scared and lonely

[volvox45]

I was diagnosed with limited systemic scleroderma 2 weeks ago (I'm 72) – my only symptom is Raynauds and also a complete change in bowel habits and weight loss which no one has yet connected to the SSc but I'm sure it must be. Various scans etc tell me my oesophagus and lungs are damaged (bronchiectasis), and I am to have my kidneys and heart investigated. I feel like my body is destroying itself from the inside which is terrifying. Whatever will happen next? I have lots of questions but won't see a consultant for at least 3 months.

One is: why is it called "limited"? Will it always be "limited" or will it spread? Then what will it be called?

Just wanted to have a bit of a wail really! This is a lonely disease, isn't it.

[volvox45]

... and why has my post appeared on the lung foundation site when I wanted it on the scleroderma and Raynauds site???

[Hidden in reply to volvox45]

Maybe automatically linked as you mentioned your lungs and bronchiectasis volvo..take care

[wheezyof in reply to volvox45]

That will be the bronchiectasis xx

[Hidden]

Keep asking the medical people volvo keep pushing and pushing to you get the answers you require don't be put off..but in fairness they can't answer if we don't ask.Ger

[PMRPete]

Some of the best info here:-

ghr.nlm.nih.gov/condition/s...

[sheila1kerry]

I read your second post and it explains why i had no idea about the illness you mentioned.

I think most illness is a lonely place to be, that is why these sites are so important. You know some days when i am moaning to my family about how i feel, i see their eyes glaze over, not that they don’t love me, they just can never understand. Only someone going through it can understand. I hope you get some answers to your questions and find some comfort in speaking to others in your position.

Wishing you the very best xxx

Sheila1kerry

[Izb1]

Hi volvox45, sorry to hear of your worries regarding this illness. I dont know anything about this condition so cant advise you. Just know that there are people on this site that care about others and will give you as much support as you need. One thing I have learned from this site is to remain positive, it will help you get through the dark days. Take good care of yourself. Irene x

[wheezyof]

Hello volvox45,

Did you have a penfriend when you were younger? Well you've lots of us now. We are like penfriends except you don't get to save the stamps.

We may not be able to help with your exact health issues but we can listen, we can give you ideas that may help you.

I know with Raynauds it helps to keep your wrists and ankles warm, sounds potty but it helps. Trying to avoid handling things like frozen food unless you are wearing gloves helps too.

If you have to wait so long for a specialist, try asking your GP for more information.

Good luck xx

[monju]

Please don't feel alone. If you ever need someone we are all here to help you. If you need anything please msg me. Keep safe and stay healthy.

[lKeith]

volvox45

Hi, sorry to hear of your ailment Scleroderma, cannot help with the use of "limited" but there is a website that can probably give you more information, symptoms side effects what else is effected etc.

As to Raynauds, I've had this for years and managed it thro' winter and summer. It's always worse in the winter with feet and hands freezing up together with speech (Which just stops). I now have severe emphysema which means I cannot do very much so the hand/feet problems don't come around as often. I still do feel the cold when on my electric scooter, being inactive is probably worse, I freeze quicker, which pleases my partner as I don't speak either.

Look at the web page for info but you could always try BLF nurses who can point you in the right direction.

IKeith

[Posative]

Sending you a big hug volvox45💓🌹

[Caspiana]

Hello volvox45 .

I am very sorry to read about your circumstances. I do not know anything about systemic scleroderma , but I do know about Raynaud's as I have Rheumatoid Arthritis, and Sjorgren's syndrome. Raynaud 's thought it would join the other autoimmune disorders in my body for a party. 😞 And yes, because of all these , I know what you mean when you say it feels like your body is being destroyed from within.

As for not seeing your doctor for the next three months, if you feel very worried, could you not make an earlier appointment? I can't think of anything worse than fretting for all that time.

You can wail, stamp your feet and gnash your teeth on here all you want. You will always have a sympathetic ear. 😀👂

Thinking of you,

Cas xx 🌸🌻🐬