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.
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.
Fibromyalgia did NOT ruin my life, but when I tell you what it has cost me thus far, you will think I’m mistaken.
I can no longer exercise in the ways I like, no rollerblading, no horseback riding, no running,
I can no longer make a date with friends and promise to be there. Fibro makes it hard to plan ahead.
I can’t go for long car rides or road trips because I can’t sit in one position for too long.
I have to take meds for pain but they only work on the pain NOT related to the Fibro, so I’m still in pain.
And the worst thing of all, after being able to proudly say that I am a nurse, I can no longer legally say it. I went on full disability in 2015 because just remembering a doctor’s order was impossible, or a diagnosis, or a name!
Maybe it’s an inner me, I really don’t know, I just try not to dwell on the bad stuff, and keep looking for the good. There is a TON of good out there!
I CAN NOT let something RUIN my life, not something like Fibromyalgia.
It’s hard to address them all at once. I’ll just mention that your issue with panic attacks is probably both psychological as well as physiological. From your wording, it sounds as though you experienced anticipatory anxiety about having a panic attack which then operates in a self-fulfilling prophecy fashion to trigger a panic attack.
So there’s an initial cognitive element, which then produces a physiological result. That’s pretty common but also points to the fact that at the very least, you’ll need to use a two-pronged approach to resolving your issues with panic: your psychological tendency to talk to yourself in catastrophic terms (i.e. “it would be awful, terrible and unbearable for me to have a panic attack this morning.
The fact that I have them must mean there’s something seriously wrong with me; I must be defective and so not measure up to the other people out there who don’t have my problem”) and also the physiological effects of tensing up in reaction to what you’re telling yourself and so beginning to hyperventilate as well as release adrenalin into your system.
As far as dealing with the cognitive or psychological side of your problem, you would be best serving yourself if you can begin to challenge your catastrophic thinking: i.e. “where’s the evidence that having a panic attack this morning is truly awful and horrible and not simply an uncomfortable, inconvenient pain in the ass? Where’s the evidence I can’t bear to have another panic attack?
I’ve had them multiple times before and I’m still here. While there’s evidence I don’t like panic attacks, there’s no evidence I can’t bear them. I can, even if I’m strongly uncomfortable having them. Where’s the evidence there’s something truly wrong with me compared to other people? Do I fully know the lives of other people to be able to make that kind of comparison?
Am I saying I’m the only person to have this problem or that others who share this problem with me are somehow inferior to other people who don’t have this problem? Where’s the proof for this assertion? And if other people, say my best friend, isn’t inferior because of her problems, why do I claim I am?”
Things like this.
Challenging your catastrophic thinking, whatever it is, will begin to help you calm down, decrease your physiological reactions and begin to move you out of the fight-or-flight response which is a trigger for many panic attacks.
In going about this cognitive house cleaning, I’d recommend you find a local therapist skilled in rational-emotive-behavioral therapy, otherwise known as REBT. You can also begin to work on this yourself, with the help of books such as “Overcoming Destructive Beliefs, Feelings and Behaviors” by Albert Ellis, the founder of REBT, or another of his many books, such as “How to Stubbornly Refuse to Make Yourself Miserable About Anything. Yes, Anything!”
On the physiological side of things, apart from your thyroid condition (Hashimoto’s or hypothyroidism?), much of what you’re describing you’re going through is made significantly worse by chronic muscle tension and breathing faster than your body actually requires. This is a common problem with most people in our hectic, stress-filled society (and depending on your students, with being a high school teacher).
Here’s a copy of what I wrote in an earlier post. For more details, I recommend the books “Breathe to Heal,” by Sasha Yakoleva as well as the “Buteyko Breathing Course Manual” by Dr. Eduard Reuvers.
Before I retired as a psychotherapist and counselor in various hospital and university settings, I treated hundreds of people with panic disorder, with I’d say roughly a 90%+ success rate among those who actually followed my suggestions.
On the physiological side: panic attacks are the “little brother” or the “little sister” of asthma attacks. They’re caused by what’s called “subclinical hyperventilation,” which is a fancy way of saying they’re caused by the person unconsciously breathing faster than what his or her body requires.
Here’s how you tell where you’re at in this: breathe normally for a while as you always do and when you’re ready, exhale normally (don’t try to “empty your lungs”) and as soon as you’re done exhaling, hold your breath exhaled while timing yourself.
You’ll feel an initial bump of discomfort and then that discomfort will plateau for a while, then all of a sudden your discomfort will start to rise very quickly. As soon as you feel your discomfort starting to take off after that plateau period, inhale normally and note how long you were comfortably able to hold your breath exhaled.
