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.
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
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.
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