MCGILL PAIN & THE FARCICAL

You should be aware of something ..

.. when it comes to the treatment of disabled people and who is .. complicit.

I was told by a Dr Bolat that with my health conditions that there is no GP in the country that would agree to me being removed from it. No GP would rule against me, in other words.

This was prior to my heart palpitations, chest tightness and breathlessness which I only recently discovered is down to the Hypomagnesemia, or low magnesium levels. Which are very dangerous.

Now this danger was never mentioned to me by anyone and whether or not that Dr Bolat of North Middlesex University knew this when he looked at my records and just assumed I had already been informed I do not know.

All I can tell you that I was surprised when he said that and even more surprised when he put his head in his hands and stated “I do not know what is going on in this country any more!”

Now after getting friendly with a woman who was sadly afflicted by a very painful condition I found out two things. Chronic Regional Pain Syndrome was the most painful condition known and I discovered the existence of the McGill Pain Index. In all honesty and in the beginning I thought there was some exaggeration going on. Probably because I have met some people who are very prone to exaggeration and on a big scale too. This was not a time where exaggeration was involved.

When I looked up the McGill Pain Index I then discovered something else .. my condition, or one of them, was also on this scale. It was the ext one down from Chronic Regional Pain Syndrome which itself was marked up at number 40. The scale went up to 50. Nothing exists on any of these scales above 40. There are some comparison examples on there. Giving birth without drugs for instance. Having a finger cut off without drugs and so on and so forth. Still .. nothing appeared about 40!

Fibromyalgia sat at 28.

She did not get PIP either meaning that .. PIP is not awarded for physical pain or mental health pain but instead seems to be awarded based on that the eyes can see. Well .. I say that, that it is down to whether or not they can see that a leg or two is missing or the same with your arms but I am not even sure about this any longer?!

I had long since believed that Chronic Fatigue Syndrome was a mild form of Fibromyalgia Syndrome and I even started to suspect that Chronic Regional Pain Syndrome was a strong form of Fibromyalgia Syndrome. Or that they were all just different levels of the same condition.

Of course I get a Facebook message from my daughter who had been having some infection issues after a biopsy and it just read “Call me. I have been diagnosed with Behcet's Disease” and I just assumed this was something to do with this long lasting infection they screwed up? But … NO!

There was a number of things under Fibromyalgia that I never got explained to me and one in particular, though I did find a link in a book, was never explained. Something that I do not need a damned test to prove. Tooth decay. This was listed for Fibromyalgia but it stated that they did not know why this was. I had never seen anyone online speaking about their own Fibromyalgia ever mention the tooth decay issue. I wondered if it was just me or maybe the Fibromyalgia had to be quite advanced to be affected by this?

So I Googled Behcet's Disease and there on the bloody list is Tooth Decay! It was like being hit in the face with a brick. Then came the others in the list and even some of them I thought I was not nor never had been affected by I later realised that I had. I had just .. forgotten. Well .. some of them.

So .. with this level of pain and with only one of my conditions of Fibromyalgia .. combined with the mental health problems, the high blood pressure (Hypertension Stage 2 and higher), the heart palpitations/tightness/breathlessness, memory loss and self harming combined with phobias and an Accident & Emergency Doctor stating that I should be on disability and a disability solicitor stating that I should be on disability how did this so-called court of law give me ZERO and ZERO?

Unless they are complicit and all those winning their cases are tokenism cases because this Mickey Mouse Court is worried that the wider general public might start asking questions of this so-called court of law?!

My remarks on a number is Facebook pages to do with disabled people and NHS corruption regarding these published cases as no more than tokenism ones seem to get a fair amount of likes.

One has to wonder how long it will be before everything in this country is exposed as .. farcical?!

Various webpages and versions of the McGill Pain Index but bear in mind this is only a … PAIN INDEX and does not take into consideration the things that can kill you. Like my Hypomagnesemia and the link to heart disease, heart attack, sudden death syndrome and the heart palpitations and nor does it consider Behcet's Disease and its symptoms. Nor blood pressure issues ..

https://myjourneywithrsd.com/2016/08/10/the-mcgill-pain-index-scale/

https://www.burningnightscrps.org/sufferers/pain-scale/

https://elleandtheautognome.wordpress.com/2014/02/15/ankylosing-spondylitis-on-the-mcgill-pain-scale/

http://princessinthetower.org/how-to-manage-and-treat-complex-regional-pain-syndrome/

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

THE MAKINGS OF A HARD LIFE

Why do I say the things that I do?