To put your Diagnostic Pause in context, let’s say you ended up with a Diagnostic Pause of 15 seconds. That’s 1/4 the optimal time. That tells you that you’re unconsciously breathing four times faster than what your body requires; more than that when you’re stressed. Can you now understand why your body is sensitized towards panic attacks?
This is normal in our stressed society. As we live our stressful lives day after day, the inner part of our brain adjusts its resting breath setting, if you will, to accommodate that more stressful lifestyle. It’s similar to setting the idle speed on a car’s engine to a much higher RPM than what the default factory setting is.
Your job, once you find this out, is to now recalibrate your body’s breathing rate back down to its original default setting. Over time, as you slow down your breathing, your brain will reset itself back to its original breath rate.
Now that you know what I like to call your Diagnostic Pause (and others call the Control Pause), to begin to resolve the physiological side of your panic attacks, begin to now practice holding your breath exhaled for about two seconds longer than your Diagnostic Pause.
So if your diagnostic pause was ten seconds, for instance, now practice holding your breath for twelve seconds, slightly uncomfortable but not too much. This is now your Training Pause.
Do this three to five times a session, three to five sessions a day.
When you’re completely comfortable holding your breath for twelve seconds, increase your Training Pause to fourteen seconds, then sixteen, and so on. Make sure you don’t push yourself here.
Pushing yourself beyond a mild discomfort can result in reactively hyperventilating when you stop and might even precipitate a panic attack.
Not good.
Typically, it takes a person two to three weeks to go from their initial Diagnostic Pause up to being able to comfortably hold their breath exhaled for 30 seconds. At the 30 second point you’ll be functionally “immune” to panic attacks except for times when you’re overly stressed, over-tired or on the verge of getting sick.
It takes the average person about a year to progress from being able to comfortably hold his or her breath exhaled for thirty seconds to being able to comfortably hold his or her breath exhaled for sixty seconds, the optimal time. Some people work to hold their breath exhaled for as long as a minute twenty seconds but this is not really necessary.
While holding your breath exhaled, you’ll probably notice strands of muscle tension in the sides of your chest and in your cheeks. If you can consciously relax those muscles, you’ll speed up your progress while also learning how you’ve unconsciously held muscle tension in your body all these years.
Going back to the psychological side of the equation, a person suffering from panic attacks also has to learn how not to make everyday problems into catastrophes. Catastrophic thinking forms a direct link to subclinical hyperventilation and panic attacks.
One thing most people suffering from panic attacks do is engage in what I call Negative Possibility Thinking. The reason to themselves in 1,001 different ways “It’s possible I could die of a heart attack at 5PM today”; “It’s entirely possible I could be horribly injured and then die in a car crash this afternoon”;
“If I do badly on this upcoming test, it’s possible that might mean I’ll do badly on all my future tests, fail my class, get kicked out of school, not be able to get a job, and end up cold and hungry, shaking a tin cup in an alley for change”; “It’s possible that right now, Putin could be drunk, staggering around in the Kremlin and push the button today, killing us all in a nuclear blast by dinnertime.”
The problem with Negative Possibility Thinking is that you can’t disprove any of these thoughts outright: all of these things are indeed possible. You can’t say to yourself that they’re impossible.
What you can do to deal with your version of negative possibility thinking is to confront it with what I call Probability Thinking: “While it’s possible I could die of a heart attack at 5 PM today, probably I won’t”; “While it’s entirely possible I could be horribly injured and then die in a car crash today, probably I’ll be just fine”; “while it’s possible I could do poorly on this upcoming test, get kicked out of college, fail to ever get a job and end up on the poor side of town begging for money to keep myself alive.
Probably I’ll do all right on this test (although maybe not perfectly), stay in school, end up with a reasonably good job and not end up unemployable and poor—especially if I continue to study diligently and work to correct whatever errors I make”; “while it’s possible Putin is drunk right now and about to hit the button, probably he’s not.”
Keep in mind that only trying to resolve your issues with panic attacks by working on the psychological side of it alone won’t be as effective as also working on resolving your tendency to over-breathe—and working on your breath alone generally won’t resolve your tendency to think catastrophically about events or engage in negative probability thinking. The two approaches work the best hand in hand.”
I realize that Fibromyalgia doesn’t affect everyone the same way. I don’t think I suffer as much as some people do.
Having said that, there are things that I have done that make it better. When I was first diagnosed in 1987, I started exercising, at the gym and walking. It took care of almost all my pain. 12 or so years later, the chronic fatigue kicked in and everything got worse. I took naproxen, mostly. It was all I could do to do my job and get home.
