Discover the best supplements for Fibromyalgia, including vitamins, minerals, and natural remedies that can help manage symptoms and improve overall well-being.
“After a traumatic experience, the human system of self-preservation seems to go onto permanent alert, as if the danger might return at any moment”, Judith Lewis Herman
In my book almost a decade ago, I wrote about Gulf War syndrome and the similarities between this condition and fibromyalgia. From the terms ‘shell shock’ and ‘Gulf War syndrome’ has emerged the contemporary ‘Post–Traumatic Stress Disorder’ label. We have now landed firmly on the relationship between these three conditions and fibromyalgia.
Years and years of studying and researching the topic of fibromyalgia have convinced me that PTSD and fibromyalgia are the same things. There I’ve said it! And, finally, others are saying it too. What do all those terms share in common? How is it that PTSD and fibromyalgia are twined? Wars, abuse, crises, and trauma of many sorts take their toll on us all, but it is the highly sensitive person whose psyche becomes over-burdened. Here are the ways in which the two conditions match:
Sleep: Insomnia is insidious, silent, and invisible. Worse still are night terrors and dreams that rob peace of mind and wear one down. Not only do physical ailments develop from unrestful sleep, but also emotional problems develop. Things that seem bearable somewhat during the day become unbearable in the dark. Sleep deprivation and other disturbances are common.
Anxiety: Often gripped with the feeling of dread but cannot tell why. There is a constant merry-go-round of fearful thoughts in the brain. Looking constantly for anticipated trouble. A neurotic terror of the unknown is a frequent companion. The world is seen in black and white. The anxiety levels rise to panic. Change is not well tolerated.
Lack of contentment: Achieving even little contentment and peace is a struggle. Living in the moment is difficult as there is the anticipation of the possibility that danger lurks around the corner. Living with tension and fear of the future while remembering the past is common.
Lack of resilience: Easily startled, frightened even when not in a dangerous situation. Flashbacks in terms of smells, sights, and sounds from shocking, scary, or crises once experienced. Negative thoughts about oneself result in being hard on self and mired in depressive thoughts.
Along with these emotional reactions, there are the physical ailments that accompany the emotional ones. Pain, fatigue, abdominal upsets, lack of energy, sensitivity to sounds, smells, frightening sights, uncontrollable itching, tingling of limbs, and a myriad of other symptoms are what PTSD and fibromyalgia have in common to a lesser or higher degree.
Each person is unique and may or may not share all of these emotional and physical symptoms but the similarities can no longer go unheeded.
“If there is nostruggle, there is no progress” , Frederick Douglass
There is a tendency among those of us with chronic pain to be ever so watchful on days we are in pain or extremely fatigued. We take it easy on those days and begin to wonder if we will ever be feeling well again. But, oh! On those days when we are feeling well, our tendency is to be optimistic, think we are cured, and immediately do more than we should. We then pay for it with a big flare-up. It is usually one step forward, one step backward. The struggle continues. Sound familiar?
How do we train ourselves to pace? What is that high all about when we feel as though we can overtake this burden? How do we make sense of feeling great one day and lousy the next? What is it about us that cannot seem to predict what will bring on a flare–up if we overdo it on a good day? Ah, I think it is because we remember what it once felt like and that part of the brain becomes excited remembering BEFORE fibromyalgia. We want more of it; we deceive ourselves that we can go beyond the limits of yesterday when we did not feel so great. It is a series of ups and downs. We refuse to listen to warnings that one cannot be almost bedridden one day and up for a hike the next. Our brains deceive us; we become weary of thinking of ourselves as ‘pain people’. We crave normality. We want to go to that family gathering that inevitably overstimulates us. We want to take an hour walk instead of a 15-minute one because the day is so nice, filled with sunshine. The sky is the limit on what we can do on that magical day. Then the sky falls down and we are once again down and out the next day or the day after that. Our brains have not yet recognized that if we continually fail at some task, repeating it will mean we get the same results!
There is though some hope if we understand the ways in which the brain has the ability to create new neural pathways or change existing ones. ‘Cognitive Therapy’ which focuses on teaching a radical shift to our thoughts and feelings, showing how to live each moment with more awareness, is an evidence-based program that can help with the tendency to overdo! In the meantime “Keep calm and carry on” as the old second WW saying goes! Calm is a balm for fibromyalgia!
