Having any disease is scary, but having chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) often adds a hefty dose of confusion and bewilderment to that fear. Not only are people with ME/CFS and FM typically exhausted and in pain, but problems with short-term memory and information processing abound. Unfortunately, ME/CFS and FM patients have come down with a disease with few validated treatments and lots and lots of suggested treatments – many of which are not likely to pan out. Often unsympathetic doctors add more stress to an already very stressful condition.
ME/CFS and FM specialists are rare. While some guidelines are present, most doctors haven’t read them. To an extent not seen in most illnesses, people with FM and particularly ME/CFS are on their own without advice from doctors how to proceed, trying in their fatigued, pain racked, cognitively impaired state to get better. Just what is a person new to these illnesses to do?
In 2015 Health Rising ran a blog titled “Given What You Now Know, What Would You Have Done Differently with Chronic Fatigue Syndrome (ME/CFS)” which received almost 100 comments. Three years later, we used the answers the community came up with then, added FM to the mix, and came up with a draft of an Advice for Newbies document Health Rising will place in its Resource section.
Given What You Now Know, What Would You Have Done Differently With Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia
We’re asking for your help to assess the recommendations below and to add in your own in order to build a page that will provide some guidance for the newbies among us (and maybe some “oldies”) in making their way.
Ideas for Newbies with Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)
If I knew then what I know now, I would have rested more/sooner before permanent damage was done. Person with ME/CFS
One thing to know is that the worst is usually first, that while some people do decline, doctors say that most people improve and then plateau and some even recover. In short, there’s hope! It’s also very important, though, to get very real about what these diseases can do in order to avoid the worst they have to offer – which can be very bad indeed.
The thing I would do differently is to do 3 years ago what I am trying to do now- stop trying to keep up with other people, discard all expectations, get rid of activities that don’t sustain me, and distance myself from people who don’t help. In other words, wake up to the fact that I have a serious disabling illness that needs a drastic change in lifestyle. John
Take These Diseases Seriously – Thinking ME/CFS or FM is something you can push aside or work through can be a recipe for disaster. You should know that studies indicate that chronic fatigue syndrome (ME/CFS) is more functionally disabling than heart disease, multiple sclerosis, kidney failure and other serious diseases.
People with ME/CFS have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia. Twenty-five percent are home or bedbound. One study, found that only an astonishingly low 13% were employed full-time.
Give the disease the respect it deserves.
I would not have pushed myself so hard to keep going, now I know that it probably made me worse. The worse I felt, the more I pushed. Connie
Pace, Pace, Pace
Studies have shown that people with ME/CFS who stay within their energy envelope and avoid the push/crash cycle tend to have fewer symptoms and lead qualitatively better lives. They may also respond better to treatments.
Perhaps hardest and most important tip is simply to pace, pace, pace yourself. Rest. Don’t over do. Pace mentally as well as physically. Try and calm your body down and give it a chance to heal. Many people, in retrospect, rue their attempts to push through these illnesses, which leaded to worsened health. Our survey asking people with ME/CFS what they would have differently if they had only known indicated that many people felt that they pushed too hard and tried to return to normal life too quickly.
Bruce Campbell’s CFIDS Self Help site is the best place to get help with pacing. (Campbell used pacing to recover.) It provides courses, check lists and a wealth of information on how to manage these diseases. We’re very lucky to have it. Also check out Bruce Campbell’s book “Managing Chronic Fatigue Syndrome and Fibromyalgia: Feel Better, Take Charge, Regain Hope“.
One way to monitor your health is to used a heart monitor such as a FitBit to determine your heart rate or an Oura ring or strap to determine you heart rate variability upon awakening. If your heart rate increases or your HRV decreases then you may have overdone it the day before and should increase your rest time.
Check out a post-exertional malaise (PEM) Toolkit designed to help you avoid the push-crash cycle.
Tracking Your Symptoms
Tracking your activity levels, your diet, your medications and supplements, your sleep, etc. is not for everyone but it can help you detect patterns you can use to improve your health.
The tracking app provided in the Solve ME/CFS Initiative’s You+M.E. Patient Registry provides a great way to assess how different factors in your life may be impacting your health plus it provides ME/CFS researchers with (anonymized, secure) data they can use to learn about this disease.
The Solve ME/CFS Initiative’s M.E. Impact Tool provides a clever way to visualize the impact ME/CFS is having on your daily life.
Find some ways to be connected to life even when you are cut off from it; I call this “seeing heaven from hell”. W
Adjust – Yes, some people do recover, but don’t expect a cure and don’t be surprised when you don’t get one. Try to come to grips with the fact that your life is most likely significantly changed for the foreseeable future. That can be a wrenching transition but it can be helped by trying not to spend time focusing on what you don’t have, and finding new ways to enjoy yourself, and be engaged in life. Accept that for now – this is it – and get what you can from it.
