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!

Ok, so spoke to soon yesterday. After three days of very late nights over the weekend due to prep for dh's 40th birthday party and then the party itself, last night was the second consecutive night of dd constantly waking and screaming throughout the night. Then I had to do the morning school run (which dh normally does for me when I'm bad) because its parents evening tonight so he needed to go in early in order to be home in time this evening - and I am literally on my knees.

I was so snappy with the boys before school today that I had to apologise to them both before they went in.

Dd is still in her pjs (just shoved a fleece and coat over the top added some wellies and zipped her in the buggy snuggle for the school run ) and is desperately in need of a bath (as am I) and I just can't move. Am so with you on the lazy guilt!

I have to find some energy from somewhere, as we both have to be sorted for school run + homework x 2 + parents evening and then I have to go and visit my mum in hospital, as she had a hip replacement yesterday afternoon.

Really don't know what's up with her sleeping. She's usually pretty good, but keeps waking up screaming and wanting a cuddle then having a hissy fit when I won't get her out of her cot. I'm basically getting no sleep from about 2.00-2.30 am onwards. I think it must be nightmares, because she was wittering on about "No! Not Thomas (the Tank Engine) Mummy" in the wee small hours last night.

I honestly don't know how you ladies with long shifts cope - I would be a hopeless gibbering wreck in your shoes.

Forgot - doh!

Tree, are you managing to remembering to take your ADs? If you are and you haven't felt any improvement yet, get yourself back to that doctors office poste haste. His first line treatment is obviously not working, calling into question his opinion/dx, so at this point he should be referring for a second opinion.

If necessary point out that GPs are by their very nature 'generalist' rather than 'specialist', so can't possibly be expected to recognise and identify every problem in every person. Thank him for his time and support thus far but point out that it has gone beyond requiring a few ADs, it obviously isnt depression and you want to be referred to and checked out by a specialist now.

You are going to have to get tough and fight for yourself now - think what you'd do if it was one of your girlies who was this ill - you'd be kicking down doors to get to the relevant specialists. You deserve no less than they do.

(I know, I know - I can talk the talk, but not walk the walk myself.) Seriously though you can't carry on like this - its just not sustainable with your job and shifts etc. I really wish I could come with you and put my foot under the docs backside myself.

Hi Tree! Sorry somehow missed your post! Its difficult when people say you look well ( but you feel awful). It feels like a critisism but is probably people trying to be nice!! I get to the zombie state a lot - always after work ( often get to that state before the end of my shift and I still have to get home!)
I agree with Moose - time to go back to the gp. That running on adrenaline thing - until we crash seems common amongst us?
Moose - sorry you are not so good today. Hope you can rest up and recover over the next few days.

I am feeling much better since I started the Vitd suppliments although my breathing is a lot better ( O2 sats just about normal now - yippee!) so that is more likely the cause of improved endurance. I went for a pilates pre class assessment yesturday - so I can learn the very gentle basics. Not been hit by a low so far( from the unacustomed pilates) - but in all honesty I did very little!! I will report back!!

Spoke too soon about being OK after Pilates! Now have my wobbly legs and heavyness back. Everything hard again. At least I got a few jobs done first.

Hi all.

I am ok-ish. I am fine as long as I am on with something and not really having to concentrate or pause. If I stop then I may fall over.

So that means mn is actually rally tough at the m oment. Does anyone else find this? If I really read and try and rememeber who said what and why, then I feel tired and hopeless. DOes this make sense? So I guess I'm saying I'm not being rude - just 'affected' at the moment.

I have to plan a lesson and I can't get my head to engage at all.

Magso - the running until dropping is so so common on this thread. Even more so amongst shift workers. I think it's bread into shift workers and mothers - we simply have t keep the show on the road. I'm sorry pilates came with a price.

