Category: Fibro


Hi folks..
I know its been awhile… busy busy as ever…
Our story is a twisty turny thing that seems to have a life of its own… at the end of my last post we had given up on Access to Work doing any more than helping with transport costs. We where still waiting to here from the DWP about PIP this was in March we had been waiting since September…
We where also waiting to find out if J was going to be made redundant… all on top of waiting for our sons SEN assesments three yrs and counting…
my fibro… J’s cancer  and looking after our son with SPD…
So now in the middle of August where are we and whats going on…

Well at the begining of April J was told he would be made redundant but would have work to the end of June… all the time working in a job that required him to be standing on his leg and in pain…(I have some choice words id like to say to them, they basicaly tortured him and set his recovery back possibly perminanely for eight months then kicked him out… grrrr)… At the tail end of April they told J he wouldnt be working through till june and he left the company at the end of the month… his redundancy package was all over the place and he was not paid when he was told he would be plunging us in to further debt… however temporary… at the begining of May he got the first half of his redundancy and we where able to sort most of our over due payments, paid and caught up on things we had got behind on when he had been off sick after the surgery.

At the begining of May J saw his consultant who thought he may have to have more surgery the prostetic knee joint seems to have malfunctioned very rare apparently… to be honest we are running out of rare things that can happen… (touch wood) we have to wait now to find out what, when, and if he has to have more surgery…

Towards the end of May J got a letter from the DWP apologising for the delay in his PIP assesment decision…not the letter we wanted after nearly nine months…

A couple of weeks later we had the decision through… low rate care and low mobility both of which would have been high rate if hed been assesed when he applied… but not to put a dampener on it… the backdated pay helped pull us out of a pit and has helped take the weight off of us trying to get through our driving tests… as J can no longer cycle… or walk very far… and neither can I…

So here we are in the middle of August J has had all his redundancy and is free off the company…
We are no further forward with our son’s assesments nothing has been done in the last few months… all his refferals to the social pathway, computer specialist and child mental health team have not materialised yet nor have we had the final report from the sensory pathway…

J has applied for several jobs some of which put him through to the final rounds but he heard no more after disclosing his medical history… (this makes me so angry he just wants a job any job he can do)…this has been getting him down and by way of trying to cheer him up I went in to a local new age shop and asked if they would stock prints of his work if I could convince him they wanted them… they loved them and asked me to tell him to get some to them asap… you can see his work here. So that’s one possible outlet or alternative work option.
And im still trying to keep it all together… the garden needs doing the bathroom needs decorating and im all out of spoons…

At the end of July I passed my driving test yay and J spent some of his precious redundancy getting some prints done at a fabulous printers called Monkey Puzzle Art Printers on the north coast of Cornwall, lovely supportive people who loved J work and helped me to convince him he can make money at this…

J is now in the process of setting up a blog and websites FB stuff as well as producing works he’s hoping to sell at some point…

Now for the bad news, J has had to put his job searching on hold because at the beginning of September he has to go back in to hospital to have two further big ops… The first will involve the Drs removing all of J prosthetic bone implants and prosthetic knee… Because it’s not working…They will implant a spacer and antibiotic cement to keep his lower leg attached to his upper leg for six weeks while they blast his body with an intense course of antibiotics to try to kill the MMSA bone infection he got during his first surgery… Then he will go back in and have new bone implants and prosthetic knee joint put back in… They have to be new to eradicate the infection… They need to get rid of the infection not only so J doesn’t die but also because it’s causing bone necrosis at the prosthetic join which is causing further problems with his prosthetic… He is at time of writing still cancer free so we hang on to that…

So job hustings on hold as we all hold our breath and preparing for the roller coaster ride to start all over again, this will reduce his ability 100% and we’ve just learned he no longer qualifies for ESA as my earnings and Working tax credit just scrapes over the 7,000 a yr limit… any more good news?