Now since I’ve retired, I thought things would get better without job stress, but not! It’s kind of worse. More and more naproxen. When tramadol became available, I used it sparingly. If I took 50 mg before bed, I slept well and the next morning I felt that it reset my brain, somehow, and I felt pretty good for a while until it got worse again.
When I first heard of CBD oil about 4 years ago, I started taking it and it really helped a lot. It helps with sleep problems, but not enough. A couple of years ago I got some street cannabis edibles, and it worked so well that I knew I had to do some research.
Last year when medical marijuana became legal in my state, I researched different strains and found ones that worked better. When you buy edibles, you don’t always know which strain is in the product. Therefore, I always buy a 1/8 package of “flowers” and make my own special chocolate.
I only take it an hour or so before bed. I get a really good night’s sleep, wake up refreshed, have no side effects, and have more energy. I keep tramadol around for really bad days, mostly caused by changes in weather. I found that less cannabis is more, and have no interest in getting high. One flower lasts me a couple of months.
Bottom line — if you can exercise, do it, but don’t overdo it. Work with CBD oil, tramadol, naproxen, and medical cannabis if it’s available to you. Try not to get stressed, if you can.
Good luck!
Just a little update here to clear something up ….. I don’t take naproxen regularly, now. It’s already given me heartburn and GERD issues. The only things I currently take every day are CBD oil and cannabis, with tramadol and naproxen as needed.
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.
Oh boy, what a question and you got the right person to ask, if you research and I don’t mean just google. I mean research the medications you take. You will find most if not all have side effects and one of them is weight gain and fatigue. Some also deplete vitamins so ask your doctors for information.
If you suffer from Fibromyalgia pain/Chronic pain, it is difficult to move. If you also have any kind of arthritis this only makes it more of an extreme problem to exercise. It’s possible to drop some weight when changing eating habits and or removing chemicals and toxins which are in many foods.
In order to have the ability to drop some weight, exercise is needed. With Fibromyalgia movement is very painful and it feels like your body is broken. Start off slow and do simple exercises targeting certain areas. It won’t be easy but you learn as go what can work for you. I believe anything is possible if we try.
Made changes in my lifestyle and especially my eating habits. I didn’t eat a lot but I didn’t eat healthy at all. So I needed to make serious changes.
Here are some of my results
Two years of good health and still learning how to live again. Then one day I began to feel like I was going backward with my health. I ignored it but it was happening so fast the more I ignored it the worse it was getting. Whatever it was it was beyond my control and deeper than I could see. I returned to doctors stating my issues.
Pain in my hip
Pain in my thigh
Pain in my stomach
Pain in my back
I stated it was not the normal pain I felt due to fibro or lupus. I went back every month for six months with the same issues getting worse and they sent me to other doctors.
On that final visit, they told me I needed to take medications for my diabetes and cholesterol, I was at risk of a stroke. I went home that day and admitted failure to myself. I was in too much pain to exercise/move for an outcome of weight loss. Deciding I would do the weight loss surgery. I found a surgeon and made an appointment the next day. Here’s when things go left.
The surgeon within seconds diagnoses me with an umbilical hernia. What do you mean I have a hernia, I just had a physical a few months ago. I told him based on what he was telling me, I had a change in my belly button when I had my son fourteen years ago.
I then asked for a scan or something that could see what was going on in my stomach. He denied me, so I was to wait 3–6 months more, and at the point of him doing surgery is when I would find out what was going on. Four surgeons later I finally found one who agreed to ct scan.
I had four hernias all encased in sacs of fat and the umbilical hernia was trapped which is not good. My core which holds your organs in place and gives you balance was shredded. So a double diastasis Recti procedure was needed as well. Which is reconstructing the core.
The pains I was having were due to their hernias and their locations of them. Once I healed from surgery I addressed what I knew to be the only other health issues within me.
A few months after surgery I sort care from a new primary doctor. After running multiple tests it was discovered my pancreas was not pushing out insulin as needed so my levels were high due to this issue. If you have an insulin issue no matter what you do, weight loss will not happen. Once the issue is addressed and medication begins, including dietary changes with exercise. This is when you will see a change.
I DID NOT HAVE FIBROMYALGIA, I experienced long-term extreme overall pain due to four hernias in my body for a long period of time. Since my surgery my pain excluding surgery healing. I have not experienced fibromyalgia or signs of it.
What I can say is this, my pancreas was not pushing out insulin as it should. I need medication which I did not want to go this route. I take injections once a week now on my second pen and 8th injection. I feel no difference better or worse but some slight pain or discomfort in my thighs.
Pay attention to your body, your face will tell your story. If you can not move around due to fibro pain it will be very difficult to drop the weight. Is it weight or inflammation? You can make changes to the type of foods you eat. Cut-out white foods and sugars make a huge difference.
