do i have CFS?

[CharlieCoCo]

sorry its so long but dont want to leave bits out-though prob have.

I have been to the dr who after a process of elimination, cant find a medical reason for my symptoms so have given me some info on CFS and sent me on my way to see if i think i have it
please can people who have it, tell me what you think.
basically, i have always been a fairly tired person in general, on and off anaemic since teen years. about a yr ago i 'crashed' and am constantly exhausted, its really hard to explain (which is another problem i have) but basically it doesnt matter if i sleep for a long or short time, i always wake up exhausted, if i dont have to get up, like on the weekends for eg i can be lying in bed all morning awake. sometimes im too tired to get ready for bed in the evenings too, i am never refreshed.im like in a fog and get brain fog, i cant concentrate much anymore, not even on tele things i love, i get restless and irritated. i am still functional, i am a nanny and it doesn't-yet-affect my job, but i do need (the kids) naptime to happen and i am not bouncing with energy. i am good at walking though and enjoy it though will go into more detail about that below.

for about a yr i have been constantly thirsty and have dry mouth/lips, throat. if i go into a shop for about 10 mins and not drink water i feel dehydrated and can get a headache. chewing gum does help slightly (esp if i feel i cant drink so much for bladder reasons as i already have bladder problems as takes me '4 pees' to empty my bladder). i always need water around me. i also have ibs but there isnt a food trigger, im not sure what sets it off but maybe more stress or for eg before i went to the dr was bit dodgy and if im unsure when can got to loo next or long journey etc may get it.
i have aching joints. one incident i can explain because i fainted a few years ago an since then have ha bad knees so think i went one way and knees wen the other, but every so often or if im walking a long time, my knees and sometime up my thigh becomes bad, a few times i have ended up limping. it seems a bit extreme from fainting. i now have a bad ankle just from no where, it just happened one time without me doing anything to it and now it hurts on and off. my left shoulder and lower back also gets really sore and my hips, especially when i stand get really sore. i also get almost daily headaches.
last yr i had a stressful time and ended up with heart palpitations and needed a 24hr monitor. being the nhs i got this about 3 months after my palpitations stopped so it was fine except apparently my heart beats naturally faster than the average heart. i do sometimes get a random flutter every so often.
i asked to be tested to thyroid as i seem to have a lot of symptoms but it was fine, i always get tested to diabetes, also got tested for caeliacs, full blood count, liver, kidney (had a good dr i think). my iron came back extrmely low, so was my vit d, folic acid, serum etc. so she said so we know why are tired but not y your body is low. gave me iron tablets and vit d/calcium, i dont really feel any different and i did stop taking the vit d as made me nauseaus. anyway we have also had super weather so my levels are now ok so she said to stop taking the pills (though they will prob drop again when weather goes back to being british lol).
she said that there is no medical reason for my symptoms, asked me if i feel depressed (i don't, but i am a naturally emotional person) so she thinks i have mild CFS and have given me some info about it (and no follow up appointment
anyway i have done a little reading and it does add up a little but a the same time i dont want to diagnose myself with something that is so debiliting for so many.
other things that 'match' but i havent really questioned are a sensitivity to noise, my body temperature doesnt quite match others, i can be burning up or freezing cold where the weather doesnt match and i cant control it, i also get really sweaty under my arms, have always assumed it was my deodrants fault. i am not very good at talking, i can speak fine in my head but i end up mumbling or cant pronounce a word properly so end up sounding like an idiot, or i cant get a word out and end up saying um, um a lot. even to close friends or bosses and im very aware of it which makes me self conscious. i have also had people tell me im hard to understand, which i know i am so makes me self conscious more. also, when im reading the the kids i look after, i know the right word but the wrong word might come out, its hard to explain. i also hate talking on the telephone, even to friends, most dont call, but i do have one friend who does occassionally and if she rings and im not expecting it, i panic and dont answer and text back saying sorry i missed it, was busy etc, when looking for jobs and had to call agencies was a nightmare as i hated calling.
i have recently met a guy from online as one day i pushed myself into finding someone and taking a chance. i had a 'good week' and arranged a meet and it went really well and i got on with him and felt good about it and arranged to meet again but by that time i wasnt feeling so great and came with an excuse that i only had so long as had evening plans (i didnt, but needed to go home 'to relax', have met a third time on a day where i had limited time too as had evening plans. i have just had 2 weeks off work and have had a friend or family here for most of it expect tomorrow is my one day before my bosses come back saturday. i need tomorrow by myself to have a day in an empty house by myself (my only day) and whilst i do have a little free time on the weekend, when this guy asked if im free before over next few days, i said im not because i just cant face this task. its making me question whether its me or him (as in if im like this with a new 'relationship', maybe he isnt for me), but since reading about social things being an effort with CFS, i think having this 'label' helps/reassures me, gives me a reason why meeting someone is a task. im like this with friends too, i have always liked my own company and can do most things solo, like cinema and theatre etc, but i am finding myself in a cant be arsed to meet phase. i am spending too many weekends at the cinema on my own or with a mag or lapttop in a coffee shop in silence so i can just relax and not have to deal with anything, i work long hrs so most evenings involve internet and tele, though i do sometimes meet for dinner one evening every so often. i feel like im a freak and feel i need more adult company but i also need me time.
i have been trying to pinpoint a trigger and have remembered the beginning of last year, after never really being ill much before, got really bad gastroenteritis 3 times over a couple of months from my then job, it really weakened my immune system so i ended up picking up every bug and had my first ever few days off work ill. i am wondering if i could have developed CFS from that?
i dont want to diagnose myself with something i dont have and if i do have it i understand how lucky i am, it would be mild and not at all as bad as most peoples, i also am worried if i do have it, with there being no cure, would i just get worst and worst til it doesnt affect my life/job. but at the same time, i need an answer. i need to tell myself (and people though im sure most wont understand) that the reason y im like how i am is for a reason.
sorry this is so long and ramble, thanks for reading if u have made it to the end.

