May 16, 2017

Chronic Fatigue Syndrome


Here’s a free collection of resources about Chronic Fatigue Syndrome (also known Asmyalgic Encephalomyelitis)- Chronic Fatigue Syndrome blogs, support groups, first-hand experiences and advice from people who have Chronic Fatigue Syndrome, etc.

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Chronic Fatigue Syndrome Blogs

Here’s a list of Chronic Fatigue Syndrome blogs- blogs written by people with Chronic Fatigue Syndrome, or about Chronic Fatigue Syndrome.

****Email alexbalinski@gmail.com to submit your blog to this list.***

A Life Within an Illness alifewithinanillness.blogspot.co.uk 2017
Chronic Fatigue Survivors cfs-survivors.org 2017
Dreams at Stake dreamsatstake.com 2017
Infinite Daze infinatedays.blogspot.com 2017
Life in a Slow Lane lifeinaslowlane.blogspot.com 2017
Turning Illness into Wellness corinaduyn.blogspot.com 2017
Pajama Daze pajamadaze.com 2017
Jess CFS jesscfs.blogspot.com 2017
Life With CFS livewithcfs.blogspot.com.au 2017
No Poster Girl nopostergirl.com 2016

 


Chronic Fatigue Syndrome Support Groups

Chronic Fatigue Syndrome Support Groups On Facebook

  1. UK Fibromyalgia and Chronic Fatigue Syndrome (9472 members)
  2. invisiblediseases.com Support Chronic Fatigue Syndrome/ME, Fibro & Lyme (8806 members)
  3. Chronic Fatigue Syndrome Support UK (7583 members)
  4. Chronic Fatigue Syndrome/Fibromyalgia is Treatable (6545 members)
  5. Chronic Fatigue Syndrome Support and Wellness (4879 members)
  6. Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Self Help Group (2780 members)
  7. Chronic Fatigue Syndrome, Fibromyalgia, Myofascial Pain Support (1602 members)
  8. Chronic Fatigue Syndrome Support and Friendship (760 members)
  9. Christians with Chronic Fatigue Syndrome CFS/ME (515 members)
  10. Chronic Fatigue Syndrome Ireland (369 members)

Other Chronic Fatigue Syndrome Support Groups And Forums

  1. Daily Strength Chronic Fatigue Syndrome Support Group (896 members, 7,002 posts)

Chronic Fatigue Syndrome Survey

We’re surveying people about their experiences with Chronic Fatigue Syndrome. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Chronic Fatigue Syndrome**


Chronic Fatigue Syndrome Symptoms

What symptoms have you experienced?

