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!

Hi again Celestial, Im not down really... I am trying to stay upbeat and keep going,but i must admit i could just curl up on my bed right now..
Dont think my condition is hereditary although my mum had bullous pemphigus when she got older. That is an AI disease and my eldest son developed pompholyx last year which has thankfully cleared up.

They dont know the cause but i have had pneumonia 3 timesin last 10 years and chronic parvo virus (slapped cheek)after catching it from my son 10 years ago. When my parvo was at its worst i was diagnosed with ME?CFS and it still feels almost the same except for the affects on my heart(which showed up with tests) and bloating after eating which is slow bowel motility due to nerve damage with this sclerosis.

I am still going to play badminton on sunday and sod the consequences. I cannot give it up despite what the advice has been. Its quality odf life that is important to me and sport plays a massive part. Although i havent felt well enough to ski this year. ( also no money!!!!!!!!)

Your employer sounds really helpful

Oh Alypaly you are having a tough time. Its so hard to cope with all the physical symptoms - and then theres the uncertainty and the shock to deal with. Sending more hugs!! I struggle to understand where my health and fitness ( which was excellent only a few years back) has gone!! I have always had a seasonal element to my health - hense taking vit D3. Can you try it ( if it is not contraindicated)?

AI disorders ( as a mixed bunch) do seem to run in families. Star hypnosis sounds interesting. I wondered about buying a tape/dvd to see if it helps - so will be interested inyour findings. I was turned down for CBT on the grounds that it would not change the situation I am in (poor health and challenging parenting ). I guess its a chicken and egg problem !!
Solo, tree and everyone else wishing you all a better weekend.

I have very familiar aching shins and lower back, arms and writst. Damn it. I really have not got time to go down at the moment. Fuckity fuck.

I also missed a GP appointment and forgot an appointment for dd1. This was in the last fortnight. Here we go again. Fuckity.

Aly - I don't blame you for wanting to keep your sport!

Tree hope you are wrong (and avoid a crash)!! Sending a gentle hug anyway.
I forgot an appointment this week too.- I have no idea why I just got mixed up! Hope I havent missed anything else.

Thanks magso. It's a funny business when you hope your aching bones etca re down to a cold I'm wishing a cold on myself! Have major aches now, and the girls are under weather too so feeling rather worried about next few days!

Sorry this thread seems a bit old but did you get a diagnosis?

I have similar and have diagnosed (after years of being thought depressed) with fibromyalgia.

There are treatments and there are things you can do to improve quality of life, if this is what you have.

Sorry I am being a div. I only saw the old part of the thread. Will read the later parts and will be quiet....

What an amazing thread. Its like my last 8 years of hurdles and frustrations, but spoken about by others. I wish I had come across this when I was struggling on, one heavy leg in front of the other, thinking that this is just what life was like with kids, work etc.

Hi Missing I thought that this was normal life too. Struggling on exhausted married, kids, work, pain, exhaustion, work, exhaustion, pain, stress, depression, pain, exhaustion, tears,on and on and on for 20 years, until Crash. Then I found this thread and every word made complete and utter sence. Everything clicked.

You have come to the right place and you are most definately not alone!!

Tree Hope you are ok. Sending you positive energy

I have made lots of changes and now feel great (in comparison to how I was before). People think I am slow and dont do much, but it works for me. It has taken me years to make all these changes, each one came about slowly, but if anyone suffering can make some of these, you may find they work for you too. I used to lie on the floor and wonder how I was going to get back up to sort out the kids, the house, work etc, but you just do.

I am quite sure this is teaching granny to suck eggs, but if there is one thing here that you can do, that makes life easier, then this was useful.

I got a diagnosis of fibromyalgia, after tests ruling everything else out, and the FM making arthritis in my hands really bad. If I didnt have the arthritis then I doubt I would have got so far with the consultants, but cos they had a visible thing to work on it made them test me lots.

I changed to working 4 short days, so finish at 3 every day. Obviously not everyone can do this. I doubt I could work til 5 now if I wanted to, yet I used to work till 9 regularly and 7pm was my usual end time.

I changed to annualised hours, so I get all the school holidays off. I do extra flexi hours in order to avoid the paycut that this would bring, but I would take the paycut, cos I think this is the single most effective thing I have done. As you come towards a holiday I start to feel awful, but knowing that I have a holiday coming keeps me going and I gather my strength back up on the holidays. I have to be careful not to plan too much for the holidays (sorry kids) otherwise I am knackered again, but I try to make it one day with trips etc, then one "homeday" where I can be lazy. Luckily climbing frame, trampoline, dog etc make sure the kids keep their activity levels up and dont get bored.

I gave up shopping, if I cant get it on the internet I go without. My food shop arrives each saturday, and the postman and I know each other so well as I just order whatever we need from ebay etc. I am pretty sure I save money this way as I google for discounts before I order anything.

I changed to permanent working at home, I am lucky that my job allows this, and this is the 2nd most effective change. I only go to the office once a month now. When I go in, I am shocked how tired out I am the next day.

I got someone to do my cleaning. someone to cut my grass. someone to do my ironing. it means we are skint but just thinking about doing all that now, makes me tired. If I can get someone else to do something, and can afford it, I do.

