Autoimmune Fatigue….Tips To Cope When You’re Tired

 

Overwhelming fatigue….just the phrase itself sends sufferers of autoimmune disorders into a chorus of affirmative head nods.  Whether the fatigue stems from Lupus, MS, Rheumatoid Arthritis, Fibromyalgia or Chronic Fatigue Syndrome itself, the debilitating feeling of completely “running out of steam” is universal. Just like every person is an individual, no case of autoimmune fatigue is the same. Some people experience long periods of incapacitating fatigue while some even endure months of it. The key is to be familiar with your body and work with it. For instance, on the days that you are symptom free, you can schedule more activities and on those days where you have unrelenting symptoms, you can plan fewer activities. Feeling tired all the time can lead to stress and depression so it is vitally important that you plan your coping skills in advance.  Here are a few tips to help you through those days.

Keep a journal of your symptoms 

On the first sign of autoimmune fatigue, take careful note of what you did previously. For instance, were you under a bit more stress than usual, did you eat differently or forget to take your medication?  By diligently maintaining your journal, you may be able to recognize a pattern.  Note the times of day when you feel fatigued and speculations on what triggered it.

Get a good night’s sleep

This is easier said than done in a Spoonie’s day to day life. When you have an autoimmune disorder, pain may keep you from falling asleep easily, or it may awaken you during the night. Disrupted sleep inevitably results in day fatigue. Try to develop a nighttime routine and not deviate from it.

Prioritize your time and energy

There may be times when you feel more fatigued than others, and you will have to deal with limitations to your energy. Your energy is a commodity that you must protect and sometimes ration out. This may involve saying no to lower-priority activities that take up too much of your energy. When you’re feeling exhausted, foregoing some activities is  necessary to get the rest you need.

Ask for help

Asking for help may be difficult at first, because autoimmune disorders are not always visible, you may be afraid that co-workers and friends will perceive you as lazy.  It is very important to recognize that asking for help actually benefits everyone.  Allowing someone to assist you in completing an activity may yield more time to spend with loved ones.

These are just a few tips. Do you have any fatigue tips to share, please comment below.

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  • Richard Thompson

    I know all about the trouble that family has with understanding your fatigue, and the depth of it. You hang in there, and just take one day at a time. Maybe your family will come to an understanding of it over time. Again, I know what you’re going through. God bless you!

  • Richard Thompson

    I have Psoriatic Arthritis, Psoriasis, and degenerating disks in my back and neck. I’ve lived with varying degrees of pain for so many years now, but I can’t push through it like I used to. It started badly for me about four years ago. One Sunday, I got up to go to church, and I couldn’t even finish dressing myself. I ended up sitting in my recliner or lying in the bed for about three months. Most of the time I was sleeping. Even something as simple as taking a shower was a major deal, and I lost my appetite just about completely during that time. My doctor said, “You’re just suffering from depression”, and gave me Celexa (Citalapram). It did help my mood some, but didn’t change anything else. Finally, I managed to find what works for me. When I take pain pills that are opiates, it is amazing how I change. My appetite comes back, and I’m a totally different person, with energy like I had before the long-term stress from fighting the pain finally had it’s way with me. So, here’s the plain truth. I went to a pain specialist, and fight now, I take a pretty hefty amount of Oxycodone most every day. When its not so bad, I take a whopping dose of Tramadol, and combine it with 900 mgs of Gabapentin. It works. Keeps me up and going, and keeps me eating right. Now, pain pills really don’t heal a person, they just cover up the perception of pain, so, like about everyone else on this subject, I really have to watch how much I do, and not overdo things even when I want to keep going. I’ll have to recuperate for a couple of days when I ignore my true energy level. My wife left me about a year after the fatigue thing first hit me. I suppose she was lonely. I was there, not not there, and I believe that many of you folks can understand that. Now, I have married again, and though my wife had a bit of a problem with it at first, she did come to fully understand the depth and type of my problem. She is so supportive, and can tell when I need to stop just by looking at my eyes. Am I addicted to Opiate pain meds? Well, I imagine it would be a rough go to quit them all at once, but I’m not going to. I value my cardio active health above all. Its amazing what I can do sometimes when I eat well in the morning and then dose up with two cups of hot tea, and about 30 mgs of Oxycodone. I’ve been known to knock off 50 miles on my bicycle, and I am a 62 year old guy with severe autoimmune problems. I used to ride 70-80 miles two or three times a week before all this happened, but I am satisfied the most part with my abilities to do physical activities. The key is to pay attention to the signs of your condition, and learn to recognize the good days, and the first indications of an impending bad cycle. I’m sort of stubborn, and would overdo stuff sometimes, but as I mentioned previously, my wife will pretty much order my to stop, and I’ve learned to listen to her (most of the time). I also have started to be realistic about the fact that I am not a young man anymore. Thank the Lord that with a lot of research and a good rheumatologist, I finally understand what is wrong with me. I was so desperate for an answer for so long, and I tell you, no one, including my family, and my doctor would understand how truly fatigued I was. Seems like everyone’s advice was, ” You need to get up and get moving!” Right!! Also, their unsaid diagnosis was always, “Quit laying there just feeling sorry for yourself!”. They didn’t have to say it…I could read it well enough on their faces. Heck yeah I’m addicted to Oxycodone, , and guess what…I don’t give a crap about it, or what anyone else thinks about it. It has been the best thing that has happened to me in recent years, along with my incredible, understanding and supportive wife. Keep fighting your disease. Never, never give up!! If anyone who reads this needs advice or support, my email address is: [email protected]. I mean it…I’m here for you anytime. May the Lord bless us all!

