E is for educating yourself.

I was diagnosed with hyper mobile joints over 18 years ago but all I was told at the time was that it could cause joint pain. I was diagnosed with Hyper Mobility Syndrome (HMS) and fibromyalgia three weeks ago, following a prolonged period of chronic pain, severe fatigue,  poor memory and problems with word retrieval. Then four days ago I received a letter from my rheumatologist to say that I also have a vitamin D deficiency. Interestingly FM, HMS and Vitamin D deficiency cause very similar symptoms! – Chronic pain in joints and muscles, fatigue and cognitive dysfunction.  So there are three possible causes for my predicament!

I have found the following sites very useful in my initial research – NHS  and Arthritis Care. Both give a comprehensive list of Fibromyalgia symptoms and outline the ways in which it is treated.

Similarly the NHS site about Joint Hyper Mobility Syndrome is a good place to start any research about HMS.

For vitamin D deficiency you could start with the patient.co.uk  website.

At present I am finding the chronic fatigue the most troubling symptom. I have been struggling to get to sleep at night, despite feeling exhausted, and even though (when I eventually drop off) I sleep for eight or nine hours I never feel refreshed when I wake.  Dr White’s talk at the fibromyalgia awareness event last week gave me a clue as to why this is happening.

Researchers have found that patients who suffer from fibromyalgia often suffer from disrupted sleep, particularly phase 4 sleep – the deep restorative part of the sleep cycle. In fact the NHS site states that it is possible that disturbed sleep patterns could actually be a cause of fibromyalgia!

Sleep occurs in cycles, each cycle consists of 5 stages and lasts about 90 minutes. Phase 1 is the transition between waking and sleep. It lasts about 5 minutes. Phase 2 is light sleep. This lasts between 10 and 25 minutes. Phase 3 and 4 are the periods of deep sleep. Brain waves are slow and blood is directed away from the brain to the muscles. REM sleep is the last phase of the cycle – rapid eye movement sleep (when we dream).

Deep sleep stimulates the production of Growth Hormone (GH), which plays an important role in repairing and keeping muscles healthy, improving bone density. It affects how our bodies store fat and is needed for normal brain function. Disrupted deep sleep leads to disrupted GH secretion. Some practitioners suggest that this lack of GH could be a contributing factor in producing the pain and fatigue of fibromyalgia. Disrupted sleep also means that fibromyalgia sufferers do not feel refreshed when they wake up and struggle to get up each morning.

A is for accept responsibility for your own health so I am currently trying to improve my sleep. There is lots of advice on the internet on good sleep hygiene. The University of Maryland Sleep Disorder Centre has some good advice.

Improving my sleep hygiene alone didn’t really make any difference so I downloaded a couple of free apps – Deep Sleep (Darren Marks) and Relax Melodies Seasons (Ipnos Soft) – and for the last fortnight I have been using them to help me sleep. I find falling asleep very easy now and enjoy using the apps. I am also waking up feeling marginally more refreshed.

HelpGuide.org has lots of information about sleep and sleep cycles. They suggest that you set a wake up time that is a multiple of 90 minutes (the length of an average sleep cycle) to avoid waking up in the middle of the deep sleep phase as waking up at the end of a cycle when your body and brain are nearer wakefulness may make you feel more refreshed. I am going to try it tonight! I am aiming for 7and a half hours sleep. It would be lovely to think that I could wake up feeling refreshed tomorrow. I am thinking positively J


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