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!

know how you feel. i am just in the throwa of relapesing into CFS/ME after having had chronic parvo 10 years ago. my symptoms are slowly coming back.

sore skin
sore joints/ligaments
dog tired. cant hold hairdrier up to dry hair in one go. takes 4 times.
feel weepy too
also very sore gritty eyes

God, yes! trying to style your hair! bloody hard going.

just been out for an interview for a job today and i have come home and now i need to lie down ....and my body hurts so much and my arms are so weak. i feel really unwell but dont look really unwell to strangers.#

everything is an effort. i feel like my whole body is attacking itself.

:( aly. How did the interview go? I find that that type of stress brings on the symptoms very fast. I hope you rest enough to feel better soon.

alypaly you sound worn out and ground down. Much sympathy from me on this front. I too feel done in, have come to bed to try get warm. I need a hot choc with cream on, and 12 hours sleep. Then a slow day. We won't speak of the reality...

ou must tell us how the interview went, congratulations on getting one in times like these. ANything exciting? Hope so

I simply can't hold a hair dryer up to dry my hair - I just assumed it was because I don't work out and have good muscles It all slots into place now.

Still haven't been for bloods, or flu jab, or some other mega important stuff I need to crack on with.

In answer alypaly, I don't think either had slapped cheek tbh, although I suspect that strep throat thingie where your skin peels off. Bizarre business, but dd1 shed a layer of her fingers and toes. Most odd.

Achey wrists and hips. Tis truly a bonkers condition.

meshcornwall.org/

Hello,

I hope it is OK to put my thoughts in here.I have 2 people in my family with M.E that has spanned now over 30 years.I have put the above website on as there is a large amount of help in it and the patron is the most amazingly kind and conscientious Doctor,Professor Pinching.We are lucky here in this area to have such a caring and knowledgeable consultant.I am not qualified to give a diagnosis except from living daily with the outcomes and symptoms presented by my family for so long.On that basis I would think you have M.E. but as wisely said here by others,all else must be excluded first and you may have to fight for a definitive diagnosis.This is important as you may need to have that if circumstances change and you need a safety net.The one thing that always helps is pacing.Do you know how to do that?It is like using a battery only so far or it will empty out completely,best to keep its level fairly stable by not expending energies too fast and furious.We always say that "pay back" is never far away so choosing what you expend your finite energies on has to be a priority to maintain balance.If I can be of further help don't hesitate to ask.

Thank you mhp :)

I find pacing very difficult to do. Not sure if others find it OK or not.

hi solo interview went really well but she only had a full time position and she really wanted me which was nice. The hours were way too much considering the way i feel too. I dont find interviews stressul now...too long in the tooth i guess. I find the thought of no job soon more stressful. hours were 8.30am til 6.30pm with an hours drive each way. Way too long a day.

ooh treedelivery the weakness is not lack of exercise its this damned post viral ME/CFS.
Went to my Gp again today(never seem to be away from the place) broke down crying again(feel as if i am cracking up) took a list with me of all my symptoms and she said it is definitely looking like ME/CFS or some other auto immune problem like RA or similar. Got to have more immune tests and she is trying to bring my appt forward whilst i am so flared up.

mentalhelf how have they coped with 30 years of this hell. I would have thrown myself over a bridge after that long.

I am having to pace myself. bit of ironiong,sit down,clean the house ...sit down...lie down,interview,lie down.

This is soooo not me. i hate this. there has got to be a treatment for this. does anyone feel worse in the winter months or have a cyclical pattern to this.

I believe this ME can happen ater any viral or bacterial illness but other than a massive sore throat in sept the only serious viral thing i had was parvo virus which i believe has been responsible for alot of my on going problems.

solo she has kept my details as someone might be leaving a part time position soon

Excellent aly )

What ages are we all ladies? I'll be 47 in March.

I had gladular fever as a 5 year old, but I also had some vaccinations for my job which I'm convinced cranked this up to motorway speed.

Well done you aly And well done for not taking the ft hours and exploding in a haze of exhaustion. Were you tempted, or are the symptoms way to bad right now?

You must have really impressed them, well done again. Hope they get in touch soon.
I'm sorry you ahd such a hard gp appointment though, it's so hard to pour out all this stuff isn't it. SO hard.
I read that certain antidepressants can help [ssr's?] and painkillers. Someone up the thread recommended a supplement too. I think alternative therapies would really help some symptoms. But as to a magic bullet, it seems not
We have very similar symptoms alypaly.

I'm 35 btw, 2 girls [6 and 2]. I work shifts, 2 x 12.25 hours a week, nights.days.weekends, whatever.

Ache today, had a sleepy spell earlier but stayed awake. will I regret this later? DD will wake from nap soon so I daren't sleep now. My arms ache and bloody wrists again. Sore throat, blah blah blah. Haven't the energy to do anything but this, yet pacing says I should do a bit, rest, do a bit, rest.

Is it wrong to fully flop out and be inert? Maybe that makes it worse? I haven't the motivation or energy to do anything but lie here nad tap away, so the idea of housework etc is awful.

I'll read about your site mhp. Thanks for popping by. You are right, I need to chase this diagnosis down. Whatever it is, because really at this stage I could have anything. It could be a simple depression, or a thyroid or something. Sadly I haven't the energy when I have time, because when I have time I am zonked.