Take it from Pema Chodron – a world renowned Buddhist with ME/CFS – who describes how mindfulness and pacing has helped her. (From the Bateman Horne Center).
Let go of unhelpful friends – people who don’t believe in these illnesses or don’t understand your new limitations are energy-sappers. Let them go. In fact, get good at letting things go in general.
Let go of abusive relationships – people stay in abusive relationships for all sorts of reasons: financial, inertia, fear of the unknown. If your primary relationship isn’t supportive now, you might start thinking of different options. These diseases place a huge burden on relationships. If it’s not going well now, it might very well get worse. The emotional and mental strain from being in an abusive relationship is enormous.
I would have listened to my body more and respected it when it needed to rest. I definitely would not have kept going when it was screaming at me to stop. I would have left my job far, far sooner. I would have worried less about trying to appear “normal” for friends and family. Curiosity
Learn how to ask for help – self-reliance has it’s virtues but when you’re ill and need help it can get in the way. You might have been someone who enjoyed helping others. If so, now you can give that gift to others – and allow them to help you. You may have people around you who would help out with shopping, driving you to doctor’s appointments, cleaning your house or yard. Asking for help can be hard – but both parties can derive support from it. Remember that people are not mind readers. Don’t be afraid to ask for help.
I would have accepted my illness and found a way to reduce the stress in my life. It is easier said than done, but in my case, I believe it would have made a huge difference. Jayne
Give Yourself a Break – having an illness does not mean something is wrong with you or that you are damaged or broken. It simply means something has gone wrong with your body. Instead of beating yourself and your body up for getting ill, try and accept it. People get ill all the time and everybody gets ill at some point.
Try to Relax a Bit – Neither ME/CFS nor FM is going to be solved in a day. Your fight/flight system is typically greatly activated in these diseases. Practice putting your body/mind into a relaxing state via meditation and mindfulness techniques and see if you can calm that system down and get some relief.
Check out the “Last Best Cure” blog series and Toni Bernhard’s “How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers“.
Understand that your family may not be able to meet your emotional needs – if you aren’t getting the emotional support you need from your family first have compassion for them – they weren’t ready for this either – and then look elsewhere to forums, Facebook groups and local groups and/or see a therapist to help you adjust. Check out Bruce Campbell’s CFIDS Self-help site as well as well as Toni Bernhard’s How to Be Sick book.
Know that recovery is possible – Recovery is not common but it definitely does happen. Check out Health RIsing’s Recovery Stories section for more.
Find a good doctor – ME/CFS/FM experts are not common but they do exist. Check out Health Rising’s Doctor Resources pages and get advice on Forums and Facebook sites see if you can find a good one. If that doesn’t work, try and find a doctor who will listen and is open to trying new things.
I wouldn’t have wasted a second seeing doctor after doctor who were not specialists in ME/CFS, especially at the beginning when I was so desperately ill and every trip took so much out of me. I would have realized that the extra stress of having people refuse to help me or judge me or blame me just made things vastly worse. I would have found a sympathetic and supportive doctor right away. Curiosity
Lower your expectations about the medical profession – Don’t expect doctors to understand you. To a good extent you will probably be on your own. This is one of the hardest lessons to learn. There are sympathetic doctors out there but there are also doctors who don’t get ME/CFS/FM, aren’t interested in getting it, and just want to see you gone. A few are not nice about it at all. Pay those doctors as little mind as possible. Certainly don’t take what they say personally, and know you are not alone.
Ditch bad doctors – If you hit a bad doctor, don’t get blue in the face and waste your energy on them – they’re not worth the trouble. Instead move on as quickly as possible. Your job is, after all, to find a good doctor.
Watch how a knowledgeable doctor assesses chronic fatigue syndrome (ME/CFS)
Learn how to convince a doctor ME/CFS is serious – many people see doctors who don’t know a lot about ME/CFS/FM but who are willing to try new things if provided some information. If your doctor isn’t getting it about ME/CFS/FM but is willing to learn give these ideas a try.
Educate your doctor – if you have doctor who is willing to learn you can find several educational resources here.
Get a thorough checkup – Make sure you have ME/CFS or FM. Lots of other diseases can mimic their symptoms. Other diseases occur along with it. Learn how to diagnose ME/CFS and/or fibromyalgia and the co-morbid diseases that often come with it or mimic it.
Maximize your doctor appointments – Doctor appointments can be particularly tough. You have a lot of symptoms, your mind is whirring, your short-term memory is pretty much shot and your health is at stake! In short, you need to get organized like you may never have before. Check out a bunch of resources on how to get organized, talk to your doctor about ME/CFS or chronic pain, track your symptoms, etc.
