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mitochondrial dysfunction and fatigue

(39 Posts)
nonemus Fri 09-Sep-11 08:48:45

Anyone with a medical/scientific background who can tell me if there is a sound basis to the theory that chronic fatigue may be caused by mitochondrial dysfunction?

The background is that I have suffered from intermittent severe tiredness for a long time but have found my gps (moved house so more than one) unhelpful. I have had a load of blood tests (eventually, very reluctant gp) to rule out anaemia and fatigue and my blood sugar is normal. I've been told I was depressed (found my own way to cure that) and should exercise more.

Started to get palpitations and headaches caused, I believe, by the exercise as they stopped when I stopped doing as much. My gp now suggests I have chronic fatigue.

Mitrochondrial dysfunction does seem a possibility and I'm thinking of trying various supplements like co-enzyme Q10, d-ribose and NADH. I'm almost certainly vitamin D deficient and will spend more time in the sun (if we get any). However if possible I'd like a view on these supplements from someone who understands the science.

nightcat Fri 09-Sep-11 10:22:49

well, it makes sense, but having considered it with my ds I arrived at the conclusion that all you need is a really healthy diet.
Mitochondria are where cells produce energy etc, so the right nutrients need to reach them and the metabolic products need to be able to leave succesfully. Drs don't really look at the cellular level, more like at organ/function level, so I doubt GP would take it much on board.

My ds dx was progressive neuro problems due to cells dying, but the cause was not looked at at all. So to improve his health I tried various things (vits etc), but what really worked in the end was gluten free diet and there is plenty of scientific evidence that gluten is toxic for people who are susceptible to it. (Lethargy, tiredness etc imply poor oxygenation).

Someone also explained to me that if the problem was structural in terms of cells etc, my ds would probably have never been even born if he wasn't able to process anything. Progressive conditions often mean that there is a toxic build up somewhere.

I would look into diet if I were you.

nonemus Fri 09-Sep-11 13:00:01

thank you. A gluten free diet did remove my symptoms for years but recently they have returned and I'm still gluten free. So clearly I need something more than that. We eat lots of vegetables and at the moment we have too much fruit so are eating lots of that.

CFSKate Fri 09-Sep-11 20:47:34

If there is anyone there who understands the science, you might like to view this www.ijcem.com/files/IJCEM812001.pdf

Highlander Sat 10-Sep-11 13:03:27

My PHD was mitochondria.

If you seriously think you have mitochondrial disease, you will need to convince your GP to refer you to a neurologist.

You'll need a muscle biopsy done to check the actual function of each of the respiratory chain complexes. They will probably then go on and do molecular analysis to check for mutations in any complex that has reduced function.

There are a number of big diseases (MERRF, MELAS, LHON), but equally many people with vague symptoms in a variety of organ systems.

It's been a while, but I seem to remember a trial suggesting that Q10 supplementation wasn't helpful.

Most people with mild mitochondrial disease sadly take about 2 years being punted about before a firm diagnosis is made.

For muscle wasting isometric exercise (resistance/weights) has been shown to be helpful, probably by boosting the numbers of healthy mitochondria.

Good Luck!

nonemus Sun 11-Sep-11 07:41:26

If I want to see a neurologist I suspect it would have to be private and we don't have insurance. The best suggestion I've had from my medics was that I should see a specialist in care of the elderly. I suspect I looked insulted by that as there was a hasty mention of an interest in chronic fatigue. I was wondering about paying for Dr Myhill's tests. Highlander if you had a spare moment to look at CFSKate's link and say if you thought the test would work it would be very useful.

My family are a sickly lot with pernicious anaemia, low thyroid and atrial fibrillation, to mention just some of the problems. I was given a months supply of high dose Q10 (not by my gp) so may as well try that one.

I have a set of weights and I'm quite concerned about deconditioning so I will try to restart using them.

nonemus Sun 11-Sep-11 07:52:53

highlander I am researching what you said and came across an article explaining why a muscle biopsy might show normal results and therefore not be helpful - it's here if you are interested http://www.prohealth.com/library/showarticle.cfm?libid=13611

The weights suggestion looks very promising if I can manage the exercise.

