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!

Hey magso :) I've looked for this thread several times, but couldn't find it, then found it by accident! I couldn't remember what it was called.

I have been having hell with my leg pain; but now, I'm getting the same type of pain in my hands and toes...I don't know what it is, but it is something I've had before. I've had hot spots too, which was all new and went, but is now back. I'm exhausted all the time too...nothing new, but it seems more extreme.

When do you expect to see the specialist? any idea at all?

Oh I lost the thread too! Yes have the long awaited soon.
Hope the leg pain settles down - are you able to sleep? Have you found anything that helps?
I have trouble with my knees fingers toes and ankles, with the knees/ankles getting quite hot. It is a lot better than it has been although I seem to have lost finger precision hense the poor typing! writing is really painful and illegible but I think that is due to muscles not working not joint trouble. I am struggling at work ( I only work 1 day a week - takes me the rest of the week to recover) the general exhaustion is not quite as bad but all the little things ( like forgetting words and fingers and eyes and voice not co-operating) make me feel useless at work.

Yes, I get most of that too...I may have to retturn to work in January and I have no idea how I will cope with it in any way. Am not looking forward to that at all :(

Solo are you thinking of returning to your original workplace? I seem to remember the hours were verylong and rest impossible.

hello, I think I need to join you. I've read this thread before and wondered but I couldn't trace problems to an infection. Also I didn't have joint or other pain. Unfortunately I now have more severe problems so look like I should be here . I am currently reading about mitochondrial dysfunction and trying to do anything that might help with that. Has anyone here received B12 injections and if so did they help you?

Yes magso that's right :( I have to make an appointment with the job centre and find out if I can be paid jobseekers allowance (even though I'm technically still employed) for a final 12 months...but I keep putting off picking up the phone because I'm scared they'll say no, or that work will say no and then I'll be thrown into it all. ^ I feel really anxious about it all and I'm really not^ the anxious type normally. It's possibly all tied up with the childcare issues/costs etc tied in with the hours I'll be out of the house...

Hi nonemus. No to B12 injections.

What are your problems? (if you want to say). I don't know anything about mitochondrial dysfunction; does it link in with ME/CFS?

fatigue mainly, started to get pains in my legs if I walk to the shops and back. Also feel cold badly but thyroid tests in the normal range. Improved dramatically when I went gluten free but worsened after (what I think was) an infection earlier this year.

Mitochondial dysfunction could explain ME, although not why the dysfunction occurs. Google Sarah Myhill and you'll find more information. Mitochondrial dysfunction occurs with a lot of illnesses and B12 is said to help as it's a powerful antioxidant. Unfortunately B12 isn't readily absorbed by the body but some people do take tablets on the principle that if you take 1000 times the amount you need a bit gets through. I'm currently trying various supplements that have been mentioned as possibly beneficial, but not B12 as I couldn't find the tablets.

Holland & Barrett sell it and it's on special atm; might be worth trying it?

I haven't the energy or concentration to read anything in any depth right now, but will attempt to at some time :)

ME/CFS is so complex...a nightmare :(

Um I was worried about absorbtion of B12 because the coctail of drugs to combat the corticosteroids ( for lung problem) upset my system very badly and I could not eat for a while. So I bought sublingual B12 (absorbed more directly via the blood vessels under the tongue.) However I know you should not self medicate on B12 so perhaps I should keep quiet on that one. I was very unwell at the time. I just wish my GP would do all the thinking and tests for me!!. I am hoping to get referral on to an ME clinic if no other cause can be found but diet/ vits etc does not seem to be part of NHS philosphopy.

I'm not sure that's true re the diet etc, as I was on a trial with Barts years ago...I found it too hard to stick to though and came out of it, so there might be something that can be looked at within the NHS to do with diet.

OOh will make enquiries if I get that far!

Blimey, couldn't find this thread.

First of all usingapseudonym, I am so sorry there was no-one around to support you when you posted. It sounds like you are having a tough time of it.

We've all been there and do understand exactly what you are saying. Please don't be so hard on yourself, we all have to make compromises in our life somewhere because of this horrible illness and it comes with mountains of guilt off the back of that. Try to remember, we all have our good days and bad days and sometimes even good weeks/months and I'm a firm believer that what little ones need the most is being with you, not constant stimulation. From having you close by she will be a content and secure child who will make the most of her learning opportunities as and when they arise. As a teacher, I'm sure you know that they all find their own way and time to learn new things and just because you are needing to rest now, doesn't mean she won't absolutely fly when she is older.

