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View Full Version : Does anyone with Lupus on this forum have an active job or sporty lifestyle



Chickpea
05-01-2009, 03:23 PM
Hello everyone,
I was diagnosed with Lupus yesterday. I was initially misdiagnosed with plantar fasciitis, and then after seeing a physio was told my core muscles were not working properly, and suffered with a left ankle/foot pain, and muscle problems within my whole body for nearly two years. I noticed mild joint problems around 3 months ago (mainly in hands). My physio wouldn't let me run, dance or do anything physically active, apart from walking on a flat surface due to the 'supposed' core problems for the past 1 1/2 years. However I have remained reasonably fit, and due to previous weight training I am quite strong. My problem is I started working in a physically active job 5 months ago. So far it's not really a problem (apart from tiredness with early starts and chronic muscle soreness), but I am worried about the possibility of losing my job in the future due to my condition worsening . I haven't been able to find anywhere on the web where someone with lupus has a physically active job, or maintains a sporty kind of life. Is there anyone out there that has both or either??

I tried Mobic last week but had an allergic reaction. I started Plaquenil and celebrex this morning, so hopefully that will have a difference regarding the (bearable) chronic muscle pain I have.
Thanks,
: )

wrightrs
05-01-2009, 04:04 PM
I know a lot of people with lupus that still work, In very active and demanding jobs. I'm just not one of them.

If I was you, I would keep doing it. It might help keep you well. I miss working and trying to start something on my on with flexible hours.

pamjw
05-01-2009, 05:27 PM
I m a active person with a physical job, constantly lifting and stiring; Cook. I do get pretty tired out, but I keep on going and live with the pain.
I also enjoy flower gardening which can run me down also. At this point and time my hands don't move so well, I just finished some yard work. On the weekends I like to get plenty of sleep and try to fel better. I think it's best for me to keep as active as I can. I recently went on prednisone and I am on plaquinal, they both help.
I would say to keep on working as long as you can. You will know your own limitations.
Pam

MicRoMediC
05-01-2009, 07:15 PM
I am an active person with Lupus. I am a paramedic and lift a lot and my sleep patterns are all screwed up due to working 24 hour shifts. At times it's really hard but it keeps me going. The best thing to do is keep active, otherwise you'll slowly turn into a blob, (for lack of a better word). It's not recommended to do a lot of aerobic exercise but stretches and yoga and a lot of anaerobic exercise is good.
I'm also on Plaquenil and the first few weeks I was on it I had really bad stomach issues and really couldn't eat a lot. My body has finally adjusted to it.

Chickpea
05-01-2009, 09:27 PM
Thanks for getting back to me guys. I also forgot to mention it was an outdoor job - so far I haven't had any problems with sunlight - but expect it will come at some stage. I am also feeling a bit drowsy - I hope this is only temporary with the medication, as my job can also be dangerous if I'm not 100% switched on. (I work on boats). Thankfully I have a few days off before I have to go back.
Thanks again : )

Ria0331
05-01-2009, 10:11 PM
I don't have a physically demanding job and right now i'm on STD with work but I do love to be outdoors and active. My issue is that I am unable to really do anything anymore. Being out for more than an hour or so I get really exhausted, I have been doing some weeding in the yard and I wasn't able to be out there for more than twenty mins. I admire anyone that is able to be out an about without problems. It is very depressing for me cause I love to do lots of things but my body says forget it.

tasha
05-02-2009, 08:40 AM
i am just as active as i was before i came down with symptoms. it's just more painful, but i do it anyway. i don't have a physically demanding job though. that would probably be tough.

my philosophy is- i'm doing it, even if i need to be on vicodin while doing it! usually it doesn't come to that point though because i've found that the more active i remain, the less i flare up. if i go several days without exercise, i'm in more pain. my advice to you is keep it up.

debbie-b
05-02-2009, 04:52 PM
I do have a physical job, alot of heavy lifting and running like crazy, fast fast pace. So far I have not missed any work, but I am in alot of pain at work. I am trying to tough it out, untill I can't do it anymore. I do need the insurance.

Debbie

AyahsClan
05-02-2009, 05:54 PM
Welcome Chickpea!

Lupus is different with everyone, almost like a fingerprint, no two cases are exactly alike so it is impossible to predict how it will effect you in the near and far future. I can tell you I was diagnosed with it in 1985 and did not have to slow down till 1999. I was an active outdoor person, equestrian, hiking, traveling, jogging. I was a horseback trail guide in 1998, in the saddle all day long and mucking stalls.

