I have CREST (limited Systemic Sclerosis) suffering gullet spasm recently is this normal?

Last night the paramedics came out as I was presenting with cardiac symptoms, they checked with an ECG & all was well. Does anyone else who has CREST suffer with this type of spasm - it was very frightening & I don't know how to help myself with this It only happens at night & I have experienced several episodes in the past 15 months. At the moment feelingf very fed up of the disease & wonder what other surprises it has in store for me?

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  • I have found over the years that with this condition you have to pay very strict attention to diet, diet and diet again.

    Every single thing you put in your mouth can cause a reaction, good or bad. You have to constantly ensure that you are providing the optimum fuel that your body requires. That means trying to eat and drink as close as nature intended on a pretty permanent basis.

    Any deviations have to become the exception rather than the norm for successful ongoing control as your body has already suffered damage in some way.

    You have to ignore tv ads for one food stuff or another and concentrate on preparing meals from scratch in order that you can have better control over what you consume or how it has been prepared.

    I believe that a number of crisises I had in the past may have been due to eating food fried in oils I no longer use.

    These days I use oils more sparingly and most often only extra virgin olive or flax oil. I try to self prepare the vast majority of my food in order to be able to keep a tighter control. I find it is more preferable to try to prevent a crisis, if possible, than to deal with the unknown consequences if one hits.

    I start with as close as possible to raw ingredients as any prepreared foods may include unknown items such as hydrogenated fats or sweeteners that my body may react to.

    In saying food, you must also think of fluids, anything that you put in your mouth. That also includes any meds which can also sometimes cause issues.

    Its all a learning process.

  • hi,i also have crest sd, mind i have tunous calcification. excess valium. i have lumps every where. maybe i should diet because i am obese but i have so much cronic pain i just think thats all i get out of life is something good to eat. maybe thats wrong but i enjoymeating cooking if i can. i have so much pain I'm on pain meds, i can't do much. do you have pain. dr. has me on meds called kinnett. my hubby gives me a shot every morning. i have only been on it 3 months, i don't see much where it is helping. god i pray for a cure, this is awful surfing decease. love to talk, god bless you, i am 67 woman. thanks webbie

  • When I mentioned diet I wasn't suggesting calorie controlled but calories would possibly be controlled indirectly by controlling sugars and fats.

    I find that if I eat a wide range of foodstuffs that are not from a packet, box or tin I generally manage better. Meals can still be simple but in my opinion are more nutrious which is beneficial. They also tend to be less likely to contain inflammatory ingredients which cause so many additional difficulties

  • I have been on a non grain diet for 4 months now - this is meant to help

  • thank you so much for your reply :)

  • I have amongst other things that have been caused by Scleroderma slow motiity of the gut, and have experienced the symptoms you have had. I am on medications such as Ranitadine, Pantoprazole. and Domperidone none of which seem to directly help. I have found that it's not so much what you eat, but how much. To stop getting that really uncomfortable feeling it is better to eat little and often, and definately not after about 7 at night. Best wishes.

  • Hi all,

    I have diffuse scleroderma and have had spasms in my tummy too. I have been dieting with Slimming World as my liver has non alcoholic fatty liver disease due of douse to the steroids I have taken for the last 13 years. I have never bothered before as my rheumatologists always like a bit of something for you to fall back on if you have a crisis. I have found though that I am generally much better in myself, I have loads more energy and have come off some meds for my stomach. Basically it is using good ingredients, cooking from fat and being healthy. I no longer have cooking fat I use fry light only.

    I look after myself as I have three children of school age.

    I hope you feel better soon, please stay positive this is very important with scleroderma.

    Let us know how you get on...if it continues go back to your GP, be persistent and remember as my GP once told me it might be something else. Ask to see a specialist and also contact the scleroderma nurses jointly funded by the scleroderma society and Raynauds and scleroderma association, both great sources of friendly and specialist advice.

    Keep warm and best wishes to you all.

    Helen

  • Sorry to hear this. Hope you are feeling better today. RSA.

  • Hi there. I also have CREST. I have phases when I wake up choking which can be a bit of a scare. I also had an episode where I thought I was having a cardiac event while driving, with left chest pain which radiated to arm and jaw. I was close to hospital so went to A &E, like you it was an oesophageal spasm. They are scary but you will have long periods when it is quiet. I take omeprazole and am careful not to miss any.

  • Yes I do, my ECG was satisfactory but my pulse was very fast. I had a visit to A&E and they suggested that I see a cardiologist. It's very frightening when it happens and it keeps me a wake at nights. Just inform your consultant and GP.

  • Hi Aliw, I agree with Overnighthearingloss. I have had this particular problem for 2 years now, and it is basically down to listening to your stomach.

    I used to like chips (stomach not like), crisps, biscuits and many more. Through trial and error your stomach will tell you what is acceptable and what isn't.

    I have a tear in my stomach and a damaged orsopheagus , and I have suffered the same ordeal when you have an attack. Most of the time the Meds work but occasionally you get these terrifying attacks, always in the middle of the night.

    Over a period of time you will get to know which foods to eat and which to avoid, your trusty stomach will tell you.

    When I have an attack in the middle of the night I always get up and have an Omeprazole and the attack eases and disappears after about 30 mins.

    It's a question of being careful of what you eat and drink and the subsequent reactions of your stomach. Hope this helps.

    Take care.

  • hi everyone, do you all have chronic pain. i wake up in night with awful burning leg pain. my bones feel like a lot of burning,. god i wish dr. would help me. do any of you have this with scleradoma. how can you stay positive with this pain. lov to talk belle

  • I su ggest that you see your rheumatologist as aoon as possible to understand what is going on.

  • Thank you for all your posts - I appreciate your support. I am dreading another endoscope but I guess this is the only way to see what's going on - Can stress exacerbate symptoms do you think >?

  • Hi all I have raynauds and scleroderma, I only sleep for a few hours a night does anyone else have this problem, I am so tired most of the time and don't feel like doing anything or going out

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