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!

(((AlyPaly)))

I think, on the whole, take the diagnosis, make it your own and feel better. Better as in vindicated, allowed to be ill, in a treatment zone where people are listened too, consulted, assessed and followed up.

I'm sorry for the shock and fear though, and all the emotions you must have. We are all here for listening if you need us

I am crashing. Have had bit of runs type thing and then BAM - aching long bones [bonkers lower leg and lower arm pain], skin and throat. I was just thinking a few days ago that the ad's had cracked it, I could hardly remember what the pain was like.
That'll teach me
Sore skin, headache and sore throat - for a nicely rounded off set of symptoms Darn it!

Aly, ((more hugs)) I have to agree with Tree, take this as an opportunity to feel vindicated not only to everyone else, but also to yourself - I think everyoe on here knows how this sort of illness can make you both question and lay blame and guilt on yourself.

As magso said, it must have been a huge shock, but also a relief to finally be heard and validated.

I hope they can come up with a really good treatment plan for you, so you're able to start seeing some improvement really soon.

Take care of yourself x

Tree, we have been the house of plague with a stomach bug as well. Actually this time it was me and dh, not the dcs that got it and dh actually took a day off work with it yesterday - which is virtually unheard of.

Ours was nausea, really painful stomach cramps with really loud grumbly guts, diarrhoea, headache, sore throat and horrible achyness. I also had the stingy skin and rather fetching bright red cheeks. On day three today and just starting to feel a bit better - although the school run was a killer this afternoon.

Mum has had it too, so it seems she kindly brought it home from hospital with her after her hip replacement.

Hopefully, being on the ADs will mean you'll recover faster this time and you'll really much more quickly.

Sorry to hear that Moose, am really glad the dc's escaped.

Good point, maybe it will bugger off more quickly now I'm on this stuff

Hope your mum is ok btw. x

Thanks Tree.

She's ok now. She bad soft tissue and tendon/ligament response to the op initially - again (same happened with her knee) lots of swelling and a lot of seriously bad pain, way above the norm for that particular op. Her surgeon thinks she may have Fibromyalgia!

Think positive - it WILL bugger off more quickly now.

thanks everyone ,for the hugs....much needed. sorry to hear you are all still fdeeling rubbish. is anyone else getting any help from immunologists or rheumatologists or are you all just trying to battle on.

was supposed to start on this new treatment today but have had stomach pain and also the red cheeks since sunday like you moose. didnt want to start it as it has some horrible side effects.
nurse in rheumatology department has said i need a course of steroids today to help my energy levels.
if this plaquenil doesnt work i have got to go on stronger immunosuppressants so i am a bit worried that this is a slippery slope downhill.

i am supposed to be starting a new job in 2 weeks so i need to be fit. i have been out of work for 18mths and i so need this job.

I've kind of lost this thread a bit. My own ME is jumping all over me atm. I'm thoroughly exhausted, tearful and I've had enough!

Oh blimey. Many hugs needed, hot water bottles for sore limbs and a good stock of throat pastilles and eye drops.

Solo We all need to bob in and out as the symptoms ebb and flow - it's the way of things isn't it. I assume is someone hasn't been around they are either well, zooming [whilst pacing ] about cleaning and seeing friends...or ill, unable to face posting, typing, talking or interacting. I know which I prefer, but this is our reality. Fecking sucks. I hope it ebbs off soon, and you feel the energy flowing back.

Sore fingers, typing inaccurate and irritating. Pelvis creaks and back aches and throat aches and headaches and jaw aches and skin aches.
But I am able to get about as usual, moving at normal speed and not too bad on stairs and school run. So we'll see. The weather is damp and foggy, just looking out the window makes me ache. Bought new shoes for work, some crocs shoes that the trust will let us wear [all clogs banned ] so hopefully they might help with fatigue. Do hope so, as I can ill afford £38.

alypaly - I don't know what to suggest, I can totally see your concerns. I rally want for you to be ok for your job though, maybe the meds would help with that. Then you could even try cut down or cut out. Could you use them just to get you there, then reassess?

Just popping in to see how everyone is. I am not too bad just at the moment, ridiculously tired as always, but managing to function on a basic level.

Things aren't going too well with ds1 and school though so the stress levels are starting to rise and we all know what that leads to.

Solo, hope you are feeling a bit better now.

I'm sorry to hear that Moose Poor ds1. It's a rollercoaster isn't it?

Hi there, Haven't read all the thread on here but from the symptoms you describe sound like you need to get checked out for MS. These are classic symptoms. I am having some very similar experiences too, over the last 2 years.I also suffer fatigue, sore skin/ nerve pain in my face, neck, shoulder and arm. I haven't had any weakness in my limbs yet. I lost the sight in my right eye for about 6 weeks, its fine now. I saw a neurologist yesterday and I have a brain scan in 3 weeks time.
Really get this checked out!

Hi all. Apologies for being awol. I've been ok and just like Moose managing to function on a basic level. But I feel that my mood is a little more lifted than it has been of late and I wonder if that has anything to do with the improvement in the weather or the improvement in my overall fatigue and pain. I had a burst of energy a few weeks back but it proved to be just that... a burst. Things are more sustained now but I know I need to be very careful and not to overdo things.

I have a meeting with my boss today to discuss ways in which they would be able to facilitate my return to work. I actually feel for the first time since October that going back to work could be a viable option. I'm hoping that if this "good spell" continues that I could be phasing back to work in April, so fingers crossed.