When I first got ill with a virus ten years ago, I was left so weak that I could not stand for more than two minutes, my GP was adamant that I was suffering from depression and he put me on anti-depressants. I wish I had followed my instincts (knowing that this had nothing to do with depression) and not followed this ill advice. Gabby
Check out the Solve ME/CFS Initiative’s Webinar “ “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome”” to find out how to have more effective doctor’s office visits
Learn how to tell the difference between depression and ME/CFS – Many doctors confuse ME/CFS with depression. Depression/anxiety is a natural outcome of having a chronic illness. If you are depressed, get treated for it, but run from doctors who think all you have is depression.
Get Caught up on The Basics
Watch the Bateman-Horne Center’s Six-Part ME/CFS and FM Video Series (see below)
Getting the Right Diagnosis
ME/CFS and FM are complicated illnesses and getting the right diagnosis can be challenging. Learn how to recognize these diseases and other conditions that may play a role in illness presentation.
Activity Intolerance and Pacing
Learn why physical and cognitive activities can cause symptoms to worsen and how to identify and improve the “threshold” of relapse. Review the importance of pacing and realistic expectation setting that can minimize and even improve symptoms.
Getting Restorative Sleep
Poor sleep is a hallmark symptom of ME/CFS and FM. Not getting a good night’s sleep can worsen symptoms. Dive into the mechanics of good sleep with Dr. Bateman and learn why sleep disturbances occur and how to implement strategies that improve them.
Chronic Widespread Pain
Pain is one of the most troubling and hard-to-manage symptoms of ME/CFS and FM. Dr. Bateman teaches about the various types of pain, how pain is amplified, and treatment strategies to improve your own pain management.
People with ME/CFS and FM often suffer from cognitive impairment that can lead to brain fog, trouble word finding and more debilitating symptoms. In this class, you will understand the types of cognitive issues that commonly occur, possible causes, and how to implement strategies to improve cognitive function.
VIDEO 6: Orthostatic Intolerance (OI) Syndromes
OI, Postural Orthostatic Tachycardia Syndrome (POTS), neurally mediated hypotension (NMH), and orthostatic hypotension can all be manifestations of ME/CFS and FM. In this class you will learn to access orthostatic intolerance objectively, how to differentiate between these syndromes and strategies to manage the symptoms they present.
Other Treatment Ideas
Be open to trying drugs – If you’re not open to trying drugs, try to be open to that possibility. Many people have an aversion to drugs, but while drugs cannot cure ME/CFS/FM, they can be helpful. At the same time investigate each drug thoroughly and consider both short-term and possible long-term side effects and be sure to….
Start low and go slow – People with ME/CFS/FM often report that normal doses of drugs, particularly in the beginning, are too much. Always try to start with low doses and go slowly, giving your body a chance to adjust.
If you have fibromyalgia don’t stop with the big three – The FDA has approved three drugs for FM (Lyrica, Cymbalta, Milnacipran) but ME/CFS/FM experts use many more drugs to treat it.
If you have fibromyalgia or pain issues try to find an integrative pain clinic – Most doctors have almost no training in pain management and opioids are their only options. Far more possibilities exist, however, and the best place to find out about them is an integrative pain clinic staffed by physiatrists.
In general use opioid drugs sparingly, if possible, and watch for side effects – opioid pain-killers can be very effective for some but most people should probably use them sparingly, if possible. Watch for possible side effects such as tolerance (need to increase your dose), addiction and even increased pain sensitivity. Make sure that they are not being used as sedatives, as well.
Be open to alternative treatments – Some people, on the other hand, are skittish about alternative treatments including supplements and diets. While they, like drugs, are not cures, some find them quite helpful.
Try low dose naltrexone and medical marijuana for pain – Instead of (or in addition to) opioid drugs, try alternative treatments such as low dose naltrexone, cannabis and CBD oil. Studies suggest that using cannabis products can reduce the need for opioid pain-killers.
Check out possible post-exertional malaise (PEM) busters – Post-exertional malaise refers to symptom exacerbation after exertion. PEM is a huge problem in both ME/CFS and FM. Some people have come up with ideas on how to ameliorate it – check them out here.
Get your thyroid fully checked out – most doctors don’t know how to diagnose thyroid conditions correctly and hypothyroidism is rampant in ME/CFS/FM. Check out how 8 years of illness disappeared in several hours for one person.
Focus on getting better sleep – poor sleep has all sorts of negative biological effects including increasing one’s pain sensitivity. If there’s one symptom you should focus on first with these diseases, it might be getting better sleep. Learn as much as you can about sleep treatments and sleep hygiene. Check out Health Rising’s extensive ME/CFS and FM Sleep Resource Center.
