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Adrienne Dellwo

Low Motivation With Fibromyalgia & Chronic Fatigue Syndrome

By February 24, 2012

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Blog Classic: Sept. 29, 2010

I decided it was time to dust this one off because it's all I can think of to write about today, as I recover from a fun but exhausting weekend trip. I'm planning to use some of the techniques listed below to get myself moving - right after a nap and a hot bath! ~Adrienne

One of the most pervasive and persistent symptoms of fibromyalgia and chronic fatigue syndrome is low motivation. Sometimes it's the result of low energy, pain, fatigue or brain fog, while other times it's just there, all on its own.

It's easy to feel lazy when you just don't have the motivation to do something. This is probably more of a physiological problem, possibly related to neurotransmitter imbalance, than it is outright laziness -- however, when low motivation is the only symptom preventing us from doing something, it's good to have ways to get yourself going.† After all, you might be feeling a lot worse tomorrow, especially if you're beating yourself up for not getting anything done.

I had one of these low-motivation days recently. I was a little tired but not what I'd call fatigued; I had aches and pains but nothing severe; my head was pretty clear; I didn't have a lot of physical energy, but the work I needed to do was mostly mental. I posted about it on my Facebook page and asked what tricks other people had for overcoming these motivational lapses. It got some great responses, so I wanted to summarize them here:

  • Listening to music (which can be therapeutic on many levels)
  • Making up artificial deadlines
  • Starting with the smallest/simplest task, then using the feeling of accomplishment as a springboard to the next one
  • Delegate or recruit help & make it fun
  • Look at tasks one at a time instead of overwhelming yourself with a long list
  • Celebrating each accomplishment
  • Break tasks into steps that can be accomplished in just a few minutes
  • Ignore the list for awhile and do something self-indulgent, to improve your mood and boost your motivation for the next day
  • A hot bath or shower

Remember, these are for the days when your other symptoms aren't your biggest limiting factors! On those days, pacing needs to be more of a priority, and maybe you're wise to ignore that to-do list for the day.

The trick I usually use is starting with the smallest task first. It really helps me get going, and I believe that's for 2 reasons:

  1. It's less intimidating/overwhelming to start a small task.
  2. The feeling of accomplishment from reaching a goal is therapeutic -- it causes a release of norepinephrine in your brain, a neurotransmitter many of us could use more of.

What helps you overcome low motivation? Is it a common problem you face? Do you wish your other symptoms would quiet down enough for this to be a problem? Leave your comments below!

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Comments
September 29, 2010 at 7:14 am
(1) Gary Fredrick says:

The pain killers don’t help either. Between the poor sleep quality and the meds needed to function at all; it’s quite a bit to get motivated and ambitious.

September 29, 2010 at 8:18 am
(2) Brett says:

Yes, though I think there are types of motivation to distinguish. Figuratively speaking, I almost always have the motivation to get up to go out to the car, but it is just turning the key which doesn’t work.

I’ve explained the phenomenon to friends that it is like I have, through no choice of my own, dramatically become child-like–requiring to be entertained in order to sustain attention from step to step. (I wouldn’t put it like this to strangers, since they might think I am using it as a big excuse (unless I qualified it by humbly pointing out some of my past or current accomplishments that demonstrate the contrary), but my friends get it.)

Since studying is key to my work, motivation has become an issue for me in getting through reading even interesting material, not to mention uninteresting material. The “workaround” which I use (and which I’ve always found helpful, but now use it to extreme), is to immediately use whatever I’m learning. I can try to reformulate it in a way so as to prepare materials to teach it to others, make detailed comments and responses within the book I am reading, apply the learning and come back to the study for brief bursts, etc. I describe this as tricking myself into learning, and it’s worked quite well.

September 29, 2010 at 11:26 am
(3) Dana says:

I tried experimental neurofeedback. After several tries I was told that I shouldn’t come back because I couldn’t generate the right brain waves from the back of my brain. Those are the brain waves that should be active when you need to get motivated.

September 29, 2010 at 12:36 pm
(4) andrea says:

low motivation is a constant problem for me and its great to see that I’m not alone… trying to accomplish little tasks first as a start is always good…but there are just so many of thoses ‘bad’ days that it really gets hard to keep positive…thanks for the new tips and keep them coming!!…I’m constantly looking for new ways to deal with the Fibro…

September 29, 2010 at 6:29 pm
(5) Sally says:

I have to have enough sleep to be able to begin to feel motivated and as we know, a sleep disorder is part of fibromyalgia. I have to not expect so much from myself. I haven’t been able to work.

I use a timer to help change the pressure on different parts or groups or muscles and to also change which part of the brain I’m using. I will use the timer to work at something physical for just a short while, then set the timer again to go do something that is more mental in nature, like pay bills or try to organize papers. (I do mean try… I can’t always accomplish this, it is so hard for me due to concentration and memory issues.)

If the timer goes off while I’m doing a task, I just leave it and change activities . I also make myself rest after so many minutes, otherwise the burning and pain shoot up.

As the day goes on, I take longer breaks or just rest . It has taken a long time to give myself permission to rest.

I’m not saying this always helps my motivation. But it seems to help sometimes.

September 29, 2010 at 8:57 pm
(6) Jason says:

Getting and staying motivated can be very tough for those that suffer from chronic and painful conditions. Being in pain for extended periods of time literally changes how the brain functions…specifically the prefrontal cortex.

The “motivational” side of our brain is the left side. The left side of the brain receives the majority of information from the right side of the body. So one way to help increase your chances to over-coming low motivation is to listen to music in your right ear, or wear an ear plug in just your left ear.

It sounds weird, I know, but it can help.

September 29, 2010 at 10:20 pm
(7) abotbensussen says:

I tell myself in the morning; get up, get dressed, get out of the house. It’s not good for you to stay home. Go to gym, mix with people. to be alone is to be a stone. You’ll feel better later, and if you don’t, you can always go home again. Just try it, do the best you can, build your strength from day to day, and remember; speaking with people is part of your recovery.

September 30, 2010 at 3:33 am
(8) Patrick says:

I just wait. I’ll read the newspaper or a book, watch TV, get on the computer; anything. After about one to two hours, I magically feel like I have some energy and much more motivated to do the task I had wanted to accomplish that day. Works every time, and when it doesn’t it’s usually because I need to get more rest that day (my body is telling me something!).

September 30, 2010 at 11:56 am
(9) artypie says:

I tend to tell myself “if you do the washing up and put the washer on, you can have a bit of time to read a crafting book/do some craft.” I then say “if you hang the washing up/do the dryer, you can have a coffee and sit with a sudoku”. Doesn’t always work…sometimes I just say “sod the washing, my head is pounding and I want a sit down.”

October 1, 2010 at 6:24 pm
(10) Karen says:

The suggestion Jason made sounds interesting. I think I’ll try it. I have had CFS and FM for over 20 years and I still argue with myself about wether I am being lazy or tired. Of course I am being tired. Before I got sick I worked 3 jobs, one was as an Occupational Therapist,. I have learned that most CFS and FM sufferers were hard workers and tended to be “type A personalities”. The fact that I never seem to catch up has been one of my hardest hurdles, and I’m still looking for the answer. I know when I feel bad I can’t do, and when I don’t feel so bad, I Have to do. This sucks! I would like to feel ok and actually choose my activity, even a fun one. Some days I promise myself a really good treat if I get up and move. Usually it involves chocolate or pizza. Seriously, I have learned in 20 years that the biggest thing I can do for myself is to not be so hard on myself. I have learned that there usually is another day to get “it” done if I’m really feeling out of it.

