allowance now can you tell me the first steps i have to take thank you

[Sher78]

U SHOULD b able 2 claim DLA. Here's the link 2 download the form but make sure u add every little detail, no matter how insignificant it seems. The best thing 2 do is get Citizens Advice 2 help u fill it in as they r experts at it & know all the 'buzz' words DLA will look 4 when assessing u're claim. Good luck ;0) x

[Silvermyst]

Hi Spain, welcome to the site

It is possible to claim for DLA and be successful. As Sher said, make an appointment and get your local CAB to help you fill in the form, include everything (no matter how trivial) about how Lupus effects your day to day living and most importantly include what others do for you. For example, in my case I am unable to do much in the way of cooking due to pain and stiffness in my fingers, I have no grip at all and am absolutely lethal with pans of boiling water... hence my hubby has had to learn lol. Anything like that include it as those are the things that they are looking for.

Good luck x

[irenc]

I have arthritis in knees but at least I can walk. I tried exercise bike, no use for me. So I have to walk slowly but its better than sitting. Uses more calories