Exercise And Chronic Fatigue Syndrome
Posted by Catherine Morgan on March 26, 2007
Exercise is a very tricky aspect of Chronic Fatigue Syndrome. While exercise is extremely important for overall health and wellness, it can become a “toxin” for a person with Chronic Fatigue Syndrome. That is why it is very important to find that critical “balance” of not too little, but not too much. And, each person will have a different level of what their condition can tolerate. Here is some information I came across today about Exercise and Chronic Fatigue Syndrome……
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picture by © joansheartart
Chronic fatigue syndrome (CFS) is an illness characterized by extreme exhaustion. Other common symptoms include aching muscles, joint pains, headache, sore throat and flu-like feelings. The cause is unknown and recovery can take years. In some cases, people don’t recover and suffer relapses throughout their lives.
Exercise is often a problem for people with CFS because physical activity may worsen their symptoms. Medical opinion has been divided on whether CFS patients should attempt regular exercise or not – some believe that gentle exercise is helpful, while others caution against any form of aerobic activity at all. However, studies recently published in the British Medical Journal and the Medical Journal of Australia have found that patient education on CFS and a graded exercise program can improve CFS symptoms in many cases.
Exercise may not be possible
Some people with CFS, especially in the weeks or months following onset, are unable to perform the most basic activities, such as showering or walking from one room to another. In such cases of extreme exhaustion and pain, the person may be confined to their bed. As time passes, they may feel a little better and attempt regular exercise. However, aerobic activity can cause a relapse of symptoms.
The added problem for people with CFS is that a sedentary lifestyle causes a range of other health problems including muscle wastage, loss of bone mass, and increased risk of obesity and cardiovascular disease.
The lactic acid connection
Lactic acid is a chemical by-product of muscular activity. In healthy people, a build-up of lactic acid causes fatigue.
Research suggests that exercise worsens CFS symptoms because it triggers a flood of excess lactic acid. In some trials, CFS patients were found to produce double the amount of lactic acid than people without CFS, even when taking lack of fitness into account. The researchers stress that more research is needed, but their findings suggest that CFS may be linked to an error in energy metabolism.
The potassium connection
Medical problems that cause low levels of the electrolyte potassium often include chronic fatigue as a symptom. The bulk of the body’s potassium supply is found in muscle tissue, with the rest in the brain, blood and internal organs. A recent study found that people with CFS have less total body potassium (TBP) than healthy people of similar age and weight.
Exercise suggestions
A person with CFS needs a gentle approach to physical activity and should only make tiny increases in the frequency, duration and intensity of their exercise program.
Be guided by your doctor or physiotherapist, but general suggestions include:
- Aim for no more than three exercise sessions per week.
- Experiment to find the type of exercise that works best for you. Choose from a range of gentle activities such as stretching, yoga, Tai Chi, walking and light weight training.
- Stretching seems to be well tolerated by people with CFS. You may prefer to perform your stretching program while lying down in bed.
- Aerobic exercise seems to cause relapses for many people with CFS. If this is true for you, try non-aerobic forms of exercise like weight training with light weights.
- Learn from past relapses. For example, if walking for 20 minutes worsened your symptoms, try walking for five minutes and see how that goes. It may be helpful to keep a diary to keep track of what works and what doesn’t.
- Stop the physical activity well before you feel tired. Pacing yourself is very important.
- Remember that your exercise tolerance will differ from one day to the next.
- Listen to your body – if you don’t feel up to exercising on a particular day, don’t.
- Only slowly increase the intensity, time spent or frequency of exercise when you know you can cope with it. For example, if you can exercise for five minutes without suffering a relapse, try for six minutes.
Also See:
YOU CAN ALSO TRY — GRADED EXERCISE FOR CHRONIC FATIGUE SYNDROME
CHRONIC FATIGUE SYNDROME AND EXERCISE
Educate yourself
People who have a thorough knowledge of CFS tend to manage their condition better and have a more positive outlook. Suggestions include:
- Find out as much as you can about CFS. You could consult with your doctor, physiotherapist or CFS association, read books on the subject, or browse through reputable CFS sites on the Internet.
- Networking with other people with CFS can give you more ideas on exercise. Consider joining a support group. Many CFS websites offer online chat rooms too.
- Set realistic exercise goals and congratulate yourself for any gains that you make, no matter how small.
- Be patient – it may take months or years to slowly build up the intensity, duration or frequency of your exercise program.
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EXAMPLE OF TAI CHI
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THIS IS A 15 MINUTE OFFICE WORKOUT. I thought this would be something that might work for patients with CFS, maybe doing five minutes and then taking a break.
