People with CFS/ PVFS/ ME - how did you get diagnosed?

[Grockle]

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

Well the GP i have now is new , as i changed due to moving house.I have not yet bothered them with this .

But well. Is there any point ? They cant do anything if it is. I dont want to have CFS . I mean it might not be. If i do have it im sure it is mild as im not as bad as anyone on this thread seems to be. Im feeling much better this evening after doing pretty much sod all for 2 days. I might get to enjoy my weekend tomorrow now.

I will go obviously in case its thyroid or similar , although i wish i could remember if it was tested last time. Have a feeling it may have been but i just cant remember. Anyway that was 2 years ago so even it it was fine then it might be worth a re test.

Its like that horrible fluey feeling. My head feels fuzzy and my neck and back ache. Just a general bleugh feeling mostly. I sometimes feel my eyes wont quite focus but they must be focusing because i can see.

Yesterday at work i felt awful - very nearly came home. But after a shit load of ibuprofen and paracetamol i did feel a lot better. Til about 6 when i was bloody knackered again. I had just enough energy to get through the day then crashed as soon as i got home.

Somebody... I think it might be worth making a list if all the issues- the tiredness, aching, paying for doing too much. Include all little things that don't seem significant (for me, that includes hyper mobility, frequent sore throats, persistent irritating cough) & compare it with symptoms of CFS/ fibro.

See your new GP with ALL the info & see what they say. It is hard when you have a history of depression because gPs seem to attribute everything to that. I swear that if my leg fell off, my GP would say it is becauSe of depression.

Hi, I've just read the entire thread and could weep for all of you. I am sure you will have been tested for most things including vitamin D and calcium but didn't want not to say anything just in case it might help someone.

I'm going through tests myself for a whole host of symptoms similar to the ones posted above but a few things up thread rang bells with me - painful hips, aching legs, unable to walk (especially upstairs), brain fog, depression.

The last specialist I saw was at the fracture clinic as I had an accident but he is convinced I have a problem with my parathyroid gland which controls calcium levels in the blood. I have low vit D, high parathyroid hormone and high calcium - all possibly pointing to Primary or Secondary Hyperparathyroidism. The symptoms of this sound very similar to CFS/ME.

I have posted this on a couple of threads as it has given me some hope that something can be sorted out for me and maybe help someone else. There are a couple of good websites out there about hypercalcaemia and hyperparathyroid - it's a long shot, I know but it might help one of you.

(I must have posted about this on half a dozen threads as I can't believe that after years of feeling crap there actually is something potentially treatable wrong with me.)

Hi Somebody :) erm...do you get palpitations at all?

Just wondering about an over active thyroid...

I'm in a lot of pain today (yesterday) and not feeling good at all.

Hello again. Thank you for all the replies.

I will be making a list grockle and tryin to book an appt next week. I can be very assertive so i will be making damn clear it isnt depression related. Again.

I dont get palpitations that i am aware of solos but i will be asking for FULL thyroid T4 , T3 and TSH as well as coleic (sp?). Do you think they will try and refuse or will they just let me have these tests ?

And i always have a bloody headache and noises can be almost painful when i have one. Im going to look a right nutter arent i ?

Anyway hope you are all having better days today :)

Just found my old thread from 2 years ao. Not much has changed. link

Somebody..your not a nutter, as much as you may feel it.I FEEL IT TOO, BUT I HAVE TO FACE I AM ILL....

As for the pay back thing, i have been in bed 2 days solid this weke all because i went to theatre sat night.i was driving and home in bed by 10.30pm at the very latest....sunday i took dog for a walk.20 mins max because i needed fresh air.... was in bed most of afternoon and DP took me to pub for 1 drink.....monday, tuesday and wednesday till 2-pm i was in bed....pay back for my not so hectic weekend......i remember finishing late shift, going out straight from work in at 2am so start early next morning at 7.30am........ i would need a week of before and after anything that meant me not been in bed before midnight.........

Where as my life gone.is often how i feel......

so no your not a nutter.........you just need some answers, and tell them this isnt depression you know what depression is like and this isnt it!!!!

good luck xxxx

Somebody, I hate noises too (even when I don't have a headache). I find loud voices difficult to hear/ understand and other noises either blur into one big noise or just really hurt (diesel engines especially).

