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!

We are going to do it the other way round. I thought if we went to the house first we'd never get ds1 away without a huge meltdown. So he has it to look forward to for the second week and it will also help him to relax and normalise things after the camping.

He's struggling at the moment bless him. We've put him on a really good quality omega supplement and they've had a noticeable impact. He is definitely more aware of his own emotions, but struggling to cope with them. Fortunately they've also levelled his mood out so we aren't getting the mood swings and instant tempers we were getting before.

Best thing about the omegas for me has been the sudden disappearance of my keratosis pillaris. Yay, no more bumps on the backs of my arms and thighs for the first summer ever! Not that anyone will ever get to see the backs of my thighs - or the tops of my flabby arms for that matter!

It looks beautiful and tranquil Moose. Perfect in every way I really do need to stop clicking on links though what with my fish phobia and all. You would think I'd have learned by now

We are holidaying at home this year. We've rented a log cabin in the peak district so fingers crossed for good weather. A nice relaxing break will do me good although not sure how relaxing a holiday can be with two hyperactive kids and a dog!

Just back from surgery. Thankfully my RAST results turned up which saved me from another dreaded blood sample yaaay! However it hasn't shown anything up and my gluten level was negative. I'm still convinced that Gluten and wheat are my enemy though so I'm still going to cut them out of my diet anway. These tests aren't always accurate as I discovered with DS3 who has a severe dairy milk protein intolerance but who had a negative RAST for dairy

Silly me. That should have read "Just back from GP surgery". I haven't had any ops recently thank goodness!

Oops, sorry I didn't know you had fish phobia. Some of the photos are a bit yeuch, it is a popular fishing spot.

I will raise you one dog and one child! We have the two boys (9 and 7) dd (who is 2 years 3 months) a 12 year old collie x belgian shepherd who thinks she is a puppy and is still as lively as ever and a lanky great lurcher who is just dappy and can run like the wind. CAMPING! I must be out of my mind!

We were told it wasn't worth doing the RAST for wheat with ds1. He tested negative for coeliacs, but his food diary and physical symptoms were so tallied that the paediatrician and dietician said we have to treat him as if he has it anyway. They said the same as you, the RAST doesn't give reliable results for wheat so its not worth pursuing.

It's ok re the fish thing. It's my own fault. I really should have learned my lesson about clicking on links. A couple of weeks ago I was lurking on a style and beauty thread about shoes and clicked on a link. Up popped a pair of fish flip flops . I got the fright of my life, dropped my laptop and nearly broke it and my heart didn't stop pounding for hours because of the fright I got. So for about a week following said fish incident I covered my eyes when clicking on every link just in case. At least your link wasn't a fishy one. It was only because I had a nosey look at the gallery pictures. But just goes to show that I'm not safe anywhere...even in style and beauty

CelestialstarlightsPassion Thank you! Sweet of you to say nice things about me x. If there's anything puzzling you, just ask. I'm glad you're feeling a little better, and your ds1 sounds a treasure (sometimes, at least). I promise that this is a fi*h free post

moosemamma Please be careful not to overdo things. Take every chance you can to get your feet up and your head down. This POTS thing means your brain is not getting enough blood to work properly when you are standing up.

I'm booked for a few days in London from the 19th May, I'm going to the Invest in ME conference. I've booked a coach journey, hopefully if it's quiet (and it was last time) I'll bag the row of three seats at the back and lie down most of the way. It really makes all the difference.

It's lovely to have something to look forward to. I'm sharing a house with some other web friends, which will be interesting. Last time I met up with fellow forumites, they were all lovelier than I had imagined. I hope it's the same this time.

Hi treedelivery sorry you're bumbling off annoyed, me I wobble off! Seriously, when people ask me how I am, that's what I say - wobbling on It's a killer when you spend ages writing a post and then it disappears... I should know. Darned brainfog!

Afternoon folks

I have spent a frustrating morning trying to get my head around some ASD related stuff. Ds1 is acting verrry strangely at the moment (big big BIG to dos with him last night) and we urgently need to do something about it, but don't have any professional help and obviously don't want to do the wrong thing. I can't get my head around, whats the ASD stuff, whats the 9 year old boy stuff, what could be related to one month of omega supplementation and whether or not there's something else going on. I keep reading and re-reading, but it just won't go in.