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TIPS FOR LIVING WITH CHRONIC FATIGUE SYNDROME
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carmen said
Does anybody knows of a doctor that treat chronic fatigue in CA that takes blue cross ppo?
kwhawaii said
Dr. Fred Herman — Rheumatologist in Sacramento, CA
He diagnosed and treated me. Good luck!
John Ulyatt said
Could you give me the phone number of Dr Fred Herman?
SOG knives said
Interesting ideas… I wonder how the Hollywood media would portray this?
Stephanie said
Wow what a great article. And if anyone is looking for some healthy meal plans or workout programs This is one of my favorite health & fitness sites. It even lets you track food, workouts, and calories!
How to Get Six Pack Fast said
The style of writing is very familiar to me. Have you written guest posts for other bloggers?
Sandra Rocha said
Hello…does anyone know a doctor who treats CFS and takes insurance in northern nj area? Would really be helpful. I was diagnosed by a Family Practice Dr but there is not much he says he can do for me. I am looking for a specialist perhaps or someone with much more experience. Thanks
bitt said
great article. i am really tired of hearing people say that exercise gives you more energy. it doesn’t if you have chronic fatigue! nevertheless, i still try to keep active by taking 20 minutes walks 4-5 times a week or more if it’s a better week. i’m not at all active like i used to be but i prefer to do a bit than nothing at all.
addicted2coffee said
HI all. I’d just like to say that this post and this site has some great information and support for CFS sufferers. I was diagnosed with CFS 5 yrs ago after getting Ross River Virus from a Mosquito bite. I also had 3 bugs on top of that at the same time, it was then I was tested for Leaukemia due to my high white blood cell count, it then led to my CFS diagnosis on top of all my other symptoms.
My doctor and all the specialists I have seen have all told me the same thing you mentioned here, doing too little can make it worse, as can doing too much, it’s walking that fine line and knowing what you can and can’t do which is what we with CFS need to do. I am currently on anti-depressant medication and pain killers and just walking that fine line.
As for exercise, I live in a very hilly town and I recently bought a Mountain Bike and although the hills I encounter while riding to town aren’t too steep, I find myself very very sore and tired after even the shortest ride at times. I still need to watch how often I ride or walk etc which comes back to knowing how far you can push it without overdoing it. The days I don’t feel like I can do much, I don’t.
What really annoys me is how some people who don’t have CFS or don’t understand it, say that they know someone who has fatigue or who has had CFS and they pushed themselves and got over it so why don’t I? … if only it was that simple for everyone. There really should be more awareness to CFS so that more people understand what we go through. Sometimes I feel like I deserve a gold medal just because I manage to whippersnip and mow my lawn in one day, or walking to the shop is a major achievement at times. So I’m glad I found your site, because it’s good to know there is a lot of support around.
I only found your site by accident, coz I decided to setup a new blog to talk about my own CFS and I found that the name ‘livingwithcfs’ was already taken lol. But that’s ok coz it’s all for a common cause. Thank you again for your great site and I look forward to reading a lot more of it
Yvette said
Hello,
I agree,no one understands,when you tell them,how fatigued you are. It took me, leaving a job I worked at,for sixteen years and one that I loved. I was finally,after all the blood test,thyroid,Lymes disease (repeated for years),diagnosed with CFS. I became disabled in 2009.
It’s hard finding a balance. When I do too much,it takes a couple of days to recover,some times
longer. When I do too little,I feel guilty and feel like I should do more. But I’m learning.
Yvette
addicted2coffee said
I thought I’d also add, that my doctor also told me that some of the pains I get are due to FM and that some small walks each day may help, but once again to not overdo it.
Anyway ty, tc l8r t8rs
Ags said
Hi all,
I stumbled upon this and some other CFS sites while trying to figure out why I often get super sick after exercise. I was hoping someone could comment on whether what I’m feeling sounds like CFS-related post-exertional malaise.
I’m a 26 year old healthy female, and this has been happening to me for the past 5-6 years or so. Basically, I’m fine while I exercise and have not noticed a decrease in exercise tolerance (I’m training for my first half marathon now), but about 1.5-2 hours after I finish, I get very sick. Really bad fatigue, nausea, lightheadedness, GI upset. It usually lasts a couple or a few hours, but during that time I can’t even get up off the couch. I’ve already ruled out other possible causes like dehydration, low blood sugar, etc. This doesn’t happen every time I exercise, but it is not in any way correlated with how long or how strenuous the workout is. I hate that I now have to plan out my days so that I don’t have to do things in the hours after exercise because I don’t know if I’ll get sick or not.
