The “Fatigue” Disorders
Multiple sclerosis (MS) ranks amongst the most fatiguing disorders known. Fatigue is the most common symptom found in MS (75-95% of patients), and is a major research topic with ten studies in the last five months featuring fatigue in their titles.
Both ME/CFS and MS are fatiguing disorders – but is their fatigue similar?
Like chronic fatigue syndrome, though, the fatigue in MS is a mystery. In fact, in some ways, it’s even more than a mystery. The fatigue in MS is, oddly enough, not correlated with disease severity. People with MS can be fatigued before lesions start popping up in their brains. Severe fatigue is often the first symptom to show up in MS.
Several types of fatigue are believed to occur in MS, one of which – “lassitude” – may be unique to the disorder. Lassitude refers to fatigue that occurs daily, that tends to worsen as the day goes on, is worse in hot and humid conditions, comes on easily and swiftly, and is more severe than normal fatigue. [The coining of “lassitude”, which is right up there with “malaise” in its negative connotations, makes one wonder if the medical profession is capable of coming up with a fatigue-associated word that is not debasing in some way.]
MS has “lassitude” while ME/CFS has post-exertional malaise (PEM) – a term that was apparently coined specifically for ME/CFS. That people with MS are advised to find energy-saving ways of walking and performing tasks suggests PEM is present. That they’re advised to develop an exercise program suggests it may not be. Exercise studies, in fact, suggest that PEM is present in MS, but not nearly to the extent it is in Chronic Fatigue Syndrome.
Both ME/CFS and MS are amongst the most fatiguing disorders found, but does the resemblance end there? Does the PEM present in ME/CFS mean the fatigue found there is different or is it similar? Do some genes contribute to fatigue while others cause PEM? These are some of the question the White’s put to themselves in this 2012 study.
The Study
Differences in metabolite-detecting, adrenergic, and immune gene expression following moderate exercise in chronic fatigue syndrome, multiple sclerosis and healthy controls. Andrea T. White, Ph.D.1,2, Alan R. Light, Ph.D.3,4, Ronald W. Hughen3, Timothy A.VanHaitsma, M.S.1, and Kathleen C. Light, Ph.D.3 Psychosom Med. 2012 January ; 74(1): 46–54. doi:10.1097/PSY.0b013e31824152ed.
In this study, 22 ME/CFS and 23 MS patients and 20 healthy controls engaged in moderate exercise for 25 minutes. Just before, ½ 8, 24, and 48 hours after the exercise the expression of select genes in their blood was measured. Their symptoms were assessed as well.
The Real Fatigue Disorder
The MS patients were indeed fatigued. In fact, their self-report fatigue scores before the exercise test were twice those of the people with ME/CFS (72-35). The pain scores at baseline, on the other hand, were significantly higher for ME/CFS patients than for MS patients.
The Post Exertional Malaise Disorder
Fatigue is present in both disorders – but only the ME/CFS patients got whacked by exercise
Despite their enormous fatigue, the MS patients mostly sailed through the exercise period. Their physical and mental fatigue did rise 8 hours after exercise, but both were back to baseline at 24 and 48 hours. At no point did exercise increase their pain levels.
The ME/CFS patients, on the other hand, immediately experienced increased levels of physical and mental fatigue and pain after exercise – which were still present 8, 24, and even 48 hours later.
Simply looking at the symptoms indicated that MS is primarily a fatiguing disorder and that MS patients may experience more fatigue than ME/CFS patients. They do experience some PEM, but nothing like what shows up in ME/CFS.
Fatigue is obviously present in Chronic Fatigue Syndrome, but it’s more of a post-exertional malaise disorder. This study suggests Post-Exertional Relapse Syndrome would have been a better name for ME/CFS than Chronic Fatigue Syndrome.
But what do the genes say? Would these differences show up in the gene expression results?
They would….
The PEM Genes – Where ME/CFS and MS Part Ways.
The expression levels of two genes (P2X4/TRPVI) that bounced up immediately after exercise in the ME/CFS group, and then stayed elevated for 48 hours were associated with post-exertional malaise. One of them, P2X4, was directly associated with both the increased fatigue and pain experienced after exercise in the ME/CFS patients. These are muscle metabolite sensing genes that assess the levels of factors associated with muscle fatigue and damage.
A “Well-Regulated Sensory Pathway”
After exercise the MS patients looked more like healthy controls than the ME/CFS patients. The levels of the metabolite sensing genes actually dropped in both the MS and healthy controls eight hours after exercise and then rebounded to normal levels. The Lights called this response evidence of a “well-regulated sensory pathway” .
A Not So Well Regulated Sensory Pathway
“Well regulated” was not the how the authors characterized the sensory pathways in the ME/CFS patients
That sensory pathway looks more than a little dysregulated in ME/CFS.
The Lights suggested that even normal levels of muscle metabolites may be sparking an overexpression of metabolite-sensing genes in people with ME/CFS. Those genes are there to alert the central nervous system that the muscles are overworked and that it’s time to induce fatigue and pain to keep them from being injured.