  • Tish

    I have behcets and fibromyalgia and 3 kids and a husband who left me because he couldn’t handle my sickness. Now I’m a single mom with 16,14, &10 year old all by myself and I’ve never been more exhausted not sleepy but overwhelmingly exhausted

  • Amy

    I also feel extrmly fatigued with APS & Diffuse CTD , family doesn’t get it…they think there is a quick fix, easy solve..oh take this it will help,…then when it doesn’t?? I feel like I explain to them till I’m blue in the face…only others with illness can relate..but you need family support..why can’t they understand..? My eyes water & get red the more fatigued I am & get headacks when I’m exhausted..

  • Liz Beirne

    Janet, that sounds familier. Although my family claim to believe I have ME, there are so many occasions they think I am just using it as an excuse for not doing what I don’t want to, or am just being lazy.I brought up 12 children on one teachers salary.Could I have done that if I were lazy? Sorry , it does annoy me , and being cross is such a useless waste of energy.

  • Helaina

    most medicines only help to relieve symptoms not the actual disease. i’ve found it best to use natural forms of healing such as juicing … juicing can and will save your lives .. you may still have symptoms from whatever you’re disease or illness is but you will feel a hundred percent better .. and the education is free so long as you can use the internet .. since I’ve been juicing I’ve lost weight gained energy even my moods are better.. my daily research and personal notes have helped me to not only stay on track but help others get started as well .. shoot i went to this thrift store and bout like 15 books for less than 20 bucks .. all on nutrition and health natural healing and juicing … some were business books … but my point is you don’t have to just lay down and suffer .. be proactive and responsible for you’re own health change you’re thinking … change your normal habits … change what you normally do when you feel pain tired or even restless .. i know what its like on both sides of the fence and let me tell you the grass here is most definitely greener .. this is the side of the fence where the grass gets watered and sunshine and continues to grow naturally you all deserve the same .. it saddens me to read that some of you even have family members that complain about helping .. its hard to tell people your tired they never believe it .. or take it seriously its not the same tired as just being sleepy b/c you’ve had an exhausting day or worked out etc .. its draining and causes pain and mental illness as well as depression .. if you don’t want to feel this way don’t .. and don’t allow others around you to go on thinking you’re just tired .. sit down with them and explain to them the seriousness of it .. the more they understand the more they will hopefully begin to help .. and you’ll see the energy around you change .. everyone’s energies affect each other so if you can create a positive energetic environment for yourself to be in that will also help as well … good luck to everyone !!! bless up!

  • Niamh

    Hello…

    I’ve been sick with the last two weeks solid… fatigue, joint pain/weakness/stiffness, pain breathing and shortness of breath, hands changing from pale to red and white blotches to vivid blue veins…
    I had experienced the painful symptoms and SOB on occasion, only lasting briefly each time, since my mid-teens, and I’m 21 now. I’ve been to A&E twice in last two weeks first time because of severe pain breathing and second time because of severe shortness of breath that turned me blue.
    I can’t walk any faster than a shuffle and feel unstable in doing so, I struggle to do simple daily activities e.g. dressing and cooking, I’m constantly tired and getting more tired, I’m on anti-inflammatories but still sore, and breathing has improved but still isn’t right.
    Doctors can’t find a thing. Chest x-ray, loads of blood tests, two ECGs, ABG test, everything coming back normal… My GP is mystified but is in the process of getting me a referral to a rheumatologist asap. She can only say that it’s either a nasty virus or an autoimmune disease, although she’s sure the bloods would have shown something by now. I’m not convinced by anyone who says it’s a virus though, TBH (not that I’m a doctor or anything), because of having had some symptoms on and off before.
    Right now I’m finding the fatigue to be most debilitating which lead me to this page. I can’t walk but can shuffle – but the lack of energy makes it 10X as hard to even shuffle. What do you people think my mystery illness sounds like? I already have Asperger’s Syndrome and ADD to deal with but I agree that the organisational skills that have helped tremendously with those will help anyone who’s dealing with fatigue or any other illness… Planning and scheduling is so important, and it would be such a luxury to not have to do any of that.

  • Lisa

    One easy way of journaling is to make a template and print it out. I use one that has 7 days across the top, and down the side it has domains to be rated 0 – 10: pain, fatigue, nutrition, depression, cognitive fog; and space to write hours of sleep, the weather, and any significant events for the day. In one sheet of paper you capture a whole week, and completing it takes only minutes per day.

    For my purposes, it is more useful to keep a detailed log of what I eat as well as when/what meds I take, so I do that in addition.

    Hope this helps those who aren’t keen to write a lot.

