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)

Have pm'd you.

Thanks moose
Can't access my pms atm as Im on my phone but will answer later x

I was diagnosed with cfs over a year ago then told to rest and that was it.

I'm pretty much housebound except for once a week when DH is off work and I manage 2-3 hours out of the house with him. I was learning to drive but had to stop lessons because of the pain a and brain blanks amd obviously I can't walk anywhere so I'm stuck. I spend most of my time in bed. Although I can shower every day now which is an improvement on a few months ago,

The most distressing symptom is when my brain goes wobbly. I can't remember the words for things, I slur, stagger into doors, drop things, forget what I'm doing. Once I forgot where we were whilst being driven through the town we've lived in for 10 years. I sort of recognised it and felt OK about it but had no idea where I was or why. I have to write everything down on notes to stick around the house. Most of the time my memory and language is fine and I'm as fluent and as quick thinking as I always was. But when it goes it's frightening.

I get aching muscles after use. By use I mean showering, cleaning teeth, the basics. I am tired all the time but find it hard to get a deep solid sleep.

I get lightheaded and my heart races a lot. I've had an ectopic heartbeat a couple of times. It feels like my heart is struggling.

I look like death warmed up some days. Grey with two black eyes. But I'm good at make up so it gets disguised. I think I downplay it generally because my poor DH is having to do everything atm. We don't have DC and I'be stopped working so I feel utterly useless. The GP doesn't seem concerned at all. They've done all the usual tests. All fine although I got copies. I have a history of anxiety so I think they think it's that but I promise you it isn't. Just before I became ill I was feeling the best in myself that I had for years. Really positive and happy. I was preparing to apply to do my pgce and had started things like yoga, running and meditation. I felt really good!

Some days I feel positive that I'll get better but I today I needed to get it off my chest as I am quite scared that this is my life now. Today I don't feel very strong.

I feel a bit better for the brain dump there. Sorry for going on. In the interests of being positive, I've found some things to be a big help.

Vitamin D, Co Q10 and magnesium all seem to help. Especially the vit d. My skin looks better for taking it too. A teaspoon of d-ribose powder really boosts my energy and has meant I've been able to double the amount I can do. It really helps clear brain fog.

Wagglebees

Please don't apologise, sometimes we all need to just let it all out.

I totally understand your fear of this being your life from now on, but don't give up hope that it can get better. The course of my illness has waxed and waned over the years - I've even had periods where I was really well and able to get extremely fit and I try to focus on those and look forwards to the next one, hopefully coming sooner rather than later.

My worst episode was when I was bedridden for months in the early 90's and since then I've had good and bad periods, even some shorter periods of being bedridden, but never been as bad as I was then (couldn't even eat or get to the bathroom on my own).

Do what you need to get better, look up the spoons theory and use it and find things you can do that you enjoy, but don't wear you out (eg I've recently started doing colouring books, although can't concentrate/focus well enough to do them on my bad days).

I honestly believe CFS/ME/Fibro/AD/POTs are all connected somehow (personally I'm starting to think it's all autonomic in origin, but manifests in different ways in different people) and there are researchers out there right now trying to fathom it all out and come up with causes/triggers/answers and hopefully treatments/cures. There's always hope.

I don't tend to be on these threads much anymore, but do keep posting, as there are lots of other people here going through similar things and it really does help to not feel alone with it all.

Moose Thank you Your kindness has made me well up a bit. It's such a lonely thing to experience. Knowing there's unfortunately lots of others out there who are experiencing, or have experienced, similar is comforting. If that makes sense. Although I wouldn't wish it on anyone obviously.

I do think I'm better than I was when I first got bad. It's a tiny improvement but maybe slowly I'm getting there.

In hindsight, I've had whatever it is for years and years but it was never bad enough to really impact and I just thought I got run down more often than others or it was the IVF we were doing. It's only now looking back I can see it was a much milder version of this. But if I had it for years so mild that I hardly noticed then hopefully I'll go back to that again.

I did start colouring actually and got a new book at Christmas. I'll make that one of my goals to tomorrow as it's quite therapeutic. I find it turns off the worrying.

Thank you again and I'm very grateful for MN and there being some place I can chat about normal stuff as well as off load. I hope everyone has a good weekend.

No need to thank me. As I said, there are far more of us than you might think, unfortunately, we are all stuck at home so all end up feeling utterly alone. That's where threads like this one come in.

It's amazing how many of us realise retrospectively that we have been ill for much, much longer than we realised. Most of us struggled, like dragging ourselves through mud for years, constantly berating ourselves for not being able to keep up with everyone else, before finally having a major crash.

Glad you enjoy colouring. I've built up quite a collection of books and pens now. I have some for 'best' that I only do on my good days and others that I'm not so precious about, if my colouring is a bit off and use those for the not-so-good days.

