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.

Grockle I was just wondering are you planning to ever seek help for the OCD?

Um, no! Only because it doesn't hugely impact my life atm. If it did, I might. It has certainly got worse since I've been ill but it is really lots & lots of little things that hopefully go unnoticed until you know me well. People joke about getting me Day of the Week socks just to upset me

I feel ill. If I make it through the week, it'll be a miracle. And to top it off DP is with his parents & has decided he's too ill to come back here so I'm on my own. That'll make 5 days on my own & I need help. rah.

Bugger :(

Is it CFS type ill or is it something else?

I keep daydreaming about a CFS commune where we can all chip in for a cook and cleaner share the load equally and understand each other.

I have ocd tendancies too but like you grockle its little things like all the spoons in the drawer being up the right way and everything in the cupboard facing towards the front, irratating things for family and friends but nothing that most people would notice.

I've had a coldy thing for the past few days and although I feel better from that I feel completely drained.

I like the idea of a commune, sign me up

CFS type ill. So hurty and tired but unable to sleep. I have so much to do.

If DP is going to go through yet another phase of not coming over & being incredibly unreliable, I need to find the strength to leave him. I don't want to but DS & I have enough trouble coping at the best of times. We both need stability. So if I come here moaning about DP's absence, can you please remind me that I need to tell him enough is enough? I don't have the strength to do it at the moment but I think it may come to that

I will think about my OCD tendencies & tell you what I do another time. I don't really notice because it is such a part of my everyday life but other people comment!

Feel better soon, smiling.

I think a commune is a great idea. I'm in!

Oh grockle. I'm really sorry he's not being the partner you deserve. I will endeavour to remember to give you a gentle prod if you need it. :(

I don't think anyone would guess I have OCD/tendencies TBH, being very introverted I keep it all to myself. It's all in my head, obsessions and repetitions, my brain won't shut up. I am always thinking at a million miles an hour, and in that sense whether or not I have OCD the psychiatrist was totally right - it is exhausting.

Thanks. I don't think it's all DP's fault - he gets very depressed but I don't think he deals with it very well & he goes into hiding at his parents. He says he doesn't chose too but it's happened enough times that I think he does. And whether or not he chooses too, it's not fair on me (especially now I rely on him so much) or DS to not know what is going. DS really needs security atm.

I think like that too - I don't know if it is a CFS thing or a mental thing or just me but I have a million thoughts in my head but can't quite complete any of them. It's like my mind has been put in a blender. And yes, it's exhausting. On top of everything else.

I made a list of some of my OCD things but I'm too embarrassed to post it! I think I've probably got half the things I do - this was just off the top of my head.

OCD type stuff

Everything must be centered/ symmetrical/ level & even
Notice & like numbers on clocks (11.11 etc)
Volume must be on even number or, even better, multiple of 5, ideally 20.
Cans stacked in cupboard all facing forward (& also in lines - beans, tomatoes etc)
If I turn one way, I have to turn the other way to undo it.
Packets MUST be opened the right way up
Stir clockwise
Cupcakes/ biscuits etc should be placed in a repeating/ symmetrical pattern, not randomly
Can't wear socks in the house - the second I get in, they come off. I cannot put them on again if I have to go out so I have to have a new pair. I can get through 2-3 pairs of socks a day
Dishwasher must be stacked properly
Everything must be put in it's place (this is more a CFS thing because I cannot find anything)
If someone sneezes in the car, I must open my window (or not breath for ages) to get the germs out
If I go out to eat, I must not have my back to the restaurant - I have to see what is going on & where people are

WHen leaving the house, I must:
Check the doors are locked (even if someone else has said they are)
Check I have my phone, keys, purse (several times)

Laundry:
must be pegged out - all whites/ blacks/ colours in sections
trousers & socks pegged by the foot end
MUST use matching coloured pegs for each item, ideally peg colour should match or be similar to the colour of the clothing

Not always but ideally:

Don't stand on cracks in the pavement
If you walk over a 3-thing (square manhole covers joined together) then you must walk over the next 2-thing to 'un do' it

LOADS more!

