I think a big part of it is that the medical profession doesn’t want to admit how much they still don’t know, both in terms of treating illness or even identifying it in the first place. There is a perception that we are so advanced with science, we have all these amazing tests and treatments now.
So if it doesn’t come up on a test, does it even exist? Or even if we do acknowledge it exists, if we can’t treat it then isn’t it easier to ignore it?
An example – I went to a rheumatologist for joint pain in my hands. After questioning me about other symptoms, he told me I definitely had fibromyalgia, no question about it. He then proceeded to give me no treatment or management options whatsoever and did not want me to come back for a follow-up appointment.
When I next went to my GP, I found out that he hadn’t even mentioned fibromyalgia in his report to her, just a bit of vague stuff about hypermobility. It was like, as soon as he realized I had fibromyalgia, he wanted nothing more to do with me or to even acknowledge my illness because it was inconvenient or embarrassing that he didn’t know what to do about it.
Then with the general public, I think you have two factors at work. Firstly, how are they meant to believe a person has an illness if it’s invisible to them and the medical profession won’t acknowledge it? If the person was really sick, surely it would show up on the fancy tests we have these days, right?
Secondly, there is a very powerful effect where people want to deny that bad things can randomly happen to innocent people. Because if they acknowledge that, they have to acknowledge it could just as easily happen to them. So either it is something the victim did wrong, or it doesn’t exist.
You see this all the time, a person gets a life-threatening disease or has something terrible happen, everyone will say how sad and tragic it is but then immediately start looking for what the person did ‘wrong’ that they don’t/would not do. Eg.
people who get sick didn’t eat organic enough, take the right vitamins, think positive enough
any parent who has something bad happen to their child is negligent, because everyone knows the job of a parent is to never let their child out of their sight for even a second, 24 hours a day until they turn 18.
Given this tendency, what is easier for people to believe? That there are mysterious diseases out there that strike people down for no reason we can determine, for which there is no agreed treatment and that you could be next? Or that people are faking it for welfare benefit and/or have psychological problems?
I saw an answer from a physician, but mine comes from personal experience from fibro (8 years and counting). It’s not a simple answer, unfortunately.
Fibromyalgia, for me, is a reactive condition. What that means for me is that I have a constant level of pain that is my day-to-day pain level. It’s usually somewhere about a 4 or a 5. If it’s a little lower, that’s a fantastic day, but I can survive with a 4 or a 5. However, when I hit certain triggers, that pain level spikes up.
My biggest spike at the moment is stress – I have quite a stressful job – and it will trigger my fibromyalgia and cause it to flare. This may mean that my pain level shoots up to a 7 or an 8 or even a 9. I usually lose my weekends to self-care and recovery, to try to get back to my 4 or 5 levels.
My other trigger is over-exertion, which unfortunately at the moment, is pretty much any sustained activity for over 30 minutes. The physical effort pushes me into a flare. These again are probably about the 7 or 8 levels.
In pain, I’ll notice that my blood pressure and heart rate rise and my resting heart rate will be at least 10 bpm higher than it usually is. My BP will be on the worryingly high side. I can take my painkillers, and rest and relax as much as I can, but I have difficulty doing things like holding my body upright, and everything takes so much more effort.
I also get more emotional during flares because I’m beating myself up for being useless, relying on my partner for everything including helping me to take off my bra. Pain has an effect on the body that people don’t appreciate until they experience it and it goes away. It’s tiring. It’s depressing.
It’s horrible. And because of that, it’s easier to overexert yourself because you have less energy to do the things you would regularly do, which puts you in a flare, which further depresses you… It’s a vicious circle.
I wish that there were more research on fibromyalgia, on the cause and treatments that aren’t huge doses of painkillers. I wish that the opioid epidemic wasn’t making it difficult for people who have a genuine need to get their medications. But it all adds up, unfortunately.
There are theories out there – and I’m basing this on some “opinions” that I’ve had from medical and alternate therapy practitioners, so your mileage may vary – to say that fibromyalgia is a reaction to trauma at some point in your life; physical or psychological.
