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)

Dr M was private. The NHS would never pay for the tests she ordered. We saw three different consultants on the NHS but they were completely unhelpful. Our daughter was 8 months too young for the CFS clinic for teenagers; in our area she would have had to be 14, no exceptions. We went privately because we were desperate; she was getting worse and worse, and it seemed like no one could do anything.

Clara thank you. Its good to hear of people recovering and I am so pleased your daughter has done so well.
I worked in the NHS (not medical) and have a research background so it was quite hard for me to 'cut loose' from conventional evidence based theories - however the mitochondrial dysfunction theory made sense, (I felt like I needed new batteries- mine would just give out !) so eventually I got my GP to test what could be tested (vit D B12 thyroid, not much else) and did what I could (following basic mitochodrial support protocols) on my own ( well with my GPs knowledge) and I have got slowly somewhat better. I think when conventional medicine has little to offer, you have to look beyond convention. I did have some help (took a few years to get that) from the local CFS team so learning to pace better helped too. So I will try and read the Myhill book, and see what has changed.

Infection-triggered disease onset, chronic immune activation and autonomic dysregulation in CFS point to an autoimmune disease directed against neurotransmitter receptors.

simmaronresearch.com/2015/09/tea-time-at-simmaron-i-mady-hornig-on-the-peterson-subsets-immune-exhaustion-and-new-gut-findings-in-mecfs/

I have been better since taking Vit D, Zinc, Iron & Folate (I also take calcium, magnesium & Rose hip but I haven't seen a significant change with them) I also have B12 injections (of which I would like more)

But it's fascinating that guts may be involved - my brothers dagnosis of RA in Sweden started with a stool sample

Dr Myhill received a highly commended from the bma book awards for her latest book - it would be good if mainstream gp's ciuld have a read of it.

www.drmyhill.co.uk/wiki/British_Medical_Association_Book_Awards_2015

I think it makes perfect sense and have been supplementing with various supplements that I'd read up about on her website and from looking at my blood results.
Wonderful news that your daughter has seen such impressive results clara

My daughter ended up taking 2 forms of zinc, 3 types of B12, a B complex, 2 probiotics, co-enzyme Q10, L-Carnitine, evening primrose oil, flax seed oil, Polyzyme forte, Methionine, Glutathione, vitamin D, Horopito aniseed. She obviously didn't take all of them at once, and they were specific remedies for the particular problems she was experiencing. For instance, there was a particular probiotic and the horopito to deal with her intestinal imbalance. Many of the supplements were from different specific companies who created high quality products; others could be cheaper brands.

Thanks for your support; I still can't quite believe that we are ok here. I guess it takes a while to get used to not having to worry about every move she makes. She is back in school after a year out, and can even play with friends and do homework after a full day in school- a miracle.

clara one of our big issues for dd is that she has mega hypersensitivities to taste and smell and can barely eat or drink. She can usually tolerate water and some food from a limited range. She can't take tablets because throat so swollen. Recently had NG tube removed and we are trying food (about 500 calls a day) but still struggling with tablets including her basic vitamins and salt - essential for her POTS. Can't begin to imagine how I could get any other supplement into her - just enough to stop her dying is hard enough. She's lost so much weight since stopped tolerating milk feeds via NG that we may have to move to a PEG. I wish life were different

I am so sorry overthemill. My daughter also stopped eating when she was ill (she had a fever for 4 months), lost a huge amount of weight, and would only drink sometimes. I bought a juicer and started making her fresh juices, which was a breakthrough, as I could put lots of healthy things in, though she refused anything thick for a while. She didn't have any problem with pills though.

We've tried juices and smoothies but all make her vomit - they taste too much for her to cope with. It's like she's overwhelmed by the taste/ smell. Maybe once she begins to recover but I can't imagine when that might be. Today she can't use her hands as the neuropathic pain is so bad - her palms are bright red and burning and she can't touch anything without screaming. Today hoping she might manage a bagel warmed up if I break it into tiny pieces. No butter or anything, dairy and dairy substitutes make her vomit

I am so sorry. I wasn't suggesting juice would be an option to someone with taste sensitivities- I was just remembering the horror of seeing my strong daughter waste away before my eyes, unable to eat. She didn't have any of your daughter's pain and sensitivity though: just the CFS.

