Besides Raynaud's, if you also have l... - Scleroderma & Ray...
Besides Raynaud's, if you also have limited scleroderma (previously called CREST), please indicate which symptom causes you the most problems on a daily basis.
RSA_Hannah156 VotersPlease select one:
Never been formally diagnosed with CREST but am always being told that the swallowing difficulties I experience are caused by Raynauds & scleroderma, both of which I have been diagnosed with!
hope my vote doesn't distort your figures.
Hi Ruth - CREST is the name that was used in the past (and often still is by many doctors) for the limited form of scleroderma. One of the symptoms of this is difficulty swallowing. They changed the name from CREST to acknowledge that there are other areas involved than those indicated by CREST (Calcinosis, Raynaud's, Esophageal involvement, Sclerodactyly and Telangiectasia).
hi Hannah, i would like to talk to other people with crest. I am new to this.
crest syndrome,i find swallowing and digestion is very difficult,telangiectasia it feels like little burns i have scars on my fingers. bowels are a nightmare i take 38 tablets aday i can go up to five weeks trying to go to the loo.my dr is trying out another drug to help me go. i have more then crest syndrome i have four other illness
I have had limited systemic sclerosis for very many years. My bowels cause me the most problems, or is it the pain on walking, reflux or many other things. No, I think it's my bowels, the bane of my life.
Hi Zenabb, I have been told I have limited systemic sclerosis, I have bad reflux & oesophageal dysmotility. Bowel problems started early last year & slowly getting worse, always first thing in the morning on waking. I have been keeping a watch on what I eat and drink but have been unable to find any connection. Decided 5 days ago to stop taking the Omeprazole and for the last 4 days haven't had any bowel problems at all. Could be just a coincidence but I hope not. I'm suffering with bad heartburn and reflux now so will see how it goes. Anything is worth trying to get to the bottom of it. (sorry about the pun)
Hi there! i have had limited cutanious systemic sclerosis for a number of years,it did not cause me too many problems in the early stages,but it has progressed to such an extent that i have lost all of my fingers on my left hand(i am left handed......TYPICAL) i also have very bad oesophageal dysmotility,and i have it so bad that i have recently been in hospital with a ruptured oesophagus and i lost quite a lot of blood (this was the third time that this has happened since diagnosis)and earlier this month i was in hospital again because i had got severe pneumonia brought on by pulmonary hypertension for which i have to attend the royal hallamshire hospital in Sheffield for treatment,so everything about crest syndrome causes me problems,but the biggest problem has got to be my damaged hands,(i didn't mention that my right hand is rather damaged too, raynauds i think).So,if you have the same problems as me,i would say to you,we all know this illness is a potential killer,but concentrate on living,and forget about dying,that will happen to every one eventually,so enjoy life the best way you can,and god bless you all.Lots of love,TIM.
Hi Tim I loved reading your answer so positive! I also have lost all my fingertips so know how disabling it is. I have scleroderma and have had for 12 years now and have had many problems but agree that my hands are the worst. How do you cope with going out in public? I've had artificial fingers made for me but they were twice the size of my hands and stopped me using my hands at all!
All the best Suzy
Hi Suzy,how wonderful it is to hear from you,you ask how do i cope with going out in public,i can tell you i go to any places i like,and i do not try to hide my disability at all,i do tend to get strange looks from people,but i just stare back at them,and if they continue to look at me,or my hands,i then ask them if they have a problem,and i sometimes get people who ask me what happened to my hands,and they usually say"i thought perhaps you had trapped your hands in a machine"but i tell them no,my fingers simply rotted away and had to be amputated,but i do not play on my problems i just get on with things,it is nobody's fault that i am the way i am,so i just try to live life to the best of my ability,i am happy to meet with other people suffering in the same way as me,if anyone would like to meet me,i will make arrangments as necessary,well Suzy,i am starting to wonder away from the subject,but to sum up,i do not have any problem with going out in public,take lots of care now,hope you are not in too much pain with the awful weather at the moment,all my love and best wishes,Tim.
The survey is very interesting. Thank you all for sharing. My struggle is Calcinosis. I get calcium deposits all over my fingers, so that coupled with Raynauds, makes for some difficulties with hand usage. Sclerodactyly would be next, followed by oesophageal dismotility. I have bowel issues, but it is sporadic so ends up the list.
As difficult, frustrating, painful and annoying this disease is, at least I can still live and exist. It may be with some difficulty but at least I can still eek out a somewhat normal life. I try to remember, things can always be worse.
Hang in there everyone!!!! =)
Luckily I am not in so much of a problem as it seems some are, even so Raynauds still gives me difficulties. I am on painkillers which are helping to keep the edge off daily finger and feet pain (joints can be really bad at times) until it gets as cold as it has recently. I get reflux and bowel problems also so each day can be challenging. This does not stop me thou. I have had joint and digit problems since a child and am now 45. I was formally diagnosed while half way through doing a degree, it put pay to me doing my dream job as an archaeologist but still try not to let it beat me. When I was diagnosed, the specialist recommended that the local NHS supply me with heated gloves and socks, on the day I was to get them supplied, they phoned me and said they wound not give me them 'due to risk of electric shock', made me laugh how they think AA batteries would do that.
i took ibs raynauds and optical neuritis all symptons appeared about the same time
I have all the symptoms of CREST,but it is definitely the sclrerodactlyly that causes the most trouble because i cannot do much to relieve it,the esophageal dismotility causes terrible problems,but that can be controlled using medication,as can most of the other symptoms,but not the sclerodactyly.I was diagnosed and confirmed as suffering from CREST in 1995.Regards to all,TIM.
Bowels and fatigue annoy me most. 
Moderation team
