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!

SUMMING UP NHS GP'S

Darn it!!

This fecking app has done it again and I have just lost several pages of text!!

I told them in the feedback to not bother putting their crap products forward to business users otherwise they will have a permanent weekly booking in the courts before very long!

Yes the link I give is from Fibromyalgia Association UK who curiously seem to request donations off me which is a bit odd! Charities are supposed to help those who are afflicted not expect cash of them?! But maybe I misunderstood. I do not hide the fact that I do not like charities and that there are myriads of them but I see very few actually do any good.

On the page the link is on they talk about the drugs for Fibromyalgia but there is no mention of Sodium oxybate, unless mentioned in brand name only and I have forgotten it?!

From my own research this is the only drug that desks with the heart of the problem. The others are merely mostly hit and miss affairs and even then only Gabapentin, Pregabalin and Amitriptyline have any effect. I have had the first and the last of the three and they most certainly did for me! Out of well over a decade they were the only ones to have an effect too. Unfortunately not completely.

This brings me onto being prescribed them and as I stated in a comment on that link I was prescribed Gabapentin and was told something odd. I have only alluded to this previously but this is very key and a good time to go over it once more in detail.

Of the many things I have the three main were feet back and knees. My feet had been diagnosed with several things all of which were wrong at the time I was prescribed Gabapentin. Remember this as I then state that I was first told by a chiropractor that I had two issues with my back in the places I stated. This was then mirrored by a back specialist who stated that it matched up with what was felt with her hands. But later an MRI refreshed there was nothing wrong. Contradicting herself, her hands, the x-ray and the chiropractor.

So someone explain that without a single solitary correct diagnosis how the Pain Consultant informed me that Gabapentin would work on my feet but not on my back?!

Ergo how could he possibly predict this without a single diagnosis?! Put simply you cannot! Except he was absolutely spot on!

As for this organisation they do come across as very American and I wonder now if charities to do with health conditions actually survive by receiving donations from those afflicted with the illnesses the associated charity covers?

But on the site the link is... err linked to, lol, there is a great quote that mirrors exactly what I have started on here from day one. I have also told people I know offline too and even to the doubting family members!

In fact in future I will refer anyone who is doubtful to this very bog and this very post!

Now many people give GP's far too much credit and seen to think they are all knowing and that if they do not know then it does not exist. It has also been laid out on here that I have disagreed and now even argued with a great many Doctors and GPs.

In fact I believe that I was kicked off my last GP Surgery because they knew that I would figure out that I was being deliberately kept in the dark over my diagnosis and that Is one step away from figuring it out. They knew that once figured out then everything rise would fall into place. Ergo he did not want a broken jaw because he was just following orders?!

I also stated over and over again that the 'G' in 'GP' stood for GENERAL!

Now imagine the smile that ran across my face when I spotted the following quote on the page I have provided the link too?!

Lol...

“Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing.”

"These oft-quoted words by the French philosopher Voltaire [1694-1778]"

Now need I say anymore on this subject?!

Now consider that only one third or less of those Atos staff who do assessments are actually GPs?!

Now just how ridiculous do the DWP, GOVERNMENT (including the last government also body liars and inhuman) and Atoms all now look?!

My God people?! I have yet to publish the last part of The Architects Series whose title and reveals completely and utterly shows them all up for the self obsessed, money (taxes) grabbing fraudsters they are!!

http://americannewsreport.com/nationalpainreport/drugs-fibromyalgia-good-8823155.html#comment-17090

THE FIBROMYALGIA SHORT VERSION

EDIT: I just noticed that yet again a number of posts have not bloody POSTED and added to this my keywords have all gone missing too!! Google at its most incompetent best or a didgy tablet PC?!

FIBROMYALGIA ASSOCIATION UK BOOKLET (15 Pages)

Despite being a UK booklet and association it is written by an American Doctor!

PAGE 2

Fibromyalgia is a common illness. In fact it is more common than rheumatoid arthritis and can be more painful.

Condition cannot be identified using standard laboratory tests, or x-rays. (But I believe the cause could be identified in x-rays.)

PAGE 3

Causes can be car accident (had two) and viral infection (had one of these years ago too which left me with problems with ears and throat)

Pharmacological  management of Fibromyalgia in the UK often involves 'off-label' medications focused on the relief of symptoms rather than a treatment of the condition.

