Living with scleroderma

[Tollie]

Hello, I have been diagnosed with raynauds since I was about 26 years old and around 30 I also have scleroderma. Since I was about sixteen I new something was wrong but it wasn’t till much later it had a name. The reynauds affected my hands and feet and swelling in my legs. But the scleroderma is the worst since knowing of my scleroderma my skin is tight and I have spots all over dark and light I lost my left kidney and my stomach and lungs are affected.

[GGhere]

Hello Tollie, sorry you are having such a tough time. I too have scleroderma, raynauds, and all the rest of the rubbish that comes with this disease. I still have two kidney but function is reduced and the hospital does regular checks on my other organs i.e. heart and lungs. I also have the dark and light patchy skin. I find I can't stand to wear makeup any more as my skin is uncomfortable and my eyes protest by getting all itchy if I wear eye makeup so I'm a bit of plain Jane these days with skins that's all shades. BUT I keep telling myself I woke up this morning and that's a plus. I hope you are not feeling too down and that you manage to have some "good" days. My consultant always tells me, we can't cure it but we can manage it. It's a matter of finding out what suits you and helps you feel more comfortable. Very best wishes to you and a hug.

[Tollie in reply to GGhere]

Thanks I do have some good days always in pain but it’s manageable. The scleroderma have taken my nose it’s smaller my lips are almost gone my teeth are showing and mouth is dry a lot because when I am relaxed I don’t remember to hold what lips I do have together. My doctor just this month told me the treatment for my lungs is toxic and I was reading on here where a couple of ladies had to have chemotherapy that scares me and my stomach the medicine for it can cause heart problems. So far my heart is the only thing not affected yet.

[Cole57 in reply to Tollie]

Hi Tollie

After reading your post my heart hears you loud and clear. I to have Raynauds and I have Diffuse Cutaneous Scleroderma. So I know too well how you feel and what pain your in daily. I had Chemotherapy after all the usual immunosuppressants failed to work. After a year of having the disease they found my heart was infected. Thankfully I’m seen by a great cardiologist and hypertension team. I had to have further chemo for my heart but unfortunately it didn’t work. But what I would say to you is I always say I have nothing to lose and you never know what drug might work. I have kids and will try anything that might stop or just slow the progression down. I’ve just had two infusions of Rituximab and I’m hoping this will calm the inflammation which is ravaging my body. Talk to your Rheumatologist and even like your doing talk to other people on this site to see what success they have had with particular drugs. But don’t give up and take each day as another new day. Hopefully you will find something that will give some relief. Thinking of you😘

[Tollie in reply to Cole57]

Hi Cole57

I am really sorry to hear that you’re been through so much. I thank you for sharing with me. This is a lot to deal with but I am thankful for each day. My rheumatologist is going to talk to me about different treatment for my lungs stomach and the mussels in my throat are almost gone. Do you have difficulty swallowing as well. I see a digestive disease doctor and Poluminary doctor as well.

[Cole57 in reply to Tollie]

My swallowing is changing slowly. I have acid or liquid that pools in my throat and was seen on my Chest CT. So all the indigestion meds are only doing so much. I’m due another throat scan in the next month or two.

But how do you cope with having poor lungs? Were your Lung function tests really poor? Mine have decreased in a year from over 100% to half of that. But the lung tests came back clear and they believe my lungs are being compromised by the muscles surrounding my lungs. Like me do you find it hard to breath? Are you on oxygen therapy?

[Tollie in reply to Cole57]

My last lung test wasn’t good I was not surprised because I could tell it was hard to breathe more than usual. My primary doctor thought I had asthma but it’s the scleroderma he had me on inhaler and a breathing machine. I have more pain on my left side and they are going to wait till they hear a crackling sound on my lungs before serious treatment. So I go back in July to take test all over again but the inhaler and machine don’t stop my coughing my throat is sore I try to eat early because if I don’t I can’t lay down or my food rushes back up and I cough bad and be really sick my stomach doesn’t close all the way so the acid rushes up and be about to choke me so my has to be slanted

[Cole57 in reply to Tollie]

Omg you sound exactly like myself. I have asthma and I’m in inhalers but like yourself they no longer work so I cough all the time and wheeze heavily at night. The inhalers are just supposed to provide some relief but are useless for the breathlessness. I hate going out because simply walking is hard work and every few steps I have to stop. Small inclines are torture. Trying to get air into my lungs and constantly double breathing for air is horrible.

Like you at night if I eat even one tiny piece of chocolate too late I can guarantee it will choke me to death all night🤣. The acid just fills my throat and mouth to the point of wanting to be sick. I sleep with 4 pillows and an orthopaedic one because my neck skin is tight and causes me serious neck pain. But like they all say on here smile and wave, smile and wave. Crying is just way too easy even though some days I really want to.

Yearly test time for me is over the summer as well. Where you wait for the results hoping and praying that there’s not more bad news. But we will plod on and hopefully find that something that eases things

[Tollie in reply to Cole57]

Yes we do have a lot of the same thing going on. I am so to hear your breathing is very bad mine is too but I can still walk I get tired but I can go to the store and pick up a few things but when I get to the truck I sit down a little while and get myself together before I drive back home. Also my lower spine is deteriorating which gives me low back pain and and I pain in my legs so I when support to help the blood flow to my legs and feet I also use support gloves my fingers be so sore sometimes it hard to button my shirt. I have bad pain in my joints my shoulder my elbow hips my knees my ankles my doctor says I have fibromyalgia as well yesterday was tiring I went to sleep early I can’t have like Aleve or medication for inflammation because it could cause internal bleeding because of my stomach.