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!

im just moaning so apologize in advance.............

I have so many aches and pains...........im not sleeping and keep putting on a brave face saying im fine.im not.

Had a patient shout at me today in work and i know its because his procedure was postponed but it wasnt my fault, and i just wanted to cry........... but i rose above painted on that ME smile we have and got on with it.

My ex hubby was a pratt too at lunch time, because i dared to ring and ask how he got on at the GP with our 9 year old daughter today, and he was busy.....

all in all a crap day............no sign of the rest of the week been any better............

...............and breathe, sorry

Hugs, even if it's not mumsnetty, to all. Somehow we'll get through, and the science will find answers for us. Hope, be kind to yourselves, and hang on in there.

moose I reckon your eating plan is the right one. Major on veggies and protein, and never mind the odd indulgence. Keeping the blood sugar up with regular small meals has to be a good idea.

Sorry if I overwhelmed you with the Conference report. I wanted to go in previous years, but just didn't have the strength. I remember wishing someone would tell me what had gone on, so this year I was determined to provide that service for others.

Clouty I really appreciate it too! I would not be able to go.
Belle - sending a sneeky hug! Hope you have a better day today.
I am a bit low at the moment. Half term got out and about early in the week but now shattered. I only work a little but frankly was really not up to it and extremely foggy. Not good in my job. Got ds clothes all neatly ironed for school but did not put them away (he was in bed) and now they are all creased again!! Will send him to school creased haven't the energy to re iron. I am back to wondering about early retirement!!

Hope nobody minds me butting in here :) marking my place to read later when I'm not so fucking exhausted

ME has crossed my mind... The OP is very similar to what I've been feeling for weeks now. Blood tests for anaemia, thyroid etc all came back fine, I may need an ECG for the palpitations.

I feel a bit pathetic. And guilty - DH has a prolapsed disc and is now having to pick up my slack, poor sod. I feel like the stress of the last few months has just taken its toll; hopefully it is just a virus.

I hate the thought of being diagnosed with ME, purely because my uncle had it. He sexually abused me, and when the police came round (years later) my mum used the ME as an excuse.

Sorry I know that's totally irrelevant I just wanted to get it out.

I remember asking my mum whether ME was an STD.

Hope everyone is ok, I will come back and read everything later but I don't think I can stare at a screen any more. DH said I should go to bed but for some reason I hurt more lying down!

Hi fuzzypigfriday........hope your feeling less tired today.

Well all it was my birthday this week i was 38! had a lovely day ( 1st one since my divorce) kids but banners up for me and everything, had picnic in work, out for tea.truely i was spoilt rotten............so ROLE ON 40!! apparently life begins at 40.......ive been in bed since yesterday afternoon trying to recover from my birthday..............ffs it was one day of being normal [anger]

even

Just popping to say I'm still reading, having a crash and am away with school on Monday so it's all fun fun fun here!

Hi all! Happy birthday belleshell. Fuzzpig hope you havent got ME. Norfolk I don't envy you on a school trip. I went on many withDS when he was in MS school ( he is in SN now) and it was always exhausting although the theatre trip was good!!
I want to get better too so empathise with your frustration- there is so little to help! I am busy trying to find a curable alternative diagnosis!! I know slap on the wrist. Just cannot accept it. I have been reading about Vit D deficiency and as always when one reads I thought AH ha - thats whats wrong!! I had been taking a Vit D3 suppliment for several few months and I felt less wobbly and weak but sort of stopped when the sun came out and wondered if the low/crash of hlf term was associated with forgetting so am back on it. I do not know if the magnesium oil/ epsom salt baths are helping - but now I think back I have not been woken by cramp recently ( it was a common occurance a few months back)- so perhaps it is! Fuzzpig it may be worth checking with your GP if you need to check your vit D status? (warning am not a medic!)
Norfolk you sound like you are much better now than in the past. What do you think has helped?

