Breathing

[NSV69]

I was diagnosed with scleroderma about 18 mo ths ago. Consultant has rated it as mild with minor change in lungs CT scan.

I now get pain in thumbs and ankles.

I have a slight rasping like velcro effect when i sometines breath - am i to presume this is all related to tbe condition and does it settle down after some time?

[Nurmohammed]

Hi I’m having same problem I have scleroderma sclerosis’s and Reynards since last 13 years and had Kidny problame since last 9 years I’m suffering since long time I always complain to doctors but can’t get right treatment on this illness as I ask even so many time About breathless to my Gp and they always say I have scleroderma sclerosis’s that’s way your lungs also get effective with it as i ask jp and Royalfree London doctors every Apointment they keep sending me on breathing test and test shows not bad! So I never gate any farther treatments just dr. Prescribed depression anxiety Mediation and send me to psychiatrist dr. Even they give some cd to lotion! I’m still on this treatment also send last year for more test for respratory clinic hospital when respiratory dr. Request Scen- x-Ray test after dr. Find I’m have soyLungs fibrosis is start but dr. Said is not big issue to they needs to give me gas treatment even they can’t put me on gas be coz off my Kedny transplant! And lots of meditation! so don’t know future nexts treatment! as a scleroderma sclerosis’s and Reynards and lots mor things on body connect with scleroderma which can’t help my self or doctors! So I’m Still copping if i ask doctors they keep mentioning be coz off scleroderma sclerosis’s and all other body issues!!! So When I have more problems I can’t even ask any ones to how to come out from this disease and this illness !!! Well I hope we all get good treatment and get well. Thanks.

[LilaJoe]

Hi

I've only recently had the Antibodies show up, and now have a dry cough and a bit of a rattle when l breathe and chest feels tight. I'd never had any chest infections in the past so it's very odd.

I had clear pulmonary function tests in September

I think we just have to be reviewed regularly.

Hope your breathing eases...

[NSV69 in reply to LilaJoe]

Hi Lilajoe

Thanks for the response.

I think i have got myself anxious just thinking about it which obviously hasn’t helped.

Reading up on it sounds like this is quite a common symptom.

Regards

[Maryjcl]

Hi, I have the same problem and get breathless walking up the stairs, been asking about it for ages with no real reply which makes me think they don’t have the answer either. I have systemic scleroderma and raynauds but my breathing tests always come back clear. Hope u get some answers soon xx

[Sami13 in reply to Maryjcl]

I’m exactly the same Don’t get it. They always say it’s all fine but I’m so breathless and cough a lot at nigh

[Maryjcl in reply to Sami13]

I know Sami it doesn’t make sense, there has to b a good reason why we r so breathless, it’s scary xx

[Sami13 in reply to Maryjcl]

And really frustrating when you have the lung function and go back and they say all ok. I think clearly not I feel about 90 when I’m going up stairs ! I’m ok walking and stuff it’s when I have to exert myself or when it’s really cold. So many of us with systemic sclerosis have it we can’t all me imagining it ! Xx

[Maryjcl in reply to Sami13]

Exactly Sami, we can’t all b wrong. I’m same feel about 90 too xx

[NSV69]

It’s so frustrating and concerning when I used to be quite active where as climbing stairs is now difficult.

I have been referred for respiratory physio and apparently this helps your breathing capacity and reduces breathlessness - i just hope it works.

Medicines dont really help.

There are a lot of clinical trials going on so lets hope they bring some good news.

[Hidden]

I'm in the same position, very breathless, but heart and lung specialists say tests OK, not that they've ever done a 6 minute walk test.

Some people I know have found physio very helpful on how best to breathe.

I've been wondering about sildenafil and am planning a stairlift!

[NSV69 in reply to Hidden]

Hi

Thanks for response.

Thats really worrying that you are having to consider a stair lift.

If you don’t mind me asking - how long have you had this illness and what age bracket are you?

[cowhide]

Do you suffer from acid reflux? The only time I have the breathing symptoms you describe is when I have had a bad reflux night and some fluid has gone into my respiratory system.

[NSV69 in reply to cowhide]

I did suffer from acid reflux a lot worse than currently is the case but i have started takin ranatadine and this has helped some what.

[LilaJoe in reply to cowhide]

Hi Cowhide( l had to ruefully smile at that name!),

What do you find helps the reflux at night....I think mine is called silent, as I've been unaware of it but do now get coughing and a sore throat when l wake up.