  • Janet

    I quit asking for help; my able bodied boys usually don’t help and my husband will just say he’ll do it and then late complains about the boys not doing anything. That, in itself, is stressful. My house looks messy, disorganized, etc. I wish I had a cleaning person to come perform the deep down cleaning. I get fatigued all the time. (I almost forgot what the topic was .lol) I wake up late, take a nap, and this is daily anymore. My sister says I’m sleeping my life away and goes on to tell me how she dow her life. I have fibromyalgia, a friend of hers ‘had’ it but cured herself so it is very hard for me to talk to her.

  • Diane

    Sue,

    My 27 year old cousin has been suffering with crohn’s disease for many years, and I honestly don’t know how she has survived with such pain. She has had multiple surgeries to remove parts of her intestinal tract, and made it through a successful pregnancy without medication. The only thing that helped to diminish her pain, at times, was to soak in hot water. She often came to my house to use the large garden tub we used to have, and many times I’ve had to rush to her house because she couldn’t get out of her tub without assistance. Crohn’s is a horrific disease I would wish on no one. I have severe fibromyalgia, chronic daily migraines, and osteoarthritis going on 39 years and was humbled to see what my cousin endured. My prayers go out to you.

  • Gina – Just wanted to say, my passion is politics. (I know, sad.) One year, I got the chance to go to Labour Conference as delegate. (UK)
    For 5 days, I put on my best frocks, my highest heels, I dug out my old work jackets and used stupidly expensive make up.
    I was there from 9am to at least 10 pm every day.
    A week later I had a massive seizure. We all do it, but bloody hell it was worth it, just to feel alive and real and involved.

  • I know there’s always someone to add a condition, but Crohn’s disease is autoimmune too and I’d really appreciate a mention now and then.

  • Diane

    Vera, you are so right about the Flylady site. I was a subscriber for many years, and learned to get things done 15 minutes at a time. I could also get my kids to help out around the house if it was in 15 minute spurts, and the support and encouragement you get from there is priceless. I have been dealing with Fibromyalgia since age 13, and chronic daily migraines since age 15. I turned 49 in October, and wasn’t properly diagnosed until I was 30. For 17 years I was being treated for Rheumatoid Arthritis with no results from the anti-inflammatory meds; go figure. My husband is encouraging me to file for disability, and though I want to work I am having problems finding and keeping a job. I was laid off last Feb. and was unemployed until Sept. where I lasted only 6 weeks. Now there are no jobs available in the small, rural town I live in. If I go on disability now I won’t be eligible to make enough to support myself. My husband has been disabled with heart and lung problems for the past 6 years, and in the past couple of weeks he has had to go on constant oxygen. His health is deteriorating rapidly & I fear losing him. Anyway, I saw the many questions about keeping a pain journal or diary, and I have found one that works well for me online. I print copies of the pages and fill in the blanks each day, storing everything in a binder that I can take to the doctor with me. It seems to cover all of the issues that doctors want to know. It can be found at:

    http://www.partnersagainstpain.com/printouts/Daily_Pain_Diary.pdf

    I hope this helps some of you as much as it has me.

    Bright Blessings for us all.

  • To Clair Nunnybear,
    You can be ‘fired’ for being ill. I was a primary school teacher in the UK. After long and complex spinal problems with surgeries and so on, I was unable to return to work when expected. My headteacher started dismissal proceedings against me along the terms of ‘incapability to work due to ill health’!!! Rather than be dismissed, I decided to resign. It was a lengthy and very unpleasant process that I have still not recovered from. Life with illness is tough!!!

  • Vera

    Please take a look at flylady.org. Some of this is overwhelming but the best advise she has toward everything, but esp. housekeeping is to do what you need to do in small increments. She suggests 15 min, but if you can’t do that, 5 or 10 min. is more than nothing. I use the timer and do 15 min of work, rest 15 Or more, and then do 15 min more. You can do a lot in 15 minutes. I made a list of Stuff I REALLY need to do (dishes, laundry folding, putting laundry away, etc) and that is what I use my 15 minutes for. I take my time and don’t rush, esp. if I’m having a bad day. I don’t do it every day, but if I can’t stand it anymore, I know I can do it, a little at a time.

  • Wow, reading a lot of interesting comments here after I wrote my long one – glad I’m not the only one who answered with a long comment. Also that it helped folks.

    I do my journal on my computer. I open a word processor, put the date and year for title and file it by month in a Journals folder in my hard drive. I never print these out, there’s no point. I leave it open all day and comment into it as things happen. Then skim back and read.

    When something changes my routine, like an afternoon class I took for 20 days online, I sometimes forget my pain pills. I discovered halfway through the class that if something’s too immersive I’ll forget them and give myself an unnecessary bad day. I started paying more attention to that and the last half of the course went a lot better than the earlier part.

    I took notes on the class by hand in a sketchbook to sketch with them and found out why journaling longhand is no longer an option – four to six hours of it will wreck my hand joints. I hurt my hands pretty bad with that much activity with a pen. So it’s a good thing I type the regular journals or I’d use up all my spoons on journaling.

