I have only just joined up and have loadsa questions....

[fruitpastle]

Hello guys iv just been told i have mixed connecting tissue disorder with signs of limited scleroderma.Ive been having problems with my voice they say its due to silent reflux. Ive been hoarse from june this year and have been given gaviscon and told to raise my pillows at nite to stop acid traveling up into my vocal cords. I was wondering has anyone else this problem.Ive had problems swallowing and i think that my oesophagus is inflammed Also everyone talks of flare ups i was wondering do we all have the same flare ups and if so what are they? I suffer from swollen right foot and feels like its on fire i can not walk or even touch it against something it hurts so bad and also a swollen right hand it happens every couple of wks its never on my left side. My elbows both stick or lock and i cannot straighten them r even bring them up to my face.Does this happen with everyone that has this immune disease.I wud love to speak with someone who relates to any of this.

I have only joined this chat page tonite as iv so much i want to know.

Thanks

[JemimaDoll]

Hi Fruitpastile. Yes, there is so much information to take in when you are first diagnosed. Are you going to a specialist in scleroderma? Are you in the UK? They should be giving you check ups every 6 months or every year. Everybody is different with this condition, and has different symptoms, although it seems that some symptoms are more common than others.

I was diagnosed 15 years ago and have probably been on Omeprazole for at least 10 years, for my reflux. (Many people with scleroderma are on this) . Omeprazole is stronger than Gaviscon. I take 20 mg in the morning and 20 mg in the evening. I also wait 4 hours after I have finished my evening meal, before I lie down to go to sleep. This is really important. I find that if I eat a spicy or Indian meal, which is only occasionally, I need 6 hours before lying down. I also avoid things like orange juice or tomatoes with an evening meal. I also have 4 pillows to sleep with. I find that doing all these things together means that I can really manage the reflux well. So my advice is to try all of these things, and see if they help you. You can look at the Raynaud's and Scleroderma Society for info and they have a great helpline. Also, with the other symptoms you mention, you can talk to your doctor about them. I hope this helps a little bit. Lots of luck and good wishes.

[danacetz]

For the longest time I avoided reflux medicine because I hate taking meds and thought I don't have any signs. I never realized that hoarse throat was a sign, More importantly, no one told me taht acid reflux can be atypical and that constant erosion can lead to throat cancers and esophagus strictures.

[overnighthearingloss]

I get acid reflux and take Gaviscon as well. I take some as required. I often get it following meals but also if I havent eaten anything and my stomach is empty. I have had the hoarse voice as well on occasions

[tinaparkii]

I take omeprazole and it has been a god send as I was waking up every morning with reflux and was so scared I was gonna end up chokin. Thinking I was bein sick and swallowing it in my sleep. Never suffered this since been on these.

[Dionne-F]

Hi I have scleroderma, I am on various drugs, omneprazole for heartburn, edotolac for swelling, tramadole for pain in joints, losartan for high blood pressue, I was on nifedipine also for BP and raynauds but now I have yearly infusions of iloprost and this seems to help at the moment. This is a disease that's subject to change, and it's important to have a sympathetic dr and specialist. There are many products to help, including silver gloves and socks, and zippo type handwarmers, which stay warm for up to 12 hrs.

Fingers splitting can be helped by good moisturiser, for this I use doublebase, available at amazon. Also keep them warm and mobile.

I hope all this has been some help, drop me a line if you have any more questions.

Dee x