Oh that's a good idea. I haven't been doing it lately as I didn't want to mess up in my Johanna Basford books.

Thank goodness for the Internet. It must have been a nightmare when there was no way of communicating with others in the same position or even knowing about them. It also means we can arm ourselves with info and try to help ourselves when the professionals fail to. I know it just drive gp's etc up the wall but when it comes to these type of illnesses, what choice do we have?

Wagglebees If your anxiety increases the more time you spend standing up, then consider this. [[http://www.prohealth.com/library/showarticle.cfm?libid=16085 While standing, Maggie began to fall apart because her brain was deprived of blood. Maggie’s compensatory mechanisms were impaired. All but one, that is: adrenaline production. Adrenaline has one drawback: It causes anxiety.

I believe now that Maggie’s panic was simply due to elevation of her adrenaline levels in an attempt to compensate for impaired blood flow to the brain.]]

What had driven the “The World’s Most Celebrated Virus Hunter” to take on our disease? I asked his assistants. They told me that Ian Lipkin wants to do two things more than anything else before he retires: he wants to solve ME/CFS, and he wants to solve autism.

Kate I don't seem to have anxiety anymore but that is very interesting and makes a lot of sense. I have wondered about the adrenaline connection as when I had anxiety very bad, I would wake in the morning with the physical symptoms such as heart racing, nausea etc, before my conduits brain had time to form a thought. So I wasn't thinking anxiously but the physical side was in full swing already. I did bring this up a couple of times to my GP and ask if it could be a hormone or adrenal gland issue but they dismissed it. I'd had 5 rounds of IVF by that point so I thought it was valid.

I'm very glad to be free of the anxiety now anyway.

Thank you for the link btw. Really interesting and does back up a few thoughts I had.

It was by Dr David Bell, here are some more recent ones he wrote

www.investinme.org/IIME-Newslet-1510-01.htm

www.investinme.org/IIME-Newslet-1510-02.htm

I've read the first link properly now and it's uncanny. My brain is slow today and I can't express myself properly but I learnt to get rid of anxious feeling by lying down to either meditate or read. I thought it was the reading/meditation but maybe the lying down was important. It makes so much sense. I just wish I knew what to do with the info. You can buy salt tablets otc so that's a start. I have starting eating salty snacks when crashing as they make me feel much better so will get the tablets.

Have to admit I had a cry at the end when I saw it was written 15 years ago but glad to see he's still researching and writing. I'll read those now.

^ my comments about the anxiety I felt don't say what I meant to. Wish they had an edit button on here if only for those of us with crappy brain fog. Ignore my first post after the article link anyway.

Thank you for posting those links Kate

All really interesting.

Hi everyone. I took an internet holiday as well as time off work. Sorry, my memory is so poor and I've only just caught up on the thread, but I believe there are some new people. So welcome and commiserations that you have to be here :)

Interesting POTS info, whoever provided that (sorry, too tired to go back and look). Pretty sure I have that, although it has not been formally diagnosed. I have continued to lose weight, but not at the rate as before. So only a few pounds down over the holidays, instead of the 10 lbs it would have been before.

I started taking the pills the gastro gave me, but stopped as they gave me major constipation. I will try again in a few days just make sure it wasn't coincidence. However, in exploring the drug, I have made an interesting discovery....

Some 15 years ago, I was given a drug for similar issues, but I believe it was not the same. The drug I have now is mebeverine, which is specific in action to smooth muscle in the gut, but reading up, I think before I was given an antimuscarinic. I only took it for a week as it was terrible for me. It gave me heat stroke, leading to a life-long susceptibility to heat exhaustion, which has thankfully never again progressed to full heat stroke, but I have lost vision and required being iced down. After reading about antimuscarinic's effects, I am now also reminded that it did something else - caused my heart to race. I remember phoning up about that, as it was of the 'call the doctor immediately if' side-effects. Although they initially disbelieved my report of racing heart, that plus the heat stroke eventually lead them to take me off it. What's interesting is that time period is also the same time period that what I now recognise are my POTS-like symptoms began. Antimuscarinics are meant to have generalised effects, including on the autonomic nervous system. I'm wondering if it is possible that this drug - which I know has caused a life-long effect in my susceptibility to heat exhaustion - triggered POTS. And if so, what can I do with this information?

Just want to say hi Murm as I'm new around these parts.