Get assessed for orthostatic intolerance (OI) – particularly postural orthostatic tachycardia syndrome (POTS) – most doctors also don’t know a thing about OI or POTS – two conditions which make it difficult to stand without symptoms. Learn more about OI and check out some self-tests (on page I and 2) on Health Rising’s Orthostatic Intolerance Resources page.
I would have approached anyone claiming to have a treatment for this illness with skepticism, particularly if they claimed it would work for a majority of patients or could cure people fully. Curiosity
Stay away from sites advertising cures – ME/CFS and FM are complex, heterogeneous diseases which are not amenable to single cures. It takes just a minute on a Forum site like Phoenix Rising to understand that people with these illnesses can respond dramatically differently to the same treatment; i.e. anyone who says they have a cure for these illnesses is lying.
Check for mold sensitivity – Most doctors don’t know diddly about mold but it can have devastating effects on one’s health. The turnaround stories from former mold patients are astonishing. How to check for mold issues. Get out of the house with new stuff (clothes) and into a mold-free environment and see if that helps. See some mold recovery stories here, some mold resources here, and be sure to visit Paradigm Change if you’re concerned about mold.
Exercise and Activity
“I would not have listened to STUPID docs to ‘exercise’ it away” Mary Jane
Do not exercise – at least in the way you know exercise. Do not engage in aggressive exercise which raises your heart rate substantially. Instead try a heart-rate based “exercise” program which keeps your heart rate in the safety zone or use a heart rate variability monitor for a more fine-tuned measure of your energy levels.
- Exercise resource center for chronic fatigue syndrome (ME/CFS)
- Using heart rate variability in ME/CFS and fibromyalgia for better health
If possible avoid deconditioning – keep up some activity if you can to avoid the hits that come with deconditioning which include reduced blood volume, smaller heart, increased pain, poor sleep, etc. If you’re bed-bound, try stretching to maintain some blood flow and prevent your muscles from locking up in painful positions. Check out Dan Moricoli’s Yoga program for the disabled.
I would have saved a lot of money each month in the last job I had. I found out I’m able to live just fine on 1/3rd of what I had been making. But I didn’t see that I was wasting money, and I didn’t know I’d need it later. Of course it never occurred to me that I would become unable to work. Sarah
Consider Downsizing – If you’re working now you may not be in the future. Downsize now, start saving for a possibly very long rainy day; i.e. don’t buy that new car, consider moving to a smaller dwelling, etc.
Get Help – Don’t be proud – get financial help if you can – check government and other assistance. How To Get On is an incredible resource for those seeking assistance. Check it out.
I would not have spent thousands of dollars on alternative therapies either. I would have avoided acupuncturists, chiropractors, reflexologists, “energy healers,” etc. I am normally a highly rational and scientifically minded person but desperation drove me to consider all sorts of useless and expensive treatments. Mary
Consider your finances when trying treatments – It’s hard to hold off on possible treatments when you have the money. You never know, after all, when the right things will show up. On the other hand some people have later rued the thousands of dollars spent on treatments, particularly alternative treatments, that had no effect.
Disability – if you are working make sure that you’re paying into long term disability insurance (LTD). Begin your doctors appointments with the idea that disability might be necessary, tell them every time you see them how functional you are, what you’ve had to give up, etc. (Loss of functionality is key to getting disability.)
Consider trying to keep working if you can – Several doctors (Clauw, Lapp, Cheney) reportedly recommend continuing to work if you can. For many the decision to stop working and seek disability is a no-brainer – you don’t have any other choice. For the mild to moderately ill the decision is more difficult. The idea that all you need to do is stop work and get complete rest may not pan out. While stopping working may help avoid crashes (and a further deterioration of health) continuing to work bring money and its own kind of fulfillment.
If disability is likely in your future be wary of going to part-time work – If you’re working and have long term disability (LTD) check to see if going to part-time work will affect your long term benefits if you end up being disability. Under some plans working part-time results in receiving part-time benefits.
Lawyers – If you are going for disability, try to find a good lawyer experienced in ME/CFS/FM disability cases. Do not stint on this – your future finances – possibly for decades – could depend on choices you make now. Check out disability resources here.
Having Trouble with Basic Expenses/ Needs? – Check out AAMES Financial Crisis fund to see if they can help.
Cut the carbs – Cut down on carbs, eat more veggies, fats and protein. Know that some people benefit a lot from low glycemic, ketogenic type diets and consider exploring them.
Allergens – Consider cutting out common allergens such as wheat, grains, dairy, and soy for a month and then try introducing them back into your diet. Go further and try to determine if you have other food intolerances. Every now and then dietary changes can work wonders.
- Check out some dietary recovery stories here.
