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

(995 Posts)
Grockle Wed 11-Jul-12 22:27:59

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.

belleshell Tue 20-Nov-12 14:16:19

well week 3 of phased return...........i actually feel quite good, which scares me because im waiting for the boom bang crash !!! im trying not to do tons of stuff when not in work, but its hard when everything as been on hold and christmas is coming.i have actually finished the xmas shop but DD has so many things going on im like mums taxi. i do wonder how im gunna cope witht he party season seen as im in bed by 9 at the absolute latest atm.... how do you turn people down!! its so hard!

fuzzpig Tue 20-Nov-12 15:33:19

I guess we are lucky we have no friends round here so we can just shut the world away. Maybe there's advantages to being hermits grin I would go mad without you guys to type/talk to though!

Magso - good luck with your appt, please let us know what they say about the tachycardia, that is the worst thing for me at the moment (the pain seems a bit better since increasing amitriptyline!) and it is very distressing isn't it sad I am wondering if they'll do any tests for it tomorrow as I've read about things like tilt tests but then I also read they are now considered outdated?! I have been wondering if I actually have POTS rather than ME as it is such a bad symptom, but then that wouldn't explain the joint/muscle pain I think?

I am so glad my appt is finally here (2pm tomorrow), am nervous that they'll say I'm not bad enough for a dx, or that they still won't know what's wrong.

I guess grockle must be finishing work about now, hope it went ok.

belleshell Tue 20-Nov-12 16:13:51

Fuzz good luck tomorrow, i have been to two different services, and both followed a similar assessment pattern, i t was alot of talking, question and answers at both. as for the POTS thing it is possible you may have both, i think its something that needs following up. have a look at the arrhythmia alliance website, im sure there is a section on there about POTS. Next time your at your GP ask if you will be followed up in cardiology or if they can refer u back for further monitoring, tell them about climbing the stairs and the palpitations. it is all relevant.. ( i used to be a heart rhythm nurse!!!) and they can give u a monitor that u can use during ur palpitations. just for my peace of mind, do u have a regular pulse????

Good louck tomorrow, Grockle hope you are getting on ok, Magso hope appt goes well, everyone else hope your day hasnt been to bad

magso Tue 20-Nov-12 17:53:27

Hope appointment goes well tommorrow and gets you one step closer to being miore well Fizz.
I am off for an ECG although I don't espect it will show anything except Tachicardia. I had a 5 day tape done 3 years ago and as luck would have it didn't have any wobbly episodes ( or faints) only tachicardia.
How did your day go Grockle?
Belles hope you continue to feel OK. I don't do anything in the evenings because I know I can't. I've got used to it now. Having said that I am going to try and go to early evening meeting later in the week. I tried to go last year but was too tired to cope by the time I got there so went home whilst I still could.

fuzzpig Tue 20-Nov-12 18:20:31

Yes pulse is regular, resting is around 70-75bpm so spot on average. Seems to rocket when I stand or go up stairs, but often not by as much as I'd thought IYSWIM?

Had the ECG for 24hrs last July, I had to press a button every time I felt funny fluttery feelings, and write down what I was doing at the time. Had loads of fluttering, but on the ECG nothing was different at those times to my normal reading, so they discharged me. Very weird. I asked the cardiologist if that meant it was all in my head, he said "No, it just means it's not in your heart." It had started getting a bit better by that point anyway (around the time I finally got clearance to start my job, so I assumed it had all been due to stress) so I just carried on as normal. Still had trouble standing up though, eg at staff meeting we all stand for about 10mins, I would be shifting uncomfortably from foot to foot feeling dizzy and wondering how everyone else managed to stay still! I just thought it meant I was unfit, and when I got really ill a year later, that got a lot worse so I finally realised it is not normal!

Grockle Tue 20-Nov-12 19:15:00


I'm struggling. I've been going to bed by 7 more or less every day for the past couple of weeks. My life is work and bed. I don't see DP any more (which has led to a big row), DS is now registered with Young Carers (so I feel guilty), everyone at work says I look well but I feel like shit. I could have curled up in the staff room and slept this afternoon. The good thing is my pain has subsided but has been overtaken by this awful fatigue. I think I'm not coping, mentally. I'm all over the place & seem to have wild mood-swings.