    Typing comes easy to me, it actually relaxes me. I’ve been online most of the time since I got sick and had Internet access so that’s become routine – my body’s used to it and I type faster and more accurately than I can write longhand. Heck, I was typing longer than writing long before I had a computer because my day job was typesetting back when I could hold one in the 80s.

    It makes me question everything, even my moods. I found out my moods directly correlate to my medication and pain levels (especially forgetting medication and getting unfiltered pain) much more than to outside stressors. How I handle them depends on whether I’ve remembered my pills. It gets scary but in a way comforting, it’s one more proof I’m not crazy.

  • Clair – nunnybear

    Helen, with regards to your disability claim. Not sure where you are but this website has a lot of useful information about benefits in the UK ESA and incapacity and the forms and examinations you have to go through and how to complete them, what to say at interviews, medical exams etc. You may find something relevant if you are not in the UK but if you are so much the better. Many have told me they have found it invaluable. Good luck.
    http://www.benefitsandwork.co.uk/

  • Amy

    It’s weird, but even though I’ve been told I never really had lupus, I’ve been allergic to the sun (too long & yes, I get hives, although NO ONE seems to believe me!) & ever since this body-wide joint pain started in 1984, if I’m in the sun too long, I DO get a “butterfly rash” (I finally started taking pix w/ my cell phone cam to prove it) & my pain gets way worse. I got dandruff when we lived in Puerto Rico, but it was controllable easily – but as the joint pain got worse, it got less & less easy to control the scalp problem. Now. they’re arguing psoriasis v. seborrheic dermatitis & eczema, but a couple of my colleagues who have discoid lupus believe that is what I have, & 2 of them said they had to have odd skin lesions biopsied, & one knew of someone who had scalp lesions primarily. I get some lesions on other body areas, but not as often as on the scalp. Discoid lupus apparently more closely follows my pattern of having the ANA be positive sometimes & negative others. So, anyone here have discoid lupus? Anything similar to mine? I know I have fibro, but I believe it overlaps lupus. I’ll possibly find out soon; I got a dermatology referral. My friend said push for a biopsy no matter how they balk; my MD agreed & I believe would have put down that she wanted a definitive diagnosis by biopsy so we know how to treat. I mean, if it’s psoriasis, the treatment is way different from discoid lupus! With my luck, it’ll be both.
    Whatever the case, I’d have to say the thing that makes me most tired is coping with doctors who already have their minds made up on what’s wrong with me & refuse to be confused by the facts of my medical history! My primary care doctor is wonderful, though – but b/c I’m on disability, I have to change to Medicare & start all over again…starting March, so I’m gonna work this relationship as long as I have it.