After 1999 it was up and down and still is. Sometimes I am up enough to take a motorcycle lesson, garden, long walks. It varies. You will slow the progression by starting to cover up. There are lot's of helpful hints around this forum to learn how to do it. There are companies that sell mega expensive uv clothing, and simple RIT uv additive you can put in your laundry. But you must cover up, every inch from head to toe. I recently found a few things on ebay, search "uv protection" on ebay, there are some arm sleeves and hats.

Hope you stick around and keep us up to date. Have you met Grimes yet? He is a sailboat man that was recently diagnosed too.

dsunshine
05-02-2009, 11:36 PM
Welcome Chickpea!
I have to say I work in real estate and month end can be extremely crazy...rushin to fax, copy, cut checks etc. and EXTREMELY STRESSFUL. So my job may not be as physical but it is more stressful than anything I have ever done. STRESS FEEDS LUPUS. I just recently started working out at the gym and I do about 60 minutes of cardio and strength training. My hope is to start doing SPIN class again but due the fact I was bed ridden for 4 weeks and couldn't walk a city block I have to start slow and build up. Working out helps me deal with the stress and thoughts in my head. The mood swings and depression from Lupus and just life overall. As much as working out isn't my favorite thing to do...I do it with hope and belief that it will help me go into remission sooner than later.
My advise is for you to listen to your body. When you are able to work out...do so. When your tired or feeling pain or having a flare up try to rest as much as possible.
I wish you good health and remission!

ashleybaby715
05-03-2009, 03:46 PM
Hi Chickpea!
my name is ashley, and im sixteen years old. i am extremely active still, since my diangosis of lupus! im a teenager, so obviously i'm always going to be on my feet. i work at the pittsburgh zoo, so im constantly walking and doing things there and im also a varsity cheerleader. hahah
so i definetly haven't let lupus stop me from doing everything i love.
yeah, it does wear you down a little quicker, but still... at least i can do it!




Hello everyone,
I was diagnosed with Lupus yesterday. I was initially misdiagnosed with plantar fasciitis, and then after seeing a physio was told my core muscles were not working properly, and suffered with a left ankle/foot pain, and muscle problems within my whole body for nearly two years. I noticed mild joint problems around 3 months ago (mainly in hands). My physio wouldn't let me run, dance or do anything physically active, apart from walking on a flat surface due to the 'supposed' core problems for the past 1 1/2 years. However I have remained reasonably fit, and due to previous weight training I am quite strong. My problem is I started working in a physically active job 5 months ago. So far it's not really a problem (apart from tiredness with early starts and chronic muscle soreness), but I am worried about the possibility of losing my job in the future due to my condition worsening . I haven't been able to find anywhere on the web where someone with lupus has a physically active job, or maintains a sporty kind of life. Is there anyone out there that has both or either??

I tried Mobic last week but had an allergic reaction. I started Plaquenil and celebrex this morning, so hopefully that will have a difference regarding the (bearable) chronic muscle pain I have.
Thanks,
: )

Grime
05-03-2009, 06:57 PM
I can't really speak about work as there isn't any jobs here that I can do. The home building has all but stopped and I am not a fisherman or captain to run charters. So income is very short. Keep working as long as you can.

I do have a sailboat and I don't plan on giving up sailing. My advice is to cover up and use a good SPF sunscreen. When going out on the water I use a SPF 50 and up. I keep is on hand and try to remember to put it on every two hours. I like the Banana Boat products in the spray that is not greasy. I also ware half finger gloves. Up here I buy the cheap ones at WalMart in the paint ball section.

I would talk to your employer about your Lupus. Let them know that it can make you really tired on short notice. One other thing if you are on a charter boat see if the captain will let you pull night watch if at all possible. There is always a way to figure out what keeps you in remission. Keep a log.

froggal
05-04-2009, 12:37 AM
I consider my job very active . . . I am a bartender. However, I work only when I want to! I do have two teenagers who keep me extremely active also, we are constantly playing sports and riding bikes, jumping on the trampoline. I do not let lupus control my life. On the days that my body does not allow me to do those things, I just assume that it is trying to tell me I need to slow down and rest. As for your job, I think that only time will tell.

