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.

I get the sweats too, but it was worse about 11 years ago as I had it constantly...at work with what felt like a stream running down my back ~ ugh!! and waking up in the night in a pool of sweat...I am currently peri menopausal, so I get hot flushes, but I do still get the sweats too, but not so much at night right now.

It's strange you know. I think that reading through your posts has reminded me of what I actually put up with. I mean, I do get the symptoms, but mainly just live with them :(. I know that I can't concentrate. I know that I have to retype/correct my posts as my fingers don't go where my brain tells them to. I know I get numbness and tingling. I know that I forget conversations mid sentence, get headaches that could kill a Rhino...and on and on, but I ignore most of the symptoms or maybe I've just go so used to them that I do just live with them. The only two that I can't seem to tune out are the Tinnitus and the leg pain.
This illness is crap isn't it?

Yes, my words get mixed up too. It causes much laughter in my house when I tell DS to put his jumper in the bin (washing machine) or ask DP to fetch the flashing thermometer (tape measure). I know I'm using the wrong words but I cannot figure out & say the right one. I feel so stupid

All those things you mentioned, Solo, I have too apart from headaches, thankfully. My tinnitus is awful and worse when I am stressed or tired. I was being treated for Meniere's disease but I think the dizziness & tinnitus is from the ME rather than anything else.

I spoke to work this morning who said not to go in next week - I don't feel up to it so I'm glad they suggested that as I was going to try. I know as soon as I go back, I'll be in pain and will have to stop anyway. I\m too scared to give up work as we have no other income but I need to change something.

Bedtime for me now.

I'm really glad you've got another week off!

i am alot like you too solo, and have put up with it, but the last few years im not coping...... i was drinking a cuppa at 3 am this morning (sleep whats that) and i was reflecting on what my manager said the other day.... after she had told me to pull myself together she asked what could the organisation do to support me!

i replied nothing....but in the wee small hours this am i was thinking all i want is the organisation to understand, dont patronise or give me pity, or sympathy, but just understand....i am employed 30 hours a week, plus im doing a a distant learning diploma (the organisation idea not mine.) i want them to understand that i may not physically be able to do 30 hours a week, but they will get 30 hours worth of work from me. , if i was allowed to do reading at home.rather in a noisey hot office where all the staff congregate between clinical duties etc, and the noise rings around my head till i cant do anything at all.........i might be able to read more, rather than sat looking at the page with my fingers in my ears...during my clinical times, im so much better, its usually one to one, in a quiet cooler room........ all iwant is understanding....

what do you want from your palce of work /family/friends

Belle :( I think the answer is that unless you have been through it or have it or even have someone close that has it, you just cannot understand it. There aren't many people that make a point of reading up on it in order to understand it or help a sufferer that they happen to know.
I work as a prison officer usually. It's a massively stressful and difficult job to do.

From my point of view, I'd just like my friends to not forget that I'm actually ill even though I don't complain very often.

oh I so wish others understood belles, especially Dh. He is understanding and lovely but I think it is hard to really understand how exhausting tiny
little things are unless you have been very debilitated yourself. I hate being thought of as lazy so get quite hurt by any thoughtless words. I have a very understanding senior colleague who knew me before I was first ill so can sense when I need support - something to do with me not being able to string two words together at those times I think! I find the young collegues are the least understanding - in part because they do not know! Maybe the spoons theory to your manager would be helpful? I have been told (by occupational health) to take a rest when I need to but I struggle to do that when we are busy as being NHS we always are! belleshell could you ask for study time either at home or if that is not possible in a quite space away from your colleagues? Could some of your collegues be told that because of your health condition you may need to slow down and rest.
Good you have another week off grockle.
I am particularly getting night sweats at present ( since my op andlots of prednisolone) so I wonder if infection of some sort is underling my CFS/ME. Stressed Mum the burning legs sound very uncomfortable. Mine is not as bad as it used to be - possibly due to the Ametriptalline but the tingling in my fingers drives me mad!
I have to do continuing education/prof development and before I was ill got top marks (multichoice stuff based on the text) but now often make errors such as misreading questions (not true for true). Stupid mind fog!
Just had a little weep when a lovely lady rang from ageuk about a homehelp ( yes I know!! I thought I was too young too) but the relief that there is someone out there that can help with the basic chores is eneormous (Ds has autism).
Fuzzpig it might be worth checking with ageUK if your DH could get post hospital homehelp care from them. They have a carers fund to assist with initial costs!

