Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

In other news I'm fretting because I got another letter from the CFS clinic... they are asking the Dr for more blood tests, and the notes from THIRTEEN YEARS AGO from when I was an inpatient in a psychiatric hospital (self harm due to abuse). FFS. I'm really really hoping they are just trying to get the full picture of my rather complicated history, but a huge small part of me is panicking that they are going to try telling me that it's all in my head. I know I'm being paranoid, I have a diagnosis from a leading professor, but... :(

LizK that's a little silly for your doctor to tell you to stop taking the vitamin d without actually determining if your situation has changed such that you would now be getting it elsewhere. Or perhaps you made a sudden move to a sunny country and started nude sunbathing? If you haven't made those types of changes in your life, then you should keep taking the vitamin d until you do.
fuzzpig I'm sorry that you are having such stress. For me that was the worst part about having a sick child before we got a diagnosis: the implication that it was all in my head (or his). I would love to go back to each and every doctor/parent/teacher that said this to me and wave ds' genetic testing in their face. I think the most absurd suggestion made to me over the years was that if I just signed my ds up for AYSO (American Youth Soccer League) all his problems would go away.

Mood disorder issues are very common with mitochondrial dysfunction. Partly because it's f*ing depressing to feel like crap all the time and partly because as ds' geneticist tells me frequently "neurons need a lot of energy." PTSD is very common in mito patients because the lack of energy affects the autonomic system (look up dysautonomia...it's fascinating) and mito patients do have a good "reset" button after traumatic events. So what is not traumatic for a healthy person can mimic much greater trauma in a mito patient. For example, in layman terms: you are walking down the street and your friend jumps out of the bushes and says "Boo!" Your autonomic system kicks in and your heart rate goes up, your vision switches from close up to peripheral, etc. etc. Then you realize it's your friend and not a tiger and in a healthy person, the autonomic system almost immediately resets the body back to normal breathing, vision, heart rate etc. However in a mito patient, you've used up all your energy turning on the fight or flight reflex and there is nothing left to turn it off. So you have to either mechanically turn it off (mindfulness exercises, DBT, yoga, etc. work well for this) or wait until you've stored up enough excess energy for your body to do it automatically. Depending on the severity of your mitochondrial dysfunction, this can take hours, days, weeks or months. The resulting effect on your body and mental health is essentially what happens in PTSD, so they are finding that effective PTSD treatments are also effective for mito patients.

*whoops...mito patients DO NOT have a good "reset" button....

LizK34 you can refer yourself to Homestart; just call them up. I am a Homestart volunteer and am currently supporting a woman who self referred because of her fibromyalgia.

Just wanted to add that you can get patch or spray supplements - I use them for b12 - might be useful for your daughter as they're absorbed through the skin rather than needing to swallow.
Don't forget about epsom salts to help with magnesium - if your daugher can't manage a bath then using them in a foot bath would also help.

fuzzpig I take ubiquinol 50mg (purer form of coq10), d ribose 1200mg, alpha lipoic acid 300mg, l carnitine, b12 patches 5000 mcg, zinc and something else but I've forgotten

Think its vit d

Thanks very much for the recommendations.

It's really interesting about the PTSD. Needless to say the abuse I suffered has left its mark (although I've had lots of CBT etc) and when I saw the specialist he told me that the ongoing stress of suffering abuse is a contributing factor to the fact I was vulnerable to getting CFS.

I love Epsom salts, I have them in the bath along with lavender oil etc. When I have the energy to have a bath, that is.

Here's the home start website link. You can self refer. hey thanks for the spray idea. We will struggle with everything because she has extreme hypersensitivities to touch (and noise light taste smell) so I can't even use a spray emollient in her sore eczema. She gets new pressure sores from the dressings in place to protect her pressure sores! It's a total nightmare, even me cleaning her teeth is agony. She reaches when she swallows, even her asthma inhaler makes her retch of vomit. I will tell you though that I broached subject of mitochondria tests with DH last night and he wasn't opposed. I had a glass of wine ( my first since March) and I told him that I want to spend my small inheritance from my dad (who died in January) when it finally comes on the tests and treatment. He says he wants to read more and discuss it with her CFS specialist first but he's not against it.

By the way, I can't see the username but can you stop listening to your mum and ask social services themselves?! The general public have an interesting view of what social workers do. In fact they try hard to keep families together so please stop worrying about that and seek help!