Sorry to read that things haven't been good for you Solo I hope things start to improve really soon.

Alypaly Hope you are ok on your new medicine regime. Must have been a real shock to you to have your diagnosis yet at the same time a relief that you have been diagnosed. I hope you are feeling better soon too.

Tree Moose Magso Hope you are all well and hello to Monkey So about your MS. Good luck with your scan in a few weeks. Please come back and let us know how you get on

Monkeysmum, I've already been checked for MS, but don't have it. The two diseases are very very similar. One is taken seriously, the other isn't IME.

Hi all, and hello to monkeysmum. Hope the scan is ok, do pop by anytime and tell us how it's going.

Solo, good to hear from you. How goes it?

Alypaly, wondering how you are doing too?

Celestial - how did the meeting go?

Am staying awake after nights, so a cool 36 hrs with about 4 hours broken on off sleep here and there. Should make for a depressing interesting weekend.

I was holding a friends 4 month old yesterday and it was exhausting :(

Hi all! I'm not doing too badly. I struggle to function as usual but am enjoying the arrival of sunshine and feel I am coping better than say a year ago!! I am continuing with once a week gentle pilates. After the first week I have learnt to take it very slowly.
I have just filled in the census form and wondered how to classify everyones health. I plumped for the middle one (fair) - it made me think of fair weather and made me feel optomistic!!

hello tree.....thanks for asking about things,you too celestial,in fact everyone ......
hydroxychloroquine making me feel crap. Constant diarrhoea and i have gone really pale which i dont like. The hospital has told me that it will take up to 3 months before it helps....if it does. It may not be the right meds

Symptoms are no better and feet and hand are on fire especially at night. eyes are still very sore.Rolling around the bed all night with the pain. Having nerve tests soon, for periphal neuropathy.
Im trying to manage tho as i dont want to give up. trying to feel more positive about things despite feeling in pain and tired all the time.

Does anyone know what a urine ph of 2 means. Its really acidic. I believe the norm is between 4-9ph

Celestial...i think the diagnosis has really frightened me,more so because i have always been so fit up until this disease started. I am still trying to play badminton but it really takes it out of me.

Tried to forget about everything yesterday as it was my **21st birthday(ha ha ) wish it was.

Ive put 'fair' too magso.

Oh alypaly that doesn't sound very nice. I'm sorry, you must be pissed off. You do very well to be able to play badminton.

magso the weather is a real help isn't it?

Solo you sound fed up?

I think we are all struggling but determined to ty let the weather and changing season perk us up. I'm finding having to try so hard to feel better is pretty exhausting actually. If that makes sense.

I guess I'm going through a 'buck yourself up' stage - and we all know where that ends

do you all find your problems are seasonal or cyclical. Do you reckon better weather helps. My symptoms used to get worse in september and then improve by march. This is the first year they havent got better by march. Hope it will improve soon for everyone.

I am fed up mostly :( It was my birthday on Monday and I'm more than 2x 21...very depressing!

Feeling very tired, sore etc and fed up of the Dc's being ill and giving me their germs!

belated happy birthday solo. Im more than 2 x21 too. sorry you are so fed up. Do you tend to catch stuff off the DC's.

feel like 4 x 21 at the mo grr

Alypaly It sounds as though you are going through a really tough time just now. The pain you are going through sounds terrible and to go through this for months without knowing whether your meds will even help must be so hard on many levels!

Regarding a cyclical nature of the illness...I'm beginning to notice a pattern. I think I tend to be better during spring and summer. Not great but better. My brother on the other had spent 15 years in bed with the illness regardless of the seasons so i think for some it may have no influence whereas others may benefit from the lighter/warmer days. However Although there is a strong history of M.E on my paternal side, there is also a strong history of S.A.D on my maternal side, which makes me think that I'm fucked I might have both.

Happy Belated Birthday Wishes Solo. I'm so sorry you are feeling so crap and fed up just now. I really do hope this passes quickly for you. What a fecking illness this is!

Hi Celestial........yeah they have put me on the plaquenil to alter the way the disease works and if that doesnt work its methotrexate,steroids and cyclosporins, which are really high powered drugs with horrendous side effects. They are used to knock out your immune system after organ transplants.

My boyfriend has always said this illness comes in cycles. He says it always comes back about 3 weeks after our summer holiday. He's right. Mind you so does rheumatoid arthritis which i have now got a positive blood result for. How can i go from being so fit to this... i love my badminton and i dont want to slow down

Oh Aly You sound so down...and I don't blame you. What you are going through is horrendous. It really is. Is your condition hereditary like other autoimmune illnesses? One thing is for sure...it's not your fault!

For some of us it doesn't matter that we exercise and try to take care of ourselves. Illness doesn't care who it affects. We have it or we don't and although it is soooo hard and almost impossible we must try and not let illness control us or define who we are.

I am seriously thinking about hypnosis to see if it will help me with my pain and exhaustion. To see if it will reduce my stress and hopefully train my brain to cope with it all. It may come to nothing but I'm gonna give it a try. My work are also going to liase with the onsite psychology team to see if they would be able to offer CBT (because my local authority don't provide CBT funding for ME sufferers on the NHS). I'll try anything to find mechanisms of coping with all the pain and fatigue and other crap I have to deal with.

Are you able to recieve pain management from your local hospital anaesthetic department. If you are in so much pain your GP should be refer you.