THAT CHRISTMAS

That's what it will always be known to me as .. 'That Christmas'!

That's if I survive long enough to be able to reminisce that is.

Woke up and it's only Christmas Eve and I woke up with anxiety. My daughter was asleep on the other sofa but she said something strange when she woke up.

"You was having a fit when I woke up earlier" and I was confused and said "Eh?"

I was told I was shaking. Something to tell the hospital I guess. Whether it's connected to anything to do with my heart or chest I don't know. There is also the fact that I have been waking up almost every morning with anxiety and I wonder if it's connected to that but separate from the heart or indeed maybe connected in a different way?

As I said .. something very bizarre obviously goes on while in asleep because I wake up with anxiety before my conscious brain had even had a chance to process any worries or concerns.

Christ, in feeling it before I even realise I'm still 250 miles away from home!

It's just there.

Whenever I'm affected by it is always just there first thing in the morning.

But Fibromyalgia is the lack of a certain type of sleep .. a deep sleep where everything gets sorted, repaired and memories cleared out.

So maybe the brain is still going through the worries and so it reaches a tipping point after a certain amount of time?

Oddly my sister informed me not long ago that she gets something similar when she is stressed about something.

With me though it's always strong or over the top ridiculous.

There are always three things you absolutely pray for .. if you know your stuff ..

Sodium oxybate which is the only thing to deal with not just the anxiety but everything else to do with Fibromyalgia. This may also be the case with Chronic Fatigue Syndrome and Chronic Regional Pain Syndrome? Had that theory for a while now.

The second thing you pray for is to be given a drug that actually works on the anxiety. Nothing much has and presently Diazepam is used but has not been enough on occasions.

The third thing you pray for is death.

Yeah it can actually be that bad that you just want someone or something to flick the switch and turn it all off.

There are other things that can stop it.

The situation and sudden loss of finances while trying, or was planning to, work my backside off, started the situation off.

Now this has three chances of altering .. sorry, no four. But they are all up in the air right now and not looking to appear to be working just yet.

But I'd hoped that the developments would be enough to calm things down. The trouble is they do but it only ever seems to work for somewhere between a couple of hours to around a day or two.

I think the issues here is that the worry that they will not work out starts to creep back into your mind. This is subconsciously and nothing you can do about it.

It's become clear to me over the years that the interior of the brain is a very delicate and potentially hazardous and painful playground.

The brain is the nerve centre of everything and is where pain is processed.

When people first started to realise that there wasn't anything wrong with the feet or other parts I experience pain they would have the attitude "Oh well there's nothing wrong then?!" Where I would then point out that the was and that when their for hurts is the brain they processes it. If it's doing this wrong then it doesn't matter if your foot or feet actually have anything wrong or not .. the end result is exactly the same. The pain is the same.

At first they would look confused until I explained .. slowly that they might rub their foot in pain but the signals are received in your head. If your brain is receiving the signals then it's receiving the signals whether these are correct signals or false signals.

It's like the opposite of those stories you hear about people who are drunk and walk home with a broken limb without realising it. Those signals were not being received our dumbed-down because of the alcohol.

In fact I've wondered often if alcoholics are people that had conditions that were not correctly diagnosed or sorted by the NHS? It would be bloody typical of their attitude of this turned out to be the case years later.

I've thought about different drugs to stop feeling like I do. Mostly I always tell myself to hold out before trying drugs or thinking about suicide.

But there is only so long you can last. There is only so long anyone can put up with this. No one is impervious.

I'm low or out of diazepam and am tempted to look .. memory issues see? Can never remember what I've got of anything. There aren't many, that's for sure. Some pills I'm missing completely though there may be some at my flat I've not been able to get back to? I'll try to do that.

But in three days I have a hospital appointment for some tests and I have to be sure not to take any diazepam that day. I actually need my chest issues to play up .. which they should. They do most days. Well .. since I've been here they have. Well .. since I realised I was going to be missing around £3,000 to £5,000 in money I was expecting. I really do wish I'd known that one! Or hadn't had £35,000 stolen from me because I wouldn't have ended up feeling like this.

One of my family has been told to report the inheritance theft to the Police and maybe they will and maybe something will be done about it?

But it's a shot in the dark and not about to happen anytime soon. I don't expect anything to come from it, if I did I wouldn't feel like I do.

Same applies to my PIP being reinstated though that would be quicker it's still a month or two away.

So you still need something in the interim and a plan in case it doesn't work out.

Then there's the carer idea which was why I came here.

It was obvious that my daughter had some of my Fibromyalgia symptoms and they just kept on coming. The feet being affected is one of the few that she doesn't have.

She got home with a panic attack just two days ago.

Now she spent last night talking to a nice lady that lives next door. She had been through she pretty horrid things, used to be a teacher and had a little girl in a bad way. She also seems a little different from the norm around here. Polite, reserved and well spoken.

I was told last night and still need to ask what was said but she went mad when she heard about the situation.

Now in not sure how she is going to do it, what with her own issues and vulnerable child, but she said that she was going to go down to the .. well, council I presume and get them to sort out this bare house for her and help her move home.

It's been a secret panic of mine but I've not mentioned it to anyone.

I also don't really have anyone to talk to, visit our even anywhere I can escape to, to take my mind off things. The flat doesn't work because I'm alone with my new found fears.

The three cancer scared, the Fibromyalgia, two cases of Autism from four, puberty and a house nowhere near suitable.

Then there are my heart issues and my blood pressure issues which are running riot lately.

My father died at 56 and it's clear now that it was blood pressure related. A burst aneurysm and the blood pressure made worse by a certain large TV corporation setting him up to be something he wasn't. They knew it too.

But my symptoms are far beyond that of my father's prior to his death. My grandmother died of the same Fibromyalgia related thing and oddly her symptoms were similar to what I'm having now and have had for months.

There was one thing they had in common just prior to their deaths .. their legs, or more specifically lower legs bloating. A water retention type thing.

Every now and then I glance at my legs or had expect my trousers to feel unusually tight. If I do I won't have long, that much I can tell you.

My grandmother was supposed to die of heart failure and my father's aneurysm was near his heart and burst.

I've got my grandmother's leg issues and both their chest issues.

Plus I have a shed load of things that they didn't have .. at least I think?