Hi everyone, I'm still here too, though I haven't been posting much lately.

clouty thanks for the conference writeup. There is an official writeup on the Invest in ME website
www.investinme.org/IiME%20Conference%202011/IiME%20International%20ME%20Conference%202011%20Conference%20Report.htm

There is a conference magazine on the website too www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%205%20Issue%201.pdf

Welcome fuzzpigFriday! You asked if ME could be an STD. ME is strongly associated with a retrovirus called XMRV. I don't think it is yet known for certain how XMRV is transmitted, but it is a retrovirus, which is a special type of virus like HIV, or HTLV, both of which can be sexually transmitted. But for XMRV I don't think anyone knows yet for certain. In the conference writeup that I just linked to above it says "She then compared ME/CFS to HIV infection, and again outlined many similarities. The main difference here is that HIV is sexually transmitted and there is no evidence yet to suggest sexual transmission in ME/CFS."

Hi folks - had a better day yesterday, and managed to grab an early night. Felt fantastic this morning, and then got all dizzy and achy again. Mum reckons it is anxiety/stress/exhaustion which is a fair guess, but having had depression etc for nearly half my life, I feel I have enough insight/self-awareness to know it's more physical, if that makes sense.

Anyway I just came back to post because someone I know just got married, and she had ME for a few years. She spent her uni years in a wheelchair. But if our mutual friend hadn't told me, I would never have known she had gone through it, she is totally fit and healthy and active now :)

Thanks Kate. When I said I remembered asking if it were an STD - that was when I was quite young, before I really understood what had happened to me and before I'd told anyone. The abuse thankfully didn't involve anything that could transmit an STD, but I didn't understand that at the time.

just had an angiogram on wed because of my high BP and lost 30% of my vision in both eyes for 3 days aterwards. ended up at eye hospital. OMG i am so sick of hospitals. Got an appt for peripheral neuropathy on Monday. It is never ending. I am so sick of trudging round hospitals and going from pillar to post.

Oh Alypaly you are having a difficult time! Hospital appointments are exhausting. Hope todays is helpful. (gentle hug)
CSF Kate, thank you for the links. I see you can buy a DVD may consider that.

There's a very important movie available to view online, for free until tonight. It may shed some light on the delays in getting effective treatment for ME and many other illnesses. It is long, but very watchable, it doesn't need a lot of effort to watch. I strongly recommend watching it.

vimeo.com/24821365

Just to let you know that the facebook vote I posted about a few weeks ago ended up winning $40,000 for ME research. So well done to everyone who voted!

alypaly how did it go at the hospital?

There is another similar facebook contest to win charity funding taking place now, except for this one you can vote everyday. It's really worth doing as if the Whittemore Peterson Institute can maintain their current position they will win $100,000, and if they can rise up the chart, they could win $250,000 to spend on research. It doesn't cost anything to vote.

Here's how to vote

Log in to facebook
visit www.facebook.com/VivintHome and "Like"
visit www.vivint.com/givesbackproject/charity/769 and "Login"/allow permission.
Scroll down the website to the "Vote" button, and vote.

That's it! Then every day log in to facebook and visit www.vivint.com/givesbackproject/charity/769 to vote again, until the vote closes.

To read about the WPI's work, see clouty's gigantic post above, or see the other report here www.investinme.org/IiME%20Conference%202011/IiME%20International%20ME%20Conference%202011%20Conference%20Report.htm

It's really worth 60 seconds a day to get this funding, and it's worth asking friends to vote too, as with enough people we could get $250,000 for research which will make a huge difference.

Hi all

Sorry, I haven't even tried to catch up on the thread. Had a bad week. Ended up in Eye A&E on Thursday night.

Been having lots of visual problems with my right eye - kept making a mental note to book an optician's appointment, but then forgetting. My fatigue has been much better and parasthesia and speech problems haven't been around for a while, plus no more weird TIA-like episodes, so I thought I was getting better.

