Excerpts from
Figuring Out Fibromyalgia: Current Science & The Most Effective Treatments
by Ginevra Liptan M.D.
A great book and I will quote her brilliant insight into this condition which is both relevant to me as well as the fact the NHS pretends it does not exist.
"My doctor recommended exercise and anti-depressants, both of which helped me. But the exhaustion and pain continued, so I kept searching for something—anything—to feel better."
”I am convinced that the fascia, the connective tissue surrounding each muscle, generates fibromyalgia pain” exactly what I have starred to Doctors several times only greeted with a roll of the eyes and shaking the head.
"I began to put together why certain treatments had helped me so much, while others did nothing at all." exactly what I have manager to do too except I do not work within the field if medicine not have I ever done!
"Over the past decade, the amount of research in fibromyalgia has increased exponentially, along with its acceptance as a legitimate medical condition." But this book was published in 2011. So by this date Fibromyalgia was almost all figured out. So what happened to the NHS on the subject? Why state all things cannot be linked when I then discover Charcot Mature Tooth Disease, Fibromyalgia and this books quotes another?!
"doctors that insist fibromyalgia is not real, even though there are thousands of studies documenting that it is."
"Fibromyalgia is often treated like a second-class diagnosis."
"No other word in medicine can evoke such a negative reaction among physicians."
"Informally, I have heard doctors say much worse, which is why I half-seriously refer to fibromyalgia as the F-word of medicine."
Need I say anymore? Oh but I will...
"People with fibromyalgia tell me how tired they are of being their own doctor."
"musculoskeletal pain" it is listed at and yet half a dozen people in that department stated they did not know what I was afflicted by!
"After reading this section you will have a better understanding of fibromyalgia than many doctors." Ergo they should start to listen and spend more time with me. A true Doctor and indeed any scientist like myself would and should want to know the answers to the puzzles. Not sit on their arses pandering to bureaucrats so they continue to get paid their over inflated salaries!
"have the flu all the time, with profound muscle pain, achiness, and fatigue. Repetitive motion tends to make the muscle pain worse. Sleep is unrefreshing, and people describe waking up in the morning feeling as if they had run a marathon overnight." this should all start sounding very familiar with things starred in my posts since it's creation.
"most common symptoms in a survey of more than 2,500 people with fibromyalgia were unrefreshing sleep, morning stiffness, fatigue, muscle pain, and problems with concentration and memory" add should this one!
"most troubling symptoms is “fibrofog,”" was preceded with 'one of the...' as well become clear shortly.
"most common are irritable bowel and bladder symptoms, low blood pressure, dizziness on standing, and poor balance. Other symptoms can include frequent headaches, numbness or tingling in hands or feet, and sensitivity to loud noises. More information about the causes of these symptoms of fibromyalgia," I have mentioned the ears and even starred to my brother that I gave away Atomic Floyd headphones costing £130 new because 'they hurt my ears.'
"alternating bouts of constipation and diarrhea” I believe I have explained this several times and even the pain being so great I passed out!
"the fact that people don’t “look sick,” has contributed to the controversies surrounding this illness" and I thank you!! I have letters from several do called Doctors making sarcastic remarks about me looking like a fit gentleman! So much so that I decided awhile ago that I refuse to remove my shirt. Just because I have a fit looking physique died not mean there is NOTHING WRONG. See earlier quote by this Doctor.
"People with fibromyalgia are usually sore in other muscles and tendons, not just the 18 designated tender points. Researchers chose those particular areas because they were found to be the most consistently tender in people with fibromyalgia, and not tender in healthy individuals" I believe I stated on here that I have a dozen symptoms that I refer to. That there are more but spend too much time concentrating on the one that are the biggest pain in the arse. That there are more symptoms but never counted and many I never even considered being linked all down to one thing. Like skin conditions and even the heartburn and vomiting!
"often begin after a trauma such as a car accident"
"does have abnormal test findings" even current Doctor states no tests for it, lol, as did every single health professional since I started mentioning the condition. See the following two quotes...
"Abnormalities can be seen with specialized blood tests that look for certain markers of immune system activity"
"only seen on certain specialized tests that are primarily used for research purposes"
Also of interest was THIS quote...
"Scans of blood flow in the brain reveal abnormalities in pain and stress processing areas of the brain"
"confusion surrounding fibromyalgia is illustrated by the multiple names given to this condition over the past 200 years" interesting is the fact that the condition has been known about for 200 bloody years! Lol. But did not exist because some people claiming to be educated let their fecking pride cause people unnecessary pain and misery, lol.