Sorry everyone seems to be having a rough time. Hope things are better and that Fuzz's appointment goes well. Have you had physio before, magso?

magso Tue 20-Nov-12 22:56:17

Oh Grockle that sounds really tough! Do your colleagues know how hard you are struggling? It seems wrong to be be trying to work FT when you are so unwell. Good your pain is less severe but sorry your fatigue has got worse.

I saw a respiratory physio 3 years ago to try and get my lungs working better ( following pneumonia) but not worked on getting fit again with the CFS team.

belleshell Wed 21-Nov-12 15:42:31

how was it Fuzz???? How did work go today Grockle......???? well ive been busy today ( well busy for me) nipped to town ( bought a coal bucket of all things!!!) been and had hair trimmed, been to friends for coffee and now days gone by that would have been all in a morning... still its more than i did a few weeks ago. oooo forgot bought new xmas shoes, they have heels...wonder if i will break my leg in them.

smilingthroughgrittedteeth Wed 21-Nov-12 15:52:32

Oh Grockle the whole having to work thing is shit isn't it sad My boss said to me yesterday that I was looking better, it made me irrationally angry because I've never looked ill, people just dont understand that you can look fine but feel so bloody awful all the time!

Just got back from the doctors, I have anti-biotics for a throat and ear infection, different painkillers and some anti-inflammatories.

And a referal to a gynachologist at last grin

Grockle Wed 21-Nov-12 17:43:44

Well done, smiling. Hope the ABs help and I'm pleased about the gynae... although I don't remember why you need one blush

What a busy day, Belle. It sounds like a lot to me.

Work don't know how much I'm struggling. It makes no difference - I am either at work or not. If I'm there, I need to do my job. Thankfully I had a half day today to take DS to the audiologist (his ears are finally ok!) and then to the shops. Now I've got to take him swimming then speak to a karate instructor and then bed. And tomorrow I have to swim at work. So tired!

Spoons to you all x

belleshell Wed 21-Nov-12 18:13:10

oh grockle if i had a spare spoon or two id happily send it your

fuzzpig Wed 21-Nov-12 19:50:11

Just popping in to say, I had the appointment with Professor White, it went very well and he is pretty certain it is CFS. Just need some repeat bloods first.

Will be back later or tomorrow - loads to tell you all. Think I'd better update DH first though grin

smilingthroughgrittedteeth Wed 21-Nov-12 20:21:08

fuzz glad it went well and waiting patiently for you to update us with what happened.

grockle I'm not sure I said why I wanted referred to a gynae so you didn't forget grin, the first thing I ever went to the GP was because my periods are horrific really bad, that's why I was tested for thyroid and when the test came back and it showed I had an underactive thyroid it was decided that was the cause, I couldn't tolerate the synthetic thyroxine so had to stop taking it but my thyroid corrected itself so it was decided by the endo that my thyroid is fine and the underactive thyroid is a symptom of another problem and not what's causing me to feel so ill. After tests for everything the dr's could think of they suggested ME. My argument has always been that periods are the issue and that they should be considered the cause and not a secondary symptom. I've done lots of research and I finally got my GP to agree that a lot of my symptoms are found in women with endometriosis even though they aren't necessarily symptoms that are listed as symptoms iyswim.

I'm not sure if any of that made sense confused

fuzzpig Wed 21-Nov-12 22:32:07

Right, I'm back. DH gone to bed with upset-post-nightmare 5yo DD, but I've decided to stay down here and relax with a DVD.

Anyway. Appointment was great, Professor White is lovely. Talked for over an hour, about pretty much everything - mostly my childhood, weirdly enough. We focused so much on depression/childhood abuse that I really thought he was going to tell me this illness is all in my head!

We talked about the symptoms and he wrote more notes to add to the questionnaires I'd filled in. Then I had a brief physical exam, during which he checked my pulse/blood pressure - then made me stand up and took them again. I was expecting/hoping for this as orthostatic intolerance is the worst symptom for me at the moment. He confirmed a tachycardia on standing.

I did ask about the OI/POTS, and he said it is a symptom of illnesses like ME, not really a disease in its own right, apart from the very very rare autonomic neuropathy which is a different problem that causes POTS. I am very glad I have had this confirmed because saying 'I can't stand up' sounds lame!

Now the weird bit. He told me why I have POTS. He was really surprised I don't add salt to food, and said I need to start. Also drink more water (2L a day). He said about 90% of his CFS patients have an improvement of that symptom by having more salt and water. Will definitely be trying this!