October 1, 2010 at 8:21 pm
(11) Anna says:

I, just this week, read a book called “Fibromyalgia: Simple Relief through Movement” by Stacie L. Bigelow, M.A. She has a small chapter on motivation. Stacie writes with candor, and she basically says motivation is a choice: we decide to live with the consequences of either doing or not doing something.

She says using the excuse, “I don’t feel like it”, implies that we are a victim to ourselves. Specifically regarding exercise, she recommends we “take responsibility for your decision to either exercise or not and consciously accept the pros and cons of your choice.”

Tough words, for sure, but this is a behavior change that places me squarely in the center of action or inaction. Without this change, having a boxful of ideas isn’t going to get me anywhere.

October 1, 2010 at 11:07 pm
(12) Shelley says:

My motivation comes from reading Adrienne’s
Newsletters, especially THIS week’s! Great
ideas!
I recently moved to a place that is a
third the size of my last place, so it has been
like moving the contents of a mansion onto
a small sailboat! I HAVE TO keep going,
because I live at a high altitude, and fortunately
the weather is still warm and DRY during the day, but
it’s already down in the 20s at night. I
have put off for years going through all the
paperwork I’ve saved, and I’m paying for it
DEARLY right now! If I can make it into the
shower by 10:00 a.m., I’m THRILLED!
But, it has been quite a challenge to set short-
term goals when I have this GIGANTIC one
Stacked right in front of me! It’s hard not to completely
melt DOWN! And I would give ANYthing to be
able to sleep through just ONE NIGHT!

October 1, 2010 at 11:20 pm
(13) mimaa says:

I was in so much pain this morning when I woke up and started to have such a “whats the use attitude”. I told my husband I literally felt like I was dying. I am soooooo tired of living like this. All i take is mobic cause i am afraid to take the prescribed med, predisone and a malaria drug.

October 2, 2010 at 1:30 pm
(14) Anne says:

It really helps to read all your comments and I appreciate it. I also appreciate Adrienne’s website so much. It surely does help to know I am not alone in this jungle.

My doctor has instructed me to take vitamin D3, 5,000 mg daily, up to 1000 mg Magnesium daily. She prescribed Neurontin 300 mg 3xday which has really helped for the pain and in other ways too–cannot really put my finger on it. She has prescribed Deplin 7.5 mg and I will go up to 15 mg on this and maybe higher. If you are not familiar with Deplin, it is actuallly folic acid and has something in it to facilitate its crossing the blood brain barrier. I hope these ideas might help some of you.

All these meds/supplements have helped very much. My problem is, so many things I have taken help tremendously at first and then quit helping after several months. I wonder if anyone else has experienced this.

I also am endowed (sarcastic, I know) with major depressive episode along with the me/cfs/fms. At this moment I really think I would be better to just withdraw.

October 2, 2010 at 6:11 pm
(15) Pat says:

Does anyone have a consistant problem with being motivated to make or receive telephone calls? (Even if they are casual, fun calls?)

October 2, 2010 at 9:49 pm
(16) Karen says:

This is a great conversation session. I’m very glad to have found this website. Mimaa: If you have CFS and or FM there are many things to try to help symptoms of pain etc. I’ve had CFS/FM since 1991 and early on I took Tramadol. It doesn’t help everyone, but if your’e lucky, it’ll help you. It doesn’t take away your pain, rather it raises your pain tolerance levels. It is not a narcotic and low dosages worked for me for a long time. Anne: I took things and they stopped working too. I think my body adapted to them too well. I keep a list of options for supplements, etc and rotate them every so often. Pat: I bought a speaker phone and for some reason phone calls aren’t such a pain in the butt for me now. Best wshes guys. Does anyone have trouble getting into the shower? It feels like one of the most tiring activities I do. It literally is an all day chore! I used to shower every day before I got sick. Boy, I do miss it.

October 2, 2010 at 10:41 pm
(17) Patty says:

There are so MANY of those kind of days for me now! In the past, I *could* take a pain pill to jump start my morning but no more. This kind of discussion is SOOOooo very helpful to me. I have been blaming myself along with most everyone else that it’s just laziness. What truly puzzles me: there’s sewing just begging to be done and it was my passion for so many years. Now I can’t seem to get “into it” any more. (sigh) Another side effect of this “condition”?

October 3, 2010 at 6:53 am
(18) Margaret says:

Hi everyone who reads this page. In the Uk we seem to be bogged down by stupid medics who don’t seem to know their right from left hands. I’m fortunate that my GP is on the ball, as she will always battle for what is best for me, it’s the consultants who let us both down. Because I’ve so many other health issues , besides fibromyalgia, and have been on loads of medications , I’m now multi drug sensitive.
The only pain killer I can take is paracetamol ( Tylenol in the USA) and it doesn’t work. Hence I live with pain all the time.
Whilst in my local alternative treatments shop the other day
I was allowed a free copy of a “new to me ” booklet about olive leaf extract.It seems to be one of those “too good to be true supplements” but i’m tempted to give it a try.It appears it works for Fibro, CFS/ ME as well as viruses including the Epstein-Barr virus, and retro viruses. If this is really true then could this be the substance we are all looking for ?????? The ISBN number is 978-1-86514-999-8.
It was written in 2000 by Jack Ritchason, ND and was published in Australia. Have a look and see what it says. Is it worth a try or not ??? ( oopps, the title is “Olive Leaf Extract “.

October 3, 2010 at 10:59 am
(19) Anne says:

Thanks so much, Karen, for your suggestion about rotating the different meds. I will try that for sure.

Thanks everyone for this conversation and your contributing to it. Sometimes, and certainly this weekend, even my husband is making statements like “you don’t know what you want, one minute you’re this way and the next minute you’re another way”. He doesn’t want to talk with me about any of these problems. He just says he has no answers. It’s as if he’s saying he wants nothing to do with it and I cannot blame him.

Yes, Karen, a lot of days I have trouble getting myself to take a shower. Patty, I, too, have lost interest in most everything and, after all the help I have received in my life, I should be able to work through this but I cannot so much of the time. Pat, I seriously dread phone calls most of the time and a lot of the time I just do not answer the telephone.

I know there are ways to defeat these negative issues and I want to be more encouraging for all of you. There is help and we just must concentrate on the positive no matter what. One thing really rang a bell with me while reading Adrienne’s message and that is regarding how important listening to music is for me. I plan to address that immediately. Thank you all for being there.

October 3, 2010 at 6:01 pm
(20) linda says:

This is such a relevant topic today. I am battling severe bronchitis right now, so you can imagine the extra pain I endure when coughing non-stop. Hot showers help—long ones. Steam loosens my constricted air-ways and some muscles.

Caller ID is really important for me so I can decide if I want to talk to that person. Seems the only phone calls I can easily make are to my mental and physical health care-givers. Some weeks, these are the only people I talk with.

The limits of my body have contributed to quitting one job, and now it looks like the one I began 2 weeks ago is also too much physicality. I’ve become a foster grandmother to 3 & 4 yr. olds at a local day-care center. The constant up and down from floor to chair, pushing a young one on a swing, kicking a soft playground ball to another child certainly do play havoc with the body. And if I can’t do these things, then it seems really silly for me to be there as a useless lump on a log.

To continue health insurance, I need to earn a minimum of $65/month. Not many hours, but I’m not having any success in finding something I can do.

My motivation is truly gone if I am not forced out of my house/nest to be a responsible employee for some part of every week.

Oh yes, I also have battled major depression for 20+ years. Pain=depression=pain=depression, well, you know.

I’m so thankful for Adrienne’s role in my life, and yours.

