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!

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..

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!

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.

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.

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.

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!!!

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.

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.

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?

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%.

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.

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).

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 🙁

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]

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.

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?

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!

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.

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

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.

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.

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 !!!

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.

“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.