sugarfoot52
05-04-2009, 07:33 PM
I also work in a physical job. I work at the post office, not the front end where you smile pretty and try to be pleasant. The back end, where lifting 30 lbs. tubs, as many as 400 in a 3 hr. marathon, is not uncomman. I was a carrier for 10 yrs. before I went to the back end as a clerk. I went to being a clerk because I didn't feel safe driving on the road for 3-4 hrs. at a time. It wasn't until I became a back end clerk that the lupus became so obvious that it was hard to ignore. As a carrier, I had already had a couple of joints twist to the point most doctors thought it was rheumatism, that is until they ran a test for it. The last doctor I saw, is still my hero, because he is the only one that even considered lupus. He referred me to a rheumy. The first time I saw the rheumy, he thought I was faking. He asked me to push against his hand and even though I wasn't pushing that hard, he fell back. It wasn't until the tests came back that he said yeah you have lupus. It's been 4 yrs. since that diagnosis, and more joints have gone downhill. The rheumy has said that my joints are getting worse too fast, and since then, we have been trying remicade. The first time was great, no pain. The second time within 48 hrs. my skin got very blotchy and there was more pain than I had felt than before the lupus was diagnosed. The 3rd time, it was 24 hrs. before the rebound, for lack of a better term, hit. Very little blotchy skin, but major pain. Thankfully, I went on a 2 wk. vacation, so work was not aware how little movement I was capable of. No more remicade treatments. Sorry for the book. When it was at its worst, I would bind my joints to keep them in place.

Chickpea
05-05-2009, 03:43 AM
Thanks again everyone,
I greatly appreciate you all getting back to me - how inspiring you all are - hugs to you all.
Not sure if I'm ready to let work know yet - I might wait until it really starts to affect me. Unfortunately I had to stop taking celebrex as it was making me too drowsy, therefore affecting my ability to safely do my job. So I'll just have to wait now for the Plaquenil to kick in : /
But yes, the key seems to be keep as actively as you can without exhausting yourself, and plenty of sunscreen.
I'm so glad this forum exists.
: )

rob
05-05-2009, 06:35 AM
I had a very demanding job both physically and mentally, had to give it up and go on full disability. I also was a bit of a thrillseeker-rock climbing, flying, jumping out of perfectly good airplanes. I once hiked the Grand Canyon twice in one summer. Had to stop all the radical stuff, but like David above, I discovered sailing, and it's a perfect fit for me. It allows me to participate in a sport a little, or a lot depending on how I feel. I don't do any climbing anymore, but I manage a decent hike on level ground from time to time, and I still fly, but I now do it from the ground via radio control. Some people might say models aren't much of a replacement for the real thing, but it's challenging, and gets me outside.

For me, it's all about finding new interests and sports/hobbies that fall withing the limitations that Lupus has placed upon me. There's nothing wrong with coming to the conclusion that a certain sport or activity is too much for you, and finding something else more suitable.

Rob

mortifiedat52
05-08-2009, 10:44 AM
my job is not particularly physical, but i've maintained my exercise regime since being diagnosed with lupus.. i lift weights with a trainer twice a week, do yoga twice a week, walk daily, and i ride the MS150 from Houston to Austin every year.. so, i do alot of cycling and spinning (for heart rate conditioning) from january to april every year...

i'm a fair skinned redhead, so even before lupus, i wore high spf sun screen and covered up.. no change for me in that respect..

debbie-b
05-09-2009, 06:14 AM
I had surgery on 2/3/09, carpal tunnel and cubital tunnel ( elbow), because of the surgery I was on sick leave for over three months. Well this week I had to go back to work, ouch I am in alot of pain now. Like I said before, I have a very physical job and it is killing me. When I was at home and had pain, I could rest and take it easy, but at work you have to keep going. But I will keep working, until I can't do it anymore. I need the insurance.
I felt much better when I wasn't working, because the pain is easy-er to handle, when you can rest and take pain meds.

Debbie

shawnie
05-14-2009, 06:09 PM
I was just diagnose last week and I have the same questions. I use to work out 3-4 days a week, but everytime I try to work out it would cause a flare-up. I haven't worked out in three months and I cant stand it. I gained 25lbs. I like white water rafting, traveling and im scared i wont be able to do this things anymore.

MicRoMediC
05-14-2009, 07:17 PM
I was just diagnose last week and I have the same questions. I use to work out 3-4 days a week, but everytime I try to work out it would cause a flare-up. I haven't worked out in three months and I cant stand it. I gained 25lbs. I like white water rafting, traveling and im scared i wont be able to do this things anymore.

shawnie-stay active as long as you can, do what your body will let you, but don't stretch yourself too far. stress can be a trigger to flares. try yoga or weight lifting, something that doesn't require such energy, maybe you can build yourself back up to those things you love.