October 3, 2010 at 7:09 pm
(21) Anne says:

Linda, thank you for your response. I agree with you that the job with the children surely is too much right now. I love the 3 & 4 year olds and I did have them in a pre-school setting years ago but I believe that would be more than I could handle at this time.

I had to quit my job of bookkeeping about 7 years ago because of cfs/fms. I think one of the worse parts is that it seems no one really believed I was ill. That is so humiliating to me.

I hope and pray that the bronchitis will leave you right away. That stuff is wicked, I know. I have had it more than I like to remember and it sounds like you and I both have the respiratory allergy problems, maybe. I still take allergy shots for mine and have asthma inhaler and it has really helped me. I hope you don’t have asthma.

I’m very glad Adrienne is here for both of us also!

October 3, 2010 at 11:07 pm
(22) pat says:

Karen, Good suggestion about the speaker phone. I have started using it with my cell phone. Hopefully it will help. By the way, I too dread the shower. However, I attribute it to my ocd. I’m afraid if I don’t keep the shower to 5 min or less, I will be in there all day.

Does anyone out there have ocd along with FMS? In researching, I think the low seratonin is a definite correlation between the two. Have had ocd since very young and fms since 1997. FMS may have been earlier, but not diagnosed until 97.

October 3, 2010 at 11:31 pm
(23) pat says:

Anne, I’m so glad to hear that I am not alone (hating to answer the phone!) My husband does not understand this aversion for me and I too feel like I’m being lazy when I don’t answer. However, it truly is not laziness. I absolutely dread answering or making a call. Procrastination is my middle name when it comes to this. Then the guilt starts!

I think part of it is that I’m wasting precious time. That when I feel energetic, I should be doing other things that are more important, cleaning, bills, shopping, etc. After trying to get these things done while fighting overwhelming fatigue, I’m just tooooooo tired to face the phone calls.

I think Karen’s idea about a speaker phone will help. At least I hope so!

October 3, 2010 at 11:49 pm
(24) Anne Turbett says:

Pat,I think Karen’s idea about the speaker phone will help too. I plan to really rely on that tomorrow.

I declare, Pat, while I read your comments, I feel like it’s me talking! I’m so thankful for this site and for Adrienne! It is sooo soothing and pleasant to hear from you. Thanks.

October 4, 2010 at 8:29 am
(25) Karen says:

Hey there! I took a shower last night! I made it my one big activity for the day and somehow it worked out. I didn’t worry about drying shower walls, vacuuming, etc. I was a neat freak in body before I got sick, now I’m one in my mind only! I’m going to try again in a few days, hope I can convince myself again. So. big yes to Pat on OCD and FMS. My OCD started in childhood but really burned bright during times of big stress like my divorce and my trying to get a doctor to believe I was sick and not crazy. I think it kicks in alot now because I want to clean,etc. and physically can’t. Pat, the serotonin conection is interesting. Do you take something for it and what? Margaret mentioned olive leaf extract and I am going to check it out. Does anyone know what an ISBN # is? This has been one of the best disscussion groups I have been in. We all sound like we are very in tune with each other. Does anyone seem to have more energy at night rather than daytime? I try to stick to a daytime schedule, but I really do more with less pain after 8 or 9 pm. Thanks to you all for the great talk and suggestions. And thanks to Adrienne for making it possble.

October 4, 2010 at 9:32 pm
(26) Katherine says:

This truly is a good discussion group. I happened upon it and can relate to so much that is said. A couple of things, I recently (finally) got around to purchasing a book, Fibromyalgia: Up Close & Personal. It is very helpful abt. so many aspects of FM. Also, similarly to Karen, I too tend to be more motivated and/or get more done in the evening. I think it takes me that long to get warmed up after the soreness that a restless sleep brings! I don’t know….

October 5, 2010 at 8:27 am
(27) Margaret Golby says:

Hi Karen, An ISBN is a number written, inside beneath the publisher’s info and is often found on the reverse side if the dust jacket. Iit is an international book number and is one way of tracing a book. Give it to your local book shop staff and they should be able to find the book fron these numbers. If I want a book I often put in the ISBN on the search page and it should be enough to find the book for you. . Hope that helps.

October 5, 2010 at 4:03 pm
(28) Pat says:

I agree this discussion group is excellent! The best thing is knowing that other people feel the same way. It’s great to be able to talk (write) about the way I’m feeling and NOT get a strange look from someone.

I too have a hard time getting up in the morning. Regardless of when I go to bed (7, 8 or 11 pm), I still can’t get up. I’ve had days where I’ve slept an entire day and still was fatigued the next morning. However, I do hate going to bed at 7 pm, etc. because I do feel more energetic at night. One note: I have never worked at night, so I don’t feel as though this may have contributed to sleep “confusion.”

I did find a book called “Adrenal Fatigue, The 21st Century Stress Syndrome,” written by James L. Wilson. Yet another syndrome that may be related to FMS and other syndromes. It specifically talks about the phenomena of not being able to get up in the morning and feeling more energetic at night. This is one of the reasons that I am trying to see an endocrinologist. You will love Chapter 5!

Unfortunately, like FMS, not many doctors subscribe to Adrenal Fatigue. If you decide that this may be contributing to FMS and you go to the dr., he/she may not be very receptive. He/She may test for Addisons Disease, but this is not the same as Adrenal Fatigue.

Best quote: “The people may appear to friends and family to be lazy and UNMOTIVATED, or to have lost their ambition, when in reality quite the opposite is true; they are forced to drive themselves much harder than people with healthy adrenal function merely to accomplish life’s everyday tasks.” (Page 9)

God’s blessings on all of you!

October 8, 2010 at 11:41 am
(29) Anonymous says:

Interesting article but I have to point out a several flaws:

“Sometimes it’s the result of low energy, pain, fatigue or brain fog”

1) If you have low energy then you simply can’t do the action or activity due low energy, not because you lack the motivation.

2) Pain? Feeling the pain/increasing your pain isn’t worth doing the activity therefore you don’t do it. You make a rational decision that the excruciating pain isn’t worth it. But you may be still motivated to accomplish that goal, or at least treat the pain in order to accomplish the goal.

3) Brain fog isn’t motivation. It’s never caused me loss of motivation. Again I may choose not to engage in an activity because brain fog would ruin it, but that’s not the same as not having motivation.

October 9, 2010 at 2:50 am
(30) gail says:

New to the blog…have had FM/CFS for 15yrs. of course it
was not diagnosed as that at the time; DEPRESSION. Yes, I have depression, but what about all the other symptoms Thank goodness the “light” has shined on the medical field. My Dr. is an Internist that uses alternative medicine (took years to find someone listen to me and not the test results) She does testing average Dr. does not…found I am deficit in Folic Acid (double genetic fault=both parents) stress depletes folic acid what little my body produced stress depleted. Now take CERIFOLIN NAC (this is a medical food of Folic Acid and NAC combined) works wonders, METHYL FOLATE, SamE (helps brain fog and depression) Tramadol for pain, PRISTIQ (depression), different supplements and vitamins. THAI massageis a must for me…yoga,massage,
stretching all in one treatment with emphasis on massing the length of tendons,ligaments,muscles; NOT rubbing into them
Some days I sleep 18-24 hrs, but normal is 12hrs. Also do
better in the afternoon/night (Vampire hours) My husband does not understand nor wants to, refuses to read or learn. After 31yrs. of marriage he has left me, children grown, alone in very large home some days it is difficult to go from bedroom to kitchen.Can’t work due to the uncertainty of exhaustion, flares, etc. don’t know what I am going to do for income. Have read some people are on GOV. disabillity how does this work and how do I go about inquiring? Worried I will be “bag lady” in coming years
Self employeed for 15 yrs. Sad, lonely, stressed, then pain.
Prayer does help for me!