  • Fatigue, joint pain and swelling, memory loss, sensory overload, brain fog, heart palpitations, body crashes where it would just give up, and I would faint and have seizures, a sore throat. (J., 11 years old)
  • Fatigue, chronic pain, lack of energy, depression, brain fog (basically all the symptoms). (Riley B., 16 years old)
  • Extreme fatigue, palpitations, vertigo, light sensitivity, painful back (although this is likely my scoliosis). (Laura, 32 years old)
  • Fatigue, over all random weakness, pain, blurry vision, sleepiness, restless leg, weight gain, back, feet and joint pain, light headedness, headaches, un-refreshing sleep, insomnia, new allergies, chills, hot flashes, trouble standing for long periods, PEM up to days after, sleepiness with coordination, no stamina, numbness/tingling in hands and feet. (Kristy, 40 years old)
  • Muscle ache in legs and one arm, twitching in muscles, spongy feet, word finding, processing, dizzy spells, urine urgency, facial numbness, hearing problems, anxiety. (Billie, 43 years old)
  • Debilitating fatigue, joint pain, migraines, POTS, muscles spasms/weakness, thirst, dizziness, brain fog, difficulty speaking, noise sensitivity, light sensitivity, shortness of breath. (Jessica, 43 years old)
  • Fatigue, joint pain, muscle pain, headaches, brain fog, sore throats, low immune system, depression, insomnia, memory loss. (Christine, 44 years old)
  • Fatigue, muscle weakness, difficulty concentrating, post exertion malaise, dizziness, neck pain. (Heather, 44 years old)
  • Fatigue, breathlessness, dizziness, palpitations, muscle weakness, muscle twitches, muscle pain, easily injured muscles, post exertional malaise, esophageal spasms, reflux, nausea, bloating, gallbladder pain, gastritis, food intolerances, histamine intolerance, low immunity/multiple infections, chronic swollen lymph nodes, brain fog/cognitive decline, anxiety, panic attacks and depression. (Lisa, 50 years old)
  • Exhaustion, fatigue, brain fog. (Julie W., 54 years old)
  • Fatigue, pain, brain fog, insomnia. (Joseph B., 55 years old)
  • Exhaustion, sore lymph nodes, sore throat, headache, muscle weakness, brain fog, feeling off-balance, post-exertional malaise. (Ingrid, 57 years old)
  • Flu-like symptoms: severe aching, lower back and neck pain, extreme exhaustion, numbness in tips of extremities, headaches, sweats/chills. (Shelli U., 58 years old)
  • Mainly fatigue. I will call it exhaustion, weakness..in muscles/joints..(possibly come because of not doing much). I can’t read much any more…Sleeping can be a damned problem… High stress level is easy to reach. (Poul S., 63 years old)
  • Aching, pricking of skin, cramps, no energy, brain fog. (Lynda N., 66 years old)
  • Physical and mental exhaustion, no relief from sleeping, mental fogginess, shortness of breath, depression. (Jackie C., 70 years old)

Chronic Fatigue Syndrome Facts

What are some facts you’ve learned about chronic fatigue syndrome?

  • No treatment or cure, doctors don’t care about you, they forgot I existed. (J., 11 years old)
  • It effects people in different ways. (Riley B., 16 years old)
  • It’s not a well known disease and there is no known cure. There are different levels of severity in every patient, ranging from mild to severe. (Laura, 32 years old)
  • Often people do not believe you, including doctors. (Kristy, 40 years old)
  •  I try and eat healthy, and do small amounts of exercise. (Billie, 43 years old)
  • About 40,000 people in my state suffer from this, 1-2 million Americans, and 17 million people worldwide. There is no cure or approved treatment. Our governmental support worldwide is minimal compared to our quality of life. This is an illness that exists on the cellular level. (Jessica, 43 years old)
  • It varies from person to person, doctors don’t understand how to treat it, it attacks your whole body and mind. (Christine, 44 years old)
  • No cure, could be related to mitochondrial distinction, often presence of EBV, interferes with the bodies ability to process vitamins, impaired immune response. (Heather, 44 years old)
  • That mainstream health care in Australia does not know how to treat and care for ME/CFS patients, and they are dismissive, and have a lack of understanding that it is a complex neuroimmune disorder. (Lisa, 50 years old)
  • Pacing helps. (Julie W., 54 years old)
  • It seems to be related to mitochondrial dysfunction. It also seems to affect many different systems in the body. (Joseph B., 55 years old)
  • It affects millions world-wide, of all ages, ethnicities and genders. (Ingrid, 57 years old)
  • Many times starts from EBV, is auto immune related, stress and poor diet can exacerbate it, and it is very individual in nature. (Shelli U., 58 years old)
  • That..they in Denmark call it CFS, but it’s possibly Lyme–since they talk of the borelia.. The fact is also that it turns out in many forms. Overdoing brings me in a worse condition. I tried a lot and it brings me no change. It makes one very socially disabled. (Poul S., 63 years old)
  • There’s no cure, you need to pace yourself, it’s autoimmune-related. It’s also called fibromyalgia. Doctors are now taking more notice, use mindfulness. (Lynda N., 66 years old)
  • There is no treatment or cure. Doctors don’t have any real suggestions. (Jackie C., 70 years old)

Chronic Fatigue Syndrome Difficulties

What are difficult aspects of living with chronic fatigue syndrome?