This has reminded me that I was due to see my psychiatrist 2 weeks ago & they cancelled & haven't rescheduled. I think I am the verge of a wobble.

Omg Grockle I do EVERYTHING on your list

It doesn't make you a bad person, smiling!

I was told that it's not what you do, it's how much it impacts on your life. My things don't really stop me doing anything & I think most things are sensible anyway, rather than odd. It is DP who raises eyebrows when I roll back over so as to undo the turn. It all makes sense to me. I can't remember my other things. I work with severely autistic children and I do a lot of things that they do too! I don't cope well with changes to routine or with surprises or with plans being altered. And I flap a little too, just like my lovelies at work!

I'm a very calm person and can be a bit of a control freak so for me its about being in control I think, it doesn't really impact on my day to day life apart from when I'm having a bad day (with exhaustion) and get really upset and worked up if I can't remember if ive done something the right way.

I have OCD tendencies too! mostly numbers and reps in 4's, but I try to do more or less on purpose! it started when I was a kid, but started with 3's and I dec ided that an even number was better...I'm also a hoarder and have no order in my life, though I used to be ok and tidy; now?! crap! it's awful. And I'm a control freak, but I think that's because I've had so much abuse from men (partners/husbands) that I've had in my life :(.

I just live with the OCD and nobody realises I have it.
We have OCD and Autism in our family.

Grockle you would be so much better off without your oh. He seems to do nothing to enhance your life and the sooner he was gone from it, the sooner you could stop being let down IMHO.

i am a control freak too, my closest friends laugh at me, they call me the leader...if we are out i have to walk in front and herd them.... the 1000 mile an hour brains is a cfs thing i think, its our inability to switch off thats why we are always tired..........

i write lists.thats my thing i have lists for lists.............

I think if you started a separate thread on relationships board a lot of people would tell you the same as solo, grockle. :(

Most of your list seems pretty normal to me! I think for me, it doesn't impact my physical life - I'm not doing the cliche of cleaning things (ha!) over and over, nobody else would see them. But my anxiety is ruining my life. Definitely.

I want to write a list soon of everything that bothers me. I do things like asking DH things several times like if he checked food properly (I am terrified of mould on food) or if he locked the door, that upsets him because he thinks I don't trust him. But it's more that I don't trust my memory. I very briefly studied OCD at college and one of the theories was that it was partly due to a short term memory problem - you can't remember if you switched the stove off etc so you have to keep doing it. Not a popular theory IIRC, but it's interesting that so many of us here have the tendencies, when CFS has a big impact on memory!

CFS specialist asked me during the appointment if I was anxious or panicked. I said no, I don't panic.

I wasn't lying. But I do feel anxious pretty much all the time - it's like a background, because I'm so used to it. He also said he was concerned about how highly I scored on the mood questionnaire - I said that my answers actually indicated I am improving (I do think the amitriptyline is helping, unlike any AD I have tried before). But he said it is still bad. But it is normal for me. I have honestly never had a completely carefree, non depressed day in my whole damn life! I can't imagine ever being actually happy properly. That sounds really maudlin and melodramatic but I genuinely don't know any different. I think I was just built this way. My parents are the same. It makes me scared for my DCs though.

Well I have some quirks (letters to post by the door, not putting slightly worn clothes in the wardrobe with all clean -that sort of thing) but they are to support my dodgy memory - which has always been poor but since CFS its got terrible. When we run low on something I cannot remember that I have already replaced it so keep buying more so we end up with 3 lots of spuds/dishwasher tablets or whatever. Drives my husband mad! I am not organised enough to always write a list - I did not used to need one! If I wrote a list I would loose it anyway.
I think it is the variability that is so difficult on the day to day basis. My memory is at its worst when out and about - but when well rested it functions more normally. When trying to find words to say, spell a simple word or recall my telephone numer (no chance) -the dysfunction is embarrisingly obvious but other times I am unaware of the 'black holes' in my memory.