I hate, hate, hate, feeling like this. I never used to have to stop and think about anything, I just took it for granted that I always had the quick answer for everything. Everyone relied on me to be in control, know and organise everything and I feel like I'm letting everyone (me included) down these days. They all expect me to have remembered or done something and then get caught out when I haven't - its frustrating for all of us really. I miss the old me.

Clouty, am I right in thinking the POTs thing is blood pressure related - I did read about it and watch some youtube stuff last week, but I've forgotten it all already. I only ask, because I've always had what's considered to be low blood pressure - don't ask me the numbers - I just know they've always said the same thing whenever I've had my BP taken over the years. Its mega low in pregnancy, which is probably why I faint so much in the first 16 weeks. Apparently my Grandma had low blood pressure all her life and just before she died, she was under a doctor who told her it can be just as much a problem as high blood pressure, just for different reasons - don't have a clue what the reasons though (I do know her passing was completely unrelated to it though).

Hope your essay is coming along nicely and you're feeling ok tree.

hi tree............job is very stressful as a prescibing co-ordinator and as it is a new role, i dont think they realise how BIG the workload is. I like it, but i havent got enough hours in the day and i am already doing overtimeThey have never had one before. so coming home with a really tight chest which i am hoping is just stress. Which i really dont need at the mo, but i need the money.

clouty....you say inside info. Are you a doctor?

happy easter everyone..........i hope you all feel better after some sunshine this weekend

Ooo Aly - be careful! I guess the hours are fairly regular so that is a good thing? But take care not to burn out!!!!!!!!!!

How is everyone else?

Hey Moose, sorry to say have hit a down trend. This is because I spent 2 hours in town the last 2 days and had a busy monday. Now have the runs and the aches and the skin and the fuzzy head and the sick tummy and the coming up stairs slowly or using hands.
I've also spent 8 hours a day working on some academic stuff which can't be helped but has cost. I have to keep going, the girls are away do I can do this. I have to keep going. Brain not too fuddled so that is something. How are you? Gosh I hope it passes soon for you Moose. How is ds1 today?

wish I could get to dr today, I'd like him to see me like this.

Oh and last night I read the info sheets at some ME charitiy website. Made me cry It's like someone kept a diary of my life! Not in a good way though, gosh so many things I have just shrugged about are to do with this. liek the runs. I have often wondered why my bowels have gone from totally fine to unpredictable. Now I bloody know!

Hi Tree

We have been through some pretty big trials with ds1 in the past 48 hours, really stressful and upsetting - but I think we're back on track now.

I had another funny turn this morning, slurred speech, tingling arm and leg, felt like my consciousness was slipping away - much like all the previous ones. Dh has the foresight to grab his phone and video it. I wasn't impressed at the time, as all I wanted was some reassurance and comfort - but thinking back, he is a very smart cookie, as now I have something concrete to show the GP. Mum has tracked back and diaried all the episodes we could remember between us and I think that wil help as well.

My sister and nephew have been for a visit this afternoon and I managed to walk up to the park with them (3 minute walk) and then down to the shop (3 minutes the other way) to buy everyone ice lollies. I only managed about 20 minutes in the park, but the dcs all had a great time anyway. Am completely horizontal and wiped out now though. Dh is making me a salad and doing the dcs bedtime all at the same time, bless him.

It is upsetting to see your life all laid out in a medical fact sheet. It always upsets me, but is validating at the same time.

My big thing today is being extremely p'd off at how much weight I've gained. I was looking at photos of me this time last year and I look like a different person. In fact I look like twice the person. I desperately want to lose the weight, but can't imagine how without exercising. Historically, I am usually better at this time of year, build up gradually to walking 5 miles a day and eating healthily and the weight just falls off, but that's a distant dream these days. I did do a no-carb diet for a fortnight recently and lost a lot of weight, but of course put it all back on and then some as soon as I started eating carbs again.

sorry everyone is feeling so unwell. You all seem to have the same symptoms as i do, i was hoping my problems would take a turn for the better as it did used to be a bit seasonal and it sounds as though everyone elses problems are normally easing by now. Its weird how everybodies problems seem so bad at the moment.