I finally learned to pace myself. Toughest thing ever. I can leave things. Before I had to get everything done. Immediately. This is still a hard one.

A lot of it is the sleep, I have found that things like Paul McKenna cds can help you go into a deep sleep, not always but sometimes, and relearning how to sleep is a massive deal. Hot baths before bed help too.

Sorry for the massive post. these changes have changed everything for me. I hope something there is useful for someone.

Hello all and welcome to MissingMySleep

Am and at just how tired and ill I feel. Have bit of temp, sore throat, aching ankles and bones, skin is screaming.....you know the score. My ankles really hurt, very odd.

Have had about 4hrs sleep since midday yesterday, and a really busy night. Now facing into the house and the bedtime hours and oh dear me. Dc's are in bonkers mood and have been tearing around all evening. DH has just discovered an expensive problem with his car...blah blah blah

Woe is me, sorry to be such a bore. Have tonnes of college stuff to do too. Damn it.

MssingMySleep - it's amazing when you read something that totally speaks to you isn't it? Sorry you went through those hard times without mn, but hopefully you had good support at home? Sounds like you have built a great routine and life management plan around you, which I one day dream of...

Who can believe the pric of a cleaner? and yet clearly they need to earn a decent living and not earn a pittance. Still though, be noce if I could get some sort of subsidised cleaner...

Sorry you are poorly Tree. Hope you got a better night. I get burning itchy skin - drives me mad . Is you skin like when you burn your tongue? Has anyone found something that helps? Cool skin cream only helps for minutes if at all. You have a busy life tree so it must be very hard when you need to drop a gear or two.
I am continuing with my gentle pilates class. Am in awe of the other ladies ( all older than me).
Missing my sleep, some useful advice and experiences. It set me thinking about what I would do if money was plentiful. Some chores I really hate. because they are so tiring - I get a sense of dread when people are coming ( meetings for ds etc). A friend helps me with tidying (my pet hate) - she is brilliant at it and can make clutter look artful (!)- and I help with other things (asignments/ letters). Trouble is there are not too many people who enjoy chores to do a skills swop! The old fashioned homehelp my grannny and mother got when they came out of hospital/ after childbirth would be so useful for poorly mothers today.

Thank you for the welcomes. Oh dear tree, it does sound like you are right in it at the mo.

Support at home, har har har, my family think I am a whinger or lazy. If I ever say anything my single sister will tell me how tired she is (from clubbing) and the other sister (with kids but not working) will tell me how she often naps all day when the kids are at school. So best I don't say anything. My husband is in the army and thinks its all in my head. I swear not a day goes by when he doesn't say "how can you be tired", or "why are you always tired"... I wave the fibromyalgia leaflets at him angrily and he just mumbles off out of my way. My mum just worries, and tries to keep the I told you so's to herself, as she has spent all my working life telling me I was working too hard. Guess she was right. She cant do anything to help cos she is poorly (blood disease) and is full time carer for my disabled brother. Sorry this wasnt meant to be a moan, but it feels great .

My husband is in the army, he just got back in November after (another) 7 months in afghanistan, and he was upset to find out that my family hadn't been helping me out as planned instead its me that helps them all out. At least now he believes me (he is away most of the time) when I say I do have to do it all myself. He always thought my mum and sisters would be round helping me out.

sorry moan over and now guilt stepping in.....

anyway, re cleaners etc, we cant afford it really, I started after I had a back injury with a car crash and couldn't hoover for months, it was supposed to be temporary, but that was 13 years ago. I will go without anything rather than give it up, cos she irons, cleans, helps me with the hard work things I cant get round to. Definitely recommend getting what help you can. I don't drink, smoke, buy clothes, go out, go on holiday, but its worth it to remove the manual work where I can. I guess some people love shoes or clothes or going out for meals, but this is my vice ha ha

I know it sounds a bit posh, a bit extravagent, but if you can get someone maybe once a fortnight, and trial it out for a while, see if it makes a difference, one worth the money.

magso am trying co-enzyme Q as a friend off another thread advised it. Keep up with the pilates,it keep mind body and soul sane.
tree has your doc tried you on atarax for the itchy skin. Whereabouts on your body is the itchyness.

I know its a weird question but Im trying to piece all our problems together as i am interested in research.
Q.. did any of you suffer from anxiety or depression in your younger years?
Or any serious viral/bacterial illnesses.

anxiety all my life, even came out with stress related excema as a baby, when my mum got stressed

depression, not in younger years, but PND and the fibromylgia came at the same time

Ali in answer to your question - No to depression (except reactive) but I do have low self esteem and confidence so tend to work overhard to compensate. I would be mortified if thought lazy or careless so find taking a relaxed attitude or leaving work promptly difficult.

Yes to illness but the triggar for my PVFS was IMHO more the last straw that pushed me over the edge as I had been struggling for years with episodes of flu/ me like symptoms on and off. Frankly I suspect getting pneumonia was the result not the cause of my PVFS. I was very ill as a 2 year old so I wonder??
I have started to read a book about back pain and a putative pshychogenic cause (TMS) - where the overworked brain causes physical muscle and tendon anomalies - in some people. I have not read enough to be convinced yet though.

