Could I have [mild] ME?

[Christmastreedelivery]

Hello.

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

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

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

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

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

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

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

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

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

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

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

What do you think?

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

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

I have low blood pressure as well. I seems to run in my family, as Mum, one of my sisters and my grandmother all had it too.

My grandmother's doctor told her that in his opinion low blood pressure wasn't taken seriously enough by the medical profession, but could be just as much a problem to general health as high blood pressure. Not sure why though and unfortunately Grandma is no longer around to ask.

Its a known issue in ME/CFS, usually referred to as Orthostatic Stress, Orthostatic Hypotension or POTs.

A few links about it:

Orthostatic Stress impairs CFS

Hummingbird Foundation for ME discusses it under symptoms.

Some basic info here.

Just been reading this thread on the UK MECFS Forum though and am and all at once! This sort of case is precisely why I've kept myself away for the doctors for so many years.

My blood pressure is always good. Bit of a surprise as almost my entire family have bp issues.

Yes I think poor blood pressure control is implicated in ME/CFS etc - I think it is why I find standing more difficult than walking, and sitting very unrestful! I will try to find the references.

thanks, looks like it is one of the symptoms. I'm getting out in the sun as much as possible at the moment to boost vitamin D3 levels. I've just come across something called pyrroloquinoline quinone that may help damaged mitochondria - it's common in fermented soy beans (natto?), broad beans, potatoes, cabbage, carrot, green pepper and green tea.

Actually Magso, you've rung a bell there for me...It's more difficult to stay still a lot of the time for me too, even though I can't actually exercise properly.

So now I have a dx and have been referred onto the localCFS clinic.

At least you have something to work with now Magso. Not good to have the dx, iyswim, but validation for you at least.

Was it the endocrinologist that gave you the dx? Did they do any more tests first, or go by your history?

Yes it was the endocrinologist the inteersted specialist in our area. Asked lots of questions, physical exam( heart lungs), blood and urine tests. As long as lab tests ( which have been done before) come back as expected I will get a dx of CFS/ME. I was loaned a booklet aimed at the newly diagnosed. It mentioned a few things I had told him about but did not know were symptoms. I would have preferred them to find something fixable but at least I have a dx. He has written to my gp to suggest trying a very low dose of amytriptaline which in low dose acts ( he said) to normalise neurotransmittor levels that are low in autonomic disfunction ( CFS) which cause some of the signs/ symptoms. I have mixed feelings.
Feel mostly relief that I have a label that may help with access to services and help. ( It is very likely we will loose respite for ds as I am no longer critically ill and cuts are needed- but I might be able to better argue for continued respite).
Hope your appointment goes well.

SOLO I cannot exersize either. I can walk although not fast or uphill! I have a pair of trainers that wobble and oddly instead of making it harder it helps me not loose my ballance! I bought them to try to improove my exersize intolerance!

Magso, I undertstand the mixed feelings totally, I am the same, still hoping that they are going to say 'oh its X and we can do X to fit that' but at the same time knowing that realistically there's a stronger chance that I'm either going to get further confirmation of the CFS or nothing concrete.

I hope you can get long-term respite sorted now. Surely they must realise that a chronic illness needs longer-term support than an acute one, but I know how you always have to fight for these things, which is the last thing someone with ME needs to be doing.

My Mum takes low does amitryptiline for Fibromyalgia and it has given her some relief - she was in two minds as to whether or not to take it, but is glad she gave it a go.

I feel odd at the moment. I feel like I've been waiting ages for someone to take me seriously and actually listen to what I have to say, but now the appointment is imminent I'm the best I've been in a long time and am worried they're going to think I'm a fraud.

Posting a second post, so my first didn't get too big.

I am having a bad day today. I was bullied into going out to a friend's birthday do last night. I didn't want to go because I knew we wouldn't be home before 2am at the earliest and I was scared of how much that would knock me, but the birthday boy (who's our oldest and dearest friend) pointed out I had missed every party he's had since I was pregnant with ds1 (who is now 9 years old).

So I went, made sure I sat in the quietest room, only had one drink, then stuck with water for the rest of the night and kept things low key and calm BUT we didn't get home until 3.00 am in the end, as it was a long drive there and back.

Slept until lunchtime, but have been so exhausted I haven't moved off the sofa since, am struggling to string a sentence together and all my joints are screaming. All this lovely weather and I'm stuck in my north-facing living room for the weekend.

Finding it very and am also that it only takes one very low key night out to set me right back after working so hard to build up my strength. I know I'll have to rest for a good few days now to recover. Feels like a long way to fall from being able to work out for the last month or so.

Sorry you are worn out after going to a party. It isso hard for others to understand! I lost afriend when I turned down an invite it was not that I did not want to go but that I could not go and continue to function adequately as mum the next day!
It does seem odd to have a diagnosis.

That lady on the utube thing had a very similar history to me even down to being hospitalised with breathing difficulties and pericarditis symptoms. Although I was dxwith pneumonia from a ct scan the extreme breathlessness had developed over a period of months. I wonder if it was trying to carry on that got me so I'll iyswim.

