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My Story
Born 1962,in a very small home in a small town - Warburton in Pakistan ,I think my illness was triggered by repeated influenza and compounded by adverse childhood experiences, ,PEM,Pain,Insomnia,Anxiety,guilt Depression engraved in my developing fragile personality.
Later I managed to complete my medical studies with mild to moderately impact (at 60-70% capacity) and struggled through my career for 30 years, although there had been crises in 1991, 2001 and 2008, like toothache,iatrogenic tooth extraction, facial pain ,relationship problems. There were waxing and waining capacity 30-40%, but candle of life some how remain lit but flickering.5 years before retirement (60 year),It looked I am totally burned out when every faculty of me dropped to 20-30%.
ME lived in me and lead to a changed personality. My vigor and zeal, my pleasure of life, were stolen.Now I have cognitive dysfunction , loss of creativity ,social handicaps/isolation,muscular weakness , many psychological emotional problems,thermo dysregulation,plantar facitits, shoulder impingement etc.
Inspite of all, poor concentration, fog,fatigue,confusion I managed to get higher medical education from the top universities of Pakistan. I hold degrees MBBS ( King Edward Med. College),Clinical Pathology Diploma and & Master in Public Health ( MBBS, DCP, MPH) from top Universities of Pakistan
Ironically Medical fraternity of my country do not recognise this multiprong illness which I must call a disastrous disease.There is no data or any research here. I taught myself from world of Internet and research organisations,support groups ,OMF, Action for ME, the ME Association ,IASP ,Pain management ,relevant psychological organisations ,Doctor with ME .
PEM, marked Insomnia , left sided head to toe widespread pain,TrP in left eye,neck, profound muscular weakness,balance problems, brain fog,anger,aggression, anxiety and depression, guilt .what not to mention. In 1998 my class fellow psychiatrist labelled me a resistant depression patient because he tried every anti depessant on me.Ultimately he administered 5 ECT shocks to me.Thanks to my Doctor wife who looked after me. In 2008 ,a young psychiatrist who was qualified from abroad, for the 1st time, said to me " You are suffering from Fibromyalgia ,Take Cymbata ( Duloxitine, and you ll be good".Now I know ME more than many Medical specialists. But I've no or little voice and support.
I consulted my class fellow- a well known rheumatologist.He said “Shafiq! you just exercise, take some supplements: CoQ10, duloxetine, pregabalin etc.” and I was thinking this guy doesn't know the storms and flames within me.
My fingers are painful write all this .Speaking is some time difficult . sometimes I feel internal tremors.double vision.GIT upsets,ectopic heart beats.By hit and trial I take some pain killers, Amitryptaline,Clonazepam .There is no collaborative team here to treat or advise. So I am the care provider of myself. The last few months have been very troublesome, and I begin to suspect that I am progressing to Severe phase of this illness. Mostly I am in home. but I drive car and run a small Lab to rehabilitate myself.
I want to give hope and help to me and everyone suffering ME in the world conveying that Earth is still smiling by beautiful flower of spring. Every bird are cheerful,why not We,ME.
This crypto disabling disease is not new.Much research is going on in the world especially UK.who gave name & recognition as ME.Otherwise it is degraded to CFS and Fibromyalgia. We should open minds and eyes to find a cure for this disease,by research ,technology as we have conquered many diseases in the past.it will be too late for me, but I look light of hope and help on the other end of this bewilderment and darkness.
As a doctor and a #globalvoiceforme, I would like to say to the world’s health authorities that this is a real physical disease. Quantify it's impact by Epidemiology,DALYs, BoDs,making Millions Missing who could be Millions of economy of a nation.
A side story: I have 18 year old son who was born in2005 with Osteogenesis Imperfecta type 3 (brittle bone disease). He had 35 fractures before he was 16 years of age and thankfully his rodding surgeries were done in Canada and US. He has chronic pains and, I suspect, ME/CFS. I rehabilitate this wheelchair bound son also. The literature shows the disease runs in families. May it not be so!
To complete the questions Shafiq took many days with pacing and lying in bed.it took many hours to recover .
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