Why is it that I sound cynical about everything?

It is not someone being cynical … it is speaking from experience and I realised that before very long if I approached everything with a cynical attitude I was hardly ever being proved wrong.

That is just how bad things were, are and getting worse.

It is why I voted to get out of Europe.

I ask myself if I made a mistake and will always continue to do so.

It is why I will be paying close attention to what those running the country will do over the next couple of years.

I also imagine it is highly likely I will be sending letters to both Nigel Farage in time and likely to the next Prime Minister, whether this is Boris Johnson or someone else.

AN EXAMPLE OF A HARD LIFE

• Picked on/bullied continuously at school by Jamaicans (never affected me but not good)
• Parents divorced after years of fighting
• Knocked off racing bike by a car about 13 years old (along bonnet, up windscreen onto roof then off the side) which would come back to haunt me later on in life
• Kicked Out 14 (after row between mother and father)
• No Qualifications as a result
• Kicked Out 15 (I never broke laws or had bad habits by the way – by grandmother)
• Left homeless by Local Council (Brighton and forgot about this one)
• Get a great deal of really painful heartburn, diagnosed with Hiatus Hernia
• Left Homeless 24 with a Baby Girl (Homeless five or six times in total)
• Court Case for custody while at College (to get into UNI!)
• Watched Grandmother die in hospital after wrong diagnosis
• Ex girlfriend stole my home and I was left homeless, while at UNI!
• Stabbed in back by Middlesex University over Degree grade (Despite Distinction on Thesis)
• Beaten up repeatedly by ex-girlfriend
• Along with other niggling pains beforehand my feet start to hurt
• Found out person I cared about most was raped, had child
• Dad humiliated on BBC TV for things he did not do (though he did bullshit)
• I get attacked by bailiffs who take one of a kind £4,400 mountain bike that features in What Mountain Bike Magazine plus 4 other things, they lie and tell me they sold it all for £735 (JBW Group) but I know the bike sold for £2,800 (parking ticket £550)
• Despite trying hard and using forums I do not get Police interested in bailiif fraud
• On a forum I get intercepted by a woman claiming my case against bailiffs worth millions
• After getting details of witnesses and all my paperwork woman who contacted me via Community Action Group vanishes along with my witness (who saw bike sell for £2,800)
• Person closest to me was abused and held against her will be radical Muslims
• Found out radical Muslims were asking about Stratford, prior to London Olympics (they was in Liverpool)
• Eventually get my hands on the Home Office file on one of the radicals I still have today, published on blog long ago
• Start recording background conversations and sending the DVDs to MI5
• He was left homeless by a Local Council
• My father died prematurely at 56 (all 500 people at funeral blames the BBC)
• DWP Kick me off disability
• Get involved with someone to start a business but he turns out to have .. problems and a bit child like and a bit of a bully
• I get stalked and get hate mail and photos over a period of about 6 months to a year
• Grandchildren stolen by evil ex
• Uncle dies at 58 leaving me feeling guilty to this day I did not see more of him
• I decide to start BLOGS
• Court case gets started up over my grandchildren and failures of the local council
• After asking for 13 years about my feet I find out most of my 100 plus symptoms are due to Fibromyalgia
• Court case leaps across five courts (Magistrates, Criminal, Family, Crown, Hig and Supreme Court)
• I quickly realise upon research that the NHS already knew about Fibromyalgia and repeatedly lied to me through maybe a dozen General Practitioners (diagnosis I made confirmed at Guy's Hospital but they tried hard not to refer me)
• I manage to get back on Disability after proving that the DWP are corrupt and when you ask for the medical evidence they burn them (meaning Doctors all lied on letters too)
• Court case of person close to me is won by person close to me and large damages awarded (or so I am told), they then disappear and still awaiting contact
• DWP go after my Incapacity Benefit instead of my PIP benefits with via lying along with the lamest of excuses proving they have no medical knowledge whatsoever and no medical professionals ... AGAIN! (post later in week)