Highlander Sun 11-Sep-11 11:54:50

Mitochondrial disease is very complex. Genetically, you can have quite a high load of mutated mitochondria with very little I'll effects (hence normal biochemistry from a muscle biopsy). This 'threshold' varies between individuals.

You need to speak to your GP and get a referral. You could print out a mito disease review, let him read it then ask if he thinks a referral is appropriate.

Please don't try and diagnose yourself and subsequently try all sorts of over the counter supplements.

nonemus Mon 12-Sep-11 07:24:21

the problem at the moment, Highlander, is that I don't have the physical or emotional energy to argue with my gp. Last time I saw them I had to come straight home and lie down for quite a time to recover. Trying the supplements is a way of possibly getting up the energy to seek a referral. My partner is not the type to stand up to anyone, I have no-one to argue the case for me.

I might write to my gp but I'm trying to use the net to find someone who might help if I was referred to them. There is no point in using a limited energy reserve on a trip to someone who tells you its all in the mind, I need to find someone who can suggest how to increase my energy stores. If supplements might do that then I'll try the supplements. So far my gp's advice (exercise more) has driven me into a far worse problem than I had before.

CFSKate Mon 12-Sep-11 10:16:53

Dr David Bell says there is a distinction between what most clinicians think of as mitochondrial disease, and the kind of mitochondrial dysfunction seen in CFS.

www.investinme.org/Article-242%20Bell%20Mitochondria.htm

magso Mon 12-Sep-11 11:22:45

I am intersted in the underlying mechanisms in CFS ( because I have ?PVFS) and have read Dr Myhills papers. It all seems to make sense but I do not have the right research background to judge. I have been ill for 3 + years. After reading these papers (and discussing with my GP) I have added a couple of suppliments one at a time starting with vit D ( Christmas) at the level recommended for those not being monitored. I do think it has helped. Magnesuim oil ( skin spray) was my next thing. I am uncertain how helpful this one is - but I get less cramp now.
As an aside i check my blood oxgen because I have a little monitor following lung problems. There does apear to be a correlation to how unwell I feel as how below normal my O2 sats is. So I am wondering if there is any reasearch on this? ( It might just be me). but I wondered as mitochondria are in charge of energy production for all cells including those of the heart - well if they are underfunctioning then there might well be a correlation.

MrsSnaplegs Mon 12-Sep-11 11:51:33

nonemus

I would suggest the best type of specialist I have seen who has an understanding of CFS issues is a rheumatologist, I have been with the same one for 3 years now.

I have had CFS for 15 years and have got to the point where most people are not aware of my condition unless I discuss it with them i.e. I can function relatively "normally". I say relatively as my level of fitness was above that of the average person on the street prior to my ilness so now although I am only functioning at about 75% of my normal for others this would be quite fit - confusing.

Over the years I have tried all sorts of treatments and "alternative therapies", I looked at Dr Myhills work with my GP a couple of years ago. I can honestly say the best thing I have found for me is a proper supervised structured graduated exercise plan (written specifically for me and my capabilities), pacing, CBT and relaxation therapy.

CFS is an awful invisible illness to live with, people do not understand , you will always get someone saying - oh but I'm tired all the time it's part of being a parent isn't it. They don't understand the fatigue causes pain not necessarily tiredness, that the tiredness is often mental as well as physical and that it can stop you doing even simple things like reading a book or eating a meal.

I have to say I understand the logic of what Dr Myhill is saying but my GP didn't seem to think there was any basis in it and he was really supportive of helping manage my condition, I am lucky I have a GP who listens and understands and a supportive consultant. Many of the problems with care of CFS in this country are caused by lack of interest from some in the medical profession.

I would say find what is right for you to help you manage.