Many people find available medications either insufficient, or difficult to tolerate due to high incidence of adverse effects.

PAGE 3

Start of section on exercise.

PAGE 4

Starts section on Welfare Benefits and covers DLA and PIP. Obviously written by English people.

PAGE 5

Still under welfare benefits mentions states that you should refuse to do things that cause pain and this includes turning up for the assessment.

PAGE 6

One of the most frequent comments we hear from people with Fibromyalgia is, "The government does not recognise Fibromyalgia."

This is not true both the DWP and the Health Department have starred that they recognise it. (Umm no I do not think so! They inhabit did not really think that statement through did they now? Sounds like something the DWP or NHS would say when someone like me accuses then of what they have done and his the condition from me out refuse to diagnose it?!)

FOR THOSE WHO CARE

It can be difficult to live with and care for a person living with a chronic condition like Fibromyalgia but you need not core alone. Fibromyalgia Association UK not only cares about those diagnosed with Fibromyalgia, but also cares about you, the people who live with and look after us.

Section called 'We Look So Well' (yup applies to a number of idiots)

In view of the constantly changing levels and sites of pain you may have thought that the person troubled with Fibromyalgia was going mad or just being idle.

Don't feel guilty if you have because we have wondered the same things about ourselves. How can we LOOK so well and fell so bad?

It is often referred to add the invisible condition or the irritable everything because there are no visible signs, but inside we are hurting and our self esteem may be very low. We may Ferrell we are letting everyone down.

Try to talk about these conditions (are you having a laugh?) and learn to recognise mood swings.

PAGE 10

Two sections on 'We Have Our Bad Days' and 'Making The Most Of A Good Day'

You may have noticed that a person with Fibromyalgia become easily confused and has shirt term memory blanks, perhaps forgetting a birthday or anniversary, getting words mixed up our missing them out altogether sometimes stopping in the middle of a sentence completely forgetting what was being said. These symptoms are often more distressing than the pain or the fatigue.

1. Writing can sometimes be difficult the use of a computer can assist

2. Art and Crafts can ease tension

3. Keep a good SUPPLY OF BOOKS AND ANYTHING ELSE THAT WILL ENTERTAIN!!

4. Encourage the learning of new skills. Change can be very rewarding.

What are the tasks sufferers find most difficult?

1. Carrying a shopping bag

2. Inaccessible items (impossible in my house but I started my house was WRONG)

3. Avoid excessive reaching

4. Keep floor area clear to prevent tripping

Family and friends can help a great deal in the  management of Fibromyalgia (LMAO) by learning as much as possible about the condition?! (I had one on the phone recently that STILL QUESTIONED that I had it and obviously has not read a damn thing about it in FOUR MONTHS!! But still thinks they can say what they like and advise because having a job blesses you with wisdom and intelligence no doubt?)

Section titled 'It's Good To Talk' 

(..and have quite obviously NEVER meet a family like mine!! In fact one of the reasons I am typing this out is despite the good books being 60 pages long and this booklet being 15 pages long and this blog being here 18 months I have put this here to use the keyword ' Fibromyalgia Twitter Version' to tell anyone I need to to search for that term on my blog and they will find this version!! Just over TWO PAGES LONGl!)

Bearing in mind I diagnosed my condition somewhere between my last GP  appointment with was June or July 2013 and owned several books on Fibromyalgia by my first appointment with my current Doctor, 4th December 2013, so diagnosed it at least for months ago but likely 5 months ago I can point then to this page when I get the 'attitude' in future from any of them?!

The funny thing is that I NEVER go to them, I have been nagged and moaned at about that since time in memorial, and they extremely stately come to me. So I see most of them once a year possibly, maybe twice with some that does not involve a family function. The only one I do see more often had spent the last dozen years telling me about all their different things and local people duck for cover when they are seen coming up the road. One woman turned to another and said 'quick let's go, if we get caught here we won't get away and we will have to endure a life history'

It is sad, but true. Everything has to be worse with them. I have been checking the latest thing I have been told about but it does not sound all that terrible and many times no symptoms. But if I copied and pasted the text message on here you would be forgiven for thinking that terminal cancer was suspected, let alone diagnosed! So really I prefer to stay on my own and deal with out myself as the only one that visits me probably does so because of guilt that I have never had attention not hero while they have had people bend over backwards repeatedly for them!

