- I'm Margaret Coles
- Evidence base for my philosophy
- Personal experience of multiple Long Term Conditions
Personal experience of multiple Long Term Conditions
Over the years I have developed many connective tissue disorders and other seemingly unrelated conditions and when I moved into sheltered housing in Cambridge, I spent time chatting to my newly-found friends and neighbours. As I did so I found that I shared many of their long term conditions and started to put them down in some order. I was amazed at their number and began to find common threads running through them.
An inappropriate autoimmune response figures high on the list as does what is now recognised as Dysautonomia. This is a malfunctioning Autonomic Nervous System which is a highly complex and wide-ranging control mechanism of our bodies. Amongst other things it regulates blood pressure, respiration rates. heart rates and rhythms. We talk of the 'fight or flight' mechanism, a simplistic term for our bodies response to stress. When this system malfunctions inappropriate responses are generated which can be life-threatening. In my case I now realise some of my symptoms are triggered off by my posture, especially in my middle back in the thoracic area of my spine. There is what is now known as Postural Tachycardia, which is disturbances of heart beat often found in young women and related to posture and accompanied by extreme fatigue.
Many connective tissue disorders are associated with auto-immune responses where the immune system detects the body as a foreign object and attacks normal tissue. They can include 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. It is now thought that Ion Channel Myopathy lies behind most connective tissue disorders as well as the conditions mentioned above. Ion channels describe the movement of chemicals and nutrients across cell membranes and when there is a malfunction there is a disease response. It is not yet clear how all these issues are related.
In my case the condition was aggravated by having the recessive gene producing red hair and ultra-sensitive connective tissue. It is also non-elastic and weak. 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 Sacro Iliac Joint problems.
As to the actual conditions, from the mid 1980's I suffered two acute flare-ups of polymyalgia / fibromyalgia the first of which caused intense irritation of the lining of my nerves throughout my body, the second was accompanied by intermittent spasm of the muscle sheaths, very debilitating and lasting months. I have also had two episodes of agonising Bornholm's Disease ( Devil's Grip) 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..
I had occasional chest pain and later it was detected that I had had two minor heart attacks. Over the years I experienced various irregularities in heart rhythm thought initially to be due to medication. Now it seems it is rather due to ion channel myopathy consistant with my condition.
Over a period of 30 years I have had two bouts of Milk Duct Cancer, leading to surgery and radiotherapy. In 2018 breast cancer was detected in the other breast and a mastectomy was performed which removed under-arm glands. These fortunately were clear. and no further treatment was given.
During this time I suffered from debilitating digestive problems, as well as a post-jaundice liver sensitivity. This also makes it difficult to deal with the toxic side-effects of drugs. Drugs cause malfunctioning of the Autonomic Nervous System resulting in innumerable symptoms.
Perhaps the most serious of all episodes was a potential Acute Renal Crisis provoked by a blood pressure of 210/110 for an extended time. If left untreated within 48 hours it can lead to permanent damage to the kidneys. In some severe cases it causes immediate renal shutdown. Fortunately this did not happen in my case but very close monitoring of blood pressure is essential.
Another complication of ion channel myopathy mentioned above, is Hypokalemic Periodic Paralysis where the transfer of potassium in and out of the muscles is affected, leading to short term paralysis of the voluntary muscles of the body in varying degrees. This has happened on a number of occasions, in two instances aggravated by severe pain in my neck and general fatigue together with a feeling of faintness, and causing a complete loss of control of my muscles from the neck down. These were of short duration, but frightening none the less. There seems no reason to connect this with an inherited Systemic Scleroderma as is sometimes the case.
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 repeated facial lacerations. In addition to this as a result of a recent serious collapse, I broke my right wrist and shoulder. This was further aggravated by an abscess under my jaw which necessitated its removal together with a tooth. It has taken well over a year to regain my stamina and adequate function of my right arm.
There is now reason to suspect that I have Lupus Erythematosus, which went undetected in the past. This would explain the recent acute flare up of all my connective tissue, leading to times when my body locks into pain and stiffness and I am unable to move. This led to a compllete deconditioning of my body in 2017 when I was unable to use my arms and then my hands and developed severe stiffness and numbness in both ankles. Treatment of the immune system was withheld for four months pending investigations. Because I was in danger of falling and not geting up, I was given a care alarm which proved essential one morning as I could not take my medication. Although I improved remarkably, the numbness and stiffness in my ankles persisted and led to a horrendous fall, which, were it not for the gracious intervention of God, should have proved fatal. This numbness had been reported to a Neurologist and a Rheumatologist who totally dismissed the signs of thickened skin and symptoms of numbness.
It was the holistic assessment of a Geriatrician to pinpoint the cause of my fall. A lack of proprioception in my ankle joints. Pain and anti-inflammatory medication was essential while waiting for a diagnosis. Finally the consultant said it was fibromyalgia which is totally unsatisfactory. Having now the perspective of possible SLE, looking back I can see how so much fits together and makes sense. Once again it is through divine providence that I have survived many times of crisis and still fit for the future!
Taking all these conditions into consideration it became obvious that I have been living with multiple Long Term Conditions. 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 Dysautonomia.
If anybody has learned 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.
These conditions are obviously the backdrop to the advice and information on this website and have given me personal insight into the problems and pain of life with multiple Long Term Conditions. The fact that I am so fit is testimony to the effectiveness of movement as therapy, accompanied by an optimistic outlook and love of life. Having meaning, purpose and a clear role in life is perhaps the most important of all.