“America is one of the few advanced nations that allow direct advertising of prescription drugs, Robert Reich
BigPharma makes huge profits from those of us suffering from chronic pain, fatigue, depression, anxiety, itching, and digestive issues- to name a few of the common symptoms of fibromyalgia. Every day we are inundated with advertisements about prescription drugs that would alleviate these symptoms. Equally as rich is the vitamin industry which advocates specific supplements for the treatment of fibromyalgia, a few of which are science-based. Generally, we take them willy-nilly without any idea if they are helpful or not.
There is hope with a slow movement to de-prescribe medications, which is especially relevant for those of us with several painful and chronic conditions. However, for those of us living with fibromyalgia, we are used to not being listened to by health care providers. Many would prefer to prescribe a ‘pill’ (or several pills) to help with our ailments in spite of the fact that we are often over-medicated and highly sensitive to medications. Dr. Jaye Cohen advocates “go low, go slow”, and I am a big advocate of that philosophy. Taking medications on a daily basis when they are necessary for life-saving measures is crucial, but even then, what if the quality of life is compromised? What if, like in the case of fibromyalgia, the condition is not life-threatening? The answers to these questions are ones we have to grapple with constantly as we are the final decision-makers. Many of us have sometimes two or three serious health conditions and the medications for each conflict with one another in spite of the goodwill of pharmacists checking on their interactions. The experiences of people with fibromyalgia are unique and even more so among the community of fibro sufferers. One size does not fit all.
A review of the hundreds of comments I have posted over the years could be a rich source of data. I can attest to the vast amount of anecdotal accounts of medications prescribed that have resulted in what can be deemed over-prescribing and a prescribing cascade. The latter is when a new medication is prescribed to counteract the bad effects of another drug. Fibromyalgia is not a disease, but a dis-ease of the central nervous system. Medications have been found to have only limited positive results. Lyrica and Gabapentin are heralded as the medication for fibromyalgia. The TV ads are plentiful and daily about Lyrica. I have taken both in the past, but the serious weight gain has been a side effect and I found that I needed to constantly increase the dosage for the medication to have any results, often with more side effects. But, we are a desperate and frustrated group of people. We are willing to try most anything, hoping for relief. For some the above-mentioned drugs are beneficial; for many, not many works. The above picture is what I had been taking every day, some more than once a day. I worry about the impact on my liver and kidneys. I have decided to come off Gabapentin and in fact, there is not much change to my pain level. Hopefully, it will help with my weight issue. As far as my heart medications I adhere to those prescriptions since to this point in science they are, for the most part, evidence-based. While I worry constantly about a statin, I am searching for one that does not have side effects like the one prescribed for me in the hospital. But as far as fibromyalgia medications there are none that are effective for me, even though I thought for a time that Gabapentin was doing the job! Now, in hindsight, I believe that for me it was the placebo effect. Many though have found it to be helpful and I don’t want to discount their positive experiences.
The books warning of the dangers of polypharmacyare plentiful and many of us want to take control of the chemicals we are taking into our bodies.
But these cascading effects result in multiple prescriptions– one for anxiety, another for sleep, one for depression, another for pain, while still another for digestive complaints, and so on. Please read some of the older blogs’ comments ( there are 110 blogs!) and you will probably be aghast, like me, about the ways in which we have abused our bodies with these chemicals. Do not misunderstand me- many prescriptions are absolutely necessary as life-saving measures, but those for fibromyalgia are not. I am not blaming the victim. We do what we have to do to find relief.
I have tried it all, homeopathy (which has been shown to be merely water!), acupuncture, herbs, vitamins, supplements- I believe I have partaken of all of the alternative/complementary therapies. None have worked. Much money was spent, time wasted, hopes dashed. What is to be done? We must be advocates of our own health, pay attention to science-based prescriptions, watch for side effects, and concentrate on other nonmedicinal or supplemental remedies such as light exercise, watching our diet, mindfulness meditation practice, and avoiding stress. In the end, there is not much else we can do other than train our brains (read: central nervous system) and stop thinking we have a disease, but rather a dis-ease. I have heart disease. I have fibromyalgia which is a dis-ease. There is a big difference, but both of which cause worry, pain, and multiple symptoms, oftentimes I cannot differentiate between the two, which is very frustrating. Many of you dear readers have other chronic conditions alongside fibromyalgia. It isn’t easy living with them all. But, I do have a lighthearted quote I will enjoy sharing with you:
“I believe gelato is meant to be treated as medicine and taken daily as a prescription”, Betty Brandt.