Processed food – cut out processed foods: they’re terrible for you and are generally pro-inflammatory to boot.
Know that progress is being made and new treatment possibilities are appearing. Subscribe to this website and any others that you think might be helpful.
Please provide any ideas you have that might help out newbies in the comments section
Nice overview Cort.
The most important one for me is Pace Pace Pace Pace Pace Pace… followed with: if you can’t keep up the same boring schedule day after day after day without a single PEM, then you don’t Pace enough.
For the diet section I’d add:
Seriously consider having one or more food intolerances. For years I’d thought I had none. I tried to reduce or leave out some foods for a few weeks and never noticed the slightest difference. Turns out I have several and simply kept eating multiple foods I’m intolerant to each day even when I temporarily left out a single food category.
Thanks. I just added that. When I first got ill I met someone who was cured by addressing her food intolerances…
I would add a small description of how food intolerances differ from food allergies. Most newbies don’t know even know there is a difference and so do their doctors.
Understanding food intolerances is not easy yet very important if you have them.
The link to cfidsselfhelp doesn’t work (there’s a random h added to ‘self’).
Thanks Adam – fixed and I added some more about the site and the book Bruce wrote. 🙂
Thanks for your excellent article Cort! I would add understanding that my husband can’t meet all of my emotional needs.
Thanks – will do
43 years later, I would say to my earlier self : stop feeling guilty – this is not ‘all in the mind’ as you are being told; you can’t fix yourself by ‘pulling yourself together’ as you are being told; in fact – stop caring about other people’s criticisms. They are going to be judgmental no matter what, just remember it is out of ignorance on their part. (And don’t judge yourself over this either!)
In line with that: the more you push yourself during social contacts in order to appear normal and participate, the sicker you get from wasting energy and the more critic you get from people thinking you must be lazy.
Save yourself the trouble twice.
I really agree about the guilt. I think this statement is the biggy in mental health “stop caring about other people’s criticisms”!!! I think it get easier not to care as you grow older and hopefully wiser.
If you are an older woman with CFS and your GYN says you have a strep B overgrowth and need antibiotics, try using a vinegar douche. CVS still sells them. The vinegar changes the pH of your vagina and the Strep dies. Douche every couple days to keep the infection controlled.
Many findings have happened since the ‘how to convince a doctor’ post was written.
It would be MORE than helpful if there was a list of ‘abnormalities’ that have been proven to exist in these two illnesses.
Thanks for the idea. That’s definitely worth a write-up.
The mayo clinic did a study on frequency of co-morbid conditions occurring with fms
I ask this since one night not long ago I found myself being rushed to an emergency room in great pain. I ended up being diagnosed with a very inflamed gall bladder and was sent immediately into surgery. But both of the doctor’s I saw initially and then the surgeon had never heard of ME/CFS and how I wished I’d had something I could have handed them that laid out what has been proven about the illness and I’d have felt much better about submitting myself to their care.
One glaring omission.
For more on Dr. Pridgen’s antiviral protocol for FM (and ME/CFS) check out this page – https://www.healthrising.org/forums/resources/the-pridgen-protocol-a-fibromyalgia-and-chronic-fatigue-syndrome-me-cfs-resource-center.464/
As someone who has tried this protocol and sincerely regrets it (lost half of my functional capacity and most of my savings trying it), I’m not at all surprised that Pridgen is the only “specialist” who posted a self-promoting, What about MEEEE??? comment here.
If you are considering going to him, please read his healthgrades comments for “William Pridgen.” Esp, “stay away unless you want surgery for GERD that is not necessary” and “He promises the moon and delivers nothing.”
Further, if you do go to his office, you’ll be treated to a video he made of himself stating that his treatment is so effective, the only person who failed to improve on it was “too crazy to take her medicines right,” followed by him giggling at himself for demeaning this suffering woman.
Apparently he doesn’t know or doesn’t care that we’re all too used to being dismissed as crazy. Disgusting.
Find a recovered mentor to guide you through the process of recovery.
I knew I was traumatized by my illness. I didn’t know how far reaching the effects of trauma are on the body, mind and spirit. I didn’t know trauma is physically held in the body and affects physical functioning. I didn’t know I had two conditions – ME/CFS and illness induced trauma. I wish I would have known that easing the burden of illness induced trauma by getting treatment would improve my health and functionality. My hunch is there are a lot of experienced patients who don’t know this. I didn’t.
ME/CFS is fraught with opportunities for trauma. Low energy production impacts many systems in the body making it hard for them to function and requiring them to compete for limited resources; there is little understanding of, and support for, ME/CFS; many are isolated and removed from everyday work and social worlds; financial difficulties are rampant; etc. etc.