So this is only Christmas Eve .. a bunch of stuff was opened and the room was a mess with trodden in biscuits, because they cannot take them out one at a time. Well some of them don't. Another one asked me to open another tin of biscuits four times and had already had a load of them given to him by his other. I guess he thought no one would notice that he had eaten most of them if he split the requests of tin opening among the two adults.

God knows what tomorrow is going to be like?

I normally use the cupboard under the stairs, not not in a Harry Potter like fashion .. to access things like my pills. But my daughter has not liked it being opened as it has been filled with Christmas presents. So I tend to wait until late and then I forget things. Especially at weekends and holidays when the kids are allowed to to stay up much later.

At the new house I might have a box room to use for as long as I am around anyway?

Along with the anxiety and worries I am praying I do not have a repeat of yesterday which was .. bloody horrendous. I have been worried about incidents like that since I have been here but though I had a couple .. yesterday was .. bad.

At least the new place .. of we ever manage to get in there .. somehow .. there will be two toilets so I do not have to worry if I have to die slowly in a toilet for several hours. Well .. other than .. dying in a toilet for several hours in pain.

Friends came over for half an hour .. turned out to be a couple of hours and a few drinks. Too many .. or rather the wrong drink for my daughter who had a strange chest pain and numbness down her arm who then disappeared as she went and laid down on the bathroom floor for ten minutes .. after taking an anti-histamine tablet. I thought they were just for hay-fever but then the hospital recently sent a letter prescribing them .. now I need to look them up. Told they are good for heart and chest problems .. be bloody great if they work.

I have told visitors here many, many times that people simply do not get it and therefore neither do the readers .. so do not get told by me .. how about a quote?

However, there is evidence that chronic pain and illness put patients at risk for suicide. An illness like fibromyalgia or chronic fatigue syndrome, which is often doubted or neglected by the medical community, the public, and sometimes family and friends, can present unique problems. Patients with FM/CFS can become victims of isolation and despair.

-http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide

I also stated previously that I have believed for a long time now that Chronic Fatigue Syndrome, Fibromyalgia Syndrome and Chronic Regional Pain Syndrome are linked and may well be the very same thing but at different levels?

How about a link mentioning all three?

http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide

One of these days many people are going to realise that I get things right a great deal and as near as damn it the rest of the time.

Due to the fact that antihistamines also can play a part in anxiety control I have come across some websites to do with .. anxiety and found some .. things .. organisations and I m going to try and contact some because this needs .. sorting!

THE ILL & THE DREAD

Oh I do not like the feelings I have this morning.

It is not nice at all and very, very weird. I feel a bit ill and I feel a bit of anxiety and it is the strongest feeling of anxiety since I started taking those Propranalol beta-blocker pills.

That is not encouraging.

At the same time I am having real difficulties doing my usual things just as I feared I would when I was basically hoodwinked and conned into looking after someone's pets. Before they went away I was visited two days before departure and was asked to put the kettle on and I answered “Sorry, I have forgotten to get milk for three days”. Well they left on Saturday and that was two more days and it is now Tuesday and that is another three more days and guess what? I do not have any milk still.

That is how it can be.

On every other day I am not at the house I keep panicking I have forgotten something at the house.

The first day I had to get out my second bike and I forgot it was likely it had a puncture. Why did I use my second beaten up bike and not my shiny newer bike? Because I knew I would not be able to do the jobs I was hoodwinked into doing without it. He went away a few months ago for a week and I did exactly the same thing then, went there every other day and it nearly killed me. Despite the fact he lives fairly close to me. About half a mile I would say. Ten minute or so walk … hard to judge because I do not walk reasonable well and always limp. Walking, or rather limping, on consecutive days is normally bad news for me. I have been lazy as I have not used my bike much this year partly because despite being at either ends of the house they are both a pain in the arse to get out due to my house. Partly because the weather has been utterly terrible.

So I got the bike out on the first day they were away and I changed the inner-tube. I cycled to a different friend and chatted for a few hours before going around the house to feed and water the other pets. He has a son that is a bit .. of a problem and not really with the rest of us when it comes to common sense. What he used to do was drive me nuts to get into the house when I did this several years back. One of the reasons I fell out with him for several years was him expecting me to do all this crap for him, the friend that is. I remember that before my friend had even reached Crete I was getting phone-calls about getting in the house.

This son is a problem, he flies up and down the stairs and in and out the house letting doors slam or not closing them properly. It is like he literally has a one track mind. It was really weird to witness. My friend was always going on about him and at first I thought he was being over dramatic, but no. He would often leave the house and leave the door wide open, and I mean leave the house … go off to a mate's house for hours. He used to smoke Cannabis a lot and my friend thought it was all down to that and Cannabis destroys your brain, as some would love to like us believe to suit there needs. I pointed out that it was not this and that his son probably needed to talk to someone and be investigated. Putting it as politely as I could.

This kid also thinks he is going to be a big rap star. He is well into his twenties.

He also now actually has a girlfriend and even a child with her and they live elsewhere but for some reason there are a couple of important things of his left in his old bedroom.

So on the Saturday morning before my friend has reached Crete and I am changing the inner-tube on my bike the phone rings. I miss it and then I get a text from an unknown number and it simply says 'Are you going to my Dad's house today?' Yeah like that is supposed to explain who it is but luckily I know this kid all too well and realised it was him.

I told him not until 4pm.

A little while later I get another phone-call fro the boyfriend of my friend's daughter who are going there on the days I am not. O yeah, I forgot about that. When I was saying 'no' to looking after his animals he told me he had made it easier for me as he has his daughter and her boyfriend going there one day so that I only have to go there every other day. I was a bit annoyed with this and said “How is that supposed to help me? I am still coming here every other day which was what I was doing when you went away last time that I could not handle it!” Of course just like of old when he wanted things his way I never got an answer. S the boyfriend called me and said “Have you heard from [the son] about getting in the house?” I ten told him that I had before he went on to say that he had asked his sister for the keys and when she told him no he got frustrated with her and upset her.

The girl has her own problems and upsetting her is not a good idea.

So two of us have been put into a situation that is not good for the heath of either of us, lol.

I told this guy that we were going to get a lot of this.