Alypaly I was diagnosed with PND following DS1 which was 18 years ago now. I was 21years old then. Funnily enough it has been since I became a mum that I started to suffer with back ache and exhaustion too. Prior to that I was fine though. Had a really emotionally abusive dad though who was abnormally strict and also mentally unwell which caused a lot of anxiety and unhappiness but not "depression". It was only in later years that he we discoverd he had CFS/M.E (although that is no excuse for his atrocious behaviour). Incidentally both my brother and I have CFS/M.E too. We don't know if it's hereditery but certainly I think there is a genetic predisposition.

Viruses wise just the usual coughs and colds and chicken pox. Had a really bad flu when I was 15 though. It was awful and I remember it well!

Hope this helps. Would be interested to know more about your research

i knoe its always said in a glib fashion,"but stress(i believe) is a killer.

When we are stressed and anxious we over produce adrenalin and then that causes our systems to go on overload.It makes blood vessels dilate,muscles expand.Ligaments get tighter. We get poor sleep due to our systems being on the alert. Although we are all knackered,sleep is intermittent and of poor quality.

Also if you are depressed your tolerance of pain becomes poor. So we may perceive our pain as worse because we are feeling low. I know that when i am very happy(seldom ...unfortunately) the pain doesnt seem as bad....maybe adrenalin has something to do with all this fibromyalgia,CFS,ME

A pysch that i used to see when i suffered from really bad depression(after DS1 and talking about earlier child abuse) said that anxiety states cause a fight,flight reaction in our bodies and in normal circumstances there would be an end result that would shut the adrenalin off. But when you are anxious or depressed there is no end scenario to turn the adrenalin off IYGWIM. Its like being chased by a lion (lots of adrenalin) escaping (and then adrenalin dies down and you relax). We dont relax

I agree with the stress thing Aly. Stress has been a major part of my life this last 5 years. It is only now that I am learning to control it. Deep relaxation is hugely beneficial and I find the hypnosis cds great to take time out and relax deep down to the core. Shaitsu massage is fabulous too for deep relaxation. I've been lucky enough to recieve this free through a community programme funded my local Authority but knowing the benefits of it I would gladly and willingly pay. I can't recommend deep relaxation enough and I think this is helping me on many levels Stress really is a "killer"

i think i have been surrounded by stress and anxiety all my life ,abused by brother from 8-12.....father was an alcoholic.....my dear departed mum was always on valium or lorazepam as she was trying to cope with everything. Then i had a breakdown at 33 ,6 months after having DS1 and then all the abuse issues came back. I have had such poor sleep for 20 years and im sure its all taking its toll. I have always tried to be upbeat and always enjoyed my sport and skiing,badminton,tennis and i hate what this illness is doing to me.
celestial you are sooo lucky to receive things like that from local authority.I would willingly pay.

Aly I recieve this through a stress management programme for people dealing with long term illnesses. You should check at your GP surgery to see if there is anything in your area. It is run by a volunatry group who successfully managed to get funding from the L.A. So nothing to do with NHS which makes it more personal and tailored to individual needs. It was my Health visitor who put me in touch with them

Hello everyone

I came across this thread a few days ago, and it has got me thinking. I have spent years backwards and forwards to the doctors, having various blood tests, check ups etc, but nothing conclusive found (other than an overactive thyroid when DS2 was born, which cleared on it's own and is now normal).

I am getting gradually better, but have been constantly tired for years, and excessively tired during both pregnancies (even midwife said more then is normal). Some days, I can hardly get out of bed;

When I'm tired, I ache. My joints and muscles ache to the point I have to take painkillers. I have been tested to arthritis etc, but blood tests were clear, and it comes and goes. My wrists, in particular, are so stiff sometimes, I can hardly hold a pen.

In the last 4-5 years, I have developed a bad gluten intolerance, but test negative for coeliac. If I eat/drink anything with gluten, I am doubled up with pain for 24 hours with other IBS symptoms. I have also developed some sort of alcohol intolerance, and if I drink even one glass of wine, I ache all down my arms and legs for 5 days or more;

I have had weird liver results, which tend towards Gilbert Syndrome, but which then revert to normal on the next test;

I have painful glands, in my neck etc, but also all round my tummy. These make me panic, because my dad died of Bowel Cancer, and I am a bit nervous of any pain around my abdomen, but three GPs have checked and have all said it is just swollen glands that come up when I have a virus.

Every day, I have something - today it is the swollen glands and achy legs. My husband says that I am the most tired person he has ever met.

To be honest, I am used to living like this, and it is getting better, but having read this thread, I just started to wonder whether there is some link?

hi rickymummy........welcome......... its funny you mention the alcohol intolerance. It now makes me feel really unwell and makes me ache more. Not that i was an alcoholic but 2 glasses of white wine make me feel dreadful.

whats a Gilbert syndrome

Hi aypaly

Gilbert's syndrome is a liver condition - very common, not even a real syndrome, but makes you go yellow if you are tired/rundown/ill/drink alcohol.