I was convinced at this point he was saying I am not actually ill, and that the salt thing was causing all the problems, but he clarified to say he is pretty sure I have CFS. Just need to wait for some repeat blood tests, which my old GP had been planning to do before he left - to recheck iron, which was a bit low, and ESR, which was a bit high (both of these are probably because of chest infection) - if these and a few other tests come back clear, then we can go ahead and start treatment (CBT, physio etc - also a research trial which might involve GET). However I could also be referred back to Sussex which would be nearer - I need to choose in the next few days.

I also asked about vitamins, like vitamin D deficiency, he said if my calcium is low then he will test it but it is unlikely to be causing the symptoms anyway. He also said not to bother with supplements.

I have said I'm not going to work tomorrow, I really don't know what to do after that. He said I don't seem ready to go back but that by doing the salt/water thing I may start feeling better (and the amitriptyline is helping already).

He was really nice about what I went through as a child and said the constant stress has left me vulnerable to illnesses like CFS.

Really tired now, sorry this post hasn't made much sense, off to bed now x

magso Wed 21-Nov-12 23:41:24

That's interesting fuzzpig. Sounds like he had lots of interesting information. I had a couple of days of feeling really well in the summer when we stayed in a hotel in Cantal on full board (we booked the wrong board by accident) so all the food was cheese salty ham. I wondered if it was the mountain air or the salt. It didn't last. I do find I need to drink gallons (and of course always need the loo).
My ECG was fine as laying down I am not tachycardic. I suspect if put on a treadmill at snails pace the result would surprise others but not me!

fuzzpig Thu 22-Nov-12 10:52:53

Also forgot to say, he told me I was over breathing (hyperventilating) when I was getting the tachycardia, I had to slow down and hold my breath for a bit. It did actually help a bit.

Solo Thu 22-Nov-12 16:53:31

Oooh! interesting! I don't drink enough and I don't add salt to anything and haven't for about 11 years...

Grockle Thu 22-Nov-12 18:10:00

I'm glad it went so well Fuzzpig, it sounds really positive. Interesting about the salt & water. I don't drink nearly enough.

I've finished my working week. I felt dreadful this morning and sat in an empty office for 5 mins, only to be woken 45 minutes later by my head of department shock I've spoken to our HR person to let her know I am really finding this very difficult. She said what I expected, which is that she can't do anything really other than maybe swapping my day off from Friday to mid-week so I have a day at home to recover. I am not sure that will help = 1 days i not enough to recover from 2 days at work and it would mean losing my weekend in recovery time too. I wish DP was working so that I could have some time off & not worry about bills. I'm terrified of not having an income but my work is making me quiet unwell.

Sorry for ranting about my own stuff all the time blush I hope you are all ok.

fuzzpig Thu 22-Nov-12 19:20:02

I'm planning to make fairly simple changes salt wise, I am still paranoid about going over 6g a day confused - but I can do things like getting salted butter instead of unsalted (I much prefer salted lurpak but always felt guilty for buying it before!), and swapping sweet snacks (of which I have too many) for things like crisps, crackers and peanut butter etc. It will be really interesting to see if it makes a difference. I'm going to get 2L bottles of water as well and make sure I finish one a day.

He also asked about caffeine, I don't drink tea or coffee which is good, and try not to have much Pepsi, but he did say there's a surprising amount of caffeine in chocolate (as well as another stimulant) so I have to cut down on chocolate <wail>

I have arranged to go in to work tomorrow (after I see a psychologist about Aspergers - busy week!) to discuss things properly, I am really not sure what this all means with work sad

Glad you are done for this week grockle. Is there no way DP can pick up a part time job?

Grockle Fri 23-Nov-12 14:49:52

I eat caffiene & salt (I know I shouldn't) - I had a salt & caffeine free diet when I was first diagnosed with Menieres disease but it didn't help (although that could be that I might not have MD anyway if the symptoms were part of the fibro/ CFS).

After my 3 1/2 days at work this week, I went to bed at 6 and have only just woken up properly. So, I've lost my day off & I still feel yucky. I don't see how this is feasible really - I work & I sleep. I also want to spend time with my family. I don't think my life should be like this. What can I do? Ideally I'd have a term off work then go back doing 3 days a week for a while before going back up to 4 days. I don't think my phased return was helpful because it all happened too fast.

DS has been assessed by Young Carers and got the highest ever score on emotional problems so is now being seen once a week so they can support him. I feel awful sad

How did your discussion with work go, Fuzz? WHat about the psychologist.