I got to the house at 4.15pm after speaking to a mutual friend about it. I had been asked why I had agreed to this by several people and how wrong it was to put me in this position. How was I expected to refuse him entry or get him out when I let him in?

Oh. I am guessing that you have worked out that for years the son was not allowed a key to the house while my friend was on holiday? For the obvious reasons.

So the boy knows, is told each time his Dad goes away why he is not allowed a key, told he is not getting in the house and told to not drive people nuts about getting in the house. But always does drive people nuts.

I told this chap on the phone that I remember him on the phone to me the very same day that our friend went away on holiday four years ago the very last time I did this.

We are still on Saturday here, lol. The first day, lol.

Anyway when I finally got to the house around 4.15pm there was no son waiting outside. Well, I thought, it could not have been that important. Around 4.45pm the house phone rang three times which was unusual. I thought 'I bet it is him?' Then my mobile started ringing, yup it was him. It is now 5pm I told him I would be there at 4pm, he is half a dozen miles away with no car and now wants to come to the house. The house he does not live in any longer. I said … 'fine, I will be here' and ended up watching a documentary on volcanos. Some forty minutes later he then phones me, says he has stuff happening there and cannot come. Perhaps a girlfriend who is asking him why he is about to pay for a taxi to get home to do some rapping to two sings then come home again?

You think I am joking? I did say he has always thought he was going to be a big rap star, lol.

He once had an argument over not finding a job because he as going to be a big rap star and would not have believed this myself had I not been there to actually ear it myself!

Eventually I leave the house on my beaten up bike I got out and changed the inner-tube on so that I could lock it up at Sainsburys on the way home without worrying about it being nicked. Only … as I was cycling away from the house I thought … 'why does the front of my bike feel spongey?' and looked down to see I had a tyre with very little air in it and I had the wrong air pump to the wrong bike.

Straight home and no Sainsburys and no milk and other bits I needed.

Now it is Tuesday and I still have not go milk and last night I came home too buggered and I also realised I had hardly eaten anything. If you can count two cans of Monster,, oooh yeah I am feeling thirsty all the time, and four Twirls. Oh and a packet of McCoy's Salt & Vinegar Crisps. That was is all day. No food in the house and has not been for a week.

That was yesterday … Monday and only my second visit to the house to look after the pets.

How long is he away for? Only 5.5 Weeks. Yes that is five point five weeks!

So today I ave this feeling of illness mixed with anxiety, as I started of saying.

Only my life could be like this.

But then I never thought I would be here this year.

And yes that appointment in a couple of weeks because of the blackouts, seizure I had, hearing dropping off by around 30% (ears popping) and a couple of others that point towards a brain tumour? I said to someone it would be just soo typical of me that I will have all this shit to deal with after just being told something potentially traumatic.

Lol.

He does not return until three weeks after my appointment, though I am not likely to be told at the time I do not think. Unless they feel on the day after inspecting me and talking to me that I need a scan tat very same day?

I have not even told my mother yet who has just found out a friend of hers of many years as terminal cancer. A mother to some childhood friends of mine.

But hey, according to the DWP everyone is sitting around with nothing going on and can be fucked about unfairly and having their money cancelled unfairly.

Oh and I have meetings with Citizen's Advice an appointment for a colonoscopy I am still waiting for and of course a visit to the local council and a bloody form to fill in .. and documents to hand over and anything else that crops up over the next five weeks.

Plus my normal fatigue getting far worse and let us pray I do not lose the use of my legs again!

It is annoying at times because you feel as if either people do not believe your Fibromyalgia, do not realise what having Fibromyalgia is like or simply just do not care and are selfish? I just do not know.

The ill and the dread is all I seem destined to have.

THE LAST GREATEST MEDICAL COVER UP

Would you be surprised to learn that the title is not mine?

I am having another rare good morning with little in the way of trouble .. knock on wood.

I had just checked my emails and have written out a report of a recent sequence of actions I have taken that I intend to publish at the weekend.

Parts of the report show a number of days and I want the days to build up before I publish the report you see. After all everything I do is a test as much as it is genuine. The genuine stress test site only in this instance the word 'stress' has a double meaning.

I am still awaiting some important replies from several organisations that simply have not arrived.

I had also discovered and probably forgot to mention that in my recent surge for research data that one website for Fibromyalgia, FMA UK, was stating something about a documentary being done about how the DWP treat people, obviously badly, with Fibromyalgia Syndrome. Turned out they were filming in the first two weeks of April or something so I had missed it .. typical.

But then I thought i had better keep an eye out for this documentary appearing on TV. Only this morning I started wondering if I had looked at the year this was supposed to be and might have been old and I missed it. So I actually started looking for it.

In my search that was in vain I came across two separate interesting things and the first was a film that premiered at the London Independent Film Festival Opening Night Gala and the poster for said film did not mention him by name but had someone that looked a lot like the late Alan Rickman.

It is about a Cellist who develops Fibromyalgia that basically destroys her life and it is called Sonata for Cello.

http://www.fmauk.org/latest-news-mainmenu-2/articles-1/1071-premiere-of-a-film-about-fibromyalgia-london-14th-april-at-6-pm-bookings-now-open

Carrying on with my research I then spotted that line in the title on a page of a Fibromyalgia sufferer called Donna and her site fedupwithfatigue.com and a sufferer of Fibromyalgia and Chronic Fatigue Syndromes, though I believe the two are the same thing. Fibromyalgia just appears to be the same thing as Chronic Fatigue except with more symptoms and I think that is how these two arose separately.

Anyway .. down her page you will see a section called 'Watching & Listening' and then see the title I have here as a link. Now it gets a bit odd. The page is listed as news for January 2016 so not that old and the link is listed as a newish UK documentary. Only when you click on the link there is no video and YouTube states the account was closed down?!

http://fedupwithfatigue.com/jan-11-2016-fibromyalgia-news/

& ..

https://www.youtube.com/watch?v=z7CE3K6MmfA

I found another website that stated that Fibromyalgia was bought up with Members of Parliament recently in the House of Commons, I tin tat is where it was. But I have navigated away from the damn page and cannot remember where it was or what it said!

Very suspect, lol.

IT IS ALL ABOUT THE MONEY

I was just explaining to someone earlier about how much debt we are in, how long the cuts have gone on and how long it will take to get out.