Besides that, I’ve also had some problems with general fatigue, but I’m also being treated for depression, so it may be part of that. Around the same time that this exercise thing started happening, I also began having occasional episodes of fainting – sometimes caused by long periods of standing or a stressful situation, but often they come just out of nowhere.
Does any of this sound familiar?
vsparrow said
Hello Ags,
You do have something going on, but it seems to me that if it were CFS you’d wouldn’t be able to exercise for 1.5 hrs in the first place, or even consider going on a half-marathon. I think you should go for blood tests to try to rule out anything else first. Fatigue is also a symptom of depression, as you seem to understand. Perhaps your medication needs to be re-evaluated.
Good luck.
VS
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Ken Conner said
I have a disease called CADASIL that causes cronic fatigue. It’s a common symptom. http://www.cadasilfoundation.org
Mark said
vsparrow – Very true indeed, If I go for a 10 minute walk I end up in bed for days it is Hell so I only do walking in the supermarket in one day as that is as much as my body can handle.
Mark said
vsparrow – Very true indeed, If I go for a 10 minute walk I end up in bed for days it is Hell so I only do walking in the supermarket in one day as that is as much as my body can handle.
Luckily I am able to drive my car everday and drive to the supermarket to get food but that is as much exercise my body can handle or else if I do a 10minute walk I end up wiped out for days, it just isn’t worth it.
Mark said
Hi guys it is Mark here it is now January 2011. I feel like screaming I am SICK TO DEATH OF CHRONIC FATIGUE SYNDROME. It feels like I am trying to climb a mountain all the time everyday of my God Damn Fricken life. Life is a total bitch and then you die end OF FUCKING STORY!
Mark said
Hi everyone it is Mark here I went for a 5 minute walk today my muscles are twitching all over my body even my eye lids are twitching. I am determined to be able to exercise again because I am getting worse resting all the time and my body is getting weaker. I used to cycle everyday 7 days per week 80kilometres everyday and I was super super fit. I hope I can get up to 30minutes walking everyday then I will be a happy man happy as can be. Just doing that 5 minute walk just now I got my endorphins going and I feel happier than i have ever been. Tomorrow will be the test to see how my body goes, but I am just going to push through the fatigue because this lady did in a magazine and then overtime her body got better.
I just want to be able to do 30minutes walking everyday as I know that is my limit as I was able to do 45 minutes everyday 9 months ago as I have had chronic fatigue syndrome for 1 year now. What I did wrong 9 months ago is I stopped exercise all together. It wasn’t causing me fatigue the 45minute walk everyday I just got bored of it, but now I want to do 30 minutes everyday as it will make me a happier person.
I am determined!
Mark said
My muscles have stopped twitching, looking forward to my next 5 minute walk tomorrow. In 5 days I am going for a 10 minute walk and see how that goes. SO want to be able to go for a 30minute walk everyday again.
Mark said
I am pushing through the fatigue with exercise I’m not going to be a slave to this Illness anymore I am going to slowly gradually build up my exercise I have noticed I haven’t felt as tired today from doing exercise which is a good sign as if you don’t exercise the body gets weaker and weaker and you lose ground and get worse with fatigue which is not what I want to happen to me which is what I have noticed these last couple of months.
Mark said
I tell ya this illness is a hell of a battle I never thought in my whole life time being 22 now that I would ever get a disease/illness boy was I wrong.
Mark said
I have gone for a 5 minute walk today I ended up in bed for 1 and a half hours after the walk. Tomorrow I am going for a 6 minute walk I wont give in to this illness anymore I HAVE HAD IT!
Hopefully in time I will be able to go for a 30 minute walk everyday.