October 12, 2010 at 10:44 pm
(31) Karen says:

Thanks Margaret for the ISBN info. I had to go out twice this week. Tell me if you all know this practice: I have to rest 1-2 days, go out and get as many errands done as possible, go home and keep moving , because then, the “third day out” kicks in. This is when I absolutely collapse the 3rd day after I have been out. It always happens, no matter how little or how much I did. I then have to do pretty much zero for 1 or 2 days because I have to go out again (Sat). So now it is Tues nite and I’m into 3rd day out and planning my next needed activity. I also have to hope for no surprises, like headaches, low grade fevers,etc. With all the strategic planning needed just to do normal everyday activities, it’s a miracle that I can just maintain. Also, most of my activities are controlled by an “on/off” switch. My dad used to suggest maybe I could do more if I broke things into smaller tasks. In theory, fine, but in my real life, no way. If I don’t finish things and stock up on supplies, what happens when my symptoms flare up and I can’t get to that next needed “smaller task”? I don’t have anyone to do for me and I can’t afford to hire anyone. So I have to get it done all at once as often as I can. I think my “low motivation” comes from my frustration at the reality of this illness. I think Pat hit the nail with the quote from the suggested book on adrenal fatigue. Thanks Pat, I’m going to look for it. My brother died of cancer at 44 and my illness will never kill me, but as I mourn him with all my heart, I still mourn for myself. Somedays I can’t stop crying when I think of the life I did have and how much I could have done with it if I hadn’t gotten sick.

October 13, 2010 at 9:50 am
(32) Dana says:

I think it’s hard to accept the condition because every action is such a struggle. How can you move on with life when you feel like you are stuck in quick sand? OK you know you are not going to sink but you also realize you are not going to get out either.

October 13, 2010 at 3:40 pm
(33) Karen says:

Amen Dana!

October 15, 2010 at 8:01 am
(34) Joyce says:

I stopped all the pain medication that the pain management doctor was giving me. I felt stoned all the time. I actually checked myself into rehab to get off of all the meds. Now I see a rheumatologist, get trigger point injections of Lidocaine, I have Lidocaine patches and I take over the counter meds, like tylenol, Advil, etc. The damp and cold weather kills me and so does the humidity. I have learned to take it one day at a time. I do what I can do.

October 16, 2010 at 7:16 pm
(35) linda says:

yes, Karen, it is hard to keep going day after day, pain-filled, exhausted from hurrying to do all those little things when the body allows for it–lots in one day, then paralyzed for 2 days. I was diagnosed only 1 yr ago. Can’t imagine myself dealing with all of this as long as most of you have. I also am alone and can’t afford hiring someone to help. thanks to you all.

February 11, 2012 at 6:50 pm
(36) louisa1958 says:

Karen, You mentioned that showering seems to be the hardest, an all day event. I have the same problem. I went to lunch Friday with a friend, all the while having a bad flare, and I COULD NOT get into the shower. I try and try to tell myself that if will feel good, but the effort is sometimes not worth it. At least I did do one load of laundry so that I had clean clothes to wear.

February 24, 2012 at 9:25 am
(37) Kathy Higgins says:

So glad to meet others so I know I’m not alone. I suffer with fm and I have problems with my bowels and urine. I’m tired all the time also. I’m no longer able to work so I’ve gotten a lawyer and am now in the process of getting disability. I’m almost 60 and I’ve been working since I was 18. So nice to hear others stories!

February 24, 2012 at 10:10 am
(38) Rachael says:

If you are “running on empty” when it comes to the neurotransmitter dopamine, you won’t be motivated to do anything. Scientists are beginning to understand the motivational workings of dopamine, which is the common neurotransmitter whose absence lowers drive and ambition. No dopamine equals, no fuel to make pleasure/rewarding, pain-killing endorphins.

Omega 3s found in fish oils and protein-rich foods that contain tyrosine help to raise dopamine levels.

Foods high in tyrosine:
http://www.dietandfitnesstoday.com/foods-high-in-vitamin.php?nutid=509

February 24, 2012 at 1:58 pm
(39) Janice says:

I have a lot of trouble with that. I also have what the doctor calls “idiopathichypersomnia” excessive daytime sleepiness, a second doctor said it was “true narcolepsy” because it fit the definition but because I didn’t hit REM during my sleep study, I can’t actually be diagnosed with narcolepsy. So I have added trouble. I usually find a show that I know won’t annoy me but I don’t actually have really watch. I find when it is totally quiet, I totally zone into anything. My ability to concentrate on a task is very difficult. For what ever reason, when i watch my shows, the “commercial breaks” (watch them online) don’t come up and its completely silent I start to drift, as soon as the show comes on, I like, snap back to reality. (Ive read a bunch of your articles and I absolutely love the way you explain things. I often reference your articles to explain the difficulties of dealing with these two evil best friends. Keep up the great work, I look forward to more. and thank you for sharing your experiences. It helps to know we aren’t alone, even if we don’t know each other. Just to be able to say “im not the only one” or “finally someone who gets it” Again, thank you :) )

February 24, 2012 at 1:59 pm
(40) Melissa says:

OMG! I so needed to see this today. I thought it was just me who couldn’t seem to get motivated…even to the pt that I will go without eating because it is too much to fix something. I too feel better at night and have more energy. MUSIC reduces my pain and helps with my mood and my family really doesn’t understand that and they think it is bull. I never get decent sleep and am tired all the time. I have been told I am ocd but I don’t think I am bad enough to consider it that I just like things to be clean and tend to wash my hands a lot. I do have a type A personality in that I am a neat freak and a perfectionist. I have been feeling as if maybe I was just lazy somewhat but I used to work like a dog and push myself to the limits. My vit D level and potassium levels stay dangerously low. Pretty much can relate to just about everything said in this blog! That alone gives me hope that it’s not just something wrong with me. I also have a high tolerance for pain meds but can not function at all without them. I did read an interesting article not long ago saying that they discovered that the opoid receptors in people with fibro only accept a small portion of the opiates actually taken. It is like they are blocked some how from reacting to the pain meds causing a higher level of pain and dexreases response to pain medication.

February 24, 2012 at 2:00 pm
(41) Cindy says:

It was good to read through all the comments. I started a nonprofit before I was diagnosed and now have trouble even volunteering there. Seems my stress level goes up the minute i walk in the door and we all know what stress does to fibro symptoms. I don’t know anyone with the disease and reading all of your comments makes me feel ‘normal’ in my un-normalness, if that makes any sense. It obviously doesn’t to the spell-checker. Thanks for being here, folks. We can live with this disease and some days we can even live well. I have been for 15+ years and I think I can make it through another 15+, God willing!

February 24, 2012 at 2:28 pm
(42) maria says:

I disagree here because as with depression,low motivation is also a symptom that not every fibro patient has,i am totally bed reidden with hardly energy to make it to the washroom and sit in bed to eat meals but on the inside am highly motivated ,i just want energy to be able to jump out of bed and do everything i want,and its this motivation tht keeps me going on,,even while typing now, my eyes are blurry,feeling like falling to a side bad migraine but I DONT WANT TO CURL UP AND DIE.

February 24, 2012 at 3:13 pm
(43) Karen C. says:

I have been suffering from a host of different illnesses, the latest being fibromyalgia and chronic fatique. I have recently started a warm water program at the gym, and believe that this is helping my pain, low energy, and low motivation. There were days when my husband would come home for dinner, and I was still in my pajamas, sound asleep in bed. I had slept the entire day away and had tremendous guilt!! Thank God he is understanding and compassionate. I was so overwhelmed by housework and chores, that I just gave up. The stress it caused me was intolerable. It was like I had turned into someone I didn’t even know! Now, my blood sugars and blood pressure readings are starting to return to a normal range, I have more energy, but I have to take it one day at a time. Some days I know I just have to stay home and take it easy. But the warm water therapy has REALLY been a godsend to me!!

