And if so how do you manage it? I was diagnosed last November after a period of pneumonia and tests for Lymphoma. I have not been able to do much exercise at all and am fairly constantly fatigued. Any tips for recover?

Hi Palmer, my dad lived with Sarcoidosis for many years. It was treated with a combination of Steroids (which he disliked and constantly tried to work to reduce) and homeopathic medicines (yes, I know the rules of STW – no God, no homeopathy, but a straight questions deserves a straight answer). He always made a point of taking gentle exercise daily – usually a walk. He learnt what would make him overly tired and prioritised his walks. He loved traveling and spent a few weeks a year somewhere warm and dry with lots of sun. This seemed to help his breathing the most. He took things at a pace he could manage and didn’t get stressed or rushed. He avoided people with common colds and other respiratory illnesses. He found a specialist who knew what was what.

Thanks Sparks, I have been walking to kids to and from school most days. It certainly helps getting out and about. Initially my breathing was significantly affected, and I had a period of constant chest infections. Since having both the flu jab and pneumococcal jab last year my chest has been clear. But despite this, and an endeavour to build up exercise I’m left with very low energy levels, exhausted all of the time. I’ve not had steroids, and was concerned about weight gain as I’ve already put the pounds on due to being less able to cycle! It’s like a vicious cycle (no pun intended!)

Dad had the flu jab etc too. He found he had to use steroids (which meant being careful what he ate) just to get the energy to exercise. He would then delight in carefully managing to lower the dose (done in collaboration with his specialist and GP) to an optimum low. He constantly told us what dose he was on as though he had won a major tennis tournament. It would take him months to build up his stamina and walking routine (eg after a cold). He walked the same routes again and again, knew the distances and treated them like a competitive event. This included building in rest periods in his day/after exercise. I guess its a question of take it slowly, build steadily. Don’t dismiss an electric motor for your bike! Good luck and all the best.

Yes, I’ve had/got it. Had two major episodes over the last ten years or so, lungs, kidneys and eyes took the brunt. My energy levels were way low but the main thing for me was the eyes, couldn’t go out in daylight and its left me with Posterior Vitreous Detachment, kind of like a detached retina but vision has returned to an acceptable level. I was treated with steroids, its a hefty dose to begin with but that reduces during the treatment,and for me it was worth it. I didn’t put on weight or for that matter suffer any significant side effects (that I’m aware of). Don’t loose heart, there is light at the end of the tunnel, I’m out on my bike every couple of days or so. Be strong.

Had it – or rather was diagnosed with it almost thirty years ago. Mine kind of just went away and so far no repeat. Other than being a bit short of breath now and then, no real issues at the time. Certainly has left me with no lasting damage, other than perhaps slightly reduced lung capacity. Good luck with it.

I guess I have had it since last July/August. Winter has been tough anyway as I am prone to SAD. Just finding it hard to visualise a way out of this 🙁