I once attended a lecture where a woman claimed that it traced back in her life to her parent’s divorce at age 4 and the excessive shouting that took place then. I got told that it’s my body locking up and locking me in, and the only way to combat it was to spend £75 a week for a professional massage, by a doctor whose wife was a professional masseuse and would I like a card and a referral? I’ve been told it just happens.
I don’t have a truth to share on that. I don’t recall a specific trigger for myself. I know that the diagnostic pressure points have always hurt. I remember being surprised when I was told that normally, they don’t hurt people – it’s just pressure for normal people. It’s never been that way for me. I don’t remember a time when I wasn’t in some sort of pain, but it definitely got worse after the age of 25.
I thought I was broken until I got my diagnosis, but when we moved surgeries, I lost the doctor who was actively helping me to deal with it and started having to fight for my condition to be recognized and treated.
I have so far found one medication that helps, but my last doctor would not prescribe it because one of the side effects was weight gain. Lady, I’m already fat, but my fat a$$ can’t do anything about it if I cannot move because I am in levels of pain that you’ve never had to deal with.
So, for fibromyalgia, we live, we survive, we rest, we fight and we do what we can in a body that seems some days to actually hate us.
I am ridiculously picky about my clothes, since mild to moderate Allodynia is one of my Fibromyalgia symptoms. No sleeves of any fabric, soft fleece if I need a jacket. No bra. Between allodynia and costochondritis?
Let them tiddies sag. I like breathing with less pain and not getting rashes. Screw the rules. No wool, cashmere, or other animal fibers. When they are cut, they often have sharp bits. And I’m allergic to wool, soo…
Poly/cotton blends are my go-to. When I was healthy, I tried to wear only cotton, linen, hemp, or the like. But now a blend is the best I can do. That said, each and every item has to be assessed individually. Tags, seams, tight elastics are all bad.
Frightening fashion that it is, rayon is cool, smooth, and usually comfortable. Seams can sometimes be reinforced with plastic thread, though, so watch for that. I buy 90% of my clothes second-hand. They’re cheap, pre-shrunk, and already “broke in”
Never wear new clothes without washing. Chemicals used in the dyes and cleaners are often irritants. I am “fortunate” that my allodynia usually manifests as intense itching. Cool temps help me the most.
Shoes are the minions of satan, and I refer to them as foot prisons. NOTHING helps. I wear sandals year-round and when sneakers or trainers are required, I wear one brand.
Not all Rheumatologists (especially if they had been trained some years earlier and belong to the older generation) believe in Fibromyalgia.
Even if they “believe”, not all are comfortable with managing patients with Fibromyalgia for diverse reasons. One very common reason (which doctors only admit to other doctors) is that Fibromyalgia patients are generally difficult (I sympathize with those patients) as they are generally mistrustful of doctors in general after all their bad experiences with doctors.
b) Whether they are comfortable and happy treating patients with Fibromyalgia.
If the answer to either of these questions is a No, ask politely for suggestions for a Rheumatologist who is interested in managing these patients. You would be surprised that there are many. Fibromyalgia is a test of a Rheumatologists utmost all-around skills.
The first order of business is confirmation of Fibromyalgia which is completely clinical. (It involves bedside tests and interviews. There are two criteria for diagnosis both of which are valid. Remember that a diagnosis of fibromyalgia does not exclude any other diagnosis.
Therefore the second order of business is to look for and exclude any other disease that may co-exist or may have triggered fibromyalgia by increasing the risk. The more recent your fibromyalgia, the more the need to look for other associated conditions.
If you find something else along with fibromyalgia, the doctor’s job gets easier. (If you have the disease for 10–15 years, there would be little doubt and the doctor may be able to make a diagnosis just by talking to you)
Managing patients with fibromyalgia is multi-dimensional. Patient education is key so as the patient gets reassured that fibromyalgia is a non-life or limb-threatening benign disease of just pure pain and suffering. So it is important for the patient not to let the disease get to them and fight it valiantly and refuse to be impacted in everyday life. The doctor is there to help you do that.
The treatment would involve drugs that alleviate the different symptoms as well as lifestyle changes. Exercise and good sleep are the cornerstones of Fibromyalgia management. For those who find exercise painful, it is important to have a structured regimen where you start slow and slowly increase the level of exercise.