Metabolite receptors that are going bananas after even small amounts of exercise could easily explain the fatigue and pain ME/CFS patients experience after exercise.
It’s also possible that they simply reflect the fact that exercise is harming the muscles in ME/CFS. The authors noted that the Newton pH studies suggest just that – that sympathetic nervous system problems may be either increasing proton buildup or the ability to remove protons and other metabolites from the muscles.
The Fatigue Genes
Increased increased levels of adrenergic receptors suggested that sympathetic nervous system dysregulation was contributing to fatigue in both disorders. One of the receptors is involved in directing blood flows to the muscles. Reduced blood flows to the muscles could be interfering with oxygen transport and with the removal of metabolites.
Genes that detect damaging muscle metabolites appeared tied to post-exertional malaise in ME/CFS
Bye-bye Fatigue?
These findings suggest that a variety of distinct symptoms have been shoved under the fatigue label – but that if researchers take the time to really articulate those symptoms they can say a lot about a disease.
There’s nary a mention of PEM in MS. Nowhere in the description of “lassitude” are the effects of exertion cited. Post-exertion problems, on the other hand, permeate the ME/CFS literature.
The findings also have implications for research. The omnipresent fatigue and moderate and transient PEM suggest MS patients can be profitably studied when they’re at rest. The moderate fatigue and enormous PEM found in ME/CFS, on the other hand, suggests that pushing their systems with exertion is the best way to uncover what’s going on.
Conclusion – the Fatigue Disorder and the PEM Disorder
Despite both disorders being associated with high rates of fatigue, people ME/CFS and multiple sclerosis had very different responses to exercise – and display very different types of fatigue. The fatigue in MS is omnipresent but is not greatly affected by exercise. The fatigue in ME/CFS is.
Both the symptom and gene expression results suggest multiple sclerosis is primarily a fatiguing disorder that has a moderate post-exertional malaise overlay, while Chronic Fatigue Syndrome is more of a post-exertional relapse disorder with moderate (at least compared to MS) rates of fatigue.
The word fatigue doesn’t begin to describe the different kinds of exhaustion present in disease
The MS patients fatigue levels increased shortly after exercise but then diminished quickly. At no point did the pain levels of MS patients increase.
Fatigue in the ME/CFS patients was lower than in the MS patients at baseline, but exercise caused their pain and fatigue levels to increase rapidly and remain elevated even up to 48 hours after exercise.
Gene involving muscle metabolites and the sympathetic nervous system were associated with PEM in ME/CFS. Increases in genes associated with sympathetic nervous system activity were associated with increased fatigue after exercise in both disorders. Muscle metabolite-detecting genes appear to play a key role in producing post-exertional malaise in ME/CFS.
- Next up – Dane Cook and the Lights take on exercise in ME/CFS
I think ‘fatigue’ is a poor word and suggests tiredness. To me, ‘exhaustion’ is a little better, in that it suggests severity. Of course, nothing really describes that ‘limbs of concrete’ where you can barely lift or move an arm.
I do remember once particular night after work many years ago, when I managed to walk the 10-12 mins home from my office (with several rest stops), barely able to step up the 3 shallow steps to my door, lift my arm to put the key in the lock, in my door, then sat on the couch (with my coat still on) and unable to move for about 3 hours as the room fell into darkness.
Finally, about 9.00pm, I managed to get up, turn the light on and stuff a couple of slices of bread in my mouth (as I felt dizzy), undress and fall into bed.
Another time, I had to hang on to a lamp post on my walk home from work for about 10mins to stop from falling over after a day at work, but since quitting my job in 2010, I am much better able to pace my day and actually, have a relatively enjoyable life (albeit no social life and keeping my day pretty simple).
I consider myself very lucky these days.
Vicki, like you I consider myself very lucky to be retired. I took ill-health retirement in 2005 and gradually I am learning to live. I can even go on holiday now, something I could not do in all my years of teaching, even with the long holidays we get. They were spent recovering.
Fortunately I did not experience such high levels of fatigue as you, but life was a constant effort.
I would now say that my life is one of contentment, except for the times when I decide it’s time to ‘live’ and do something like wandering around Oxford or having a friend around. I enjoy my time but I pay for it afterwards with PEM and low mood. Life is a balancing act. Good luck working out your own balance.
I think fatigue is not only a poor word, but it not specific or definable. In the CFS diagnostic criteria most in use, they describe a general fatigue, rather than what Ramsay described, as muscle fatigue or weakness on reptition, with delayed recovery. This still relates to energy production, but is different to the feeling of fatigue, which isn’t specific to ME.
I was wondering why the word fatigue aggravates me. I think it’s because it implies some careless or ego-driven over exertion like an athlete who just doesn’t know when to quit. Since when is this paralysis a fault of some ego driven overachievement? Had I best get back to my proper station???
That sounds like a perfect example of the difference between MS and ME/CFS.
If I experience both “lassitude” and post-exertional malaise, what does that mean?
‘Reduced blood flows to the muscles could be interfering with oxygen transport and with the removal of metabolites.’