"“chronic rheumatism” or “muscular rheumatism,” known by different names over the last 100 years...
"In 1904, during a now famous lecture at a London hospital, Sir William Gowers proposed that chronic rheumatism was caused by inflammation of the fibrous tissue surrounding muscles. He suggested that the condition be called “fibrositis,”"
"stress response gets stuck in the “fight-or-flight” mode in fibromyalgia."
"It felt like my spine hurt, my skin hurt, everything hurt. I was sleeping poorly, tossing and turning, and I awoke every morning feeling more tired than before I went to bed."
"One day my hips started aching" and enter stage right, the HIPS!!
"I kept telling myself that this was not fatal and it was not cancer, but it felt like a death sentence to be 26 years old and feel like you were 100" I THANK YOU!! LOL!
"I had a really hard time accepting that it was chronic and incurable"
"Deep sleep is inhibited because the brain is trying to stay alert to fend off danger"
"dizziness upon standing"
"fainting upon standing seen in fibromyalgia"
"Messages sent up the spinal cord from the nerves that sense temperature and pressure can also be misinterpreted." and the feeling hit and sweating!! Just today I was walking around town in agony from feet, knees, legs and ranked up on Tramadol and was in a t-shirt as I was boiling! ...
"may explain the intolerance to temperature extremes or weather-related pressure changes" should I rest my case? Hell, NO!! It will become clear in the next few days why I am putting this here and why now?! Because if I have had my difficulties then I dare say that others have too. This way I can help many different people and many different organisations while setting a really big TRAP?!?! LMAO!
"pain of fibromyalgia can be so debilitating and severe" I am loving this! :D
"Muscles also function normally in fibromyalgia, which initially lead many doctors to conclude that the condition is not real, and must be due to psychological issues" the needing psychiatrist stance, lol. It gets way, WAY better!
"There is indeed something abnormal in the muscles in fibromyalgia—we just have not been looking in the right part of the muscle"
"Imagine hundreds of long rubber bands" I use the term rubber bands several times in this blog!
"Anyone who has experienced the foot pain associated with plantar fasciitis knows how painful an inflammation of the fascia can be" this is just Plantar fasciitis alone. Please recall that it is not text book Plantar fasciitis and that I have emphasised this for ten years plus! It gets WORSE the more you use your feet and NOT GET EASIER. Also it is bilateral for me like most things are!
Ooh I am in ecstasy right now and thinking of the impact that this single solitary post is going to have in the coming months. No doubt I will help Ginevra Liptan MD sell a few cores of her book titled Figuring Out Fibromyalgia: Current Science and The Most Effective Treatments. I downloaded it via Amazon and read it via Kindle.
Hmm remember I stated I was against books being digital and in favour if the real McCoy? Well that stance has changed a but due to portability, now your beginning to get why I also bought a tablet PC I was also not in favour of, I am beginning to see benefits. Though I would really rather be happier buying, or GETTING, both and think it a bit of a rip off at times. I have the app called Comics, be Comixology or something like that, and the DC Comics and Marvel Comics are veer dear to download. Also digital only is not very collectable not good fit proper fans and collectors!
I bet I signed like I had finished? Sorry I wandered a little..,
"Two recent studies using specialized staining techniques of fibromyalgia muscle biopsies have revealed excessive and disorganized collagen and increased release of immune cells and chemicals. These abnormalities suggest excessive tissue damage in the fascia in fibromyalgia"
"This may explain why anti-inflammatory medications like steroids and NSAIDS have never shown any benefit in studies for in fibromyalgia" I believe I not only already made this clear about drugs that do not work and possibly screwed up my kidneys but even have several secretly recorded audio takes on here starting this to a good few Doctors who then did feck all?!
"As early as the 1840s, a French physician noted that diet could affect the development of painful muscle aches" and now yet another cause which I have covered previously and also requires a great deal more money than they are paying me to live on, lol...
"inappropriately getting into bloodstream through a leaky gut" never heard of the term 'leaky gut' before.
"Using gentle exercise as medicine stimulates growth hormone release and encourages deep sleep" I previously stated about my exercising and fit looks! I did this despite the fact that this could give a bad impression but thought it better to be honest and open. I just one I would find evidence for what I said. I felt much better when I was on Disability Living Allowance because I had far less stress and a much better diet among other things!
All things end up in my favour just as I one they would.
"My fatigue improved with Xyrem, a medication that induces deep sleep" Xyrem is the drug I referred to in very recent post that was awaiting approval by the FDA in America. It actually hero's you go into a proper deep sleep which Fibromyalgia sufferers hardly ever do, I now know I do not.
