Is it worth doing 'internal stretch' or muscle exercises?

[LadyTrundle]

Hi - a strange question perhaps. When diagnosed with Limited Systemic Scleroderma a year ago, I was sent info sheets with hand stretching/ flexing exercises and the need to do them often was reinforced in verbal advice. I am now aware I am finding it hard to swallow some things more often so I wondered if there is any logic to thinking 'singing' (I'm not a singer!) or gargling/ other throat exercise might hold off those symptoms for a while? Ditto with doing deep breathing exercise and a link to keeping good lung and heart muscle tone? Or am I clutching at straws?

[trunchalobesity]

At The Royal Brompton Hospital the nation centre for lung medicine, they have singing therapy and choir x

[marie5454]

Hi, I think anything that can help you in any way is a good thing, this site is great for sharing things that others have tried, different things work for different people and it doesn't matter if you can't sing, give it a go and the breathing exercises will help a lot too, good luck, take care

[positivedaybyday]

I would agree, any type of exercising will help in the long term.

I have been doing hand exercises for 4 years on a daily basis. Although I often lose my grip I believe it has helped slow any progression of claw hands.

I undertake other exercises daily using hand weights to strengthen my muscles & bar exercises to keep my leg muscles.

I do mouth exercises daily to aid restrictions in the area.

Added to this I walk for over an hour each day.

I have acute diffuse systemic sclerosis.

At the beginning of my journey 4 years ago, I lost a stone in weight & muscle loss across my body. At that point I had difficulty in walking.

It's taken 4 years but definitely beneficial.

Sometimes I have heart palpitations & deep breathing helps reduce this strange feeling.

I've not tried any exercises to assist with swallowing, I'd give it a try.

I have adapted my diet as certain foods e.g toast/boiled eggs cause issues with the swallowing process.

Good luck! Xxx

[LadyTrundle in reply to positivedaybyday]

Thanks for this - I was running away/ feeling frightened of certain foods, but your common sense 'adapt my diet' put it back in perspective! I'm glad you've been able to build yourself back up over time.Worth it.

[Lichfield]

Hi,I’ve been a member of a local ladies modern choir for a number of years.

I’ve recently been diagnosed with Limited Scleroderma which has affected my internal organs one of which is my lungs.

It really is a good therapy , I’d definitely recommend it to anyone.

Not only that it’s so uplifting.

Take care x

[LadyTrundle]

Thank you to everyone who has responded - it is encouraging to know that I'm not completely daft and that it is worth trying these things. I hope I'll keep up your attitudes of doing all I can to hold things at bay and enjoy life in the meantime.

I do lots of regular stretching daily (initially because of a massive pain condition in my upper back that seems to ease by osteopath-guided stretching) and what with hands, face, feet, hamstrings and back, take a couple of hours to properly get going in the morning! I aim to do something aerobic each day too. Though fail many days due to time.

As my singing voice/ tone is so very bad, maybe I'll have to start going to a hymn-singing church again (on the basis people there would be too nice to tell me to shut up!!)

For deep breathing (as well as for calming and meditating) I've really got into Qi Gong and Tai Chi. I've found the you tube videos of these two people very good and easy to follow:

Lee Holden ((Qi Gong) youtube.com/watch?v=pj4qo2K...(Not working as expected?) (my morning routine!);

secure.holdenqigong.com (his website);

Or type Lee Holden qigong into the You Tube search and scroll down past the adverts for free videos of different routines.

Tai Chi - Leia of Taiflow

youtube.com/watch?v=cEOS2zo...(Not working as expected?)

and taiflow.com/taiflow-signup

Good luck to everyone here.

[Poppy221]

I have limited systemic sclerosis and used to have trouble swallowing things, especially drier things, but it turned out that most of that was due to inflammation of the gullet caused by acid reflux. Once the acid reflux was sorted out (lots of esomeprazole, sleeping on ramp, not eating and drinking only very little within three hours of going to bed) then the swallowing problem went away. Are you being treated for acid reflux? It is possible to have it in milder forms without it being obvious - some spillage up the gullet without it reaching the mouth.

[LadyTrundle in reply to Poppy221]

Thanks, good points - I've been on omeprazole for decades, had the dose doubled in the last year when I mentioned problems swallowing. I don't experience actual burning or reflux very often (sometimes cold water can cause it!) but have also taken measures about timing of eating, avoiding somethings and sometimes raising the bed head. Now I think about it, I used to go to sleep sucking on a Gaviscon tablet, but had run out recently. Also in a similar period that I've noticed the swallowing as much worse I was prescribed Loperamide for the other end ... I wonder if either of those has caused more acid inflammation? I will play around!

[Poppy221 in reply to LadyTrundle]

There is an older medication also for acid reflux that you can take overnight. Trying to remember its name - I think it had H2 in the name and is actually an antihistamine. It was recommended to me over a year ago, but was unavailable at the time due to being manufactured only in China. This is a roundabout way to suggesting asking your rheumatologist or gastroenterologist about additional medications, and just perhaps an endoscopy to see what is really going on with your gullet. Telling them you are struggling to swallow and the impact it has on you - pill taking? eating? might be worth it.

[Poppy221 in reply to Poppy221]

OK, found the info, it is "H2 blockers are a group of medicines that reduce the amount of acid produced by the cells in the lining of the stomach. They are also called 'histamine H2-receptor antagonists' but are commonly called H2 blockers. They include cimetidine, famotidine, nizatidine and ranitidine, and have various different brand names. " My rheumatologist was suggesting taking them at night, in addition to the PPI - once they become available again. Don't know if they are, as my GP has been asked several times and never answered. As I'm OK at present, I've not spent energy on chasing it.

One other thought - have you changed what you are doing, especially exercise recently?

Earlier this year I had a recurrence of trouble swallowing - relatively mild - and after a week or so realised that I'd recently started an exercise routine - quite a gentle one - but it included an exercise where I lay on my back and lifted my hips up - so I had my stomach higher than my gullet and was tipping acid down it. Stopped doing the exercise and everything cleared up in a week or so.

[LadyTrundle in reply to Poppy221]

Wow - fantastic of you to put so much effort into helping me! I'm next talking to the GI consultant in November, so will ask about the other drugs. Yes, I have gastroscopies regularly and they mostly shown only very mild inflammation. Also a hiatus hernia. Maybe I'll need another one this year.

And yes, I have been slowly upping my exercise regime, some of which involve lying on the floor. So I'll monitor that. The problem has been a little easier the last couple of days, since people prompted me to realise about the Loperamide and stopping the gaviscon. I fell much less panicked!

[LadyTrundle]

To all those who encouraged me about singing - I was warbling Christmas carols (the only thing I can remember the words to!) to myself on my walk in the fields yesterday. I enjoyed it and no one was near enough to be offended