Fibromyalgia myth or real
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Is fibromyalgia real or is it just in your mind like most people think? In this article, we will talk more about fibromyalgia, why most people think it is not real and some facts to think about.
To answer your question, yes, it is real you may not see it but it’s real, it affects 1.5-2 million in the United Kingdom (UK), 4 million in the United States (US) Fibromyalgia has a worldwide presence affecting nearly 1 in 20 people globally. It is reportedly said that fibromyalgia affects 2 to 5% of the population1 globally, and an estimated 3% of the population in South Africa.
It is a chronic pain syndrome that experts believe may be caused by a malfunctioning nervous system. It affects the part of the brain that processes pain signals from the body. That part of the brain is boosting the intensity of normal pain signals and causing the body to feel pain without physical cause. People with fibromyalgia experience muscle pain, tenderness throughout their body, and other symptoms like problems with sleep and memory, extreme fatigue, anxiety, and depression. There is no cure for fibromyalgia because doctors do not know what causes fibromyalgia. Researchers are busy with studies that are looking into the possibility that fibromyalgia may run in families, which may indicate an underlying genetic predisposition to the disease.
Different myths about fibromyalgia and the truth behind those.
Below we are going to look at a few myths about fibromyalgia that you brought to our attention.
There is nothing that can be done about fibromyalgia
There are so many things to be done to improve fibromyalgia symptoms, to decrease your pain, to increase your energy levels. Your doctor may not know about all of them. There are a lot of things that depend on when your doctor learned about fibromyalgia. There are a lot of things that have come up in the last several years. So if you know somebody that was diagnosed 20 years ago the treatments available then are different from what is available now. But over the years new symptoms can come up so always be sure to tell the doctor about all your symptoms.
Is fibromyalgia a middle-aged woman’s disease
Yes, I would say probably many people who are being diagnosed are middle-aged women. But fibromyalgia has been diagnosed in children as young as 5 years old, even in men. Fibromyalgia does not discriminate; anybody can be diagnosed at any age with it. It seems like there is this expectation in the medical community that if a middle-aged woman is complaining about pain and fatigue, she probably has fibromyalgia. And it’s not true, anybody can be diagnosed with fibromyalgia.
Researchers have done some research on why more women get diagnosed with fibromyalgia more than men. Female hormones are believed to play a role in the higher incidence and severity of the disorder. Most women complain that fibromyalgia pain is worse just before and during their period. As many as 90% of diagnosed cases are women. Studies suggest that males tend to get fewer and milder symptoms than women, their discomfort also lasts for shorter periods of time and occurs less often. But we have also had reports from male suffers that some male sufferers have similar levels of pain as women.
Women typically experience tenderness or pain in at least 11 of 18 tender points; men may have only six places in the body that are tender, and it’s been reported that men’s tender points aren’t as painful as those in women patients. But as anyone with fibromyalgia eventually discovers that every “fibromyalgia warrior or a spoonie” as we are also known has different pain levels than another sufferer. Research suggests that women, in general, have lower thresholds to pain than men, which may relate to these endorphin and hormonal differences. Men have a small amount of oestrogen, but it doesn’t fluctuate throughout the month the way it does in menstruating women.
Opioid pain medication is/isn’t helpful for chronic pain
I’m going to give this an asterisk. The reason why is because opioids medication is a lifesaver for some people. For some people, it is the only way to live a productive life by using pain medication. But on the other hand, some fibromyalgia warriors complain about pain increases and other issues because of their pain medication. There are additional side effects, additional complications, additional challenges to managing your pain with a lot of pain killers. If you are not sure about opioid medication, talk to your doctor about your concerns.
Fibromyalgia is a “wastebasket” diagnosis
What do many people mean when they say that “if I have no idea what to do for you, I’m going to throw you in the fibromyalgia waste basket.” We do not know what is wrong with you, so we are just going to classify you as fibromyalgia (FM).