Celestial - are you immediate managers being supportive? Are you off work curretntly? Sorry - I can't get my head to work
My work have no idea about all this, as it is very new to me and I have no real diagnosis or decision made myself even. This thread started as soon as I wondered! I love this thread

How are all you others? OK I hope? Haven't heard from nicecage, alypaly and SOLO in a while - hope all is well?

Hi tree. I've been off work since October but got my misdiagnosis at the beginning of Feb. Just the usual "eliminating everything else it could be" and "there is nothing more we can do for you" approach.

I've had a run of three relatively good days by which I mean I've managed to get dressed and even go out and do a little bit of housework. Yay! Even on a good day though I still have the "lazy guilt" thing because a good day for me would be a lazy day for a healthy fit person and other thing and people suffer for it. Mmmm I don't know if that makes any sence.

I'm with you on the memory thing tree. Apart from the extreme exhaustion my memory was the first to fail me. I couldn't remember patient handover reports at work or remember simple basic information or even use my own knowledge and expertise because my memory let me down. Which is absolutely no good for the environment I work in. So I'm also not being rude if I miss anyone out. Might have to write things down as prompts to help me write a post. I did this last night on the fly thread and it worked a treat but I am on a good spell. I know I wont always have the energy to do that.

moose and magso I hope you are feeling better soon xx

I'm soooo proud of myself. Today I managed to do quite a bit of housework! More than I've been able to do in months. I know I may pay for it later but I haven't had this amount of energy in a long long time and especially not sustained for a few days in a row

Hope you guys are all ok x

Oh Lord I had to pop by and just say bred not bread

Totally there on the handpver thing, I try really hard but I know I'm not hearing anything. It's very very odd.
Well done on house work.

I have a lesson tomorrow adn the more I plan, the deeper sink. Am giving up and off to forage for food.

We are going away this weekend We have my mum with us so if I pass out in a chair somewhere the kids still have a cracking time. Woooo Hooooo.

I'm really pleased you got some housework done Celestial. Nice one, now rest~!

Just saying Hi to this thread. I don't think I have posted here before (I can't remember - having a bad day).

I have a vague diagnosis of CFS/PVS but I am also hypothyroid and have endo (though that's in remission).

I have been well -ish for about a year now but have just relapsed, possibly thyroid (though the GP, in his non-expert opinion doesn't think it is that), could be stress (public sector work got a bit stressful recently ) or could be PFS flarng up after swine flu before Xmas and now a coldy thing. Have had a sore throat and disrupted sleep for a few weeks - always a clue.

I feel so disappointed :( I have had a 'normal life' for the last year - apart from low level symptoms like gritty eyes and dr skin - and was having thoughts of promotion, study and even moving. Now I feel like, here I am, back on the sofa, can't even go to work today. What a waste.

I am also gutted about the XMRV thingey being disproven. I had hoped through that they might find a cure.

My PVS started when I was 11 and had 'a virus like glandular fever' then again when I was graduating with a 'virus like glandular fever' which left me ill for months. Since then it comes and goes, and at the moment has flared up. I got tested for FM and MS and the neurologist said my symptoms were probably my 'Chrnic Fatigue'. That's as close as I have ever got to a diagnosis.

Sorry for rambling, I am not coherent today

Hi all. I'm managing to keep up my housework without too much trouble. I can't believe the difference in me these past few days. And although I'm very cautious re overdoing things I'm so excited about being able to them that I can't stop.

I still wake up every day feeling like i've the hangover from hell though and i'm still zombified for the first couple of hours. But once that wares I feel more normal than i've felt in months.(usually zombified for most of the day- so big difference indeed)

Hello Tigerseyemum I'm sorry to hear about your relapse and hope you start to feel better soon. It's so frustrating to want to do these things but be physically unable to do them. I only joined this thread a few days ago when I started to feel stronger and able to write. Before then I was zombified and wouldn't have been able to post. I know there are quite a few regular posters on this thread but I suppose given the nature of our condition it isn't always possible to post. So if anyone is reading who can't manage to pop in then please know that I'm thinking of you.