• Capital Punishment is more humane
• Driven by the thought that these things can still keep happening to the person that is closest to me, others and my grandchildren
• During all this I get 120 symptoms that prove to be Fibromyalgia
• Right knee physically damaged, just before father died, with a pop
• Hiatus Hernia and Oesophagitis
• Extremely High Blood Pressure
• Postural Hypotension
• Falling unconscious and seizures
• Collapsing discs in my back
• Anxiety and Panic Attacks
• Full on breakdowns
• Suicidal Periods

• Paperwork and documents going back 20 years plus
• Recordings cover several Local Councils, NHS, two Police Forces & others (much on here)
• Also several retail chains selling refurbished goods as new to me (Littlewoods, Argos & PC World) – missing from that list
• Did not list all disasters, thought it would be too long, and …
• Should be mostly in chronological order
• Ailments: Fibromyalgia (120 odd symptoms), Inguinal hernia Repair Pain, Inguinal Hernia, Hiatus Hernia, Physical problem right knee, High Blood Pressure, Postural Hypotension, High Cholesterol
• Now having seizures too, falling unconscious

POSITIVE THINGS

• Passed driving test
• Had a daughter (later to turn bad of course)
• Learnt Wing Chun basics
• Attended University
• Got a BSc Degree in Applied Computing
• Owned three Alfa Romeos, two cloverleafs and a GTV 3.0 V6
• Owened an Audi A6 Quattro
• Owned a dream one of a kind mountain bike, albeit briefly, that appears in What Mountain Bike Magazine along with my name
• Learnt advance Wing Chun

I have constantly asked myself if there are many others that have had lives like this and could there be those that actually had it worse than this?

They would have to have survived it all of course!

DRUG FUELED STATES OF BLISS

So then some medical people finally come out and state that taking drugs should be decriminalised?

Sensible. Not sure that's going to be across the board, it even sensible series the board?

For the most part it is.

However making this possible is going to create one hell of a logistical problem, or more precisely remove logistics altogether in a certain organisation. I will get to that shortly.

As far I'm concerned this could me a God send?! You see I'm not allowed several drugs that are for my condition and this includes around 120 symptoms. Yup you read that correctly, one hundred and twenty symptoms. Sound incredible? Well if I was one of the very unlucky ones it could be add many as around 200.

Whenever I mention the amount I always get this idea where naïve people and those a little slower than most ask themselves "How can anyone have that many areas in pain? It's impossible?!"

Well if you do I will first ask; oh your a Doctor or specialist are you? Then maybe I should have a direct line to you?

Then I would follow up with; Umm the word 'symptom' means exactly that and not pain!

If your that interested then I'd say the pains are over a dozen ... maybe two dozen? I don't necessarily keep track, some are permanent, done semi-regular and others only occur note and then. I get night cramps in my calves and although this is mostly an odd feeling like I'm going to get pain but don't, the bad pain only occurs once or twice each year. Thank God as several times a year and I'd take my own life if this was the case!

But I've been taking both Quinine Sulphate and magnesium sulphate to prevent it occurring. When it does the pain is so intense that you cannot actually utter a simple word. It's very weird or would be if not so bloody painful.

Sodium oxybate is the only drug to deal with the actually source of the problem with Fibromyalgia Syndrome. But you can only get it if you suffer with narcolepsy. Though it's not nice the comparison with Fibromyalgia is quite startling and I get narcolepsy like symptoms along with everything else. I did this afternoon.

I was on my computer in the afternoon and the next thing I knew I was waking up and it was after 9pm and late enough to be dark on the 17th June.

If you get any paraphernalia on Fibromyalgia it can actually mention that a certain drug helps a great deal with the condition. It does not name it but it's clear they are speaking about Cannabis.

I went through periods where I smoked it socially and got into smoking it privately and it does have a far better effect than all I've been prescribed combined!

But then that's probably because asking with sodium oxybate you are also not allowed to have milnacipran too!

It gets better as there is another drug called Pregabalin and they won't give me that either because of the cost!

So ... the best three drugs for FMS are not allowed and the other refused over expense! So I get the crappy and cheap crap fourth end fifth drugs in the list of effectiveness for FMS.