We wont get out because they go after the money in the wrong places, people with health conditions, disabled people, unemployed and the low paid. Very little money has been saved in comparison to how long we have now been at this.

So then how about going for it in the right places?

I stated that if Doctors, Hospitals, general Practitioners and Nurses have been asked to lie, lie and lie again then ... why have them at all?

I mean surely to God money will be saved a damn site quicker if you just shaved everything back to its bare essentials until you rebuild something better and more efficient?

How much money is being wasted employing people to say 'no' or 'computer says no!'?

The answer is; an effing lot!

So due to some things going on I have been looking around researching some things when I came across this webpage to do with drugs for Fibromyalgia. It is on www.drugs.com but will place the direct link below.

There is a long list of drugs that is something of a surprise to me and then some. Of course Lyrica, Pregabalin, is one of the most taken drugs as it is one of the best, but not the best, drug for the condition. 

Milnacipran I have discovered works a great deal better than even Pregabalin but this was refused to be allowed for Fibromyalgia by Europe! You know ... Europe!!

That same Europe also disallowed the one and only drug to deal with the root cause of Fibromyalgia, lack of restorative sleep, which is sodium oxybate. In effect it is a sleeping drug. Except it is not allowed because ... well basically it works too well.

But I hear you thinking ... but wait a minute? There are loads of sleeping drugs on the market? Are there? Because I have taken several and they did not do a damn thing. Well except for a whole string of people in a line making money out of it though. Apart from that the drugs do not work ... unless takenm in a very high dose along with tranquilisers. I know this because I have done that!!

When your desperate and those tasked with helping you do fuck all then desparate times means desperate measures, I am afraid to say.

I did not know about Cymbalta, or duloxetine but have Savella, or Milnacipran.

Tramadol is a suprise addition to that list because a pain specialist told me it would not work on my Fibromyalgia over two years before Fibromyalgia was diagnosed ... yeaah I am going to let that one sink in a little tiny bit ...

If and when you look be careful as some drugs are listed twice .... Lyrica, which is Pregabalin, is listed along with the drug in its chemical name ... errr Pregabalin. Meaning close to 500 people reviewed the drug for the condition and by far the highest on their.

Except I cannot tell you what it is like because I have been refused it for three whole years.

Anyway if you have Fibromyalgia or Chronic Fatigue Syndrome you might want to use the last below. Many of these do not work or only work minimally for me but they might work for you?

Oh and one last thing ... if I wanted to use the system to get money then when accused of being mad and need psychiatric treatment by a previous GP, because he was a liar and a wanker, then I would have said ... YES!! Dumb arses!

Just wanted to say that one last thing, lol.

https://www.drugs.com/condition/fibromyalgia.html

FIBROMYALGIA SYNDROME BREAKDOWN

It has been a long time since I published any details regarding my symptoms and findings for people with Fibromyalgia that come here.

So I did a list, and I included my other odd symptoms, a detailed breakdown of the condition along with the drugs I take as well as those I am supposed to take.

Remember and for those that do not know or narrow minded, regardless of what you read or find there is only one single solitary drug that works on Fibromyalgia and all of its symptoms. Just one for all potential 200 symptoms.

As anyone with Fibromyalgia will tell you, including those I am told never get out of bed at all, it is a horrid condition. Just think about it, any number up to a potential of 200 symptoms? Think about what having quarter of these symptoms must be like?

In my case I get over half of them!

There will be people far worse than me!

I learned how to deal with my own condition and later found out that this is what they tell sufferers to do, like cycle and light exercising.

Unfortunately and for well over ten years this caused hell in my life as family and friends thought I was making things up. A couple years back I bumped into a nice Scots fellow online, now on my Facebook list, who had the same condition with the same effects on both family and friends.

Yet he had suffered for a couple of years. Two or three if I remember and that in itself is bad enough.

But imagine what 13 years is like?

I would LOL if the memories of it, what few memories Fibrofog leaves me with, were not so bloody bad. Lol.

Ailments list, Cause, on Medical records or not

PAIN

• Both Feet (Plantar fasciitis symptoms in reverse, Fibromyalgia) – ON RECORD
• Metatarsalgia, left foot
• Both Arches (Fibromyalgia) [two pains, one stab one ache] - PAIN ON RECORD
• Both Ankles (Snapping, Achilles Tendinitis?) - PAIN ON RECORD
• Right Knee (Physical Problem) _ PAIN ON RECORD
• Left Knee (Less than right, Fibromyalgia)
• Hips (Fibromyalgia)
• Groin Right (Inguinal Hernia repair) – ON RECORD
• Middle/Upper Back (Collapsed Discs) – PAIN ON RECORD
• Base Neck (Osteopenia/Fibromyalgia Source region) – PAIN ON RECORD
• Outside of right hand ache
• Locking middle TOE left foot (Inverted) – PAIN ON RECORD
• Night Cramps (Calves) – ON RECORD
• NOTHING IN ARMS (Thank God)

PROBLEMATIC

• Memory Loss (several daily, Fibromyalgia, Fibrofog) – ????
• Vomiting without warning (Oesophagitis but Fibromyalgia though memory theory?)
• Heartburn (Hiatus Hernia 20 yr, Fibromyalgia through memory theory?) - ON RECORD
• Nausea Blacking out Standing (Postural Hypotension, pain behind eyes) – ON RECORD
• High Blood Pressure (Fibromyalgia)[from hight to low above-blackouts] – ON RECORD
• Sensations of seizures (normally when standing but while falling asleep lately)
• Insomnia (dogged for over five years, OK last year) – ON RECORD
• Get tired in Body
• Mind always on the GO

EMBARRASSING

• Skin Conditions – ON RECORD
• Scalp Condition – ON RECORD
• Oral problems (an ace) – ON RECORD
• 'Too embarrassing to mention' problem (bleeding) – ON RECORD
• Diarrhoea – ON RECORD
• Constipation – ON RECORD

OTHERS

• Feeling, irritation above right eye (feels like lump)
• Varicose Veins
• Tight feeling hamstrings
• Aching calf muscle, right leg
• Occasional shaking hands
• Heart Palpitations
• High Cholesterol

INSIGNIFICANT OTHERS I HAVE FORGOTTEN ABOUT

• The number is unimportant but there were in excess of 100 when I went though a Fibromyalgia checklist of 200 symptoms
• There is another more complete list that exists on this blog from a couple of years ago, do a search on Fibromyalgia is your interested
• Had periods of depression and anxiety I just remembered so there are two! Lol.
• Symptom does not always mean pain!

