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.
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”
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.
This can be a difficult question to answer because fibromyalgia affects everyone in differing ways; however, there is one overarching thing that makes it worse, not moving. Although it can feel horrific to move at times, not being active will only make things worse.
On really bad days all I can muster is walking my dog 10–20 minutes 3–4 times in the day. It’s not a lot but it helps. I’ll also do light stretching on really bad days. Just making sure to not spend the whole day on the couch or bed and getting up every so often and moving around will help.
On days when I still hurt a lot but I’m not absolutely fatigued I’ll call a friend to meet me at the dog park. This helps because it distracts me from the pain while getting me moving for an hour or two (sometimes taking breaks to sit on a bench).
Having my dog has helped me tremendously with my fibromyalgia for the sheer fact of forcing me to move every day, no matter what. Plus it’s nice to have companionship when you do feel terrible.
Another thing that can really aggravate is a bad diet. Sugar especially is bad because it causes inflammation, poor digestion and can cause bad crashes when I’m already fatigued. Same with fatty foods.
The first thing I suggest to anyone dealing with fibromyalgia is to talk to their doctor about medication. Even though I’m a believer in making good life choices and having your body heal itself, if the pain is so bad that you cannot even begin to think about exercise or am exhausted at the thought of trying to buy healthy food and preparing it, medication can help get the ball moving.
I take Cymbalta for my pain and it’s helped enough where I could start doing yoga again, which in turn gave me the motivation to eat better.
Make sure to eat well and eat protein (protein powder in a shake with lots of veggies, fruit, and yogurt are great) because I find it hard to keep muscle since I cannot exercise hard enough/regularly enough to sustain it. I also stretch thoroughly before bed and when I wake up in the morning because sleeping for 8 hours makes me quite stiff in the morning.
And finally, smoking, too much stress, or not getting enough sleep can all aggravate fibromyalgia. Meditation is a great way to help with stress levels and being able to endure the pain. There are great apps and websites that have free or cheap meditation. They have helped me tremendously by not letting me fall into a depressive episode during a flare-up.
What I found in 35,000 hours of work going back to 1978 was that lots of things can start FMS, CFS, and other things; injuries, viruses, bacterial infection, and other things that the body attempts to heal for months and years and such. When it fails at healing the “chronic symptoms” develop. They are secondary symptoms, symptoms caused by failing to heal in 3 to 6 months more or less. Most of these symptoms are secondary symptoms.
I was hit by a truck running a red light. I had three fractured vertebrae, two lopsided crushed disks, many damaged disks in the spine from low back and up, damaged dorsal horns on the left side from over-extension, causing loss of about half my back muscles on the left. I have had chronic pain ever since. Before the crash, I had, in high detail, perhaps 25 chronic symptoms. As the healing proceeded sort of on the new injuries after a while many of the symptoms seemed to morph into other ones. I still have pain in various places from various injuries. I’m developing scoliosis possibly because of the copper deficiency causing connective tissue breakdown in many parts of my body that were the result of refeeding syndrome healing 200 other symptoms including essentially all or most of the symptoms of all those named collections of syndromes.
Aside from injuries and ongoing refeeding syndrome damage I can’t be diagnosed with any of those things anymore. I don’t have the symptoms that define FMS, CFS, etc anymore, and haven’t for 10+ years. The symptoms I have are related directly to the induced deficiencies of refeeding syndrome. It was great as all the fibro pain, the 18 points, and muscles all over the body returned to normal, healed, and grew back to what they were before atrophy, except the damaged nerves fed muscles. I don’t have exercise intolerance anymore for instance. I can walk 2.5 miles in 35 minutes and do it again if I have time. In the summer I walk 2.5 to 5 miles a day and typically 400 to 1000 vertical feet up and down at 7000 feet just getting around to the swimming pool or community kitchen or the clubhouse or sauna or my RV site. I have been doing that for more than a decade now. That would have been impossible if I still had FMS. I was diagnosed with it multiple times after it had been named 20 years or so after I manifested it.
