Explore the medications commonly used to treat Fibromyalgia, including pain relievers, antidepressants, and other options to manage symptoms effectively.
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…
You know this is the craziest thing I am going to talk about now…
I’m not sure what the percentage is, but I can tell you that I spent years taking Adderall for ADHD and then had to stop taking it when I got pregnant. During the hiatus from that medication, I was diagnosed with fibromyalgia.
After unsuccessful attempts at treating it with many of the same methods you mentioned, I decided that I was sick of being a test monkey and asked my doctor to put me back on the Adderall. This time around, not only did it manage my ADHD symptoms, but it also seemingly “cured” my fibro.
Being a stimulant medication, its purpose is to counteract the area of an ADHD patient’s brain that makes them feel restless and unfocused by “tricking” the brain into believing it has produced too much of its own stimulant, therefore making it produce the chemicals that calm.
While it still does this for me, it also cleared up the brain fog and mental sluggishness that accompanies fibro, but the best thing it’s done is make the pain tolerable so I can normally physically function. As you certainly know, with fibro, some days are worse than others, and it’s not as though this medication blocks the pain as an opiate does, rather, it keeps me so focused on the task at hand that it also distracts me from the pain.
Upon realizing this, I started doing things to help further lessen the background pain, such as yoga and taking daily vitamin B12 and folic acid supplements, as they support nerve health.
Adderall is not recognized as a pain management drug, and only a small handful of doctors currently acknowledge it as a treatment for fibromyalgia. It is a controlled substance with a high potential for abuse, so, doctors won’t prescribe it without a perfectly valid reason, and they usually require a clear EKG prior to prescribing because the stimulant property is sometimes hard on the heart muscle.
BUT, Adderall IS recognized as a treatment for chronic fatigue, so, if you approach your doctor after having utilized so many other medications unsuccessfully and specifically address the concern that the fatigue which accompanies your fibro is debilitating in nature, and you propose the idea of trying a stimulant, he or she may agree to prescribe it at a low dose on a trial run.
Be prepared, however, as it is a common practice for doctors to perform drug tests before and during treatment with a controlled substance to ensure a patient is not abusing it or any other drugs.
I’m certain this is a treatment that will not be appropriate for every person with fibro or other chronic pain disorders, but it has worked in this way for me and a decent handful of other people in our shoes. That being said, for how significantly my quality of life has improved, I firmly believe that it is a treatment that deserves consideration by doctors and sufferers alike.
Yes. The underlying disease process causing the symptoms known as “Fibromyalgia” can include an increase in anti-cardiolipin antibodies known to increase the risk of clotting and thus miscarriages.
For more information, Regarding “Chronic Fatigue Syndrome”, “Fibromyalgia”, “Chronic Lyme” & other chronic diseases in which the patient is frequently told by their doctors that; “you look fine, I can’t find anything wrong with you despite all of the labs that I’ve run”.
Chronic Inflammatory Response Syndrome (CIRS) refers to an immune system malfunction in which the immune system essentially has a broken “off” switch. Up to half of the general population appears to be genetically susceptible (shoulda’ picked better parents) to this disorder.
“Genes load the gun, exposure pulls the trigger”, what does “exposure” mean? It can be one of many things–anything that promotes a pro-inflammatory cytokine “storm” including sepsis, Covid, mold-related illness, and other issues. Mycotoxins, poisons secreted into the local environment by certain molds/fungi, Lyme Disease, Pfiesteria, Ciguatoxin, even exposure to certain vaccines such as the Lyme & Gardisil vaccine can create the surge of inflammatory cytokines that trigger the onset of the illness.
The International Society of Environmentally Acquired Illness is a professional organization of practitioners experienced in treating this illness. Few physicians even recognize this illness other than calling it by the above names, much less have the awareness that it can be treated and reversed or the fact that while causing great suffering, it also frequently shortens lifespan.
If this doesn’t work, get a good medical evaluation
Lyme Disease, I am embarrassed to say that many of my colleagues “don’t believe” in certain diseases such as “Fibromyalgia” & “Chronic Lyme Disease” as if this was a theological or philosophical debate.
It’s not, It’s “applied biology”, AKA “Medicine” just as “applied physics” is called “Engineering”.
Sir. William Osler MD once said that “to know Syphilis is to know medicine” because syphilis (a disease that is caused by a spirochete–same family as Borrelia that causes Lyme) can affect so many different organ systems, causing great suffering and shortening lifespan with many types of clinical manifestations/malfunctions of virtually every organ system.
The fact that with both diseases there’s a long “latent” (asymptomatic/relatively asymptomatic, or with such a bizarre assortment of intermittent, nonconstant symptoms) doesn’t help.
Add to that the fact that most current lab technology has a false negative rate greater than 50% (over half of the folks with the disease test negative–as if they don’t have the disease).
In most infections, there’s a clear presence of “cure”. Chest X-rays after pneumonia clear up after infection resolves, blood counts return to normal, blood cultures become negative–the patient is “cured”.
Not so with Lyme; with most/many labs and imaging reports being normal with the disease–how do we know for certain when “cure” has happened.
Furthermore, there are two major professional organizations that weigh in on Lyme. The Infectious Disease Society of America (IDSA) is very stringent with its diagnostic criteria and when to use antibiotics to treat.
The International Society of Lyme-Associated Diseases (ILADs) has much more “liberal” criteria regarding when to “call” the diagnosis as positive and for how long to treat with antibiotics.
State Medical Boards have also been known to persecute (yeah, not prosecute, persecute) practitioners who recognize the serious nature of Lyme and treat it aggressively.
It’s a confusing illness, hard to diagnose, IMHO very undiagnosed with a H U G E portion of our population suffering due to it. There’s also strong evidence that it was genetically altered by the Dept of Defense to increase its virulence as a biological weapon with research done on Plum Island CT.