DRUGS

• Methocarbamol (for back pain, latest and seems to be very, very good!)
• Tramadol (for Back Pain)
• Gabapentin (for Fibromyalgia)
• Amitriptyline (for Fibromyalgia)
• Atovastatin (High Cholesterol)
• Ramipril (High Blood Pressure, still 170 give or take)
• Lansoprazole (heartburn, had many different types)
• Metoclopramide (for nausea)
• Quinine Sulphate (for Night Cramps)

DRUGS ACTUALLY FOR FIBROMYALGIA

• Sodium oxybate (only drug that provides RESTORATIVE SLEEP, i.e ONLY DRUG!)
• Milnacipran (research shows it has better effects on the pain in Fibromyalgia)
• Pregabalin (modern version of Gabapentin not meant to cause illness, nauseas side effects)
• First one not allowed, except for Narcolepsy
• Second and third NOT APPROVED?!

EDIT: VERY SIGNIFICANT TO FIBROMYALGIA DIAGNOSIS

Completely forgot about these lately as had no issues, 48 hours after typing this had pain putting kettle on one morning!

• Pain on Upper Side Shoulder Joint (raising arms more than 10 degrees)
• Lump feeling Under Side Shoulder Joint (arm pit, wearing pullovers or even t-shirts)

ALSO FORGOTTEN

• Had Costochondritis (You really, really do not ever want to have this and I constantly fear its return, when I do manage to remember I had it! Hurts like hell the more you breath in more than around 33%, wondered if oxygen would help?)

BREAKDOWNS

• Kink in the central nervous system I the neck
• Gets kinked even further, physical injury, whiplash
• Scrambles signals to brain (does not CREATE signals, i.e, MAD)
• Loss of restorative sleep
• Any combo of all bodily functions not kept in check
• Prognosis is this will get a lot worse getting into older years
• Had it twenty years
• Asking about it 13 years
• Doing fuck all about it now and as it is getting worse!

So this is only part of the reason I spent 15 years keeping records and the last 8 recording everything and the last 3.5 years publishing most of it on here.

So I believe that Chronic Fatigue Syndrome is the early stages of Fibromyalgia Syndrome and therefore the same thing. Because one seems like the other with a longer symptom list.

EUROPEAN MEDICINES AGENCY - RESPONSE AND REPLY

Well I finally got a response to my questions of why sodium oxybate and milnacipran were turned down for use with Fibromyalgia.

Rather bizarrely they have responded and included Pregabalin with these two which, though I mentioned, is cleared for use with Fibromyalgia as far as I was aware!

Now if I missed something here and Pregabalin has not been cleared for use with Fibromyalgia I am a bit confused as to not only why I was told I would be prescribed it but that not a single GP or specialist I have mentioned the drug to has replied that it is snot cleared for Fibromyalgia.

Conclusion?

It is not cleared by the NHS for use with them and I was given a bullshit excuse for this too as they thought I had been told or informed it was not cleared for use.

Did they just let the proverbial cat out of the bag here?

Anyway I will now paste their full email response along with my reply ...


EUROPEAN MEDICINES AGENCY ..

Dear Mr Haswell

Thank you for your letter of 30 November.

The decision to apply for marketing authorisation of a medicine in a particular indication is not made by the European Medicines Agency (EMA), but the companies concerned. The Agency can only evaluate the evidence with which it is presented and can only approve a medicine for marketing if the benefits are clearly demonstrated and outweigh the risk of side effects. EMA’s assessments do not consider matters of cost and reimbursement, which are handled at a national level.

However, in the treatment of fibromyalgia, good evidence of effectiveness was not shown with sodium oxybate (Xyrem), pregabalin (Lyrica and its generic alternatives) or milnacipran when the companies marketing these medicines applied to the EMA to authorise such use.
In 2011, the company which markets Xyrem (UCB Pharma) applied to the Agency to extend the use of the medicine to patients with fibromyalgia. This involved results from two short-term studies involving 1,121 patients with moderate to severe symptoms and one longer term study involving 560 patients; the majority of the patients came from outside the European Union (EU). Results in the subgroup of patients from the EU in these studies did not demonstrate a clear benefit, either short- or long-term and there was a high incidence of side-effects on the brain and nervous system. As a result the EMA’s committee of experts responsible for the evaluation considered at that time that the benefits of the medicine did not outweigh its risks, and recommended against approving it to treat fibromyalgia. Details of this evaluation are given in the Agency’s assessment report at: http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000593/WC500106940.pdf.

With respect to pregabalin, in 2009 Pfizer Ltd presented the results of five main studies involving over 3,000 adults with fibromyalgia. Again, most of the patients included in the studies came from outside the EU. After evaluation, the Agency was similarly concerned that the benefits of Lyrica in fibromyalgia had not been shown in either the short or the long term in patients from the EU. There were no consistent or relevant reductions in pain or other symptoms in the short-term studies. In addition, the change in symptoms did not seem to be related to the dose of Lyrica that the patients received, and the maintenance of Lyrica’s effect was not shown in the longer study. At that point in time, therefore, any benefits of Lyrica in the treatment of fibromyalgia did not outweigh the risks of its known side effects. Hence, the Agency recommended that the change to the marketing authorisation be refused. For further information, see http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000546/WC500076177.pdf.

In the same year, an application was made to EMA by the company Pierre Fabre Médicament for the use of milnacipran to treat fibromyalgia. After evaluation of three main studies, involving 2,960 adult patients with fibromyalgia, the Agency’s scientific experts were of the opinion that the effect of the medicine was marginal. There was again a lack of data on the long-term effects in a European population. Therefore, at that point in time, EMA was once more of the opinion that the benefits of the medicine in the treatment of fibromyalgia did not outweigh the risks, and recommended against marketing authorisation. For more information on this, including details of the assessment, see under the various tabs on http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/001122/human_med_001313.jsp&mid=WC0b01ac058001d124

Should a further appropriate application for use in fibromyalgia be made for any of these medicines, the Agency would thoroughly evaluate any new scientific evidence presented, in order to reach a decision on whether to recommend marketing authorisation.
The Agency’s remit covers the scientific assessment of medicines and the monitoring of their safety once they are marketed, and we are unable to comment on the other matters covered in your letter.