  • Dennise Whitmore

    I received a call from the Breast Cancer fundraising, I remember when Susan Kohlman started this after her sister died. Back then we did not have much information about breast cancer. She made a huge difference and in our schools, medical professionals, people on the street now know if this.
    So when the lady called me, of course I want to give, my daughter did the breast cancer walk when I could not walk that far.
    I asked the woman how do I begin to make a difference for Fibromyalgia? That heavens for this site and others to help me understand my own body, the fatigue, the restlessness, loosing friends because you can not plan anything until that moment as now I am held hostage in my own body. I was asking for help education, research within our government. Congressman for our area staff was helping me until they themselves did not understand and didnt have any resources for this kind of thing. I was fortunate enough that his Chief of Staff put me in touch with the medical research Doctor here at the University. There is much money given each year by the NIH, but I can not find where there is any medical research for Fibromyalgia. I live in an area where we do not have any resources, no support groups. Education is needed for all including medical professionals. I see so many suffer in silence, turn to alcohol and drugs to ease the pain, as family members and friends do not understand. The public, and many others look upon you as lazy, just pick yourself up by your bootstraps and get over it,(including myself) all of the things that all of us here have heard.
    I am fortunate that I have a good team of Doctors. I thought the way that everyone in the public does, I thought that there is something that I am not doing correctly, I did not believe that you need to take medicine for anything, that the body is meant to heal itself. I thought that if I pushed myself I would conquer the fatigue and the pain. Until I could not do anything, my body and my mind were not working. I put myself into a deep depression, which I also beleived was a cop out. I stayed in bed for over one year. I gained 50 pounds. I increased my risk for diabeties, heart problems, my cholesterol reached 450.. The Doctors that I found through prayer and education from this website and the American Pain Foundation are excellent, understanding, up to date and serving rural areas. The Doctor that I have for Pain has a Health and Wellness Practice and has taken the path to come to a rural area and treat us These Doctors that are treating myself and others coming to a rural area where the poverty level is great, not many wealthy people here. My pain doctor I beleive is trully doing Gods work. The Arthritis Doctor understood and was the one who diagnosed the Fibromyalgia, when the previous 5 Doctors that I went to said it was all in my head or that Fibrmyalgia is a wastebasket diagnosis. Get some sleep and you will feel better. You are the age when you probably just need hormones.
    My Family Physician provided the necessary Home Health Nurse to help me learn to accept and understand the deep depression that I had fallen into
    The Doctors that I have now have put up patiently with my stress and upheaveal from my ignorance of the problems, when I said I just wanted to get better. None of the Doctors that I have now clouded my mind with fairly tales of magic potions to get me better. This is a condition you learn to accept and alter your life. I was told over and over this is a management thing. That is hard to hear when you have always been active, I worked in a lumber yard, I helped loading trucks and unloading lumber,cabinets, drove trucks and worked side by side with men all day. My second job was working as a Corrections Officer in a jail. I was not sitting home alot. I remodeled my 1867 year New England Farm house myself so I did not worry when I bought an older house, as I knew I could do the work myself that needed to get done. It is so frustrating to me to look at what needs to get done and knowing that I cant do it. So then I try and then I am in bed for three days or more. I can not even mow the lawn. The RA in my body along with the fibromyalgia reminds me over and over. I feel there is a stranger that has my body. It was myself that I needed to understand this cruel disease more than anyone. It has taken me three years to understand and give in to listening to my body and my Doctors. My house is set up for moment by moment living. Paper plates and tv dinners are always here. I still try to do things that my body can not, I still call my Psych Nurse when my mind betrays me. I still see a Doctor for depression.
    My daughter is living with me to help, my counselor has explained and shown her how this all effects me. She is proud to have a mother that works with this and understands that the depression that comes with the deteriorating degenerative diseases I fight each day. She understand that I will get worse, but knows the triggers and helps to stop me from doing things that I can no longer do. It was harder for my eldest son to understand and see me in bed everyday, who worked with me side by side reconstructed my old house and always saw me physically strong. He also relocated here to help with the things that I could no longer do. They both love me and I am very fortunate, but I still feel the guilt and feel that I am a burden that they should not have.
    I have been forced to my knees with pain and I had to find help. It took several years and many doctors to find this team. It took me putting myself $20,000 in debt, trying to get by when the pain struck me so hard I could not get out of bed, then of course depression when no one can give you an answer or reason why I am no longer mentally or physically able to take care of myself. At the time this began I always the sole provider.
    I am asking anyone and everyone to help me in writing and conversing with this Doctor at the University that is in Medical Resarch who is willing to listen. He has been granted money for many other conditions, but has never received anything from NHI for Fibromyalgia. This is such a rural area and many Doctors are not as willing to come here.
    I want so despartely to get the NHI and others to recognize this, more information for family members, the public to look and see us, the survivors of this humbling conditions that we are blessed with. ( I have to choose that there is a reason or I do not feel I have a purpose).
    So please write to me, call me, tell me what I can I ask of this Doctor at the University Medical Research in better language than I know so that the grant writers in all Universities take this seriously. I do not have a college degree nor am I good with words in explaining this condition. I loose track of my words at times and I have a hard time explaining while I am fighting my mind and my body. I am still trying to learn it myself.
    Thanks
    Dennise

  • I have had fibro, rheumatoid arthritis, degenerative disc disease, Sjogren’s, Raynaud’s, and osteoarthritis for the past 15 years. As I look back, everything started with symptoms of Sjogren’s in my teens and a diagnosis of Raynaud’s in my 20’s. I have always been very active and even a fitness instructor from time to time in my life. It’s hard to accept that I can no longer work as a nurse, much less keep a clean house or socialize much. My husband says he understands, but his actions speak otherwise at times. He gets angry with me for not “pulling my share”. I wish I could make him understand just how it feels to have your life stolen from you and to be in pain all the time. I can really relate to all the comments. Just last night at my yoga class, I met a student with RA. We were so thrilled to meet one another just to have a kindred soul. I’m in the process of applying for disability. Any tips on this?

  • Darlene

    Since my episode of falling asleep when driving back in February, my husband is taking me more seriously. I think that sometimes he still scoffs and doesn’t believe me that I need the rest, etc. etc., but he has been present when I’ve just fallen asleep in mid-sentence.

    Now, that doesn’t mean that he helps any further in the house. In fact, I have to really work hard not to bite my tongue. I miss a clutter-free house, I really do.

  • Unfortunately, Clair, yes, they CAN fire you after 21 years. The ADA entitles you to a job you can do with accommodations, but does not entitle you to a job you can’t do. At the point that I was fired, the only accommodation that would’ve gotten my job done was an assistant to do all the work for me.

    Being a paralegal, I had read up on the law as soon as it was enacted, and knew that there was no way I could dispute the firing.

    I have some posts in my blog, the gist of which is that when people work up till the day they die, it’s the employer, not the employee, who deserves the kudos, because the employer was humane enough to not fire the person when they fell below normal productivity. Most employers are too focused on the bottom line and won’t tolerate someone who can’t put out at 110%.

  • Gina

    I have a mitochondrial defect, and long ago learned to deal with a lower “energy budget” than most. I go through cycles however, where nothing I do works, and I just have to sleep most of my days away, for months at a time. However, some things I learned that aren’t important.

    A clean house.

    A clean car.

    It is perfectly okay to buy paper plates so you dont have to wash dishes. Microwave meals are perfectly acceptable (never mind that there are days that heating up a meal requires too much energy!)