Dee said
Hi Mark
it sounds like you may not have found a base line for your activity levels (i.e what you can do without making yourself feel more unwell on any day), so like when you said back in October “as much exercise my body can handle or else if I do a 10minute walk I end up wiped out for days”, I am wondering if you are overdoing it on a day you feel well and underdoing the a few days after as you feel so unwell. It has taken me months to get to the point of finding what I can do without making myself worse, and building up from that and its not an easy thing to work out, you need the help of friends or family. I haven’t read any of the other posts yet on this website so apologies if you have left more information else where- are you not under an experienced CFS doctor or team?? I am in the UK, and I know over here it’s hard to find someone experienced. If you have not had any help have a look at the leaflets on http://www.epsom-sthelier.nhs.uk/our-services/a-to-z-of-services/diagnostics-and-pharmacy/pathology/immunology/chronic-fatigue-syndrome/patient-information-leaflets/ again depending on how your memory concentration/brain fog is you may need someone to help you sort through them. If you haven’t already do an activity diary for 2 weeks if you can- make a record of what activity you did, how it made you feel after (remember the fatigue can also be delayed a day or so), what level of intensity it was high energy level activity, medium or low (The leaflets on the website explain it all)- make sure you add in when you are resting, and how you are resting e.g Resting is not reading or watching TV as this still takes energy. and it’s not sleep!! I was taught to use deep breathing and relaxation CDs to have a ‘rest break’. They have a leaflet on this too- but I would advise you do it lying down on your back with your arms at your sides not sitting up as they say (as sitting up still takes energy and also most people have not got very good sitting posture) When I was at my worst I was needing to do a 20-30 min rest break after every hour. However I quickly improved. Relaxation/meditation is the thing that has helped the most during my year of being really unwell. I really can’t recommned it enough. It is like it recharges your batteries. There are lots of different types and you need to find one you like- e.g some people are very visual so like visualisation ones e.g some guiding you on a beach one, others prefer other types. Also if you are going to use them regularly you will need more than one or you will get bored!!! Now I only need a rest break of 20 mins using the Cds every 3 hours and I have been able to hugely increase what I have been doing physically. I was told be the hospital I am under only to increase my activity level every 3 weeks from the baseline- and then only by 15 minutes or so….it is a slow process but it has worked well with me and other people I know.
Good luck!!
Mark said
Hey thanks for your reply and the information you have provided me. In April last year I was able to do 30-40 minutes exercise everyday and my body could handle it. Then I stepped it up to 45 minutes 3 times per day and that was wiping me out. I now know my body can handle a 30minute walk everyday without making my fatigue worse. I went for a 15minute walk today and I felt fine after it is only now that I feel tired but I think I will be ok for tomorrow to do another 15 minute walk. I don’t mind if I end up in bed from these 15 minute walks I am going to get up to the 30 minute mark and stop there and do 30 minutes everyday. I am going to push through the fatigue. This is because these last 9 months I haven’t been doing any exercise at all and my body has gotten really bad, I mean I still have a good body weight of 68kgs but I read this article and this lady is now doing Marathons because she pushed through her fatigue with exercise and instead of being in bed she is now out and about. She spent 3 years in bed and one day like me finally had enough and started exercising. I think I’ll be fine, thanks for your advice, but whenever people say don’t exercise because it will make you worse I am trying to ignore that because I will never end up doing exercise again which is what has happened these last 9 months. I am going all out now. I am looking forward to my next 15 minute walk tomorrow, YAY!
Dee said
Hey Mark
that’s great….I know it is so hard to do…I used to run ski, skate etc, and have been so frustrated with what my body couldn’t do.
Just do me a favour- and actually try the relaxation/breathing stuff. e.g actually purposefully go to bed after your walk but try some deep breathing, or relaxation/meditation and see how it recharges you- don’t sleep!! The theory is if you sleep in the day it wrecks your sleep pattern at night. Only very occasionally I will fall asleep in the rest break- and if I do I don’t beat myself up, I just get up when the Cd finishes. You can just think of it as recharging your batteries regularly so you can do more exercise or activity in a few weeks. CDs or MP3 are the easiest way to do it- let me know if you want some recommnedations
Mark said
Dee I definitely understand what you are going through I have honestly had times where I feel like I can’t carry on but for some reason I manage to carry on with life, I don’t know how but I do and I hope to God that one day I will be able to do normal things like everyone else. I am wishing beck 16-20 and a half year old that I gave my body breaks from doing 80 kilometers of exercise everyday. Because of this I have chronic fatigue syndrome because I stressed my body out without giving it rest days like professional athletes do. GOD am I paying for it now life is horrible I wish my fatigue would end for goodness sake, why do people like us have too suffer, I mean it is 2011 and they don’t even have a cure, what a total bitch of a life we are all living, YAY!
Dee said
Mark, you will recover! One of my friends was bed ridden for a year, and she very slowly built up her life with pacing her activities, relaxation rest breaks, monitoring her stress levels and slowly building the exercise. She found tai chi and yoga to be the best. She is now back at work, and enjoying loads of things. Stress is the worst thing, as its so draining. So actually relaxation CDs help with that to, not just resting
Mark said
It is 2011 for god sakes and I hate suffering from fatigue, God why wont you make me better why does everyone with diseases and illnesses have to suffer. I mean I am 22 and a half years old and before I know it I will be an old man and would have accomplished nothing in my life, YAY! God life is a total bitch like a roller-coaster from hell is what I go through everyday with chronic fatigue syndrome, never lets up, it just likes to torture me and prodding me, thanks a lot GOD!
Mark said
WHY DO WE HAVE TOO SUFFER GODDDDDDDDDDDD DAMN!!!!!!!!!!!!!
