Running with lupus

[Sallmell]

Hi All

How have you all been. I have found this heat a struggle and doing my best to manage it.

I wondered if anyone who has lupus still runs.

I used to run on a regular basis but found it made me so tired . I really miss it though I walk regularly. I wondered if anyone has continued successfully x

[NeuronerdDoaty]

7 years ago I ran 5.5 miles daily and 14 on my days off. 4 years ago it went down to 3 miles daily. Last year I walked the 3 miles. This year if I walk a mile throughout the day I feel good about it. My legs are beginning to ache with coldness and I can’t breathe right. Lupus gave me SVT so I now have the wrong heart beat. My large muscle groups melt into the chair when I sit down. Calisthenics is all I can do with light weights. I’m 55. My doctors kept talking about age and estrogen. That’s stupid because I’ve been lifting and running since I was 16.

I don’t know how old you are but I think you’ll get muscle fitness longevity out of walking fast. That’s just my personal opinion. Good luck💛

[Sallmell in reply to NeuronerdDoaty]

That is my way of thinking too. Thank you x

[Jmiller623]

Was an avid runner until I got a stress fracture. Now I’m a rower. I think exercises easier on the joints and low impact like rowing, biking are better in regard to cardio. I also kettle bell which is like Pilates crossed with weight lifting. Resistance bands probably would work as well. You need to keep a strong core so your bones and muscles stay aligned. Your body is no more than a wire and pulley system.

I know running is easy, free and an outdoor moment but hate to say, staying indoors is better. I used to be a workout freak but I have to say daily stress on the knees and feet is no bueno for lupus. Just my experience.

Hope this makes you feel a little better if you wanna put your feet up in laziness for a few days. No harm. Take care of yourself.

[Sallmell in reply to Jmiller623]

Thanks for this looks like walking and stretching is the way forward x

[Northernelf8]

I used to run & loved it. Can't anymore - too much pain & I feel like I'm in someone else's body. These days I cycle a lot, walk a lot, and do some step and weights (lighter than I used to).

Up until almost 2 years ago I used to teach classes, several a day (17 years) & lifegaurd (11 years). Now I do casual clerical work. I miss it but had to modify. Water exercise is good to and stretching is crucial.

Miss my old life. I'm 50 but to the outside world I look younger & fit - people don't know how 'broken' I am.

[Sallmell in reply to Northernelf8]

Im so used to doing more but its really making me struggle. I walk every single day but really could add some pilates in x

[milkwoman in reply to Northernelf8]

I can relate! Doctor's always look at me like, "Why are you here? You don't look sick...."

Being fit but yet broken is a double-edged sword. I have to fight to be taken seriously. My regular doctors now know that my desire is to be as fit as I can so I need their help (at times) to make sure of that. I'm 52 but look late 30's/early 40's.

Sounds like you have found what works for you. Don't be afraid of cardio - you just have to work up to it. Running is harsh so I do elliptical trainer. Some days are challenging but I am def rebuilding my stamina and strength. Just wore a bikini this past weekend amongst 30-year olds and I was the most in shape one there!

[Sallmell in reply to milkwoman]

Thanks hun rrally appreciate this. Its tough isnt it but I know that being as fit as possible will help me long term. I walk miles every day. I have a dog which motivates me especially on the days my body is really hurting and it would be easier to stay in bed.

Well done on the bikini front. !! 👍

[Sallmell in reply to milkwoman]

Im going to start back walk/running tomorrow and build myself up. 🤞

[Sallmell]

Thanks for this lovely x

[milkwoman]

Don’t run but do HIIT cardio on my elliptical trainer. Used to do more but currently able to manage 5-6 miles, 4 times a week (totalling 20-22 miles in a week). I also do strength and core training. I find I need to SWEAT and get my heart rate up. My current workout routine accomplishes that.

It’s tough at times but I’m better off for it. I started off slow and built up stamina and muscle strength to get to where I am now. I’m at a pretty good pace - 8:20.0 mile most days. The key is proper dynamic stretching and rest days.

I would think that the pounding of running on a hard surface is not good for you. Try to find an exercise that gives you the same “feel” and cardio high without the stress to your joints. Walking could be it but you’d have to do a very quick pace and find a route that incorporates inclines/declines to work all the muscles. Also, build up your leg strength by doing a lower body strength workout (squats, lunges, etc). Don’t forget upper body and core too.

[Sallmell in reply to milkwoman]

Really appreciate your advice. I live in an area with lots of steep hills and walk at pace. Your fitness level is amazing . X

[milkwoman in reply to Sallmell]

While lupus is difficult for anyone who has it I think it is especially mentally devastating to those who followed a fit and healthy lifestyle prior to diagnosis.

Believe me, I had to work up to where I am currently. I started off light and built up slowly. Over the years, I've lost and regained my fitness many times. I call it "being knocked down the hill and having to climb back up". It is not easy and I've been discouraged. I love that I'm in a good place right now. I hope it lasts.

I think doing anything outside is particularly tough. I have the luxury of not dealing with weather or sun/heat (which is a trigger for flares) or cold or traffic, etc. I can workout when I'm able despite anything going on outside and know I'm not pounding my joints. I invested in a good, commercial machine and my workouts are my "physio". I know not all can do this. I'm very lucky.

Do what you can and be kind to yourself. I can see you are determined. You'll get there!

[panda2]

You've had some great replies and suggestions here. I'll just add that you can get fabulous cardio workout and no pounding stress and no outside sun damage (if the sun affects you) by swimming. I highly recommend it, even just to mix it into your exercise regime. It helps with the fatigue too, I find.

Panda x

[Sallmell in reply to panda2]

Thanks lovely. I go out at 5am or 6am so to avoid the heat and sun. X

[panda2 in reply to Sallmell]

You've got it sussed! This attention to your fitness will likely go a long way towards keeping you as healthy as you can be.

Px

[Sallmell in reply to panda2]

Thanks hun just need to build up slowly x

[loopy4me]

Hey, this is an old topic, but I find it very relevant. I've always been extremely sensitive to heat. Didn't really understand why until my recent Autoimmune Diagnosis. Now it all makes sense.. I've been suffering in the heat my whole life. I've been active tri for 25 years. I always wondered why I could never stay hydrated and able to finish races in the heat without heat exhaustion or heat stroke. I feel I cannot keep enough water in me to stay hydrated as water goes out really fast and the sweat does not cool me off. If I drink enough water to maintain hydration, my electrolytes get "diluted" and dehydrate that way. So, I've learned that I can not go at a high level in the heat.