After a few weeks of eye trouble - vision clouding, blank spot in centre of vision etc, I started to get pain behind my right eye this week, plus pain when I move it left to right or vice versa. Thought it was sinus related at first, so took ibuprofen and soldiered on, but then on Thursday I was hit with excruciating pains that made me curl up in the foetal position and to be honest really scared me. I was at home alone with dd, my Mum was away on holiday and I had no-one to collect the boys from school. Took some ibuprofen and curled up in bed, but that still hadn't worked after an hour, so I took paracetamol on top - still nothing. Called dh, who was really cross, as his boss was in a meeting with the MD and Chairman and he's not allowed to leave without consulting him sobbed down the phone for a bit and he said to leave it 20 mins and if the painkillers still hadn't kicked in, call again and he'd come home - which is what happened in the end.

So, he arrived home, took one look at me and felt really guilty - called the GP, who then called me back to triage and told me he thought it was either acute glaucoma or optic neuritis and I needed to get to the Eye A&E immediately. (Its an hour's drive across the city from our house.)

So we dumped the boys on PILs (who we never normally let look after them without us there - long story) took dd with us and headed over with me curled up in a ball in the car all the way there. Arrived, only to find there was a 4 hour wait to be seen. Waited an hour and a half to be triaged, told her I didn't think it was my eye, due to all the weird neuro stuff I've been having and tried to persuade her to let me go home - no dice.

Had a full eye exam, checked eye pressure and optic nerve - all ok. Nothing wrong with my eyes - as I thought. BUT she is worried about my other symptoms and the fact that I have visual disturbance that's not coming from the eye itself and has send a letter to my GP asking for me to be referred to Neuro and for an MRI to compare results with my last one (2006).

I guess that means I can't hide anymore, doesn't it. Have to see the GP next week to get the ball rolling and yesterday the blasted numbness and pins and needles were back, along with problems thinking of words and getting words out and the occasional balance problem (mainly toppling when I go from sitting to standing).

I am a little bit p'd off that all the symptoms have come back and at the same time pretty scared. Its looking like the possibilities are TIAs (although the consultant felt this was unlikely) MS or back to Lupus, which is what was suggested last time I had an MRI, but was ruled out by a blood test. I have since found out that the fact that my bloods came back neg is not definitive and given my symptoms its still up there as a contender - false negs are apparently quite common with Lupus.

I don't seem to fit any of the profiles neatly, so I guess I will just have to try and be patient and wait and see what happens.

Meantime, we have gone and booked and paid for our holiday, so am seriously hoping I'm fit enough to cope with a full week's camping trip with kids and dogs by then.

Oh - and I've weighed myself and then sobbed for a full half hour when I saw the result. So am now eating really healthily and have started walking - not daily, but when I feel like I can do it (did 3.5 miles before the whole A&E debacle the other day and was so pleased with myself).

Oh dear Moose that sounds very scarry! How are you today and how is your vision? Glad you do not have acute glaucoma, but with all that is happening to you it does sound time to see the neurologist. Pain on eye movements can be a symptom of ON so it must be quite scarry for you especially with everything else! I had a positive ANA test - one of the Lupus tests when I was very ill - but later it was negative (earlier one was false + due to illness) so it sounds like testing can be a difficult. Sending a gentle hug.

moosemama - I'm sorry you're having such an awful time. Your mention of eye problems has reminded me of another possible illness that is sometimes mistaken for Multiple Sclerosis - it's called Hughes Syndrome - I can't see a mention of it so far. Apparently it's quite treatable.

www.hughes-syndrome.org/symptoms.htm

Thanks magso and CFSKate.

I have heard of Hughes Syndrome, but haven't had any problems with conceiving or pregnancy, so assumed it wasn't possible for me to have it.

I am actually feeling a lot better than I have in months. Still having problems with my right eye - despite being told its physically ok - and booked in with the GP this Thursday to discuss referrals re the neuro stuff, but a lot less tired, exercising/walking again and losing weight (9 lbs down 46 to go ).