Tree How was your lesson today? Did it go well? I hope it hasn't taken too much out of you. Also I hope you have a lovely weekend and do enjoy having your mum around to help out with the DC's. Maybe you can enjoy a rest too

Moose and Magso Hope you are both ok

Evening

Tigerseye, welcome. You sound similar to me, in that I have gone for long periods of my life when my symptoms haven't reared their ugly head and then it hits me so hard psychologically, as well as physically when they come back. I hope this is just a minor/short lived episode for you and you can soon pick up where you left off.

I was given the PVFS label waaay back in 1989/90 (so long ago I can't remember which year exactly ) and have gone through times when it all seemed like a horrible memory - until the next time.

The beginning of this year has seen a resurgence of symptoms I haven't had in a long time, although if I'm honest with myself last year was bad and I spent a lot of it clinging on by my fingernails, so I should have seen it coming.

Celestial, urgh - the hungover feeling. Bizarrely, I didn't get a hangover on Sunday morning after actually having drunk copious amounts of gin the night before, despite the fact I almost never drink. That said, I did get a nice lie in and a cooked breakfast made by dh and his best mate and I do wonder if the alcohol actually helped me to relax physically and mentally, which in turn helped me to cope. Not a good long-term coping strategy though, obviously.

This week has been a bit of a downward slide (to be expected really after all the pressure and sleep deprivation last week and over the weekend). I woke this morning feeling so bad I just burst into tears. Everywhere hurts, joints, muscles .... brain. Have spent most of the day stuck on the sofa with dd creating chaos around me and demanding stories with menaces, which I then find I can't actually read, so she gets cross with me. Fortunately dh came home and made lunch for himself and dd, as usual I've lost my appetite. I know I should eat, but just can't face it.

Managed to get out of my PJs five minutes before school pick-up, then ds1 was not only late out, but had to go back in twice, meaning we ended up being the last people in the playground. We only live across the road and I was late going out, but it still took a staggering 45 minutes to collect both boys and get back in the house! After all that I was totally wiped out, but still had to sort out an after school snack and do spellings and reading with them both.

Days like today I would love to just abandon the after school routine, but that's not really an option when one of your children is autistic and needs things the same day in day out. If you do change it, its not worth the resultant stress and inevitable meltdown.

Am sat here now knowing I should have already fed the dcs and should definitely get up and prepare something for their tea now, but just can't face it. I gave them the only junk-ish food we have in the house yesterday (mushroom and chickpea burgers with smiley faces broccoli and carrots) which leaves me with no choice but to actually cook from scratch tonight.

Tree weekend away sounds lovely. Hope you manage to get some real relaxation time with your dh and Mum to take care of the girls between them.

Magso Sorry you ended up feeling so rough after the pilates. Its so frustrating when you are full of hope that something is going to make you feel better.

Wow Moose You did so well to type all that after the day you've had. Sounds like you are having a crappy time. I too have SN children and truly understand how hard it can be to cope. DS2 has tourettes and hyperactivity. It has taken 18mnths to assess him for aspergers/high functioning autism. And last month the team agreed that he does not have ASD but has many traits which are on the scale ...yeah right! Lots of banging heads against walls over the last couple of years...and that's just me! DS3 was born with laryngomalasia, constantly vomited, didn't grow, had surgery, continued to vomit, still didn,t grow and was then only last summer diagnosed with milk protein intolerance. He's now dairy free but still quite lethargic and continues not to grow [exasperated emoticon]. To throw into mix DH has Chrons and is really unwell. How is a girl to cope?

I hope you feel better soon Moose. I'm thinking of you. Hope tomorrow is a better day for you

Celestial, it sounds like we have a fair amount in common. Its taken two years of fighting to get ds diagnosed with AS. He finally got his assessment and dx mid January followed by another of hypotonia and sensory issues a couple of weeks back.