Do what you can, rest when you need to and take each day as it comes. I know its not easy, but it just has to be that way until you start to feel you can do a bit more and then hopefully each step will be easier than the last.

I will come back and see if you get this, if not, I'll pm it to you. I know how horriby alone this can make you feel and you aren't alone, we are all here to support each other - albeit sporadically just recently.

If it helps, I went through one of my worst ME crises from November 2010 to May 2011. I was literally wiped out 24/7 and struggled to do the basics. I also have a dd who is currently 2.7 and also ds1 who is 9 and has ASD and ds2 who is 7 and felt just the same guilt about not doing enough with them etc. BUT around the middle of May I gradually started to notice I was feeling a bit better and have gradually been getting stronger ever since.

I gained a lot of weight over the period of my crisis, but have lost most of it again now, mainly through clean eating (avoiding, refined sugar, processed foods, additives as far as possible). When I felt strong enough I started walking to increase my fitness and gradually built it up day by day, as and when I felt up to it. To start with it was a struggle just getting to the boys' school across the road, but I took it from there - tiny steps day by day. I'm now feeling the best I have in a long time and have even managed to do the 30 day shred workout dvd - which is pretty major - well for me anyway.

Imho its important to not try and make yourself get stronger though. I feel you should be led by your body, you need to listen to what its telling you it needs, as trying to build up exercise etc while you are still totally exhausted and foggy etc will just use up your valuable energy resources and ultimately make you worse. You will know when the time is right to do a little more and then you need to take it very steady and take care not to overtire or push yourself too far. Its a delicate balancing act that can be difficult to get right.

I do think this horrible illness seems to hit people in different ways. For me, it tends to be huge crises over several months and then I might not have one for a year or so. My longest gap between crises was several years, but thinking back, I now recognise that I had several lesser crises during that time that I didn't recognise at the time. In my case, I think my crises are triggered by a combination of stress and illness and this last one was triggered by my eldest son going through his autism assessment and me fighting to try and get him supported at school as well as having back to back viruses from the beginning of Autumn right through Christmas.

I am scared that things will start to go downhill again now the autumn is here and winter is on the way, as I am generally better across the summer months anyway, but am hoping that by doing everything I can to maintain and support my health and fitness while I can /I will be able to at least minimise a crisis, if/when it happens.

Again, I am so sorry there wasn't anyone here for you when you posted back in August and I hope things have eased a bit for you now.

lol, completely missed the last page of posts!

I was tested for B12 earlier this year and mine was 'within acceptable levels for a vegetarian' - whatever that means.

Magso, I had terrible finger, ankle, knee, hip and bizarrely lower rib pain during my crisis, but its improved a lot now. I still get the rib and ankle pain and almost constant parasthesia in my left hand and forearm and lower left leg and foot, but its improved massively. I'm fortunate in being at home rather than working though, as it's given me time to work on my fitness verrrry slowly and I think building my muscles has helped take some of the strain off my joints.

What hasn't improved is my cognitive stuff. Similar to you, word recall, fingers not listening to brain (typing the wrong word, constantly mixing up letters and missing endings of words etc) vision issues - although apparently nothing physically wrong with my eyes etc.

I'm booked in to see my old Neuro next week and am very nervous about relating the whole story to her. I'm thinking they will most likely want to re-do my brain scans, as they showed white matter lesions last time and I assume they'll want to compare then and now. From what I can make out, based on the last letter they sent to my GP (around 6 years ago) the white matter lesions are related to destruction of myelin and affect the movement of messages within the brain, so I assume that's why my brain struggles to talk to my extremeties and eyes and while I struggle with word retrieval. There was a suggestion at the time that they might have been caused my lupus, but that was ruled out following blood tests and my symptoms don't comfortably fit a dx of lupus really.

I have absolutely no idea whether or not they are going to just confirm ME or suggest something else and am currently an odd mix of ridiculously nervous about what they are going to do/say and relieved that its finally being looked into.

moosemama I do hope the neuro is able to give you something helpful. I am not quite sure what is helpful - but the limbo of not knowing is certainly unhelpful!! I have worries about seeing the endochronolgist - so many of the main symptoms are my normal now and I could easily give a very false impression by failing to mention them.