Les Simpson has done extensive research into the blood flow problems in ME/CFS. Immediately fixed samples of blood show that there is an increase in the proportion of non-deformable erythrocytes (red blood cells which are not in the very deformable – flexible – biconcave discocyte shape which medical students are taught is the (only) shape of a red blood cell). The presence of a large proportion of different shapes (cup shapes, shapes with irregular edges etc) which cannot deform sufficiently to get through the smaller capillaries means that the organs most dependent on the red blood cells performing their function of delivering oxygen and removing metabolites suffer and begin to malfunction. The genes which are sensitive to the presence of metabolites are responding to the fact that there is a lack of oxygen and a build-up of metabolites in the muscles, as well as in the cognitive areas of the brain, and the limbic system due to the problems of blood flow. However hemorheology is not taught in medical schools, so that medical research fails to consider the consequences of these physical changes in the red blood cells. Also standard techniques for preparing blood samples for taking micrographs involve washing the samples in saline and anticoagulants, which allows the irregularly-shaped cells to revert to the biconcave discocyte shape before being micrographed, so that these effects will only appear in samples which have been immediately fixed. Hence articles purporting to disprove these effects, simply because they have not followed the research protocol requiring immediate fixation of blood samples. For these reasons, blood flow problems are not given the consideration they should, in our attempts to understand the complex symptoms in ME/CFS. If they were, people who have ME/CFS could be advised to take easily available supplements – 6 g of fish oil per day, or 4 g of genuine EPO – or medically available substances – B12 injected as hydrocobalamin, or pentoxyfilline, which can in many cases address the blood flow problems and improve well-being. It continues to be a matter of both bafflement and regret that although Les Simpson’s many research papers can be found in PubMed, also in the book ‘Ramsay’s Disease’, the implications of his work continue to be ignored by the ME/CFS researchers and advocates. Many research articles, as in the above quotation, refer to manifestations which can easily be explained if the information available from hemorheology is taken into account.
Yes. It is my own subjective experience that blood flow is an issue. No blood, no oxygen, no other essentials to life. I’ve experienced actual muscle FAILURE when I push myself to simply walk about the house or grocery. So while I read of ‘pacing’, and while I live by pacing…I see the word ‘pacing’ as suggestive that CFIDS/ME patients feel just fine if supine. My experience is not at all like that. Post exertional malaise as an expression is ridiculously inadequate a description of the actual experience of muscle failure and breakdown. ‘Near death experience’ comes closer to describing what I experience. I imagine …key word is imagine…( I am not a scientist and this is subjective ) what is happening as akin to exertional rhabdomyolysis @http://en.wikipedia.org/wiki/Rhabdomyolysis @http://en.wikipedia.org/wiki/Rhabdomyolysis#Genetic_predisposition
That makes a great deal of sense to me. I had a physician ask me once if I ever felt good—and I do (first thing in the morning, if I’ve slept well, as long as I’m still in bed), but it doesn’t last! Everything I do costs me and, as the day goes on, I feel as if the energy is draining out of me through the soles of my feet and is gone. That’s ME/CFS.
RE: MARILEE. THATS WHAT I’VE BEEN SAYING FROM THE TIME I GOT SICK. IT’S AS IF I’VE BEEN HUNG UP, MY FEET OPENED AND ALL THE LIFE DRAINED OUT OF ME. ALSO I AM NOT JUST FATIGUED. I AM EXTREMELY ILL. I WAS FATIGUED WHEN I WOULD WORK FOURTEEN HOURS A DAY. THAT’S JUST A SIDE EFFECT AS IT IS IN CANCER, THE FLU OR ANY SERIOUS ILLNESS.
exhaustion that people get when they get a stroke or brain damage to me that for some, m.e/ c.f.s is a neuron-damage disease.
My experience of M.E is very different to the usual presentation in as much that FATIGUE is not a symptom. I feel extremely poorly on a constant basis and my whole body is stiff and painful. I can’t relate to Post exertional Malaise either as I can’t do stuff in the first place. Many brain scans have shown “abnormalities” and it was recently noted that I have poor blood flow to brain and my oxygen sats are on the low side. Not bad for a “psychological illness!!!!!
Exactly. You feel ill-viral symptoms, like having the flu but without the mucous (although I have that too, but due to allergies). It’s not general fatigue when even lifting your limbs is difficult, after repetition and then taking days to recover.
Vickie would you say your main symptoms are stiffness and pain? Which rest really does not help?
I think your story really illustrates the need to very carefully assess symptoms.
I wonder if you’re more on the Fibromyalgia end of these disorders…or it may be something else entirely.
I get what your saying. I laugh when all these studies say they have tested this and that. Myself I couldn’t get to a study, never mind do any form of exercise for them to test fatigue levels. The article is strange because I am fatigue on awakening and it gets worse, it present before I start the day and its all the time, which the article is saying is MS symptoms but as soon as I do anything I get the usual PEM or I should say the fatigue I already have gets worse until eventually I can nothing, not even talk. I feel ill with it all the time, that fluctuates now but ever present. its an underlying feeling of being ill which increases when I do things and it awful if I push myself, but like the fatigue it is always there.