In the mean time we are trying to have as much family time as possible just I case 😦 and finishing the decorating and the garden as well as helping my mum decorate her hall… Sigh oh and I was diagnosed with ME as well as Fibro… If the gods are listening I’m still trying to hold it all together some help would be appreciated and I don’t need any double edged blade learning lessons about being careful what I wish for… We just wanna get through and still be a family surviving the onslaught on the poor and working classes by this government like we don’t have enough worries…

Take care everyone… Dxxx

Advertisements

Morning Folks,

Well, its Fibro day again where did that year go? Answers on a post card please 🙂

I wanted to have something profound and engaging to say today but to be honest I just don’t have the spoons…

I had two craft fairs to do over the weekend exhausting but fun…

And I’m also setting up a WordPress site for a new piece of action I’m involved in called #women2gether, This is a possible legal challenge to the ICC to investigate the UK government and other countries governments for the targeting women as well as others with Austerity Legislation. This is a group of women that are bringing this challenge so it’s primarily about women and how austerity measures and legislation is targeting women and causing both extreme hardship and death…

So that’s exciting and scary and a great deal of work. 🙂 spoon heavy work lol…

The other thing I’m involved in is FibroME for Action…a group that me and a Beth Greg have put together to look in to how WHO and NICE have inaccurately designated both Fibromyagia and ME and looking at ways to lobby to get a better designations for our conditions which would hopefully lead to better care and services.

There has been a great deal of research going on in the last year that is showing more and more that both Fibro and Me are complex physical neurological immune system malfunctions and that is also very exciting and hope giving… Perhaps for the first time Dr’s are seeing us, they are slowly realising that this is a serious epidemic of not neurotic 30 something women/men but a serious public health issue the proverbial canary in a coal mine something the ME community have used well to their advantage although there is still a long way to go…

Part of this action is also fighting the Psychotherapist desire to get Fibro and ME designated as mental health issues and looking at how the DSM5 will affect those who may be wrongfully diagnosed with a Mental Health problem because of the vagueness of the new Somatic illness criteria…

So as you can see there are good reasons for my not doing a long-winded pice but i hope this gives an overview of the actions I’m involved in and that you can be involved in to. I will pop up links to all the groups, blogs twitter tags that will lead you to actions you can get involved in should you wish to do so… lol tempted to say this blog will self destruct in five seconds but i think that just shows my age 🙂

Have a lovely restive Fibro day sending hugs and spoons to all… Dxxx

 

FibroMe for Action Blog… brand new so bare with… http://fibroandmeaction.wordpress.com/

FibroMe for Actions Community Facebook group… https://www.facebook.com/groups/519959614784152/

Women2gether blog… Also new … http://women2getherblog.wordpress.com/

@women2getherblog … #women2gether

 #May12BlogBomb

 

Petition demands fibromyalgia test be fit to work.

via Petition demands fibromyalgia test be fit to work.

On Being a Burden

I guess this is a post ive been avoiding really as it’s a subject I try to avoid thinking about at all costs.

When I first became ill I was at the end of my first year of a degree in Studio Ceramics I had my future planed out.  I would make wonderful ceramics by day that would sell for lots of money and I would sing by night in the band I was in that was becoming quite well-known locally… life would be perfect…
But as often happens none of these things happened well not the way I imagined they would…

I did complete my degree through sheer bloody mindedness and with a lot of help from my partner J who had stuck with me despite my diagnosis coming only a few weeks in to our relationship…

But the price had been… becoming rapidly sicker, becoming a wheelchair user and having to give up my singing which was like a dagger to my heart a wound that has never healed… I miss it like you would breathing…

My partner J became my non medical helper at college doing all the things I couldn’t… for example he would take me to college, wedge my clay, prepair my tools, sort out library books take me down the hill to the canteen and back… you get the picture… and because I was so tired when I got home he would clean the house, cook our food, bathe me and all the usual stuff people need help with when they are so fatigued they can hardly move. Learning to cope with someone else doing almost everything for you is soul-destroying, its frustrating, lonely, and heart breaking to see someone you love give up so much of themselves and their lives knowing you can do little or nothing about it..
When you literally can not survive without the sacrifice of another’s freedoms it’s a pill that is really hard to swallow.

When I finished my degree I was almost completely dependant on J for everything but I forged forward on to do a p/t PGCE.
It was almost like I felt if I stopped trying to achieve something with my life I would stop living but after a year I started having panic attacks at just the thought of returning for my second year I literally would go white and shake at the thought of all the travel and work I needed to do… not my first experience of mental health problems but the first since becoming sick.
I took a year out which turned in to several as my panic subsided and the mother of all flair’s hit me, I could barely get out of bed and dress and often just made it to the sofa and no further… months turned in to years… after a while I began to recover from my flair slowly making my way back to some kind of balance although even this was nothing like normal but I wasnt constantly dependant just mostly… lol
During this time J got himself a job working evenings so he could be around to help me during the day. If there was an award I could give him he would be buried under the weight of them…