I can walk down the detergent aisle in the supermarket without an asthma attack or any discomfort, no more MCS. No more IBS but I got liver damage with the copper deficiency. My doctors now call it a different syndrome, chronic pain syndrome in place of refeeding syndrome as the “refeeding syndrome” is popularly thought of as only a total starvation result. However, the same things can be 40 years of pinpoint starvation which can also be caused by CyCbl, HyCbl, folic acid, folinic acid, vegetable folates, glutathione, NAC, and various other things of a genetic cause because those cause cell formation failure the same as lacking MeCbl, AdoCbl, and L-methyl folate in some people.
In 2003–2005 I did an N=1000 private study to develop (I’m was a systems analyst, consultant, and software developer and became too disabled to keep working and couldn’t get SS at that time because FMS and CFS “aren’t real, just a bunch of fakers”. In addition to the disorders in the header and I’ve mentioned here I was diagnosed with “ a secret lying alcoholic”,” yuppie flu”,” an imaginary woman’s disease” (FMS), “faker” (MS for decades before it was recognized),” liar”, hypochondriac, “nobody has that many symptoms liar”, “conversion disorder”, “It’s All In Your Head”. Could that many docs be wrong? In reviewing 15 or so union groups each year it was obvious that docs repeating the same insulting wrong “diagnoses” and treated badly people with FMS and CFS. These names I was called are par for the course in diagnosing FMS and CFS.
Over 18 years what I was treating was a multitude of secondary symptoms. Essentially everybody who doesn’t complete healing in 3 to 6 months develops chronic disease syndrome dependent upon details. These secondary symptoms can be reduced tremendously. So everything that can be healed isn’t the cause of FMS. What causes secondary symptoms can be literally almost anything which is why the “cause” has gone from chronic mono, it took me two years to heal many of the secondary symptoms after mono. And traumatic injuries are thought to be involved in 50% of cases of FMS and so on.
So the hypothesis of refeeding syndrome can be tested. On May 21, 2003, I knew within 10 minutes of putting a sublingual MeCbl in my mouth of exceptional qualitative effects that my life was changed. People who have a lot of symptoms on that questionaire I started so many years ago reacted strongly to the MeCbl inside of 1 hour. From there generally, in about 3 days potassium and/or l-methyl folate deficiencies blossom forth which then need to be titrated until the symptoms are gone and then maintain the new dose, and go to the next set of symptoms. Once cell making is started well a person gets into the refeeding groove and then there is prediction after prediction of patterns of symptoms and as you match up the pattern you know what to use next. About 75% of people with many of the symptoms patterns respond to MeCbl in an hour if it is of sufficient characteristic. 80–85% with L-methyl folate added in, 85–90% with AdoCbl added, 90–95% with L-carnitine x (the kind that knocks your socks off, and that is subject to change as the body heals) and finally, vitamin D can increase by another 5% or so. 20% of those who forgot having any of the symptoms had them suddenly improving said” Oh the doctor said these symptoms are nonspecific and meaningless so I just forgot about them”, and then they named off many of the usual symptoms. Men did this the most.
As response if done correctly, and I have a list of the 95% reasons why what a person does, doesn’t work, happens very quickly and progresses in about 5-day cycles potentially, there is not a long time of waiting to see if it works. Then suddenly all of the person’s fears come up in the form of hypotheses like “detox” theory and other things that stop a person from doing what is needed to heal. To many people, this whole thing seems terribly unintuitive. Vitamins are not drugs. For instance, as a trace mineral vanadium in the form of vanadyl sulfate is used to get rid of a deficiency and does its a thing at 2 mg rather than the pharmaceutical dose of 200–400 mg to try to force it to work. However, it only makes a noticeable effect if it is deficient. That is true of all these nutrients. If they do anything, they are helping to make cells that then cause the next in line set of nutrient deficiency. Only the thing stopping cell formation has a near-immediate response to the just caused or worsened symptoms. So in doing this you are playing a dangerous game of “refeeding syndrome”. I have had severe damages from copper and boron deficiencies because they were not recognized for 7 or more years.
The one that can kill you if ignored or called “detox” sometimes, to be weathered instead of corrected immediately, is hypokalemia. And the rate of drawing on potassium faster than it can be reloaded to the serum from the tissues can cause hypokalemia, low potassium symptoms. It can happen as high as 4.3 or maybe higher. The things like heart irregularities that low potassium causes are not pegged to the value of a lab test but rather on the ability of your body to supply the amount of potassium when it is needed. It doesn’t wait for “my evening dose”.