Pushing myself means probably speaking too much, not doing any particular exercise, I wish. Three years in and very little change. Until I start to lose that feeling of being ill I can see no improvement, because that ‘ill’ feeling is telling me my body is not right, never mind the fatigue and all the other symptoms. I get what your saying about feeling ill, I am with you
Los: I very much relate to your comments. Thank you for sharing as it was validating for me. None of my friends or co-workers ( I work 10-12 hrs/week but nothing else–no cooking, cleaning, going out with friends or grocery shopping) can fathom what everyday is like for me. I know 90+ year olds who can do more than I can. My challenge is coping. How do you & others on this site cope with Cfs/me? I’ve only had this for 1 year and don’t feel like I’m really living life anymore. Yes I’m going to see a therapist next week. But seriously how do you cope with this for years? All of my family is deceased so I don’t have much support at all. Thanks.
Good luck Lynne! The first years are the hardest. You have to find a way to adjust to the new you (at least for now)…
Vicki your symptoms sound like fibromyalgia. That goes hand in hand with CFS. Have you been checked for that?
Hi Vickie,
Sounds like if pain and stiffness are big problems you could have Fibromyalgia as well as ME.
Is it muscular pain in many parts of the body without visible redness or swelling?
If so then it could well be fibromyalgia.
I know that ME in itself can cause significant pain, but, if you meet the criteria for fibromyalgia as well as ME/CFS it can be much easier to get doctors to realise that you have a lot of pain as a lot ofdoctors don’t understand that ME can cause a lot of pain, and with a fibromyalgia diagnosis (if you meet the criteria) doctors are more likely to give you pain treatments, especially as there are pain drugs specifically approved for fibromyalgia.
Even if the pain is caused by ME the drugs for FMS also are generally found helpful for people with ME who have pain too.
Your feeling generally unwell and poor blood flow to the brain are classic ME symptoms.
Do you get dizzy when you stand up? If dizziness on standing is a big problem for you, this could be causing the reduced blood blow to yoyr brsin.
in the UK studies have shown that people with ME experience a drop in blood pressure within 10 minutes of standing (called neurally mediated hypotension) and/or an increase in heart rate on standing (if at a certain level this is called POTS). both of these problems can cause reduced blood flow to the brain.
The good side to having either or both of these problems is that there are treatments that can help, especually in the case of POTS!
If you get dizzy on standing (or from lying to sitting if you can’t stand up) and this is a problem for you it may well be worth asking your doctor to investigate it for you. It involves standing up and having your BP and pulse measured several times within 10 mins of standing.
If this is inconclusive then a Tilt Table test is the next step which would determine if you have this problem or not.
However if I were you i’d make your oxygen sats the first priority.
The oxygen sats being low COULD be caused by ME BUT be careful not to assume that or your doctors to assume that without checking for other causes.
Even when you have ME or any condition you can still develop other conditions on top of that.
If I were you I’d discuss the oxygen sats with your doctor and ask him If he/she can check out the cause for you, as you may have a lung condition (or a heart condition) which if you do will need help with which you should seek sooner rather than later as it could get worse and be risky.
Are your sats below 90?
If so that shows you may have a condition.
If your sats are below 85 you may need to get it sorted more urgently.
Also, when you say that you don’t get post exertion malaise because you’re not able to do anything in the first place, what stops you doing things?
Is it the feeling generally ill and the pain?
Also you probably need to re-evaluate what ‘doing something’/exertion is.
For example, I am very severely affected and for me an activity of daily living – something really tiny – can cause me prolonged PEM. Such as talking for more than a few minutes at a time, or listening to the radio for more than 20 minutes (cognitive and sensory exertion), or being moved in bed.
I know I’m at the very severe end of the spectrum, but in ME exertion does not mean exercise even in relatively mild cases and definitely in moderate cases.
It could mean in a moderate case eg walking 10 minutes to the shop. Or going out for coffee with friends for a couple of hours and doing a lot of chatting.
Or for a bit less badly affected could mean going out for half a day.
Or working in a sedentary job (eg an office job) for 5 hours a day.
I think when you have ME you have to realise that exertion can be such small things, relative to how mild/moderate/severely affected you are to what degree.
You might not feel like these things count as exertion but to your body with ME this is exertion which is why you feel more ill and in more pain after doing things.
Anyway, I might be teaching grannie to suck eggs, and if I am then sorry about that! But I just thought It wouldn’t do any harm to mention it in case it may help you..
Please DON’T worry about answering my questions as I realise they are personal.
Mainly I’m writing them as questions for you to consider yourself and decide what to do based on that, rather than for the purposes of giving me answers or anyone else!
If you want to reply then that’s fine too but I don’t expect you to, I just wanted to offer advice… 🙂
Take care.
Hi Vickie,
Sounds like if pain and stiffness are big problems you could have Fibromyalgia as well as ME.
Is it muscular pain in many parts of the body without visible redness or swelling?