  • Frustration, missing out, losing all my friends. (J., 11 years old)
  • Not sleeping, or sleeping too much. Not being able to do things. (Riley B., 16 years old)
  • Working through extreme fatigue, dizziness, palpitations, not to mention being a single mother with an over active child. (Laura, 32 years old)
  • Disbelief, financial stress, relationship problems, no treatments, push/crash. (Kristy, 40 years old)
  • Brain problems, and not being able to be as active. (Billie, 43 years old)
  • I’m housebound. I can’t work, be a mom, drive my kid or myself around, I’m wheelchair bound out of the house, all my relationships are strained except for the few who are willing to learn about MECFS. I MISS MY LIFE. I even miss being able to clean, and cook for myself and my family. (Jessica, 43 years old)
  • Not being able to plan, letting others down, feeling like a burden. (Christine, 44 years old)
  • Everything. Day to day tasks, socializing, taking care of my children, not letting it effect my mood, isolation. (Heather, 44 years old)
  • Being housebound, dealing with symptoms constantly on a daily basis, having very little support, not being able to access adequate healthcare and dental care, lack of funds for treatment that has helped me, having to fund alternative healthcare as mainstream were no help. (Lisa, 50 years old)
  • Being able to live a ‘normal life’. (Julie W., 54 years old)
  • I generally have to spend 20+ hours a day in bed. I am unable to concentrate and learn like I used to. (Joseph B., 55 years old)
  • At its worst I was bed-ridden. I often feel isolated. At times I grieve the person I used to be. I can’t do many of the things I used to enjoy. I feel old before my time. I hate the loss of independence. (Ingrid, 57 years old)
  • Never knowing when I will have an episode affects my quality of life. I’ve had to figure out how to heal myself. Others not understanding the “chronic fatigue” doesn’t just mean you are “really tired”. I can never make concrete plans. (Shelli U., 58 years old)
  • Not finding the strength to do things. (Poul S., 63 years old)
  • People don’t understand because you look OK. Being tired even after a good night’s sleep. I’m no longer able to shop all day or dance. I don’t want to go out, I’m always glad to be on my way back home. (Lynda N., 66 years old)
  • Being so tired!! Not able to do things I enjoy. Feeling so lousy. (Jackie C., 70 years old)

Chronic Fatigue Syndrome Advice

What words of encouragement/advice can you share with others who experience chronic fatigue?

  • It will get better, just take it very slowly. (J., 11 years old)
  • Not a lot, I’m 16 so they don’t give me the right medication. I was diagnosed at age 14. (Riley B., 16 years old)
  • Take one day at a time, don’t push yourself too much and rest where possible. Accept it, and accept any help offered. (Laura, 32 years old)
  • Couldn’t tell… one day at a time. (Kristy, 40 years old)
  • Find some online support. Others who understand what you’re going through. Watch videos about your illness from the scientists who are making a difference. If you can, get involved in activism. It’s rewarding. (Jessica, 43 years old)
  • Stay strong, and be kind to yourself. (Christine, 44 years old)
  • Try to find moments of joy in each day, and have hope for a cure in the future. Definitely pace yourself. (Heather, 44 years old)
  • I believe healing and recovery is possible, so I have to keep positive that I can get through this. There are many different ways to support the body through this, and doing small things daily help with the process. (Lisa, 50 years old)
  • Everyone’s story is different, try to do as much, or as little as your body allows. (Julie W., 54 years old)
  • Pacing is everything. PEM can be devastating, but it can generally be avoided if you carefully monitor your activity and plan downtime between activities. (Joseph B., 55 years old)
  • You can still have a good life, it’ll just be different than before. Find joy in the simple things you CAN do. Be kind and patient with yourself. Find a support group—online works best if you can’t easily leave the house. Allow yourself to grieve, but get help if you get stuck in that grief. Allow people to help you with physical tasks you no longer can do, or that use up a lot of energy you need for other things. (Ingrid, 57 years old)
  • After years of living with this, the last two being the absolute worst, I am on my own journey to healing myself through diet, meditation and natural supplements for the first time in my life! (Shelli U., 58 years old)
  • Count your winnings..not your defeats. (Poul S., 63 years old)
  • I found that vitamin D3 and B12 have helped me. Find time to relax, pace yourself. (Lynda N., 66 years old)
  • I have no encouraging words. (Jackie C., 70 years old)

