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!

Rickymummy, how did your appointment go?

Ali, sorry to hear your new job start hasn't been going well. Hope you get to the bottom of the high blood pressure.

I have just crashed again after a fortnight of nothing but stress, it was like watching a car crash happening in slow motion - I knew it was coming but was helpless to stop it.

Dh was decidedly unsympathetic and very bad tempered about it, until this morning when I was really ill. I must have worried him, because he let me stay in bed while he organised the boys and did the school run.

Unfortunately its not likely to improve much over the next few weeks with all three dcs at home for the holidays and lots of stress re ds1's SEN. I have so much complicated paperwork and evidence to plough through and I can't even read a thread on here without losing my place every other minute.

I am just trying to rest when and where I can. Have been sofa bound all day today, apart from dragging myself across the road to fetch the boys this afternoon. Fortunately, they have no homework that needs to be done before the end of the holidays, so I just gave them a yoghurt and a drink each and slunk back onto the sofa. Its not good, but tis the best I can manage today.

AliSheedy - essential fatty acids help me a bit, they stop the brain fog being so bad.

Here's a picture of what some ME patients fingerprints look like
fingerprints does anyone here have these lines on their fingertips?

Hi all

Not a good weekend. Its ds1's birthday today and I had to make him a pokemon birthday cake yesterday. Unfortunately, every time I stood up - I fainted. Managed to get through it, but it took me the whole day and I had to sit down the whole time, although I really wanted to be lying down - which is what I'm doing now.

Its head collapsed, then its ear fell of - without a doubt - its the worst cake I've ever done.

Fortunately, ds saw the funny side and said it just looked like it had been in a tough pokemon battle. Bless him.

Haven't a clue why I kept fainting. Am thinking probably anaemia and possibly low blood pressure as I keep seeing 'stars' even when I'm sitting down.

No more fainting today, but have tried to stay off my feet as much as possible. Still having trouble sitting up though.

The other worrying thing is the parasthesia in my left hand/arm and foot/lower which doesn't seem to want to shift, even when I'm lying down.

I know I should go to the GP, but I can't face being fobbed off and told its just anxiety.

hi moose sorry you are feeling so bad. go to A and E if you are fainting sooo much.

Thanks aly. The fainting has stopped now, thankfully. I'm just completely wiped out and having some visual problems, plus all the usual parasthesia and bizarrely have completely lost my appetite.

Typically dh had an interview across the city this afternoon, so I'm on my own with all three dcs until late.

How are you doing, have the side effects lessened at all for you at all?

Hello All
Have just read OP and wanted to say that I have been told by GP that I might have Chronic Fatigue Syndrome.Have already got Vestibular Migraine and am about what the Gp has said.Have no idea what to do.I had to leave work as a nurse as vertigo and shakes were affecting my work.
Will go back back later to read whole thread.

What I meant to say OP[was you sound like me or I sound like you!]

Moose Glad to hear your fainting has stopped. You should still go to see your GP though as it sounds as though your blood pressure is a bit low or indeed high what with your fainting episodes and visual disturbances. So please make that appointment anyway...even if the fainting has stopped.

CFSkate Yip, I've got the CFS fingerprints Good link though. Thanks

Hi Dooby You've come to the right place

Quick update. I started back at work yesterday on a phased return. It was really quiet on the ward (for once) and I was supernumery, so I didn't have any patients and just helped to cover meal breaks, help with drugs etc. So a nice gentle return. I stayed for 5 hours and although it was a very gentle return I was drained afterwards. During my shift I was dizzy and thought I was going to pass out but it was extremely warm in the unit and everyone was complaining of the heat! It was really hard trying to keep up with conversation and cope with all the external stimulii such as beeping monitors and hospital lighting.

After my shift my legs were so achy and heavy I could hardly put one leg in front of the other to walk back to my car. I managed to get back home and then slumped. Totally drained Why is this so hard? Bloody M.E.

Anyway I'm not back til next Sunday and only for another half shift. So we'll see how it goes. Fingers crossed I'll cope better next time

moosemama - when you say visual problems, do you mean blurring/focus?
About standing up, on the CFS forums, they talk a lot about POTS, orthostatic intolerance, dysautonomia and autonomic dysfunction. I think this is all the same kind of thing. I wonder if it is something like that.

I saw another forum link to a blog that Dr Snyderman is doing a survey about whether people with ME/CFS are the only sick people in their families, or whether their relatives have lots of other illnesses and conditions too. He wants to hear even if you don't have any sick relatives. treatingxmrv.blogspot.com/2011/04/informal-family-survey.html

hi CFSKate, blurring, going in and out of focus and dark shadows across my vision - not floaters, more like big clouds.