Have been soooooo knackered today, i just slept in the garden and i forgot to put a sunsscreen on so i am burnt again

Joints in arms and leds are killing me today and my hands and fingers feel puffy. Right hip joint is really grating today. knackered walking up and down the stairs.

Oh, everyone, I'm so sorry everyone's so poorly. I'm worried about you all. Now, one thing that makes me much worse is being out in the sun. Strange but true - darned disease. I have some hats to wear, and I seek the shade - but I do like garlic, so I can't be a vampire, can I?

Moose With ME we have low blood volume. Our hearts don't work as well, and these contribute, but are not the only reason for POTS. My blood pressure used always to be low, but it's high now. It's impossible to exercise much without crashing, that's one reason. So we can have super low, or high blood pressure, but not enough blood gets to the brain. It's called hypoperfusion. BTW I've gained weight too, I was so fit, and now I'm a chubby slob... but I can't odds it. One thing I've noticed, when I'm feeling better my weight goes down, and when I'm worse it goes up.

aly I am not a doctor, though I was a nurse. When I say inside knowledge, I mean inside my body

Now, what I am going to say here is not what your doctor will tell you, but it is the distilled wisdom of a lot of ME forums (is that fora?) and thousands of scientific studies. With Myalgic Encephalomyelitis, we have damaged mitochondria, the energy factories of your body. They send energy in the form of ATP to your organs and muscles. Because they are damaged, they do this job very poorly, and it takes ages for them to convert the waste ADP back to ATP. Every time we crash, it's because we have damaged our mitochondria further by doing more than was comfortable for us. Carry on pushing through and you may end up bedbound, like some of my online friends, and people die from ME. Lynn Gilderdale. Sophia Mirza. May they rest in peace. Among many others.

I hated typing that bit. But it is serious. Stay within a comfortable level of activity, get great nutrition, take lots of vitamins and omega 3. Consider taking some herbal antivirals and supplement magnesium for the muscle aches, and you will slowly get better. Check out this page, there's a link to a video by Dr Nancy Klimas, one of our few expert doctors.

Overdo it and you will get worse. We are lightweights. And the doctors don't even know about that. In a survey of medical text books, ME was 0.0013% of the content, yet a quarter of a million of us have ME in the UK. Thank you so much, Professors Wessely and Sharpe, for telling everyone we have false illness beliefs. Not. Grrrr.

The people who are working hardest to understand and cure ME, MS, and many other neuro-immune diseases are the Whittemore Peterson Institute. They are not just about XMRV though Wessely and Sharpe would have you believe so. We can win them a lot of funding on facebook, please take a look here.

Welcome to this rotten rabbit hole. Alice will be along shortly.

Oh darn. Killed the thread. If anyone is still reading, the place I found support, friendship and advice online first was Foggy Friends. www.foggyfriends.org There's a lot of good people there.

You haven't killed it clouty :)

I used to be on Foggy Friends some years ago...also been on several others and am on PWChat, though not been on for a long long time; I do have a few lovely members as FB friends though...

I'd love to be well again...

Me too, Solo But I'm better than I was. I soon get worse if I try to fight it though. Look after you xx

I'm still alive too Clouty [bugrin]

Tired and grouchy today after a couple of more ohysical days pottering in garden and some late nights watching movies. Seems a big cost for not muchgain. I mean I've had a cnice weekend for a change but hardly an all night rave followed by session in the pub was it [buhmmm]

Promised myself I'd make mousaka and a choc egg cake for the dds coming home from their holiday to nanas. Hardly seems likely now. Pah.

I find it hard to visit charity pages and so on. I think because I have no diagnosis and am not really sure about all this yet, I feel like they are either not talkng about me or talking far too much about me which depresses to bejaysus out of me. Frightens me actually.

Aly - have things got harder since the new job? Am delighted you have that ace job but worried for you too.

Moose - will you take your diary and video to the dr?

Hello Solo it's good to hear from you. How have you been over Easter?

I know I am going to get shot down in flames but I am getting used to that now

I feel so terrible that you are all suffering and have been there myself. In 2006 I was bed bound for 9 months and during that time could not even sit up. I was diagnosed by my GP and then a ME/CFS specialist came to see me at home and confirmed the diagnosis.

I have children and led an active life it was hell on earth even the sound of the children laughing and playing made me feel worse I had to be in a darken room and was tube fed.

