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)

Hi Sofia you obviously are actually far far more knowledgeable than I am. From what I understood, mitochondrial dysfunction in my daughter's case was triggered by a terrible, long lasting virus. With the help of our wonderful doctor (who specialises in CFS), she has completely recovered. I was interested that the treatment she had (which was actually very specific and kept changing as she started to gain strength) was similar to your son's.

I am so glad that he is doing well now and thanks for posting the links.

claraschu the way Dr. Boles explains it is that the mitochondrial dysfunction is there from birth and is caused by genetics. In kids like your dd, the dysfunction is not enough to cause problems until something particularly taxing to the mitochondria comes along (like a bad virus) and then it kind pushes the mitochondria over the edge because they have been functioning at the threshold of their ability up until then. What's important to remember is that the mutation is still there and the potential for another episode remains. The next time your dd gets very sick (or stressed), you she should start the mito-cocktail supplements right away before she gets the fatigue etc. symptoms so that she doesn't push her mitochondria over the edge again.

Sorry, trying to do layman terms....hope that was clear.....

Really fascinated by all this information about mitchondria. I remember drawing them in Biology lessons :o and given their function it makes sense.

Can I ask you both, given that I have absolutely zero chance of going private, what supplements do you think would be worth buying over the counter?

In other news, I've had two referrals through in one day - one to the CFS/ME clinic (I have been in one before, but that was St Barts, this one is local) and one for an assessment for autism. Oddly I have heard that CFS is in some ways linked to autism?!

SofiaAmes that sounds interesting, I think the people at forums.phoenixrising.me/index.php would be interested.

There's lots about mitochondria on this website too www.drmyhill.co.uk/

Pathophysiology in ME: Orthostatic Intolerance

London conference June 2016

Our annual M.E. Question Time is at Kingston-upon-Thames tomorrow | 3 October 2015

Hi there
I'm new to mumsnet. I need help and advice please! Wasn't sure where to post but I have M.E and P.O.T.S (Postural tachycardia syndrome)
My Mum's been helping over a year now with my little boy as I have bad insomnia and can't get up at 6am for him.
My Mum's struggling now to do it as she has anxiety and I need to get some help elsewhere.
I'm worried about contacting social services as mum thinks they'll take my son away!
My main issue is the early morning. I need someone to get him up at 6ish when he wakes up. And three mornings he needs dropping off at nursery.
Any advice would be great. I'm thinking maybe hire a nanny but dunno best place to find one. I live in Worthing.
Thanks for any advice in advance!!
Liz

Hi sofia ! Nice to see you again

lizk you sound like you need more support. Ime social services are slow but ultimately helpful and worth contacting but I suggest you get advice from a local ME group who will know what is available locally

Hi Liz, welcome to MN :)
Sorry you are suffering. I also have POTS and getting up in the morning is so hard. For the last couple of weeks I've been sleeping downstairs as I find it easier to get up and ready (but I know it's not helpful in other ways). TBH though not having to get up early has been an unexpected benefit of homeschooling my DCs

I'm not sure what to suggest if there's nobody to help, but I would say don't worry about SS taking your DC away! I referred myself to SS when I was very ill and DH was about to have surgery. They just came to visit and asked how we needed help. They could see how much we were trying to care for DCs and could see they were loved. You could ask for a family support worker who would help coordinate any other organisations. You might get help from a charity called Homestart, it'd be well worth asking for a referral to them.

Childcare.co.uk might be a place to start looking for a nanny? You can get a free membership. There's a space on your profile to write your requirements, I guess you'd need somebody to let themselves in and then sit with DC or get them to nursery? If you write in detail what you need then you should get replies only from people who'd be willing to do it.

fuzzpig depending on your age you probably wouldn't have learned much about mitochondria in school. At some point as I was trying to decipher my ds' genetic testing (they tested both his mitochondrial dna and his nuclear dna that send proteins to the mitochondria), I was lamenting not paying better attention to my Biology course at University and ds' pediatrician laughed and said it wouldn't have done you any good because they didn't even know that mitochondria had dna when you were in college!
The www.mitoaction.org/ website that I posted earlier has a great page with suggested dosages of the mito-cocktail supplements.
On the supplements end my ds takes daily: L-Carnitine, CoQ, Riboflavin, Vitamin D, Magnesium, Omega3, Krill Oil, a Multi-Vitamin and for his acne (it really works!) B5. He takes most of those in much higher doses than is normally suggested because he needs them to supplement what his body isn't doing right. If you want specific dosages and can't make your way through the mitoaction site, feel free to PM me.