    There are times I push it so that I spend my reserve on a “good” day. Then I discover to my utter dismay that I am wiped out for days on end.

    I have had to push myself way beyond my limits way too many times for things that had to be done (taking care of sick/dying relatives for instance, all sick from the same thing) and so I have deteriorated my body years ahead of schedule. I have robbed peter to pay paul so someday will have to pay the piper so to speak. My neuropathy is horrible. My energy levels are nonexistent, and my mind doesnt always function the way it used to.

    I am the Dragon, however, and no disease will ever fully defeat me. It may kill me, but it won’t defeat me.

    The Dragon lives on….

  • lena

    I have firbo pain severely for the past 3 years, and the many replies i have read have been most informative. One thing that i would like to know more about is the JOURNAL. I have tried, but get very comfused on exactly how to set one up properly, so i can retrieve the info, and use it to best benefit me. Dose any one out there have a good working journal that people can apply to their chronic pain illness. I believe there are many people who need help in this area.

  • vbc2000

    About sleep – generally getting enough rest is KEY. What I’d like to add though, has taken a while to occur to me but today I really made the connection…because I’m absolutely exhausted beyond the normal fatigue. For some reason, I thought if I don’t have anything scheduled for the next day, it’s ok to stay up real late watching tv or surfing the net. WRONG! Regardless of how late I sleep the next day, I put myself in this rapidly accumulating state of more extreme fatigue that I don’t come out of for at least a week or more. Not a good place for me to be especially because I have to work full time. So I would venture to advise you all, in addition to myself :), to keep a regular sleep schedule regardless of what day it is or what you have going on the next day. I wish I had figured that out yesterday before I stayed up late again…’cause I’m just back from vacation and back to work tomorrow 🙁

  • Dreama White

    My tip is for those days that are better then others. I made the mistake many times for when I feel better to do all the things that I needed or wanted to. Needless to say I ‘over did it’ ! Wound up worse off then on my ‘normal bad days’. Yes, I took away all my spoons for that evening and for the next few days, sometimes for a week. On the ‘better’ days, do not over exert no matter how bad the temptation is. Only do 1 or 2 activities above your ‘normal’. If you must do something/s that you know will take away all your spoons, prepare ahead of time by making the needed arrangements for that time period you won’t be able to (extra helping hands around the house, someone else to pick the kids up or run errands, etc).

  • Tania

    I have fibromyalgia severely in my shoulders and forearms. Nothing loosened them up. I kept having to increase the amount of gabapentin (1200mg/day) and taking an additional muscle relaxer at night.
    I finally found something that does work. I don’t know why it loosens up my shoulders and forearms. It is a supplement (no drugs in it). It has Valerian Root, Passion Flower, Oat Straw, Reishi Mushroom and Ashwaganda Root.
    Until I tried this, I kept codeine on hand to deal with the pain when it got really bad and I couldn’t wait for the muscle relaxer (third one used when needed – cyclobenzoprine) to kick in. The knots in my forearms were especially painful.
    I found that pain does interfere with my sleep. When the pain in my shoulders and forearms was reduced to feeling sore, I slept better. I even have a few days every now and then that I feel rested – for the first time in ten plus years.

  • Clair – nunnybear

    Butch, where are you based? They can’t fire you for being ill surely if you have worked there for 21 years! That is so disgusting I can’t believe it can be allowed to happen 🙁

  • The hardest for me is definitely asking for help. I want to be strong but when I get tired from my Fibromyalgia, I realize that I’m no good to anyone unless I rest up. Thank heavens for my wonderful husband!

  • Butch

    My name is Butch. This past year has been the roughest of my life. Recently though, I have been so fatigued that I might lose my job of over 21 years. I am single, so that means my apt,my insurance, everything. Not really sure what to do, where to go. Anyone have any suggestions. I would glady appreciate it. My email is [email protected]

  • Judy

    Because of severe Lupus Flares, I have nerve damage in both legs and feet. So there is never any days without pain and pain makes you tired. So I get up early…do a little bit, rest a bit more, do a little and rest a bit more…. It’s get’s me through the days so that I get my chores done. I have had to learn patience that I cannot knock out in five hours what I use to could do in one. My pain at this time is not controlled by narcotics by choice, I use Neurontin and Curamin, so I live with a pain level of 5 or 6 most of the time. This is comfortalbe management for me. I want the NARCS to work when I reach the point I will really need them, and I don’t like the way they make me feel fatigued. I make sure I am in bed each night at nine… I can watch tv or read, but my body is resting. That is how I am coping. I am 58 with SLE and BiPolar 1

  • I find that with the fibro pain and numbness keeping a written journal is impossible. Instead, I try to use twitter at least once a day to track what I’m doing, how I’ve slept, and levels of pain, numbness, and energy on a scale of 1-10. (I use a me specific hashtag, so those posts are easy to find and follow – #__meds, and I also get an email copy of posts every day).

    My twitter helps me keep track of changes when I’m the walking lab rat too (which is all too often due to co-morbid conditions). I’ve learned when new medications or supplements are added, make sure to add them one at a time and keep close watch over changes – every time the docs have added batches of new stuff one or more of them is a no-go for me.

