FIBRO FOG LEADS ME TO RLS

Well what do you know?!

After reading the long list of symptoms for Fibromyalgia and discovering the associated memory problems with Fibro Fog I decided to look it up. The latter not the former.

http://www.webmd.com/fibromyalgia/guide/fibromyalgia-and-fatigue

I found this page and in the list of symptoms is another one of my complaints I have also had a LONG TIME!

Restless Legs Syndrome! Oddly now that I typed it my usually bad memory is telling me that I have linked this RLS up previously with a different condition. This is awfully funny, good job I can see the funny side of things, as I was told by GP after GP that no one knew anything about it or what causes it and I myself discovered what irritates mine and that is CAFFEINE! I can still get mild RLS but if I drink too much caffeine late in the day my night time would be far more miserable than it normally is, well some of the time it is.

Ahh now I remember it was linked to Charcot Marie Tooth Disease and for me it was the cherry on the Bakewell Tart and why I was so convinced I had found the condition I was afflicted with.

You see each time I made a mistake it was based on everything I had ever been told by so called health professionals within the NHS!

Because no one could figure it out it seems highly probable that it was something unusual and rare.

Because little is known about...hmm... RLS and CMT was a rare condition I had thought that must be it. The 'hmm' was to remind me to type this sentence as another thing that has been driving me crazy is that my typing has been very progressively been getting worse and it has driven me mad because I try doing things at the speeds I always have. But every now and then I make a series if mistakes and almost seems as if I have forgotten where the KEYS are for certain letters on my keyboard every now and then?!

But I have been around computers since my first Commodore VIC-20 which must be over 30 years ago now?

It should also be noted, for anyone that reads this who has not picked up on it, is that I have been given a totally different drug to that I had, or that I wanted. It just so happens that they hit on one of the only two drugs that WORK with Fibromyalgia?! It also transpires that this was done at a time a couple of months AFTER I had revealed I had been recording hospital visits?!

Now maybe it is just me but Fibromyalgia is NOT a rare condition and even I was familiar with the term and I even told my brother's first neighbour I was familiar with the name Fibromyalgia when she explained she suffered from it. Now had it turned out that I suffered with Charcot Marie Tooth then it would have explained away some of the NHS mistakes with just being naive but there still would have been the lies among all that.

But now and after 13 years I have let the cat out of the bag so to speak and the VERY FIRST appointment I have AFTER this I just so happen to have been given one of the two drugs that work on my conditions. Only the affects seem to come and go unfortunately but I cannot ignore those few times when my felt had never felt more normal than they had for over ten years!

LAYING OF TRAPS & GROUND RULES

Right then! After finding out that Fibromyalgia could also explain other problems I have, like my forgetfulness with FIBROFOG, I decided the best thing to do is create a DIAGRAM and a LIST!

Especially as just today and along with a County Court Form to Northampton over a faulty phone I also sent in the reply and request to help of NHS England! So I might just be in the thick of it very soon?!

Now first up is a diagram that consists of all the areas of my body I have had problems, most of which I have never been given an explanation to and many also lied about.

After the diagram is list from 1 to 22, had no idea it was that many but knew it was over 10, of the problem areas. One of these only occurred once and some do not cause much pain if any at all. I listed them all just in case there are those with a madical background that may spot what a great many Doctors have not.

Current thinking is Fibromyalgia until either I or a Doctor rules it out with good reason.

NOW ONE AT A TIME PLEASE AND SINGLE FILE...

Pain Area Descriptions...

1 – Forgetful, Headache, Anxiety, Depression, Seizures

2 – Blocked Nasal Pasages most nights lying in bed

3 – Sudden Vomiting (OESOPHAGITIS)

4 – Crunching Painful base of neck and frozen shoulder (HAVE PRIVATE X-RAYS)

5 – Severe Heartburn from (HIATUS HERNIA)

6 – Pain in mid section of back (HAVE PRIVATE X-RAYS)

7 – Pain ONCE from not being able to breather in more than 30%

8 – Black area on ULTRASOUND that causes me pain

9 – Hernia DISCOVERED on above Ultrasound but no pain or popping feelings

10- Hip pains that can be severe in certain positions or just aching, - PRE-HEEL PAIN

11- Thighs can be fairly painful some days with a strong aching

12- Outside of right hand can ache, pucking up saucepans painful

13- Aching at the backs of my knees, Hamstrings??

14 – Varying degrees of pain in knees arund outside of patella

15- Restless Leg Syndrome (NEUROLOGICAL DISORDER) – PRE-HEEL PAIN

16- Rare but EXTREMELY PAINFUL spasms that only occur while asleep but wake up screaming.

17 – Clicking pain, Achilles Tendinitis?? - PRE-HEEL PAIN

18- Pain in the ball of my LEFT foot only, Metatarsalgia

19- Flashing lightning like pain or sometimes aching on the dorsal area of arches

20- Flat of Heel Pain which gets PROGRESSIVELY WORSE the more I walk or stand and NOT EASIER as in Plantar fascdiitis.

