A new journey...: I'm new to this site but decided... - LUPUS UK

LUPUS UK

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A new journey...

Silvermyst profile image
15 Replies

I'm new to this site but decided that it would be nice get to know others in similar situations as myself. I was diagnosed with Lupus and Bronchiectasis in 2005 and have had an uphill struggle ever since with consistent health issues. Over the years I have been prescribed many different medications, and finally seem to have settled on Hydroxychloroquine, Mycofenolate and Prednisolone, amongst others.

My life has changed completely but I do feel that many of the changes are for the better. What is not however is the weight gain that has resulted and it is my aim to try and address this now. I have downloaded MyFitnessPal and am starting a new journey... Maybe there are others out there that could join together with me?

Please feel free to contact me, it would be great to make new friends and share experiences.

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Silvermyst
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15 Replies
Jaxqueline profile image
Jaxqueline

Hi I've joined MyFitnessPal too if you fancy linking up I am JACHA5. Good luck!

uzi41 profile image
uzi41 in reply to Jaxqueline

Helloo how do i join this and do i pay for it...

Silvermyst profile image
Silvermyst in reply to uzi41

Just google MyFitnessPal and set up an account, and no charges, its free. Its a daily food intake/calorie tracker and believe me, its a real eye opener! As there is no cost involved its definitely worth a go. If you do, add me as a friend, my username is Shaulana :)

Be great if we can all support each other

uzi41 profile image
uzi41 in reply to Silvermyst

Great thank u so much...x

luppychick profile image
luppychick

Hey welcome I love this site,it has helped me so much.

Look forward to your future posts.

Luppychick x

Silvermyst profile image
Silvermyst in reply to luppychick

Thanks Luppy, I appreciate the support :)

uzi41 profile image
uzi41

I was diagnosed 8 years ago with lupus, its only been this year that hav been on hydroxtchloroquine, can only take at night as makes me very drowdy during the day, dont know how much good its doing, feel worse actually and am gaining weight....any solutions to help me exercise is welcom.

Uzi

Silvermyst profile image
Silvermyst in reply to uzi41

Hi again Uzi, its a VERY difficult situation, I can empathise as my ability to exercise is limited. I have only just joined myfitnesspal but have downloaded another app which can be linked with it as I am only able to exercise intermittently. You can downloaded on to most mobile phones, link it to mfp and then when you go out for a walk, shopping or anything like that it monitors how far you have walked and immediately adds the exercise to mfp. This way i do not feel pressured that i HAVE to exercise on a given day and can do it when i feel up to it. The other app is called Endomondo Sports Tracker. I have only just started but hopeful that it will work :)

Also think that if your symptoms are not improving that you should go back to consultant as there are lots of medications out there and not all are suitable for everyone.

Let me know how you are getting on :)

Delila profile image
Delila

I've had lupus and APS for over 30 years and gained sooooo much weight in my teens due to steroids. Like you I decided to be positive and started to exercise and ensured I ate sensibly. I've kept this up over the years and can honestly say even when not feeling too great a bit of exercise definitely helps and also makes you feel better about yourself. Even though I'm still on several different drugs including prednisolone I've managed to keep my weight down...... Can definitely recommend!

Silvermyst profile image
Silvermyst in reply to Delila

That is fantastic Delila, so pleased you have managed to keep your weight down. I feel sometimes like I am fighting a loosing battle. But I keep trying :)

I VERY much appreciate your encouragement, thank you!

Shanti profile image
Shanti

Hi Silvermyst I could do with some help here, my fitness is not good,was looking for a way to improve it, any advice would be great. Look forward to hearing from you and anyone else involved in this

Silvermyst profile image
Silvermyst in reply to Shanti

Hi Shanti, please see posts above to Uzi regarding what I am trying. I am so limited to what I can do, am hoping this will work... time will tell :)

If you join, please add me as a friend (Shaulana), would be so nice if we can work together towards realistic goals :)

Shanti profile image
Shanti in reply to Silvermyst

Hi Silvermyst thanks for your reply,I will look into it sometime this week only I am not feeling to great and have hospital appointments. I look forward to joining and will add you as a friend,I am Kathleen,willing to try anything if it helps. Goodluck

Jaxqueline profile image
Jaxqueline

To join just google myfitnespal.com and follow the instructions. It tracks your calorie intake and exercise and also gives helpful tips. It is helpful to make you aware of what you are eating, I was quite horrified about the amount of Mars bars I was sneaking in! Good luck everyone!

Silvermyst profile image
Silvermyst in reply to Jaxqueline

You too Jax :)

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