What are sarcoidosis sufferer symptoms

Symptoms of sarcoidosis

Months before my diagnosis on 25th Oct 2010 I thought I was just catching everything possible from the hospital wards, as being a healthcare support worker contact with seriously ill folks is an everyday hourly event.  The following symptoms are not to scare folks but if you do get any of these you must go get checked out straight away and push the medics as hard as possible as chances are most won’t know what is wrong with you.  I will explain in best possible detailed order of how my body started to behave against what most folks commonly call ‘normality,’ and advise what my symptoms were, no technical flash words here, just symptoms that you must look out for.


Six months before I was taken ill my eyes started to continuously cause me problems, in any order they could be; sensitive to light, bloodshot, itching, blurred vision, colours appeared affected, sharpness of vision deteriorated, burning sensations, tears non stop – which is strange as the next time they might have been dry.  Though some work colleagues would mention about my eyes I would usually brush it off as getting used to the ward work.


This may well have been a similar time to the eyes, but looking back I think the first symptom really was my cough.  This cough would start very light and small, as though you have a tickle in your throat, I would cough or simply just try to clear my throat usually ending with having to have a glass of water.  As the weeks and months went on it was the patients who started saying I should get my cough seen by a doctor.  By the time of my diagnosis I was coughing uncontrollably with very few minutes passing between each bout.

Blotchy ankles

Very tiny red spots started to appear on my ankles, this was about two – three months after my first symptoms of the eyes and coughing.  Though thinking it was nothing to worry about those very small spots started to turn into larger blotches.  The blotches started to grow and connect causing much larger blotches; the skin also became sore with leather like feeling, or thick skin sensation.  By the time of my diagnosis the blotches had simply become one large red area around both ankles and spreading up to my knees.

Swollen ankles

As the blotches connected my ankles started being very painful, though not swollen at that time, it was maybe two weeks after the pain that they started to swell, but the swelling happened fast, within a few days my shoe laces could hardly fit without getting any pain.  The sensation felt was as though they did not want to have any movement, but I did exercise with plenty of walking.


Lumps, bumps, and spots started appearing on my scalp, this was approximately six months after any of the first symptoms.  These were and still are very painful; it can feel as though you have very bad scaly dandruff. These spots spread all over my scalp and started to appear on he sides of my face, forehead and temple areas.


Though my knees appeared not to swell, they could give me a lot of pain and even seemed to grind. The timescale for this was about six months after the first symptoms occurred.

Swollen face

One of the things that seemed to confuse all the general practitioners, the accident and emergency department, even some of the early specialists folks were when my face rapidly swelled up hugely.  They all thought I had mumps; swollen cheeks usually start to reduce after five days or so.  Timescale here was about eight months after first symptoms.

Dry mouth

At a very similar time to the swollen face my mouth became completely dry, sipping water helped but at night time it was dreadful as swallowing became very painful.


I am very unsure of when the breathing problems really showed, perhaps in real terms it was a similar time to the coughing, but it felt more like fatigue and constant tiredness.  Just walking short distances would send me out of breath, but I decided at that point to do three hard walks per week, and still do with my sights now set back on cycling again.


Though the onslaught of fatigue and tiredness would expect one to sleep well, the exact opposite occurred for me, restless nights filled with coughing, dry mouth, painful face and joints made a natural event a living nightmare.

Weight loss

Less noticeable unless you weigh yourself often or your friends and family mention it to you.  I can’t really give any timescale as this perhaps was ongoing before any symptoms?  My appetite was still very good – I have since changed my eating and cooking habits to of one that seems to work for me- more on my diet soon.


This was after being diagnosed so for me it’s not an early symptom; this is on going, but raised heart rate for no reason, skipped or missed beats, fluttering irregular beats.  During April 2011 I am undergoing various tests on my heart, will update then.


Sounds very scary stating brain so perhaps the only technical medical term I will use is Neurological problems; head aches, eye problems, ear problems, numbness in limbs and facial expressions.  Again these are not early symptoms for me but ongoing with tests due in April 2011 and will then update.

If you have read to this point and feel worried then go to your medics as soon as possible, as mentioned earlier don’t let these highly paid folks put you off , get checked out with the aim to catch any possibility of sarcoidosis very early.  The sooner this condition can be caught the sooner treatment of sorts can be administered, keep positive, keep busy and above all I believe to keep exercising – more on my exercising soon.

My song titled ‘Sarcoid’ for all those involved with this condition.


4 responses to “What are sarcoidosis sufferer symptoms

  1. Pingback: Employment and support allowance tribunal 7th June 2012 | Stuart Briggs

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