I will have a look thanks, he is 44.

I don't understand how we can be so exhausted yet not sleep. I've always had insomnia and am going through a bad patch again - I'm up for about 3-4 hours in the middle of the night but am too cold and achey to get up and do anything.

I don't know what I want from my work... I'd like understanding and flexibility but I don't think that's possible. I agree, it's one of those things that you can't understand if you've not been through it. And unless you complain all the time, people forget. I'd like my family to bear that in mind too, Solo. They know I'm not well but I try very hard to get on with things when we are together and I think they just don't understand. I suppose there are lots of jobs like ours where you can't just rest and take it easy for a bit because of the nature of the work.

I often get tingly fingers & toes and when I'm really tired & dizzy in my lips too. Someone asked me to explain what happens to my legs the other day & I couldn't describe it. It's sort of like wearing chainmail - they feels so heavy that I cannot lift each foot up to take another step - I shuffle. I can feel my hips grinding in their sockets & all my muscles feel like I've had cramp in them. How do others describe what they feel?

I had no idea AgeUK might be able to help. That sounds promising, magso.

Hi, sorry you're feeling so grotty Grockle, and many many apologies for this hijack!

Have just read a lot of this thread (but not all) as my DS1 (23) has been ill for about 2 years and a lot of his friends (he lives miles away) think he has ME/CFS, and i'm beginning to think its possible too..
When he was here in August he had a lot of tests done at his old GPs, but they've not come up with anything.
If i list his symptoms can you tell me what you reckon please?- Night Sweats which wake him up, bad dizzy spells (now twice a day) where he almost falls off his chair, extremely knackered no matter how much sleep he gets (he's so tired by 5 0'clock he slurrs his words somedays), numbness in arms/hands, he can't drink alcohol coffee or tea anymore or feels sick and faint, heart palpitations, back pain and now his hip joint has started giving him pain at night too which wakes him...and no, he doesn't do any drugs, he cant they make him too ill..

I have noted that Gilberts Syndrome is common with ME sufferers - he was diagnosed with Gilberts 8 years ago..because of that he's learnt to eat regularly and snacks inbetween, or he suffers and goes extremely yellow (common to Gilberts). He eats good food not rubbish. So its not lack of food thats making him feel bad.

From what i'm understanding it's hard to get a proper diagnosis as there's no definitive test for CFS, is that correct? Also no cure.. Have any of you sufferers tried anything like Acupuncture, specific diets etc.. i.e any tips as to how i can help him? Hes just started a full time 8 month paid Internship, which are like Gold dust and hes determined to do it somehow even if it kills him.

Oh, one more thing - He was in A&E a few months ago peeing blood, they couldn't find anything and think he must've passed a Kidney Stone (the 2nd one in 4 years). Is there any connection with ME (maybe particularly in men) and that?

Apologies for long post, thank you for reading! Any suggestions would be very gratefully appreciated, i'm so worried about him

Its worth asking, especially if you ar SP or your DP is also unwell or you are carers . I will admit to being a little over 44.
Having read up a little on mitochondrial disfunction ( mitochondria are our cells energy suppliers) as a putative cause of the symptons of CFS/ME it makes sense - from the pain in muscles to the total exhaustion ( all systems depend on mitichondria). The adrenal exhaustion theory (a different theory) would explain some of the other difficulties.
Hope you all have a good weekend.
Hows your DH Fuzzpig?
I read a little about heart failure because ME/CFS has been compared to the debility caused by at least moderate HF ( but without the deterioration) and have wondered about explaining it as a bit like HF that may get better! What do you think? Bet people would understand better! (Dr Cheney - he had HF and noticed his ME patients had similar debility)

Those symptoms sound much like mine, Jellycat. And my blood tests always come back ok. I don't know what Gilbert's is - I'll have a look. I don't know about weeing blood- that doesn't sound good. I do hope he's ok. What a worry

Sorry Jellycat cross posted with you. I have a friend (male) who has Gilberts syndrome and developed PVFS but has fortunately recovered (from the PVFS). Interesting! I do not know if there is a connection but it does a ring a bell. Stupid brain of mine will probably remember which bell in the small hours! It does sound like CFS. I think it is a diagnosis of exclusion - ie tests are aimed at ruling out all the other causes of debility.

