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.

Assessment didn't happen!!! waited an hour and then they cancelled it.

Doing some decluttering today, didn't really have a choice as my parents visited and they brought loads of stuff, and we are going to the tip later, but I'm really worn out.

DS has his first day at nursery tomorrow!

How annoying Fuzzpig.

I had a group of elderly people round for afternoon tea today and i realised that on a bad but not terrible day, I hobble like my 102 year guest. I'm like her now - what will I be like in 70 years?

I'm not sure what my amitriptyline does, if anything, but I take it religiously for fear that I'll feel even worse if I don't take it!

Hope you're feeling better today grockle and that work was ok. Sorry about the hobbling :(

I am coping a bit better with work now although today DH and I then picked up the DCs and it has totally wiped me out.

Trying to figure out the 6 weeks recovery period for DH's operation, so working out work times, school runs etc. Think I'll need some help with school runs when I'm off as I don't think I can cope with 3 lots each day, but I don't know if anyone will be willing to help out if I am actually at home anyway, IYSWIM.

oh no fuzzpig have they rearranged assessment. i cant believe they let you sit there an hour before cancelling!!!!!

bye the way what does IYSWIM mean??

I know, I hate being so unassertive, I wish I'd had a go at them about it because they deserved it, but I just went outside and cried instead :( they are going to send me a new appt at some point but I don't know how it'll fit in with DH's operation especially as they are moving premises next week to somewhere really hard to get to.

Trying to relax this evening as the walk home has really done me in, DH is out at DSD's school thing and I've put the DCs to bed, they have really played up tonight and I shouted at them so often my throat hurts :( when I feel like this I have no idea how I'm going to cope while DH recovers from surgery.

IYSWIM - if you see what I mean :)

Right - 2 days of work this week & I hurt. I'm in bed already. I have turned into a horrible person, I am grumpy (pain & tiredness), snappy, irritable and miserable. I always used to be able to deal with feeling overwhelmed as I was so motivated to do my job well and have boundless energy but now I am ready to hand in my notice. I can't just quit my job but I really think it is making me ill.

Hope everyone is feeling ok.

Fuzzpig, do you have family around? You have an awful lot to deal with.

Oh grockle :( ((((hugs))))

Any chance this is just a temporary feeling, as you are adjusting after summer? It must be a real shock to the system. But I guess your job is demanding enough for a healthy person let alone someone battling CFS. Does your manager know you feel like this? Is there a chance of being transferred to something else?

Sorry will stop firing questions at you now. No, no family around really, not many friends either, amazingly my parents are going to come up a few times during the recovery period though which is a real relief.

I nearly gave up and stayed at the pharmacy today as I was exhausted after work and doctors appointment and couldn't face the journey home. Glad I had my bus pass. Immunology results were clear by the way so I guess that means CFS is a more likely dx. New doctor is nice and asked lots of questions although I was too tired to answer them really as they seemed a bit pointless (ie because I already got referred). I also have my amitriptiline at last so I will be trying it tonight.

Hi everyone, Is it OK to join your very supportive thread please? I've been off work for 7 weeks now with what I think is either PVSF or CFS. I've lurked for some time on the thread and am amazed at how you all manage with young families and work. I started with a simple water infection (no pain, just felt tired, nauseous, shaky) and was then put on 2 lots of anitbiotics to clear it which just exacerbated the symptoms hugely (and didn't completely clear the infection). I'm lucky in that my children are teenagers and can fend for themselves but I'm still adjusting to how my life has changed radically in a short space of time. Feeling a bit lonely and isolated. Hope it's OK to vent as I don't feel my circumstances are as difficult as some on here. But very frustrated at the length of time between GP appointments and the puzzled expression on her face each time I go.

Hello cupa :)

What's the doctor doing for you, are you having blood tests?

(((((((((((HUGS))))))))))

welcome cupa, this thread can be a life line at time. im so sorry to hear you havent been well, and we all cope cos we have to which is shit in this day and age!

Fuzz, at least with bloods things arent quite so clouded and i am so glad new GP is ok! how was amitriptyline, it may take a while to get into system, but certainly helps me when i take it, think is im fit for nothing when i do so dont take on a regular basis.

Grockle.... i hear you 100%... last month i was ready to quit too, but i love my job, i have given up so much because of my ME and this is the last little thing im clinging onto, not only that i cant afford not to work....if only the benefit system was fairer, id love to work reduced hours, and im sure my symptoms would be better and thus making ME manageable, but im entitled to nothing!!!

so once again (((((((HUGS)))))))) to all
x

Hi Fuzzpig, Thanks for the flowers Besides water infection, GP thinks I've also had something viral. Had 2 lots of blood tests. First lot normal, second lot normal except for elevated white blood cells which the Receptionist says the GP has written a note beside saying 'normal for you'. So not entirely sure what that means. I've made another appointment with my GP next week to ask about it and after reading excellent advice on here I will also ask for a printout of my results so I can Google and scare myself a bit more.