21- Problem with right ear, pops a lot in cold and damp weather, hearing less than the other side and putting in SILICON in-ear buds when using headphones I lose the hearing totally!

I had self diagnosed... because it become apparent that many Gemeral Practitioners and even Specialists ranged from not very good to bloody incompetent....

Morton's Neuroma but ruled out.

Dupuytren's Contracture but I quickly then ruled that out

Charcot Marie Tooth Disease but ruled out via NCS and Electromyography

Current thinking now is Fibromyalgia due to this affecting memory (called Fibrofog), causing fatigue, lots areas of pain and other things all of which I experience. ROYAL FREE HOSPITAL and CHASE FARM HOSPITAL.

NHS Diagnosed...

Tenosynovitis (Wild guess at Whipps Cross Hospital)

Plantar fasciitis (String of GPs insisted despite my disagreeing) eventually dismissed

Pes Cavus then dismissed by next specialist St Michaels Hospital

Neurological Disorder which was later dismissed by next specialist by lying. St Michaels Hospital

BACK PROBLEMS in 2 areas, later changed their minds (HAVE CHIROPRACTOR X-RAYS)

Inguinal Hernia immediately repaired, told I would get one other side

Inguinal Hernia: then denied. Not admitting there was a black patch in pain area

Organic Anxiety Disorder

Depression

Oesophagitis Grade C (Endoscopy)

Hiatus Hernia (Endoscopy & Barium Meal)

SPECIALISTS...

3 Rheumatologists

4 Orthopaedics

3 Podiatrists

1 Back Specialist Physiotherpist

5 Physiotherapists

1 Neurologist (Discharged before testing for all neurological disorders?!)

Tests and other procedures...

Tarpal and Carpal Tunnel Syndrome (do not know names of tests)

Electromyography

Nerve Conduction Studies

Orthopaedic Insoles – TWO DIFFRENT OCCASIONS

Corticosteroid Injections (VERY PAINFUL)

Ultrasound Treatment

Night Splint

X-RAYS, X-RAYS, X-RAYS and I now glow inm the dark!! LMAO!

MRI Lumber

MRI Mid Upper Back while lying flat the results contradicted Back Specialist, Chriopractor as well as PREVIOUS X-RAYS?! Lmao!

NOTES: Numbers 10, 15 and 17 all appeared PRIOR to my PLANTAR FASCIITIS which includes both my heel and arch pains. Also thse get WORSE the more my feet are used whereby everyone tells you, and all books state clearly too, that the pain gets EASIER the more you use them. SO either all that state this are complete morons or it is either NOT Plantar fasciitis or being brought about from something else.

DRUGS...

Oh please no!! It has been thrteen years minimum lol I could not possibly recall all of them!

A KING SIZE HEADACHE

Well Timmy must be about because someone is hitting my head with a Mallet or at least that is what it damn well feels like!

I seem to have traded the other illnesses and pain, or at least much reduced versions, for one hell of a headache this morning.

So I am making a cup of tea and taking even MORE PILLS, lol.

Taken 50mg Tramadol already an hour ago...

Taken Metronidazole

Taken the Prochlorepzine which according to my GP does NOT exist.

Now I will take another 50mg Tramadol and 500mg Paracetemol for this headache which I have to move very slowly and gingerly as to not aggravate it!

Of course I do often get headaches in the morning but not like this and of course for those that paid attention the CMT is a cause of that as you do not breathe properly at night and YES there ARE pills for that!

Now Metronidazole are the only drug on the complications list with CMT in my book that I am familiar with. Quite how it complicates things I do not know for sure.

Now what I do know is that muscle relaxants are a bit iffy because, and obvious hen you think about it, this relaxes your muscles and with CMT you have messages from your nerves not getting to your brain and vice-versa so that diazepam could have a far greater effect than it otherwise normally would.

So if you take at night and your diaphragm does not operate as it should then your not breathing as you should and CO2 gets re-absorbed into your body and you will wake with a headache!

I still have not studied the entire book so am not aware of other complications right now. Of course there IS the possibility that I do not have it...

...but it IS my body, MY symptoms and I have the whole bloody lot of the lengthy list that goes with CMT going back not just the 12 years with my feet but going back over 20 years.

In other words if a PROPER test was done and it came back NEGATIVE I would bloody well eat my hat!!!

How I spent over twenty years gradually acquiring the dozen or more symptoms of a rare disease like Charcot Marie Tooth Disease of which I only became aware of a couple of months ago is.... well lets be straight down the line here its just not possible is it?

I mean consider the list of symptoms...