Some who had covid-19 with long-lasting effects are being classified as having fibromyalgia even though they do not have fibromyalgia. It is just simply the closest thing that they can come up with. So that is what they call a fibromyalgia “wastebasket” diagnosis. The fact is that this is not true, some doctors may treat it that way, but fibromyalgia has separate diagnostic criteria. There are ways that you can be diagnosed with fibromyalgia aside from anything else that you might have. Part of that diagnostic criteria is making sure that it is not just because your fire iron is low or not just because of some other condition. Once everything has been ruled out, then fibromyalgia is a real diagnosis all on its own.
I just need to find the right doctor or medication
Now you may have read about what it takes to cope with fibromyalgia, and the fact is there is so much more to fibromyalgia than this. One pill or sell-medicated will not be enough to help. It’s way more complicated than that. Pharmacological treatment has been gradually enriched by a variety of compounds, however, no single drug is capable of fully managing the constellation of fibromyalgia symptoms. Studies have been done and yes there have been new medications that have come out that have been helping the fibromyalgia community. One little pill is not going to fix your fatigue and your sleep, or your brain fog, your pain, and everything else that is going on. And to treat fibromyalgia is to find all the little things that add up to be this big thing. You will not find just one magic pill.
Fibromyalgia is a progressive condition
It’s normal for people with fibromyalgia to progressively worsen. But fibromyalgia is not a progressive illness. A progressive condition gets worse, and you cannot stop it from getting worse. It’s like Alzheimer’s you get medication to slow it down, but it’s a progressive illness it’s going to get worse. Often progressive illnesses lead to death. Fibromyalgia is not that kind of illness; many things can help improve fibromyalgia. Just keep in mind that like with any other illness if you do not take care of yourself fibromyalgia will get worse, take your medication, follow a healthy diet, get enough rest don’t overdo it. You can live a long happy life with fibromyalgia.
Fibromyalgia in children
Over the years fibromyalgia is thought to be only affecting adults but that is not the case, fibromyalgia is also found in children (2%-6%) of school children, mostly adolescent girls the age range is from 9 to 15, symptoms in some children might begin after a triggering event, for example as physical trauma, surgery, infection or prolonged psychological stress. then there are other cases in children, symptoms gradually accumulate over time with no single triggering events.
Headaches
Frequent headaches are the biggest symptom in the majority of children who have fibromyalgia.
Sleep disturbances
Even when they do fall asleep, most of those children have difficulty remaining asleep. Children with fibromyalgia have other sleep disorders, like restless legs syndrome.
Other problems
Children with fibromyalgia might also have: pain, cramping in the lower abdomen, constipation, diarrhoea, trouble concentrating, depression, and anxiety are common in children as well as adults.
Causes
These look like genetic components and are generic as they could be transferred to the next generations, in other cases they could be triggered by specific events, injuries, or illnesses.
Fibromyalgia myth or real? look at this article below to see that fibromyalgia is real.
THE LINK TO OUR RESEARCH
REASON FOR USING THIS RESOURCE
They give insight on how people view Fibromyalgia, but what the truth is around the viewpoint of those that suffer from this invisible illness, clear explanation is given to how this illness works and then that fibromyalgia is the best-studied pain condition
🤔 is it complicated? YES! So we should let the “experts” deal with it? NO!
Those who have a scientific (biological / medical) background are not only familiar with how to handle the as yet not fully understood but many of a more foundational biological background (e.g. I’m biochem, Physio, pharm, biophysics, zoology, plant biol) have a focus on the real nuts & bolts of how cells work, what affects them & how they affect the body. Unfortunately most Dr’s don’t, they’re general (GP’s). I’ve had GP’s that don’t like them scientific approachi brought, others love it as it helps them, & together we get to our goal much faster! We forget the patient Dr relationship should be just that! They need our input & clear, concise, non-embellished descriptions of exactly what is going on that they can match to knowledge bases.
Many see that background as a threat, it undermines who they are (as what they do is who they are given how much of their lives they have invested in it) as in the internet & it’s easy to read an article, say, oh that’s me! & Go to your GP waving it saying I’ve got this, can you fix me! That’s bound to get backs up! Esp if your GP is old school & knows next to nothing about fibromyalgia, indeed your own medical history or why you think you for the fibro idea.