It has been a whole year and one month now with Chronic fatigue Syndrome I have been doing all the right things and nothing works. I take 8000milligrams of fish oil which helps but it wont cure me NOTHING WILL DAMN!!!!!!!!!!
I hope I don’t have to go on like this for years to come I just want it to be over AAAAAAAHHHHHHHHHHHHHHHHHHHHH I feel like screaming out of my fricken mind, yet all us have to continue to suffer. I had a lady today and she know I have chronic fatigue syndrome and she said add 5 5 minutes more of exercise everyday and she smiles like everything is fine, she doesn’t even have a clue what I go through on a day to day basis yet she thinks if I go running and do lots of exercise I will be fine, I feel like telling all these people too shut the hell up. I used to be into body building I developed massive muscles I was bike riding 80kilometers everyday of my life, why the heck would I all of a sudden not exercise anymore, I tell them over and over again it is because I have chronic fatigue syndrome and they just tell me to harden up. My parents understand me which is good but everyone else even my grandparents think I should just exercise my brains out and then I’ll get better, well people it doesn’t work that way.
Dee said
did she tell you to add 5 minutes or 55 minutes each day????
The doctor told me that physical therapists (or physiotherapists as we call them over here) who do not understand the condition can make it a lot worse.
Please print off the leaflets on the link I sent you and read them with your parents. It will help you to get your activity levels to a point that you are in control.The are written by a whole health team an immunology doctor, an occupational and physical therapist and a psychologist.
Mark said
Will do what you say, if you want to contact me my hotmail is
Markcars@hotmail.co.nz
Mark said
It feels like I am losing my fricken mind. I accepted my chronic fatigue syndrome for 1 year now and now it feels like I just can’t keep carrying on everyday through this hell yet I want to live so badly as I want to travel the world one day, I want to get a girlfriend have heaps of friends party and party which I never did in my teenage years because I was such a health freak as I would cycle 80 kilometers everyday. Life isn’t FAIR! Now I am wishing I didn’t do any exercise in my teenage years and just smoked heaps of weed like all they other kids my age, then now I wouldn’t have chronic fatigue syndrome, as all the exercise in my life is what has caused it. I over did exercise all my life and now I am paying for it.
Mark said
Don’t worry everybody I am not suicidal I am just overwhelmed with this disease chronic fatigue syndrome.
Mark said
Dee i will do your meditation techniques, I think I am just going to do a 8 minute walk tomorrow and not a 15 as I am feeling it now. I can’t sleep because I did too much exercise today and my body is too fired up and can’t relax. I am just doing my 8 minute walk which is only 180meters not 500 that I did today. I do a lot of walking around my house everyday as I live in a a big house with my parents I think I get around 1 kilometer of exercise everyday in my house alone. The 1 kilometer exercise I get in my house everyday isn’t making me worse. I have actually found that going for a 8 minute walk has actually improved my fatigue and I am just going to stick with 8 minutes for the next week or so and then improve to a 10 minute walk. I will tell you guys how I am tomorrow I could be wiped out so I have to take it easy Dee just like you say, and I will buy a relaxation cd.
Dee said
Mark let me know if you want a recommendation.
I don’t know how much you learnt about the stress response/ fight or flight response of your body in school/college- but this is what you need to calm down- when your body is pushed beyond what it can do this is activated so if you have over done it in the day do a CD to calm down before bed, don’t watch TV just before you go to bed as it is very stimulating to the brain with all the noise and flickering light- you need a wind down period before bed
my friend was told to use a heart monitor by the team she was under as when her heart rate increased due to stress or if she had over done it she used the breathing techniques to calm it down again.
Mark said
Hey Dee thanks heaps for your comment will do what you say. You are so right 15 minutes today was too much and that is why I can’t sleep. 2 years ago in 2009 I was given a medication that made me so restless I couldn’t sit still for even a second I had to be constantly on the go. That drug was used for anxiety as I have had bad anxiety most of my life but it has almost gone away now. Anyway my psychiatrist wouldn’t take me off the horrible medication and I ended up suicidal in Novemeber 2009 and they sent me to a mental hospital. In the mental hospital I was so distressed as I didn’t like the place and my heart would race all day long. They gave me a medication in there that made me throw up for the whole 3 months I was in there. I thought it wasn’t the medication that was making me throw up for all that time in the mental hospital I thought I was just sick and had the flu but i was wrong. Then I got out of the mental hospital, (discharged) and came off the medicine and it took 2 weeks for the throwing up to stop and I would get electric shocks through my entire brains and it felt like someone was stabbing my brain coming off the medication and then when it was out of my system I ended up in bed for 3 months last year because my body had just been through so much.
