I'll try to keep my story brief and then get quickly on the the main point.
For almost twenty-two years now, I have been sufferring with a chronic unexplained illness. These are the main symptoms I have;
Brain fog
Unexplained fatigue
Poor recovery after standard physical or mental exertion
Constant indigestion
Persistent Thrush
Muscle weakness
Detoriating vision (about twenty pairs of glasses over twenty-two years)
Balance problems and dizziness (not vertigo, but sharp turns can cause stumbles and falls)
Insomnia
Depression (Caused, of course, by all the above )
There's a host of other lesser problems, but those listed are the ones which make it near-impossible to live a constructive life. Like most of you, I have had countless different tests and gone through usual story of unsympathetic doctors, unemployment, broken relationships, fear and self-loathing. Finally I got some coins together, took myself out of the medical mainstream and paid to be treated at a private clinic which specialises in undiagnosed illnesses.
The first round of test results pointed to me having chronic fatigue. I wasn't really happy with this diagnosis, because the little I knew of CFS suggested it was a catch-all term for a psychological disease. Of course my doctor informed me that this is not the case and that the clinic had further tests which could determine the biological basis of a patients CFS. (I'm not sure I'm allowed to mention the clinic, so I won't, but I did as much research as I could before going to them and the tests they offer are cutting-edge, micro-biological science). The second round of tests revealed that my Mitochondria are severely underperforming. I had never even heard of Mitochondria before going to that clinic.
I have cut and pasted from a medical article below which explains what Mitochondria are and why they are so important and cause so many problems when they don't work well. It can also help explain why one person's CFS can be so different from anothers.
The main thing is, fellow sufferer, I'm not going to assume that you are any more a medical expert than I am, so it may be you are unaware that the cause of your CFS **MAY** be the same as mine. So if, (after doing your own research please!) you feel pursuing mitochondrial investigation may help you, then go for it.
As for me, I am currently following a diet regimin (on which I have felt better than I have for years) and am about to go for another round of tests to try to help with my specific set of symptoms. Unfortunately, there is no current cure for Mitochondrial disease (though information is changing all the time) but let's face it. Half the battle with chronic illness is being able to detail exactly what it
is.
I will update you on my progress in about two months or so and I'll try to reply to any queries that this post generates. But i read so much pain and hopelessness on this board that it was all I could do to try and offer some kind of outlet. Please stay strong, brothers and sisters. All we have is each other.
Last edited by HBMod07; 09-24-2008 at 06:04 AM.
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Re: Chronic fatigue could be Mitochondrial disease
Hi all. This isn't exactly the update I promised, more a request for help. I am extremely sensitive to medication and suffer side-effects with almost everything I take, even aspirin. Because of this I haven't tried any of the brand names which are supposed to help with brain fog (my worse CFS problem). As I posted above, my new diet is helping, but I'm going to need to be really sharp and focused in the next two months and I'm willing to try any short-term stimulant that you guys have found to be well tolerated. Any ideas? Has anyone taken Ritalin? I know it's not strictly speaking a CFS drug but I have heard it passes through the system quickly and maybe this is what I need. Help please.
PS All you mothers out there and people that still have to work, I don't know how you cope. My heart goes out to you.
Re: Chronic fatigue could be Mitochondrial disease
Hi beauty Cochran. I don't have Narcolepsy. Sorry to hear you have that and CFS.
I read something about someone else on this board who had CFS and narcolepsy, I can't remember which thread or poster though. I'm pretty sure it was one of the top ten current threads on this CFS board. If you have time to trawl through them, I'm sure you will find the poster/posts I'm talking about. Good luck.
Re: Chronic fatigue could be Mitochondrial disease
Quote:
Originally Posted by Grambo
Good post.
A few other supplements that can be taken include D-Ribose and NADH.
Something like Ritalin or adderall could be helpful for treating the symptoms of fatigue and add a little focus and concentration to the table.
Have tried both suppliments and I am already on antiNarcoleptic medication, with CFS on board with the Narcolepsy, it can only keep one awake, but all the other symptoms don't go away.
Re: Chronic fatigue could be Mitochondrial disease
I do take Ritalin 40mg LA in the morning along with many other meds due to other conditions. It does help with energy for a short while but does not last as long as it should (8 hours) which has a lot to do with the other meds I take. Jenn
Re: Chronic fatigue could be Mitochondrial disease
Quote:
Originally Posted by BeautyCochran
Have tried both suppliments and I am already on antiNarcoleptic medication, with CFS on board with the Narcolepsy, it can only keep one awake, but all the other symptoms don't go away.
Hi BC. I don't know if you saw my reply to you earlier post? Here it is again anyway :
Hi beauty Cochran. I don't have Narcolepsy. Sorry to hear you have that and CFS.