I wish there were something I could say to help.

clara again, am clearly off my game today! I didn't think you were - no one thing works for any individual suffering from this hell. But hypersensitivities are a symptom of CFS - as are all the other things she suffers with like POTS. Some people don't get all the symptoms - sadly she does! There isn't one she doesn't have to the nth severity.

I wish I had the brain power to understand all the articles :o but glad they've been posted, thank you

Epic pain today, ugh. Didn't even manage to do my pedaling last night after all. Home ed was done entirely on the sofa (which actually works really well - I'm really pleased with how it's working out this term)

DH is picking up my Naproxen tomorrow, I always get nervous about trying anything new. But I need decent painkillers, my steady dose of amitryptiline just isn't cutting it at the moment.

I have an appt with Occupational Health tomorrow, where they'll be asking whatever questions my manager has given them. It's over the phone (must remember to charge mine) so at least I can curl up on the sofa, but I almost wish it was face to face so they could actually see how much pain I'm in :( they were helpful last time at least, they reported that future relapses or progressions in the illness were likely. So fingers crossed.

I got my appointment through for PIP assessment today, I'm bricking it. I feel like such a fraud because I have to manage the school run/looking after the baby and some people don't see how I can be ill if I can manage that.

I wish I could scream at everyone do I look like I want my 8month old to go to the childminder for no reason other than I can cope with her? Do I look like I want my 4yo to tell her school friends she can't go to the park because mummy's poorly? Do I look like I enjoy sobbing on the sofa because I have to get up to collect her from school because there's no one else to do it?

I just copied the links & asked my brother to read them

good plan, katy! Nowt wrong with a bit of outsourcing :o

(((iccle))) it sucks doesn't it. I was doing a housing form (medical needs) yesterday and it was horrible seeing it there in black and white. And then I had to give up as my hands hurt from holding the pen

It's so hard, having an invisible illness. The constant worry that people are judging you if you dare to actually use what little energy you have. I'm feeling like I should stay indoors 24/7 for the next 3 weeks as I'm signed off, but I know that it'd be harmful for me. Yet I am still looking over my shoulder if somebody sees me out and about (and misses the look on my face that says 'ouch'!)

I would often sob before/after school runs too, and share the 'no you can't do that because I'm not well enough'. I do think the guilt we feel is much worse than the DCs' sadness at missing out though. I do feel bad when my DCs miss out on stuff but when I look at it objectively it hasn't actually done them any harm. They are lovely, kind little people. And it does get easier as they get older so hang in there. My DCs now let me sleep in, play with their lego etc, they love our quiet pyjama days.

this is almost impossible for CFS/ME/FM patients but it is fascinating (my brother found it )

Hope your appt went ok today fuzzpig?

Yes the guilt is crippling - mine are old enough to enjoy duvet days - which basically means they're left on their own with minecraft and chatting online with their friends. Mine are much happier now im not working as at least I'm able to use my energy on them rather than resting to work and recover from working.

We used to be a really active family and I miss those bike rides and walks, but have replaced them with board games so still spend time together as a family.

We love board games too :)

Appt went... I don't know really. I was as honest as I felt I could be, but I was asked 'so do you see yourself actually coming back to work...' I don't mean in a horrible/confrontational way, but it was very 'to the point' IYSWIM. I said I really want to which is the truth but... :(

We talked about 'reasonable adjustments' and all that stuff but TBH there isn't anything else they can do for me without basically taking half my job role away.

They said they'd phone back in 4 weeks which I wasn't expecting really but we will review the situation then I guess.

I really need to figure out what I'm going to do at the end of my current sick note (middle of the month) I can't actually imagine being well enough to go back then. Every time I think I'm ok I end up in even worse pain.

I've had a very rubbish few days DD1s been ill so home from school and DD2 off the child ode just in case after a couple of bad nights.

I'm still waiting on a referral to the pain clinic and it's getting ridiculous. I'm taking max doses paracetamol and Tramadol 3/4 times a day (despite my gp prescribing 1 a day ) plus naproxen. Duno what they can give me though as I'm still breastfeeding DD2 and don't really want to stop

Hi all. My ds had/has many of the symptoms that you all are describing. He was labeled a lazy child and I was somewhere in between a mollycoddling mother and/or suffering from Munchhausen's By Proxy. When ds was 11 we finally got his illness diagnosed (well, actually Google and I did the initial diagnosis, followed up by a geneticist). He has mitochondrial disease. It's a catch all description (like cancer) to describe anyone with mitochondrial dysfunction. The cause of the dysfunction can vary from patient to patient, but the symptoms often overlap. Ds suffers from (not a complete list) hypermobility, poor muscle tone, cyclical vomiting, migraine, chronic fatigue, dysautonomia and most recently bipolar.