I just did a bit of reading and youtubing on orthostatic intolerance and it does sound similar. I really struggle with standing after I've been in bed all night, I have to do a gradual process for getting up - wake up - lie propped for a while, sit up for a while, sit on the edge of he bed, stand and then I can't get down the stairs without hanging onto the rail and leaning on the wall. I've also had weird 'episodes' after eating paritcularly big meals all my adult life (I start to feel faint, have palpitations, my temp shoots up and I can't speak properly - I basically all but faint and have to lie down and allow myself to stay semi-conscious until it passes). Another thing is that I am hopelessly oversensitive to alcohol - one glass is enough for me to be red faced and really drunk. A lot of it seems to fit - although I am not a regular fainter, in fact I 've rarely ever fainted - this weekend was exceptional. I am really hoping that its not the start of something new.

I have come across The Hummingbird Foundation for ME which is really informative. Unfortunately and I suppose typically, I am struggling to read and take it in properly at the moment though.

What I have found really interesting is this that they state that ME is diagnosable by the identification of scientifically measurable post-encephalitic damage to the brain stem and brain lesions similar to those found in ME patients.

This is really significant for me, because after my MRI in 2005, I was told I had a number of brain lesions (which at the time they thought might be indicative of Lupus) and evidence of recent encephalitis (which I couldn't explain, other than what I had thought was a particularly bad migraine which had me bed bound for over half of my two week summer holiday a few weeks beforehand). The consultant sent me a letter to say Lupus had been ruled out and as the migraine treatment (topiramate) had worked, (which is what I was seeing her for - she was a migraine specialist) they were discharging me.

How can I find out more about these brain anomalies do you think? Would my GP have been sent copies of the reports?

I don't think I can legitimately do that survey, as officially I only have a dx of PVFS, dating back to 1999. Shame, as we have a fair bit of auto-immune type stuff going on right through my Mum's side of the family and my Dad died young of a type of a highly aggressive prostate cancer which I have since found out can also be related to familial auto-immune problems.

i get that weird paresthesia in my hands and feet too moose...they are sending me for nerve fibre neuropathy tests.
celestial......its horrible going back to work after a long period off. You feel as if you have lost track and have to get up to speed which is really stressful. I have just started a new job on the 4th april for NHS and am coming home with a tight chest and feeling really stressed. I am hoping it will get less stressful afetr the easter mad rush otherwise i think my blood pressure will stay high permenantly.

Have had to stop my plaquenil meds due to side effects and they were just starting to help the joint pain after 4 weeks. The hospital failed to tell me that they caused photosensitivity and i went out in the sun at the weekend.
I look like a bloody tomato. and my face burns sooooo much.
Dont know what they are going to put me on instead. Its a real shame as the tablets were just starting to help me get down the stairs in the morning and i have been able to to fasten my shoes whilst bending for the first time in ages.

moose you are allowed to see the letters from the hospital, in fact whenever i see any hospital docs i always ask to be copied in on the info to GP and other doctors. It is your right to see your medical history.

Alypaly Where are you having your pain. Is it pelvic and sacral by any chance? Have you thought about or tried anaesthetic pain management?

my strange pain is in hands and feet and they burn all night as if i have scalded them. they feel swollen but arent.

my other pain is joint pain in wrists and ankles which is like really bad arthritis especialy in the morning. I have to hold on to the sides of the staircase when i come down stairs. And to think i was playing loads of county badminton 3 times a week. Now it crucifies me.

Oh Aly for you. I also get wrist and hand pain so I can empathise. Mine is very sporadic though and nowhere near as intensive as yours. It's painful as hell when it does happen but luckily it only happens once every few months. Such a terrible pain. I don't know how you cope with it everyday! I really feel for you. I hope they find an alternative to the plaquenil for you soon

thx celestial.
im worried that i might feel worse now i have come off the plaquenil and scared that i might be too knackered to this new job.

Aly, have they not offered you an alternative to the plaquenil? When will you get to see them again? Do you think they'd shift themselves to get something sorted if you called and explained about the new job. I really hope they find a treatment plan that works for you soon.

I get awful ankle and foot pain too. Your description of coming down the stairs could have been describing me. In the mornings I have to lean on one wall and kind of lever myself down the stairs by taking my weight onto the bannister as much as possible - and it still hurts like hell. I get it in both feet, but its been much worse in my right foot since I broke it last year. The physio said she couldn't believe how little mobility I have it in, mainly because after 8 weeks in a air cast the damaged ligaments and tendons had all seized. She said there's no way its should still be this bad after almost a year though. The problem is it just doesn't seem to want to heal now and I am so sick of not being able to walk more than 50 yards without suffering for it. (I used to walk 5 miles a day until the day I broke my foot last year.)

aly re the hand pain I had that really badly, it would wake me up at night and leave me not knowing what to do with myself often, and I found that it came and went with the fatigue, ie it was my first indicator that I had overdone it and the rest of the chronic fatigue symptoms came along the next day

now I have got my fibromylagia more under control the pain is ok (but I cant knock my hands, ie cant knock on doors or anything) and just comes back when I am about to go down having pushed things too far

once they were burning so much I ran them under cold water to see if it helped, ouch ouch that was a terrible idea, never do that!!

Anyway its not much use to you when you are in the pain right now, but it might be worth keeping an eye on it to see if it comes along as you are about to go down with the fatigue. For me when they start hurting I start slowing down and its never got as bad as it used to be since I worked that out.