Nonemus i drink green tea so it's good it has something useful in it.

moosemamma don't stay in that living room, lie out in the sun on a towel or sun lounger. D3 is important and you need to build your stores before the winter. Unfortunately it's probably not only the night out but also the previous exercise that has knocked you out.

nonemus, I think its the combination of both that's wiped me out really. I know the exercise was doing me the power of good. I was feeling so strong compared to the previous few months and being really careful with the exercise listening to my body etc, but despite being almost an insomniac, lack of decent overnight rest and long hours socialising etc always seems to knock me for six.

Am feeling a little better today, but not much. Dh and the dcs are going to do some gardening this afternoon, so I will get a camping chair out and soak up some rays at the same time.

I've been thinking and I wouldn't be surprised if ME was actually ruled out with this round of investigations. I don't think I fit the pattern well enough - or maybe I'm just kidding myself. It just seems unlikely that they would dx me when I have long periods (sometimes years) between bad episodes and the rest of the time its all pretty low-grade stuff.

I definitely have trouble recovering after exertion, so the mitochondria thing seems to apply, but different types of exertion seem to affect me in vastly different ways.

Sounds a bit odd, but I am sure the high strength omega oils I started taking back at the end of March were the catalyst for me starting to improve. I noticed some effect straight away, but by early May there was a big difference and by the end of May I was no longer having my 'odd neuro episodes'. Am wondering if its related to myelin in some way?

I have wondered if in the past before CT scans and so on, people with severe CFS/ME which relasped were diagnosed with MS or other better known things. The symptoms can be so similar.

I think you may well be right there Magso.

I know my own symptoms have seemed like those of relapsing remitting MS over time, but I honestly don't think that's what I have. I also think if my lesions had looked like they were of the MS type (which I believe is fairly distinctive) it would have been investigated at the time.

The thing is, can you have ME that relapses/remits? I think the fact that I have gone years in between with only relatively minor symptoms would make it unlikely that I would get a dx.

chronic fatigue is a symptom, not a diagnosis. We all have a problem with fatigue but the causes may be quite different. Moosemamma omega 3 is important for mitochondria. I can't offhand remember why but I did find references to it. Will post later if I find it again. Whatever the cause of the fatigue doing things that support mitochondria is likely to help symptoms. ME that relapses/remits is common.

Personally I suspect my own problems originate in the gut. Going gluten free made most difference to me and recently using up some near end date probiotic yoghurts seemed to make me feel a bit better.

Its hard to know what to call something that as yet is not fully understood! personally I need to understand in order to accept and do my best to get well. The extreme malaise, neurological, orthostatic, heart, lung, muscle, gut, sensory atonomic immunological and co-ordination troubles ( did I forget something?) all point to something not working at a very basic universal level. So eating well for mitochondrial health seems a good hypothesis!!

I asked about diet to get well(er). My specialist said to eat healthilly, no skipping meals, and drink at least 2 litres a day.

Ok - found various references including the one below. It seems to be something to do with permeability of the cell membrane that permits increased production of energy in the cells. I don't fully understand it but there is a logical reason why you could feel better with more fish oil in your diet.

"Diet rich in omega-3 PUFA reverses the age-associated membrane omega-3:omega-6 PUFA imbalance, and dysfunctional Ca2+ metabolism, facilitating increased efficiency of mitochondrial energy production and improved tolerance of ischemia and reperfusion."

sorry about random smiley, don't know how it got there

Can I ask? Do others have very heavy almost immobile limbs on waking? Once up and about things improve somwhat , but first thing I really struggle with everything.

I've had that on occasion...right at the beginning of my illness, it took me 10 minutes (or so it seemed) to put the bedside lamp on and just recently...now, I just make myself do it somehow :(

Thanks nonemus and magso. I always do this just before I see the docs - start backpeddling and saying 'its all right, I'm ok really, I'll just carry on as before' etc.

I do believe that cleaning up my diet has also had a huge impact on how I feel. I pretty much only eat fresh, healthy food these days. I occasionally allow myself a small ice-lolly or something, but that's very few and far between. Before I ate fairly well-ish, but binged on chocolate and things in the evenings. I am veggie and I was also neglecting to eat things like seeds, nuts and lentils, which I now get a healthy daily dose of. I haven't touched chocolate or any other rubbish really since 14 June 2011!

I don't have fish oil, because of being veggie, but the stuff I'm on is considered by many to be better, because its sourced from algae, so is from the lowest point in the foodchain and doesn't contain the heavy metal contaminants that can be a problem with fish oil.

It also has exactly the right balance of the different types of omegas. Opti-3 Omega Oil. It has made a huge difference to ds1 (who has ASD) as well.

Magso, even at my best I still have that.

I can never just get up out of bed. I have to wake up, change position onto lying on my back (I'm a side sleeper) then lie there for between 10 and 20 minutes before sitting up, first agains the headboard and eventually on the edge of the bed, waiting a couple of minutes and then standing.

If I don't do that I tend to end up falling back onto the bed again as soon as I'm up.

Walking down the stairs is horrid every single morning, because I feel like my legs are made of lead and won't do what they're told. The joints in my feet are always really painful coming downstairs as well. Usually, by the time I've walked through the living room and reached the kitchen things have loosened up and I'm ok.

That said, its a lot better than it used to be. A few months back, there was no way I could lift dd from her cot and carry her downstairs, but now, as long as I'm careful I can manage it. Just in time for her not to need me to do it anymore! I also had regular days where I had to go downstairs on my bottom!