    I also use sparkpeople to track my food intake, exercise, etc when I feel like I need to (right now, it doesn’t seem to be an issue). There are loads of free tools available for anyone with internet connections, so figure out what works for you if a written journal or dayplanner does not.

  • Fay

    Great comments, but I would like to know what people use for medications
    to help them with CFS?

  • Holly H

    I also wanted to express my thanks to Robert for such an insightful perspective. It really spoke to me and opened my eyes to some things that I need to look at differently in my own life.

    I too struggle with helpful journaling. I don’t mind writing, when I can find time. I just don’t seem to know what information is helpful to record or an effective way to record it without spending hours rambling about my day. Perhaps this would be a good topic for an article?

  • Ami

    I second thee, “people have symptom free days?”. I know what to do without energy. It’s hope thats fading now. I suffered with severe scoliosis and fibro for 10 years now…Anyone else wake up, read these articles and without wanting to, think “WTF? WHERE do you get your HOPE from?” Hope and energy seem so connected to me..I’m happy there are people that can use the thoughts and words of friends to shore themselves up. I just hope they come out with a “hope” pill soon.. I’m done with waking up and cursing God for this crapper of a body…

  • Tanya

    I had my 1st symptom from lupus when I was 12 years old. I am now 34 & at this point the pain is manageable, the fatigue however is not! I transferred to a new job, my mother moved in to help with my son & I have fewer friendships because I couldn’t handle juggling everything & not feeling like I was going to pass out from exhaustion. Just this morning on my way to work, I had to pull over, I fell asleep for a few seconds! I am tired, I’m sure that I’m depressed & feel hopeless because I have consistently done all the tips in this article & nothing works pass 2 months! I do believe I will turn a corner but I need it to happen sooner rather than later! Whew felt good to get that out!

  • Darlene

    I was recently diagnosed with adrenal insufficiency. Another kick to the body that is already struggling with fibro, chronic fatigue, insomnia and complex sleep apnea. Not to mention the COPD and other issues….

    So I have this “mom’s plan-it” daytimer with LOTS of space in it. I have to nap daily and I try to schedule my appointments and my kids’ appointments in such a way that I can get my nap and still (hopefully) have the energy to cook dinner.

    I utilize the crockpot alot. My dad got me a cookbook “Fix-it and Forget it Diabetic Cookbook”. Tremendous. Plus, I have my own recipes I make. It allows me to feel like I’m still contributing, you know?

    I am also getting someone to come clean our house. Not the whole thing, just the living areas. That will make me feel better as well.

    I choose to pace myself; I have found when I push beyond the fatigue that I fall out. Literally. And that’s not worth it to me. Saying no has been difficult, but I’m learning.

    Thank you Robert for your insightful comments!

  • Symptom free days? Seriously? People have those? Where do I sign up?

    I use a couple of apps on my iphone for journaling. I also track all my meds with an app, as well as symptoms. I can export this data and print it for the doctor, for example, or just for my own reference. One thing I love about iphone app-ing this stuff is I can do it in bed with very little effort, so it helps no matter how bad my day is.

  • Annette

    Robert great comments! I know I need to keep a diary of how I’m feeling, etc but really struggle with it. I do great for about a half a day then lose it. Can I ask, how you journal? Is it a book or diary? Sorry to be thick……..I just cant seem to get a hold on it.

  • Linda Burns

    Robert Sloan-Thank you for your words of wisdom, support and intuitive insights. I felt as though you were speaking for me! Awesome writing!

  • westomoon

    Wow, Robert Sloan — thank you! What a great set of suggestions and observations.

  • If you can’t predict when you’ll be able to sleep, often sleeping early or late because you need to sleep more than other people, it’s still possible to base a “bedtime routine” on something that isn’t the clock.

    When the clock doesn’t work, start building up a series of “bedtime” cues that are independent of what time you decide to sleep. For me that’s doing email, surfing the interesting articles I meant to read later, closing the browser on my computer leaving only my journal and Solitaire open, then reading a few pages of the novel I’m currently reading.

    I learned to leave email till last in the day because on days I do it first, I will spend the whole day doing my email. At night, I delete a lot more interesting ads from art supply places, Facebook notifications of comments I already responded to and stuff from mailing lists that I’m currently inactive (but still interested in a few items). Many of those are things that earlier in the day I’d pore over.

    Be careful about spending money online before going to bed. Judgment is going to be cloudy when you’re sleepy. In order to save more, I also moved “windowshopping” to “breaks in my main goal for the day” instead of doing it late at night. I’m more likely to make impulse purchases when fatigued.

    Prioritizing is a necessity – and the patterns of your life are unique to your life. Between chronic fatigue and personal interests and abilities, you have to consciously create good habits where other people can default to what their family did or what their friends do. Often for abled people those are good patterns. But if they don’t fit you, then trying to impose them diminish your capacity to do anything.

    The journal is essential. It’s through my journal that I understood why I get seasonal affective disorder. I get much more depression and fatigue in winter when I don’t get enough sun. Buying a daylight lamp helped.