I'm almost scared to say it, but it does feel like I might finally be coming out the other side of my latest crisis and weirdly, it also feels as if the neuro stuff isn't necessarily connected to the fatigue side of things - just a gut feeling on that though, nothing scientific.

By my reckoning, this last crisis went on for around 6/7 months. It kind of feels like a whole chunk of my life has been swallowed up and I am now surveying the chaos and damage that's been left behind. Not yet strong enough to sort it all out, but hoping to get there one step at a time.

I'm hoping if I can build on this, I can hopefully ward off any more crises. I think this last one got me due to all the stress of ds1 and school and his diagnosis etc and then a few viruses one on top of the other, but before that I hadn't been this ill since just after he was born 9 years ago.

My diet is now completely cleaned up and super healthy and I am continuing with my supplements, so everything should be in place for me to continue recovering, provided I don't get any curve balls thrown at me.

Need to be fighting fit by September when we start the looong fight for ds1's statement, as I know that's going to be majorly stressful and I'll need some resources to call on.

How is everyone else doing these days? Its been very quiet on here, which could be either very bad or very good.

moose i get the same thing with my eye when i am v v fatigued - immediate rest is the only thing that stops it

Thanks sharbie, its strangely reassuring to hear that someone else gets it too.

Hi all

Have been to the docs today, to finally discuss all my weird episodes and apparent neuro symptoms and give them the letter from the Eye A&E consultant.

She's ordered a raft of blood tests and referred me back to the neuro I saw 6 years ago.

I also found out that the last lot of lesions on my mri were 'white matter subcortical lesions' - couldn't see any more than that over the her shoulder though.

She wouldn't be drawn on what she thought the problem might be - but did tell me off for not going sooner and in particular for not going when things were at their worst.

So I guess I just wait for my appointment to come through now.

Its been a bit of a day of it actually, ds1 was also at the GPs today after being really run-down, exhausted and wobbly, but without obvious cause. I also discovered the other day that he's lost about half a stone since he was last weighed in January, despite having a really good diet, supplements and eating like a horse. They did find a throat infection, although not one bad enough for anti-biotics and have also sent him for a lots of blood tests and contacted his paed to ask them to bring forward his next appoinment and see him urgently.

We went through similar with ds2 a couple of months back (although without the weightloss) and eventually discovered his electrolytes were all out of kilter due to the movicol they'd had him on for months and he was low on vitamin d. We adjusted his diet, added some better supplements, took him off the movicol and made sure to kick him outside every afternoon and he made an incredible recovery super fast.

Am really hoping its something equally as simple with ds1, but my guts are telling me different.

Hi all.........im going to moan so i apologise in advance. i could cry.....i am in so much pain, and buggered and i really dont have a reason to be. i have been like this all week, but the previous 10 days i have spent by a pool in cyprus doing not very much at all. i wasnt too bad there just a few off days, but honestly i feel i am heading for a crash, and i cant do it.......i think i will lose my job if i have much more time off............

Oh Belle, you poor thing, I really feel for you.

Do you think it could have been the travelling. I always find travelling knocks me for six.

Are you taking any supplements? Anything to support your underlying health? I usually find when things are getting too much to cope with it really helps to take floradix and a really good quality multi-vitamin. I've also found omega oils make a big difference to me. It might be worth considering trying something to just help you head off a crash, especially if you can't have any time off work.

I've also found that my energy levels have drastically improved since I removed all processed food and refined sugars from my diet a few weeks ago. I'm now eating a super healthy diet of mainly fresh fruit and veg with a decent protein source at each meal and making sure to have health snacks between meals as well. I am definitely a lot better and an added bonus is that I've lost a fraction under a stone in just over a fortnight!

The other thing I would have suggested is vitamin D, but you should have already topped up your stores of that if you've been lying in the sun in Cyprus.

You never know, you might just need some time to get over the travelling and if you make sure you rest at every opportunity, you might not crash.

Hopefully someone else will come along with some more suggestions soon.