"People with fibromyalgia often tell me that their symptoms get worse after eating certain foods" also seen stated that you end up allergic to caffeine! For those paying attention here, died that ring a few bells too?! Lol!
"abdominal pain, bloating, constipation, diarrhea, and nausea" still all relevant to me as I stated and this lot is on my medical records too!!
"Don’t use the bedroom for non-sleep activities such as work or eating" oops umm I do and this is because of lack of help, money and support along with energy prices, lol.
"About half of people with fibromyalgia have an additional sleep disorder such as sleep apnea or restless legs syndrome" the restless legs but, nothing about the arms yet and curiously my daughter has sleep apnea which scares the hell out of her. Cannot remember what the symptoms are so cannot say if I have experienced it. Damn it now I remember, odd breathing or you still breathing I think. Yes I do get experiences like that but not as bad as my daughters and others I read about. Thank god, have enough as it bloody well is, lol.
"Usually people with sleep apnea are not aware of the multiple awakenings/arousals they experience each night"
"Lying down and trying to relax activates the symptoms, and kicking or moving the legs give temporary relief. As a result, most people with RLS have difficulty falling asleep and staying asleep" damn it! Taking forever and I am waiting to get back onto Plantar fasciitis! Lol.
"None of the commonly prescribed sleep medications like zolpidem (Ambien), eszopiclone (Lunesta), or clonazepam (Klonopin) improve sleep quality" Now I do believe I previously stated that many drugs have never worked, or had much effect, on me?! But diazepam did have a calming influence but refused it repeatedly.
Do not comment and quite what is obvious on these drugs as I did not get this far without knowing and finding out many things, Lol. Plus I might get quite pissed and rude, lol.
"drug called sodium oxybate (Xyrem®) that increases both the time spent in deep sleep and secretion of growth hormone" that new drug again I need to research.
"In narcolepsy, it takes about three months of regular use to reach maximal benefit. Since the fibromyalgia studies only looked at eight weeks of use, there is potential that with longer use it could be even more effective." NARCOLEPSY!! That was the other condition that can cause muscular problems. So there are now the three listed in the same post that can cause multiple muscular pains that the NHS and three dozen Doctors said was NOT POSSIBLE! Charcot Marie Tooth Disease, Fibromyalgia Syndrome and Narcolepsy. God knows if there are others. Post Traumatic Stress Disorder could be another?
Currently my RSI pain is now becoming a huge headache, lol.
"It would be very interesting know whether using sodium oxybate to improve sleep quality could reduce the cognitive difficulties known as “fibrofog,”" this would be so very bloody cool!!
"I always spread out the groceries into many smaller loads, rather than carrying a heavy grocery bag into the house" dies this now explain a few things and sound familiar? Lmao!
"Even more impressive was the fibromyalgia patient that walked in to my office after three months of sodium oxybate treatment who told me her pain was gone. This was absolutely one of the best moments of my medical career" found this a very interesting statement!
"Soon after starting a regular walking program, I developed heel pain and plantar fasciitis" A-HA!! Right now then, I starred that many of my symptoms were affecting me long before the Plantar fasciitis surfaced!! All easily checked throughout the blog posts as well as likely backed up by documentation. Will here is the author, herself a Doctor and a very good one due to her inquisitive nature and intelligence, steering that she actively suffered from Plantar fasciitis and at the exact same time LINKING THE CONDITION to FIBROMYALGIA!!
So ergo when I stated repeatedly that I did not have PF and that it was NOT A TEXT BOOK CASE they should have made the link. One which flick through my medical records and it would be obvious that I have Fibromyalgia, THE END!
Normally when all tests fail to diagnose then it is considered to be Fibromyalgia, except this is not exactly true and way it of date by around 15 years. So why do they say it?!
Also my 120 symptoms, give our take a dozen or so, should have also fine the same thing, this is despite the fact that probably the majority never got mentioned because I was using all my time and pain concentrating on the dozen things they never successfully diagnosed.
Added to these facts are the now likelyhood that many of those I thought a successful diagnosis are actually wrong.
Indeed there are two other things I do have that are not linked to Fibromyalgia and this are my Inguinal Hernias?! Oh except the surgery on the first had left me with pain which COULD be linked to Fibromyalgia and the other Inguinal Hernia?
Well they lied about that one and not only did I prove this but also pulled the offending Doctor to account who then stuttered and stumbled while I was recording him!!
Now I wonder if anyone out there is now realising what I am going to do in the coming days?!
END OF PART ONE!!