Mark said
Hi Dee and Rae, I have improved since starting exercise. I was getting worse but since a week and a half ago I started on one minute walk and now I am up to 5 minutes walking in my favourite forest. I have noticed my energy has improved A LOT!!! I believe I will recover from Chronic fatigue Syndrome eventually. Thanks Dee, all the best
Mark said
I have to drink some water now I am a bit flustered.
Rae said
Mark,
I’ve only read part of this blog, so excuse me if I missed this. One have your doctors tested you for the Epstein-Barr Virus? In 70-80% of people who have CFS also have EB, Also may want to test for CMV and HHV6. The more active the virus…the worse you will likely feel. On another note. I’ve been suffering from this for more than 20 years. The first year is the worst. I slept most of it. It gets better, for some they seem to go into “remission” and never relapse. For others they relapse from illness or stress, and some are like me Chronic. You will learn to push yourself over time. You will learn your limits. And you will learn that there are good days and bad days. I completely understand the frustration!
It is good that you are keeping up the exercise, don’t stop, it will get worse if you let yourself go. Also I have had many doctors try anti-depressants and other similar medications with me, I know they are a god send for some, but if you are like me they make it much worse, the side effects are worse than the illness. My advice is be open minded, but you know your body best. And like Dee is telling you deep breathing is beneficial in not only calming you, but it gets more oxygen into your cells…which in turn will help with fatigue. If you are suffering from muscle pain, consider alternative medicine, like acupuncture. It has helped many. I’m not a super holistic hippie type, but when western medicine fails you keep an open mind! Above all try to find some positive energy in your life ex. laugh, stay connected to friends (even though tough at times), and keep moving!
Best of luck!
Mark said
Hi Dee and Rae, I have improved since starting exercise. I was getting worse but since a week and a half ago I started on one minute walk and now I am up to 5 minutes walking. I have noticed my energy has improved A LOT!!! I believe I will recover from Chronic fatigue Syndrome eventually. Thanks guys
Mark said
Dee it is Mark here, sorry about my email address. I am going to get a relaxation CD.
Is the “lightning process” worth trying???
Mark said
I was able to do 5 minutes but it has become too much everyday.
Is the lightning process worth the money, will it fix me???
Mark said
Catherine Morgan, sorry for all the swearing, I was just really frustrated, I still am frustrated but I don’t swear anymore, sorry for my language in much previous messages.
Dee said
Hi, the lightening process works very well for some people, but it is expensive. If you have the money and you have read up on it and it appeals to you go for it…..but like anything it is not a magic cure and it will mean YOU have to make changes in your life…not expect someone to wave a magic wand and do it for you……you appear like you haven’t yet managed to implement other things you talked about months ago yet e.g the relaxation cds as way of pacing yourself and having effective rests…so maybe think about making smaller changes and be consistent with them first, with something the lightening process, CBT or NLP when you are ready?
David Lee said
Hi Mark and Dee,
Very interesting comments on this blog, so thanks for sharing. I too suffer from CFS/FMS, I seem to be able to go for anything up to 1 hours walk on the hill at the back of my House, and some days I have no flair up, but then if I overdo it even by just a little I end up with severe pain and lethargy, and sore muscles and totally crash out. I just seem to need to sleep constantly, sometimes for what seems like days on end. So what causes the flair ups? is it lactic acid or some sort of mitocondrial distress? Do you know any supplements that can help. What I don’t understand is what is the difference between chronic fatigue and fibromyalgia?
Dee said
Hi David, it sounds like you are still overdoing it. You need to take into account what else you have done that day, and even the 2 days before- so it might be on the days you have done a lot of other activities and then you walk an hour you will have a flare up, or possibly you had a couple of days over doing activity and then did your hours walk and had a flare. You need to find a baseline of what activity you can do and then stick to that for about 3 weeks, then slowly increase. There are helpful leaflets here http://www.epsom-sthelier.nhs.uk/our-services/a-to-z-of-services/diagnostics-and-pharmacy/pathology/immunology/chronic-fatigue-syndrome/patient-information-leaflets/ but if you have cognitive problems as a result of the CFS you might need a friend of family member help you work this out. Especially see their Activity management leaflet. and the activity diaries. It also really helps to work out which activities are high level energy activities, medium and low level- and these need to be spaced throughout the day- e.g do not do 2 high level activities back to back. You must look at PHYSICAL, COGNITIVE and EMOTIONAL activities- this is not just about how much energy you use on physical activities. Cognitive includes memory, attention, concentration- so would include reading, using computer etc- although in terms of using computer it is also physical0- especially as most people have poor sitting posture- so this can actually use quite a lot of energy. Also bear in mind watching TV using energy too- it is not rest, particularly if you are watching something exciting e,g a thriller. and also socialising is so important for our psychological well being- it is actually tiring when you have CFS- so I had to be disciplined that when I spoke to friends or had them come over I had a rest before and after- and when I was really poorly that would be all I could do on that day- now thankfully I just need to make sure I do the rests before and after
Meditation/relaxation rest breaks is what has really helped me recover spaced throughout my day, everyday- not just when I feel awful, and the trick is to do it before you feel awful!!! So you are constantly topping up your energy. see the post above I wrote.