February 24, 2012 at 3:19 pm
(44) Linda henegan says:

I have the same issues with the phone, hate answering and put off making calls. I also find taking a bath exhausting and have to force myself. I hadn’t heard of the low motivation problem before and have been castigating myself for laziness! I function better in the afternoons so go back to bed about 9am and then try and do stuff later. Thank you so much for the discussion.

February 24, 2012 at 3:46 pm
(45) shastadaisy says:

I truly have good intentions about doing things that need to be done, but sometimes it’s just getting them organized in my mind. I work an 8-5 job. I leave at 6:30 am and don’t get back home until 6:00 pm. I’m constantly thinking about things I need to do around my condo and make all these plans about what I’m going to do and then wind up doing nothing. Thank goodness it’s just me that has to put up with my inability to get motivated. Growing up I was programmed to clean the house thoroughly every Saturday. Not just make the beds and sweep the floors, but litterally pulling the refrigerator out and sweepig and moping behind it. My mother was a tyrant when it came to cleaning. For the past 12 years I don’t have the ability nor do I have the desire to clean. Sometimes I sit in my chair and think about all the stuff I need to do. I know if it doens’t get done, there is always tomorrow. So I don’t stress over it.

February 24, 2012 at 3:46 pm
(46) Alice says:

You can’t believe how shocked I was to read that some of you, like me, absolutely dread making phone calls! I thought I was going crazy or truly lazy! Ironically, I worked as a switchboard operator every day after school in high school, and in some summers during college. No problems then!

And a big fat agree on the shower thing–for me because my pain is worst by far in my arms, and to have to hold them over my head while shampooing and rinsing sucks.

Peace y’all!

February 24, 2012 at 4:58 pm
(47) Pat says:

I really put off phone calls too. I used to like to talk on the phone, but now don’t even answer it. When I talk to my sister, she really drains me because she tells me of all her aches and pains with arthritis and I never get to tell her how I feel. She wouldn’t understand because I am the baby sister and I am so much younger than her. I am pretty good from 10 a.m. til 2 p.m. then I need to rest or I will crash at 4 and won’t be able to do anything the rest of the day. I don’t know how anyone can go to work full time with fibromyalgia. It takes about 2 hours to get moving in the morning and then by 2 or 3 p.m. drained.

February 24, 2012 at 5:37 pm
(48) Cindy says:

Motivation is a tough one.
My routes is,
- Get a cup of coffee, sit in bed for 1/2 hour
- take my pain medication, by the way I rotate hydrocodon with ultram every two weeks.
- do stretches and light weights 20 minutes
- meditate 20 minutes
- take a 45 minitute walk every day.
In between these things I do my chores. I find that if I do all of this I have a better day.

February 24, 2012 at 6:20 pm
(49) JennyG says:

Wow. What a relief to read all of your comments. Thank you, Adrienne! Your work brightens my Fridays (what a perfect day to get your newsletter… Right as I’m making it through another week…).

As far back as I can remember, I have lacked motivation to some extent. I beat myself up regularly and am constantly searching for the line between FM and laziness in my daily life. I’ve also always had a lower amount of energy than most people around me. So for me I’m also always wondering where my personality/tempermant/personal “set speed” stops & the illness starts. Then I remind myself that I did a beautiful job caring for my (now) three teenagers when they were little ones. And how I earned a BS in Nursing three years ago because I desperately wanted to be a nurse… And how enthusiastic my spirit was until FM…. And then I’m ready to go sit on the couch for three hours and be perfectly happy doing nothing! :) (Forget phone calls. I avoid them whenever possible!)

I do work as a nurse, but have gone from full time right out of school to half time now. I, too, hate mornings & need awhile to “warm up” each day. As someone else wrote, I HAVE to keep my little nursing job (which I love once I get showered, put together, and navigated there) so I’m forced to be out around people, which in small doses is so good for me. My tolerance for being out of my home is fairly low because my systems all get overwhelmed & I start to hurt all over … which brings me back to the question of is it me just being easily overwhelmed by life as I have always been, but now it causes me physical pain? Has my temperament created my illness, which implies I could have done something to avoid it? I will always wish I could have been a dynamo– but I am learning to better accept who I am, to spend less precious mental energy beating myself up, and to get a handle on the FM. Thank you so much for this discussion!

February 24, 2012 at 6:30 pm
(50) valerie says:

Cannot even believe I am reading about the telephone scenarios. I never would have thought it was a fibro thing. I DO NOT call anyone. I have alienated my sisters because I won’t call them. I just can’t. I tell people that if they call me I will talk but I just won’t make the call. I was so much a type A personality but now I am like a recluse. Motivation is at an all time low. Doing small things help me get going sometimes. I do love to go for a walk in the morning, but its winter. Love this newsletter, it is my lifeline.

February 24, 2012 at 7:33 pm
(51) barb quester says:

i have moderate CFS and FM. Nearly every day i make myself get out of bed, get into the shower, dress, take my meds and go out for brunch. it is a lonely existence but unless i am really really bad, it’s what i do every day. i guess it is motivational but then when i come home i don’t do much else unless it’s like doing the bills (something i HAVE to do) or vacuum. etc.
i have pets so even on my very worst days i have to get up and take care of them. i am glad to have them. i don’t know what i would do without their company. but then there are times when i have to take them to the kennel for a couple nights of uninterrupted sleep, as unrefreshing as it may be it still helps somehow.

February 24, 2012 at 8:08 pm
(52) Gregory says:

When i feel like this. My Doc always says it’s my depression. There are times that i’m not depressed, and i still that way. Then i get depressed when he doesn’t seem to listen to me..He says it’s more mental then physical.. And i just can’t seem to get him to understand the physical part.And when was sent to test everyone says it’s not that bad. Well why do i feel that bad. So there always doubt there. I can’t prove anything. The only way is to have them live with me. And just see my daily life..greg

February 24, 2012 at 8:33 pm
(53) cfsboston says:

I have never faced low motivation. Although severely challenged by my acquired chronic immune deficiency syndrome, I remain a highly motivated individual. What I do have is an immune system that is so profoundly suppressed (and fatigued) that it is incapable of allowing me to move.

When my energy allows, I find the most therapeutic thing for me to do is ACTION (i.e., letter-writing to politcians, scientists, blood banks, research facilities, etc.). One year I wrote so many letters that I got my senator to forward my case to the Head of the CDC and the NIH. My blood has been to CDC-Atlanta twice, and facilitiated by the United Nations I have been out of the USA twice now to meet with Nobel scientists.

I will not go quietly, and it has nothing to do with lack of motivation.

February 24, 2012 at 9:45 pm
(54) Sandy Brown says:

I find that if I eat totally organic soups this really helps me feel better and when I feel better I have more motivation. However some days I just do not even have the ability to cook anything. Sometimes I feel trapped inside my body. It is hard to explain this feeling but it is like there is a big road block in front of me all the time. I guess maybe this is brain fog. I have also found that being on bioidentical hormones really helps my energy level. I really have to pace myself though because sometimes I have a ton of energy and just want to go crazy doing physical things. I have to really watch out and don’t try to do all these physical things in one day. It is a hard to balance my life because I use to be so very active. I am beginning to realize that I just have to let some things go and accept that they are just not going to get done and be o.k. with it.