The following birthday card may be somewhat funny, but there is a sad element of truth in it:
” Most of us have unhealthy thoughts and emotions that have either developed as a result of trauma or hardships in their childhood, or the way they were raised”, Steven Seagal
It would seem that those of us with fibromyalgia have developed the condition at an early age which may have taken a tremendous shock, accident, or crisis to bring about full-blown fibromyalgia. Some of us have had repeated crises in our sensitive lives and did not even experience a single unusual occurrence of the syndrome developing. Nonetheless, we are a group of people with specific personality traits that allow us to dwell on trauma that seems to be stuck in our minds/brains reactivating the experience more frequently than is healthy. So, how in fact can we find ways to train the brain to refocus away from past trauma? The work of Dr. Richie Davidson, neuroscientist, has presented us with the interesting option of “spending as little as 30 minutes per day training our minds to do something different” (p.52 Mindful August 214) which can result in changing the brain. To that end, I had decided that quilting was not the answer as I had previously tried that and not had much success (see blog Fibromyalgia and Multitasking, May 17, 2009). Instead, I would try my hand at writing about personal issues.
I have begun to write short stories about my life, exploring the reasons why I am the way I am, an anxiety-riddled person with a tendency to overreact to any kind of stimulation which then begins the vicious cycle of pain and fatigue flare-ups. Writing these 2 or 3 pages about events in my life, for example, about my first day of school, often brings about unhappy memories. So, I have been training my mind to do something different, but in fact, it is not exactly a healthy endeavor. Or is it? The two friends with whom I shared this first day of school story had different responses to it. Each is valid. One friend suggested it was a good practice, then after I had written bad stories, I should print, tear up and discard them forever. The other friend reminded me that I have written before about reactivating the amygdala to relive a bad experience, and writing about past trauma was not a good idea.
Ah, but back to Mindfulness– living in the moment- not the past nor the future, but the here and now. That is, after all, the idea that whether I am eating a meal, driving the car, or being with friends I am just being without judgment- I am conscious of the actual moment, not reliving past negative events. I have to train my mind to do something different that is pleasing and not anxiety-provoking. It should also be repetitive and creative. Hmmm, whatever shall it be?
My 16 years of experience facing Fibromyalgia and 30 years of CFS
Pain medications taken too often can lead to a pain cycle, where every time you take an analgesic, the pain will come back sooner and stronger. Once you are there, you have to stop all painkillers completely. I just had my cycle restarted by a week in the hospital where they gave me Tylenol every 6 hours. That’s a whole bottle of Tylenol in a week, and it was completely unnecessary. Now I am suffering the consequences.
People with Fibromyalgia find relief with gentle exercise. If you have CFS with your Fibro, that’s a different story. But for “just” Fibro, go for low-impact activities. Swimming/aquafit is the best thing you can do for your body if you have any sort of joint, muscle, or soft tissue problems.
Fibromyalgia has a flare/remission pattern like many autoimmune diseases (although it is technically not one….yet), so when you are flared, do as little as possible. Don’t be afraid to ask people for help or even get community nurses to come to help you through the worst of it.
Other things that help:
Remove all toxic people from your life – also from social media
Reduce stress as much as humanly possible (I stopped watching the news long ago – especially political)
Don’t push yourself. If your body says it’s done, respect that and go lie down
You have a certain amount of energy each day. Plan accordingly by spreading your errands and chores out.
Don’t be afraid to nap. Our bodies heal when we sleep.
Get a TENS machine for those stubborn muscles in your shoulders. Just make sure to keep it on low, no matter how good it feels at the time. If you crank it up, your body will ding you for it the next day
Try not to rely on sugar or caffeine too much. These cause spikes and crashes in your energy levels, which actually reduce the amount of energy you can spend in a day. It’s hard though.
Do your research. Read scientific medical studies, research medications. Use logic. Avoid any website that uses the terms “leaky gut” or “homeopathic“, or claims to be able to cure Fibromyalgia. It is not cureable. It can, however, be sent into remission, where your symptoms will be minimal. This is done through stress and energy management.
Work with your doctor. There are many non-painkiller medications that can help, although most doctors wouldn’t think to use them for Fibro.
When I had a bad flare a year and a half ago, I asked my doctor about something to turn my immune system down, so I wouldn’t be so reactive (I have an undiagnosed autoimmune/autoinflammatory condition as well, which has caused a lot of allergies on top of the Fibro / CFS).
This question made her remember something from another patient. As a result, I got prescribed Doxepin, which suppresses the immune system and is also the strongest antihistamine known (bonus). I haven’t had a serious Fibro flare since I went on it. Everyone’s Fibro is different so this may or may not work for you. But it is always worth asking.