forgot to add under the joint part, that when i get up from sitting for a while, my knees are really stiff and sore and i cant walk properly at first, but not sure if from fainting, is a symptom-or if even normal.

There's a lot there that sounds familiar, so I'll say that it could be, but you do need to be sure it's not something else, it would be bad if it turned out to be something else that you could have got treatment for.

brain fog, not being able to find the words, needing time alone to rest.

Tell me about the walking, you say you're good at that? What about standing still e.g. queueing?

Take a look at page 13/14 of this PDF (the pages are numbered 7/8 on the document itself)

e.g.

^Neurocognitive Impairments
?
Difficulty processing information: slowed thought,
impaired concentration e.g. confusion, disorientation,
cognitive overload, difficulty with making decisions,
slowed speech, acquired or exertional dyslexia
?
Short-term memory loss:
e.g. difficulty remembering what one wanted to say, what one was saying,
retrieving words, recalling information, poor working memory^

It sounds much more like postural orthostatic tachycardia syndrome to me. I can't do links from my phone so you'll have to Google it, but people with this are often misdiagnosed as having CFS (myself included). Being constantly tired, thirsty. lightheaded, brain-fogged, muscle weakness, joint problems, digestive problems, heart palpitations are just some of the many weird and wonderful symptoms.xx

I have similar symptoms but with what sounds like from reading your message more pain - I was diagnosed with Fibromyalgia.

I think there are a lot of illnesses with similar symptoms that overlap. Might be worth doing a bit of searching round CFS websites - you may get a better idea if you have it by seeing how other people are / what research says?

was coming on to suggest POTS but see Rooby beat me to it. A lot of your symptoms sound like DD2. It's an autonomic system problem and can have some odd symptoms, like being inappropriately hot or cold, starting a sentence and forgetting what you were saying, and migraines (which are apparently a stomach issue).

POTS is also linked with Ehlers Danlos/Joint Hypermobility Syndrome which amongst other things can cause joint pain.

You really don?t want a dustbin diagnosis of CFS if you can avoid it. What did your doctor?s process of elimination involve? Has he checked your thyroid function, your cortisol levels, your vitamin B12 and folate, ferritin and your vitamin D? If not, he should have done. If these have been tested, have the results been interpreted correctly?

I always worry when I see posts like yours because I was diagnosed with CFS three times in 2009, twice by hospital consultants and once by my GP. I was told it was pointless doing any more tests and offered anti-depressants. I was looking at having to give up work, I could only manage the stairs at home once a day and I felt as if my life was pretty much over.

When I got copies of my test results it was clear that I actually had a serious iron deficiency, a serious vitamin D deficiency, low B12, adrenal issues and impaired thyroid function, all of which had been ignored by the NHS. All these points have now been dealt with and I am fit and well again.