Sorry to hear you are in so much pain.

I'm still in bed. I'm in lots of pain and feeling exhausted. Dd is downstairs, on her own and 'entertaining herself' Ds has gone out to meet friends...

Solo, sorry to hear you are still so bad. Does anything help with the pain at all? Do you need to go back and ask for some different pain relief?

I had another funny turn just after lunch today - slurred speech and short of breath, odd vision etc. I felt so awful, I lay down on the bed when I took dd up for her nap and woke up almost three hours later. I was so cross with myself and worried about the boys when I woke up, but they had been very sensible and gone downstairs to watch tv.

Am still feeling decidedly odd and dh has gone out for a marathon block of vet appointments with the dogs, so I'm on my own again for tea time.

At the moment I can't even face getting up off the sofa, let alone organising tea for 3 children. Fortunately, I have a butternut and red onion soup I made yesterday which just needs heating up.

I take nothing at all moosemama. Perhaps I should and I have been toying with seeing the GP for a while now, but hate going tbh.

I've been terrible at feeding the Dc's for a while, opting for scrambled eggs and beans on toast far too much...

That's why mine got the soup. They've had far too many 'quick' meals recently as well. Actually, scrambled eggs and beans are very nutritious and quite well balanced - better that than takeaways full of flavourings and msg.

Butternut soup is actually really easy to make, once you can get part the physical peeling and chopping of the squash. You just sweat off some onions, chop a butternut squash and if you have them, a couple of carrots/parsnips/sweet potatoes/some swede. Chuck in some stock and bring it to the boil, then leave to simmer. It only takes about half an hour to cook. Its very sweet so the dcs love it and dh and I add a tonne of black pepper to ours to give it a kick. The best thing is that it's actually nicer on the second night, so I tend to make up a big stock pot that'll do for two days.

Another shortcut is to buy a basic cheese and tomato pizza (gluten free for ds1) then add some cherry tomatoes, courgettes, peppers and onion and extra cheese. My dcs like chunks of pineapple on theirs as well. They think its really special if I buy some mozzarella to add instead of cheddar.

Yet another quickie meal, is pasta (gluten free in our case because of ds1). I buy the tinned or tetra packed chopped tomatoes with herbs, chuck in a clove of garlic and some hastily/roughly chopped red onion, peppers, courgettes and add stack of spinach right at the end so its not overdone and retains some nutrients.

If I'm really bad, they get Heinz Cream of Tomato Soup or Tesco Veggie Hash, with McCain Smiles though.

What sort of pain do you have Solo? Is it joints or muscles?

Solo Moose Sorry to hear you aren't feeling so well just now. for you both. These last few days i've been feeling exhausted. I'm starting to get the Lazy guilt again about housework and cooking. Food wise we've been eating stuff that can cook itself in the oven and requires very little supervision. Easy food.

This afternoon I had taken the dog out for her walk (the absolute extent of my capabilities) and really struggled on the way back. My legs ached and were so heavy that it was painful to keep going . I'm working again this Sunday for a half shift on my phase return and worried that I won't manage it. I'll have to rest all day tomorrow in preparation for it.

Hope you both are feeling better soon.

Hope everyone else is keeping well

Moose, my pain is very deep muscle pain I think ~ almost in the bone if that makes sense? makes me want to hack my legs off actually, though I've had it much worse in the past. My hip joints hurt too and I've had the headache/sore throat combo again which I've not suffered with for some years which was lovely.
Celestial, I'm so with you on the guilt thing re housework. My house is quite literally disgusting now and I can't get the energy together to sort it all out. And it's awful when you know you've got to keep walking to get home isn't it? :(

Keep chins up ladies...

And Moose; thanks for the soup recipes...I have a butternut squash I think...
Dd is hard to feed as she dislikes so many things...tomatoes, peppers, suede, potato, mushroom, onion...is she really my child?!!

Celestial, don't let the guilt win. You are doing the best thing for you and your family by resting.

Hope Sunday goes ok.

Solo, I have had pain in my hips for years now. Its at its worst at night, which means I never get a good nights sleep, even when I'm not in crisis. Hip pain is horrible, it effects everything you do. Is the muscle pain along your long bones? I am just thinking that it sounds similar to fibromyalgia pain and wondering if you need to be seen again to have it checked out?

I find it hard to make quick easy meals as well, ds1 won't eat potato, peas, sweetcorn and anything mushy or pasty - so lentils, chickpeas etc and on top of that he's gluten free. Tis a right pita when I'm not well.

Well, I have only just got out of bed after a truly horrendous night where I felt so ill I had to wake dh up because I was pathetically frightened. I've only got up now because I need to contact someone at the ferry company between 12.20 and 1.30 today to sort out a problem with our summer holiday booking. Think I'll probably be straight back to bed afterwards though.

I hate lying in bed listening to dh and the dcs playing in the garden, it makes me feel so pathetic and really sad that I'm missing out on yet another family weekend.