You will need to find a website that explains the difference between CFS and fibromyalgia (there are many!)- I am not a doctor so and am not really interested in lactic acid or mitochnondrial distress, I am just interested in techniques that will get me better and maintain my health. The consultant neurologist I was under told me that IF CFS is managed properly by the doctor, patient and other health professionals (e.g occupational therapist and physio) it should only last 1.5 years – 3 years, although we may have to still keep pacing and using strategies after recovery e.g relaxation as stress really effects most medical condition but especially CFS. ‘Off the record’ by another doctor who specialises in CFS I was told to try a supplement that contained Cordyceps and Reishi mushrooms, he was looking into the research and said it looked promising- he just said there was not enough evidence to recommend it officially on my medical report if that makes sense- he also told me a friend of his who was a doctor had CFS and found the supplement helpful. Interestingly I did start to recover a few weeks after I started it, but I was also very strict about pacing and doing rest breaks/relaxation too, I was off sick from work for 1 year, but I am now back at work, and slowly increasing my hours at work. I also found myofascial release helpful for the pain but you need to find someone who is trained and experienced using this technique.
below is another leaflet I found useful- i don’t have a website reference so will just copy and paste it
Graded Activity and Pacing: What It Is and How to Do It
What is Graded Activity?
Graded activity is a simple method of planning your activities and gradually increasing what you do. It is not an exercise programme!! It aims to give you control over your symptoms rather than the fatigue and pain controlling you.
What are the Effects of Rest?
Although rest is an effective way of reducing tiredness and brings symptom relief in the short term, in the long term it is less helpful as it reduces exercise tolerance and stamina and can produce increased weakness, muscle wasting, and breathing difficulties and increased sensitivity to activity. Prolonged rest brings about short-term symptom reduction but a long-term increase in disability.
Following a period of illness and prolonged rest, any activity then produces an increase in a range of associated symptoms, as the body is ‘deconditioned’ and has lost stamina. This results in a vicious circle of fluctuating bursts of activity and rest as people try to control and manage the symptoms. This is called peaks and troughs. People end up alternating between doing too much on a good day (well phase) – peak- and then too little on a bad day (poor phase) –trough- in order to recover and reduce symptoms, leaving themselves in a physiological and psychological limbo.
• The body is simply not as fit as it once was, and pushing the body beyond it current fitness level will then bring on excessive increase in symptoms.
Excessive rest may mean that you are not achieving anything, so you feel a failure compared with what you are used to do. It may also mean you have more time on your hands to brood on your condition and become frustrated and bored.
Is Activity Harmful?
• Graded activity is not about exercise but about daily life and lifestyle management.
• Most people, when they start grading their activity, actually have to cut down rather than add in activity!!
• Graded activity does not mean pushing beyond your limits.
• It aims to stop the peak-trough cycle and replace it with a gradual change in your daily routine
Where do I start?
The initial stage is to build up a picture of exactly how much activity is carried out on a daily basis, in particular your pattern of rest, activity and symptoms. Once this is established we can plan strategies to enable gradual and systematic increase in the amount of activity in a step-by-step fashion. The steps (goals/targets) need to be realistic and achievable.
Scheduling Activity and Rest
Pacing is the key. Graded activity aims to enable sustained and consistent activity on a daily basis. Doing tasks in stages and slowly building up how much you can do takes time, however this will help you to achieve more in the long run and sustain it. Goals or steps are established that concentrate on each person’s major difficulties.
The purpose of these goals is to facilitate:
(1) a gradual increase in tolerance to activity;
(2) a reduction in symptoms;
(3) an increase in previously avoided behaviours and activities.
• The major problem people encounter on returning to activity is that if they were previously very fit and active they are more likely to attempt a rapid return to high levels of activity/exercise to which the body cannot respond due to its physical decondition
• Activity has to be paced and gradual. When in a good phase people will tend to do all the activity they have not been able to do in a bad phase in an attempt to catch up.