Go back to your GP - ask for a referral to a rheumatologist who specialises in CFS, ask to be referred to physiotherapy and Occupational therapy for ways to help manage your condition. Ask if you can be referred for CBT. Start keeping an activity/fatigue diary. Read about pacing, learn to say NO!

Happy to answer any other questions if anyone has them.

nonemus Mon 12-Sep-11 14:42:25

thank you, Mrs Snaplegs. I don't know if I have CFS as I don't get pain, except the sort of muscle pain that goes with exercise. However as I've spent half the morning lying on the bed without the energy to read a book I'm beginning to think it might be. Mitochondrial dysfunction does seem to fit. I've been doing my own version of pacing for years, so well that people outside my family and close friends have no idea anything is wrong, and as this current problem is caused by exercise the idea of a graduated exercise plan doen't have much attraction right now. Could you say something about how that works, though? I've read about CBT but that seems to be just about resigning yourself to doing less? I've reached that level of acceptance anyway.

I'm trying to contact people in the local support group to see what the local "specialist" is like.

MrsSnaplegs Mon 12-Sep-11 15:55:02

The muscle pain you describe is what I live with on a daily basis but I also unfortunately get joint pains now as well. Didn't origianlly sadThere is also an element of mental fatigue with CFs hence the not being able to read, I also had trouble speaking. Light intolerance, food and smell intolerences - the list is endless. As I said I am not and never will be back to my pre illness state but I manage.

The best way I have heard it explained is that your body doesn't process lactic acid as well so when your muscles get the post exercise ache it lasts longer and hurts more tyhen for "normal" people.

Pacing seems to be easy to understand but you have to be very disciplined, you need to remember that little things such as getting dressed, cooking a meal, reading a book even watching TV use energy. As someone who has CFS you only have a certain amount of that energy per day. I use relaxation therapy to put ordered downtime into my day - that doesn't mean having a crafty afternoon nap(it will make you feel worse) or lying on the bed reading - that is still using energy! You need to find a relaxation technique that works for you - I use a system called Pzizz which is downloadable from iTunes. "Book" time into your day to take this realxation time regularly.

Graduated exercise as well needs to be something that is done properly - it isn't something you can rush which is why I said to ask your GP to refer you to a Physio that maybe has some experience with CFS - you only get 6 sessions on NHS AFAIK but even that will help.

Keeping a diary will let you know what you can currently manage and use that as your starting point, if anything if you are needing to have a rest then I would take it back a stage and do less for a couple of weeks. Then plan exactly what you can manage e.g walk to corner shop - and do that every day for at least 4 weeks. Even if you feel like you could do more - don't as that will only take you backwards. Once you can do that confidently for 4-6 weeks then add in another small stage walk to the corner shop and back and then walk to the lampost at the end of your road and back -again for 4-6 weeks.

When I talk about graduated exercise I am not talking about going to the gym or running or going to an exercise class, just basic walking. The more exercise you do the more endorphins your brain releases and the easier it is to cope with some of the symptoms. If you have a bad day you still need to try and maintain the same level of exercise.

Think of pacing as being given a set of 15 teaspoons when you get up in the morning. Each activity you do - making a cup of tea, playing with the children, doing your hair will take a certain amount of "teaspoons" - when you run out of teaspoons you don't get any more until tomorrow. Prioritise how you are going to use your teaspoons, work out if you can make an activity use less teaspoons e.g I used to have long hair - doing it for work was a real pain (literally in my arms) so I had it all cut off into an elfin crop - takes me 30 sec to do now and I don't need a hairdryer or to tye it up - 3 spoon activity down to 1/2 spoon. hoovering the floor - this used to be a real killer for me - solution, sit on the floor to do it (cylinder not upright hoover) and just do 1/4 of room at a time - have a break in between each section. Only do 1 room a week or 1 a day whateve you can manage.

I went from being unable to walk up the stairs in my house (moved bed and everything donwstairs) to being able to walk up the stairs to my office regularly (54 steps I'm in the attic) - it hurts to get to my work office but i know i can do it now.