The CblC disease review study that recognizes the adult-onset type says plainly that electrolyte instability is usual in either the disease or the treatment of it, and again it is a genetic cause of “starvation” and treating it is refeeding syndrome all over again. It causes all the usual symptoms, hundreds of them until it kills.
I was desperate. I would have been dead of congestive heart disease back likely in 2004 or so. My internist said after a year of seeing me visibly change every 3 weeks that “I have never seen anybody come back from so far over the line.” Something to consider on CHF. The 10 years after diagnosis mortality rate of CHF is 80%. I’m 25 years post-diagnosis and I don’t have congestive heart failure any more. I lost 85 pounds of water, 50 pounds of fat and restored 50 pounds of previously atrophied muscle in a two-year period after 2–3 years into healing. I weigh under 200 pounds instead of 285 with thigh muscles no thicker than my thumb.
People are used to suffering for decades. For the last 10+ years before I started MeCbl (before it was available) I woke up every day after 3–5 hours of sleep, lousy sleep, limited by pain, with tears running down my face before I’m awake and wishing I was dead. The reason this whole business even exists at this widespread fashion is because of a lab mistake that won a Nobel prize because the mistake wasn’t discovered for 11 years and then basically ignored in the USA and many other places. And they use folic acid and poison many of our population by putting it in white flour and many other things. Only half the people can use it up to about 800–1000 mcg and they may need 45 mgs of l-methylfolate to heal, determined via titration. Doctors telling us that we are not important, that these things are not serious and not healable. Of course, they all read the same bad research so it isn’t the doctors missing it. There is essentially fake news back in the foundation of our present nutritional logic which wreaks havoc with our health. Part of the problem is the “abnormal” have become “normal” in the past 70 years of CyCbl and folic acid caused chronic deficiencies have made many tests just plain wrong.
Here is a “short” version of the information to do it. It isn’t anything like “take 2 every 4 hours”. Instead, it’s a method to recognize deficiencies and correct that which stops making cells where you can see or feel the differences.
What I found in 35,000 hours of work going back to 1978 was that lots of things can start FMS, and CFS and other things; injuries, viruses, bacterial infection and other things that the body attempts to heal for months and years and such. When it fails at healing the “chronic symptoms” develop. They are secondary symptoms, symptoms caused by failing to heal in 3 to 6 months more or less. Most of these symptoms are secondary symptoms.
I was hit by a truck running a red light. I had three fractured vertebrae, two lopsided crushed disks, many damaged disks in the spine from low back and up, damaged dorsal horns on the left side from over-extension, causing loss of about half my back muscles on the left. I have had chronic pain ever since. Before the crash, I had, in high detail, perhaps 25 chronic symptoms. As the healing proceeded sort of on the new injuries after a while many of the symptoms seemed to morph into other ones. I still have pain in various places from various injuries. I’m developing scoliosis possibly because of the copper deficiency causing connective tissue breakdown in many parts of my body that were the result of refeeding syndrome healing 200 other symptoms including essentially all or most of the symptoms of all those named collections of syndromes.
Aside from injuries and ongoing refeeding syndrome damage I can’t be diagnosed with any of those things anymore. I don’t have the symptoms that define FMS, CFS, etc anymore. I don’t have exercise intolerance anymore for instance. I can walk 2.5 miles in 35 minutes and do it again if I have time. In the summer I walk 2.5 to 5 miles a day and typically 400 to 1000 vertical feet up and down at 7000 feet just getting around to the swimming pool or community kitchen or the clubhouse or sauna or my RV site. That would have been impossible if I still had FMS. I was diagnosed with it multiple times after it had been named 20 years or so after I manifested it.
I can walk down the detergent aisle in the supermarket without an asthma attack or any discomfort, no more MCS. No more IBS but I got liver damage with the copper deficiency. My doctors now call it a different syndrome, chronic pain syndrome in place of refeeding syndrome as the “refeeding syndrome” is popularly thought of as only a total starvation result. However, the same things can be 40 years of pinpoint starvation which can also be caused by CyCbl, HyCbl, folic acid, folinic acid, vegetable folates, glutathione, NAC, and various other things of a genetic cause because those cause cell formation failure the same as lacking MeCbl, AdoCbl, and L-methyl folate in some people.