I hope you had a good break. An Internet break sounds like an excellent idea. I do sometimes think I might have more spare brain power if I put my phone and iPad down for the day/night. But then the boredom of being stuck inside wins. I really must try it over the weekend.

murmuration - "antimuscarinic" there was something recently

Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

Mumur, that's interesting about antimuscarinics- and Moose. I had a very bad reaction to Kwells - a travel sickness pill (antimuscarinics) back in my late teens, but I think I already had symptoms of POTs by that age. I wonder if some of us are wired up differently - to be over sensitive? I guess it could also be that if AD is the underlying problem - a little bit of a neurochemical that is perhaps in very short supply could have a greater effect than in someone with normal levels.

maggiso it wasn't me that had the bad reaction to antimuscarinics, but now you come to mention it, my parents used dish out Kwells for the ferry crossing every summer and I would always go dizzy and throw up afterward. I hadn't even remembered that until I read your post.

I now take Stugeron (Cinnarizine), which is essentially an anti-histamine, purely because that's the only thing the pharmacist in Ireland would give us for dd when she was under 5 and we went to by travel sickness pills. Because we had dd with us she refused to sell us any normal travel sickness pills, so we all took Stugeron and having discovered it's much better at the job, we've stuck with it ever since. I used to spend every ferry trip lying down with my pillow and blanket, now I walk around, go to the shop, do some colouring - even eat. It's been a real revelation.

Having just done a bit of quick research it actually makes a lot of sense that I actually feel quite well having take them, whereas they make other people drowsy.

First of all, considering I have regular flushing episodes as an AD symptom, I'm now wondering if it has anything to do with a degree of possible mast-cell involvement, which the Cinnarizine/anti-histamine might potentially be dampening. Certainly food for thought.

The other active ingredient in Stugeron is Dimenhydrinate (DRAMAMINE) and I just found the following information on that drug.

Dimenhydrinate blocks certain actions of histamine, as well as certain actions of acetylcholine, in the body.

So again, the anti-histamine effect, but what really caught my eye was:

Acetylcholine has functions both in the peripheral nervous system (PNS) and in the central nervous system (CNS) as a neuromodulator. In the peripheral nervous system, acetylcholine activates muscles, and is a major neurotransmitter in the autonomic nervous system.

Even more interestingly:

Direct Vascular Effects of Acetycholine
Acetylcholine in the serum exerts a direct effect on vascular tone by binding to Muscarinic receptors present on vascular endothelium. These cells respond by increasing production of Nitrous Oxide, which signals the surrounding smooth muscle to relax, leading to vasodilation.

Soooo, is it possible that by blocking Acetylcholine the Dimenhydrinate in Stugeron is both having a calming effect on my ANS and reducing vasodilation - hence me feeling better than usual?

I am very foggy on it really, but also, does that last quote imply that reducing/blocking Acetylcholine would also have the effect of freeing Muscarinic receptors - so in effect, the opposite of what anti-muscarinics do? Or am I so brain fogged I've got that completely wrong?

I am probably waaay off the mark, not least of all because I am not in a good way at all this week and my brain is refusing to work with me. But this is what I love about these threads, sharing experience can really help us all to connect the dots, where previously nothing seemed to make sense or perhaps things seemed completely unconnected.

Sorry, should have proofed my post. End of first paragraph should read:

I would always go dizzy start to feel really terrible and breathless and often throw up afterward.

Hi everyone!

Hope you don't mind if I join in.

I have had cfs for the last 7 years after coming down with glandular fever aged 16.
I went the unconventional route and followed dr myhill, saw naturopaths, and went to a cfs clinic in London. I'm quite high functioning and I doubt even my friends would notice I'm ill without me saying. I'm still constantly tired and have gut issues and terrible immune system. I'm looking to get into work but it's so hard when you're years behind everyone else your age and lack experience!

Hope everyone is having a good day!

Hi maiscout

I've seen several mentions of CFS clinic. Is there a benefit to attending one of these? Is it the only real way to get a definitive diagnosis of CFS/ME? Is there a reason to have a definitive diagnosis? Is there any treatment available through this?

Alice I can give you my perspective on CFS clinics if you like. For me I think it was a little bit helpful to attend a CFS clinic. My local one has no treatment as such but it was helpful in first believing me and recognising I was very unwell, (its so good to talk to someone that listens and hears!!) but also helped me learn to pace better. I had a couple of sessions with an OT who picked up I was doing far too much (I kept going till I keeled over literally), so set me up with diaries to help regulate and get me functioning higher. I good CFS clinic should rule out other well known causes of your symptoms. I had to ask to see a cardiologist who ruled out conventional heart disease but advised on POTS after I asked.
Moosemama, I think antimuscarinics are also called anticholenergics or something similar, but the pharmacology of the ANS is way beyond me at present ( it always was anyway!). I also use Stugeron happily now (although I feel too sleepy to run after DS) and avoid drugs like Kwells like the plague.
Welcome Maiscout. I have followed much Of Dr Myhills published advice too.