Could I have [mild] ME?

[Christmastreedelivery]

Hello.

have had a bit of a light bulb moment this week. I am starting to wonder if I might have ME, in a mild form?

I have noticed that I seem to go through cycles of being ok. When I am in a cycle of not being ok, I have the things in my list going on.

Aches. Mainly joints, it hurts to walk up and downstairs. My wrists ache, and I get shooting pains through my long bones. My back aches in a tired muscle sort of way. My pelvis and hips ache like I have been running, even when I am just sitting.

Tired: No matter how I catch up on sleep, or get a normal amount of sleep for me, I feel dog tired. Like jet lag, I feel myself nodding at traffic lights.

Words: I get them mxed up, and use the wrong ones. I start a sentence fine and then it runs away from me and I can't finish it without really concentrating and stumbling through.

Skin: Sore. That's the only way I can describe it, especially over my cheeks and arms.

Sweating: I have days [the bad days] where no matter what I do, I just pour sweat. Only my armpits, but still. Could do without it!

Palpitations: yes. These are there on the down days, at rest. I've had a 24hr tape, it was fine. Naturally I didn't have any during that 24 hrs!!

Treacle: Feels like I am wading through treacle. Not surprisingly on these down days I am grumpy and horrid mummy

The thing is the cycle. That's what got me thinking. Yesterday I was great, baked, did crafts, did some plannning for work, tackled some jobs that needed doing [phoning for appointments and stuff like that]. I thought to myself last night, 'OOO you'll pay for this good day tomorrow' and that rang an alarm bell. I shouldn't be thinking like that should I?

I went to town for a 6 hour shopping trip, and seriously I had to go to bed for 2 days afterwards.

What do you think?

BTW, I am very unlikely to be anaemic, and I have had thyroid checked in the past.

Have Dr's appointment tomorrow. Will he think I'm a moaning bored mum who whould loose weight and get out more? I'm scared of getting the face!

I'm seeing the GP tomorrow...(if I don't cancel )

I hope your Gp appointment is helpful tomorrow Solo.
Know what you mean about the viscious circle I try to do as much as others or catch up on chores but end up iller and doing less! I so hate being thought as useless slow or lazy!

'Tis crapola magso! :(

Magso, I think you are brave and determined. We are seriously limited in what we can do, and I'm sure you do as much as you can. Don't beat yourself up for what you can't help or change! We need proper research into what works for who with this illness. I'm sure we are all wishing we knew of a magic bullet to make us well. Hang on in there, and take care of you xx

Tramadol. He's given me Tramadol.

Oh I hope the Tramadol helps Solo! I'm sorry your work are so unsympathetic. (Quick hug) I got to see my GP ( to review my perfectly normal blood tests - infact my RBC is higher than it should be! She confirmed CFS but was not averse to me seeing someone if I could find a CFS specialist. So I feel I have made progress. Had a wobbly day at work (I only work one day a week) - struggling to talk etc so very tired now. I kept loosing my thread and nearly forgetting important things and felt so foolish. I even wondered about very early retirement!!

Thanks Clouty. I have been looking at DrMahills website and have to say a lot makes sense to me -a skinny asthmatic with gord-- now with CFS. So I am wondering about making up a magnesuim moisturising cream as per her recipe to try and up my mineral levels. ( Because people with dodgy digestion due to gord are poor at absorbing minerals through the stomach)I have epsom salts and coconut oil in stock. I'll report back!! Has any one tried the stone age diet? Wondering if it is worth a go.

Stone age diet?! what's that then?

Have you been tested for diabetes ? I ask because my DH had these symptoms esp the mixing up of words.He gets that now if blood sugars are high also the achey and stiff joints and immense tiredness.You dont mention having to go to the loo more during the night tho as this is a symptom too.Also if he has a busy day he is floored for a couple of days after.HTH and doesnt confuse you more lol !

Hi mammabear.

Not diabetes in my case. CFS/ME fatigue usually doesn't last for a couple of days post exertion, it lasts weeks and sometimes months on end.
I go to the loo more, but I think that is age related :)

Solo The stoneage diet is eating non processed fresh foods - the sort of foods that would have been available to our ancestors - ie fruit, veg, nuts seeds, fish meat ( no grain or dairy) etc. I saw it mentioned on several websites.
Mamma I think poor glucose control or whatever it is called is part of ME/CFS.