Over I'm so sorry about your dad. I'm sure he'd be very pleased that you will be able to get the tests and help his granddaughter with the money he left

Thanks fuzzpig it was an awful time and I think my having to spend 15 hours out of the house and leaving her with 3 care workers and a nurse just for the funeral day ( I hadn't been able to see him in the 19 months she had then been ill) made her much worse. By the time I came home she couldn't speak at all nor eat . She stopped being able to sit up- amazing how the energy got used with strangers - sofias explanation of PTSD resonated with me. My dad adored her along with all his grandchildren and he was so sad she was so ill. It really was the worst of times

Overthemill, so glad to hear that your dh is ok with trying genetic tests!!! The company we used, www.Courtagen.com offers help with the cost of the tests and I ended up paying nothing for them. All you need is a doctor to order the test.

I will have my fingers crossed for your dd. I really do think you will have good results. Dr. boles has patients that have been in the state that your dd is in and after starting the mito-cocktail, they got so much better that they were able to go off to college!
HeyMacWey my scientist father swears by Ubiquinol, but Dr. Boles, my ds' geneticist and the expert on mito, says that he finds that Ubiquinone works better in mito patients. Ds takes 500mg a day. Also you might want to add Omega 3 and Krill Oil to your cocktail. There is a lot of new science coming out about their importance.

Hello, I hope I'm okay to pop in here. I haven't had a diagnoses of any of the thread titles illnesses.
I have hypothyroidism. Take thyroxine, but I have never fully recovered, and now, two years later, all my original symptoms have returned and I can't do anything without being exhausted. My hair is falling out, my hands and feet are numb, I haven't had a period in a year, and my immune system is low. Along with at least 25 other symptoms.
My dr isn't interested as my blood results come back perfectly. I have had CFS and fibromyalgia mentioned but nothing else.
My DH is coming with me to see Head Of practice at end Oct.
I don't know if any of you are knowledgable in thyroids. If not thanks for reading. I have read it may be to to with T3, but the NHS doesn't seem to believe in that.

So happy to find this! Have had a terrible weekend and came over to General Health in the hopes of finding a fatigue support thread, and here you are!

And glad your namechange didn't work fuzz, as I remember you from previous threads. Don't know if you remember me, as most of our interaction was from a previous name, but I have seen you in this name. Sorry to hear things aren't going well right now :(

Anyway, I haven't been properly diagnosed with anything, but I am under the care of the local ME nurse and he said he'd write up a diagnosis of CFS if I needed for work. I also have known I've had an 'unspecified dysautonomia' for about 10 years now, and only last year did I find out that the Dr who diagnosed this and gave me meds which have enabled me to live an almost normal life over the last decade suspected POTS. I've spoken about this with GP and we're very slowly working through tests and stuff (with a distraction, more below), after having been blown off by the fatigue clinic he referred me to 3 years ago (they said I had Depression, and that there 'was nothing physically wrong with me', never mind that I have to take medicine for the rest of my life just to simply operate...).

Although the new weird thing going on with me is that I am having a terrible time eating. I can't eat in evening at all, or I feel desperately ill, and it's been moving slowly earlier and earlier into the day. When it started I could have a normal breakfast and lunch, but now I can only eat a half-sized lunch and a normal but small breakfast. I've had some blood tests and an endoscopy, and they've found nothing wrong. The interesting thing, though, is seeing how HCP's actually pay attention when you start rapidly losing weight! When I first saw the GP I had lost 10 pounds in a month. It's now over 30 in 3 months. It's a different experience than having to argue about how my fatigue is a real thing! I must say things don't move much faster, but it is a nice feeling to actually be taken seriously.

Anyway, this weekend has been a nightmare as I've basically worn myself down over the last several weeks and yesterday I had several boughts of just bursting into tears because I was so exhausted and falling down and stuff. I'm fighting off a cold that DH has. I'm taking the day off work tomorrow (mostly, will do a bit from home), in hopes of getting better and not getting sick, as I have mandatory stuff and busy days Tue-Fri.

sofia thanks. I will see what the CFS doc says and work out how to get bloods from her - a real nightmare at the best of times.

murmur those symptoms sound like CFS to me and the issue with eating is typical for some severely affected people. Before she stopped being able to eat my dd had 10 mini meals spread over the whole waking day eg half portion porridge, tablespoon mashed potato, plain chicken etc and little snacks of a few nuts for example. But now she can't really eat anything. Go to the ME association website for nutrition advice. You don't sound like you are in UK though?

overthemill the genetic testing is just done with saliva, no blood!!!

murmur your symptoms sound like mitochondrial disease/dysfunction which CFS is just one symptom of.

stellar thyroid issues are a common symptom of mitochondrial disease.