I found much of the improvements i was able to make came when I accepted my condition - I was diagnosed when people still called it yuppy flu grin and I refused to believe I had it as I wasn'y a yuppy!

It has taken me a long time to get this far but it has been worth it, especially as I am finally accepting that it may be better for me to be medically retired from my job (public sector) and consider a new "career" which is less demanding.

Happy to help however I can

Mrs S

nonemus Fri 16-Sep-11 08:38:45

magso I suspect there is not enough oxygen in my blood, I may buy one of the meters. Magnesium is known to help with cramps, whether it helps CFS or not.

MrsSnaplegs have you tried a gluten free diet? I've been reading the action for ME site and have discovered suggestions that dark chocolate, probiotics and l-carnitine supplemented by omega 3 may help. I also have a strong suspicion that keeping blood sugar stable is going to be important, I know I feel better when I eat so am trying to eat little and often.

As we have probiotic yoghurt near its use by date I'm currently trying that and a few squares of dark chocolate daily on top of Q10. I'll add L-carnitine when I can get some. I'm feeling a little better so intend to try going out today and if that doesn't cause a setback maybe I'll see my gp next week.

magso Fri 16-Sep-11 20:53:31

ooh I have noticed I need to eat little and often! Its probably why I have got fatter - I can pick up a bit with a hot chocolate! Now a reason to add chocolate!! I get very sweaty and shaky easily, especially at work when pacing myself is harder. I have been taking Lcarnitine also but forget it most of the time and have probiotic yogurts. I would prefer to have expert guidance. I downloaded a bookfor my Ipad coping better with cfs/me ( sort of CBT) which I think has been helpful.
I have never seen any comments or research on blood O2 sats and ME - I just wondered. If there is a correlation ( and there might not be of course) it could be a simple test too.

MrsSnaplegs Fri 16-Sep-11 22:55:23

I have done wheat free dairy free alcohol free enjoyment free up the ying yang it's harsh on QUALITY of life you need to weigh the pros and cons of what works for you. I can't do it, it doesn't make enough of an improvement for me for it to be worthwhile. Living with this long term means taking enjoyment from what you cangrin love the life you can have not the life you think you should havegrin

nonemus Sat 17-Sep-11 10:05:35

for me gluten free was a massive improvement, I went off it and was ill again so no question now about going back on to it. I can eat reasonably well too, although gluten free bread is a poor substitute for the real thing. However a glass of alcohol helps me sleep so I wouldn't give up that one smile

magso it's only dark chocolate that the research is on and there is not very much research. However I agree about taking pleasure where you can so dark choc is firmly on my agenda now.

I haven't seen anything on blood 02 and ME but there is some research suggesting that the volume of blood pumped is lower in those with ME. I just feel like I'm not getting enough oxygen and would be interested to know if that is true.

It does make you wonder about things like accupuncture and energy flows. I may try acupressure, I don't like needles.

TalesOfTheUnexpected Sat 17-Sep-11 20:38:20

Don't want to hijack the thread but has anyone point me in the direction of any further information of Mitochondrial Disorder Type 111 deficiency. (Type 3)??

A muscle biopsy in my son showed this but there was no further information or studies available as to what this may mean for his future.

nonemus Sun 18-Sep-11 08:09:43

Tales how old is your son, who did the biopsy (which hospital) and what have they told you so far? What symptoms does your son have and if you have other children do they show any problems? You need some really expert advice and that may be hard to find.

Generally I'm afraid there isn't much in the way of treatment for mitrochondrial disorders yet, there is quite a bit of research going on, mostly in those looking at the elderly! I did find a study suggesting vitamin K and C helped a child but I was using my netbook and I can't find it again now I've moved onto the computer.

So far the reaerch I've found on general mitrochondial disorders mostly seem to agree that omega 3 fatty acids (fish oil) and vitamin D3 (sunlight) are important. Co-enzyme Q10 gets quite a few mentions as does L-carnitine. Antioxidants are clearly important so a good healthy diet. There is some research on telomerase supplements for mitochondrial dysfunction generally, they are very expensive.