There is lots of information on how trauma can lead to chronic illness but there is very little on how chronic illness can lead to trauma. Finding a knowledgeable therapist and the right treatment can, as with everything else with ME/CFS, be challenging; however, the improvement that can result makes the effort more than worthwhile. Treating illness induced trauma can have as much impact as pacing, diet, sleep, etc. None of these cure ME/CFS but they can all help improve functionality.
I never needed to get as sick with ME/CFS as I did if I would have known what I had and what to do about it. I never needed to stay as sick as I was if I had known getting treatment for illness induced trauma would help.
I would say if you have anxiety or even depression then it is most probably caused by brain inflammation (as Japanese researchers discovered and Jarred Younger proved and found more evidence on) meaning don’t think it’s the anxiety causing the illness, it’s the illness causing the anxiety.
There’s plenty of tips for managing anxiety and also lots of different medications (note start on a much lower dose than what is normally recommended just incase you are intolerant then slowly build up to the recomend dose )
Remember anxiety unnecessarily chews up precious energy,
Once you’ve got anxiety under control you can now concentrate on managing the physical issues of ME/CFS as others have described.
Also be happy you got ME/CFS now as treatments and a possible cure will be found in the next few years due to massive advancements in technology . Some of us have had this vile disease 30 +years
Subscribe to the Open Medicine Foundation and donate to them if you or a wealthy family member/friend has money. Money is the only thing now that can speed up a cure
Intermittent fasting the 16/8 diet is the easiest. Eat as many vegetables as possible. Ditch refined carbs and junk foods,
Try LDN, but start low and only increase 0.25mg once every 3 weeks. Many people rush upping the dosage of the medicine and then complain it didn’t work.
Some people that works but not many.
Also interestingly many people with terrible disabilities their mood over time adjusts (up) to the new normal. I’ve had my 28 years of M.E. worsen in the last 3 years but I haven’t got depression, moments of despair yes, but I feel my overall mood has stabilised to its former state.
Good luck and hang on to hope!
May I suggest signing up for Dr. Lucinda Bateman’s free Patient Education Class series at BatemanHorneCenter.org? This is excellent fundamental information about how ME-CFS and FMS diagnoses are made, and classes based on symptoms: pain, cognitive fog, orthostatic intolerance, sleep…
I can’t believe I missed that. Thanks!
I had less pain once I got off ssri’s and retrained my amygdala, using the Human Givens methods. Working on healing from abuse also helped greatly.
Eating for gut health and taking supplements for symptoms also helped. LDN removed, or made rare my symptoms
Thanks for passing that on.
Know that depending on the area of the country in which you live (Ozarks), you are considered disposable and the medical profession refuses to do anything for you if you report having a diagnosis of fibromyalgia. (Even prescribe high blood pressure or birth control pills.)
The chronically disposable.
I would reiterate that it’s prudent to find and treat any underlying issues. Once I realized I had ME/CFS and there was no discovered cause or cure, I decided that in the meantime I needed to address any and all underlying conditions I might or might not have. In reality, I found that the only real way to do that is to have a good Homeopath, since most ‘regular’ doctors won’t run the tests you need. You mentioned food intolerances. That’s good, and Immuno Laboratories has the Immuno 1 Bloodprint IGG for food sensitivities. I think there is a link on their site that can find you the nearest physician who will run the test. That being said, if you have Leaky Gut, food intolerances will always be a moving target until that is under control. A Homeopath can also test for Leaky Gut. You drink this ‘stuff’ then they test your urine (or was it feces, hmmmm, can’t remember). We ran the IGG tests every 6 months for awhile (not cheap) and it was always changing because whatever foods I was now eating were still migrating through the gut wall and causing antibodies, even with a 3 day rotation (you eat a food one day, then not again for 3 days). Next on the list, Candida and fungus and parasites. There are really comprehensive tests for gut diagnostics from companies like Diagnostechs. I had a protozoa called Blastocytis Hominus (which can be completely eradicated with Oregano Oil), and practically non-existent intestinal SigA which requires a special probiotic. I had terrible Candida for years and didn’t realize the damage it was doing. It took about a year of protocols; first Diflucan, then Nystatin, rotating herbals, oregano oil and probotics, etc. and I was amazed at how much better my overall digestion was. The change was really incredible. And, then I began to tolerate many of the foods I had been sensitive to. After that, thyroid, as you mentioned and my hormones, which had tanked. I use all transdermal hormones. Most are from Life-Flo which can be purchased online. They DO work as I’ve had many tests, monitoring my hormone levels (Estradiol, Estriol, DHEA, testosterone, Progesterone) to see if Life-Flo was worth the $. And it is. CanaryClub.org is a GREAT site for ordering your own tests, both hormone and adrenal and more. No doctor approval needed. You pay upfront, they send you the kit, you mail them back, they e-mail you the results. It’s run by a doctor. They use the exact same lab as my Homeopath uses and they are reasonable. You don’t need a prescription for the Life-Flo Hormones (good price on Swanson Vitamins online or Vitacost), but some states won’t allow you to have them shipped to you. So, find a friend in another state who will order and re-ship them to you. For thyroid, I ended up with compounded generic Porcine Thyroid in timed release powder in capsules. After that, adrenal function which had tanked and again I ended up with Natural Hydrocortisone also in timed release. You can figure out your adrenal function by doing a 4 part saliva test, also available from Canary Club. Many people with adrenal issues (called Addison’s Disease if your adrenals stop producing cortisol) can’t tolerate generic Cortef, me included. The Natural Hydrocortisone is grown on soy or yam and is only available from Compounded Pharmacies that are a member of PCCA, which costs them $25K to join. Most of us feel SO very helpless in fighting ME/CFS, but you can get a real sense of accomplishment and improvement by addressing underlying issues. I often remark that if I didn’t have ME/CFS, Addison’s and POTS I’d be a healthy old lady!