If so then it could well be fibromyalgia.
I know that ME in itself can cause significant pain, but, if you meet the criteria for fibromyalgia as well as ME/CFS it can be much easier to get doctors to realise that you have a lot of pain as a lot ofdoctors don’t understand that ME can cause a lot of pain, and with a fibromyalgia diagnosis (if you meet the criteria) doctors are more likely to give you pain treatments, especially as there are pain drugs specifically approved for fibromyalgia.
Even if the pain is caused by ME the drugs for FMS also are generally found helpful for people with ME who have pain too.
Your feeling generally unwell and poor blood flow to the brain are classic ME symptoms.
Do you get dizzy when you stand up? If dizziness on standing is a big problem for you, this could be causing the reduced blood blow to yoyr brsin.
in the UK studies have shown that people with ME experience a drop in blood pressure within 10 minutes of standing (called neurally mediated hypotension) and/or an increase in heart rate on standing (if at a certain level this is called POTS). both of these problems can cause reduced blood flow to the brain.
The good side to having either or both of these problems is that there are treatments that can help, especually in the case of POTS!
If you get dizzy on standing (or from lying to sitting if you can’t stand up) and this is a problem for you it may well be worth asking your doctor to investigate it for you. It involves standing up and having your BP and pulse measured several times within 10 mins of standing (or from lying to sitting if can’t stand)
If this is inconclusive then a Tilt Table test is the next step which would determine if you have this problem or not. This can be done even if you are bedbound but your oxygen levels would need to be stable before having this done as some people with ME desaturate on Tilt Table.
If I were you i’d make your oxygen sats the first priority.
The oxygen sats being low COULD be caused by ME BUT be careful not to assume that or your doctors to assume that without checking for other causes.
Even when you have ME or any condition you can still develop other conditions on top of that.
If I were you I’d discuss the oxygen sats with your doctor and ask him If he/she can check out the cause for you, as you may have a lung condition (or a heart condition) which if you do will need help with which you should seek sooner rather than later as it could get worse and be risky.
Are your sats below 90?
If so that shows you may have a condition.
If your sats are below 85 you may need to get it sorted more urgently.
Also, when you say that you don’t get post exertion malaise because you’re not able to do anything in the first place, what stops you doing things?
Is it the feeling generally ill and the pain?
Also you probably need to re-evaluate what ‘doing something’/exertion is.
For example, I am very severely affected and for me an activity of daily living – something really tiny – can cause me prolonged PEM. Such as talking for more than a few minutes at a time, or listening to the radio for more than 20 minutes (cognitive and sensory exertion), or being moved in bed.
I know I’m at the very severe end of the spectrum, but in ME exertion does not mean exercise even in relatively mild cases and definitely in moderate cases.
It could mean in a moderate case eg walking 10 minutes to the shop. Or going out for coffee with friends for a couple of hours and doing a lot of chatting.
Or for a bit less badly affected could mean going out for half a day.
Or working in a sedentary job (eg an office job) for 5 hours a day.
I think when you have ME you have to realise that exertion can be such small things, relative to how mild/moderate/severely affected you are to what degree.
You might not feel like these things count as exertion but to your body with ME this is exertion which is why you feel more ill and in more pain after doing things.
Anyway, I might be teaching grannie to suck eggs, and if I am then sorry about that! But I just thought It wouldn’t do any harm to mention it in case it may help you..
Please DON’T worry about answering my questions as I realise they are personal.
Mainly I’m writing them as questions for you to consider yourself and decide what to do based on that, rather than for the purposes of giving me answers or anyone else!
If you want to reply then that’s fine too but I don’t expect you to, I just wanted to offer advice… 🙂
Take care.
Vicki, have you been checked for “Babesiosis” and “Fifth Disease”? When I had both of those at the same time, I also had the extreme stiffness and painful muscles. Together, or separately, in adults, they both create what one would imagine advanced arthritis would feel like. I could barely move across my house, I was so stiff! (Babesiosis is a disease usually caused by deer ticks. My provider said, however, that scientists now believe other insects (such as deer flies) can carry & pass it on to humans. I should note, that I am not an ‘outdoor’ person, so I never would’ve imagined I’d get a tick! But, a few deer flies managed to get in my home that Spring & I remember getting bitten by 1 or 2. I now have permanently elavated liver enzymes, a permanently enlarged liver with liver damage & ascites (permanent swollen belly. – My belly looks pregnant now, at near 50 yrs. old, but it didn’t happen immed. after. I never used to have an expanded, pregnant-looking belly! It’s the “ascites” I developed from the liver damage.) Most providers **do not** even consider Babesiosis, as it’s rates of infection are growing in frequency in the U.S. (Occurring mostly in New England and Michigan; and its’ ‘sister-strain’ occurs in Western Europe.) Also, “Fifth Disease” (also called the “Slapped Cheeks Disease”), *usually occurs only in children!* I had no signs of a tick bite and no slapped cheek appearance! Hopefully this will help someone, even if this is not what you’re dealing with. (I now have extremely frequent, now greatly worsening fatigue & exhaustion, without the stiffness – since I was treated at the time of my infection.) Good luck to you Vicki! And I hope you find the help you need dear!