They wonder why the NHS and the country is in a mess?!

Narrow minded, selfish, amoral and inconsiderate arseholes without a shred of compassion while worrying about their salaries while pushing pens.

Hmm? Well I think that just about covers them all? All public services, local and central government?

Oh yeah that logistical problem?

Well what the fuck will the Police have to do add they don't do fucking anything else, rich and celebrities aloud to get away with murder, well pretty much almost, and laws are completely ignored fifty percent if the time.

At least the keep Krispy Kreams going strong in the financial crisis?!

Health bodies call for drugs to be decriminalised - http://www.bbc.co.uk/news/uk-36544380

THAT CHRONIC PAIN HOSPITAL

I was stirred out of a lifeless slumber by a knock at the door and it was Eon, to read my electric meter.

Well I was provided the link to the hospital I referred to and it is a chronic pain hospital which deals with everyone that has to deal with pain on a daily basis.

Funny as it seems medicine and drugs are failing or at best falling behind? According to the report 18,000 people in Scotland alone are dealing with pain on a daily basis and I find this strange and think ther must be a link between this and our modern lives? There must be something we are doing that out biological make up is not used to doing to cause this many people to have issues?!

Oh and will you look at that? It seems there is another one in Bath?! A damn site closer to me that Scotland!

Hmm just like my Fibromyalgia, and before diagnosis all the pain I told them I have not one person mentioned the fact there was a hospital for chronic pain?!

The people that run the NHS are such nice, helpful and sympathetic people?! NOT!

LINK ...

http://www.bbc.co.uk/news/uk-scotland-glasgow-west-27963138

NO MAGIC WANDS

Reading about Fibromyalgia sure is interesting. For anyone who has had similar symptoms to me but no answers maybe this will help.

Now I would not want to wish my condition on anyone however I would be most interested to get in contact with anyone who is unfortunately having similar difficulties.

http://chronicfatigue.about.com/od/symptoms/a/brainfog.htm

From the above link...

"In FMS, brain fog generally is worse when pain is worse. In both FMS and ME/CFS, it can be exacerbated when you're anxious, rushed, or dealing with sensory overload.

Symptoms of brain fog can range from mild to severe. They frequently vary from day to day, and not everyone has all of them. Symptoms include:

Word use & recall: Difficulty recalling known words, use of incorrect words, slow recall of names.

Short-term memory problems: Forgetfulness, inability to remember what's read or heard.

Directional disorientation: Not recognizing familiar surroundings, easily becoming lost, having trouble recalling where things are.

Multitasking difficulties: Inability to pay attention to more than one thing, forgetfulness of original task when distracted.

Confusion & trouble concentrating Trouble processing information, easily distracted.

Math/number difficulties: Difficulty performing simple math, remembering sequences, transposing numbers, trouble remembering numbers.

So far, we don't have evidence that our brain fog comes from known learning disorders. However, our problems are similar to those associated with disorders such as dyslexia (reading problems), dysphasia (speaking problems) and dyscalculia (math/time/spatial problems).

5-HTP

B vitamins

Carnitine

Choline

Omega-3 (Fish Oil)

Rhodiola

St. John's Wort

SAM-e

Theanine

Some doctors recommend dietary changes to include "brain friendly" foods, some of which are natural sources of the supplements listed above. Some of these foods are:

Fish (Omega-3)

Canola or walnut oil (Omega-3)

Eggs (Choline)

Fruits & vegetables

Carbohydrates

Some FMS research shows that moderate exercise can help improve cognitive function as well. Exercise is difficult for us, so be sure to read Getting Started With Exercise."

Now keep in mind that many things I went through and forced through I did while unknowingly being affected by the above and previously posted symptoms, including acquiring my Single Honours Degree!! Lol.

Odd things is I did seem to feel somewhat better with exercising and those suggested. Not so easy to focus, remember, find the time and afford right at this present moment! Indeed not for FIVE YEARS to be precise. My DLA enabled me to do various things along with having a lot less stress and no Wolves at the door. Currently impossible and their are...

NO MAGIC WANDS...

..that will make all these things right again. Especially during this financial crisis and the British Government and members of the Cabinet among others showing their true colours!