What do you mean with “if you have Leaky Gut, food intolerances will always be a moving target until that is under control”?
I believe if you have got one strong food intolerance then others are likely to follow later on, especially if you are weakened.
Can I understand what you wrote as: as long as a leaky gut weakens you so much you will keep developing additional intolerances? Or do you mean something like: if you exclude everything you are intolerant to and have leaky gut, you will eventually develop an intolerance against something you eat in that exclusion diet?
As for testing, I live on the other side of the ocean so it’s hard to find an equivalent of most things.
True food sensitivities are IGG and they happen when the leaky gut allows food particles to migrate through the intestinal wall creating antibodies in the system. They are not food ‘allergies’ so even if you identify them if your leaky gut isn’t healed you will continue to have the original food sensitivities and likely
expanding to even new foods. That’s one of reasons for eating any particular food only one day out of 3. When Immuno tests sensitivities you have blood drawn then they put a teeny bit of blood in each vial of food substance. I think initially for me it was like 60 different foods. The blood is incubated in the vial for 72 hours and rated on a scale of 0-4 depending on the severity of the reaction or no reaction. If one can’t get the test done then I would recommend that you research ways to heal a leaky gut and while doing that go on the rotation diet and introduce new foods, like veggies and fruits and grains and meat you don’t normally eat. I found that the easiest way.
Thanks for the helpful reply Stephanie!
What’s the reason for the “That’s one of reasons for eating any particular food only one day out of 3.” idea?
I am among others intolerant to fructose and find that, depending on amount of fructose eaten, I experience days to many weeks after eating a single time too much fructose increased fatigue, chest pain, depression like feelings, cramps, muscle pain, bowel swinging repeatedly between diarrhea and constipation…
Does the 3 day rotation scheme allows the body to heal the gut? Does it allow the body to adapt better to the bad foods and “grow” over intolerances or does it mainly average out the bad effects?
Im glad you all seem to be doing good.
Some cant go so far i was an18yr old single mom working at a kind a walmart. Pain was first and fatigue not sleeping just body weakness my hair would fall out sores in my mouth joint pain. I got a job off my feet i loved it for where i lived i was so lucky! Still pain so weak now migraines tmj was back my doc had to fight to send me to other docs cuz i was on medicaid then fought like heck and got me to mayo. Docs would say fm but this was 96 so they said alot of the stuff i had they didnt know why. My doc thought it was lupus. I had to chanhe doc but this one is just as wonderful and knows my whole story. We keep testing he too thinks its lupus nothing shows on tests im totally fine. But its all so much worse i cant work now all i can do is sleep or be up for two days then crash my bp is high my kidneys failed for no reason. I tried the steriod shots in my back since i could barely stand after the three he did im now miserable. Everything we try seems to make something worse!
Im ok though i sleep feed my cats and myself and sleep more! I sometimes wonder why im in bed but its ok its me. 25yrs or so down.
I like alot on this site but you could use some info for us ppl who dont have money for alot of thinhs to try or are stuck where we are just a corner of its ok you only made it out of bed today tomorrow will be better!
We’re going to be doing more on using mindfulness to combat pain – something you can do at home very, very cheaply :). Low dose naltrexone is a pretty affordable possibility if you can get a doctor to prescribe it. Cannabis can be quite affordable as well.