In fact if there was ever w family argument about support I would simply ask those involved to just the things that the two of us have had done for each of us.

Theirs would have dozens of things in the last 7 years.

Mine would have one! That was from about teen years ago. There could be things on the list but they were never things I needed not asked for. In fact the only one that is on my mind I specifically text them immediately stating I did not want it and did my Orchids alloy of damage!

But your not supposed to concern yourself with and of that, they did something for you and therefore you should be on your knees for the rest of your miserable life because they ate the only ones that do it!!

What I can never figure out is why they do the things for you that they think you should do or think you should have?! They never listen to what you actually say you want our you need! EVER!

Yet they have fallen out with so many people close to them it is unbelievable to imagine how they cannot see the reason?! One even emigrating to Australia after falling out the last time and no contact has been heard from since! In fact they stated to me the same thing that not only did many of us know but that which the person guilty of doing complains that no one else does!

Listening! But they are actually the worst individual in the world for listening to anyone else and if you mention it all you get are excuses that do not wash. Yet I have medical excuses and they are merely batted to one side as insignificant.

I would rather throw myself of Tower Bridge in London than be like that?! I have had my condition to the point of affecting my life for thirteen years and have had many symptoms a lot longer.

Yet I have NEVER gone after sympathy and only twice ever asked for help, which I failed to get each time. In fact I have one mate who likes to have a home because he knows how self centred one family member is and I always take a few seconds to pick up on what he is jibing at. He says 'Have you got your shoes yet?' Which has been a joke now for a year.

Hmm ... maybe ... even ... longer?!

THE PERFECT TIMINGS OF THE FMA UK

Well after those emails and phonecalls while I was out I got home and there was a chunky envelope on my door mat?! I immediately though 'Oh this will be from Sheilas solicitor as she said she contacted them weeks ago!'?

But almost as if by DESIGN it was a pack from Fibromyalgia UK who have read my emails, checked out my BLOG and contacted me stating they were very sorry to hear what I had been put through?!?!

Now this is why I get aggravated by so called professionals who are in effect so self absorbed they do not want to lift a finger and then get other people to do for them who do not check th3eir facts nor are made sure by those they work for that they have them!

I have Fibromyalgia and therefore I have Fibrofog!!!

I give as much detail as I can and I hand over the blog which has all necassary data and evidence. That was partly why the blog bloody started in the first bloody place. But when people are phoning me up without even making sure their own facts are spot on or quoting stupid laws instead of thinking of another way to prove it and expect me to remember everything and yet again do their work for them it drives me up the wall!

Maybe I should just take out a loan, pay them the deposit and then when they bioll me at the end bill them for doing the same work they do and deucting by the same amount they charge?!

What would happen is that in each case they would end up owing ME money?!?! LMAO!

Amyway here are a couple of scans I did of the Fibromyalgia Association UK pack they sent me I was not expecting. Yup that is the best bit....I WAS NOT EXPECTING IT!! LMAO!!

The pack looks good and informative but it does seem to be trying to sell me goods and getting me to donate?! Wait a minute I am the one with the Fibromyalgia I was womdering if you can aid me, not the other way around?!

LOL! Still someone might get in contact with me as they did forward my email on to FMA UK. I never thought of bringing up the fact that I contacted a couple of Associations for Fibromyalgia on speaking with these legal beagle go betweenies?! I am a numb-nuts with my fog and...STUFF! Lol!

FIBROMYALGIA SOLICITOR BRIAN BARR

I was looking for Fibromyalgia associations and groups to ask about advice and regarding Sodium oxybate.

While searching I got a little bit of a shock?!?!

First I found a charity?!

I find a link that, probably on the Fibromyalgia Association UK page, that says they can send an information pack to your GP?! Than God I now have a curious GP and not an in denial GP of their own abilities and intelligence!! Lol!

Then I found a link to a solicitors practise called Brian Barr that not only specialises in Fibromyalgia actually dedicate the condition it's own page?!

I have emailed them. I have explained the situation briefly, explained Irwin Mitchell briefly and have them the address of this blog!

Every digit is currently crossed!!

Lmao!

http://www.brianbarr.co.uk/thank-you/#wpcf7-f102-t1-o1