Chronic Fatigue Syndrome Diet and Exercise

What’s been your experience with diet and exercise?

  • I used to have to eat every two hours or my symptoms would worsen. If I exercise too much I get exhausted, and it makes my joints worse, but I can now manage a short ten minute routine every day, which helps stop my tendons shortening too much, as they were getting so sore. Physios have been awesome, and never pushed me to do more than I can manage. And they come to my house so I don’t get so tired making the journey. (J., 11 years old)
  • I’m diabetic, so not a super bad diet. I can’t do any exercise because of the amount of pain it puts me in. (Riley B., 16 years old)
  • I don’t eat bad, but I don’t eat good either. I can’t exercise because of my scoliosis. I need operations to “fix” it, but can’t until it’s absolutely the last option. (Laura, 32 years old)
  • I heard no real success with anything. I gave up alcohol and nearly quit smoking, but can’t, as nicotine/coffee is the only way I’d make it through my day. And even though I don’t drink alcohol, I often feel terrible, sickly, when I wake up. I rarely leave the house now farther than a few blocks to walk my canine kids, a few times a week. (Kristy, 40 years old)
  • I struggle exercising, and working. (Billie, 43 years old)
  • I’ve tried all kinds of diets. Nothing has made me better, but I feel less worse without sugar and gluten. (Jessica, 43 years old)
  • I only do an hour of gentle pilates once a week in a small class. It helps with aches and pains and my mental wellbeing. I have mostly cut out wheat, dairy and meat, and feel better for it. (Christine, 44 years old)
  • Exercise is tragically awful. I’ve been on AIP, and it makes me feel better. I’ve reversed elements of Hashimotos, and have improvement in energy (mild) when eating compliant. (Heather, 44 years old)
  • Eating well is a priority, not eating sugar and wheat is important for me, and healing the gut is important for the overall health of the body. Doing too much exercise or stuff around the house crashes me into fatigue. Pacing is important to manage energy, ie. stopping doing stuff before using up all my energy. Graded exercise doesn’t work as the symptoms are unpredictable and I easily crash. But I do make sure I move around when I can, and do easy stretching as muscle wastage is a big problem. (Lisa, 50 years old)
  • I find if I exercise I am more prone to flare ups. By losing weight I am now able to do lots of things others take for granted. (Julie W., 54 years old)
  • Diet seems to be unaffected. Exercise is impossible. (Joseph B., 55 years old)
  • I do better if I eat healthier. Exercise has always led to long-term worsening of symptoms. (Ingrid, 57 years old)
  • Paleo diet (after whole 30 diet for elimination of certain foods), drinking alkaline water, yoga, and meditation have hugely helped. (Shelli U., 58 years old)
  • Diet so far..no change. Exercise.. I use the little energy I have to do what is needed to be done. (Poul S., 63 years old)
  • I would love to exercise- I’ve tried, but suffer for days after. Diet-wise, I think going gluten free has helped. (Lynda N., 66 years old)
  • I am not able to exercise much. I get too tired. (Jackie C., 70 years old)

Chronic Fatigue Syndrome Treatments

What’s been your experience with treatments (medication, etc.)?

