April is Sarcoidosis Awareness Month. And, having been diagnosed with Sarcoidosis around 2008, I would have thought that after almost 20 years I would know how to recognise fresh symptoms of a new flare up of this pernicious syndrome.
For the last three weeks, since I returned to England from Kuching, I have had a series of symptoms that I was responding to separately. I have had a serious failure in doing the ‘joined-up writing’, not realising that together these symptoms have indicated yet another flare-up of sarcoidosis.
I must have picked up a cough and a cold on one of my recent flights from Kuching, Kuala Lumpur or Muscat. But I ought to have been able to shake that off within a week or ten days. Instead, for almost three weeks now, I have had the uncomfortable symptoms of a heavy head and chest cold, along with pains in my joints, particularly in my hips, legs, knees and ankles and legs, late-night asthma-like breathlessness, a feeling of being tired and listless, and a nasty, red rash across the lower shin on my left leg.
My breathlessness forced me to excuse myself from reading one of the lessons and singing at the Parish Eucharist the Sunday before last and to stay away from the choir rehearsals the following Wednesday.
I went to my GP earlier this week complaining about some of these symptoms, worried that the pain in my lungs might even be pneumonia.
I went to the pharmacist about the rash, and was recommended to use hydrocortisone ointment with a mild steroid.
I had what I thought was a mild but troubling asthma attack when four of us went out for a family dinner in Stony Stratford on Tuesday night and needed extra use of my inhaler.
I was not in full voice when I returned to the choir rehearsals on Wednesday evening.
Then, when more volunteers were being asked to take part in foot-washing at the Maundy Eucharist in Saint Mary and Saint Giles Church last night, I realised I was about to make my excuse, ‘Sorry, I still have a nasty sarcoid rash on one of my shins.’
Subconsciously, I had already made the connection within the last 24 or 48 hours. I now realise that all these symptoms amount to Erythema Nodosum.
I have just learned in recent days that Sarcoidosis often presents on the shins as Erythema Nodosum or tender, red, or purple-blue nodules indicating an acute, often self-limiting, flare-up of this nasty syndrome. These nodules can be accompanied by joint pain, fever and fatigue. Other skin manifestations include chronic, brown or purple papules or plaques. And I just thought it was a nasty, large pimple right beside the rash.
The key characteristics of shin rashes in Sarcoidosis involve Erythema Nodosum, a rash that appears as painful, tender, red-to-blue lumps on nodules, and they are primarily on the shins. This acute but transient symptom of sarcoidosis often resolves on its own within three to six weeks, but as the tender, red nodules fade they often leave behind bruised-looking, purple-blue areas.
Of course, Erythema Nodosum is not solely caused by sarcoidosis and can result from other conditions. But the other associated, common symptoms include flu-like symptoms before or at the same time as the patches on the skin, fever, malaise, and arthralgia or swollen, aching joints.
A full diagnosis often requires a skin biopsy to distinguish this from other conditions. But acute cases of erythema nodosum often resolve themselves without treatment, although ibuprofen or paracetamol can be used for pain and in chronic cases dermatologists may prescribe topical corticosteroids, tacrolimus ointment or oral medications if the lesions are widespread.
Erythema nodosum commonly affects the lower legs, but you can get it in other areas, such as on the arms, thighs and neck. Thankfully, it usually goes away by itself. The skin usually heals on its own within three to eight weeks. But when the affected patches of skin heal and fade, some people are left with marks that look like bruises.
They say some things that can help ease the pain of erythema nodosum include ibuprofen or other anti-inflammatory painkillers, rest with your feet raised on a pillow, avoiding long periods of standing, walking and running, or putting .a cool wet compress, like a damp cloth, on the affected area.
I have heeded little of this advice in recent weeks. If only I had known. I walked and walked, quite a lot, when I was in Walsingham a few weeks ago. I walked and walked, quite a lot, around Oxford yesterday, before and after the Christ Eucharist in Christ Church Cathedral yesterday.
If only I had realised that my subconscious mind was telling me all this. Already there have been warning signs that as well as my lungs sarcoidosis may have have left some traces on my heart and a kidney.
It has been a tough reminder over these past three weeks that we should all liisten to what our body is instinctively telling us about our health.
Hopefully I’ll be as right as rain within a few days.
As I have said so often in the past, I may have sarcoidosis, but sarcoidosis does not have me.