Improved sleep either with lifestyle changes or with fibromyalgia medicines would have a direct and immediate impact on your pain and other symptoms. Reducing weight is important for those who are obese, as they are in general less likely to respond to drugs (contrary is also true, those who are lean tend to respond better to drugs).
I have seen patients who did not respond to any drugs getting cured simply with exercise and weight loss. While there are several drugs for fibromyalgia that are approved (pregabalin, duloxetine) or off-label, the choice of the first drug should be determined by the specific circumstances of the patient including co–morbidities and is not going to be covered here.
Suffice it to say that different individuals respond differently to different drugs and it is important to find which drugs or combinations thereof work best for any given patient. Therefore, the patient should have patience and stick with your chosen rheumatologist and give him enough time to optimize your management.
I was diagnosed with Fibromyalgia in 2015 and have been finding ways to keep going!
Well, let’s look at this logically.
When a person goes missing alien abduction is not on the police’s mind. At no point in their investigation does a detective state “should we not consider alien abduction.” When they have completely exhausted all areas of questioning they have to move on and they leave the case as an open “cold case.”
The person has disappeared and they are actively choosing to remain so for whatever reason.
The person has had an accident in a place where anybody can find them and sadly they die.
Someone has abducted the person and either they have found no evidence or their inquiries did not look into this perpetrator.
At no point even then do the police consider alien abduction. This is something that others may consider on internet forums and chat rooms. It is outside of the general psyche.
Fibromyalgia is a syndrome that most up-to-date physicians are / or should know about.
There are no specific tests (at this point in time) to detect Fibromyalgia so the Doctor tests for other conditions that have similar symptoms to Fibromyalgia. When they have tested a patient for several other conditions and all the tests have come back clear and the symptoms have remained for six months or more a Doctor will give a diagnosis of Fibromyalgia.
Medical knowledge is not complete doctors are learning new things all the time. There may be several new conditions that come under the umbrella of Fibromyalgia at the moment. Even if doctors don’t agree with Fibromyalgia as a diagnosis, most of them understand how much their patients are suffering.
At one point they didn’t know or understand HIV or Aids, at one stage they didn’t understand or know how to treat cancer. As lifestyles change to adapt to the changes in how people live and work new medicalconditions arise.
I have a feeling that the person who asked this question was trying to be funny, however, Fibromyalgia is very far from a joke. So I have given Fibro the respect it deserves and answered this question, as a byproduct of this I have treated the question with respect, that part is unfortunate and all I can hope for, is that the person asking this question never has to understand the reality of living with Fibromyalgia.
Karma may have other ideas and may make the question asker regret this.
Yes. The underlying disease process causing the symptoms known as “Fibromyalgia” can include an increase in anti-cardiolipin antibodies known to increase the risk of clotting and thus miscarriages.
For more information, Regarding “Chronic Fatigue Syndrome”, “Fibromyalgia”, “Chronic Lyme” & other chronic diseases in which the patient is frequently told by their doctors that; “you look fine, I can’t find anything wrong with you despite all of the labs that I’ve run”.
Chronic Inflammatory Response Syndrome (CIRS) refers to an immune system malfunction in which the immune system essentially has a broken “off” switch. Up to half of the general population appears to be genetically susceptible (shoulda’ picked better parents) to this disorder.
“Genes load the gun, exposure pulls the trigger”, what does “exposure” mean? It can be one of many things–anything that promotes a pro-inflammatory cytokine “storm” including sepsis, Covid, mold-related illness, and other issues. Mycotoxins, poisons secreted into the local environment by certain molds/fungi, Lyme Disease, Pfiesteria, Ciguatoxin, even exposure to certain vaccines such as the Lyme & Gardisil vaccine can create the surge of inflammatory cytokines that trigger the onset of the illness.
The International Society of Environmentally Acquired Illness is a professional organization of practitioners experienced in treating this illness. Few physicians even recognize this illness other than calling it by the above names, much less have the awareness that it can be treated and reversed or the fact that while causing great suffering, it also frequently shortens lifespan.