The reason for the 3 day rotation has to
do mostly with the production of antibodies. Let’s say you’re very sensitive to carrots. Day 1 produces bad antibodies, day 2 even more and so on. So eating it only one day then no more for 3 days keeps only
THAT particular antibody down. That’s why you want to also introduce new foods. It doesn’t heal the gut per se unless you really are having actual digestion issues with a food, not necessarily antibody issues. For instance, I didn’t test ‘sensitive’
for raw onions or green peppers but they make me feel sick when I eat them and I burp them back up like crazy. A true allergy to food might give you anaphylactic shock or hives. You don’t really adapt to a food by rotating unless you’re repairing the leaky which really can be done over time. You’re still creating antibodies from foods by the migration of particles through the gut wall, just not as many with rotating foods.
Under the heading, “Exercise and Activity”, I direct you to this page: https://philmaffetone.com/180-formula/
The idea here is to determine at what heart rate your body starts to burn energy anaerobically, and to avoid going beyond that rate. We DEFINITELY don’t want to get into anaerobic territory, and this page shows you how to determine that maximum rate quite easily.
The prevailing dogma urges us to push ourselves much harder than is actually necessary to maintain (and even improve) aerobic capacity. Dr. Maffetone presents a much better way that we chronically ill folks can appreciate as much as seasoned athletes.
Thanks TJ 🙂
This is an excellent guide. In trying to forgive those who can’t or don’t understand the severity of having ME/CFS and FMS, it has helped me to consider how I might be able to understand this devastating malady if I didn’t have it. I would have no basis upon which to understand it. I ask of those who are still close to me, not that they understand it, only that they believe me and accept that these are my limitations.
Re: getting SSA disability, I would only add, don’t take “no” for an answer. That’s a hard one when you’re so disabled. In fact, after three-and-a-half years waiting for my hearing in front of an administrative law judge, I concluded that if a person is really disabled, it would not be possible to get through the gauntlet of the process of getting disability. Of course, this is just black humor, but it took everything I had and the support of my husband and sister and many others to finally be granted disability. My GP initially just flatly stated that he didn’t do disability cases. I ignored him and wrote the letter he needed to write to support my claim, along with copies of the lab results. I had to do the same for my last boss, who fired me because I was too sick to do the job. I wrote her letter as well. What I said in the letters was absolutely true, and both signed them and sent them in to SSA. Finally, when the process dragged on and on and on, I contacted my congressional representative to look into why my case was taking so long to get to a hearing. I found out that my own disability lawyer had canceled a hearing six months before. I had been told by my lawyer’s office that Social Security had canceled the previous hearing. I believe it was helpful to have my case on the radar of my congressman.
I guess support groups are a thing of the past, but they were invaluable to me for many years. I have maintained many friendships with members from those groups and they are now my closest friends.
Listen to your body! The sooner you stop and rest, the less severe the flare up.
Practice gratitude. Thinking about what’s good in your life helps lighten the load of what isn’t.
This is a great list of advice.
My only addition, which may be covered in some of the courses and websites, is to let go of thinking that your body is failing you just because you are sick. Instead think of how hard your body is working to get well, and be grateful for it. Your body is on your side.
Ramsay prescribed complete rest from the inception, which makes sense, and can lead to recovery…see David Tuller’s recent post on a patient of Ramsay’s,
ME/CFS can have a number of precipitants but it acts like a viral illness similar to polio.
Our immune system needs enormous amounts of energy: ‘rest’ is not passive, it conserves energy for the immune system to actively fight whatever the pathogen is.
This is advice from someone who did take three months off work, then worked from a wheelchair and bed, then, with consistent improvement, continued with a lifestyle systematically planned to minimise exertion.
My wheelchair gathered dust for several years until age caught up with me!
Still active, though limited by ME, at 83.
Apart from investigations to exclude diagnosis of any treatable conditions, going to the doctor is a wasted exertion and should be avoided especially in the crucial early stages, when complete rest has the best chance of resulting in significant recovery.
Again thanks SO MUCH!
I wish I’d known how devastating major stress can be on ME/CFS. I’d had ME/CFS for twelve / thirteen years and thought I knew what I was doing. But after four months of heavy stress/distress I had a major increase in the severity of my illness. From functioning at about 70/80 % I dropped to 20/30 %…and pretty much stayed there. I’m sure I’m not the only one – perhaps worth adding??
Bruce Campbell’s website felt like a life saver for me – it is so good. Love the whole article – so many good points! Thank you, Cort.
Thanks for the share Ali and your nice words 🙂
The only diet that I have found that is intended to heal the gut and become as inclusive as possible (as opposed to elimination diets) is GAPS by Dr. Natasha Campbell-McBride, MD.
Start with IgE and IgG food testing and possibly IgA…many chiropractors give these tests also. There is also low dose allergy treatment that works on foods.
Thank you so much for this article!! As someone just in the beginning of ME/CFS, it helps so much by providing orientation and even a bit of hope! I just hope my illness gets better over time, not worse, as I am already nearly bed bound, so every tip is worth so much!
Thankful for your work!