Hi folks today is fibromyalgia Awareness Day…

So what to write about that’s the question, last year i did a personal piece about telling the truth about how we feel… this year I’m so tired, I’m not sure i can get my brain to function well enough for anything clever… all the reason for this deterioration of my health can be found in previous blogs so I’m not going to repeat them here…

Its hard isn’t it when you’ve had a night out been drinking hard been up half the night and danced yourself stupid… when you wake up in the morning you feel like you’ve been hit by a truck, you’re a little nauseous or a lot, you might have a cracking headache, feel very fragile and weak and possibly hurt all over from the abuse you put your body through… Most of us can identify, with that as something we have done at least once…

Now imagine that this is how you feel but what you actually did last night was, got to bed by 9pm at the latest exhausted beyond belief. You tossed and turned for a bit because you hurt all over and found it difficult to find a part of your body that didn’t mind being laid on so found it difficult to get to sleep. Now lets imagine that you got to sleep… blissful oblivion… Except for the vivid dreams…

Then you wake up three of four hours later completely awake… It could be because your in so much pain you cant stand to lie on any side of your body for more than a few minuets at a time every muscle screaming at the pressure of your body on it… or your night clothes have ruffled under your body and feel like a knife cutting in to your flesh, or maybe its restless legs and arms that you feel an uncontrollable urge to clench and relax and move and they wont quit… or maybe your just wide awake still exhausted but the old brains not having any of it…

So you roll around in bed for a few hours not getting anywhere, or you get up have a warm milk, read a book spend some time on face book, to be honest you’ll do anything to distract your mind from the pain and the fatigue… eventually you may if your lucky make it back to bed and get some more sleep… if you’re not that’s you till the following night… or later that day when you crash out form sheer exhaustion. If your me, it probably just means as soon as I do drop off ill be woken by my alarm to get up and get my son to school and so the day repeats a little like ground hog day … the events of each day change but the result is the same unrelenting pain and fatigue. And i didn’t even get a great night out to deserve it… :(

By Pain I mean anything from slight aching to excruciating ‘my god somethings broken’ kinda pain for what appears to be no reason, any where in the body at any time and often in more than one place at a time. Burning, Pinching, Stabbing, Aching, Shooting… you get the picture and you can have any of them or all of them any where in the body at any time…

By fatigue i mean the kind of tiredness that makes you wish you where more than unconscious, tiredness that makes you want to cry it’s so all consuming, and what’s worse it’s not just feeling like you’ve run ten marathons without a brake, it means muscle fatigue so you cant hold your arms up long enough to brush your hair or help your child put a T-shirt on… I describe it like someone has suddenly poured led in to my arms or legs making holding my arms up or walking standing a thousand times harder and strangely painful it’s so odd that muscle fatigue isn’t just to tired to lift something, it’s really painful too and I’m already much more tired than I’ve ever felt before even more tiered than 80 hours of labour and believe me when i say that was exhausting… Its like gravity has become hundreds of times heavier everything from holding a mug of tea to folding my arms is utterly exhausting…

So what’s causing all this?

No one really knows theres lots of thoughts but no real substance, but I think we are getting closer to a better idea of what’s going on or rather we are getting closer to understanding the complexity of what’s going on even if we dont know why. Their have been some very good reports in recent months that have started to unravel some of the story…

A recent article on Mast Cell Aware web site discussed a study that seems to say that some of the pain FM sufferer experience could be due in part to Mast Cells…

“First, what are mast cells? Mast cells are a part of the immune system and can be found throughout the body. Inside the mast cell are tiny granules containing different chemicals that cause inflammation. These unique cells control many bodily functions and are important immune, allergy and infection fighting or defensive cells. They commonly reside at our body’s various borders where we are exposed or vulnerable to attack. However, if we have too many of these covert immune cells in an area or they misbehave, severe symptoms and serious disorders can result.”

Mast cells are located in connective tissue, including the skin, the linings of the stomach and intestine, and other sites. They play an important role in helping defend these tissues from disease. By releasing chemical “alarms” such as histamine, mast cells attract other key players of the immune defense system to areas of the body where they are needed.”

“Mast cells are implicated in the pathology associated with the autoimmune disorders rheumatoid arthritisbullous pemphigoid, and multiple sclerosis. They have been shown to be involved in the recruitment of inflammatory cells to the joints (e.g.rheumatoid arthritis) and skin (e.g. bullous pemphigoid) and this activity is dependent on antibodies and complement components.”

“Mast cells play a major role in many physiologic processes, but for reasons that are unclear, they may become an aggressive force, which can damage the natural biologic balance.”

So these Mast Cells could be playing a role in our widespread pain…

Another study conducted at the University of Illinois College of Medicine at Chicago, found…

“These studies, comparing fibromyalgia patients to healthy people, confirm that fibromyalgia is an immune system disorder.”

“What we discovered over years of research is that fibromyalgia patients have an abnormal immune system,” said Bruce S. Gillis, MD, MPH, lead researcher and founder of EpicGenetics. “These peer-reviewed results have finally been able to ‘tear back the curtain’ to reveal that fibromyalgia is an immune system dysregulation disease relating to the production of protein molecules called chemokines and cytokines by a certain type of white blood cell.”

And another study in to “Muscle fibre velocity and electromyographic signs of fatigue in fibromyalgia” a study in to why it is so difficult, painful and tiring for FM patients to exercise found that…

“something as simple as mental stress tests (math test) or eating or other sympathetic nervous system activators can activate the back muscles of people with fibromyalgia. That study suggested FM patients muscles could be in state of almost continual activation.”

“One might have thought that strength and frequency of the electrical signals would have been reduced in these exertion challenged FM patients but as so often happens, the opposite was true; the electrical signals in their muscles were, oddly enough, going banana’s, putting them were into a hyper-active state.”

“Electrical signals trigger the muscle contractions we use to produce force but those signals should diminish in between the muscle contractions. They did in the healthy controls but not in the FM patients whose muscles were being constantly prodded to contract.”

‘This didn’t mean they were supermen or women in disguise; far from it – the inability to turn their muscle activity off and allow them to rest – suggested their muscles were chronically tensed, not strong.”

“With your muscles in a continually contracted state every time you put them under load it may be that you are running a marathon for every mile you walk. This study suggests that exercise may throw the muscles of people with FM in a state of confusion in which muscle rest breaks disappear leaving the muscles chronically activated (and in an arrythmic state?). “

“The ongoing sympathetic nervous system activation, the possibly increased glutamate activity, the NK cell burnout, the inability to turn off attention to innocuous stimuli and now the ongoing electrical activity/muscle contraction in FM all suggest chronically activated systems play a role in this disorder.”

So Along side changes that have been detected in both blood flow and function of the brains of people with FM these new discoveries prove that not only is Fibromyalgia very real but that it is also extremely complex affecting multiple systems simultaneously it is chronic multi system failures and or over reactions none of which are consciously controllable…

Please follow the links and read the articles in full they are not very long and will help you, your friends and families to come to grips with some of what’s happening with fibro… I could continue writing about the things that are going on with us but to be honest I’m to tired so this will have to do for now…

Have a great Fibromyalgia awareness day enjoy it to the full even if you crash tomorrow… excuse me now I’m going to go fall over and rest… Dxxx

Other links…

http://but-you-dont-look-sick.blogspot.co.uk/2013/05/treating-symptoms-wont-find-cure.html?spref=fb