I don't know about DP, he talks about getting a job but does nothing about it. Also, he's my main carer and if he went back to work, he wouldn't be able to run the house so it'd mean much more work for me.

fuzzpig Fri 23-Nov-12 18:58:31

But if you could stop work or cut down you might save enough energy to still do a bit of housework while recovering? While I've been off sick I've managed to do a little laundry, meal prep etc, as opposed to burning out at work and doing absolutely nothing at home.

Anyway... psychologist turned out to be a psychiatrist instead. As I suspected, he said my behaviours/symptoms were caused entirely by the abuse I suffered despite me saying they started before the abuse! <facepalm>

I managed to be assertive and insisted on talking more about my symptoms (basically before this he was just reading through my psych notes from 10 sodding years ago!) and he finally conceded that I have had problems from a very very young age. However, while he says there is a small possibility, he thinks I don't have Aspergers, he thinks I have OCD! shock

So he is going to refer me to a psychologist, to talk further about this, and possibly get treatment (they will liaise with st barts so as not to overlap), so a positive outcome in a way. I still think I have AS though, whether or not I also have OCD (there is overlap between the two so not impossible to have both). He actually said the 'burnout' (ie CFS!) might be caused by exhaustion from the OCD behaviours. I felt pretty much ripped to shreds after an hour with him.

Then I went to work to see my manager, talked a bit more about returning to work. It feels totally hopeless. I am going to see my useless GP next week and get another sick note. If I want I can go back for a 2 week phased return and then full time. Turns out redeployment is actually really difficult and so I would be very likely to just be dismissed eventually. Fuck sad sad sad

fuzzpig Fri 23-Nov-12 19:00:46

I keep switching from feeling I am ready to go back sometime next week, to feeling that I will never be able to go back there.

Grockle Fri 23-Nov-12 20:13:52

Oh Fuzz, what a day sad

The psych sounds unhelpful... it's impossible when they don't listen. Good that he's referred you on though - at least that might help OCD/ Aspergers type problems. I was assessed for OCD a while ago and was told I don't have it... what they don't know is that I lied through my assessment so as not to be labelled (massive custody battle going on at the time with everything used against me so I didn't want more to add to that) but I am certain I do have it.

I don't know how you find a balance with work/ home. My work told me that I either have to do my current hours or permanently reduce them. I think that is probably where I am heading. I didn't know redeployment was so difficult.

smilingthroughgrittedteeth Fri 23-Nov-12 20:25:23

I have an appointment with a gynea on 10th December am shocked its happened so quickly only saw gp on wednesday!

Spoke to my boss today and we have decided to continue with 3 days for the next 6mths, her boss has agreed to it for as long as needed so our plan is 6mths of 3 days then for another 3mths after will do 3days and a morning then hopefully back to 4 days.

I'm still struggling with the 3 days but its getting more managable as long as I rest during the day while the children are at school.

DP still does most of the housework and my mum is still doing the horses most days, I'm trying to take over slowly but it really is baby steps so my week is like this....

Mon- work 7.30 - 6.30

Tues - work 7.30-6.30

Wed- day off (washing and sweep floor)

Thurs- work 7.30-6.30

Fri - day off (horses in afternoon)

Sat- horses in afternoon

Sun - rest

Its pathetic but is more than I could manage 3mths ago

belleshell Sat 24-Nov-12 04:33:55

oh grockle, fuzz smiling.............

i have out more spoons on my santas list i will share if i get them!! Grockle, dont blame your self for all Ds emotional problems like you said you had a trerrible custody battle.i sometimes think we dont realise just how much kids take these things in, and if you havent been well he is probably scared !!! so see this as a postive in put not a negative, also cant you apply for carers allowance for DP, or maybe DP could look at a part time xmas temp job to take the strain off a litlle. i am seriously considering reducing my hours, things (money wise) will have to tighten a little bit more if that is at all possible..we have booked a holiday abroad in summer so i need to pay for that. i am doing a course atm in my own time, so i am having 1 day off a week as study (sleep leave!!) once that is complete i will lose that day i think i will have todrop hours from then. Fuzz...... wow what a week you have had, lets hope that 2013 starts in a good way and you get the supoort you need to improve things. Smiling...07.30-18.30 that in its self would finish me off. yesterday i didnt get up till 13.00 and then snoozed most of im up with leg pain and supposed to be going on a day of xmas shopping that i an dreading anyway

oh well have a god weekend ladies


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