Tis miserable

i hate noises too........sometimes i just want to scream ssssssssshhhhhhhhhhhhhuuuuuuuuussssssssssssshhhhhhhhhhh!! i sit with my fingers in my ears, i feel so rude but i could cry with the noise sometimes...x

I put my fingers in my ears too

Do any of you have tinnitus? I have it badly. I can't bear loud noises and if I am driving with an open window and there's a siren/roadworks/other loud thing, I close the windows quick smart!! yes to fingers in my ears too.

we can't tolerate loud noises because the illness is a neurological one - my df had a head injury from an accident years ago and he had to be kept in a calm and peaceful enviroment
to allow the brain to recuperate

same with tinnitus - i can hear heavy rain sometimes at night when i lay my head on pillow - sit up and there is complete silence no rain outside - sometimes i can hear voices like on radio news or something its v odd almost like recordings in my brain playing back - now i sound really nutty don't i

I don't mind loud noises too much but constant noise irratates me, I can put up with it for a few minutes and then have to cover my ears, sometimes ok all the time when people are talking to me I want to scream at them to stop. My ears ache all the time and sometimes I get a sharp shooting pain deep inside them.

Does anybody else have a problem understanding what people are saying to them? Simple statements like "can you pass me the salt please" just dont translate for me, I sit staring at them completely lost until they repeat it 3 or 4 times, its really starting to scare me

Well done GROCKLE for getting the blue badge! Perhaps I should have appealed but as I am rather less ill now so perhaps for me ( not you!) it was the right decision. Having said that I've had 2 near collaspes this last week (half term mummy duties) where even a blue badge would not have helped!

Yes I too cannot cope with repetitive or constant background noise - problematic as ds (who has ASD) needs and makes constant noise! When illest I get oversensitive and jump at the slightest thing as if my reflexes and pain responders have gone into high alert. My tinitus (I hear the swish bump of my pulse very loudly, sometimes a high pitched electronic whistle) has come back - I was blissfully free of it since my sinus surgery(and high dose steroids). I had high hopes! BooHiss! I get earache (also recently returned) quite a lot SMILING. I suspect your needing to rehear phrases SMILING is a processing delay. I get this too sometimes. I think my brain just runs slow when its struggling. I have trouble at work in taking in information especially when standing or after walking.

I read that link (thank you-was it CFSKate who posted? ) for clinics DX and management of ME patients (as opposed to CFS). I do many of the things suggested including resting when my HR approaches 180 (30 per 10 secs by which time my pulse is thumping away so loudly I am sure all about can hear!). Does anyone know how to workout when the body changes from aerobic to anaerobic activity?

BELLES hope you recover from your modest weekend quickly. SOMEBODY sorry you are joining us (wish you were too well to need to!) just read your previous thread and wondered if you have had your B12 checked?

BESTISWEST good point about checking parathyroid and thank you. I was diagnosed with CFS by the endochrinologist after blood and urine checks. Do you think the checks for parathyroid would have been included in the blood tests I had?

Grockle you can also get it on DVD, and apparently some way to watch online for £2.39

Christmas shopping amazon link for ME Research, also other shops

magso was it this one about the heart rate monitor?

fuzzpig are you going to St Bart's? I have heard they take a psychological approach there.

Yes Kate I'm going on the 21st for an initial assessment which supposedly takes 2 hours. If I'm diagnosed then I get "thirty sessions of a multidisciplinary treatment programme" whatever that means! I assumed it would include CBT but also maybe look at other aspects like diet and medication. I want to go into it with an open mind as I really do believe I will get better - but I don't know when, or how, and sometimes I feel that the only thing that will help is time. What I really need to sort out is whether I should stop work or not.

While I'm here can I ask y'all a personal question - birth control? Do you or have you used any, and do they help or worsen symptoms? I've never used anything except condoms but I was thinking of trying the implant thing in my arm. I really cannot afford (in any way, not just financial!) to get pregnant. But I've always been nervy about changing the natural hormone levels in my body IYSWIM. DH willing to have the snip but I am only 25 and it feels too drastic a measure!

Any thoughts?

I didn't cope to well with the implant but could just be that it didn't agree with me rather than being anything to do with cfs, I've tried several pills and have had different side effects on most of them but am currently on yasmin which seems to be working fine (has been 8mths without any side effects)

i had coils........neither agreed with me.pill made migraines worse so it was condoms...DP had snip recently .i think a baby would finish me off

I wouldn't remember to take a pill every day, and I totally freak out at the idea of an IUD, which narrows my options down a bit

A baby would finish me off atm too. I have no need for birth control so am unable to help. I've always taken the pill (which I am tempted to take again so I have more predictable cycles and less dramatic mood swings)

I have a reminder alert set up on my phone for the pill, a baby would finish me off to, before I got ill we were talking about trying and paid for DP to have a vasectomy reversal (he has 2 children from a previous relationship and is 12yrs older than me) but I can barely look after myself never mind a newborn

We were having the same discussions, smiling. Thankfully, we'd not got as far as a reversal. I still often wish for a tiny baby but know it would be a very silly thing. It would be no good for me, or DS or DP not to mention a poor newborn.

(we got a dog instead )