We are currently having big problems with his eyes and are not sure if its sensory or neurological, so that's the next big thing to get sorted.

Meantime, ds2 (6) has been really poorly and congnitively low, so had ourselves, his teacher and the GP really quite worried for a while. He did seem a bit better until this evening, but then he went downhill again. Back to the GPs with him next week to review where we're at and discuss a possible referral. He's also has a lot of eye related problems at the moment, but they've been ongoing since he was about 3.

Fortunately dd (2) is fighting fit and chipper at the moment, although that does mean she has all the energy of a typical lively two year old - which in itself can be a bit of a problem for me. Luckily she's very patient and really good at entertaining herself when I'm having a particularly bad day. As long as I'm there on the sofa and she's got her toys to wreak havoc with

It sounds like you have so much more than me to deal with though, its no wonder your body decided it needed a break. Hope things settle down for you soon.

My post was just a brain dump really. Can't remember what I said now and am too tired to read it back!

Fortunately dh walked in just as I finished typing, so he did the tea while I curled up on the sofa under a blanket.

Am off to bed now, most probably to toss, turn and not sleep. Why is it that just when we need sleep the most its precisely the time it eludes us?

I know what will keep me awake - guilt. Mum had a hip replacement on Monday. We've been keeping in touch by text and I went to visit her on Tuesday evening (difficult to get there as I don't drive and there's no direct bus service, so could only go when I could get a lift) but today I haven't really kept in touch with her since texting first thing. I just couldn't deal with someone else's pain etc while I was struggling to get through the day. Now I feel awful and really selfish. I know my Stepdad is there with her and she has lots of friends visiting and my two sisters texting etc, but I'd hate her to think I don't care.

Moose you musn't feel guilty about your mum. Like you say, she is being well supported and is most probably exhausted too. Apart from that she must know that somedays are a struggle especially with your DS's health problems as well as your own to contend with.I'm so sorry to hear about the problems with the children. It does seem that you have loads on your plate at the moment and having this level of stress in our lives definately doesn't help our CFS/ME. So don't be so hard on yourself. Your mum knows that you care! I hope everything goes well with her recovery. It will be a relief for you all when she's up on her feet again (hopefully painfree).

I know! Why does it happen? This is why I'm always on MN awake at this time of night/morning. There's just no point going to bed to lie awake having to endure hours and hours of DH's snoring!

Isn't it funny how kids can amuse themselves when we mums are ill. DS3(3) is happy to play with his toys and watch cbeebies while I sleep on the sofa on my not so good days. But he makes up for it on my better days by keeping me stressed on my toes.
Anyway like I mentioned earlier, I hope tomorrow is a better day for you and if I may say...your DH sounds lovely. It's nice that you have someone taking of you too

Thanks Celestial. Have spoken to Mum via text this morning, explained about yesterday and she was fine about it. Can't help feeling guilty though. She does such a lot to support me usually, I really wanted to be there to support her through this. My sister is coming up to stay with her next week, so the pressure will be off a little then.

Dh really doesn't understand why I don't just go to bed really early to try and counteract the tiredness. He's one of those people who is asleep (and snoring ) as soon as his head hits the pillow and just doesn't get why I toss and turn incessantly before falling asleep, only to wake up within the hour and do it all over again. He constantly nags at me to go to bed in the evenings and it really winds me up, because I know there's no point in going. He thinks exhausted = early night = sorted.

He's so good though and for the most part very patient and supportive, even though he can't quite get his head around it all. I think it helps that we had just moved in together when I had my first ever episode and was bedridden for a long time - so he's seen me at my absolute worst and knows how bad it can get if I don't stop and listen to my body.

I think that as I've actually had a fairly long time without having a bad episode its easy for other people to forget and/or think I'm 'cured'.

Not much better today, slightly less brain foggy but so much muscle and joint pain that I don't really want to move. My bad ankle is the worst, but bizarrely my other foot is really painful as well and I don't normally have trouble with that one.