If this doesn’t work, get a good medical evaluation
Lyme Disease, I am embarrassed to say that many of my colleagues “don’t believe” in certain diseases such as “Fibromyalgia” & “Chronic Lyme Disease” as if this was a theological or philosophical debate.
It’s not, It’s “applied biology”, AKA “Medicine” just as “applied physics” is called “Engineering”.
Sir. William Osler MD once said that “to know Syphilis is to know medicine” because syphilis (a disease that is caused by a spirochete–same family as Borrelia that causes Lyme) can affect so many different organ systems, causing great suffering and shortening lifespan with many types of clinical manifestations/malfunctions of virtually every organ system.
The fact that with both diseases there’s a long “latent” (asymptomatic/relatively asymptomatic, or with such a bizarre assortment of intermittent, nonconstant symptoms) doesn’t help.
Add to that the fact that most current lab technology has a false negative rate greater than 50% (over half of the folks with the disease test negative–as if they don’t have the disease).
In most infections, there’s a clear presence of “cure”. Chest X-rays after pneumonia clear up after infection resolves, blood counts return to normal, blood cultures become negative–the patient is “cured”.
Not so with Lyme; with most/many labs and imaging reports being normal with the disease–how do we know for certain when “cure” has happened.
Furthermore, there are two major professional organizations that weigh in on Lyme. The Infectious Disease Society of America (IDSA) is very stringent with its diagnostic criteria and when to use antibiotics to treat.
The International Society of Lyme-Associated Diseases (ILADs) has much more “liberal” criteria regarding when to “call” the diagnosis as positive and for how long to treat with antibiotics.
State Medical Boards have also been known to persecute (yeah, not prosecute, persecute) practitioners who recognize the serious nature of Lyme and treat it aggressively.
It’s a confusing illness, hard to diagnose, IMHO very undiagnosed with a H U G E portion of our population suffering due to it. There’s also strong evidence that it was genetically altered by the Dept of Defense to increase its virulence as a biological weapon with research done on Plum Island CT.
That’s the “short take” on “What’s the deal with Lyme disease”.
Honestly just understanding, no suck it up, it can’t be that bad, get out and do something, it’s an illness that we never know how bad we’re gonna be so plans are pointless, invite but don’t get upset if they bail, etc, when we do get good days you can guarantee we will do all we can then have a crash for 2 weeks as did way too much, a job looks simple to you not so much to us.
I get bad paraesthesia just typing imagine having to scrub the shower I look and know in 1/2 minutes I’m going to have crippled hands so why bother to start, or we can start a job then gets too hard so we move on to another simple thing and repeat till everything is a bit done, etc, most people with fibro are just angered by assumptions like we love being “lazy”.
We enjoy bailing on plans or eating toast as haven’t the energy to go shop or even not eating as can’t even manage that, seriously I have eaten one mouthful, and like nope I can’t even lift a spoon or have the energy to chew my food, we’re tired all the time except for like 2 hours when it’s midnight, oh then is 50/50 if we can sleep and even if we do sleep we do not hit deep sleep so always tired which causes more pain.
Which causes worse sleep issues which causes more pain…. round and round it goes, so we have to have an order I need to do x.y z they are a must so we do those and anything else is a bonus, look up “spoon theory” this may give you more of an idea, or for example, let’s say you have a phone the charging is unpredictable you plugin for the night and is a surprise what % you may get so you wake up.
It’s at 50% everyone else is 100% I have the same things to do as you but on 50% battery so have to optimize, leave out some things that take me down to 0 plug phone in the next day because I had to squish stuff in and that messed up my “battery” more today I have 40%, 3 days later I’m only getting to 5% so I need to do nothing to try let battery recover to a better amount.
Also as my battery is “weak” what takes your battery 1% to do takes mine 4%, so for you having a shower jump in scrub feel refreshed, etc, for me a shower actually takes energy away from me, a walk to the corner shop for you nothing for me like walking the marathon with a limp, we also are VERY good at faking being fine, as we can’t just lie on floor screaming due to the pain all day.
Just picking up a cup can make it feel like a bone has broken in my hand but I can’t scream every time, we can “continue” with pain most people rush to er for, but in the confines of our homes we’re in pajamas easy clothes, pottering when we can resting and chomping meds that don’t help much, so basically anyone you know with FMS feels shit enough as is w/o people who cannot know what it is actually like judging.