I was coming on to suggest PoTS too . I have a fab cardiologist who has really helped with the worst of my symptoms.

If you search the document, orthostatic intolerance/POTS is a symptom of ME. Hypermobility seems to be linked to to ME too.

As daisychicken says, there seems to be a lot of overlap. RoobyMyrtle, what differentiates between ME and POTS?

Something about CFS and the OI/POTS subgroup

if it is POTS, then getting an actual diagnosis is vital, as then there are treatments which can help (is a bit trial and error though). As far as I know if the diagnosis ends up as CFS or ME, there's not much gets done, you're just told to rest, and pace activities.

With POTS, the exhaustion seems to be because the body is having to work up to 10 times harder in order to keep upright and functioning; thinking is more difficult which is tiring; and in DDs case, her sleep patterns are totally rubbish, sometimes she'll sleep 18 hours out of 24, sometimes she gets a couple of hours napping a night. So a run of bad nights means wiped out for a few days. It may be to do with the body producing adrenaline inappropriately, as the fight/flight reflex instructions back and forth to the brain are disrupted/too sensitive. I think the exhaustion part of ME/CFS has a different cause, maybe someone else knows more?

Diagnostic criteria for POTS is the heart rate increasing by more than 30 bpm up to 10 minutes of standing, which is simple to test yourself. Official diagnosis needs a tilt table test (where they strap you to a table lying flat, then gradually raise you to standing to see at what point you faint - sounds more brutal than it is ).

POTS UK has a section especially for GPs which is useful as not very many seem to have heard of it.

Good luck with getting to the bottom of it all though.

Thanks for all the replies. i need to have a proper read through of all the links later on as i cant take it in atm, so im not understanding what i am reading .
my dr did a full blood test and tested for anaemia, iron, liver, kidney, serum, folic acid, thyroid (which i thought i had) caeliacs, vitamin d and other ones. my iron and vit d was really low. for example she said normal iron levels should b between 45-220, between 25-45 is considered low and mine was 6. i was on iron tablets for a few months (though i admit i didnt take them everyday) and now my iron is 90 so she said its fine and dont need to take the iron. my vit d was really low too and had a high dose of vit d and calcium then about 2mths of 'normal' dose but they made me nauseous so i didnt take them much, but we have had really sunny weather which she said will help, so my levels are ok now. i still have tablets to take during my periods as she said il lose too much iron if i dont then and i find they help my periods a bit. i had low folic acid and serum and something else too but now apparently everything is ok so "there is no medical reason for my symptoms".
sorry i have probably just repeated myself.
what i mean by walking is, i like to walk, i do race for life each year, if i dont have my oldest charge, so just little one in the buggy i can walk quite far, even fairly far with my eldest. i walk a lot with my job. swimming is 2 miles away and because of nursery run i need the car but on times i dont need to do pick up i choose to do the 2 mile each way walk, also do about 4 miles in total just doing school run without actually doing anything else. it makes me feel like im doing something good, although when i registed at drs beginning of yr the nurse and (different) dr told me walking isnt exercise (he also suggested something hilarious and impossible which is a different topic) anyway, the point is, i can manage walking, it doesnt making me feel worst for it. i would love to jog/run, but my body wont let me .
i havent told my dr about my social and "speech problems" though i have always been aware of it and is not a major problem, i did pick up on it in the info i have been given that its a link and i did get a oh, that makes sense feeling.
i just dont knwo what to think, i feel a bit lost and alone and have no dr follow up. what i have is very mild to most people, my aches my tiredness, etc, i think im finding the thirst the worst, but i just know that what im feeling isnt right, it isnt normal to be like that and the thought of being like this forever. i just want to wake up refreshed, to actually feel awake and to have energy. i cant remember what having energy feels like, but i am still functional which is good.
sorry for the ramble.

when u asked about standing still like in queues, do u mean am i figgety? i think I'm fine with that, i do get tired, i feel like im draining right now and all im doing is sat down watching tele/on the net, thats the weird thing about it, feeling tired watching tele and lately i would go into a shop as want to browse but apart from feeling really thirsty, i start to feel really like i cant be arsed and cant even have the will power to do that if that makes sense. i love films, i have so many on dvd but lately i cant sit through one at home, i think because i know i have the option of turning off so i do. i go to the cinema and can sit through it fine and i do enjoy the cinema, but my mind wonders a lot so im not totally following the film. i find i am always daydreaming.