I did the lightning process (I can hear Clouty sigh already!) but it did and does work for many people with ME/CFS. It is a truly horrendous illness and so many people have been helped by LP that it is a shame many people who have not done it write it off immediately.

The proof for me is in the life I have now. Back working in a job I love back being a real active Mum to my children. I don't care how it works but it does for many people. I am in no way connected to LP just someone who has got better from a truly horrendous illness.

I will not be back to comment on the negative posts by many people re LP. Only to say they are usually people that have not done it or do not take it on board. I just could not sit here even though I expect the usual cynical response from people who have not done it when there is help for many of you.

I don't think you will get cynical responses on here dinamum. This is a very supportive and caring thread. I think most, if not all of us, are are open to and willing to investigate anything that might help and can appreciate you caring enough to share something that has obviously helped you to get your life back.

I have heard of the lightening process - in fact I was linked to it from another thread only last week and have read a bit about it, but feel its probably not for me, at present, for various reasons. I haven't discounted it completely though and will do more reading around the subject. I would never write anything off without careful consideration first and am always grateful for any new suggestions.

We all have our own paths to walk I suppose, what's right for one person may not suit another and sometimes even if its the right thing it might be the wrong time, iyswim.

Thank you for sharing your experiences with us.

Hello again. Sorry so many are poorly at present. I crashed for a while but am now doing well - for me.
Tree I do not really have a diagnosis either - PVFS since pnemonia but I was ill before that and I think I got pnemonia because of the ( whatever/ CFS) - though trying to climb a (little) mountain whilst really ill didnt help! Glad you are feeling somewhat better.
Moose I had very similar symptons to you ( parathesia in feet and hands often on one side more than the other, fainting or floppy turns - too exhasted to speak/ think etc. I say was because i am doing a bit better now. The frustrating thing is GPs blamed depression/ panic attacks but I am quite certain it was neither.
Iwas very interested in the links youve posted Clouty and CSFsara. The mitochodrial failure stuff from Dr Myhill fits my symptons perfectly and is such a relief ( I have the added problem of dodgy lungs like many others). Mitochondrial dysfunction has been implicated in autism (Ds has ASD) as well although I cannot find the quotes. My father has very similar symptons to me ( I know he is older and has even dodgier lungs and has PC) but it is intersting.
oh I have tinitus too it was a lot worse when I was really ill ( in hospital) and I have very little finger print detail - like they are polished with dry cracks longitudinally.
We have just been on holiday - luckilly getting a late availability camper van to drive to our usual holiday house (car went wrong - and Ds is like your ds moose likes familarity).It worked brilliantly although too expensive to repeat. We visted many places, so more interesting than the usual) parked next to beaches and in woods and were able to let ds play ( he loves trees and playing in streams) whilst sitting in comfort watching him with all facilities on hand! I could rest/cook and pace myself - and felt like a normal mum for once IYKWIM
Ali your new job sounds interesting. I hope it is not too physically demanding. Do you have to take VitD3 because of the photosensitivity?
Solo you sound very poorly so hope the good weather is helping.

Hi Magso

I love our camper for that very reason. I can sit and have a cuppa in the van with the door open and watch the dcs at the same time. Its even better when you find a beach you can drive onto. I think it also helps with ds, as he always has a little piece of home to feel safe in wherever we go. Its also good to calm him down if he gets overloaded, as we can just close the curtains and give him a book for half an hour.

I often sit in the back with a blanket, hot chocolate, book and a beautiful view to look at while dh takes the boys and dogs for a wintry hike.

The only problem is that its getting really old now and needs a lot of money spent on it. Dh wants to sell it and get a different one, but there's no way ds1 would ever countenance us parting with it.

Good to hear you are feeling ok and had a good holiday.

is tinnitus a symptom of ME.?

Chipstick-I don't think so? But it makes me feel even more decrepid!
Ah Moose it was lovely to have the camper -I usually come back from holiday exhausted. We did park next to a deserted beach ( northern France) - I could have stayed there for ever while ds collected shells. DH has started looking at old campers on line! I just need one that can wash and iron all for me!! ( I find ironing exhausting - and have a huge mountain at present)

I think tinnitus is a very common thing in ME sufferers; that's what I was told.