Is it possible for me to get back to skateboard with autoimmune disease ever?Or do I need to give it up forever?

[Crow9]

Hi everyone I have an autoimmune disease they say it might be lupus and myosis and Systemic Sclerosis. I don't even now which one it is or if it's all of them combined. I got diagnosed in 2022 and at this point all exercise and sports declined to none. I used to skate board, do boxing and play basketball, walk for hours and that declined slowly as I started getting extreme fatigue since 2020 and became unable to move and get out of bed. I was finally able to get diagnosed and I am on Hydroxycloroquine and that seems to be finally helping. I have also tried alternative methods such as Ozone Therapy which I found that helps me function physically and mentally with little as possible flare up if I am not stressed for 3 months and I am planning on saving up so I can have Ozone therapy for 3 times a year instead of once a year. So hopefully I will feel better most of the time. I just really want to get back into sports and exercise mainly just to skateboarding. If you have any advise you can give me that would be great. Thank you so much.

[Sarah74]

never give up something you love.

I’m 50 next year and was diagnosed with lupus aged 18. I’ve done kick boxing, hiking cycling and gym.

I’ve had to tailor right back at the moment as I’m having a bit of a flare.

I take 10 medications and about to have Rituximab next month. All I can do at the moment is some yoga and very light weights to stop muscle loss completely

Start slowly .. more slowly than you think and build up….

Never stop moving no matter how small …

Best wishes x

[Crow9 in reply to Sarah74]

Thank you so much, that is very encouraging and inspiring. All the best with your health aswell. Thank you.

[WinterSwimmer]

Hi Crow - I am going to say yes. Yes you can get back to your exercise. It might not be quite the same - skateboarding is a tough sport - but it will be pretty good. It will be joyous and it will make life worth living.

Before lupus, I swam 80 lengths before work five mornings a week. I was also a lone parent with all the responsibilities that entails, and was doing up my house at weekends. Suddenly (it seemed) I could barely swim 10 without being exhausted, was in pain 24/7 and couldn't even manage fairly basic things like getting up and down stairs or turning a key in the front door, let alone walking to the shops. That was 20 years ago, but I still remember how desperate, angry and miserable I felt.

It has taken a long time to get the treatment right - and there have been some huge glitches (flares) along the way, but I do swim nearly every day - outside, in the sea, all year round. I don't do the distances I used to do - but I get joy and a social life from it as well as fitness. I also walk briskly with nordic walking poles for an hour most days (brilliant for joints but highly recommend a couple of lessons in technique before anyone takes it up). There are things I cannot do and know better than to attempt - but people with lupus can and do do all sorts of things.

No - I don't have the energy I used to have and I have had to learn to live with a level of pain. But I know people my age who have no 'conditions' who are less fit than I am and do less.

It might not be straightforward - and may take a few years to get back - but you can do it. You will have to learn to manage your energy levels (and there will be days when all you can do is stay at home and read a book) - but please don't despair. There is life after lupus - and I am sure lots of others here can say the same. The early days are hardest I think - because it is such a shock to the system. Good luck.

[Crow9 in reply to WinterSwimmer]

Thank you so much that's very helpful. Hope you continue to feel well aswell.

[SurferGuy]

Hi Crow,

Lupus is an absolutely individualistic disease - it affects each person very differently.

I was diagnosed in my 30s. Before that I was playing football, running and gymming twice a week. I was also surfing at any given opportunity. But all of this halted for a wee while until my disease was under control.

I still surf, and at the age of 40 something, I've taken up skateboarding too. I'm totally rubbish, but absolutely love it. BUT BUT BUT I have to be careful. Very very careful as I've been on steroids for many years which has caused mild osteoporosis and weak bones. So if I get just the slightest of knocks I bruise. I've cracked my ribs a couple of times doing silly things. My first ever skate board session, I went flying off the board in a shocking way and fell on my side. I was fine for a few hours, but later that evening was in excruciating pain, and for a few days after. But none of the above has put me off. I just have to be super careful and not silly (which unfortunately I just cannot help being).

Don't give up. Just assess yourself. Take advice from your Drs. And be sensible and careful.

[Crow9 in reply to SurferGuy]

Thank you. I will try to hopefully I will be able to. Good luck to you aswell.

[Jumper99]

It’s completely down to you and how your body reacts to the exercise and to the medication they give you. No one can guess if you can do it or not. It sounds promising that your fatigue is improving but don’t let that push you into trying to do too much too soon. Try to do a little bit more when you are feeling a bit stronger and then stick to that for a while until you know you are still stable at that level of exercise. Then try a little bit more. Or if you get a flare, decrease the level ,of exercise again. I wish you lots of luck with getting back into an acceptable lifestyle again.

[Crow9 in reply to Jumper99]

Thank you so much.

[Sevpuri]

Hi, every thing possible, just think positive always and be a strong, I was passed through twins pregnancy, that time Doctor and family every one told me it's very high risk for me, but I'm always positive and , my both kids are this january will be 9 years old and healthy, so be strong , positive ,happy .good luck

[Sevpuri in reply to Sevpuri]

Also help, yoga and strong willpower

[Crow9 in reply to Sevpuri]

Thank you so much and congratulations that's amazing.