Someone suggested CoEnzyme Q10 which has helped a lot with my pain. It doesn’t help everyone. Other supplements are similar.
You need to find what works for you, but please do not take any supplements without speaking to your doctor first. They can screw you up as easily as they can help. Your doctor will probably want to monitor your bloodwork to make sure you don’t develop any imbalances due to supplements, and some of them may not be suitable for your particular form of Fibro.
As a Nurse Practitioner, patients presenting with chronic pain problems to the ER are problematic. During this so-called opioid epidemic, guidelines were put in place for patients seeking narcotics. Also urgent care facilities. It is a problem, and I’m not implying patients are not in pain, or simply drug seekers.
We do use Toradol. Unfortunately, patients with chronic pain problems should be receiving care from their primary care physician or pain clinic. I can’t provide a percentage, but we were inundated! I’m a chronic pain patient myself, and the ER’s were being utilized when patients ran out of opiate meds, the physicians working in them were concerned about their license and DEA #’s being sanctioned.
Some states have placed a limit on the number of days supply that can be provided. Hopefully, the new guidelines will be clarified that was written in June 2021, on how much should be dispensed. Usually, a 2–3 day supply was provided til patients could see their primary or pain, clinic doctor.
Even with the prescription drug monitoring system in place, doctors were concerned about “Big Brother” looking over their shoulder as they wrote a prescription. This period of time has been hell for chronic pain patients, and I can vouch for it. It’s out of control at this time. My supervising physician has to follow the hospital guidelines.
TRUST ME I have no problem giving a 3 day supply, back in 2016. I understand your and other patients‘ pain problems, but the ER is for emergencies, life or limb at risk, and CHRONIC problems need to be managed in other ways. I don’t want to be perceived as an uncaring, jerk, or 4 letter word, but our hands are tied. I could keep writing, but it’s a problem that hopefully will be resolved soon.
If you visit chronicillness.co, Pain, you will read the same information as I’ve written. Yes, patients are committing many unwanted things, buying meds off the internet chancing your life they may contain a fatal dose of Fentanyl. The guidelines should be published soon, to ease restrictions.
I CAN’T WAIT, as my Morphine was cut from 150mg. to 90 mg. and just because I’m in the medical field, do not receive additional amounts. My life has declined and hard to function. Was working 50 hours a week, but for almost 2 years, zero hours. Take MS Contin 30mg 1 hour before getting out of bed! I’m not alone.
May God give you strength, as he has to me, making me take my Glock out of my mouth. No joke.
Having an understanding family has been wonderful. My husband and son understand when I having a bad day and pitch in without hesitation. Find those people who understand and support you. But it is also important to remain positive and do the things you can and not allow your chronic illness to define you.
Seek God through prayer, His Word and the counsel of others. Finding meaning and purpose in your life is critical for your spiritual and emotional health. In prayer, ask God to reveal His purpose for this season of your life. Invite others’ input and don’t be afraid to step out and try new things. Have you always wanted to take an art class? Write a book? Now might be the perfect time to start.
Ask important questions like, “What am I passionate about?” “What in my life can I share with others?” We sometimes abandon our “passions” for adult responsibilities. Think back to your youth and what you enjoyed doing. Rediscover your gifts and talents. Although your chronic illness may keep you from coaching your son’s soccer team, maybe you can use your photography skills to capture those winning moments. Be creative.
Take calculated risks. Rebuilding your life requires that you explore unchartered territory. Sure, it might be scary to head back to college at age 35, but why not give it a shot? While you may not succeed at everything you try, the experiences will enrich your life and give you something to talk about besides your illness.
Eliminate toxic relationships from your life. Few things are more draining than dysfunctional relationships. People who consistently blame you for their problems, criticize your choices and discount your feelings are toxic. If being in someone’s company continually drains you, it might be a sign of an unhealthy relationship. Learn to establish healthy boundaries.
Forgive those who fail you.Over time, your friends will fail you, co-workers will fail you—even your church will fail you. Forgive them and move on.
Learn to choose between “best” and “good.” Your physical and emotional resources will limit your choices. Determine who and what adds meaning to your life and invest in those relationships and activities. Not sure? Ask a friend. A fresh perspective may be just what you need.
Share your gifts and talents. Those who suffer have a lot to contribute. It is critical to look for ways to share your gifts and talents with others in your church and the community.
I started with 200 mg once a day. I increased it every other day until I got relief which for me was until I reached the maximum dose of 1600 mg every 24° period (i take 400 mg every 6°). Do not take if you are on an antidepressant without consulting your doctor. Also, avoid if you use sr. John’s wort.
