So tired of coughing and feeling exhausted

[Gabby6969]

I have sacardosis had it since 2004... coughing everyday, oxygen low, bones hurt, hair falling off... do u have any info on how it can rid of it ?? Sacardosis is in my lungs ,hard for me to walk ,exercise , feel exhausted almost every day. . I take steriods just to control it so it will stay in my lungs

[sassy59]

Hi Gabby, my hubby had had sarcoidisis for 25 years now and steroids have.helped but it is in his lungs, airways and heart. He remains positive because it is.inactive.

Do you have a specialist that.you see? If not, you need a referral from your doctor.

Thinking of you. Xxx

[sassy59 in reply to sassy59]

Forgot to say, get a.bone density scan done. Good luck to you. X

[Gabby6969 in reply to sassy59]

Thank you

[Gabby6969 in reply to sassy59]

Thanks for the advice. Yes I have a specalist ,already did a bone density, which confirm my bones are thining... trust me try to stay positive but there are days I feel very stress and worthless... hopefully one of these days it will go away 😉😉

[SarCisMe]

Hi Gabby6969,

I too have been diagnosed with Chronic Multi System Sarcoidosis, had 2 biopsies in different organs, Lymph nodes, Chest Wall & Lungs, then about 2 years later my Liver biopsied too, all positive for Sarcoidosis. I had the persistent coughing for 2 years and 1 month and after trying every kind of cough product available I was begininh to think it could never be kept under any kind of control AND THEN, Oramorph, the liquid transformation medicine. I was given it for severe pain control, but to my amazement it settled the coughing, so valuable at bed time. Its obviously prescription only, but perhaps you could have a word with your GP see if they will let you try it out see if it helps you and your coughing. It might be worth a try. Maybe just for bed time so you can at least get some sleep. It would of course be up to your GP. I would say though a word of warning, I have been given lots of medications to take by the different consultants who look after my Sarc, this is the only one I can't drive with, have to wait till I get back home before I can take it, this is because of how it makes me feel. But there are laws in place now for prescription medications taken and your driving capabilities. Just a thought, I totally understand what that coughing constantly is like on your body and the tutting from people walking about outside staring at you whilst your going red in the face from all the coughing your doing, totally ignore those people, you have enough to cope with.

Good luck, hugs, Angie xx

[Gabby6969 in reply to SarCisMe]

Thank u for the advice. .will talk to my specialist .. yes it's horrible coughing all day. .. trust me I do ignore people cause there some that just look at me with a weird look... but I try my best to stay positive. .. good luck to you too...😉😉

[SarCisMe in reply to Gabby6969]

Hi Gabby

It's worth a try especially when you have tried absolutely everything else and nothing has even lessened the persistent aggravating coughing. My coughing just started up again about 2 weeks ago right out of the blue and totally unexpected. Very luckily I was still using the Oramorph for pain and mainly for bedtime to settle my chest, throat & breathi g down so had a bottle in the house.

Do you cough alot when you lay down? I can't lay down anymore, I actually try to sleep sat up I have one of those supports that I can put all my pillows on, maybe you could ask your doctor to refer you to your local Occupational Therapist they can come and do a home visit/assessment and suggest aids that might be of benefit to you, again its worth a try to help you with the persistent coughing. I really hope you can get some relief because I understand how hard it is to cope with Gabby. Best wishes to you, I hope you can find some help. Hugs Angie.

[Gabby6969 in reply to SarCisMe]

Thanks for the advice. .when I go to sleep it gets worse , especially at work cause I do call center lately been feeling extra exhausted. . BUT once I see my specialist I will ask him about other solutions. . Hope you get better too... hugs and kisses

[Hidden]

One of my sisters is on oramorph for emergencies as a form of pain relief as she has very severe osteoarthritis. The label does say it can cause breathing difficulties but conversely it will help with coughing. My cough is bad too though I only have mild copd and she offered me some once, but I wouldn't dare take anything so strong so I refused. It might help you though. x

[SarCisMe in reply to Hidden]

Hi coughalot2,

It makes life tough to cope with, with this constant persistent coughing. Something a GP/doctor might prescribe/try 1st is Codeine Linctus, I did try this, but I just couldn't stomach the taste and it made me sick. I had to go through all of the cough products first, cost me a fortune, lol. I also tried all the things my doctor prescribed for me. Like you say, Oramorph is a very strong medication, (I take it originally for very severe pain due to injuries sustained in a head-on motorbike accident some 20+ years ago which left me permanently disabled), so lucky for me it helps with 2 health problems. Take care, Angie xx

[Gabby6969 in reply to SarCisMe]

Thanks for the advice. . Yes I will ask my dr. .. you take care too ....

[Gabby6969 in reply to Hidden]

Thanks I will ask my dr... hope your sis gets better ... best wishes

[AmethystAngel]

Hi,

Prescription strength co codamol also helps with coughing.

I am also a member of the sarcoidosis owners club... There are quite a lot of us on the SILA forum but I tend to like the happy go lucky side of this BLF forum, although I don't tend to post very often as brain fog gets me lost off with it all xx