    Yesterday in a fatigue attack when I really wanted to be working on my Nanowrimo novel, I had half an hour before a “Word War” where I’d get the encouragement of a dozen friends. I was also falling asleep. I stared out my shaded window at a bright sunny day and realized that I might be sun-deprived.

    I went downstairs, took off my shirt and sat in the sun patch like a cat for 25 minutes. I started to feel better. Even though it was immense effort going downstairs, it paid off big time – I was awake and did another chapter in my novel, cheering my friends on in the Word War when we all posted our totals.

    So pay attention to things like the weather, the time of year, external conditions that change in your journal. Sun deprivation won’t be helped by bedtime routines, but sunlight won’t help if you’re really falling asleep because you didn’t eat or didn’t take your meds or ate the wrong food. Sometimes a nap will help – and sometimes when a nap helps, you’ll still make it to bed more or less at the usual time because what you needed was more sleep than other people.

    I grew up thinking diaries were about feelings and social interactions. I read historical ones that went into detail about politics and local events and the interesting situations of the diarist. But this kind of journal is also a tool for exploring the unique ways your body responds to the world.

    It helped me identify just how much climate affects my ability to function, showing me that certain regions in the country are plain stupid for me to live in – like the Midwest with its bitter winters and dramatic seasonal changes. All of the stresses of the physical world that have nothing to do with who said what will come out in a detailed daily journal – the foods that made me strong, even if they aren’t all “healthy” foods for other people. The weather that makes me stronger. The haibts that let me accomplish more during a day, a week, a month.

    And it may also help to identify stressful situations that aren’t obvious. Socializing on a forum where there are a lot of flame wars may not be the supportive, entertaining environment it seems by topic, a marginally less interesting site by topic may pay off better in terms of genuine relaxation or encouragement. It’s very easy to let go of an obnoxious distant acquaintance once identified – and very hard to identify because that person isn’t important enough for you to spend much time thinking of them until they’ve eaten half the day and drained all your energy with their emotional demands.

    There are pointless conflicts in everyone’s life. I learned that I had to minimize mine, watch for them and eliminate them without ceasing to be social. Actively seeking and cultivating supportive friends is vital, it may be even more important. Heck, it can help with dropping obnoxious acquaintances because a friend outside the situation will say “Why are you wasting your time with that idiot? You don’t even like him!”

    We don’t have time for time sinks, inconvenient ways of doing things or tradition for its own sake in day to day habits. We thrive if we consciously understand these aspects of our lives and adapt them to reality. Chronic fatigue can be managed, and the difference between managing it or not is getting a whole new drawer of spoons.

  • Michelle

    Great tips. My husband suffers from Fibromyalgia and I try to be as strong of a support person as I can. He is an amazing part of my life and it is hard to see him struggle. I agree the journaling in crucial. We developed a sleep routine that is really beginning to make a difference but we also changed our bed. We are using a gel topper and a feather topper as well as an electric blanket. Ideally we keep our bedroom at 14 C and the bed at 38 C. Warm our bed on high, turn it down when we go to bed so it is just below body temp when we wake up. We been tweaking the numbers to find his ideal. It feels so good to be able to get a better sleep. Thought I would share.

  • Combo

    Learn to say “No”. Those who don’t understand aren’t friends to begin with. Listen to your body. Rest whenever you can. No one else can feel your pain, fatigue, or body parts that keep “falling apart”…so don’t expect them to understand. Only someone else with an autoimmune disease can comprehend what we’re going through on an everyday basis. Pray a lot.

  • Sammie

    Thank you for the tips, I have Antiphospholipid Syndrome and SLE and i have never tried using a journal to see what i have done the day before that may have made me worse the following day, but i will definitely give that a go now. Thankyou x

  • Bérengère

    Tout à fait exact, d’abord prendre soin de sa santé, ne pas hésiter à demander de l’aide et choisir ses priorités, la maison nickel ce n’est pas important, une bonne ambiance l’est, la famille et les enfants, le reste bien après !!!! Apprendre à dire non quand ça ne va pas !!!! et ne pas faire attention à ce que les gens pensent de vous !!!! Après moi le déluge !!!

  • Jackie

    And the day you spend hours prepareing, cooking, decanting individual meals for the week ahead. Cleared everything away etc. You did it because you felt ok that day, but that evening,you have had nothing to eat as too tired. You then take the next 3 days to get over it……………………………

  • Eve

    I agree with the above comment. I use my energy to get things done I need to get done…like working and earning money. Housework does not fall into the ‘need’ category, as much as I would really like it to be.

  • Learn that your health is more important than a clean house. It was very hard for me to let the housework go, but it was taking too much out of me. Too many nights, I was too exhausted to make dinner … but the kitchen was clean! And because the kitchen was clean, I was in too much pain to sleep, so felt even worse the next day.

  • Tina

    “For instance, on the days that you are symptom free, you can schedule more activities and on those days where you have unrelenting symptoms, you can plan fewer activities.”

    This may be a viable option for other causes of fatigue, but is absolutely the wrong approach to CFS/ME. For us, it’s important to maintain a consistent activity level. Our bodies don’t handle changes well at all.