Few conditions have consistent symptomology across all humans. We all display them to a greater or lesser degree, maybe not at all! It could be genetic, environmental, due to other conditions, etc. Why don’t we see this? Ppl seem to have lost a holistic approach to life! We are more than just a few symptoms when it comes to any condition!
I have a genetic form of renal failure. In that respect it is truly “incurable” as it would require the fixing of every copy of the faulty genes in every cell in my body; that some way off as we’re not even sure we have all the genes yet! There are many treatments depending on how it’s affecting the individual, what their life needs are, how bad symptoms are, … In that respect, you could say renal failure treatment is very advanced, but we still don’t have a cure or permanent fix (a transplant, like mine, may last 25+ yrs these days, my dad’s lasted only 10 just 3 decades ago!)
Compare that to cancer & renal failure is positively in the dark ages! Now compare fibromyalgia! Ok, so we are sure it’s something to do with nerves, how & why, 🤷, some complain it’s purely hormonal, again, 🤷, there has to be some truth behind it, doesn’t mean it’s right to the exclusion of all else! {We tend to live in a very black or white world! We like a thing is the cause so a thing is the cure! The human body is a complex machine & we are discovering stuff about this thing we live in constantly! You’d think after a few thousand years we’d have it mailed down? No chance! There’s still 60% of so of the brain we haven’t a clue about & we’re still arguing about where memory is kept, indeed what it actually is! We know next to nothing in reality & need to remember that when dealing with things medical!}
We’re at the stage with fibromyalgia that Louis Pasteur was at with penicillin! We’re looking saying in the dark, collating data, eliminating ideas & still figuring out where best to aim the search for answers! It’s not helped by the fact that we thought we knew, e.g. how cells worked. Recent imaging improvements, etc, have blown all that out the water! If you want an example of the complexity of a cell, just look at a modern copy of the cellular metabolic pathways chart! As a uni student i always had one on my wall! 2xA0 sheets (at least, if i recall) with lots of gaps, question marks & * all over! That was 30+ yrs ago! We must never imagine that collating symptoms, establishing the full cause & execution of any condition & therefore any mediation, intervention, even a cure is going to be anything other than hard going with lots of dead ends, false starts & crazy ideas!
Just look at COVID if you need another example of that!
Also, most of us have some condition or other! For many it’s hidden & they’ll never know! For some it’ll only be discovered too late, yet that helps us learn how to improve things! Even those we think we know will have effects we don’t grasp or even see! (I don’t exhibit all the symptoms other renal or renal Tx patients do! That’s why we talk so much with our consultants! It’s a constant, happening now, learning process! Many things should be logical but science demand we actually prove the link {there’s a story there about my final year degree project you won’t believe! Ask me!} My GP had long been documenting the crumbling of my skeleton! My renal consultant had put me on a special vit D used for renal cases. So if that was all fixed, why ami now diagnosed as having osteoarthritis? Shouldn’t they have seen it coming? I was asking the right questions but clinical thinking want in the right places a decade ago! I asked if mum has osteoporosis, why can’t i inherit it? “Because men don’t get it” i was told! So you’re telling me it’s a sex linked generic conditions? “Um, no… But 🤷” well, i wanted an answer” it took nigh on a decade, eventually the reasoning i presented stacked up & they had to accept what i think of becoming general accepted fact now. In short, the failing kidney can’t repair the skeleton so it falls apart, like an old building. As it does that impinges on nerves & movements become hard, even painful & eventually the joints themselves & bone, full of nerves, is also painful! But it doesn’t happen in all cases!)
This is where it gets interesting! It was recognised that even a transplanted kidney could not restart or continue all the renal processes & it was a process of waiting for symptoms to see which failed. In me, the skeletal repair process failed dismally so I’m on a high calcium, vit D, diet to help mitigate that, as well as medication! When fibromyalgia was diagnosed, one question for me was about the overlap of symptoms! Was the pain the fibro, renal failure induced osteoarthritis, or 🤷? Did it even matter? Indeed, how many symptoms do cross over given all the other conditions I’ve been diagnosed with?