Once I figured out what I thought ds had, I brought him to one of the 3 people in the USA treating his condition (who happened to be local to us here in Los Angeles). He did genetic testing and put my ds on what's known as the Mito-cocktail which is a cocktail of vitamins and supplements needed by the mitochondria to function. The main ingredients are high doses of L-Carnitine, CoQ10 and Riboflavin. It has made a huge difference in his health. His bouts of Chronic Fatigue and migraines now last a few days instead of a few weeks or months. He is even taking attending our local high school (although with an IEP and reduced schedule in place).

Here are two websites that have lots of information about Mitochondrial Disease: www.mitoaction.org/ and www.umdf.org/. There is a fair amount of evidence that Chronic Fatigue has mitochondrial dysfunction in origin.
Please feel free to ask questions here or PM me if you want more information.

By the way, many of the traditional medication used to treat migraine and pain are dangerous or downright toxic for people with mitochondrial dysfunction. For example, when ds first started getting migraines they gave him depakote which is a pretty standard treatment for migraines in children. We found out later that depakote can cause stroke in mitochondrial patients and should only be used as a very last resort.

I have just gone back and read some of the more recent posts...sorry should have read them first. I am glad to hear that people are talking about mitochondria and Chronic Fatigue. Also, my ds' genetic testing showed calcium channel mutations and his geneticist (Dr. Richard Boles if you want to Google him and his papers) put him on a medication for altitude sickness called Acetazolamide which has helped many of his patients with this particular mutation. It certainly helped ds.

I forgot a few other of his symptoms are POTS and tics and anxiety (all of which seemed to get much better after he started the Acetazolamide so I forgot about them).

SofiaAmes the treatment which is helping your son is similar to the treatment which cured my daughter. I described her illness and recovery earlier on the thread. Did your son have the detailed blood and stool tests? Our doctor in London really saved my daughter, and was the only doctor who had any solutions, or even any real understanding of my daughter's illness.

claraschu we didn't have blood and stool tests because I got into the diagnosis sort of backwards. Most patients with mitochondrial dysfunction spend years and zillions of tests of all their various poorly functioning systems trying to figure out what is wrong with them before mitochondrial disease is finally diagnosed.

My ds' symptoms did not get completely unmanageable until he started getting months long migraines at age 9 and then started cyclical vomiting at 11. It was the combination of these two symptoms entered into a Google search by me that turned up Dr. Boles (his geneticist). I have the added bonus of having a very famous scientist father who weirdly and coincidentally works on mitochondria among other things. The very first tests that we had done were genetic tests done for free by someone in my father's lab (at this stage we would have never gotten any doctor to order the tests or any insurance company (we are in the usa) to pay for them and probably in any other family would have spent another few years chasing a diagnosis. But once we had the results of the first test from my father's colleague, our gp agreed to do a referral to Dr. Boles and an email from my father helped us jump the 4 year waiting list. Dr. Boles immediately diagnosed Giovanni with mitochondrial disease and put him on the mito-cocktail. The results were so immediately and significantly good that it was clear that the diagnosis (and treatment) was correct. The only downside was that because ds was now relatively healthy, he had enough energy to start puberty and that was not something his mitochondria could handle along with running his brain and he developed bipolar (which I'm told is fairly common in mito patients). We did the additional and much more in depth genetic testing as part of a clinical trial a year later which added the more specific information about what exact mitochondrial dysfunction was present. At that stage they found the calcium channel mutations and added the Acetazolamide which has helped a lot.

I am so fortunate to have a science background and parents who could access the best scientists and doctors in the world to consult about my ds' symptoms and condition. I just hope that I can pass my learning on to others so they too can rescue their children (or themselves) from the despair of CF and all the other mito symptoms.

claraschu please look at the links that I posted earlier. The mitoaction website has very good information about the mito-cocktail which it sounds what you are giving to your dd. You may get more specific information to hel you fine-tune it. Also worth trying to get the genetic testing done if you can. I think there are doctors treating mitochondrial dysfunction in the uk and you should be able to get them to refer your dd for testing. It adds a lot of information that will help fine-tune the treatment.