The problem is that in all your cases the doctors are treating the symptom instead of the cause. The mito-cocktail treats the cause which is the mitochondrial dysfunction and tries to fill in the bits that the mutations are causing to not work properly. (For example, in my ds' case, he has 2 mutations in his calcium channels. We don't know exactly how that affects the function of the mitochondria, but we do know that everyone with this mutation has similar problems and positive effects from the mito-cocktail + Acetazolamide). You may all have different mutations that are impairing your mitochondria from working properly, but the big picture result is the same for everyone: there is not enough energy (ATP) being produced to run everything in your body at full capacity at the same time. Depending on your individual makeup and calls for energy, you will have different symptoms at different times, but there is a lot of similarity to the symptoms. Most mito patients will at some point suffer from: migraines, CFS, cyclical (or just frequent) vomiting, gut/digestion issues, POTS, thyroid, poor muscle tone (and poor ligament formation which gives hypermobility) to name a few.
The mito-cocktail (and many of the mitochondrial dysfunction treatments) are nowhere near an exact science yet, but luckily most of the components of the mito-cocktail can be taken in large amounts with no adverse side effects so you can experiment. We could see the positive effect on my ds' health within weeks after starting the mito-cocktail.

Take the time to go through the websites that I posted: www.mitoaction.org and www.umdf.org . I know it's a lot to take in and may sound a little too "alternative" for some of you. However, my father is a world renowned scientist who works on mitochondria and is doing much of the science to back all of this up. (Just a weird coincidence that he has a grandson with mitochondrial disease.)

So the eating thing could be associated with CFS? I've been assuming it's something completely different. It started with jetlag from a trip to the States, and I just didn't feel like eating at all. I forced myself to, but could only manage in the morning. That lasted for about 2 weeks, after which I was interested in eating, but again only the morning/early afternoon, which window has been slowly shrinking. As it's gone on, I've gotten worried about my nutrition intake, and also that I could be doing harm by losing weight so fast. Weight loss itself isn't a problem yet, as I'm seriously overweight (was obese, but not anymore!). I'd be relieved to find it had to do with CFS, as I've been paranoid about things like ovarian and bowel cancer.

But I don't think I'm a severely affected case - I still hold down (barely) a full time job, and am capable of a lot more physical activity than many CFS cases, it seems - I walk 15 minutes to/from the bus 5 days a week, and twice weekly an hour total to get DD from nursery. One really weird feature of it, is that I actually seem to have more energy than before I started the eating/weight issue. And there was a period of a few weeks when I didn't lose weight, and I had much less energy. And if I do eat something in the afternoon, in addition to feeling ill, it also feels like my body shuts down and I have absolutely crushing fatigue. It's as if my body suddenly stops burning fat and decides it will only take energy from what I eat - this is how my life felt overall before the eating thing started, as I constantly needed to snack to keep going.

I am in the UK - although the POTS Dr and the meds perscribed are from the US (now taking off-licence in the UK, after an attempt to take a replacement that didn't work). I think this is part of what confuses the HCPs here, as they are unfamiliar with the medication.

Very interesting to hear the mito dysfunction can be treatable. One thing my GP asked me was why I wanted to pursue what was wrong with me, and used an example of a friend who spent years to find out he had mitochondrial dysfunction, and that was that because nothing could be done to treat it. I will take a look at the links on this thread. Not sure I can get any genetic testing done, as I'm currently a bit freaked about finances (wouldn't one expect my mother to have this too? or do you need specific environmental factors to trigger it? Although my mother's life has been particularly hard, so one would expect her to have passed one of those! unless her schizophrenia could be another symptom?).

murmur that is so sad that your gp is that behind in the medical literature. Dr. Boles has been successfully treating mitopatients and writing published papers about it for at least 10 years. If you pm me, I will send you some of his papers if they aren't on the sites I posted.
Yes, schizophrenia and bipolar (my ds has the latter) are not uncommon in mito patients and there is some literature that says that mitochondrial dysfunction underlies all schizophrenia and bipolar. www.courtagen.com the genetic testing company offers help with the tests related to your income. I paid nothing for my ds' testing.
Just going back to your mom....your mitochondrial dna come from your mother, BUT they are now realizing that there are nuclear dna (the regular ones that come from both parents) that make proteins that affect the function of the mitochondria. The current thought is that mitochondrial dysfunction is often caused by mutations in the nuclear dna that affect the mitochondria combined with a "permissive" mutation in the mitochondrial dna. Mitochondrial patients often have a family history on the mother's side of migraine and some other stuff that I can't remember right now.
Also, have you had your vitamin d checked. Vitamin d deficiency can have a significant impact on obesity/appetite.

I know I am repeating myself here, but just wanted to mention that CFS also seriously affected my daughter's eating. She just could not eat at all when she was at her worst. The doctors kept thinking she might have an eating disorder or be anxious, but they couldn't have been more wrong.