  • I’ve not had any treatments offered. (J., 11 years old)
  • Sleep aids and gabapentin. (Riley B., 16 years old)
  • I found Modafinil worked wonders for the tiredness. It didn’t stop me feeling tired though, just more hyper over the tiredness and better concentration levels. You have to buy it though, unless you can get a specialist to prescribe for you. I take phenergan sometimes at night to make sure I sleep. Other than that, there isn’t much else that’s worked. I’ve just started trying high strength fish oil capsules and B complex vitamins, so I have yet to see if these have any effect. (Laura, 32 years old)
  • I had physical therapy, and saw a social worker once. Neither did any good, and PT was exhausting. (Kristy, 40 years old)
  • I’ve tried a lot. I’m still trying a lot. Nothing is keeping me from getting worse. I can’t seem to stabilize. (Jessica, 43 years old)
  • I only take Fluoxetine and Amitriptiline for depression and sleep. They help me with symptoms, but not ME. I am allergic to aspirin, so I cannot take a lot of anti-inflammatories, and have a bad reaction if I do. (Christine, 44 years old)
  • No idea if anything is helping – I have combined supplement and RX meds, based on testing for deficiencies. (Heather, 44 years old)
  • Vitamin and mineral supplements help- magnesium for spasms, vitamin B12 for energy, B5 for adrenals, zinc for gut and immune, herbs for immunity and adrenal support help, amino acids for gut health, immunity- L Glyamine, NAC for increasing glutathione, has helped. Transfer Factors and multi immune for hidden viral infections, homeopathy, chiropractor and acupuncture all have helped to alleviate symptoms. I see an integrative GP who is great and a naturopath who is prescribing according to my genome for methylation issues, and treating infections through MTFHR Support Australia. Kinesiology has helped also. (Lisa, 50 years old)
  • It’s taken five years to get a combination of meds that help with my condition. (Julie W., 54 years old)
  • I have not had any success with medication or treatment. (Joseph B., 55 years old)
  • High concentrations of B12 injections helped when I wasn’t in a relapsed state. The thing that helped me the most after a bad relapse was LDN (low dose neltrexone). (Ingrid, 57 years old)
  • I have chosen not to use medication so far. (Shelli U., 58 years old)
  • I mainly use– building up immune system means…I guess it helps. The problem is I don’t feel any changes. I do agree with those who say it should be cured from the stomach. (Poul S., 63 years old)
  • I don’t take any treatments. (Lynda N., 66 years old)
  • No medications or treatments. Anti-depressant. It is so depressing, you’re so tired. (Jackie C., 70 years old)

Chronic Fatigue Syndrome Recommendations

Anything you’d recommend for someone with chronic fatigue?

  • See a chiropractor and someone who offers the Bowen technique. Both of these helped me so much until my mom had to give up work to care for me, and we couldn’t afford it then. (J., 11 years old)
  • Sleep. (Riley B., 16 years old)
  • Go to a doctor, get a diagnosis, and experiment with different things to help, such as vitamins and try modafinil if you can. (Laura, 32 years old)
  • Learn to cope with isolation and poverty. (Kristy, 40 years old)
  • Rest, drink lots of water with electrolytes, find people who understand, keep hope alive. (Jessica, 43 years old)
  • If you can, have a hot bath with Epsom Salts- it relieves aching, and can draw out toxins. (Christine, 44 years old)
  • Try a combo of Eastern and Western medication – if you don’t feel seen by your doctor, go to another. Don’t be afraid to tell people, and ask for help. (Heather, 44 years old)
  • Transfer factors. I have had to go through healing crisis with them, but my immune system is working better. (Lisa, 50 years old)
  • Just remember on good days not to overdo things. (Julie W., 54 years old)
  • Get a solid diagnosis, then follow advancements in the science. (Joseph B., 55 years old)
  • Don’t give up hope. Find support. More and more research is being done, so hopefully they’ll discover a cure sooner rather than later! (Ingrid, 57 years old)
  • All of the above plus BELIEVE you can heal yourself, don’t give up when one thing doesn’t work…keep trying, and lots of prayer! (Shelli U., 58 years old)
  • You have it. Make the best of it! Don’t overdo. (Poul S., 63 years old)
  • As above- find someone else with the same problem who will understand. (Lynda N., 66 years old)

Chronic Fatigue Syndrome Resources

What specific resources have you found most helpful?