I read something about someone else on this board who had CFS and narcolepsy, I can't remember which thread or poster though. I'm pretty sure it was one of the top ten current threads on this CFS board. If you have time to trawl through them, I'm sure you will find the poster/posts I'm talking about. Good luck.
Re: Chronic fatigue could be Mitochondrial disease
Quote:
Originally Posted by Jenn4508
I do take Ritalin 40mg LA in the morning along with many other meds due to other conditions. It does help with energy for a short while but does not last as long as it should (8 hours) which has a lot to do with the other meds I take. Jenn
Thanks for that Jenn. I think i'm leaning towards trying Ritalin if I can get it as that seems the most tolerated stimulant. Do you have brain fog? Does ritalin help with that as well? I have tried D-Ribose but all it did was keep me awake at night, didn't do muc for my concentration. that's what i really need help with.
Re: Chronic fatigue could be Mitochondrial disease
I take alot of meds and I do mean many. One of my docs gave it to me to help with the energy issue to counteract some of the effects of the other meds. I told him I felt like Elvis Presley sometimes. I have 5 docs that I have to see. Yes, they all know about each other and what they all prescribe and they all work together. I do have the brain fog really bad. My doc had me on 20 mg LA and I was to take it at 6 am and again at 10 am even though it is supposed to last 8 hours. It did help with the energy quite a bit and did help with the brain fog until about 1 or 2 pm. However, my insurance company would not pay for me to take it that way and said the only way it would pay for it was for me to take a 40 mg LA one time per day which I take with my first dose of meds at 6 am. This med change was made the end of June and I can really tell the difference, it is just not working out... I think it is a shame that the insurance company has the right to tell the doctor's how to prescribe the medications.
I am not sure if it is the brain fog or short term memory loss or a little of both however, I don't cook very much at all and if I do, I have to carry a timer in my pocket or I will totally forget and I am afraid of burning the house down.
Sorry for rambling but that is the story on the Ritalin... Hope it helped some. Jenn.
Re: Chronic fatigue could be Mitochondrial disease
Quote:
Originally Posted by Jenn4508
I am not sure if it is the brain fog or short term memory loss or a little of both however, I don't cook very much at all and if I do, I have to carry a timer in my pocket or I will totally forget and I am afraid of burning the house down.
Sorry for rambling but that is the story on the Ritalin... Hope it helped some. Jenn.
No need to apologise Jenn. And i can totally relate to the cooking worries There was a time i attempted some electrical DIY and almost killed myself because I forgot i switched the power on Unfortnuately, I still have to do the odd bit of DIY every now and then so if I dont post for a while, you 'll know why
I don't know if I should say this, but discovering the CFS thread ont his site after my diagnosis has been such a source of comfort. Just knowing that i'm not alone, especially in this feeling of "premature dementia" that has so messe dup my life. I'm sure you all know that i mean i wish none of us had to go through it but at least all of us on here no were not alone.
One last question if you dont mind Jenn. (Or anyone else who whants to answer) When you get your brain fog to you get headaches if you try to problem solve? Years ago, i only used to get headaches if I tried to problem slove for about an hour or so. Now, almost anything mentally stressful can bring on a headache;
If i read fiction (non-fiction is still okay)
If I try to plan two-three months ahead in my mind
Meantal arithmetic
Problem sloving (i.e trying to work out where to put a new table in my room)
If i watch television or cinema for more than two hours straight (especially films and dramas)
Concentrate on anything for fifteen minutes or more
And here's the thing: I always get it worse on my right-hand side (when i do get headaches on the left side as well, that's when I'm really, really gone). Anyone else get brain-fog headaches like this?
Re: Chronic fatigue could be Mitochondrial disease
I understand what you are talking about with the headaches with the brain fog. I will try to explain this the best possible way I can due to brain fog at this time. I suffer with migraines also but there is a difference.
I have to see 4 docs every month no matter what. Even though I know the route to each one, a couple of days before an appointment, I will keep looking in my calender book that stays in my purse always and make sure that I keep focus of where I need to be. I will look at it a million times. I will also start mapping out the route to the office in my mind. This will bring on a headache that will stay because I am a nervous wreck that I will still go to the wrong doctors office. I have done it a couple of times before. This headache is different from my migraines.
You would think that taking the Ritalin should help me focus however, in my case, I am prescribed Ritalin for use with my energy level. Ritalin is normally used in people with ADD or ADHD for attention issues and to help them focus.
Re: Chronic fatigue could be Mitochondrial disease
Quote:
Originally Posted by Jenn4508
I have to see 4 docs every month no matter what. Even though I know the route to each one, a couple of days before an appointment, I will keep looking in my calender book that stays in my purse always and make sure that I keep focus of where I need to be. I will look at it a million times. I will also start mapping out the route to the office in my mind. This will bring on a headache that will stay because I am a nervous wreck that I will still go to the wrong doctors office. I have done it a couple of times before. This headache is different from my migraines.