February 24, 2012 at 9:53 pm
(55) Ava says:

Wow. I was so suprised to see what people were saying. I always thought it was just me, since these things are not things you would associate with Fibro. I’m talking about taking showers – I used to do it 2 to 3 times a week when healthy, now I’m lucky to get 1 in a week. I also do not like calling people, never used to be a problem in the past, but is now. If they call me, I have no problem, but I just can’t seem to get myself to call them even though I keep thinking about it. My motivation to get things done simply stinks. I barely do anything more than sleep 10 to 12 hours (sometimes more), feed my pets (although they need baths & I can’t seem to get the energy & motivation to do that), watch TV, go on the internet and read some. I’m also lucky if I get to my laundry more than once a month. Luckily I have enough clean clothes to last me. I get so fustrated with myself because there is a part of me that really wants to see these things get done, but I just can’t seem to get the energy & motivation to do it. I know it is because of the Fibro and my depression, but that still doesn’t relieved the guilt. When I think back to how much I accomplished on a daily basis, which included working full time, prior to having Fibro, I just feel so bad about myself and guilty that things are not getting done. My house is total mess & so is my life with this illness and its corresponding co-morbidities.

February 24, 2012 at 10:33 pm
(56) JudiP says:

I just wanted to comment about making phone calls: I hate it! I have a list of people I need to call just to chat and see how they are doing. I keep putting it off. I appreciate the hints about getting motivated. I need all the help I can get in that area.

February 24, 2012 at 11:32 pm
(57) Beth says:

Thank you for reposting. I am literally never motivated to do anything that doesn’t HAVE to be done. One thing is it’s hard when you don’t work because you always can do it tomorrow. This is a never ending battle for me.

February 25, 2012 at 12:27 am
(58) Aliaus says:

I am so thrilled to see this discussion today. I do lots of research on fibro but have never come across this topic. I thought it was me (seems a lot of us did), faced enormous guilt and am my own worst critic. I dont know how some of you manage to work and be a good parent too. I was in management my last 2 jobs prior to my fibro, now I can sometimes barely manage myself. I have tried to explain to family and partner about lack of energy and that you do often push yourself hard to achieve small results. It is often a celebration for me to achieve something wheras others take it for granted and dont see why I am so excited. I used to do a lot of photography and loved it, I was professional at one point. Now if I get excited about picking up a camera I need to get motivated again at a later date to be create and edit the shots. II find it impossible to be creative when no motivation exists. Last year I started on Tyrosine to try and help the fog which it does to a degree, it also gave me some improved energy and motivation (1500mg daily) and I was able to start to catch up on things that had been left for the 3 years since fibro started. I havent caught up yet and its very very slow progress as you are still trying to manage everyday things today which can sometimes be more than enough, but it is moving. It is interesting to note that “cfsboston” has extreme energy loss and fatigued immune system with AIDS but still has wonderful motivation. It goes to show how our chemicals in our brain can make that difference between just our body not working right and our whole being at times.

Thank you everyone for your suggestions, and to Adrienne for putting this up.
Hugs all round!
Ali xx

February 25, 2012 at 9:28 am
(59) Rachael says:

In this non-stop world we live in, we have all been made to feel guilty if we are not on the go 24/7. Realize, it’s OK to sit back and smell the roses, put things off, contemplate life once in a while and restore ourselves, after all we are not machines. Being more yourself is the key to a happy and fulfilling life. We were not all mean to be “energizer bunnies”. Feel content in not getting it all done because you have finally realized you canít and maybe youíre not supposed to. Always remember, we are human beings, not human doings

February 25, 2012 at 11:33 am
(60) Eva says:

I am glad that I’m not alone feeling lazy and lacking in motivation. Yet, I still feel guilty about all the stuff I “Should” be doing. Housework–yuk. Once I was a clean and neat freak, but no more. I have to be pretty grossed out before I make the effort.

And the telephone…I usually let it go to voice mail, and if it doesn’t, then it couldn’t have been important!

Gentle hugs to y’all…one day at a time…

February 25, 2012 at 12:40 pm
(61) Joan says:

I don’t think it is helpful to generalise from your own individual unique position Adrienne to everyone with ME and FM – especially about something as emotionally loaded and judgemental as telling people with ME and FM that they lack motivation! That’s pretty cheeky, imho…..

“One of the most pervasive and persistent symptoms of fibromyalgia and chronic fatigue syndrome is low motivation.”

Come on Ė how can you really think this?

I find the exact opposite in pwME and FM. Often patients are chronically demoralised and upset that they can’t do things that they once did due to PEM, flu symptoms, neurocog deficits and flares in pain. There is a world of difference between low motivation and being demoralised and unable to do things due to disability and sickness.

pwME/FM can label themselves as ‘lazy’ ‘ lack motivation’ etc due to undue criticisms from family members, co-workers, doctors, society in general etc. Using “should” statements to beat themsleves with – hardly helpful….

Labelling and identifying oneself as having lacking motivation as one of the primary symptoms of both these conditions is pretty disingenuous. Labelling a person (i.e. another) or self-labelling and viewing oneself in such a harsh judgemental way is, imho, hardly likely to engender good mental health or foster a robust ability to care for self and manage chronic ill health.

February 25, 2012 at 11:02 pm
(62) Lee Ann says:

I find if I have the energy, I can get the motivation. I have narcolepsy also, so I have a prescription for dexedrine. If I take a dexedrine, wait about a half an hour, i can usually get done what I want to do. usually. Although today I took one, and sat on the couch and watched TV most of the day. So it doesn’t always help. If I need to mow the lawn, or vacuum the house, I usually take a dexedrine. Of course, mowing the lawn involves sitting on the mower, with a soda in the holder. but sometimes just getting out there, with a hat on is rough.

Until Oct. i was working as a nurse, 24-32 hours a week. That’s all i was doing. I was struggling, doing nothing but working, and my boss had to spread the days out, so I could rest in between. Well, she got tired of that, and found two lies about my work, and terminated my job. I actually breathed a sigh of relief. i had struggled for so long, doing nothing but working and laying on the couch. What a relief. My parents had left me a little money that I had put aside for my retirement, Well, this is my retirement now. Waiting and hoping for SSD, already got a private long term disability insurance started. But the relief is huge! I I definitely get more done around the house now that I am home. and if I plan ahead and realize what I need to do, I can usually get it done. Although right now I have a plant in a cracked pot, the water runs out, the plant is slowly dying, and I haven’t gotten the motivation yet to repot it. How horrible is that?

February 26, 2012 at 5:41 am
(63) beckie says:

hi ev1

i sometimes think the tirdedness is worse then the pain,with pain you can take painkillers,and you almost get use to being in pain,and when you have a young family,you do your best to soilder on,but the tirdedness is just over whelming,ive been to my dr so many times to say im so exhausted i cant do anyhing,and they just dont seem to believe the extent of it,just keeping dr app is exhausting.they always give me prozac which helps with my depressoin and mood swings,but only helps with my energy boost by 25%,i have no family surport,my husband just thinks im lazy,and doesnt undrestand that just getting showered and dressed exhausts me,without the kids to look after and genral housework,it must be so lovely to have a surportive partner.

February 27, 2012 at 5:45 pm
(64) Lise says:

Adrienne,

I have followed your articles for a long time. I use your short and concise articles in my advocacy for ME. However, I find this article Misinformative at best – Harmful at worst. I have had both ME and FM since the early 90′s. In those days little was known about the hallmark of ME which is post-exertional neuroimmune exhaustion (PENE). Lack of motivation is not contributed to ME by literate doctors. If we had MS would you be writing an article about lack of motivation?
In my experience wanting to do too much on a good day is most persons with ME’s problem. Followed by PENE. Current research shows that pushing and crashing oneself leads to progression of the disease of ME. I am concerned for the newly diagnosed and the misinformed.
I am aware of the research which supports exercise in FM. Maybe you would greatly help the ME community by printing a retraction and specifying this article should have been written about FM and not ‘ME/CFS’. I know you are true in your desire to help the community.
You can find further information about PENE from the International Consensus Criteria which was written by a group of 26 experts from around the world about the latest scientific research regarding ME. Here is a link.
http://www.research1st.com/2011/07/25/me-case-definition/
Thank you for your prompt consideration.