“Just exercise” “you need change diet” ya de ya trigger phrases do NOT use them, and in my experience most of US with FMS just want people to grasp what we are dealing with and not brush it off, believe me, most of us at Doctors begging for any fucking help so we’re not this pointless waste of flesh but there’s not even a definitive way to diagnose it let alone treat it.
I am using FMS as fibromyalgia syndrome as it is NOT one problem it is up to 200 symptoms so do you think we’re having fun? headaches lasting weeks? bruising easily, IBS, brain fog, short term memory fucked to shit, I’m at can forget what doing while I am doing it, paresthesia, vertigo, dizziness, eye muscle weakness, just to list a few symptoms bar the “pain”
For those of you who don’t know what Fibromyalgia is, simply put Fibromyalgia, aka fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.
In addition to chronicpain throughout my body, I am always tired. Sometimes I am so tired that my husband has to help me up the stairs and into bed.
Then, every day around 3:00 – give or take a half an hour – I have to try to live with fibro fog. It’s actually what it sounds like. In the late afternoons, it feels like someone has pulled a gauze bag over my head. I can still see out and I can hear voices, but everything is muted and fuzzy.
I can pay attention to what someone is saying, but don’t quite understand it. And within minutes I’d forgotten what we talked about. I feel confused and “out of it.”
One of the worst changes I have gone through with fibromyalgia is becoming less intelligent. No one seems to talk about this but it’s true. I used to be really smart. I was the major caregiver of our two children ages 5 and 2 with one of them already exhibiting signs of mental illness.
I started a business with no college degree or money and grew it until it was quite successful. I volunteered in our community acting as an election official in various elections. I was the executive director of a community-wide outdoor celebration that attracted about 20,000 people each year.
Today, I would not be able to keep track of all the details, and I would not have the energy to juggle all the people, business needs, and community expectations that surrounded me.
As far as recognizing I had FM – I didn’t. I got sick in 1989 and although I saw numerous doctors – some of whom were specialists – no one could find anything specifically wrong.
Remember, even though FM had been written about in the medical literature for centuries, it was a new medical disorder in 1980. And for that decade, and even longer, it was not accepted as a “true” disorder. Because 98% of FM sufferers are women, many patients were referred to mental health professionals.
Finally, in 1996, I went to see a new rheumatologist. He spent a long time examining me and asking questions. When he finished he said, “You have fibromyalgia.” I had never heard of it. He gave me a brochure and said,
“The good news is, it won’t kill you.”
Wait, what?
No, it won’t kill you; it’s a life sentence with no chance of parole.
I’ve had 30 years to make my peace with fibromyalgia, and I don’t let the various symptoms upset me or cause depression. I don’t talk about it very much anymore. I’ve come to the conclusion that this pain and fatigue aren’t a symptom of something wrong with me that needs to be fixed. The pain and fatigue have shaped the person I am. They are as much a part of me as my heart and lungs are.
The short-term memory loss, insomnia, lack of appetite, Irritable Bowel Syndrome, and whatever else I can’t think of at this minute (it’s 3:03 pm and soon the fibro fog will come) define me as much as the color of my eyes and my smile.
I don’t complain about FM symptoms anymore. My husband is doing his best to take care of me and he doesn’t need to put up with a bunch of complaining and whining. If I need to cry about a missed opportunity, I do it when I’m alone.
Fibromyalgia is not only affecting me. My husband, family, and friends are experiencing it second hand through how I act and what I say. Fibromyalgia is miserable. The people around me have their own problems; they don’t need to take on any of mine.
Well, that’s a loaded question, isn’t it? You are implying that not believing in a condition’s existence is in some way incorrect.
An honest answer effectively requires admission of fault, which is incorrect and inappropriate. Nonetheless in the hope of providing some balance, please read on. Be warned that if you have fibromyalgia as a diagnosis yourself, you may not like what follows, and may even feel insulted.