I would say I'm 80% well after suffering from fibro since I was 27 ish. Changed lifestyle, changed husband etc.

I was very poorly yet I had to work and get on with it and this also brought on terrible depression and anxiety.

I think anxiety is def. connected. If someone really winds me up and upsets me I seem to get really shakey and can feel the bad blood flowing through my back.

What I would say is avoid any alternative therapy, god knows how much I read and paid and all a complete waste.

Treedelivery - Doing shifts up upsetting your sleep pattern will not help, I def think with having the children I have to get out of bed and have a good sleep routine. Your constantly on the poor sleep wheel when messing with sleep. Daylight/sun def has a poss effect too.

Im not convinced its brought on by a pre-illness I am of the opinion its personality type and something to do with the fight and flight chemicals in hte body. Even so I can remember having a sort of virus from a young age and having chicken pox in early 20's and this could trigger the release of something.

Hello to all being impacted by this issue again,

Yes it is vitally important to address a diagnosis and not leave it.It helps self esteem to know what is wrong,there is nothing worse than the continual stress of not knowing and that ironically has a very detrimental effect on those with M.E. in particular!Any emotion whether happy or sad is a drain on a person (quote from Professor Pinching)with M.E.and the family members because as with other chronic long term illness there is more than one victim.When one knows what one is dealing with it has a beneficial ripple effect on daily life.eg. Explanations/letters if you need time off work,school and college studies,safety net benefits,family relationships and many other aspects where this illness can (if allowed!)have negative affects on day to day functioning.Once there is a diagnosis it actually is a relief and aids progress forward for all those involved.We have adapted and call it "management of the illness" to enable the maximum level of quality of life for the sufferer and family.These 2 areas cannot be separated and things work far better when everyone is involved and educated. I will add one last thing.This illness must never be underestimated,we have been homeless,estranged from family,lost a business and one person was narrowly saved from suicide.Having said that,we are all stronger,wiser and happier with no materialistic desires which are so pointless.We have learned through all this to value each other,love each other and never take anything for granted.It is an enormously powerful strength to be given and I am thankful for it.Pacing is vital,I cannot stress that enough whilst no cure is out there as yet. Possibly if we had known then all the information now available our extremes would not have happened.Anything I can help with please do contact me.

GraceAwayInAManger - you said something earlier about cortisol, which reminded me of this interview where they say that the virus that's recently been found in ME patients is activated by cortisol

thanks solo and tree. i was too tired to take the FT hours but i was seriously tempted.

with regard to age,i am was a very active 54 year old but i was 44 when i first got this after chronic slapped cheek.

tree, my GP said not to sleep during the day, but to do something then rest and do at least one pleasurable thing each day. she also said to make a list and tic things off so tat i feel as though i have achieved something.

yes it was difficult breaking down in front of her. This illness makes you feel like a failure because most of the blood work comes back normal and it makes you feel like a fraud. some of mine has come back and liver enzymes are elevated so she is going to look into that.

bacon i think you are dead right about anxiety and depression. I had a nervous brakdown when i was 33(12 months after DS2 ) but related to sexual abuse but i have been on and off antidepressants for 20 years.the consultant that gave me treatment 10 years ago has done alot of research into CFS and ME and autoimmune diseases and viruses and the majority of his patients have had some nasty bug at some time that has made them really poorly. apparently it all goes into your mast cells and replicates when you are at a low ebb.

mentalhelf i think you are right about pacing as i used to burn myself out and never sit still. recently this bloody illness has made me sit down.lie down. fall down.

we should all get together for a curry!!!!!wereabouts are you all

I am sure both of those affect you immune system in a destructive way. They say stress is a killer!!!!! also i have been a single mum since boys were 5 and 1.5 and they are now 22 and 18. so i know what stress is like.

Treedelivery .....you sound as tired as me.

soory my message got a bit messed up the i am sure.......bit should have carried on in paargraph for bacon!!!!!!!!

hi theButterfly...you were young when it all started....what caused yours. Do you know?

I love curry but that would be an expensive night out. Im in south manchester

Alypaly, we have had similar experiences in some ways. I had a breakdown when I was 24, also through an entire range of abuse from the first husband; not great times...I've been on and off ad's for years, but I refuse to take them nowadays and have only had them for the ME symptoms around 8/9 years ago.

I was very active too...an hour and 30 mins gym work 4 times a week, ran around like a looney. Single Mum, worked ft. To tell you the truth, I don't know how I did it.

I'm in Kent/London and also love curry...doesn't soud like we're going to have one as a group though does it? :(

sounds like a fun thing to do (though expensive) TBE.
I dread long trips in case I can't get back :(

thebutterflyeffect .......strange you should mention lack of sleep. I have been a virtual insomniac for 20 years. On and of sleeping tablets.believe it or not when i had my breakdown...i did not sleep for 6 weeks at all. I was monitored and i didnt even catnap. I felt so ill. Eventually i was given 50 mg temazepam under supervision froma psych and i slept. In the morning the nurses at my hospital clapped when i came down to breakfast.

i was so stressed i couldnt sleep,i wasnt tired really i was just cooking on adrenalin all the time. fast heart rate,flushing,it was horrible.

solo its funny you mention injections, i never even thought of those. I had hep B earlier this year as i started work in a nursing home and my symptoms have got worse this year. hmmmmm