Ah well, thank goodness its Friday, hopefully with a weekend of resting up, I'll be good to go again by Monday.

Hope you're having a good day.

Hi moose I have the same problem with Dh in that he doesn't really "get it" either. Tries to be understanding but then in debate exclaims that he is much more ill than i am! He too thinks that an early night will solve everything. So infuriating. I'm not making quite so much sence at the moment and I'm not managing to say what I mean very well. Words...grammer...thought processes...blah blah blah. yy to brain fog! Hopefully I will be much more coherent next time.

I hope you are managing to rest up and enjoy your weekend...and I hope you are being well looked after. Take care and I'll talk to you soon

Hello all.

I have been away for the weekend. It was fabby. I am feeling much more energetic, so maybe the ad's are the way forward.
I still have pelvic, hip and limb pain, sore skin and various other bits. So there is other stuff going on too.

I'm sorry to hear your mum has been through some stuff Moose, glad you got your peace of mind back about the day you weren't so well though. It's horrible having worries like that.

Did you get rest over the weekend?

Hello Tigerseye - how are you doing?

Hi Celestial, has the good spell continued? Hope so!!!

Hi Tree. I'm so pleased you had a lovely weekend. Doesn't it feel great to have energy and life? I've been having a really good week but have the feeling that things are gonna start to take a downward spiral. Heavy eyes, irritable, tired, sore throat (again), skin is a mess...all the usual stuff. You mentioned AD's. Is it amytriptoline you are on? The reason I as is because I'm goung to GP today and didn't know whether i should broach this subject of AD's. I'm definately gonna speak about sleeping tablets of some sort and wonder if amytriptoline would have same effect at regulating my sleep.

Moose,Magso, Tiger and everyone. I hope you are all ok. Thinking of you all

Hi All

I was diagnosed with ME 2 years ago, life as been sh*t since, my ex hubby couldnt cope with the diagnosis and it seemed to be the final nail in the coffin for our 17ears and 2 beautiful together. Im currently off sick after survivng since June last year (when i left ex) with no serious flare up. Sure the pain is there daily, and i get tired, but not crashing like i am now.

Hope you dont mind me commenting but as far as AD go duloxetine work to help neuropathic pain but is a AD, as for amitriptyline that is what i take when i have crashed, i foudn i needed quite high doses to beat the pain and help sleep, but then couldnt work the following day because i was too groggy. Therefore i get by day to day with paracetamol/brufen and sometimes codeine for pain, and zopiclone to help me sleep. i find the zopiclone doesnt leave me so muzzy headed.

ME as stolen my life away from me and i hate the fact i have it, however having a label helps others understand(sometimes) although i get asked alot if im tired. arent all single mums with a full time job no family support(my family are 100 miles away and ex wont let me take children home so i stay here to be near kids) and two kids tired.........its not tired is it its unexplainable.

oh im sorry for ranting.

good luck to you all and keep up the good work with your pacing.

Hi Belle Yours is such a story and I really feel for you with all that you are going through and all you have been through. How shitty to have to go through this on your own with no family around and no support. Do you have friends that help out or support you? How on earth do you cope with everything?

I feel resentful too at my wasted life and find it hard to accept my diagnosis.I have probably been ill with this since my early 20's but somehow managed to keep going until October last year when I "crashed". I've been off work since. But before the crash life was always a balancing act when I had to prioritise everything I did in my life at the expence of other things ie family, friends etc

I also find that even with a "label" people still dont understand the whole complete M.E experience. I was at lunch the other day with some friends. We were talking about my illness and even though I explained in great detail about the symptoms and the effects and consequences of them one of my friends said "yeah but isn't it it just the same as depression"? It's this kind of ignorance that we're up against time and time again.

Thanks for your advice on the AD's. My GP has refused to give me sleeping tablets. Thinks I should try to find alternative ways of regulating my sleep like, for example, going for a walk before bedtime. What?? Yeah thanks for that what part of I'm exhausted and sore and "zombified" do you not understand? Yeah going for a walk will do the trick! Sort my M.E right out! And in my exasperation I forgot to bring up the subject of AD's. Bloomin' memory!