Oo yes do look up Gilberts syndrome/disease Grockle, it says on the ME association website that its very common with ME even though its a hereditary disease..

Many don't know they've got it, but it was discovered after my DS1 was diagnosed, that my entire family have it. It is often undiagnosed by GPs, as they have to test and retest your Bilirubin levels. Everybodys can test high periodically, but then drop to normal levels, with Gilberts it doesn't drop down.
It can be managed by eating regularly, and avoiding foods containing Niacin amongst other things.

Worth checking out, as the symptoms can be similar to some of those for people with ME. i.e Fatigue, headaches, joint pain etc

Heres a link www.gilbertssyndrome.com/symptoms/php
if you scroll down to the patients experiences you'll see that some were originally diagnosed with CFS!

Trouble is DS1 is managing the Gilberts as he should, but still has the symptoms, thats why i'm querying ME now.

Hi JK :) nice to see you again, though not so nice on this particular thread :(

When I first got symptoms of ME\CFS I carried on doing everything; single Mum, working full time, completely pushing myself and my enjoyment? 6 hours a week in the gym!
After dx, I was told by another ME sufferer that I should stop work, give up the gym and rest, manage my illness instead of doing what I'd set out to do...'I'm not letting it beat me' If I could go back in time? I'd do exactly what she said. I might actually be well now.

I get the slurred speech too, but not too often thankfully; got asked if I'd been drinking once
I seriously hope he doesn't have ME. It seems to hit conscientious, hard working people, which seems completely unfair...

Solo! Long time no see, we've obviously been in different topics all year.. Good to see you too

Scarey that you get the slurred speech as well, theres no way DS1 is going to stop, he finished his degree last year and has tried for 18 months to get a paid Internship in a completely different subject, on quite a few occasions he was so down, i was terrified. I have suspicions that his last 18 months of working late nights, finishing at 2 a.m and not being able to get to sleep until 4/5 a.m has really messed him up, (it has left him virtually skeletal) so now hes got a 'normal' bodily routine i'm praying it might help..

How long did you keep pushing yourself through it? Do you think by somehow keeping going for another 7 months, it maybe worse for him long term? i know its probably difficult to say, but do you think him being only 23 he might get away with it, IYSWIM?

magso Interesting about your friend, i'll look up PVFS, as i don't know anything about it.. Glad your friend recovered!

i was diagnoised 2 yrs ago JK but the onset and investigations started 10 yrs ago, becAuse they couldnt find owt wrong i too carried on, parent ,wife, nurse, freind, no support! i just thought i was pathetic, not been able to burn candle at both ends (although i often tried) since diagnosis i am now dx, single parent ( with a loving and trying to understand partner) i live closer to home, but still have to work to keep a roof over our heads.... diagnosis made me realise alot of things........but i lost so much too...my ds lives 100 miles away with his dad now because i needed to move home after dx to have support. ds choose to stay at his school and therefore live with his dad. my ds came with me...so on top of all this ME shit i have the guilt of making a choice that split my family........however it wasnt an easy choice my specialist told me if i didnt tackle my demons i would end up bed bound...bed bound with no support from ex outlwas and 2 kids.so i choose to come home.........i get the support now, and in many ways i am so much ahppier...

after the comment this week about pulling myself togethr i just wish i cold find a job that i could afford to live on wages, far less hours, but......i fought bloody hard for my career i love my job......i apparently working for a caring organisation (NHS) obviously not...its just a business like any other...

moan over sorry

its barely 7 am i have a splitting head headache, i have already spilt a boiling hot cuppa all over me and floor ( hands not working) and i have to drive half way this am to pick up ds from our meeting point..........he doesnt want to come he is missing out on doing stuff with his mates!!!!! but i havent seen him for 3 week so i am pining.......when actually today all i really want is to curl up and hide!!!

ok i m going before i bore you all senseless with my self pity.....hope you all have a good day. xx

Oh Belle, what an utter nightmare for you. I'm so sorry.