It does much the same thing as SAM-e so don’t take it & SAM-e together without a doctor’s ok. Either or should apply to these 2 supplements. MSM comes in a variety of strengths. The maxi has seen recommended is 1000 mg every 8 hours. No more. I started at the lowest dose once a day, & increased gradually every 48° until I got relief. Again, avoid if you’re using st. John’s wort.
The warnings on these supplements above are because, to a lesser extent, they stimulate serotonin production. It’s very mild, but things like this add up. Often, a pharmacist will know more about them than a doctor, esp. if your doctor doesn’t hold with supplements.
Another Rx pain med that slightly increases the availability of serotonin in the body is Tramadol (Ultram). If you are ever given an Rx for this, make sure the doctor is aware if you are using any or all of those 3 medicines (SAM-e, MSM, & St. John’s Wort). The issue between MSM & SAM-e is also that they work by increasing the availability of sulfur in the body, but too high levels of sulfur are as bad. It may be worse than too low levels.
I have also found Boswellia Serrata to be of some help. 600 mg twice a day is the recommended max dose. It mostly helps with joint pain, which is common in fibro patients (I should know, I’ve had it since 1984).
When we were living in Scotland, a woman who owned a natural food store recommended nettle tea for joint pain. I found it quite helpful. I was very surprised to discover few people in the US thought it was used for joint pain; many here in the US use it only for respiratory illnesses, including COPD, & had no idea it was used for joint pain. I have used it when I had a respiratory illness, & found it helpful for both.
Also, these days, you can purchase 4% lidocaine topical lotion to rub into sore joints. Make sure you don’t strip the skin of its natural oils as that’s the medium through which it absorbs into the skin.
Another thing recommended is DMSO. You’ll usually find it in the veterinary section if you want the cheapest prices, & in states that don’t allow its sale for human use, you won’t see anything but veterinary formulations in any online store. It’s a very common chemical byproduct & nontoxic.
Don’t get a 99% solution, get something diluted & in gel form…. I’ve tried both & diluted 8n gel is more effective. The main issue is it can, for those with sensitive noses, smell like raw garlic…& it can leave a taste of garlic in your mouth – even though there is no common chemical I am aware of that DMSO shares with garlic. I find garlic difficult to deal with in food.
I am very sensitive & large amounts are a huge turn-off to me. If I want to stop myself from eating too much, that’s a heck of an appetite suppressant for me. It’s also not cool with cereal at breakfast…the taste of, say, honey nut Cheerios & garlic just so does not work…but I found it helped with sore joints regardless of the taste.
I have recently found a formulation where DMSO is listed as an inert ingredient, the main ingredients being menthol & camphor…so you smell like linament on a horse or Ben-Gay on an older person. The DMSO can’t be anything but a base ingredient in some areas…areas though have yet to see any mention of its harming anyone. Anyway, it helps but doesn’t take away all the pain. Nothing does.
As for antidepressants, pain & depression share many of the same pathways in the body, so antidepressants are used, with varying degrees of success, to help with the pain.
You must realize that this war on opioids & the false blame opioids receive for the overdose crisis means that we may all, if we’re on pain medication, be forced off it…& those newly diagnosed with pain syndromes like fibromyalgia may never see an Rx for pain medication.
I’ve seen tweets by people who have had major surgeries & their post-OP pain. Options are things like one, maybe 2, acetaminophen, extra strength (500 mg a pill), every 8 hours with 400 mg of ibuprofen every 6 hours for pain unrelieved by acetaminophen.
Most hospitals are so afraid of the DEA raiding them that they won’t prescribe opioids at all for any reason whatsoever. The VA has pulled all veterans off opioids altogether, resulting in a rash of suicides due to being unable to live with severe pain from war injuries.
I include in this WWII vets who had things like shrapnel buried in areas that precluded the removal of the shrapnel because of the risk of paralysis or even death. This is a jagged foreign object in the body, always tearing at something inside, often close to the spine or a major organ.
Many have been on opioids for decades with no, only a few, increases in dosage over that extensive time frame. What a way to reduce the number of VA patients! What a way to say thanks to the men who were sent from farms & small towns all over the US to make sure the menace of the Axis countries never reached our shores!
Many of these were called back up to active duty in Korea in the early 1950s, to yet another war. What a way to perpetuate the wrongs done to our Vietnam veterans, sent by conscription to fight an unpopular war & blamed for joining an army they didn’t ask to join but were forced to join.
If you want me to write more about this I can continue…
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.