I am diagnosed with Fibromyalgie…this article can be written about me though..
My exercise test, on a bike with somthing on my face to meassure the oxygen, tells that the oxygen did’nt reach my muscles at all..
Even so afther years of doing excercise! It looks like i am doing well while sporting, for a while..And than i collapse..
Severe fatique, shortness of air…that will last for ours, days.
My condition is never going to get better…never in all the years of doing all sorts of sporting..it’s going more worse..
And now, i am 71, they say; yeah..it’s the age!
The pain and malaise are there a day, afther excercise,later!….with the severe fatique…What excactly good be the difference with ME/CVS and FMS?
Sorry, i am from the Netherlands, my Englisch good be not that perfect! 🙂 i hope you understand..
I am glad i found your articles…
You’re in the post-exertional malaise group with shortness of breath…I’m in the PEM group without shortness of breath. My guess is the the post-exertional malaise is worse in ME/CFS but present in FM. You can tell that by the emphasis PEM has assumed in ME/CFS…but not in FM.
I would guess FM is much more like ME/CFS than MS is because there’s more PEM in FM
Cort,
This is the first that I have seen anything about PEM with and without shortness of breath. I have looked for info on this, but haven’t found much. Can you refer me to more info?
After I overdo it and go into PEM, I find that I start breathing really hard not during the activity but for hours afterward, not panting, but breathing hard. Most times my heart rate monitor will be in my normal range even with this hard breathing. 6 months ago I was diagnosed with COPD (never smoked, pulmonologist said it was probably second hand smoke earlier in my life). Somehow I don’t think the COPD is the whole answer to what is going on with my breathing, so I would welcome more info.
What an interesting symptom of PEM. (Yet another one!) I’m afraid I don’t have any clues really. We are going to do a survey on PEM symptoms – let’s see if others have the same experience.
How does this fit with ME patiënts without pain? I know many patiënts who don”t have so much pain. I think this group is more FM. I see different groups; 1. Pain and fatigue, 2. Autonomic – and blood problems POTS and fatigue, 3. immune problems with infections and fatigue…
It’s such a fascinating question for me because pain is a big problem for me – but some people with ME/CFS have weakness without any pain. I was astonished to find that out.
How can these two groups not be very different?
This fits exactly with my experience. My mother had MS and did experience fatigue, good and bad days, was eventually unable to work, etc. But when we had family outings she would go along with us until she tired out, rest, then rejoin the group. It was when my 75 yo mother with 2 hip surgeries and decades of MS was pushing my wheelchair that I realized there was a real and substantial difference in our illnesses.
I have one neurologist who absolutely insists I have MS, although I have many differing opinions from other experts. This best articulates why I think he is wrong. I am also grateful to have some scientific backup for my observations because there is always a little voice in the back of my mind wondering if I am giving up the opportunity to get better by refusing MS meds.
My brother with MS says he has no problem with activity. He has trouble thinking and talking on the phone hurts him. Where as I can think OK but activity is a problem.
That’s what I’ve witnessed too. I know several people with MS, as well as saw some worse cases during nurse practice and have read accounts online. There are four categories of MS, even though it’s the same disease, as it progresses differently. A lot of those I know, can run rings around me, activity wise. They’re also more on the ball cognitivelt, unlike your brother. They can go out at night. An obvious difference though, is they’re more likely to use mobility aids such as walking sticks/crutches and scooters/wheelchairs, with some having constant or regular/significant mobility problems and others having a loss of feeling and movement. It’s the lack of actual movement when you want to, specific eye problems and dropped foot, numbness in MS, that seems to be different from the wiped out ability to do any activity repeatedly, muscle weakness/aches/pain, feeling ill with viral symptoms and specific cognitive problems that people with ME have.
Very interesting MsJustice !
So the people with MS have neurological problems that interfere with movement but they don’t have problems producing energy. The gap between two of the major fatiguing illness widens….:)
Thanks
This isn’t me at all. ME/CFS since 1988, constant fatigue that worsens with exercise, best in mid afternoon, stiffness in AM, PEM by night time even with pacing.
I have exactly the same pattern! Stiffness and difficulty concentrating and exerting myself in the morning and I’m at my best in late afternoon 🙂
Fatigue has escaped science since the beginning. Starting with polio and cancer they’ve never really been able to come up with a pathophysiological explanation- maybe because they just don’t care. I think if you’re not dying it’s just not important to them……
Agreed – it’s been a dismissed area of science, although it is growing. (There are quite a few studies on fatigue in MS… which is good because they’re starting to demonstrate that there are different kinds of fatigue.) I think it’s been thought of as a minor thing- which has made it difficult for the medical community to understand that fatigue can be pathological and disabling.