A copy of this reply has also been sent to you by post.

Kind regards


Paul Blake

Stakeholders and Communication Division



MY REPLY ...

European Medicines Agency

I have received your report on the situation regarding the application of the drugs sodium oxybate (Xyrem), pregabalin (Lyrica, though I never said it was refused to be used only refused over money and this has been told to me by at least two Doctors) and milnacipran.

• “effectiveness was not shown with sodium oxybate (Xyrem), pregabalin (Lyrica and its generic alternatives) or milnacipran “
• 1) This conflicts greatly with everything I have ever researched and even solicitors I worked for stated that I am extremely good at research
• 2) This also conflicts with the patients accounts of the use of these drugs

• “In 2011, the company which markets Xyrem (UCB Pharma) applied to the Agency to extend the use of the medicine to patients with fibromyalgia. This involved results from two short-term studies involving 1,121 patients with moderate to severe symptoms and one longer term study involving 560 patients; the majority of the patients came from outside the European Union (EU). Results in the subgroup of patients from the EU in these studies did not demonstrate a clear benefit, either short- or long-term and there was a high incidence of side-effects on the brain and nervous system. “
• This is a … frankly bizarre statement … also ... WHAT side-effects?

• 1) Are you stating that thins are not done this way in Europe in which case why would they ever bother approaching Europe over these drugs

• 2) I very much doubt that drug companies would approach the EU, despite my understanding of their underhanded nature and dislike of them, with drugs that do not clearly work or cause such terrible side effects

• 3) All drugs have side effects and do you not think it I down to the patient when it comes to weighing up the risks to the benefits? Anyone can so no or do you not think that patients are capable of rational thought?

• 4) Further to the first point … where are your own trials?

• 5) Your statement of weighing up the benefits and risks contradicts your statement that there was little or no effectiveness

Do you know what I constantly think of several time each week and have done for the last 7 years at least?

What it would be like to actually take sodium oxybate even for just a week to ee what it feels like to be normal once again.

I also ponder that as the Fibromyalgia Syndrome issue is lack of restorative sleep and that symptoms collect over many years that taking sodium oxybate for just one week may reset everything back to the start prior to being affected by my first ever symptom.

In other words having none at all or only one of the 120 odd symptoms I currently experience.

Another conclusion I have come to regarding just the case with Fibromyalgia Syndrome is that the people that make up the committees and organisations that make thee absurd decisions are idiots made up of friends of people in government, central or local, that have not the first clue about just how bad some conditions can be on the human body as well as the mind.

Your answer has had zero effect in changing that view.

Incompetence, corruption and general skulduggery can manifest absolutely anywhere and in my years of endeavours I have generally found it to be everywhere I look 100% of the time.

In which case and in every instance there is a general protocol that exists for making challenges, legally or otherwise, to said organisations.

I would like to ask of you what exist for you?

Can you provide me with a ombudsman for you or governing body or even a watchdog? I imagine any challenge would be quite tricky for any professional body especially when they have other professional bodies that conflict with their reasons that are based on something as flimsy as …

Side effects of drugs.

This made even said drugs are cleared for ailments that re not even in the same league as Fibromyalgia Syndrome.

Now I will mention my blogs once again.

I blog about corruption and I have covered organisations in the dozens. As big as you like. I have never been challenged bot that is because of who I am and how I do things.

No bullshit. I am honest in everything I do, sincere and to the point no matter how sharp this may be. Except that when I do this I am not doing this purely through my blogs on corruption.

You might have noted the letters after my name? BSc Applied Computing.

I do a blog on computer hardware and software with some gadgets thrown in. But this is not my only subject of expertise and I provide blogs on …

• Batrachology
• Herpetology
• Ichthyology
• Astronomy and Astrophysics
• Orchidaceae
• British Wildlife
• others including Kung Fu, Photography, Music, Movies and more

My corruption blogs alone number around 3,000 posts and some read like Tolstoy's War & Peace.

I have a dozen blogs and the amount of writing involved is astronomical and with each and every one what people see is someone level headed, factual, professional and honest. Someone that does not like what he sees, dislikes the lack of professionalism, abuses of positions of power and what the UK has become.

Someone that has not just gone out and done something about it but has spent years secretly recording, collecting and compiling letters that go back 20 years and publishing everything for to help other victims, people suffering physically, mentally or both.

What surprises people most of all is that I have done this alone and there is one very outstanding endeavour that over-shadows everything I have done previously.

Despite many of my endeavours being worthy of front page national tabloid news this one last one is capable of a front page serial all on its own.

If they are surprised at what I have done and achieved so far with my excess of 100GB of data it is nothing compared to what is coming over the next couple of months. Something that will amass so much attention that it will make the 300,000 visitors I have had thus far look like a drop in the ocean.

While I twiddle my thumbs waiting for this to happen I had some requests to my GP go unanswered and I know all the reasons why. As I have proved them in the past over and over again to show my visitors this is not a localised incident, not a one off but that many Doctors and GP's are lying and are doing so under command.

Indeed many of the stories that have arisen on everyone, not just the NHS, have originated as one my stories.

Indeed if I inform you that the late backbench Labour MP, Michael Meacher, approached me via email in January 2013 requesting if he could use my blog data to atack Iain Duncan-Smith in the House of Commons while end others to the news media I am sure you will realise that even two years ago I had a hell of a lot of data?

I have not even published half of what I have!

So getting back on track …

I found myself being fobbed off again, I looked up the link between high blood pressure, which I have and my father died of a burst aneurysm at 56, I am 47 nearly, and read about milnacipran and it being refused along with sodium oxybate. I then decided to look into who make these decisions and mount another challenge against another organisation.

It kind of kills the time while my secret four year long court battle waits to hit the headlines and gives me something to do while peaking my interest.

So that procedure/ombudsman/governing body I asked for?

I look forward to hearing from you with great interest.

Yours sincerely

Martin Haswell BSc

ONE LONG ROAD OF PAIN

Ooh boy! Has today been a bad one and it is only 1.30pm!

First off I am stuck between a rock and a hard place, quite literally and to say it is not stressful ... well I would be lying.