LizK are you taking vitamin D, or have you had your levels checked. Adequate Vitamin D levels are essential to sleep rhythms (and energy and appetite and mood regulation and.......).

Hi overthemill! I'm sorry to hear that your family is so resistant. I just recently went to a MitoAction get together and it was so heartening to see how many kids had had "miraculous" recoveries from the mito-cocktail supplementation. I really am lucky that my father is so well known in scientific and medical circles. He is absolutely adamant that the micronutrient supplementation is the way to go and dropping his name really helps me get doctors to take my ds' illness and treatment seriously. It also was much easier to get acceptance once I got the genetic testing done. The result pages are very impressive looking (lots of complicated color charts and terms). No one (not even my mother who was a geneticist) can actually make heads or tails of them, but they still "believe" them as evidence of a "real" illness in a way that they never did when I presented my limp, practically comatose ds.

Thank you :)

I only really did a bit about mitochondria being where the actual respiration happens but TBH I am crap at science! Give me some maths any day :)

(and I'm 28 :) although I feel twice that right now)

I listed most of the supplements my daughter took on Tuesday at 9:42. She had a clear deficiency of zinc and B3, and she also had an unhealthy balance in her gut, so she took a very expensive, high quality probiotic and the Hiropito-anisseed for that.

It is important to get good quality supplements. Bio-care tend to be quite good, according to our doctor. We also watched her diet very carefully, and though she ate very little she ate well, foods rich in good fats and protein, with no sugar, milk, or highly processed foods.

Our daughter had CFS but no other conditions. Her symptoms started with a horrible virus which turned into CFS with low grade fever, no appetite, UTIs, brain-fog, and overwhelming, debilitating fatigue.

Once she started taking the supplements, it took about 2 months before she started to recover.

She was taking pills 4 times a day, and about every 6 weeks her doctor added something. She is now completely well (knock on wood).

One more point to consider: by NHS standards our daughter had a normal level of vitamin D and B12 (hard to test for), but our private doctor told us that NHS standards are different from those in other countries, and often levels are considered normal which would not be acceptable elsewhere.

Thank you clara

I'm going to go through what vitamins I actually have over the weekend. I was taking separate stuff like B vitamins, zinc etc and evening primrose oil and cranberry extract but only basic Boots stuff. I kept them all in one of those pill box thingies along with my medication but got sick of taking so many things... silly in retrospect. :(

sofia and clara had the CFS doc come today to see her and I asked about blood test results - he said the tests she had would always show her as about normal because they weren't looking for anything very much - just standard stuff and to have , say, a magnesium deficiency, you'd have to be massive depleted to show it up whereas it could still be low using another test. Does that makes sense? Not sure if I'm explaining it properly. I did get her most recent 3 results ( at moment as she is malnourished she has monthly blood tests for electrolytes and FBC) and they are all pretty much normal except those that indicate malnourishment. I don't know how we'd get it her tests done - she can't leave her bed bed it's had enough getting NHS phlebotomist to come here monthly! I am curious - she just keeps getting worse and I am very much thinking that supplements migh work but I don't know how I'd get them in her as she can barely swallow anyway- just getting 500-700 calories a day is hard enough - she needs 1500 min to stop losing weight which she is doing. I think it will be PEG soon

Overthemill, I will eat my hat if your dd doesn't have mitochondrial disease. She has classic symptoms. Please get in touch with some of the doctors in the uk who specialize in Mitochondrial Disease. They really can effectively treat your dd which it sounds like her current doctors are not doing. I am sure that you can get your dd treated and out of bed and it's time to stop listening to your dh's family!
You can get genetic testing done here: www.courtagen.com/ . They offer generous assistance if you don't have insurance or money to pay for it.