I decided to try college again and get the elusive PGCE two weeks in to the course I found out I was pregnant which although daunting wasnt so hard as the pregnancy hormones relived many of my fibro symptoms and I was used to being tired… my son was born at the end of my first year and was cradled in my arms while I typed with the other for most of my second year.
J was amazing looking after our son and me and working with little complaint…

When I became a qualified teacher I got a job with the local college on permitted work at last feeling like i was contributing to both my local community and to the family…all was good till ESA came along and I was found fit for work which of course im not… being able to do five hour’s a week does not make you fit to do 30… I went self-employed as I was encouraged to do by work choice everything seemed rosy till J became ill with cancer and im sorry some of this you’ve heard before but im getting to it…
Now having been off work for 9 months while getting over treatment and complications having gone back to work we are faced with quite a bit of debt not least of which debt from housing benefit cock ups… but J now faces redundancy which brings me full circle back to being a burden my total monthly income before tax credit or housing benefit is £150.00 I get low rate care DLA wich is £80 odd a month im struggling to get enough energy to work enough in my business to make it pay at all and at the moment it owes me in materials but now im faced with no income to put anything in my business its a horrible catch 22…

During all of these 18 years we have never had any careres allowance nor care support…

I have found myself wondering if fighting to work the one morning I now do and fighting to keep my business is fair to J if I was on esa id be on nearly twice what I earn now not because it’s a high paid benefit but because im to ill to work enough to earn anything…

Which then brings back the old ghosts those thoughts you try to hide you dare not admit to anyone because you think they may label you or lock you away… and the reason I try to avoid thinking about how my health effects others… the little voice that tells you, you have been a burden long enough that they would be better off without you. That if you were gone that maybe they could find peace and prosperity, if you where no longer part of that picture… that maybe just maybe its been you draining your loved ones that has held them back… it’s at times like these when your thoughts are dark and especially when you have a potential reason for them to go to really dark places…

That fighting to keep that little piece of independence feels less like inclusion and not being left to languish on benefits and more like the milestone around your neck that will drag you under…

Since writing this J was made redundant and has to have two more ops on his knee as his prostetic knee is broken and the tumour and orthopedic specialists want to kill the infection he has while they fix his knee.

In the months while waiting for his op he has been refused esa because I earn to much… lol… you couldnt make it up… so J is trying to sell his art instead and hopes to go selfemployed as soon as hes out of hospital… you can see his work at www.jonathanwilsonart.com
Dxxx

Hi peeps this is a post about Access to work inspired by Kaliya Franklin’s blog post

The ‘Scrounging Scum’ to ‘hard working, tax credit claiming, socially acceptable scrounging’ journey 

But it’s also a way for me to get some stuff out there so it’s not only in here anymore… *Warning* it will be long…

As most of you know I have Fibromyalgia among other things…

In 2009/10 I first realised something was going to happen to my Incapacity benefit… that I would at some point in 2010 be reassessed for something called ESA… Having a fluctuating condition, I quickly came to realise, having listened to accounts of the process my friends had gone through that it was unlikely  I would get through as I had been working on higher permitted work for three years so I started to look for alternatives.

I came up with the idea of starting my own business as a designer maker and keeping the teaching job I was doing… So I signed up for work choice that was a rocky road to say the least they where just not set up for self employment… My business has yet to make any money… sigh…

During this time I made my first application to Access to Work… to find they couldn’t help with my job because I had found it myself and hadn’t used Job Center Plus to get it so I fell at the first hurdle.

Next came the application for help with my business… I phoned Access to Work to start the ball rolling but because I was with Work Choice they wouldn’t accept my application and re directed me back to Work Choice. Work Choice said they didn’t deal with Access to Work and knew nothing about it… Fell again at the second hurdle…

In October 2011 I went P/T self employed, I had no funding and no stock so spent the winter months making work as and when I could afford materials and doing small local craft shows.

Towards the end of my first year in which I had made lots of work and had managed to go to several craft shows I decided I really needed support from Access to Work so contacted them again. This time they passed me to an adviser who asked to have details of the travel I expected to do in mileage and cost as well as time I might need a support worker and approximate cost along side any equipment needs I might have, I came off the phone thinking how am I going to work all that out… I was at a bit of a loss…

During this year my partner  J had developed a painful knee and had been in and out of hospital for tests and scans, some of them in Oxford, we live in Cornwall.

Then J was diagnosed with bone cancer (2012) a very rare one and he had to have a serious operation to remove his knee and a big chunk of his upper thigh bone and some of his shin bone and have them replaced with prosthetic metal implants the upper rod almost reaching his hip and the lower rod going half way down his shin bone… (*try to remember this description for later)

Access to Work and pretty much every thing else was forgotten at this point, though I kept my job going as I realised my two and a half hr job and my P/T business would soon be the only income we would have.