Thank you Sofia. I will check all that out.

murmur yes eating issues are definitely a symptom of CFs - so yours may be as well - though of course they could be a symptom of something else. I live in fear of my dd having, say, a ruptured appendix because to her and me her agonising tummy pain is completely normal! and yes to me you sound severe on the functional scale.

sofia thanks - i had checked that out afterwards. i will see what we can sort out. i am keen to press on had a terrible few days and i am at the end of my tether again just thinking about the two years she has basically been in bed dozing her life away. i cannot imagine how she will feel when she does recover though tbh i think i have stopped believing that she will

He's miles better than the last GP, who just told me "some people are more tired than others" after I went to her complaining I was in tears as I so much wanted to garden but was too tired to, and the standard tests came back normal. I spend the next 5 years believing I was just massively lazy and somehow less capable than most people. At least this fellow is willing to investigate things!

Hmm. I still think I'm pretty functional, but I compare myself to my DH, who has had CFS for a good two decades now. His example was partly why I believed the GP who said I was fine, as I am able to do so much more than him.

I'm wondering if anyone else is in a relationship with someone having CFS or another chronic illness? It seems to really complicate things when neither of us are healthy enough to do things.

Interesting that so many on this thread are self-employed, as that is what DH has decided to do. He can work when he is able, and crash when he is tired. Although the business he has picked is a slow one, so it will be a few years before we see any returns from it! Thus, me continuing to hold my standard job is very important. Good thing there, though, is that my line manager's son had CFS and was unable to get up for 2 years, so he is very sympathetic. He has been the only person I've spoken to who has actually heard of POTS, as his son was tested for it. I'm now working 'flex time' where I do a full week's work in 4.5 days (can't afford to actually do 90% time, and in my field it wouldn't be 10% less work anyway, as I heard from many mat leave returners, including one woman who did 10 years at a nominal 80% before realising she was working full time anyway and switching to a full time contract without changing her work habits; wasn't able to get 10 years of 20% back pay, though!). My problems this weekend were created by 3 weeks worth of not actually getting my one half-day. I've learned my lesson that it's very important, but it is still difficult to manage to handle when something happens on that day, as it's difficult to arrange my schedule to take another half-day in-lieu (although I'm meant to be able to).

functionality scale my dd is 0%

Hi murmur I do recognise your name! Sorry things have increased in severity for you as well, but also glad they are finally listening and doing tests. I'm waiting for a tilt test which I'd guess you will have as well for POTS. I had a treadmill ECG which was horrendous! And embarrassing as I managed barely anything of it.

I'm not feeling so bad today, have actually managed a reasonable amount both with housework (still far less than what needs to be done, but still very good by my usual standards) and home ed is going well today despite DS being a bit of a pain. Thankfully on Mondays DH finishes early too. It's his job which really affects me - IKWYM murmur about one half day throwing everything else out, even though in my case it's not my work but DH's (because of the extra childcare etc that I have to do) - last week he had to work all of Monday instead of half, and on his usual day off he had an interview in the morning as well and it did take its toll on me. Thankfully in my job you can't really do extra (an advantage of being a lowly assistant!) and I've been steady at 12hrs, but it's just that now even that is too much. Management aren't going to put up with the absence much longer, I think, and I really can't blame them. Thing is, I DO want to go back. But it's like... ok, so I will get better from this relapse (someday - it seems to be lasting an awfully long time) but then what? It's only a matter of time until the next one. :(

I'm feeling really positive about tutoring though - I'm not going to pursue any more pupils for the moment but if I do end up losing my job I am fairly confident I could find a few more, and the hourly rate is 2.5x what I earn for the council. And it's so easy on me physically (unlike my day job which has a lot of manual tasks involved that cause me pain even when I'm not in relapse), yet flexible for the few times I really am too unwell to teach (only seems to be if I get a virus on top of the usual, which has only happened once so far - my immune system is shit but since the DCs left school they aren't bringing home so many bugs!). I do really enjoy it as well - I took years to get the guts up to advertise despite my Mum encouraging me, but once I'd given my first lesson I realised what I'd been missing. I beam with pride when I see my pupils' progress. I will still miss my day job though if I have to leave. Really really miss it, especially the customer service element. But at least the tutoring will be rewarding and fun. I'd really like to try and make a bit of money out of writing or data processing or something but I'm not actually sure how to go about it! I'm currently typing up/editing a book for my mum's friend, which is lovely but obviously a one off.

I feel for all of you. My ds is still a child so he has me to fill in all the gaps, but it's a full time job for me. I had to abandon my career (architect) 4 years ago and spend most of my day caring in way or another for my ds. I can't imagine what it would be like if it was myself with the issue and no one to do for me everything that I do for ds. (At the moment he is in bed, too tired to go to school because he spent the weekend catching up on two of his classes that he got behind in because he was sick 2 weeks ago.) I have to keep reminding myself that he is not a normal teenager who I can just kick up the butt and insist that he goes to school.