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Personal experiences of living with multiple Long Term Conditions

There is a genetic condition which I inherited, known as Scleroderma, meaning 'thickened skin' as this was the most observable manifestation of the condition. In some cases it proceeds to become Systemic or Diffuse Scleroderma which is an umbrella term for a wide range of connective tissue disorders, mainly associated with auto-immune responses. It includes Osteo Arthritis, Rheumatoid Arthritis and Lupus Erthythematosis. Multiple Connective Tissue Disorders or Undifferentiated Connective tissue Disorders is a term now commonly used when a precise diagnosis is not clear. Polymyalgia and Fibromyalgia are also included.

In my case there was an early onset of Reynaud's Disease where changes in temperature cause a whitening of the fingers due to constriction of the blood vessels, followed sometimes by blueness then bright redness as the blood vessels relax often causing intense pain. I was always concerned that I would develop more serious internal symptoms as my paternal aunt had died of the condition as it later caused constriction of her internal organs with thickened connective tissue. As I look back my father, and now a number of cousins displayed or still display, symptoms of one kind or another.

In my case the condition was aggravated by having the recessive gene producing red hair. This has made my connective tissue both weaker and less flexible as well as ultra-sensitive. Through the years I have needed gynaecological and foot surgery and it necessitated a Cesarean birth. It has led to an unstable thoracic joint and lower back problems.

I suffered two acute flare-ups of polymyalgia / fibromyalgia, the first episode causing very sensitive nerves throughout my body and the second, intermittent spasm of the muscle sheaths, both very debilitating and lasting months. I also had two episodes of agonising Bornholm's Disease ( Devil's Grip) with pain in the intercostal muscles, both following viral infections. I developed a Frozen Shoulder which took 18 months to clear and an acute trigger spot on the knee joint lasting a year and causing swelling and inflammation to the extent of depriving me of sleep.  For two years I had chronic hip pain and weakness, a hip that was later to cause serious health problems.

Over a period of 30 years I also had two bouts of Milk Duct Cancer and at times debilitating digestive problems as well as a post-jaundice liver sensitivity. Apart from the last,  knowing what I know now they are linked in some way or other

It was detected that I had had two heart attacks and over the years I experienced various irregularities in heart rhythm, thought to be caused by medication for prolonged acute anxiety but now seemingly part of what is called Andersen Tawil Syndrome.. Due to mismanagement of this medication it was thought necessary to prescribe Respiridone which I was on for 9 years. This had serious side effects, sometimes life-threatening, aggravated by Scleroderma but unrecognised. It is banned in patients over 65 with cognitive problems in America and has been the issue of one of the most damaging court cases involving pharmaceutical companies ever held.

Perhaps the most serious of all was an Acute Renal Crisis which recently provoked a blood pressure of 210/110 for an extended time. It is thought to be linked to a stiff large joint, which in my case has always been my right hip. It is this that can cause severe kidney damage if left untreated within 48 hours. High blood pressure was prolonged as it was not controlled by medication and my condition was aggravated by severe pain in my neck and general fatigue together with a feeling of faintness, and on occasions a complete loss of control of my muscles from the neck down. 

My balance has always been poor but with various medications it became a severe risk to me and I suffered five serious falls, breaking the fingers of my left hand and causing facial lacerations.

Taking all my conditions together it seems there is the common thread of Scleroderma which only now is becoming apparent.  Each group of symptoms is a condition in itself resulting in multiple Long Term Conditions.This is not clearly recognised by the medical profession which makes holistic care impossible. At times medical support has been outstanding, at other times abysmal and indeed verging on criminal negligence, particularly the management of medication, even more essential in cases of Scleroderma. 

If anybody has learnt to self-manage their health using much of what I have described on my web pages, it has to be myself and I have the distinct advantage of being able to empathise with others no matter what is wrong. I can assure you there is hope for a fully-lived life if you are able to educate yourself and manage your health with understanding and support from others.