It also turns out that not only have the naysayers now decreed that the positive parts including money is all bullshit, that they have taken it upon themselves to decide that all the previous stuff, much I was present at and recorded dozens of things, is all bullshit too.

Damaged egos, eh?! LMAO!

Added to that is I have a GP appointment where I am going to try once again to be referred to an Osteopath over my back pain.

Oh and the nausea.

Oh and I must remember to mention waking up to discover my left hand is digging into a tender area around the base of my neck, which was already spotted twice and then retracted by the NHS. This may be linked to the nausea, you see?

Which may be linked to the back pain that was also spotted twice and then retracted.

Being wrongly diagnosed, especially when you yourself know what it is, is one thing. But being diagnosed and then having things retracted?

Happened with not only my back, twice, but also my right knee twice and an inguinal hernia on my right side. Recordings of the Doctor in question being caught red-handed by me and admitting falsifying test results and then retracting that too! Lol.

If I ever told them in anger I was recording them I would never  have acquired as much as I have. Let them lie, let them think they are getting away with it. Move onto the next thing, let them build up a great deal of over-confidence in lying ...

...carry on recording. Mount it all up ... post it all on the Internet when you have far more than enough.

Watch as journalists, newspapers and TV idiots act no different to those they expose and steal your stuff, alter it, go after their own but similar story and you get nothing in the way of thanks for it.

Well I did say the whole blog was a trap?! Remember? LOL!

I have now confirmed that high blood pressure is linked to Fibromyalgia and in so doing discovered a new drug, Milnacipran (brand name Savella) that is reported to have better affects with Fibromyalgia sufferers than the totally cheap crap and wrong drugs they fob you off with, like Gabapentin and Amitriptyline.

It seems that this new Milnacipran works on specific neurotransmitters in the brain that are affected by Fibromyalgia Syndrome which itself is partly driven, or mostly, by not having the sleep where your body repairs itself, including the brain itself.

Yeaahh ... imagine that next time your thinking about your friend or family member having something you do not believe or think does no exist, because of idiot medical ... umm experts? I think not.

I know because I went through it for 13 years, though it turned out I had had FMS for closer to 20 years!

I am not going to get into the number of things the NHS destroyed by being both idiots, deaf and liars because I have mostly done that already. Spent 3.5 years almost doing that on this blog ...

... saving money? I think not!

It also mentions the other drug which is the only one that work on the cause of Fibromyalgia, lack of restorative sleep, Sodium oxybate (brand name Xyrem).

Please note that on the page in the link below that Gabapentin is Neurontin, the latter being the brand name which they seem to fail to mention.

Sodium oxybate (Xyrem) is the drug that Dr Kirkham, specialist ion Fibromyalgia at Guy's Hospital, had, to my complete shock, never heard of. I told him it was a shock to hear that as it is the one and only drug that deals with the core problem for people with Fibromyalgia.

In other words it is not only dealing with the pain, not masking it, but deals with he fatigue too. I think this goes double for Chronic Fatigue  Syndrome which I believe is just Fibromyalgia Syndrome in its early stages,

If you have come here about the drugs I mention of Fibromyalgia or Chronic Fatigue, or other subjects for that matter ... you can search the archive! Lol.

So I am thinking about all that ... plus the two other things both concerning large amounts of money, one I do not want to be involved in and one I thought I was and now I am not ... how long for and why not I am in the dark about.

Of course as I stated previously my life has been made a living hell by the naysayers made up with those with damaged egos and those jealous with envy who do not want it to be true.

For the first time in several days I pop in to get something from a friends store and am on in serious back pain. I then decide to head to town for a brief pick up and head home. I bizarrely consider catching an unusual bus route home but miss a bus.

I am then walking down a long straight road I use and I get a third of the distance along it when ... WHAM! No George Michael has not crashed into another Prontoprint, or whatever it was, I get a sudden attack of one of my many other pains straight into my right foot!

I cannot walk! No buses down this road either! I stop for several minutes, lean onto my walking stick and wonder how a human is supposed to deal with this amount of pain, stress and thoughtlessness of others before trying to carry on. Two steps - bang, bang! Darn it this is seeming impossible.

Now here is the bit that no one considers nor asks about ... what do I at times like this? Well I have my walking stick and I stand there and think that there must be a walk that will keep the pain from firing off.

I walk with the heel on the right foot and try not to put the ball of my foot onto the pavement, it does not always work.

I limp and lean hard and my arms get tired and I switch arms and I feel light drops of rain on my face and think "please, no! Not fucking now!! You have made things hard enough at a tough time already, do not fucking rain now, its all you have done for week on end!!"

I look at the pavement stretching off into the distance. It suddenly looks a very long way away.

I have to make three major stops of several minutes, more leaning and questioning, along with a half a dozen stops of a few second here and there.

Despite actually thinking this was going to be the first time I was going to fail to get home., because of my location far from a bus stop, I struggled, bit my lip hard, got down deep and I worked through the pain and limped all the way home.

Oh how I wish that we could get just a week or two of some clear skies and wind free! You have no idea how much I so want some of those so that I can get out on my damned bike!

Because the other things I have to deal with, harder when your avoiding people, is the ever so annoying boredom!

The link to the drug I researched that holds the link to high blood pressure and Fibromyalgia along with the listed drugs above ... yes including the ones I get refused, like Pregabalin (brand name Lyrica) and the mentioned Sodium oxybate (brand name Xyrem), click the link ...

http://www.ukfibromyalgia.com/treatments/medication.html

FIBROMYALGIA & THEM

What a strange day?

I attended a support group meeting for people with my condition. Oddly it was at 9.30pm but my inability to asleep until the early hours, making that time impossible for me previously, is gone.

Probably temporary due to feeling stoned on the afternoons which is down to prescription drugs. Amlodopine being the culprit. The stoned feeling gives way to a strong desire to sleep. Very unusual for me as my late nights continued for years. Maybe having real trouble sleeping with Fibro is a rarity?

It was called, or the logos said... Fobromyalgia & Me. Well you have heard a lot about mine so I titled this one as I did. No names nor details will ever be mentioned ever. Unless of course someone wants to. Even then if I think this is a bad idea for one reason or another I would advise them not to do it.