I think you've hit the nail on the head - the feeling pathetic because you are failing to manage to burn the candle at both ends is horrible. I've had another tearful meltdown today. We were trying to get ready to drop DS at his activity this morning - I said what time we needed to leave by & went to get myself sorted. 5 minutes before we needed to go, no-one was ready, DS was messing about, DP was doing other stuff so I shouted & cried. DP said he was trying to help & listed what he'd done & I reminded him that I usually do ALL that before I go to work. His response: Well, you didn't have to today, did you? ARGH! Why can't he just get ready? In all the flapping & me getting stressed, I forgot my meds & left my wheelchair at home which meant hobbling in agony all morning. I can't flipping do it.

I've tried to explain that I need an awful lot of help but no-one seems to understand just how much. I really can't do anything for myself - even getting dressed requires me to have someone helping.

Do any of you have a good way of describing the brain fog & inability to understand basic things. The spoon theory is great for explaining fatigue but I feel like my level of understanding on a bad day is similar to that of the severely autistic people I work with - it is really minimal. I can't cross roads safely or anything.

Grockle, I saw this description on a blog.

"my cognitive function deteriorated massively over almost 2 decades now, so that I can no longer do what I call in/ out transactions.

Anything requiring information to come in , whether reading or listening, be understood, then reflected upon or thought about, then acted on in some physical way in some out going action such as writing, speaking , sorting out, dealing with externally, is quite simply and shockingly beyond my capability.

I cannot tolerate or comprehend noise or information, I cannot bear visual stimulation requiring focus or cognition."

When I had Ds JK, I went back to work when he was just 17 weeks old, still bf and starting work at 07:30. In order to feed Ds, take him to Mum and Dad's 8 miles away, get my bike on the road and get through to work some 20 miles away; I had to get up at 04:30. On my 'normal' finishes, I got back to Mum's at around 19:00, fed Ds, ate dinner made by Mum (thank God), packed up, went home, sorted expressed milk and all necessary items for Ds's next day, went to bed. Now change to the late finish and getting to Mum's at 22:00 ish, feeding Ds, eating dinner, getting home, sorting bottles and next days milk...bed at midnight to half past, up again at 04:30.............................if Ds woke in the night, my 4 hours sleep became less, if he was ill, less sleep, add in the factor that I give my absolute all to my work whilst there and it is very physical, stressful and demanding. No bloody wonder I became ill.
JK I do think that if your Ds1 gets proper rest, good nutrition and listens to his body, then he can manage ME if that's what he has. Should he ignore what his body is saying, then he is setting himself up to be ill for a long time (my opinion and experience). You can probably get a good idea from this thread that it's just not funny. It's invisible and it's hard to prove or explain. I feel that the 'brain fog' part which btw is massive! is like trying to strain your eyes to see something through a foggy window; you can't wipe it away because the mist is on the other side ~ it's frustrating. I think that ME is like lots of pieces of jigsaw missing; sometimes more pieces go missing and sometimes, they are there.

JK you have my number, if you want me to talk to him, I'm glad to.

Blimey Solo, what you had to do was excessive, that was having to push yourself to the extreme!

I can say DS1 is listening to his body, he's learnt over the years how awful it is if you don't with the Gilberts. He is ok with saying no when his friends try to get him to go out etc, nutrition is good too from working in the restaurant trade and having a good Greek great granny who taught him to cook well.

I'm speaking with him tomorrow, thank you loads for the talking to him offer, we may take you up on that at some point (i'll PM first)

I know your ME is worse sometimes, is there anything that you suspect starts off the really bad periods? Has any research been done into it by any medical professional?

I'm so sorry all of you on this thread have this, it really truly sounds horrendous.

Crikey Solo - that's enough to break anyone.

Solo that was extreme working parenting! Interesting as I was convinced that the very sleep deprived year or so proceeding my pneumonia and development of CFS was the reason I became ill. (ds has sn so 24hour care needs). Also with ds you always have to be on high alert IYSWIM so perhaps long term physical and mental overuse so to speak is a set up to vunerabllty.
I don't know how to explain the brain fog. I tell my colleagues I have to sit to think( but actually I need to lie down - obviously not possible at work!) and often have difficulty speaking after walking round to a collegue,so will try to sit or lean on something in attempt to get my head in gear. When I first went back to work after pneumonia my blood oxygen levels were low and I did keel over a few times, - the fog is similar now, it's as if my whole body is not getting enough O2!

JK my friend made lifestyle adjustments to allow a less stressed work life, and is now very much recovered. PVFS is post viral fatigue syndrome.