Hello ladies

Well, I have just survived a weekend at ...... Legoland!

I don't know how I did it. Well I do actually. Dh did all the rides, bar a gentle boat and train ride with dd and I spent two days sitting on benches in the sunshine topping up my vitamin D and burning my nose and making good use of the train rather than walking up lots of hills. We booked two days so we could take our time and didn't need to rush all over the park to get the dcs on everything they wanted to go on. It also helped that I have been feeling quite a bit better than I have recently and haven't had a 'funny turn' since Good Friday!

We had a great hotel suite, with a kitchen and a room for us separated by glass doors from a room for the dcs, so I could get a decent night's sleep and that would have helped, if ds1 hadn't kept me awake all night with his coughing - again!

Ds1 was a worry and was obviously very overloaded by the theme park, but fortunately loved it in equal measures, so it was worth all the effort of dragging my carcass down there and using the pushchair for support for two days.

I know I'm going to pay for it big time this week, but it was so worth it. My dcs have had the best time and are so happy and exhausted and I for once I don't feel like quite such a hopeless Mummy.

Oh well done Moosemama! Ds has been begging me to take him to Legoland and I've bottled it so far ( since being particularly unwell). He loves it and we used to go on occasional days so it was less busy than week ends. We managed disneyland last summer with dh doing most of the legwork. It is flatter than legoland but huge. Hope you can rest well and recover.

Great stuff Moosemama, I'm so glad you and your dc's (and hubby) enjoyed your legoland weekend. Hope you don't have a payback. I find the key is being able to lay flat every hour or so, then I get away with things - at my dd1's wedding, in the hotel where they were staying, I popped upstairs to her room now and then, and managed to fulfill my role of Mother of the Bride, phew!

I'm not strong enough to go with the full stone age diet thing, but I do focus on fruit, veg, meat and nuts. But I like cheese too much to give up dairy, though I did once, for about a week, and as it seemed to make no difference I went back to my strong cheddar and goats cheese with glee!

I can't do sugar though, and I've been tested twice and I'm not diabetic, but just a spoonful of sugar and I'm curled up in a foetal ball, throbbing pain and aaarrrgghh! for an hour or two. Once I'd realized that it was sugar that was doing this to me, I stopped it, and it's been better since. So, no cakes, no sugar in my coffee (which means pretty much no coffee) no puds. And I'd rather do without than use artificial sweeteners anyway. I can do one piece of fruit, but not more without a payback.

I've just been told that aspirin is helpful. Apparently there are studies to show it inhibits NKappaB, which is high in ME, and causes inflammation, which is what we suffer from (among other things). I'm going to try it, and I'll report back on that in a week or two, when there's been time to tell if it helps me or not.

The aspirin thing is interesting. I used to take a baby aspirin but gave up once I'd given up TTC.
I do not think I could give up cheese either! However I can cut down on dairy and grains ( we dont eat a lot of processed foods). Anothe suggestiob was breakfast like a king, supper like a pawper so I am attempting to eat a better breakfast. I will report back.

Thanks folks, I have just about managed today - everything hurts and I am beyond exhausted, but going on my usual pattern, it will be tomorrow that it really hits me. I have managed to potter and get the house straight enough for me to rest all day tomorrow.

I have a love hate relationship with sugar - I love it, it hates me.

I have been tested for diabetes a few times and my levels are always fine, but I have a serious chocolate addiction and if chocolate isn't available I'll move to the next most sugary thing.

I tend to do a sugar detox once and year and can then easily go for months without it, but in true addict style, it only takes one slip and I lose all self-control - particularly around chocolate.

I'm starting Rose Elliot's Vegetarian Low Carb diet in a couple of weeks, after we've got through a couple of 'events' that would make it hard to stick to. I seriously need to sort out my weight - I'm two stone heavier than I was this time last year, as I've piled it on since breaking my foot in June. I'm seriously unhappy with the way I look and feel at the moment and I know the only person that can do anything about it is me.

Well, as predicted, I have hit the wall today.

I was supposed to take the boys to school so dh could go into work early, but I just couldn't do it and have basically been lying on the sofa ever since I got up. Just about everywhere hurts, my brain has given up thinking and my vision is blurred.