February 27, 2012 at 6:41 pm
(65) Kari says:

I have to agree with Lise. I have had CFS/ME for 26 years, and I don’t lack motivation. Today, for instance, I am able to do very little, however, I can make a big long list of things I would love to be doing. I have to stop myself from doing any of them, as yesterday was my day out to do grocery shopping and visit my elderly parents. Today HAS to be a rest day. My body is telling me so, even though my mind is telling me it would be much better use of my time to do some clean up in the yard, walk the dog, or cook something for dinner.
I do find some of your suggestions to be helpful for pacing, which is essential in ME/CFS. But actually, it’s the high motivation & push/crash that is so detrimental to people with this illness. I do not have fibromyalgia, and think perhaps your suggestions are more relevant to that illness.
I enjoy reading your articles, and do thank you for writing about these illnesses.

February 27, 2012 at 10:54 pm
(66) Mary Schweitzer says:

Perhaps this is the difference between fibromyalgia and M.E./CFS. Lack motivation? I used to do the Nautilus circuit. But I could not get my limbs to move. Every activity, the simplest you can think of, took immense concentration and effort. How does an adult forget how to put a seat belt on? I would sit there, staring in confusion at the two ends of tthe seatbelt, until my daughter came out of the back seat and put the seat belt on for me. You lie there, thirsty, and there is water on the nightstand, but your arm won’t obey the command to pick it up.

I am lucky to be on treatment. I spent the entire day on a train 100 miles to New York from my home in Delaware, then a bus, then three hours of infusions, then the bus, then the train again – I left home at 7:45 am and got back at 6:45 pm (my husband drives me to the station – I am lucky to have him, I know). I have to do this twice a week to get better. And I am getting better, but I also have to deal with pain from where I fell when I was so sick, and my body needs time to recuperate.

I have immune defects that led to chronically active infections with EBV, CMV, HHV-6A, HHV-7, and Coxsackie B. HHV-6A and CMV are active in my spinal fluid. That led to encephalitis and neurological dysfunction [encephalomyalitis] plus severe pain behind my eyes and in the back of my neck, and severe headaches. Those are gone, but I still have the myalgias (muscle pain) all the time – that will take longer to heal.

I have friends who are hanging in there, impoverished by the disease, horribly sick with no family to care for them. They cannot afford testing and expensive medicine. How do they make it from one day to the next? They are the bravest people I know.

Motivation?

I don’t think we have the same disease you do.

February 28, 2012 at 2:15 am
(67) Kassy says:

Adrienne;

Your articles are often so helpful and informative but I’m another ME sufferer who finds this one misses the mark. I see it’s pretty old so I’ll add my vote that you update and correct it. If this were a democracy. Which it isn’t. It’s your space. But I’ve got a couple things I need to update on my blog too — I know how it is. We write, we learn, we revise, we learn some more and write again. On we go!

Like Mary, Kari and Lise, I have tremendous motivation. I have two children for whom I would do anything, for whom I want to do everything, and for whom I can usually do next to nothing.

I long to be working for, playing with, traveling alongside, teaching and learning from my two amazing teens. I long for them to have the energy too, to do all the things we used to do before we all got sick.

Think those kids don’t have motivation to kayak, swim, garden, hike, play, dance, socialize, study, and even watch movies like they used to?

What’s lacking is not motivation. What’s lacking is money for research and proper training of doctors so they’ll tell us, don’t push, the way me and my kids did, because you’ll only get sicker.

If we had only known…. coming up on our 5th anniversary of illness and I feel like I am one pure burning ball of motivation, desiring that blazing bright life back.

And on we go.

Thanks!
Kassy

February 28, 2012 at 8:20 pm
(68) Mary Schweitzer says:

FWIW – to those who “lack motivation” to take a shower – that could well be a sign that you have Neurally Mediated Hypotension (NMH) or Postural Orthostatic Tachycardia Syndrome (POTS) (pretty much the same thing) – when standing still for 10-20 minutes, your body miscommunicates and instead of increasing your blood pressure to send blood up to your brain, the systolic suddenly plummets. Your heart beats very fast to try to make up the difference, but if you don’t get down eventually you will pass out.

I have this. I’ve had it diagnosed with different methods, but the best, I thought, was a 24-hour blood pressure cuff and pulse monitor. When I was standing in line for a prescription, I felt horribly uncomfortable – but I know the signs, so normally I would have sat down, and if there wasn’t a seat, well, I’d have sat on the floor. Just then the monitors went off.

My systolic (the higher of the two) dropped suddenly from 120-80, and my pulse leaped from 80 to 120. And THAT is NMH/POTS.

It’s worse in damp heat. So it can be awful in a shower. But since you don’t know what it is, you just know you feel uncomfortable and sort of a sense of panic, too. And you think you’re nuts – but you’re not. You just have a neurological abnormality, and your body is trying to compensate for it.

I have developed the habit of checking my pulse if I have been still too long, and if it’s heading over 100, standing still, i find a way to get down. Period.

hope that helps someone.

March 1, 2012 at 2:08 pm
(69) Diane says:

So happy to hear I’m not alone. I find showering a HUGE EFFORT. I used to shower everyday & now it is such an effort & takes all the energy I have. I love feeling clean but……
Also the phone thing.I’m just too tired to phone people. I think alot of my friends have just given up on me. You really learn who your true friends are with this disease. I have a few but not many.
When I am having a good day I want to do everything. No lack of motivation at all! But most days just to tired , the thought of doing the chore is even tiring. I take oxycontin for pain & elavil for pain, sleep & IBS. Both have given me some quality of life back. I hate being on the narcotics & beat myself up regularly but the alternative is to not have a life at all due to pain. Hugs to all, Diane

March 2, 2012 at 1:09 am
(70) Tricia says:

Rachel hit the nail on the head when she talked about dopamine as it is responsible for motivation and behaviour as well as for movement, cognition and pleasure and reward. The pleasure and reward is what helps us get motivated so you can see how these things are linked. Some may deny that they have a lack of motivation but it depends a lot on the state of their endocrine system as dopamine is not only a neurotransmitter but also a hormone. In FMS and CFS, it is not only the nervous system that is affected, but also the endocrine and immune systems. Hell, it sure aint fair that we have the most complicated illness there is and we are the least able to cope with its complexity.
But back to the endocrine system – the different axes of the endocrine system are all interdependent so when you have your period or ovulate or sink into menopause, your dopamine levels will also be affected. So everyone is different and has varying levels of motivation and ability to perform tasks at any one time (not forgetting that dopamine is also necessary for movement – hey, not only may you not be motivated but you may also not be able to move or find it very difficult and therefore slowly). When my FMS was at its worst, there were many times that I lay paralyzed on the bed trying to will myself to move.
So Adrienne is correct in that there are motivational issues in FMS and CFS, even though in varying degrees and that levels of dopamine have been shown to be low in both these disorders.

Some people may be interested in googling the functions of the hypothalamus as it will show that it is responsible for all the areas from which our symptoms arise. The hypothalamus is considered to be the head of the limbic system, the part of the brain that controls all our automatic bodily functions, including function of all the endocrine glands.