I have brain lesions only a few of which match the MS pattern. I was given a spinal tap and more evidence of MS showed up in my cerebral fluid. I then was referred to one of the foremost experts in MS at Georgetown University in DC. He spent six hours with me. At the end he determined that although I had some MS symptoms he felt there were enough differences between me from MS patients that I didn’t have MS. His diagnosis? Chronic Fatigue Syndrome. I told him that the definition of CFS states it’s an illness of exclusion and if I have physical signs I can’t have CFS and that many people think it’s mental. He said that was ridiculous that he sees many people with MS symptoms that actually have ME/CFS. He said his ME/CFS patients are terribly ill and anyone who says it’s in their heads have never been exposed to CFS patients. He also did a special kind of vitamin d test and said I was deficient in that. He also sent me for a sleep test and I have sleep apnea, which interferes with already disrupted sleep. Another thing he mention was that many of his ME/CFS patients were very athletic before falling ill. That was true in my case.
An enlightened doctor for sure…
I has diminished reflexes in left foot, numbness in my nose, fasiculations in my legs and problems with coordination in my left hand at one point. I was tested for MS as well. One point I saw double…I think I had some hyperintensities in my brain but nothing definitive for MS.
That was twenty years ago and MS never showed up and those problems diminished and finally disappeared….It was a strange episode.
I was very athletic as well. .
Hi carol,
Sorry to hear of all that.
That proves that the ‘all in the mind’ model of fatigue is flawed. Your specialist knows his stuff! There are many neurological and physical abnormalities in ME/CFS as research increasingly demonstrates and your case is a classic example of!
I only wish we had neurologists of that view here in the UK – there is not one neurologist in the whole of the UK who recognises the reality of biomedical research and what medical problems patients have in ME/CFS – literally!
Mainly because the NHS does not fund ANY routine testing to diagnose ‘CFS/ME’ apart from the most basic of blood tests to check thyroid, liver function, minerals/electrolytes, CRP (inflammatory levels) and full blood count – that is it!!!!
And their approach to ‘treatment’ is prescribed increasibg exercise which you’re supposed to ignore your symptoms and do however bad it makes you, and CBT to get rid of ‘beliefs you are ill’ !!!
Then when you don’t get better they think that you must want to stay ill!!!!
They call ME or ‘CFS’ as they call it ‘medically unexplained illness’ but they ignore all the thousands of biomedical research findings that show that it is not medically unexplained at all.
Medically unexplained is supposed to be for conditions that have demonstrated no physical abnormalities but that is not true of ME yet the UK powers that be are in denial.
Yet, they have banned all patients with a diagnosis of ‘CFS/ME’ from giving blood as a donor in case patients are the carrier of a virus that could be transmitted through blood.
Very much double standards – they’ll protect themselves from being sued but they won’t apply the same logic to recognising that ME patients are physically ill.
Worst of all, the UK department of health claim that they accept the WHO classification of a neurological disease – but the ‘CFS/ME’ clinics (which are actually only fatigue clinics treating fatigue of any number of different causes they never find out the cause of people’s fatigue as they don’t do tests. And the clinics don’t even address any of the other symptoms including post exertional malaise) treat it as if it’s a mental illness under the direction of national guidelines which recommend not to do any medical testing except basic blood test and only ‘prescribe’ psychological and damaging exercise treatments and claim these are ‘evidence based’. But this study that Cort’s written about, and many other studies demonstrate that ME patients have a physiologically abnormal response to exercise which causes damage and increased symptoms. I’m really glad to see yet another study proving this!
I hope one day this will change but I can’t see it happening any time soon.
Under the national guidelines in the UK ‘CFS/ME’ was listed as both a mental and behavioural condition and also as a neurological condition. Recently following a challenge, NICE removed the mental and behavioural category, which seemed a positive breakthrough.
However I found out today that NICE have now removed it from the neurological category too.
We are lucky to have our charities fighting our cause as without them we’d be completely opressed.
Best of luck to you, I hope you manage to find something that helps or you get some improvement over time.
By the way, I read a study recently which found that in 1 year’s treatment of CPAP for apnoea, previous brain abnormalities shown on scans significantly reduced – ie the damage was reversed.
So if you’re prescribed CPAP or similar for the apnea it’s well worth persevering with even if uncomfortable for that reason, as it may improve your ME symptoms, as well as for obviously the general CPAP benefits for apnoea of reducing risks of heart disease and strokes too.
Apnoea is also not uncommon in ME too.
Best wishes…
I wish I had your consultant! I am beyond certain that I have ME, even tho diagnosed with MS. I have no actual MS symptoms, but classic ME/PEM and finding it so frustrating that my docs over the years have dismissed this.
I have never felt fatigue was one of my top ten symptoms. I have always said that I have felt like I have the flu…sick…feverish…fluish…poisoned. I have had much trouble filling out the CDC questionnaire which asks almost every question with the word ‘fatigue’ in the sentence. I have felt I could never answer them honestly as fatigue is not what I feel.