TalesOfTheUnexpected Sun 18-Sep-11 17:13:00

nonemus Thanks for your reply. Sorry to hear of your problems and I hope you are feeling a little better.

I think I'm grasping at straws really. I'm frustrated that my twin boys have never had a firm diagnosis of the cause of their problems. They are 6. One of them had a muscle biopsy at Pendlebury hospital In Manchester which showed a complex III deficiency but after being referred to a Genetic Specialist, they said there was no known or well documented cases of what this could mean. We've been dismissed from the hospital unless the boys start to regress (lose existing skills).

I have 3 children. One is fine. The twin (non-id) boys are the ones with problems. The have ocular albinism, global developmental delay, they attend a Special Needs school and one has leukaemia and is being assessed for Autism.

Like I said, I'm clutching at straws but any mention of Mitochondrial Disorder on any forum makes my radar go up!

Good luck.

nonemus Sun 18-Sep-11 20:20:30

mitochondrial dysfunction has been found in autistic children www.sciencedaily.com/releases/2010/11/101130161521.htm

The problems is that even if it is implicated in your twins' problems it doesn't help much as there is currently no accepted treatment. You could ask your gp if it is worth being referred to this service in Manchester, your gp might know if they offer any test similar to Dr MyHill's tests. www.cmft.nhs.uk/young-person-zone/our-services/chronic-fatigue-syndrome-myalgic-encephalomyelitis.aspx

You may have seen some people talking about gluten (and sometimes casein) free diets for autism. Sheffield do urine tests that are supposed to help identify if possibly autistic children have problems with gluten, you have to pay for them.

When the medical profession offer no help it's worth trying things that are inexpensive and harmless like a healthy diet with a lot of antioxidants. They could probably learn to like dark chocolate smile. I'm sorry it isn't going to be much help now but there is research going on, keep watching the forums.

silverfrog Sun 18-Sep-11 20:25:56

sorry to butt in - it is Sunderland that do the urine tests (unless they have moved again - apologies if this is the case!) - formerly Sunderland ARU, now know as ESPA (I think! - dd1 was tested a long time ago...)

mito stuff is weird. I haven't managed to get dd1 throughly tested yet, but dd2 (complicated history, walks a very fine line between ASD/NT) had problems when she was a baby, and was found to have mito issues.

Certainly not enough is known about this area, and even when tests throw up results such as hers, not enough notice is taken...

nonemus Mon 19-Sep-11 05:37:10

you're right silverfrog - brain fog, I think smile. I did a search and contact details here www.autismndi.com/faq/display.asp?content=FAQ&shownews=20040922164284

Mitochondrial dysfunction isn't really a diagnosis, either. It's something that happens with age (so a lot of research is in departments looking at the aging process) and perhaps in response to infection in those with genetic susceptibility. It may be a result of damage by free radicals so antioxidants may help but it could be a slow process. If you can find someone to test for Q10, carnitine or D3 deficiency they can be remedied, I suspect it's easier to try the supplements and see if they help than to find someone to do tests.

RnB Mon 19-Sep-11 06:30:13

I had CFS as a teenager - back when it was very much considered 'all in the mind' confused

I tried pretty much everything to help it, but eventually overcame it through diet. It can be dull and boring bur it really helped. I was dairy free, sugar free and gluten free. I only ate wholegrains. I had all of my vitamin/mineral levels tested and took what I needed too. I also had a lot of mercury in my system so took the remedy to that (getting rid of the mercury completely got rid of my 'brainfog' - sometimes I couldnt even READ). I also had terrible candida - this diet got rid of that along with bacteria supplements.

I got so much better within about 18 months. 15 yrs on I would say I now am 95% better. I live a normal life. I would say I probably pick up more viruses than the average person, but none of my friends know about the CFS. I have relaxed on the diet but if I start eating a lot of crap the familiar symptoms start returning.

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