In 2003–2005 I did an N=1000 private study to develop (I’m was a systems analyst, consultant, and software developer and became too disabled to keep working and couldn’t get SS at that time because FMS and CFS “aren’t real, just a bunch of fakers”. In addition to the disorders in the header and I’ve mentioned here I was diagnosed with “ a secret lying alcoholic”,” yuppie flu”,” an imaginary woman’s disease” (FMS), “faker” (MS for decades before it was recognized),” liar”, hypochondriac, “nobody has that many symptoms liar”, “conversion disorder”, “It’s All In Your Head”. Could that many docs be wrong? In reviewing 15 or so union groups each year it was obvious that docs repeating the same insulting wrong “diagnoses” and treated badly people with FMS and CFS. These names I was called are par for the course in diagnosing FMS and CFS.
Over 18 years what I was treating was a multitude of secondary symptoms. Essentially everybody who doesn’t complete healing in 3 to 6 months develop chronic disease syndrome dependent upon details. These secondary symptoms can be reduced tremendously. So everything that can be healed isn’t the cause of FMS. What causes secondary symptoms can be literally almost anything which is why the “cause” has gone from chronic mono, it took me two years to heal many of the secondary symptoms after mono. And traumatic injuries are thought to be involved in 50% of cases of FMS and so on.
So the hypothesis of refeeding syndrome can be tested. On May 21, 2003 I knew within 10 minutes of putting a sublingual MeCbl in my mouth of exceptional qualitative effects that my life was changed. People who have a lot of symptoms on that questionaire I started so many years ago reacted strongly to the MeCbl inside of 1 hour. From there generally in about 3 days potassium and/or l-methylfolate deficiencies blossom forth which then need to be titrated until the symptoms are gone and then maintain the new dose, and go to the next set of symptoms. Once cell making is started well apersongets into the refeeding groove and then there is prediction after prediction of patterns of symptoms and as you match up the pattern you know what to use next. About 75% of people with many of the symptoms patterns respond to MeCbl in an hour if it is of sufficient characteristic. 80–85% with L-methylfolate added in, 85–90% with AdoCbl added, 90–95% with L-carnitine x (the kind that knocks your socks off, and that is subject to change as the body heals) and finally vitamin D can increase by another 5% or so. 20% of those who forgot having any of the symptoms had them suddenly improving said” Oh the doctor said these symptoms are nonspecific and meaningless so I just forgot about them”, and then they named off many of the usual symptoms. Men did this the most.
In response, if done correctly, and I have a list of the 95% reasons why what a person does, doesn’t work, happens very quickly and progresses in about 5-day cycles potentially, there is not a long time of waiting to see if it works. Then suddenly all of the person’s fears come up in the form of hypotheses like “detox” theory and other things that stop a person from doing what is needed to heal. To many people this whole thing seems terribly unintuitive. Vitamins are not drugs. For instance, as a trace mineral vanadium in the form of vanadyl sulphate is used to get rid of a deficiency and does it’s the thing at 2 mg rather than the pharmaceutical dose of 200–400 mg to try to force it to work. However, it only makes a noticeable effect if it is deficient. That is true of all these nutrients. If they do anything, they are helping to make cells that then cause the next in line set of nutrient deficiency. Only the thing stopping cell formation has a near-immediate response to the just caused or worsened symptoms. So in doing this you are playing a dangerous game of “refeeding syndrome”. I have had severe damages from copper and boron deficiencies because they were not recognized for 7 or more years.
The one that can kill you if ignored or called “detox” sometimes, to be weathered instead of corrected immediately, is hypokalemia. And the rate of drawing on potassium faster than it can be reloaded to the serum from the tissues can cause hypokalemia, low potassium symptoms. It can happen as high as 4.3 or maybe higher. The things like heart irregularities that low potassium causes are not pegged to the value of a lab test but rather on the ability of your body to supply the amount of potassium when it is needed. It doesn’t wait for “my evening dose”.