Just before his op I contacted Access to Work as I realised I was going to need help because not only would I need to keep my job but my Partner would no longer be able to care for me or my son I was going to have to do it all…

When I phoned my adviser there was a message saying he no longer worked for Access to Work and I should contact the main office… I had to start all over again… I phoned and was told an adviser would phone me back…

They never did…

After the op J came home it had been hard coping on my own with a little help from social services, while he was away but having him home was hard to as he could hardly walk and was on a lot of pain medication…We settled in to a routine when two weeks later he developed symptoms of a tummy bug… I had to fight the GP to get him to come out… My partner was rushed to hospital with pneumonia and two blood clots on his lung, he was in hospital for another week…

Christmas was just round the corner so I had to do some craft fairs as this is one of the busiest times of year and I needed to try to make some money…. Once again I considered contacting Access to work but I just didn’t have the time. J was still on Statutory Sick Pay so we where doing ok…

January  2013 came and J started to feel cold all the time we thought it was just the weather, then he lost his appetite after a few days I said you need to see the Dr, so we booked an appointment… The morning of the appointment J collapsed in the kitchen his leg had gone very red, I rushed him to the surgery and the Dr saw him straight away… she called an ambulance which we had to wait an hr for they where all busy… in that hr J went from sick to very sick and in extreme pain… when we got to the hospital they kept him in A&E for several hrs, then suddenly started rushing about giving him meds they thought he had an infection… over the space of the next ten days we nearly lost him a couple of times he was delirious with the pain because they couldn’t get it under control even with very strong meds and their was little to nothing I could do to help except be there as much as I could trying to share his pain… he had two wash outs to try to get the infection under control… they basically opened up his scar and jet washed the tissue and prosthetics to get the muck out… it didn’t work and he got sicker again… at this point they transferred him to Oxford, I knew how sick he was and how close it had come to losing him so this was really hard as I couldn’t go with him… I had to try to keep things as normal as possible for our son and try to keep my job going… He was in Oxford for a further twenty odd days and had another wash out… The bone infection specialists devised a treatment of combination antibiotics administered via pick line, which started to work and he started to recover, we managed one visit while he was there but it was very hard on us all being so far apart…

J was in hospital for just over a month, leaving me to manage on my own… just as I need to be doing my tax returns lol… it doesn’t rain less it pours…

When J came home he still had the pick line in and had nurse visits every day to administer his meds… they sent a large box of meds with him id never seen so may boxes of injections and tablets, our kitchen trolley looked like a chemist shop… he was very weak and it took a lot of time for him to recover but the med combination worked and he eventually started to pick up and they removed the pick line and put him on meds by mouth…  a combination of two antibiotics twice a day specialised ones to combat the bone infection that likes to live on prosthetic implants… He’s still taking them now a year later…

By this time it was April 2013 and J’s SSP ran out and he applied for ESA, he was very quickly sent an ESA50 (within a couple of weeks) we went through the process of gathering his info and sending it off (exhausting)… the new crafting season was beginning… I had been trying to make new work all this time but it was difficult to get as much done as I would have liked… the notion of Access to work crossed my mind again but to be honest it seemed like more work than I could handle having to do all the leg work myself just wasn’t possible…

I had also started the Stats Campaign with Jayne Linney during the last couple of months as I needed a way to channel my anger and frustration at our misfortune and the treatment of the disabled…

In July J Drs decided his knee wasn’t bending as well as it should , as he could only bend it 35 degrees… So they decided to do a Manipulation Under Anesthetic (MUA). This was done in Oxford again and was supposed to take three days… unfortunately the op went badly and his scar was torn open and his quads tendon was damaged this is the one that keep your thigh muscles in place with out it your muscles would be like a rubber band rolled up round the top of your leg… our physio is good at graphic descriptions…lol  they had to open his scar up and repair the damage… he was in hospital for another week…

When he came home he wasn’t allowed to bend it for a few weeks and had it in a full leg splint… at the end of August a year after diagnosis he was allowed to start physio and began to bend it in a bending full length splint…

In Sept 2013 over two yrs since his first problems J went back to work, still on two crutches with a full leg splint…having never heard any more from ESA, he hadn’t been placed in either group and hadn’t had a WCA… J’s work offered a sit down day job, as part of his reasonable adjustments because his job involved standing for eight hours (*remember the description of his prosthetics) and walking about but they assured him they would find him a sit down job and on days as he could no longer ride his bike to work to get to work on the evening shift. He would be allowed a graded return all of which sounded possible… The works Drs assessment stated this was how it should be done…