I had a difficult day at work last week, which I think was because I went to a (work related) meeting the night before and was low on energy.

Belle I also write lists for lists, it drives my dp and bosses crazy but I worry if its not written down incase I forget.

My OCD things have been with me since I was a child so long before I had any symptoms of cfs but it is interesting that we are all so similar I wonder if we haave just worn our brains out by constantly thinking and worrying!

I'm not a worrier and I wouldn't say I have ever been depresssed, I have low days where I feel like I've had enough but its more because I'm frustrated about not being me anymore. My gp once told me to keep a diary and on one page write down everytime I smiled or felt happy in a day and on the other page everytime I felt sad/cried/wanted to give up, the happy side filled up pretty quickly, it took 4 days to fill one page of the sad side, when I showed my gp she said "see even though you have every right to feel sorry for yourself you still feel happy more than sad, you just remember the sad because its a stronger emotion to you when your feeling so unwell" its stuck with me and when I'm feeling really upset/ill/sad I remind myself that I still have things to smile about

Grockle I agree with the others your DP should be supporting you not disappearing when he feels like it, you should be using your what little energy you have on yourself and your wonderful son not on thinking about a man who puts himself first.

www.telegraph.co.uk/health/healthnews/9699911/ME-isnt-all-in-the-mind-but-its-still-a-mystery.html

thanks this link is great!

Interesting link thanks kate

Does anyone else suffer with mouth ulcers? I never used to get them but lately I seem to have them every other week, i didn't have any this morning and noticed at lunchtime I had one on the tip of my tongue now my tongue is covered in them, I feel like stamping my feet and screaming but that would take too much energy

That was really interesting.

I was gutted I didn't get a chance to talk to prof W about what he thinks causes CFS. I mean he talked about what may have predisposed me to it and triggered it (stress, infection) but not about the exact cause, be it mitochondrial dysfunction or whatever. I just want to understand exactly what is going on in my body! But then we all do I guess.

I'm relieved DH is able to pick the DCs up today, as the jobcentre messed up his appointment he's going tomorrow instead. Going to the doctors tomorrow to ask for another sick note and more amitriptyline.

Ugggh I hate mouth ulcers. Used to get absolutely loads in my teens, thankfully not so much now.

They're a classic sign of being 'run down' but I've heard it's often due to some deficiency, I think vitamin b or zinc or something?

One thing I find useful is corsodyl mouthwash - it is much stronger than usual mouthwash, I actually had it prescribed once for an infected tooth because it's antiseptic. I use it diluted, but it does seem to nip any mouth problems in the bud.

I've found tcp works brilliantly at getting rid of them am just fed up with getting them

I thought I was the only one with lists for lists The theory of OCD tendencies being related to poor memory make perfect sense to me. I check things repeatedly because I don't trust myself. I'm terrible for buying multiples of things because I thought I hadn't bought it - DS has 2 xmas cards for his Dad, he had 2 '7' candles for his birthday and we have had 49 toilet rolls in the cupboard before now!

I'm also a control freak. It's a bit of a problem (not for me!), quite probably due to issues in childhood & cheating exH.

I worry about DS - he's such a worrier & I fear that he has inherited a depressive side from me. I don't want him to go through any of what I have. I'd be devastated. So, when he said the other day, he thought it'd be better if he killed himself, I was shocked & pretty much distraught. Poor baby. Well, 7 yr old.

Yes to mouth ulcers - it's a new thing.

I think you are right about DP Today has been lovely & calm without him & DS has been lovely. It's hard work but quite pleasant without DP. But then I get all silly and think 'but I love him...' & then I don't understand why I love him when he makes my life so difficult To be fair to him, he has had severe depression for about 18 months and winter is a bad time for him, especially in December with his birthday, DS 1&2 birthdays, Christmas etc. But still, he's so unreliable & self-indulgent. I don't get to hide away for 4 days when I feel shit.