Thanks for replying again Jenn. It's not exactly the headache I was talking about but I can definitely relate. You know that you are prone to making mistakes so you try to do all the pre-plannning you can to makesure you don't make errors and that brings on a headache. When i worked i had headaches like this all the time. Every day!And even now i avoid new situations, or meeting people in new places because the chance of missing the way, making erroes I can't plan for, etc is just too high. What shall we call this? "Nervous" Headache? "Fear of Error" headache (FOM) C'mon! it's us who suffer it, why shouldn't we name it?
I have found keeping a diary helps for routes and dates etc, but (and only someone with CFS will understand this) sometimes I forget to look at my diary
Again, thanks for replying. Surprised the ritalin doesn't help with the fog though? But at least all your Docs are working together am having some serious batlles with some of mine here
Re: Chronic fatigue could be Mitochondrial disease
Sorry you are having trouble with some of your docs... You can name the headaches anything you want I agree.
The reason the Ritalin doesn't work for the fog is because Ritalin is used for ADD/ADHD which helps with concentration for people with these learning disabilities, I know because my son is ADD. If someone takes it that does not have ADD/ADHD, it is more like an energy pill. That is the reason my psychiatrist gave it to me, to help combat the chronic fatigue. Hope that helps. Jenn
Re: Chronic fatigue could be Mitochondrial disease
Quote:
Originally Posted by Jenn4508
Sorry you are having trouble with some of your docs... You can name the headaches anything you want I agree.
The reason the Ritalin doesn't work for the fog is because Ritalin is used for ADD/ADHD which helps with concentration for people with these learning disabilities, I know because my son is ADD. If someone takes it that does not have ADD/ADHD, it is more like an energy pill. That is the reason my psychiatrist gave it to me, to help combat the chronic fatigue. Hope that helps. Jenn
My mainstream docs seem to come in two sizes... dumb and dumber. I only ever get anything done when Ive paid for it.
Pity about the Ritalin not working for fog... my energy levels are bad, but not terrible... but my fog can be terrible. I'm right-handed and the other day I was looking for my phone then realised i was holding it in my left hand Years ago I would have been really down about things like that butnowadays I just laugh. what else can i do? Strangely enough, today is a day that I feel really good
I think Iwont be able to post for a while now as I have medical appts and family issues for the next month or so, but thanks a lot for your replys Jenn. I hope you have better days ahead.
Re: Chronic fatigue could be Mitochondrial disease
My brain has finally turned on!! I have been on Enada NADH for the last month and can tell a big difference in my mitochondrial problem. Just hope it will continue!! Tried CoQ10, to turn the furnaces on, but it didn't work. Tried Provigil, but couldn't take because of the side effects. This stuff not only works on mitochondria, but helps with dopamine, which will lift your mood substantially!!
Re: Chronic fatigue could be Mitochondrial disease
When I need to be especially sharp and focused, my dr. has allowed me to use modafinal prn (as needed). I have a script for 30, and as I have had CFIDS/ME for 18 years, and am totally disabled by it, I've only used it two or three times in the past year.
One must take it early in the day; it takes about one hour to work, and can last me and my brain about 8 hours. It can make one a little "jittery", so start out with 1/2 tablet to start, to see how you feel.
The brain fog with CFIDS/ME is one of the worst symptoms to deal with; if one has EBV, it does affect the brain, and is one of the few viruses that can cross the blood/brain barrier, wreaking havoc within.
I understand that there is a dr sarah myhill in the UK, who is doing some groundbreaking work with patients, and I hope that is who you are seeing. I think we can mention drs names here.
I am new to this site, but I have had CFIDS/ME for 18 years, and I am just appalled at how the drs are still treating patients. It is truly a medical crime in my opinion, and when the truth is known about this disease, many egos will be depleted a bit, I hope.
I hope your treatment plan works really well for you, and you get on the road to recovery very very soon.
BTW, do you know of jonathan kerr, the dr over there who did the genetic studies? you can do a search under his name and find the 7 subsets of the illness, to see which one you fit the best. His work is stunning and I believe it will be definitive enough to be rewarded someday.
Re: Chronic fatigue could be Mitochondrial disease
Hi - your story is so similar to mine except I have been ill for two years - And now I have a diagnosis of mito disease instead of chronic fatigue. When you think about the symptoms and treatments for CFS, most really are treating mito disease anyway - except there is more specific research into the exact breakdown in metabolic pathways in mito disease and treatment of these - Id love to hear how your treatment progresses and I will do the same -
Quote:
Originally Posted by Makzim68
I'll try to keep my story brief and then get quickly on the the main point.