My ds has normal levels of the normal things that people test for. That's a classic problem with diagnosing mitochondrial disease.

overthemill I am just so sorry for the hell you are going through.

We had blood and stool tests done by Biolab and Acumen. Here is some information about these tests written by a doctor I don't know:

www.dr-forsyth.com/Dr_Charles_Forsyth/Downloads_files/MITOCHONDRIAL%20TESTS.pdf

He lists the standard tests (which I am sure you have already had through the NHS) and then tells a little bit about the additional tests he would do for CFS sufferers.

I was desperate and not sure I trusted any of this when I took my daughter to our private doctor. She could barely walk through the door of the clinic, but now she is stronger than she has ever been.

I thought it might help to hear from someone in the UK, even though I don't have the understanding or information that Sofia has. I think a really good doctor would help you with all your questions about how to help a patient who can't come to the clinic or swallow pills.

Thank you sofia and clara . It is awful to think about how one day my daughter was playing with my sisters new puppy and the next day unable to walk, eat or speak. Looking back I think there were indications eg migraine, CVS, swine flu, mesenteric addentitis,terrible immune system but conventional GPs etc (and family) always blamed depression. But she wasn't depressed. She has had 13 psych assessments since November 2013 and each and everyone shows her to be resilient, witty but flat mooded - who would be happy being in bed 24/7?

I will pluck up my courage to discuss this with DH and doctor. They both know how desperate it is now.

forums.phoenixrising.me/index.php?threads/jenny-eclair-does-the-chilli-me-challenge.40288/

Various doctors tried to imply that maybe my daughter was depressed or had an eating disorder; nothing could have been farther from the truth.

When she was well she ate voraciously and was extremely gregarious and happy-go-lucky. When she was ill, she couldn't eat and had no energy to talk or do anything. It was very bad for her to have doctors suggest treatments that made her feel worse: counselling and graded exercise (exhausting), counting calories and weighing in at the surgery (made her worry about eating without making her able to eat more). Also there was the pressure that if she was doing what they suggested she would supposedly get better, so if she wasn't getting better it might somehow be her fault.

She kept getting worse until we did the cocktail of supplements. As I said before, after we started the supplements it took about 2 months for her to start getting better.

I do know one 14 year old boy who started getting better within 2 weeks after being ill for 3 years, but he was not as badly affected by the CFS as my daughter was. His father is the person who first told me about the research into mitochondrial dysfunction (Oxford University biologist who had done a lot of reading).

Hi again
Thanks for replying Fuzzpig and SofiaAmes :)
I asked my doc about homestart, he didn't have a clue what I was on about.
Is that the only way II can get their help? To be referred?!
I don't see my gp now til the end of the month. Argh.
Thanks for the website link :) I'll definitely check that out!
My mum thinks social services won't send ppl out at 6am to help.
And if they think I can't get up for him that they'll put him into foster care until I improve! Well its been a year and I haven't improved :(
I did have my vitamin D checked in feb, cuz I asked! It was 39. I took supplements and it shot up to 102! My doc said I can stop taking it. I wonder what my levels are now, hmm?! I decided to take some last couple days as I've got a bad throat virus that won't go!

Liz

I was referred by a Family Support Worker. If you contact them via the website they may be able to advise you on how to do it.

Actually I wonder if you could get referred via your DS' nursery? Are they aware how much you are struggling with getting him in? They should be able to do something called, well when we had it they were called a CAF (common assessment framework?) or then it was something like Care Around The Child, or Early Help, or... I don't know, they change it every sodding month it seems. But basically they will have the ability to put something proper in place where they can coordinate any organisations like SS or Homestart. They will want to help, they won't judge you, you're ill! And they won't take your little lad away either. That's not what their purpose is. I would speak to your DS' key worker (or get your mum to, maybe they would call you in the afternoon if you can't go to meet them) and see what they can set up.