  • My mom. (J., 11 years old)
  • Facebook groups and pages, the internet in general and forums. When looking for products to help, I search ‘CFS’ on Amazon. (Laura, 32 years old)
  • ME Action, Bateman-Horne Center, Open Medicine Foundation, Solve ME/CFS Initiative. (Jessica, 43 years old)
  • Prohealth website. I just started looking into nervous system healing. It looks promising, and small actions are helping me, such as breathing and mindfulness. (Lisa, 50 years old)
  • I attended a course run by my local CFS team. (Julie W., 54 years old)
  • I belong to a couple of Facebook groups dedicated to ME/CFS that provide good information. (Joseph B., 55 years old)
  • My CFS doctor, online support groups, online info on research being done. (Ingrid, 57 years old)
  • CFS blogs, medical medium, whole 30 and meditation (changed my life), Dr. Axe and Dr. Whal’s story, and my homeopathic store for great advice on supplements. (Shelli U., 58 years old)
  • The only thing I feel helped a bit was Echina (red sunflower). (Poul S., 63 years old)
  • The support group that I am attending, mindfulness and Facebook support pages on Fibro. (Lynda N., 66 years old)

Chronic Fatigue Syndrome Stories

Share an interesting experience you’ve had related to living with chronic fatigue.

  • Going to Disneyland Paris, and not having to queue for any rides because I was in my wheelchair. (J., 11 years old)
  • It’s painful. (Riley B., 16 years old)
  • I went to a rheumatologist, and when she tried to sent me back to PT, and say no, it was hurtful to me, she yelled at me saying, “Well, I’m not giving you drugs!!” To which I responded, I never asked for any. I just need a clear DX, better suggestion than the PACE trial, and if you don’t have any, I’ll look into trials myself. Then I left her office. Being treated like a junkie, unprovoked, was shocking, demeaning and dismissive, rude and unprofessional. (Kristy, 40 years old)
  • I’m understanding, on a deep level, how much I took for granted. I would love to be able to shop for, and cook my own food. It used to be such an irritation. But here, from this perspective, what I wouldn’t give to experience all the mundane nuances of living. Who knew the spiritual and emotional growth that would come with merely being knocked off your life path, and thrown in bed. My new goals in life are small compared to my old dreams, but the dreams themselves are just as satisfying. (Jessica, 43 years old)
  • Just generally people saying, I hope you feel better soon! (Christine, 44 years old)
  • Going to a dentist who had previously had it, and understood why it was so hard for me to receive care. (Heather, 44 years old)
  • Being taught about pacing. (Julie W., 54 years old)
  • Since I’ve had ME/CFS, I’ve become involved in community theater. By taking on small roles in local productions, I have become friends with a large group of supportive individuals. Their support has made a huge difference in my ability to fight off the isolation of spending so much time in bed. (Joseph B., 55 years old)
  • I don’t really know of an interesting story…I guess the day, for the millionth time, that a doctor’s answer to my symptoms was, “let’s try another anti-depressant” and I wasn’t depressed…just sick! That’s the day I made the decision that if I wanted to get better I would have to be my own doctor, and heal myself, and that’s when my healing journey began…and I’m still on it! (Shelli U., 58 years old)
  • The words people say; “You look so well,” “We all get tired,” are words that are hard to listen to…it’s like they call me a liar…I hate it. (Poul S., 63 years old)
  • None. Just very frustrating. I can sleep for 14 hours or more. (Jackie C., 70 years old)