That’s the “short take” on “What’s the deal with Lyme disease”.
Honestly just understanding, no suck it up, it can’t be that bad, get out and do something, it’s an illness that we never know how bad we’re gonna be so plans are pointless, invite but don’t get upset if they bail, etc, when we do get good days you can guarantee we will do all we can then have a crash for 2 weeks as did way too much, a job looks simple to you not so much to us.
I get bad paraesthesia just typing imagine having to scrub the shower I look and know in 1/2 minutes I’m going to have crippled hands so why bother to start, or we can start a job then gets too hard so we move on to another simple thing and repeat till everything is a bit done, etc, most people with fibro are just angered by assumptions like we love being “lazy”.
We enjoy bailing on plans or eating toast as haven’t the energy to go shop or even not eating as can’t even manage that, seriously I have eaten one mouthful, and like nope I can’t even lift a spoon or have the energy to chew my food, we’re tired all the time except for like 2 hours when it’s midnight, oh then is 50/50 if we can sleep and even if we do sleep we do not hit deep sleep so always tired which causes more pain.
Which causes worse sleep issues which causes more pain…. round and round it goes, so we have to have an order I need to do x.y z they are a must so we do those and anything else is a bonus, look up “spoon theory” this may give you more of an idea, or for example, let’s say you have a phone the charging is unpredictable you plugin for the night and is a surprise what % you may get so you wake up.
It’s at 50% everyone else is 100% I have the same things to do as you but on 50% battery so have to optimize, leave out some things that take me down to 0 plug phone in the next day because I had to squish stuff in and that messed up my “battery” more today I have 40%, 3 days later I’m only getting to 5% so I need to do nothing to try let battery recover to a better amount.
Also as my battery is “weak” what takes your battery 1% to do takes mine 4%, so for you having a shower jump in scrub feel refreshed, etc, for me a shower actually takes energy away from me, a walk to the corner shop for you nothing for me like walking the marathon with a limp, we also are VERY good at faking being fine, as we can’t just lie on floor screaming due to the pain all day.
Just picking up a cup can make it feel like a bone has broken in my hand but I can’t scream every time, we can “continue” with pain most people rush to er for, but in the confines of our homes we’re in pajamas easy clothes, pottering when we can resting and chomping meds that don’t help much, so basically anyone you know with FMS feels shit enough as is w/o people who cannot know what it is actually like judging.
“Just exercise” “you need change diet” ya de ya trigger phrases do NOT use them, and in my experience most of US with FMS just want people to grasp what we are dealing with and not brush it off, believe me, most of us at Doctors begging for any fucking help so we’re not this pointless waste of flesh but there’s not even a definitive way to diagnose it let alone treat it.
I am using FMS as fibromyalgia syndrome as it is NOT one problem it is up to 200 symptoms so do you think we’re having fun? headaches lasting weeks? bruising easily, IBS, brain fog, short term memory fucked to shit, I’m at can forget what doing while I am doing it, paresthesia, vertigo, dizziness, eye muscle weakness, just to list a few symptoms bar the “pain”
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.
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.
In 1999, I suffered a back injury at work. Even though I followed my treating physician’s advice, including physical therapy and home exercises, the pain in my back just wouldn’t ease up.
Within a year, I had widespread pain that felt like I’d overtaxed my muscles. (To this day, the area of my injury is extremely sensitive to the touch, as if someone kicked me in the sacrum.) My physician referred me to a rheumatologist who confirmed the diagnosis of fibromyalgia…after nearly six months of medical testing to rule out other medical conditions. I had loads of blood tests, x-rays, MRIs, an EMG test of my muscle function, and a nerve conduction test.
There isn’t one tried-and-true treatment for fibromyalgia, so I can only tell you what has helped me.
Move. Don’t be overly sedentary because your muscles will tighten and cramp. Stretch frequently.
Eat. And I mean real food. I eliminated all fast food and most processed food. Now, I buy ingredients, not food. This naturally reduced my weight by 30 pounds and ensured I was getting proper nutrition. (I don’t recommend supplements because they’re not regulated, so you have no idea what you’re getting.)
Hydrate. Make sure you’re drinking sufficient fluids throughout the day.
Think. Chronic pain irrevocably changes your life. There is a grieving process for the “you” you’ve lost, which must eventually lead you to acceptance. Once you’ve accepted this new life, you’re capable of finding new ways to do things that are physically demanding, like pacing your activities, getting help from family and friends, and the like. Sometimes, thinking is difficult; fibromyalgia includes cognitive “fog.” My solution is lists, alarms, and reminders.
Medicate. Fibromyalgia pain can be difficult to treat. It doesn’t stem from inflammation, infection, or injury. And it doesn’t begin in the peripheral nervous system but in the brain. For these reasons, NSAIDs and opioids are useless. Some people are helped by antidepressants, muscle relaxants, and/or anti-seizure drugs. Personally, I make cannabis edibles. (Yes, it’s legal where I live.) It’s the only medication I’ve found that treats the pain, muscle tension, and depression.
Also, if, like me, the fibromyalgia is disabling, don’t despair. You now have the priceless gift of time, and can do whatever you like with it. Even after nearly 20 years, I don’t get bored. I read voraciously, dabble in writing, watch movies, play computer games, answer questions on Quora, participate in forums, etc.
Yes, of course, there is suffering; chronic pain is unrelenting and demoralizing. But you absolutely can still have an enjoyable life, even though it’ll be different from the one you planned.
Lastly, be aware that fibromyalgia makes many people more susceptible to autoimmune diseases—I currently have three—so ensure you choose a rheumatologist who understands fibromyalgia AND considers you as part of your health care team.