Because my fibromyalgia came last in the list, i have different questions to others who may have had it earlier. But has it made all the other conditions worse or is it magnifying their symptoms? Pain just a combination of the real physical pain i experience tired to the exhaustion?
There’s a meme i love “my mind is like the internet on my computer; 18 tabs open, i can’t access anything, got the waiting symbol on the tab in looking at & hell knows where the music is coming from!” (There are other forms of this one!) Our brains are like a computer! Data in (nerves & hormones) to be processed, decided what to do with & output. Sometimes that output causes conflict, e.g. fight or flight! Sometimes that conflict send the brain itself into meltdown (& no, we have no ideas on that, headaches, bizarre behaviour, neutral disorders, 🤷) it’s a rabbit hole we’ve not even dared look down properly!
Remember, the brain is no more than a massive bank of nerve fibres, just like the ones all over the body. If your nerves act up, give me one reason why the brain wouldn’t? & If it did, would you even know? There!
So bring so that together!
▶️ You can’t look at any one condition in isolation, not w/o the body is happening in!
▶️ You can try to simplify a condition to explain it but you’ll never understand it unless you get into the undergrowth, that is complex! Explain it in layman’s terms but remember & remind ppl it’s incredibly complex & far from understood & this we DON’T have a full picture of symptoms, mechanism & thus cures, if any exist!
▶️ Clinicians are just as much in the dark as you or i, they just have access to up to date, unpublished research!
▶️ Calling it a waste bin diagnosis is a confirmation that the person you’re dealing with is being rather ignorant (face it, i call a spade a spade) it’s just we don’t grasp it yet! Would they call COVID a waste bin condition?
▶️ See yourself, if diagnosed, as an experiment in progress! You get to contribute to a body of learning that in the future will be able to define & maybe even cure this condition! What you said about your symptoms will have been an influence on that! You are part of cutting edge science, even if you feel lousy for having it!
▶️ We don’t know everything! We never will! Not in this life, anyway! So don’t feel bad about not grasping about how it affects you, or the bizarre constellation of symptoms that seem to grab you randomly, you’re not alone!
▶️ You are part of what will define this condition for those that follow!
I hope my insight from both my experience of already having one serious chronic (invariably fatal) condition & the background of a scientific approach has helped to untangle some of this but also deliberately cloud other bits! There is much deeper i could go but not here! Just remember, if you don’t grasp fibromyalgia, you’re in good company, TBH i doubt ANYONE gets it! Do you know any fibro experts? Me neither! 🙄😀
*Sigh* sorry author, must have a little dig at the comment “even men can” arrrgh! Why even men when we don’t even understand it? How many of that global 3% are men? 50% of, 10% of? No idea! As i asked my clinicians, is this sec linked in any way? If you’re going to say “even men can get it” it needs backing up with scientific fact pls. It’s hard enough to have a poorly understood condition, then being made to feel “odd” for being so strange helps no one, esp when the quips, even if unintentional, come from your own camp! Friendly fire is just as deadly as enemy fire! We need to stick together!
I totally agree with the second person. To be honest any layman reading that would have stopped reading after just a few lines. It also sounded like you were saying ‘poor me’ and that they know more about cancer than they do about your kidney problem, I wish that was true, both my Mum and my Dad may still be alive, I’d still have a womb and I wouldn’t have the middle of my top lip missing!! I have fibro, osteoarthritis, hypothyroid, high blood pressure, glaucoma, problems with my ligaments that get calcification doings them and they have to go in and chop it off, I have an overactive bladder, stomach ulcer due to the fact my stomach can’t cope with iron and I’m mega anaemic. Also have a hiatus hernia. Now as you are so knowledgable and appear to know more than doctors, please get back to me and tell me why I have all this. I look forward to your absolute diagnosis!!!!