The CblC disease review study that recognizes the adult-onset type says plainly that electrolyte instability is usual in either the disease or the treatment of it, and again it is a genetic cause of “starvation” and treating it is refeeding syndrome all over again. It causes all the usual symptoms, hundreds of them until it kills.
I was desperate. I would have been dead of congestive heart disease back likely in 2004 or so. My internist said after a year of seeing me visibly change each 3 weeks that “I have never seen anybody come back from so far over the line.” Something to consider on CHF. The 10 years after diagnosis mortality rate of CHF is 80%. I’m 25 years post-diagnosis and I don’t have congestive heart failure anymore. I lost 85 pounds of water, 50 pounds of fat and restored 50 pounds of previously atrophied muscle in a two-year period after 2–3 years into healing. I weigh under 200 pounds instead of 285 with thigh muscles no thicker than my thumb.
People are used to suffering for decades. For the last 10+ years I woke up every day after 3–5 hours of sleep, lousy sleep, limited by pain, with tears running down my face before I’m awake and wishing I was dead. The reason this whole business even exists in this widespread fashion is because of a lab mistake that won a Nobel prize because the mistake wasn’t discovered for 11 years and then basically ignored in the USA and many other places. And they use folic acid and poison many of our population by putting it in white flour and many other things. Only half the people can use it up to about 800–1000 mcg and they may need 45 mgs of l-methylfolate to heal, determined via titration. Doctors tell us that we are not important, that these things are not serious and not healable. Of course they all read the same bad research so it isn’t the doctors missing it. There is essentially fake news back in the foundation of our present nutritional logic which wreaks havoc with our health. Part of the problem is the “abnormal” have become “normal” in the past 70 years of CyCbl and folic acid-caused chronic deficiencies have made many tests just plain wrong.
Here is a “short” version of the information to do it. It isn’t anything like “take 2 every 4 hours”. Instead it’s a method to recognize deficiencies and correct that which stops making cells where you can see or feel the differences.
Fred Davis’s answer to Has someone used a MeCbl treatment for patients or has been treated with MeCbl? What for and what were the outcomes? (Fred Davis’s answer to Has someone used a MeCbl treatment for patients or has been treated with MeCbl? What for and what were the outcomes?)
After the secondary symptoms from healing or attempting to heal are all cleared up, what remains could be the FMS. My experience now is the old injuries damage, deficiency damage and identifiable cause symptoms is what I have left after healing many of the secondary symptoms. Each batch of different refeeding symptoms can look like relapse except that it usually goes away in a few days as quickly as it returned and unlike FMS or CFS there is no mystery at all about the cause. This whole thing is a result of basically an A-B longitudinal feeding trial of 60 years. 40+ years of trial A with folic acid and CyCbl.
The B branch trial started in 2003 with the direct human active folate and cobalamin s instead of folic acid which compared to methyl folate is like flaxseed oil compared to linoleum, very oxidized and spoiled. The hypothesis of refeeding syndrome is easy to test. I basically was attempting to establish what our health would be like without the Nobel prize for B12 which turned out to be a seriously bad mistake and instead, we have millions of sick people with chronic disease for decades because of these two experiments tried on the USA population. I think it is time to correct the mistake that was never able to validate with matching the results of “protein mystery factor”, like getting new mothers with postpartum depression out of the mental hospital in 3 days and the same with some other disorders. Failing to duplicate the liver extract concentrate with CyCbl was a fatal mistake. Ignoring that failure is a huge failure as the whole logical structure based on folic acid and CyCbl is a failure and makes people sick and corrupt tests.
FMS and CFS and similar things are logical constructs, a syndrome, the same as chronic pain syndrome which is virtually identical to FMS accept that pain is the main nonhealing item. “IT”, a syndrome isn’t there when you take away the symptoms. As when you get to downtown Oakland it is said “There is no ‘there’, there”.
The same is true for “refeeding syndrome”, when you eliminate the symptoms, there is nothing there. It’s a process that happens due to lacks. FMS happens becasue of lack of things, not presence of them. When trying to heal from almost anything, if not successful and secondary symptoms start forming, you are getting it. How fast is a deficiency symptom affected? In minutes to hours if it is THE item’s lack that is stopping a process such as growing a cell.