The last 3 winters have seen regressions for me too althought the overall direction has been to very slow improvement over a year. Add to that the new school for ds which he is struggling with ( major meltdown today so feeling very hopeless at parenting) so I am a little worried by winter too.
I have realised that basically I am an optomist who is learning to be a realist. I wonder if that is a common trait!!

I know what you mean Magso. I was just thinking last night when my left eyelid was refusing to open - again (something that happens all the time, but I no longer really notice or worry about) that I really should sit and write down everything I can think of and do a copy for me and one for the Neuro. I hope she won't think I'm a hypochondriac if I explain to her that I've lived with it for so long now that its hard to tell what's normal anymore, so I thought I'd include pretty much everything and she can ignore what isn't helpful, iyswim.

I'm taking dh with me as back-up, as he witnessed my worst and longest weird neuro episodes and has one videoed on his phone, but in truth, he's hopeless at hospital appointments himself and just as likely to forget to mention something as I am.

I have always been a pessimist, but am learning/trying to be an optomist these days, as I'm finding it helps to focus on something positive to aim for. When I am going through a bad time with it though, I do try for realist, because I know I'm likely to slip really far down if I allow myself to be negative.

Don't feel bad about parenting, I know what its like and its often beyond the control of a mere human mother, let alone one with our issues, to field every possible meltdown every single day. My ds has been through meltdowns, tears, night terrors, sleep walking and talking and school refusal so far this year and we're only 3 weeks in! I think this, along with Christmas and the end of the Summer term are the hardest parts of the school year for both ourselves and our dcs, but now I see that pattern, I'm learning that as these things go in cycles, it helps a little to remember that none of them lasts forever, even if I am bound to see them again on the next turn.

Good luck for your appointment - let us know how it goes - and I hope things improve for your ds and school as well.

ha yes I think we have had all of those ( except the sleepwalking - he seems to have stopped that at last!) I always find the fullblown wobblies so difficult to handle - ds is so big and strong when in full throttle. Today I physically could not manage - ds ran out in the road blindly - thank goodness it was a driver who knew ds and the danger it represented. I am sure i parent less well when most unwell myself!
I hope your appointment goes well. Good idea to take your husband with you. I'll let you know how I get on.

Ds1 has never sleptwalked before, so it was a bit of a surprise for us. He actually came downstairs, sat himself at 'his place' at the kitchen table and started rambling on about Super Mario! Then he went to the toilet, his wobbly tooth came out and he went back to bed. He had absolutely no recollection of it in the morning and didn't believe us about his tooth until he checked for himself in the mirror.

Gosh, I'm really sorry, but I cannot read the long posts :( I just can't take it in.

link to sarah myhill on B12 www.drmyhill.co.uk/wiki/B12_-_rationale_for_using_vitamin_B12_in_CFS

I function on pre-emptive rest. If I am sitting down I try to keep my feet up, when I can I lie down (typing this on my netbook in bed), if I need to think I try to do less physically.

Somehow (brain fog?) I couldn't find B12 in H&B when stocking up on a lot of other supplements. If you buy a magazine called healthy for men or something there is a voucher to get L-carnitine for 3.24. Magazine costs 99p. Q10 (like B12 an antioxidant ) is also on offer. I was given some Q10 so am trying it.

Diet/supplements won't find the cause, I'm hoping they will have a long term impact on symptoms.

Thank you for the link Nonemus. I had to ask for the B12 - health stores always overwhealm me!
I have found your suggestion of not trying to do physical and mental things at once very helpful.

Solo I know what you mean about the long posts.

I am lucky enough to have an Ipad with home wifi so can read posts in bed. It has made a big difference. I know they say you should only sleep in bed not read but I need to rest flat out!

Usinggapspeudoname how are you? Imissed your post too. I find I get a dip around 3pm - and thats without young children to care for! It must be so hard with littleones.

Can I ask everyone whether your blood pressure is high or low? Mine is always normal/low - and that seems peculiar.

Well mine has always tended to be lowish/normal.
However apparently it went very high whilst i was in surgery (lung biopsy) and I arrested! I do not know what this means ( it might just be me) but I seem to react too much to some adrenaline based medications like the local the dentist usually uses.

Sorry about the long posts. I get so little time online these days that I tend to try and squash it all in.

Will try to break things up a bit more in future.

seems wierd to me that I have the blood pressure of an athlete when I am too tired to do much.
Therefore I wondered if it was common in ME/CFS.