For almost twenty-two years now, I have been sufferring with a chronic unexplained illness. These are the main symptoms I have;
Brain fog
Unexplained fatigue
Poor recovery after standard physical or mental exertion
Constant indigestion
Persistent Thrush
Muscle weakness
Detoriating vision (about twenty pairs of glasses over twenty-two years)
Balance problems and dizziness (not vertigo, but sharp turns can cause stumbles and falls)
Insomnia
Depression (Caused, of course, by all the above )
There's a host of other lesser problems, but those listed are the ones which make it near-impossible to live a constructive life. Like most of you, I have had countless different tests and gone through usual story of unsympathetic doctors, unemployment, broken relationships, fear and self-loathing. Finally I got some coins together, took myself out of the medical mainstream and paid to be treated at a private clinic which specialises in undiagnosed illnesses.
The first round of test results pointed to me having chronic fatigue. I wasn't really happy with this diagnosis, because the little I knew of CFS suggested it was a catch-all term for a psychological disease. Of course my doctor informed me that this is not the case and that the clinic had further tests which could determine the biological basis of a patients CFS. (I'm not sure I'm allowed to mention the clinic, so I won't, but I did as much research as I could before going to them and the tests they offer are cutting-edge, micro-biological science). The second round of tests revealed that my Mitochondria are severely underperforming. I had never even heard of Mitochondria before going to that clinic.
I have cut and pasted from a medical article below which explains what Mitochondria are and why they are so important and cause so many problems when they don't work well. It can also help explain why one person's CFS can be so different from anothers.
The main thing is, fellow sufferer, I'm not going to assume that you are any more a medical expert than I am, so it may be you are unaware that the cause of your CFS **MAY** be the same as mine. So if, (after doing your own research please!) you feel pursuing mitochondrial investigation may help you, then go for it.
As for me, I am currently following a diet regimin (on which I have felt better than I have for years) and am about to go for another round of tests to try to help with my specific set of symptoms. Unfortunately, there is no current cure for Mitochondrial disease (though information is changing all the time) but let's face it. Half the battle with chronic illness is being able to detail exactly what it
is.
I will update you on my progress in about two months or so and I'll try to reply to any queries that this post generates. But i read so much pain and hopelessness on this board that it was all I could do to try and offer some kind of outlet. Please stay strong, brothers and sisters. All we have is each other.
Re: Chronic fatigue could be Mitochondrial disease
Quote:
Originally Posted by curiousk
I understand that there is a dr sarah myhill in the UK, who is doing some groundbreaking work with patients, and I hope that is who you are seeing. I think we can mention drs names here.
I am new to this site, but I have had CFIDS/ME for 18 years, and I am just appalled at how the drs are still treating patients. It is truly a medical crime in my opinion, and when the truth is known about this disease, many egos will be depleted a bit, I hope.
I hope your treatment plan works really well for you, and you get on the road to recovery very very soon.
BTW, do you know of jonathan kerr, the dr over there who did the genetic studies? you can do a search under his name and find the 7 subsets of the illness, to see which one you fit the best. His work is stunning and I believe it will be definitive enough to be rewarded someday.
Best to you,
curiousk
Thanks for the link to Jonathon Kerr, I'll google him. Dr Sarah Myhill I know all about - she directs patients to the same lab that tested me.
And i couldn't agree with you more about the medical crime being perpretrated against ME/CFS/Mitochondrial dysfunction sufferers and the ego of some mainstream Doctors is incredible!!
I haven't managed to move too far with my treatment because of money (for the alternative treatment) and distant follow-up appt times for the mainstream treatment. But I have started adding vitamin B12 to my supplement regime and it does give me some fairly fast-acting, short-term relief from brainfog. Of course, with these types of illnesses, there's no guarantee that will work for anyone else unfortunately....
I post mostly on a more specific braingfog-focused site these days and I doubt I'll get back here much again. But I hope you manage to recover as well.
Re: Chronic fatigue could be Mitochondrial disease
Quote:
Originally Posted by frosty1
Hi - your story is so similar to mine except I have been ill for two years - And now I have a diagnosis of mito disease instead of chronic fatigue. When you think about the symptoms and treatments for CFS, most really are treating mito disease anyway - except there is more specific research into the exact breakdown in metabolic pathways in mito disease and treatment of these - Id love to hear how your treatment progresses and I will do the same -
Hi frosty. Glad you didn't have to wait 22 years to get diagnosed As I said before, my treatment has kinda stalled since I was last here so nowt much to report (apart from the B12 improvement) and I tend to post almost entirely on another site these days. But I really am glad you haven't had to suffer the anxiety of being un/mis diagnosed for too long, though it probably was much too long for you anyway I hope your Dr's know exactly what wrong with your mitochondria as well as there is a huge list of myopathy and specific treatments
)
Re: Chronic fatigue could be Mitochondrial disease 
. Do you have Narcolepsy by any chance with your CFS? 
There was a time i attempted some electrical DIY and almost killed myself because I forgot i switched the power on 
