Sticky Blood-Hughes Syndrome Support
8,096 members8,337 posts

Do you follow a regular exercise programme?

I have tons of weight to lose. I am feeling pretty low. I thought some exercise might be a good thing for both weight and mood. My drs seem ok with this. But I am realising that drs don't always know all there is to know about Hughes and you guys seem to help me more as you are living with this day in day out.

So what do you think?

My husband and I went to three gyms yesterday and spoke with the staff and then made a choice based upon which one was most concerned about my health needs. If I do sign up I shall be going very very slowly concentrating on the walking machine to start and maybe a pilates class to help with inner core strength as my balance can be poor. On good days I'd also like to go to a dance session just for the fun of it.

I know I could just go for a walk around my home area but I am scared of being ill on my own whereas at least a gym is a more controlled environment when I feel vulnerable. I am at the stage where if I leave it much longer I may lose my mobility or at least my confidence to have a go.

I'd love to hear your experiences.


10 Replies

I do what I can at home, in twenty minute bursts, but some days are better than others, I think you have to go with the flow.. and do what feels best for you, you may find that you need one day on one day off, and pace yourself rather than boom or bust. I do find, that if I can build up my exercise.. (it often gets taken away for me for a while with infections etc), that my stamina, sleep and everything improves a bit, but it is challenging nevertheless! I do keep trying though, and managed recently to go swimming several times in a row and felt better for it. Over time, it will help your mobility, but it may be difficult to start with. Good for you, dance sounds great! Mary F x


Thank you for your encouragement Mary and the sound advice. I often have "blips" lasting up to two weeks when I can do very little physically or mentally. This stop/start approach to life is frustrating as you are forever starting all over from the beginning again! But I really do not want to just give in.



Hi Lynn

I go cycling when I can - I used to be a racing cyclist - but this year has not been so good for me, with weather, either too cold, too wet or too hot, and clients' work too.

I'm on holiday soon and will take my bike to Shropshire with me.

Best wishes.



Hi Dave:Just out of curiosity - have you experienced Tour de France? I only ask because my nephew is a professional cyclist and did the Tour about 5 years ago I think (My time gets skewed). It's a small world, you never know.


Hi. No, I just did time trials in this country and not very well either. lol Dave


Hi Stillwaiting:

Exercise was the best medicine I have. It helps greatly. Mentally, physically, spiritually. After I had my stroke my coordination on the left was very bad. I began on the treadmill at 5 min. Yes. That's all...5 minutes at 2.5 miles per hour.Every day I added just one minute. Just one more minute to get through at a time. When I felt comfortable at 30 minutes, I raised the speed to 3.0 mph and kept adding 1 minute mileage a day. At 45 min, I upped the speed again to 3.5 mph. (Mind you I am hanging on for dear life with both hands and still at a WALK not even a trot.) I did this for over a year. Walking gives you fantastic glutes! Then about 3 months ago I woke up and my back was out. Took an x-ray as the pain was unbearable. Dx was spondylolithesis of L4-5 S1. I've been on back exercises since. The TENS unit really helped with pain in the lower back. Works like white noise.

Now I am just getting in a frame of mind to begin walking again on the treadmill. I'll start just as I did so many years ago. If it hurts STOP. If you can, get yourself one of those necklaces that directly connects you to emergency services it solves your "alone" problem. That way you can walk outside if you want. Here are some sources for you.

The one I recommend is from AARP. "My Generation". Copy and paste the above into your browser and I think it will give you a whole page of resources for emergency necklaces. Anyone as ill as we are, should have some sort of emergency device that immediately connects them to emergency services. One with a GPS.

You have quite a hefty schedule set out for yourself at the gym. I think it is just too much. Test your exhaustion level first. Personally, I won't go to public gyms because of germs (the downfalls of working in Infection Control at a hospital). I feel the same or stronger about aquatherapy - but it is the absolute best therapy that has helped the most, the longest with best results. Ask your doctor for a physical therapist who will develop specific water exercises for YOUR specific pain. After the pool, even though we all want to stay forever (it's a little warmer than a regular pool) they will design bath exercises you can do at home. If you can afford it, a big soaking tub is heaven and makes water exercises at home easier. If you have a hot tub, that works well too.

I, too, am about 35 pounds overweight. (Yes, I'm being kind to myself) I don't expect the exercise to help me lose weight. I need that to keep my muscles limber and movable. For weight, I am well aware it is what I put down my mouth. I have virtually no will power when it comes to food. All the wrong ones. I can stay self disciplined with exercise, my temper, other goals. But food is the way I reward myself and nothing else is better. Well, almost nothing. I've tried changing the reward but it just doesn't hit that "all satisfied" feeling.

If I were you, I'd save my money on the gym (unless you want the social company who has no idea what you go through) and test myself and my endurance at home for a month or so. I think if you invested in a treadmill your money would be better spent. To this day, I get overwhelmingly tired FAST!~ And that happens frequently. I don't even have to be exercising. It is almost like narcolepsy. When tired hits, I sit. So I don't fall. Now, admittedly this looks weird, but one minute of weird in my day is nothing.

I hope what I have learned on my journey helps you. The single most important thing? When it hurts - STOP. If you get even slightly tired - STOP. Adjust your routine accordingly

Warm wishes, Stillwaiting.



My weight started going up and being a double amputee it was causing a lot of pain in my knees. I joined a gym and started going most days. I do approx 40 mins in gym and then do approx 30 mins swim. I also cut out all biscuits and anything else fattening. I usually have fruit n fibre for breakfast, banana on toast (brown) for lunch and salads at tea time. I never eat anything after 8pm. It's worked for me and I've lost just over a stone in approx 6mths. Don't give in to the aches and pain. Good luck


I'm not sure that I can help with your specific situation but just to let you know - I am very active - I used to compete at snowboarding, I complete at dressage and show jumping (not like Burghley though!!), I walk the dogs at 5.30am and 7.30pm most days (I live in the south downs so lots of hills!), I run and cycle, zumba and yoga (I'm terrible though)..... I hope you don't think that I'm showing off - I just want you to know that once you get into your stride (excuse the pun!) you can do anything!!

Take care



Thanks Tasch - you always cheer me :)



An update:

Well I was all ready to sign up to the gym and wham APS hits again.

So I am now staggering back to where I was - it's always one step forward and a fair few back.

So yesterday I decided to try gentle exercise in 5 minute bursts. I managed 15 minutes on my exercise over the entire day. Not brilliant for most but a fab achievement for me! I am recording these five minutes on my kitchen blackboard so I can see my progress.

I also bought a dance exercise dvd from Amazon for £1 - it was recommended for folk like me who need a slow start!!

So I shall be exercising at home.

I am really hoping that this lifts my mood as I feel a bit low at the moment; I never know from one day to the next how I will be. I'm also hoping that consistent exercise will build stamina so I recover from setbacks more quickly. Thank you for all your replies - you are all so helpful :)



You may also like...