flare ups

hi guys id like to know are our flare ups the same does everyone with limited sclero get swollen red feet and hands with unbelivable pain and also do any of u take anti inflamatorys iv been on them for 2yrs and worried incase these r the guys causing reflux?

its all so new an confusing and iv no one to talk to at home cause they dont understand any of it.

7 Replies

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  • Hi,

    I have limited sceleroderma and I have only recently been diagnosed in the last 8 months or so. I get swollen hands and some pain in my joints, but not too bad at the moment. I have been taking tablets called Lansoprazole for reflux and these are amazing and even over the Christmas period with overindulging haven't had reflux.

    I also find it all hard to understand, I suppose it's taking one day at a time and looking after ourselves which is one of my New Years resolutions as I haven't been at all.

    I also met someone when I was in hospital having treatment for severe rynauds who has similar condition to me which is really nice.

    Hope you feel better soon, rest when you can - I know that is hard but it does help when you are going through a flare up.

    Take care.

  • Hi emily

    ta its just hard tryn to understand all these flare ups people speak about but no one ever says what a flare up is..is it when ur foot r hand swell and u cant walk.i wondered do we all feel the same? also iv only been told dec 20th that this is wot i hav but iv been this way for 2 yrs . also just out of curiosity what age r u i am 45 but a young 45yr old never been sick until all this came on.im also on lansoprazole plus gaviscon at nite but what my doc seen was the bottom part of my gullet wide open which is why my voice is hoarse as the acid is traveln up and irritating my vocal cords.. this is all mad as everyones prombels r all so mixed and hearing other peolps storys about this limited scleroderma and how bad they have got it scares the .... out of me i have two wee boys aged 5 an 7 i cant do the buttones on ther school shirts im always dropping things. refulx i have is silent how do u know if u havent got it with these tablets do u feel any different ? i didn even know i had reflux until my doc had a look inside with camera then told me my gullet was open and i had fluid on my vocal cords. im so afraid to eat anything incase it adds to the acid and damages my cords any futher sorry for big long message just wish i cud sit in a room full of everyone who also has this and can help me understand.and then i cud see how they were.

  • Hi n happy new year all,,

    I agree ive been in hospital loads and only ever met 4 ppl with raynauds and 1 lady aged 81 with scleroderma,, b good to speak with ppl fighting this disease.. ive had secondary raynauds since i was 19, scleroderma since 22 n im now 38. I have 4 children n as u find things hard n its the easy things that can be more frustrating!! i go ion 14th jan for my ilprost,, works for about 3/4 week. 1 finger amputated 4 year ago n the rest are bent scared painfull, x

  • With the scleroderma you will have reflux as part of it .As food pipe gets stiff .

    You will also have reflux due to taking anti imflamties .

    You need a tummy potcter and need to stay on it all the time .If you still have the reflux then you need to double the dose .You need to be on all the time as acid does damage ask your Rhumalosit .And you need it on your repeat and the gp will ask you too come off them but the acid reflux won,t go away .So it on forever .

  • thanks guys the lansoprazole is the tummy protector for the anti inflamatories.. do u think if i came off the inflams that hands and feet wud swell worse..have any u guys came off them to c if theres any difference? sometimes all these things we take r the reasons that we get other things and cookie 74 did ur fingers just start as paper cuts then become ulcers? or is it the tighting that cause a finger to be amputated tell me please how this happens im sorry for ur pain i am new to this and its alot to get my head around x

  • We do have recurences. but people receive different treatments. See what helps YOU and keep to it. I am 83 and I am still here. I get very frustrated by my limited handskills but I soldier on, the reason being that I need to be occupied to forget my problems. It works. I worked till I was 72. I am still busy as a member of the U3A (the University of the Third Age) and I am leader of a HUMOUR GROUP and national co-ordinator of Humour Groups. I have to have rests but I keep as busy as possible. When I am bored I feel all my aches and frustrations. What we have is a lifelong condition and we have to have a life. Beat it as far as possible.

  • Yes flare ups can occur in scleroderma. How, when and why is still a mystery. They may be caused by stress or medication and if it is the latter then it is worth talking to your consultant as a change of treatment may help. If you want to chat to someone with the condition who is going through what you are going through, then call 01270 872776.

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