I hope your crash is very short lived and I hope things improve for you really soon.I only joined this thread a couple of weeks ago but it has already been a great support to me. And I know that I'm finally talking to others who are going through or have experienced the exact same feelings and frustrations that I'm going through. It's such a relief and suddenly I don't feel so isolated anymore. I hope you will find this too

Hi Celestialstarlight, and all,

im not sure if it helps but i downloaded info on ME and took it to my GP, even with my diagnosis from the CFS clinic one GP in my surgery is still a bit sceptical. I too work for the NHS, thankfully my shift days are over, the thought of a night shift sends shudders down my spine, granted when im not crashing im usually pacing floor boards all night because i cant sleep, but thats due to every other symptom my ME gives me on a daily basis, night sweats IBS hence stomach craps insomnia pain oh the list is endless.........

im not really sure where i am going with this like i have said before im lucky that i crash every few months, with each crash lasting between 2-8 weeks. the rest of the time i can get on with things. Today i have had a better day im still up and dressed and bathed and its 6pm! Granted im heading off to bed soon. The kids are with their dad this week and i have had to ask if he will have them next week, much as i dont wan t him to i need to put them 1st, and been here when im crashing isnt good for them or me......the cheeky as took housekeeping off me for the kids thou for shopping for next week. i wonder how much will be spent on the kids food or will go towards the weekly shop for him his g/friend and her baby.......oh and the puppy he bought the kids when i left...........

right best stop im been bitter, keep smiling and take one day at a time thats my best advice, if you need to sleep or rest all day today tomorrow might be a bit better.

:)

Hi there, I felt I needed to add something to this thread. Firstly, I haven't read all of it, but the bits I have read, my thoughts go out to you all. ME/CFS/PVFS is such a horrible illness. I was diagnosed in 2009 after some horrid symptoms. I was struggling at the time with a 1 and 2 year old and my husband was working away. In the end he had to give up his job and move back home, otherwise I really don't know what would have happened. My story though, does have a positive outcome and thats what I wanted to share with you all. If I can help even one of you just a little bit, that would be fab. After several months of struggling on and getting worse, I read about something called 'Reverse Therapy' on the web. It was a lightbulb moment for me. The theory comes from the school of 'mindbody' medicine that emphasises the importance of emotions on our health. I will not attempt to explain any further than this as I won't do it justice, but if you google the topic and a man called Dr John Eaton you will find lots more information. I was lucky enough to find a reverse therapist fairly near to me who was a bit of a life saver. She herself had ME and fibromyalgia for many years but had used this method herself and was now recovered. I had 4 sessions of therapy over a few months (as its is quite expensive) but it worked and I no longer am a CFS sufferer. It may not be everyone's cup of tea because of the philosophies behind it but I firmly believe that this is what led to my recovery. I hope this is helpful to at least some of you.
Best wishes

Hi Leo I've investigated into the reverse therapy sessions that you mentioned and they do look good. Even if it doesn't "cure" my M.E, i'm sure it would help with all the other baggage cluttering up my head. At £80 a session though it's very expensive. I notice that Dr Eaton has a book on this so I might buy it just to have a look at his concept.

Thanks for letting us know about this

just thought i would pop in and say hi. Have been struggling just recently. Got some blood tests back from rheumatologist and I have a +ve ANA,RF,Scl 70,CK so he is now saying that i have some sort of systemic sclerosis(auto immune disease) which accounts for why i feel sooooooo crap. I dont know if i feel better for getting a diagnosis. Now the doc wants to put me on plaquenil before he starts on immunosuppressants.

Oh Alypaly! it must be a mixture of relief (treatment can be targetted properly) and shock for you. I do hope the treatment helps qickly. Sending you a hug!!