Feet Problems
Lower Leg Problems
Knee Problems
Back Problems
Arm Problems
Hand Problems
Morning Headaches
Reactions to General Anaesthetic (combined anaesthetics FOUR TIMES I know of)
Reactions to Local Anesthetic
Feelings in hands and legs can be MISSING - Harm Myself without KNOWING
Pins & Needles
Restless Leg Syndrome
Hand tremors

Without going through the book these are off the top of my head!

There would be a full list on another post somewhere about this blog.

NEUROLOGY APPOINTMENT LETTER FOR CMT

There you are and after nearly blowing a gasket with Chase Farm Hospital's call centre and then told there has been no referral letter come through... here it is.

Even when they are right they are immediately proved wrong, lol.

Been thinking about this thing more and more lately but not with respect to me but the rest of my family...

A few things have been somewhat curious but what I can say here is that myself and two brothers suffer with painful backs and have done awhile now. Not sure of my sister in all honesty but we all have varicose veins and circulatory problems.

Of anything else they experience I do not know but I do know of one cousin that suffered from knee problems for years and I am sure if I remember correctly having a discussion about why it still hurts when I think they went through an operation on it to have a fragment removed.

I have had slightly dodgy knees for years until one time and pursuing an upset father, no was NOT me, my right knee snapped and I could not put any force on it for several days. Walking out of the question. Of late my knees are weak and more so in the summer and though they hurt when walking I am damn sure it is NOT the walking that aggravates them but instead the CYCLING! Many things have been an absolute bastard to understand over the years due to, on the one hand, a kind of delayed reaction with some things and one activity causing a pain while then attempting another later!

This is true of both knees and feet and even my back can act up when I least expect it and then ask myself why as I have done nothing to provoke any pain or seizing or locking up. Same is true for upper back and shoulders but I now know this is a delayed reaction, or constant weight at the wrong angle will bring it on quicker. What I mean by that is that the rucksack over one shoulder will have my shoulder freezing up in pain. Using both straps over shoulders and a harness across the straps it will take a great deal longer before its severely uncomfortable.

This is the most important page and I left out the other two, with my PASSWORD and other details and obviously also edited this page too.

AUDIO: NHS PODIATRY APPOINTMENT 221012

OK! Now I had the first of two major appointments today and this one was for Podiatry.

Confused Podiatrist thought I was there about only a painful Corn, which I ripped off weeks back but growing back and just starting to become painful again!

He got a bit of a surprise when I mentioned everything.

While he was staring at my toes I asked him to spot the odd one and he looked up and said they were ALL ODD and WRONG!! LOL.

He contradicted and questioned what was said on the 8th February about my feet and said they had got it all wrong! HUH, surprise, surprise?!

He admitted they had hinted, without stating the conditions, at Dupuytren's Contracture/Ledderhose's Disease but said my toes were all wrong and I agreed and said pointing UP instead of down.

He found my feet and case quite interesting, once we got over the looks I get when I state I know about the bureaucracy of PCTs and NHS and I get that 'your out of your depth' look and I return with raised eyebrows and a 'ohh noo it is THEY that are out of THEIR depths!' LMAO!

He agreed with my suspicion of the trouble being linked back to my road accident, which had always been discounted and disregarded in the past...

He was the FIRST to EVER notice my toes!

He was the first to actually realise and ask me about always cycling everywhere!

He wants their bio-mechanical division to study me?! OHHH YEAHHHH BABYYYY!!

Now this latter statement will lead to discovery of what lies behind the pains in my knees, hip and even my BACK?! Which oddly I am attending ANOTHER appointment for in FOUR WEEKS!

He was also surprised they made me go to Barnet and actually asked if I used to live there then?! LOL. I said no they just made me go all the way up there!

SO in effect I have proved EXACTLY what I had stated previously about the 8th February 2012 appointment and EXACTLY what I stated in the EMERGENCY MEETING with heads of surgery and security I had ALSO recorded and posted up on here in a previous post?!

Shocked at how long I had it and where I have been made to go in the last 5 years too! Why? ...

Well after going all the way up the hill to Chase Farm Hospital, which is where I assumed the appointment was, and locking up my bike I then walked in the building and then realised that it was a 5 minute walk from my house and a 2 minute walk from the Pet Shop store I had just cycled from?!?!

So in 5.5 years I have had the specialists right around the corner from me?!?!?!?!

I HAD ALSO BEEN THERE SEVERAL YEARS PREVIOUSLY TAKING A FRIEND TO PHYSIOTHERAPY SESSIONS!!!

NICE ON NHS, YOU BLITHERING IDIOTS!!

BUT DO NOT TAKE MY WORD FOR IT .... LISTEN FOR YOURSELVES!!

...audio...

http://www.wuala.com/allnights/Evidence/Evidence%20MP3/PODIATRY%20221012.mp3/

I have edited out a ten second segment where I have to give my full postal address, for obvious reasons!!

DON'T MESS WITH THE GRANDMASTER!!!

LMFAO!!