The group was nice. The people running the show seem to be really nice. I was asked if I was recording... twice and once by email.

There is no desire for me to record and publish patients. So no nothing is going to appear here! Lol.

I have made it clear on here from the get go that I'm not even really interested in the pawns, or front line staff that fob you of with lies and excuses. No, I am after the ones right at the top who did this as well as those that allowed them to do it.

I was recognised by one lady and I explained that I spent a lot of time in a pet shop 100 yards away. She then remembered me from there and O explosives that the pet shop only moved to Baker Street half a mile away. Ten minutes or so into the meeting and a lady walked in I knew. She was the daughter of a lady I know I helped with for a time with her terrapins. We chatted and she was somewhat surprised I was there. I was completely blown away she was there! Lol.

There were about twenty or so people in the group and someone who works with healing stated she was relieved to see two men attend.

Depending on who the author is Fibromyalgia between men and women is 10 to 30 percent for men. Or in other words 1 in 7 or 10.

A healer did a group meditation type thing with some pretty neat background music.

Despite my long horror story, when I was asked to explain to the group my own experiences I kept it brief.

Later they found out a bit more plus I explained about that book that proved to be a godsend for me. Figuring out Fibromyalgia by Ginevra Liptan. When I explained that she had it while studying medicine to become a Doctor but kept it hidden from other medical students. The whole time studying too, everyone was interested in the book. Pens and notebooks appeared at points around the room and I was asked to spell her name by a few.

A lady from Acupuncture clinic in Winchmore Hill also explained what her profession was like and how it helped some patients with our condition.

The session was over three hours and late on in it I was asked what I had thought of the session. Being new and all. I stated it was a real relief to hear so many singular horror stories from others with the condition but that this statement sound wrong. Everyone said that they understood.

I heard some surprising things too and some confusing things. Done drugs were being used that are not only boot on my radar they are drugs I was very familiar with, like Citalopram.

If I was forced to bet it would be that this drug has zero affect on Fibromyalgia.

An interesting situation arose when the word ' damp' was used as something we don't do well with. What was interesting was that everyone takes about the summer and how much better they feel. This time of year I yearn so much for the sunnier and warmer weather. I think this is a misconception.

I myself love the Spring most of all followed by Autumn. Spring because I will feel better and can do things again. I like the Autumn because immediately before it will normally by hot, stuffy and humid. I hate this, I really do.

But as I stated to one woman there if O were to ask each of them about being hot and humid they would say they hate it. Loathe it even. I do.

There was some confusion over caffeine too so when I was asked what I thought O explained about caffeine and what happened with me and the Restless Legs Syndrome and Restless Arms Syndrome. I also explained that Ginevra Liptan was the only author I had come across who mentioned Restless Arms Syndrome and many other symptoms I have along with the Plantar fasciitis symptoms.

One lady asked for the blog address but I did not attend with a set of cards or leaflets with the details. I mentioned this blog but I would rather people become curious in their own time and ask.

One lady asked and I scribbled it onto a page on my Moleskine notebook, tore it out and handed it to her.

The blog and it's various... events will be a lot to take in... once you realise just how many things there are within these pages.

Everything is here to back to what I say and more is coming. No one will find anything fabricated on here. Not even grossly exaggerated! Lol.

I was never going to lay down and be beaten the way I had been. So some years back I decided I had to plan to record every appointment and meeting and mount up the evidence.

Now wanting boy one or two but dozens of things and dealing with the public services this was always going to take a bloody long time... and then some.

The last set of so called support groups I visited were nothing like this. In fact they were not support groups, no one was asked to talk or tell each other what we had wrong with us. Each month several people would tell you a bunch of crap most average people already knew and then the latter half of the meeting they would try to recruit you to work for Chase Farm Hospital for free?!

I attended three of these. I only ever saw one other person again and most never came back. It was a pile of crap in all honesty. They got different volunteers to tell you how cool it was to work for a bunch of overpaid people who have forgotten their oaths for nothing more than a two quid food voucher a day that works barely get you a mouldy cheese sandwich from the MRSA ridden canteen?! Lol. What's worse the cleaners all have Ebola! Lmao!

Anyhoo is once a month, which is kinda cool, and the next major meeting will have a dietician. Now there is something I intended to ask me last GP about before being kicked off and keep forgetting to mention it to my latest one.

Maybe in time I can help some of these people? I mentioned skin trouble to the last sitting next to me and she went to say she used something and as she started with the letter 'T' we both said in unison "Tea Tree Oil!" and she said how weird that was.

People not thinking or believing there was anything wrong with them, strained relationships, the temperature, getting about on buses, moving about and even having to bend over or crouch. All and more I mention here were uttered by individuals within the group.

All were sad and frustrated that our condition is frowned upon and even that some insist does not exist. I told them I very much plan on changing boot only that but a bunch of other stuff too.

People gently nodded as if it sounded good but far fetched. I mean I am just one guy...how could I do anything?

It just so happens that someone in the group has a mother who just might have some insight into that particular answer?

Lol.

This blog has many. They may take you some time finding them all?

Still what took me fifteen years can now take others a few weeks... or a few months?

Trust me on this... no matter what you think... don't let it takes you the same amount of time it did me. It will be...harrowing. And then some!

I visited the pet shop for a bit but then went home and grabbed me bike. I cycled over the grounds of Forty Hall in just a thin top.

The sun being out was too much of a draw and I long to be out all day among the green fields and forests.

A warm Spring sun and the aroma of flowers in the air combined with the leaves just appearing and flushing the trees with various shades of Jade.

Gently rustling leaves on a cool breeze with ChiffChaffs and Chaffinches singing their melodies to anyone that would hear.

Dusty paths and bird hides are among those that last upon my chosen summer haunts and with camera on back I search far and wide for the more unusual things to spot and photograph. Bearded Reedlings are a long wanted sight missed briefly tell years ago but replaced by Water Rail and Reed Buntings.

The pinprick holes that adorn the night sky will be my focus this year. Gazing among the starts at sights dreamed of since a young boy will finally be achieved. But sights alone were not enough to get my starry night blog moving. No pictures and videos were also something to be acquired and posted about.

Thirteen blogs exist I keep. Attempts to maintain have made me weep. Tools missing for many a year. Acquiring now I give great cheer.

Toodles!