This is of necessity a short article for social media, not a scholarly paper or proper piece of persuasive writing. Even so, it is a fair and honest appraisal of the condition, and given that using this approach I have been successful in ridding many, many people of this unhelpful diagnosis over the years, it is probably reasonably well-founded.
As a diagnosis Fibromyalgia is a bit of a non-entity. There is neither plausible cause nor effective treatment (as of August 2018) In the absence of both, it is perfectly reasonable to say that it is not a disease.
In fact, there is much to be said for Fibromyalgia as a diagnosis causing a huge amount of harm.
Firstly, the condition has multiple symptoms, often unrelated, and all subjective. Subjective symptoms may be induced in patients quite easily, so simply reading information leaflets about a condition with such symptoms can actually worsen the impact on patients.
Secondly, having been diagnosed with ‘fibro’ most patients then cease to seek any further diagnostic option, instead of sinking into chronic pain dependency.
Fibromyalgia is somewhat akin to Irritable Bowel Syndrome which we now know not to be a condition at all, but instead, a symptom constellation indicating no serious underlying bowel pathology. In fact, there are several conditions that cause the symptoms of IBS and they are mostly treatable – less than 10% remain undiagnosed and treated these days.
That is not to say that the suffering is not real, but it would be more honest of the doctor to say “you are sore and I don’t know why” than to label your pain with an unhelpful and potentially harmful name.
As with IBS most fibromyalgia does have a cause and is easily treated. It is then, however, not called fibromyalgia.
Common causes include:
Bad posture – forward head posture accounts for almost every diagnosis of fibromyalgia and it completely explains all the upper back and neck symptoms typical of the condition, including the trigger points. It sticks in my craw to say this but see a chiropracter – you’ll get fixed in no time.
Bad posture – much of the rest of fibromyalgia is due to other postural issues, especially apparently minor mispositioning of the body during rest.
Depression – the pain of the condition leads to low income, poor work and thus to a defeated posture – see answers above.
Injury – injuries can lead to gait and posture changes which cause persistent pain.
A diagnosis of fibromyalgia in a friend or relative. It is quite infectious, though as far as we know there is no agent that transmits the disease.
Fundamentally, fibromyalgia is not a disease, it is a name given when the doctor is fed up with you and simply does not care enough to come up with the real diagnosis, or where you yourself are resistant to the possibility of treatment.
Almost all patients I see (and cure) who have been diagnosed with fibromyalgia and have had it for some time, share one of two sets of characteristics – they are determined to fight the disease or they have given in to it. Both are wrong.
Firstly it is not a disease, so you can’t fight it – you can just find the cause in your case, which is likely not exactly the same cause as the next person, and fix that. It can take a few months and often the cure starts off being worse than the disease. Trying to fight it and push on through it simply results in exhaustion and more pain which are, funnily enough, the key features of fibromyalgia. Oh…
Secondly, you can’t use it as an excuse. You will never get better if you consider yourself to be a victim. Painkillers don’t help the condition and only actually make this aspect of the illness worse. Cannabis helps you not to care but actually ends up making the condition worse. Whoops.
So how to fix it.
Find out why you are sore and stop doing it. It’s your posture. It’s so often your posture it’s probable that ALL fibromyalgia is a postural issue. That’s not to say that the correction will fix it at once – it can take months and may hurt more in the beginning, but with patience and a little support you can overcome one of the most harmful misdiagnoses in medical history.
Stop using painkillers – they don’t help. You will of course get worse when you do, but only briefly. Use them occasionally when you have really bad days.
Do not use cannabis. Total rubbish and will simply end up with you being stoned all the time. Also it tends to make the condition worse over time because not only do you fail to correct issues, you will often adopt postures that make it worse. Sure it helps you sleep and makes the pain feel better yadda yadda yadda – read the previous paragraph until you understand.
Placebos, meditation, and gentle exercise are very helpful.
A healthy diet is essential. Lots of whole foods, lots of vegetables. Limit fat, dairy, meat, sugar, and processed foods. (no specific evidence in fibro but it will really help you in so many ways)
So you ask how often I put my opinion onto patients, well, all the time, but then I don’t have patients with fibromyalgia any more. They haven’t left my practice either. They have got better. They have had their pain diagnosed and treated correctly and effectively.