We contacted Access to work about his transport and mentioned he’d need a in work assessment…

J started work and was put straight back in to his old job…

On his feet for the half a shift he was doing and they supplied a chair on wheels that J found dangerous to maneuver with one leg as it was like paddling with one paddle he kept going in circles… this continued… J complained that he couldn’t do the job… his work just said your not using the chair enough and that he was his own worse enemy… all this was done on evening shift… Slowly his hr increased to full time over a month, so did his pain and swelling, preventing his knee from bending at all… In September J applied for Personal Independent Payments… here at the tail end of February we still have heard nothing from the DWP about his PIP application…

Access to work sorted paying his transport but failed to do an in work assessment…

We phoned… they said we needed to re apply… Aaagghhh… We reapplied weeks went by nothing… We where told they couldn’t contact the company to do the assessment, J told them not to bother… he had lost hope, hope that they could help and hope that the company he had worked for over ten years would let them help because they clearly didn’t care about the pain and damage they had caused him… he got really low… so did I but I couldn’t show it…

In November we went to London to visit Parliament… 🙂

January 2014 came and we learned that we had been massively over paid by Housing Benefit despite offering to give them everything they needed and giving them everything they asked for , the same week J was told he was up for redundancy, just five months after getting back to work and being tortured by his boss who happily told him one day ‘I had a bit of knee trouble once it got better”…

During this last year our son has been assessed for sensory issues and is now being assessed for Autism… his OT thinks we have to work a lot harder as parents than someone with kids that don’t have his problems. As parents of an only child we thought all kids where this difficult… bless him we are still fighting to get him the help he needs at school…three years and counting…

and then my computer died… 😦

So we have had no assessment for ESA, limited help from Access to work and no news from PIP… and plunged in to huge debt by HB…

The support system for helping the sick and disabled work… doesn’t work!

Now it’s close to a new crafting season… Do I apply for Access to Work?

I know this was long I make no apologies, some things just have to be said out loud, I never want to forget what theses past two years have been like because it drives me to fight for others.

I want to say thank you to the staff of Tralisk Hospital Truro a hospital that often gets bad press but saved my J more than once and me and our son in the past, and The staff of the Nuffield Tumor team and the Bone infection Unit for saving J from the cancer and the bone infection… with out the NHS J would not be here…

I want to thank J family and my family for all their support and help this would have been a lot tougher with out them…

To his boss and his company I want to say Agghhh you ass holes… but I doubt ill get the chance… 🙂 And just so there are no doubt about the pain they caused him ive just found this lovely pic of his prosthetics… its not the full leg which is a shame but you get the picture…

J's Prosthetics

J’s Prosthetics

There are new things a foot… the stats campaign is ongoing… I’ve started a new Fibro campaign with fibrogirl called for the moment FibroMe ForAction, and I’m working on something I think might have been over looked, I need to work on that…

Thank you for staying with me I need to go wipe away my tears there hasn’t been much time for them in the last two years and I needed to acknowledge in some way how crappy its been so I can move forward… J continues the meds and is slowly getting stronger… I’ve been in a massive flair since Christmas and quite low but I’m beginning to come back so watch out IDS I’m not done with you yet… Dxxx

PS i believe the National Service Bill gets its second reading tomorrow lets hope it dies…

Hi Folks its been a long time and ill do a blog post soon that explains that,

but first

A new project… Myself and fibrogirl with a group of other campaigners are going to start a campaign for the correct classification of Fibromyalgia and ME.

This was triggered by a hastily removed article yesterday that stated the FM and ME, CFS could possibly be re classified as mental health problems. This was very quickly denied by the world health organisation, but they stated there would be no change to the FM ME classification and the problem with that is, that they are not accurately classified now. So the upshot is a new campaigning group utilising some of the campaigning experience gained by working with the We Are Spartacus Campaign in the hope we can raise this issue and work towards better treatment for us all…

FibroGirl has done a blog post update which explains whats going on and how you can get involved…

Sorry ive been gone so long I will do a post soon that explains where the stats campaign is at and why ive been absent… Dxxx

Heres FibroGirls blog please read and come join us… http://but-you-dont-look-sick.blogspot.co.uk/2014/02/fibromyalgia-me-call-to-action-update.html?showComment=1392316106857

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