March 2, 2012 at 11:49 am
(71) Rachael says:

Tricia: I don’t think anyone realizes just how important the neurotransmitter dopamine is in the enigma which is CFS/ME and fibromyalgia. Dopaminergic control mechanisms are of utmost importance with respect to pain, sleep, arousal, motivation, mood and the autonomic nervous system. Thought you might enjoy this article. ”

From Parkinson’s Disease to Fibromyalgia

http://www.fmpartnership.org/Files/Website2005/Learn%20About%20Fibromyalgia/Articles/Dopamine.htm

March 3, 2012 at 12:14 am
(72) Tricia says:

Rachael, sorry I spelt your name wrongly. It is wonderful to find someone as deeply into this illness process as I am. Thanks for the great article – I learnt a lot more about dopamine from it. However, the author does not go into detail about the relationship between dopamine and the steroid hormone pathways. Some people believe that low levels of oestrogren are responsible for the death of the cells in the substantia nigra but I believe it has more to do with a lack of pregnenolone which is the grandmother steroid hormone. Pregnenolone is the precursor to cortisol which stimulates the production of dopamine in the brain and as cortisol is at its highest level during the day and starts to decrease from late afternoon, dopamine levels decrease then as well, so I would think that lower levels of dopamine during the night would be necessary for good sleep. I myself believe that it is pregnenolone that is the hormone mainly responsible for good sleep. I have mainly spent my time on learning about and understanding the steroid pathways and only became interested in dopamine when I moved and my new neighbour had Parkinsons which she developed at the age of 20 and is now 63. I spent a lot of time with her and noticed that many of her symptoms were similar to mine. I then did some research and discovered the link between dopamine and the steroid hormones.
By the way, in what form do you take the tyrosine? I have tried a powdered form but do not tolerate it at all. There are many people with FMS who get their dopamine stimulation from cannabis. Do you live in a state where it is available and have you tried it?

March 3, 2012 at 8:40 am
(73) Rachael says:

Hi Tricia: Your research re: pregnenolone. is very interesting. I will read more about pregnenolone’s steroidal properties; being that steroids calm the immune system.

I myself, believe that CFS/ME, like Parkinson’s Disease are both autoimmune illnesses caused by dopamine dysregulation/depletion. Dopamine can be both stimulating and calming; research shows dopamine plays a crucial role in sleep regulation.

Interesting article re: sleep regulation and dopamine: http://news.stanford.edu/news/2001/march21/modafinil.html

Estrogen is a serotonin agonist. Higher estrogen/serotonin levels seem to stimulate the immune system while progesterone/dopamine can have a calming effect on the immune response. Increasing dopamine levels may also reduce serotonin levels. Dopamine also plays a role in inhibiting prolactin which is another immunostimulating peptide hormone.
*****************************************
I take tyrosine in the morning with a cup of coffee. I only take a small dose ( one capsule which I break open can last me five days). I also take a couple of salmon oil capsules. The combination seems to raise my usually low blood pressure and calm my usually fast heart rate (tachycardia). I have not tried cannabis and I don’t think it would be beneficial to me because cannabis can raise serotonin levels (immune stimulating); probably works well for those who are in need of an immune system boost. BTW, I live in Canada.

All the best
Rachael

March 6, 2012 at 3:31 am
(74) Tricia says:

Hi Rachael
Thanks for those bits of info as seen from the point of view of the immune system. It has renewed my interest in persuing my research and I look forward to delving into the immune system where it is relevant to our disorders. Good luck with yours.
I’m in Western Australia.
Best wishes
Tricia

March 6, 2012 at 10:30 am
(75) Rachael says:

Hi Tricia: You might find this article from my collection interesting re: the immune system’s involvement, as to how an over-active immune response can make people feel not only sick (flu-like symptoms), but also cause agitation, anxiety and inflammation.
*********************************
Most of us associate depression with being run down and having poor immunity to infections. The startling side effects of the immune-boosting drugs turn that notion on its head. They suggest that some people who are depressed ( I prefer to say who have an up-regulated immune system because I think depression is actually caused by a down-regulated immune system; in need of a boost, exercise etc) may actually be suffering from an over-heated immune system, and that damping down inflammation could offer a brand new way to treat routine clinical depression, (which I prefer to call an up-regulated immune response). It’s a theory that recasts depression (up-regulated immunity) one of the great plagues of our time, as a chronic inflammatory disease like rheumatoid arthritis.

“For the first time it became clear, “Sickness behaviour is like fear–it is a state that makes the animal reorganise its priorities.” Just as the sight of a predator makes animals release hormones that drive the “flight-or-fight” response, infection triggers the release of cytokines, which make the animal rest and conserve its resources to fight the infection.”

http://biopsychiatry.com/immunesystem/index.html

March 9, 2012 at 1:12 am
(76) Tricia says:

Hi Rachael

I agree with you that depression can be present in both suppressed and overactive immune systems and I believe the common factor here is a lack of progesterone which is the body’s natural antidepressant. There would be a lack of progesterone in both situations as both the oversecretion of cortisol and the undersecretion of cortisol result is what is known as pregnenolone steal where the cortisol pathway needs more pregnenolone than is available and subsequently steals it from the sex hormone pathway leading to an estrogen dominance which in turn creates an even greater progesterone deficiency.

March 9, 2012 at 2:22 am
(77) Tricia says:

I forgot to add that it is not only immune cells that secrete cyyokines such as interferon causing sickness behaviour. Microglia (the special nerve cells that repair and nourish the neurons) also secrete cytokines which I dare say is the body saying that it needs to rest while the nerves are being repaired. There is an increase in the number of certain types of microglia in FMS – astrocytes in the cerebrospinal fluid and Schwann cells in the peripheral circulation. The Schwann cells have also been found to be malformed. It is interesting to note that one of the functions of Schwann cells is to produce progesterone and they have receptors for pregnenolone. There is also an increase in mast cells in the peripheral circulation in FMS which I interpret as meaning the presence of widespread inflammation in the periphery of the body.

March 9, 2012 at 3:39 pm
(78) Rachael says:

Thanks Tricia; great information! I’ve just been reading an article by Dr Ray Peat about MS protein, fats, and progesterone and how excessive serotonin and estrogen cause a relatively uncontrolled production of cortisol. A vicious circle of inflammatory mediators and amino acid imbalance can result.. High quality protein, thyroid, pregnenolone and progesterone tend to correct the underlying pathology. I think we are both on the right track in our research since dopamine and progesterone are related and both can work as immune system modulators, while serotonin and estrogen are also related and can be immune system stimulators.

Here’s the article: http://raypeat.com/articles/articles/ms.shtml

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August 2, 2012 at 3:35 pm
(81) Nancy says:

This is an important discussion. How motivated do you feel when you have a flu or cold ? How motivated do people feel when they are sleepy at 12 midnight? What about when people are in a state of grief over loss
Of a loved one ? Point is : motivation is complex – as everyone has pointed out. Most Fm/CFS people were highly motivated prior to onset.
The shower thing is so true – it is exhausting. The Pacific Fatigue Laboratory looked at oxygen consumption during this activity – it is high in normal people.
We have so many symptoms In so many areas that I keep thinking we must have a problem with a basic process which is affecting multiple brain areas. Interesting- during a trip to Vegas ( at Circus Circus) I woke up at 7 am ready to go. ( normal is noon) Later I heard the ‘rumor’ that the
Casinos pump oxygen into the climate system. Has anyone tried some
oxygen supplementation – even briefly? If we are low on oxygen could this be related to a undiagnosed cardiovascular issue ?

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(82) phil watson says:

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January 14, 2013 at 12:21 pm
(83) Pat says:

Nancy interesting idea about the oxygen.

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