It wasn’t until I developed an auto-immune issue associated with ME/CFS, with a crossing of the blood brain barrier, that I started experiencing episodes of fatigue or extreme sleepiness where I can barely keep my eyes open. This always seems to precede a flare of my spinal cord lesion and an increase in the inflammation and pain. This would make much sense to me as I read once where anyone who has had brain trauma, a stroke, etc., is not even asked by the neurologist if they have fatigue, as it is a ‘given’. Fatigue and brain injury go hand-in-hand. Perhaps this explains why MS patients have more fatigue (brain lesions and the crossing of the blood/brain barrier).
Though we all know we have CNS damage, unless we have new injury or trama to it, or flaring of our neuro-inflammation, as I do when my spinal cord acts up, than fatigue is not the main symptom of this illness.
PEM and exhaustion without recovery is a much better description.
my cousin is 71 and had MS since her late teens but WORKED, then had to be let @ go 50ys. old then she had energy to shop, shop, shop which i go out to eat and i am so EXHAUSTED, SICK, BRAINDEAD, WEAK, etc. just from that alone!
she talks forever on the phone to my sister while i have to avoid calls because i’m not well/strong enough to talk or even listen!!!
Very different kinds of fatigue!
There is another possible term (which actually seems to have arisen in psychiatry) which seems more “technical”, and thus “scientific”. It is little used, and therefore not be so “contaminated” as “fatigue” and “tiredness” (but it probably would not be long before its connotation would also become negative).
“Anergia” (sometimes spelled “anergy”). This means “without energy”.
A few years back, for quite a spell, I was noticing what I thought was a “strange” situation. I was fully awake (so my brain was getting at least some energy supply), but I did not feel like I wanted to move. This situation could last for some hours at a time.
On another subject, I also have been diagnosed with sleep apnea, and have been prescribed with a CPAP machine. I also have some sensitivity in the glands around my throat, and a little difficulty swallowing. It’s my intuition that it is my “slightly swollen glands” that are interfering with my natural sleep.
Thanks Cort, and everyone.
Thanks for reply Cort. My original dx was fibromyalgia then the neuro stuff kicked in. After brain MRI showed abnormalities a dx of M.E was added. I am unable to stand or walk. As I have MCS I am totally drug intolerant and so it is not possible to relieve any of my symptoms. I also have the usual gut problems (despite modified diet) so all in all although not bedbound I am very unwell indeed. A main concern I have is that the many people at the severe end of the spectrum are unable to take part in any of the research studies.
Thank you for your answer..i have to read and understand later..
I have ‘nt a very clear head (fibro fog) today..:-/
This explains so much. Anergy is a better term to use for the condition of no muscle energy. I have had tonic clonic seizures after periods of intense exercise like mountain bike race etc. They come 24-48 hours after extreme physical exertion. I actually had one during a race once and it was like I just suddenly lost all the energy in my limbs. I fell off my bike but my partner had the good sense to squeeze some electrolyte syrup into my mouth. This worked almost instantly. I remember the first episode of this loss of energy and it was while I was trying to use a sewing machine. I was so weak I couldn’t hold the fabric while it was going through but the scary thing at that time was I couldn’t think which direction the fabric should go. I definitely think there is some energy metabolism problem as when I’m bad I feel exactly the same as when I’ve run a few kms and the lactic acid has built up in my legs. After the run you go to stand up but your legs won’t work and they hurt and burn. That’s what I feel like when I’m bad. I call it fizzy muscles and the big muscle groups are the worst. I’m drinking a lot of sugar free electrolyte solution at the moment and I think I feel better for it. Still have a weird brain though. Asked someone today to pass me the yellow piece of paper on the desk and got angry when they said they couldn’t see it. Turns out it was pink. I could see it clearly but apprently I kept saying yellow! Propranalol worked for adrenalin rushes.
Just allow people with MS to use the raw material,pharmaceutical companies are just on the make. Anyone noticed the side effects of using sativex are the same as getting stoned ? Cannabis will not be legalised untiol the big pharms have got their cut.
http://tinyurl.com/mscannabis
http://en.wikipedia.org/wiki/Multiple_sclerosis
i didn’t know about such information.
Your experience of being suspended in a limbo where you have no desire to move for hours is something i have experienced. The first time i thought i was dead,but even that idea didnt get me to move! Ive had m.e. 10 years and was very ill with something else too. Apparently its a form of sleep paralysis, and tho it feels odd its not actually harmful. Your brain has woken up,but your body is still asleep. It happens in periods of illness or deep stress,but as i said no actual harm is caused. I hope this reassures you.
Hi,
First off, I came across your site and wanted to say thanks for providing a great resource to the multiple sclerosis community.
I thought you might find this list of 7 MS Facts You Should Know helpful because our readers have really resonated with it. It is especially helpful for loved ones who may not know a lot about a patient’s condition and outlook after a MS diagnosis:http://www.healthline.com/health/multiple-sclerosis/facts-you-should-know
Naturally, I’d be delighted if you share this article on http://www.cortjohnson.org/blog/2014/11/06/fatigue-disorder-multiple-sclerosis-taught-us-chronic-fatigue-syndrome/ , and/or with your followerson social. Either way, keep up the great work !
All the best,
Nicole
Nicole Lascurain • Assistant Marketing Manager
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