Systemic Sclerosis Scleroderma ...AM ... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Systemic Sclerosis Scleroderma ...AM I like the only one with this Night mare.. and no cure. Help I feel tormented by Everyone ...

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8whitetoes

THIS is my first post .... I have Systemic Sclerosis Scleroderma... My vocal cords are on fire .... My Esophagual spasms R Worse... I can't eat ... On the ( Boost diet) **YES I am Extremely stressed** .. can only slept sitting up...I have very sensitive hearing ... (Sleep w/ear plugs)... I developed Bladder Spasms From HELLO!!! ....

(I almost have a sense I'm not going to be around much longer....) If that makes sense....

I have Raynond's Badly , hands , feet , ears nose .... I'm on the same kinds of meds most everyone w/ Scleroderma take.. I am 1 of 2 or only 1 ... Being treated at Vanderbilt. I'm just gonna stop at this point ... The Esophagual spasms R getting TOO me right now in a bad way...... Thank you

Painted 🐺 Wolf (my Native American name)

7 Replies

There is no cure, that's right, but you can get better. I am 89 years old.

Hi, I hope you find relief soon, I am sorry for all the pain you have, Do you Pray? I know it must be very difficult for you, And I understand what you are going through, It is a lonely road you travel, but there will be an end, Just try to think of a beautiful lush green field, with all your friends gathered there waiting for you, There are beautiful flowers dotted here and there, with a gentle breeze filtering through the warm sunshine, a little trickle of a brook can be heard, and birds singing in the trees, Keep this picture with you, and go into the picture when your pain is bad, talk to your friends who are there for you, and listen to the sound of the birds singing.

I have to live on nexium. But the spasms in my esophagus are like a heart attack. I've learned to swallow air and burp I keep doing it and they stop, crazy but if it helps try it.

Hi, Cher, I am so sorry you have this awful thing, I don't know much about it, surely there must be something to relax the oesophagus? Without you having to go through that all the time, Poor you, it must be difficult, What is the disease called?

Hi there! Don’t give up. I’ve been suffering from systemic scleroderma myself as well as inactive lymphoma and pulmonary hypertension. For the last year I’ve been unable to keep food down. I also drink tons of protein drinks. I have found that cannabis is the only thing that has helped me with the nausea and my appetite. I’m now starting to gain weight again. I also want to encourage you to do relaxation exercises. Stress will cause everything in our body to shut down. Our digestive system is so susceptible. Stress causes our cortisol levels to rise, making our nervous system unable to function properly , which In turn disrupts normal digestion. It also inhibits the body from receiving nutrients from what we eat. I can’t stress this enough! No pun intended. Doctors will not tell you this. I have researched these things for years. Try the relaxation exercises. They will help. I’ll put you in my prayers!

Esophagual spasms !!! It feels exactly like a heart attack-- !!!!

This time too add too the chocking , I have Candida Fungi growing ..., in my esophagus an upper respiratory system ...., For 7 days an antibiotic by IV in the infectious disease dep. Being stuck EVER day sucks!!!! Tiny veins THAT roll, an become faint EVERY time !!!! I can't seem too get well ...., My stupid spouse keeps me stressed out ... He took away the one last passion I have *my ART WORK* boxed it up and everything I was working on is ?????????? ..... I just want to hide under a rock to never be found ....

Not to sound bad but if ur spouce is making stress for u its ur choice to stay there our love ones haft to have our backs during these hard times. I feel ur pain i also am suffering from the same probs u are i also have heart envolvment and had to have a pace maker defibulator put in. But yhe best tjing i have found is trying to keep as much stress away as poss. And keep pushing forward i to are still learning about this lovely disorder .the gi prob is one of tje hardest things to deal with cause u some time cant tell if it gi or heart prob.so my point is u haft to remember (u are #1 and u haft to take care of urself nomater what) maby have ur spouce should get on here and read some of everyone stories to show him ur not making this up and let him know u really really need him???? Just a thought .anyway goid luck god bless you durning yhese hard times.

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