Nothing in the way of empathy of any kind and no regret. Which is why I become infuriated when they develop morals over the down-trodden citizens of other nations. They might as well say "LOOK AT THEM!! THEY ARE WORSE THAN US!"

Personally I would like to go back to the start and take voluntary uthenasia than you very much. 

You can only feel cruelty and torture if you are alive. It is this that many twats just do not get! So people die slowly just so they can not be seen for the really evil twats that they are. Or point at another group of twats and shout "it's their fault!".

Hehe.

PAIN, PAIN GO AWAY COME AGAIN ANOTHER DAY

Well what do you know?

I found this web page regarding Amitriptyline and pain which is the first time I have made a connection between these two.

Shockingly it actually refers to neuropathic pain too?! Why it has taken me this long to find out the details is beyond me.

What caused me to look is that one area of pain has been a little easier the last couple of days. But I do not know if I am just having a few good days or whether it IS the Amitriptyline. I have also not been out very much for three days, which is very, VERY rare for me.

So it will take a little while longer to ascertain if these pills are actually helping my pains. If so it will be only the second drug, bizarrely directly after the last, which has had any effect on this area. I still feel that the Pregabalin was the more sensible choice as this could have also replaced my Sertraline too to deal with my Anxiety Disorder, which I very much doubt the Sertraline has any affect on.

The Amitriptyline is also NOT making me ill either so that is a big bonus. It just remains to be seen that the current lower pain levels remain that way?! I have had less pain in my feet which includes the Plantar fasciitis pain along with the heel pain, bolts of electricity type pain along my feet.

Unfortunately it has no effect on the Metatarsalgia, knees, hip, groin, hip or back pains. But I take 100 to 200mg of Tramadol too which may or may not be effective. Not, at times that is for sure.

Of course I do not know how many pains  Pregabalin would have been effective towards? Also Gabapentin certainly did not help my back or shoulder pains, but was told this beforehand, or my groin or hip pains either.

Still relieving some pain to a more tolerable level I will be extremely thankful for. But falsely accusing me I will not be forgiving about, lol.

I found this page as the curiosity got the better of me, funny it is a UK web page, lol. Wonder what I might find if I search for the best painkillers?!

http://painconcern.org.uk/amitriptyline/

SLEEPLESS WITH THOUSANDS OF ELECTRIC SHEEP

Well wandered about in a daze today and did not do ANY of the things I set out to do.

I seem to have had two consecutive nights where I have had serious trouble getting to sleep and then as a direct result waking up late.

I really, really hate that but at least now it is summer time, or at least I think it is, or its not getting dark just a few hours after I wake up and get out of bed!

I am hoping that it is not down to the new drug they have given me or that if it is that it settles down very soon as I will have to start taking TWO a day this coming Friday! The following Friday I am to take three a day.

To make matters worse I am damn sure that the pain guy stated that he would start me on 300mg and raise this up to 900mg but I could be remembering that wrong. If not and this drug is causing the sleepless nights and it fails to settle in then sleep may well be something that I just go without constantly before very long.

Meaning i will then have to be weaned of this drug and then weaned onto the next one and I do now know of course that there are other drugs that do the same thing. I will probably go and find later that this drug is laced with caffeine as that is normally the only thing that causes the sleeplessness.

Hmm in fact I am going to reduce my caffeine intake again and perhaps maybe reduce it to zero for a couple of days see if that makes a difference?!

Thinking about the letters I have had while I was out, thinking about where I go from here. I had planned to get some washing liquid for laundry as well as visit PC World as well as the Doctor's Surgery to make another appointment and find out who Dr ER Yeo is?! It was on that letter from Dominick Mort which actually was not from Dominick Mort and another Doctor instead.

I want to ask about specifics to do with Peripheral Neuropathy, Large and Small Fibre Neuropathy and that these do sound like what I have now and also WHY I did not remain under Dominick Mort to have tests to confirm this?

I shall also go further into why they cannot perform medicine in this manner, dismissive and reluctant, and why this cannot be so.

I will also inform him about this blog too, finally though I do suspect he already knows.

Oh yes and of course I WILL ASK why my medical records have been altered?!