• Rest needs to be timetabled into each day, regardless of symptoms, so that it becomes consistent and part of the daily routine rather than varying dependant upon symptoms. For some people it helps initially to structure each day to gain an understanding of the balance required between rest and effort (see below Figure 1: an example of a Daily activity diary).
• The example below of a Daily activity diary shows a lot of structure and rest breaks for someone with severe Chronic fatigue symtoms, and it should be noted that this amount of structure will not be required for all people;
• However bear in mind that even though you may not as many rest periods as shown below, both rest and activity need to be scheduled into each day regardless of symptoms being present or not. During the session(s) you will select goals which are important to you. We will then consider these and timetable them into your daily life. You will need to break each goal down into achievable tasks.
Figure 1: Example of a Daily activity diary
Date………………………….Name…………………………………………..
Time
Activity
9.00 Wake up/activity session
10.00 Rest period
10.30 Activity session
12.00 Rest period
12.30 Activity session
2.30 Rest period
3.30 Activity session
5.30 Rest period
6.00 Activity session
8.00 Rest period
8.30 Activity session
9.30 ½ hour wind down
10.00 Bed
We can look at goals that are clear and specific, and set at a manageable level. They are increased gradually to slowly increase the amount of activity carried out each day. Examples of goals people have set themselves to include:
(1) To get up at 9.00 am every day.
(2) To walk for 15 minutes three times a day.
(3) To rest for half an hour five times a day.
(4) To have a friend visit twice a week.
(5) To go to the shops once a week with friends or family.
What to expect
Initially when carrying out activity on a daily basis at a level you can manage, there will be a temporary increase in fatigue and other symptoms. It is important to expect this, but to realise that it will be only temporary. It does not mean that the treatment is not working, or that the illness is worse – it is just that your body needs to get used to this new pattern of planned, consistent activity and rest. It is important to persevere with your chosen tasks/targets as once your body becomes used to the pattern, the symptoms will subside by themselves, and you will be able to move onto the next stage.
Difficulty with Mental tasks
Sensory overload
Many chronic fatigue and pain conditions lose their ability to distinguish between important and unimportant sensations. This is why you may have difficulty in a shopping centre. Information bombards your ears and eyes resulting in ‘sensory overload’ and fatigue. Normally when we shop we pay attention only to the information that is relevant, for example the prices, and would automatically screen out other information such as the presence of other people or the noise. People with chronic fatigue syndrome in particular give the same importance to all these sensations which then compete for attention – it is not surprising they get tired!! Management of the sensory overload is just as important as physical management, and for some people is the most important aspect of the daily management of fatigue and/or pain symptoms.
Techniques for Memory and Concentration
(1) Keep lists
• This aids memory by repetition. The written list acts as a reminder as well as helping you pace your activities.
• Keep the lists short, three to four items at the most. This way you are less likely to forget part of the list.
(2) Identify the times when you are more mentally alert and keep mental tasks for those times. This many not always be possible. Remember: try to avoid mental tasks just prior to bed, as this may increase your difficulty getting off to sleep.
(3) When you are completing a task that needs concentration, cut down
on competing sensations. For example, if you are driving, switch off
the radio and ask any passengers not to talk.
(4) When reading, some people find it helpful to have a reading window to
limit distractions. This is simply one or two pieces of paper, preferably
white, to show only one/two lines at a time. As you read you move the card down the page. This is blocks out competing information from the rest of the page. This idea can be taken further by reading on a table cleared of all other material – again this removes competing information.
(5) Use mnemonics (memory tricks) to remember things. For example use
the first letter of each word you need to remember and make up a
smaller word, i.e. Nato = North Atlantic Treaty Organisation. Or link items with locations or places; for example, when introduced to someone new link their name with a county or country.
(6) Games can be helpful in improving memory and concentration. They are mental exercises, so the same rules apply as to activity. ‘Start simple’ for short periods, and gradually build up. Crosswords help verbal skills; computer games or cards help non-verbal skills. You can create your own games by reading part of the paper or an article, and then getting someone to ask you questions about it. Remember: keep it short and simple to start with.
Summary
(1) Plan your time.
(2) Plan rest and relaxation periods into each day.
(3) Break each activity into smaller manageable and achievable stages.
(4) Carry out the sane amount of activity and rest every day
(5) Avoid over-activity when you are feeling good or enthusiastic and reducing activity when you are feeling bad.
(6) Increase activity and reduce rest slowly and gradually.
(7) Don’t expect to feel better immediately; remember that your immediate goal is to stick to the programme, not to overcome all your symptoms.
(8) If you work steadily at becoming more active, you will eventually find your symptoms resolving.
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dailybreadeditor said
Thanks, it’s good to have some new ideas about CF.