To top it off I had a huge row with dh last night because he was panicking about getting everything ready for our festy trip next weekend. We need to clean and pack the camper, sort the food, pack for the boys to go to my Mum's and make sure everywhere is sorted for the house/dog sitters.

I started to flag last night and dh was cross because he had to take the dcs up to bed, so lost the light for vacumming the camper out. We then revisited the row this morning, when he realised how ill I am and how little help I'm going to be.

It doesn't help that I'm premenstrual and my flipping period has decided to schedule its arrival on the first day of the festival. Fortunately, this particular festival has very good toilets that are regularly emptied and cleaned.

They are also predicting rain on and off all weekend.

I've been contemplating cancelling, but dd is so excited about going to sleep in the camper with us, she is in love with the rainbow tutu I made her and can't wait to wear it and I have been really looking forward to going myself - we bought the tickets the day we got back last year!

I plan to rest as much as possible today and then try to pace myself with the packing over the next 48 hours and if necessary, we'll just have to finish packing before we leave on Friday morning.

Hi Moose

I am another CFS sufferer on here who is just about holding things together. I have had symptoms since 2000 when I was 18 but my formal diagnosis was 2006.

I have tried every remedy, "cure", lifestyle change out there but nothing has worked so far

Oh Moose I am sorry you are flagging. Its hard on everyone. Rows over low productive output caused by this wretched illness are so hard not to take personally (I am the worlds worst !) Sending a gentle hug!

Hi NorfolkNChance and welcome!
I am still looking for ways to improve as you can tell ( currently taking vitd and aloevera juice - now thinking of magnesuim creams and stone age diet. I have PVFS since 2+ years but suspect ( and my GP agrees) that I had mild CFS for some years before that. I am a lot better than 2 years ago but still very limited in what I can do.

Hello and welcome Norfolk - great name! Do you find you have better periods and crises, or are you bad most of the time?

Hi Magso, thanks for the hug. I am so cross with myself, I keep thinking that if I hadn't done so much yesterday morning, I probably wouldn't be this bad today.

I am contemplating Epsom Salt baths for myself and ds1. Has anyone tried that?

I have definitely noticed a steady improvement over the past fortnight and the only thing I was doing differently was taking a Spatone sachet daily as well as my Floradix and Omega oil. I seem to get anaemic very easily, so obviously do a poor job of absorbing iron.

Am really hoping I can get back to where I was at the beginning of last week as I felt better then than I have in a couple of months. A weekend lying on a picinic blanket in the sunshine at a music festival might have been ok - at least I could have stocked up on my Vitamin D, but I fear a wet and windy weekend will not have the same effect.

I have good days and bad but since having DD the bad outweighs the good. Don't get me wrong I don't regret having her but the sleep deprivation (even now at 20 months) will take a long time to recover from.

I am still managing to work (am a teacher) but only with the help of my wonderful DH who takes on a lot of the weekend so I can rest. Holidays are not the same as DD is in term time only childcare and is a very demanding toddler!

I have one of those Norfolk - 28 month old dd - she's a regular whilrlwind and a completely different ballgame than my two dses were at that age. Exhausting!

Hi Moose - I've been trying out Epsom salt baths but havent done it properly with enough salts yet ( awaiting supply). I am very sore and stiff today ( busy 2 days) so was going to try a proper dose today. I found a body spray called Magnesuim spray which I have been using ( in the hope of stopping the cramps in my feet/hands). It says it tingles if you are deficient - it certainly does (it stings!!) but my tolerance has improved. Actually might just go back to bed now ds is at school - pathetic I know . Hope the sun holds out for you!
NorfolkNchance impressed you are working and have a busy toddler! sleep deprevation is so debilitating.

What's this about Epsom salts then? not been told about any possible benefits of using those. I'll be interested to hear about it.
I'm feeling exhausted myself. Ho hum.

Solo, there's some info here but there's literally thousands of articles online about it if you google.

Its important to remember that magnesium can disrupt your body's ability to absorb calcium and vitamin D though. So you have make sure you don't 'bathe' too often. Calcium and magnesium levels should ideally be 1 to 1, but its hard to get the balance right.

I have read some good articles debunking the idea of using them for muscle pain relief, but there has been good research done on benefits for people with fibromyalgia, autism, high blood pressure and more. Dr Rosemary Waring at Birmingham University was one of the first people to prove that magnesium levels in the body actually do increase after an Epsom Salt bath, although not by massive amounts.

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