Thanks for the welcome Belleshell. It's great to have support. I'm in awe of the fact that you all manage to work. I can barely make it up the stairs and think I'm having a good day if I can do the ironing and help make the tea (wimp emoticon). In my other life (7 weeks ago) I taught adults part-time and smiled a lot.

raised white blood cells indicate infection, so that might be why GP wrote normal, anything over 10 is abnormal. In my previous life i was life and soul now im party pooper!!!

Welcome, Cupawoman. Sorry you have to join us. Do you have any support?

This might be temporary with me but it is getting progressively worse - I can't stand up straight & my legs feel like lead weights. If one more person says 'are you limping?' I might cry. I couldn't get my words out this afternoon which is a problem when I work with people with communication difficulties. I need a sitting down, office job where I don't have to talk to anybody!

Yes the 'normal for you' thing is probably because he expected you to have an abnormal result given your recent infection. On my recent tests I had two bad results - low red blood cells and high ESR (something to do with inflammation?) - but wasn't concerned about either of them as they both are to be expected following illness, and I'd had a chest infection for several weeks. So the test result is not normal usually, but is normal at the moment for you.

I was wondering if the doctor had mentioned CFS or PVFS to you, or if you'd mentioned it to them, or if you are thinking about it yourself before approaching the doctor? They wouldn't diagnose CFS yet as assuming you were healthy before, you haven't had the symptoms long enough (minimum 4-6 months I think?) but they should be able to diagnose post viral fatigue at least. Are work treating you well?

I am plodding on at work, have also found out DS has got extra nursery hours during DH's recovery period, we were just planning on using them for when I go back to work, but we are now considering putting him in there for my 3 weeks annual leave too, because I don't think I can cope with 3 school runs when DH is completely incapacitated. It's going to cost nearly £400 for five weeks which is nearly half our ISA but I think it'll be worth it as I'll get a rest during the day. We've also been talking about the future of our jobs, as I really don't know if I will be able to cope full time, but due to DH's operation I am not going full time again until after half term, and so I am trying to forget about it until then.

Hi Grockle My parents live about 16 miles away but are elderly. They have both had their own illnesses to contend with over the past few years but are good at the moment (fitter than me right now for sure and my dad is in his 80s). DH very supportive but working away this week so I have felt slightly panicky especially on a morning when I seem to be much worse.

Hi Fuzz, No the GP didn't mention CFS. You are right - it would have to have gone on for longer than this. I've been signed off work for the past few weeks and so far they have been fine (watch this space). GP just keeps writing viral on my sicknote. I'm the one who thinks it might be turning into PVFS as I seem to be getting worse not better.

What job do you do Fuzzpig? I'm about to write my letter of resignantion, I think. I can't manage work. My legs hurt so much today & I can't focus on anything which makes doing my job impossible. I love my work but I just cannot do it atm. Not sure what else to do.

Mornings used to be worse for me too, Cupawoman - I am still very stiff & achey and need a hot bath before I can move much. Now I get worse as the day progresses to the point of needing a walking stick in the evenings.

Oh no grockle, are you sure that's the best thing to do? Read back on this thread, I think it was magso (sorry if I'm wrong) who said she really regretted quitting her job. Who is your employer, is it the council? There must be occupational health or something, they might be able to make adjustments or find you another job? Can you get signed off for the moment? It might force your doctor to listen to you as well.

That's what I'm banking on - I work for the county council as a library assistant. So not mentally demanding or pressured but physically quite hard as there's a lot of lifting, pushing, standing etc. If I can't cope in the long term (I'm waiting until after DH is better before I decide) I can either apply for a reduction in hours or be redeployed to something desky.

I saw a Dietician this morning at my GP surgery in hope she could offer some advice on the best foods to eat (I already eat pretty healthily but thought I might be missing something and wanted a professional opinion). When I explained about my lack of energy the only advice she could offer was to eat more sugar.

More sugar you say? :o

Today I am really strongly considering buying a couple of wrist splint things. All the joints in my hands hurt a lot (some more than others).

Just got back from work and now have to go to school and talk about the extra nursery places. Reckon the walk back will finish me off for the weekend!

I was good at work and told my line manager the truth about how I'm feeling, but said I want to just muddle through the last week as I'm then off for three weeks anyway. Not sure if that's a good idea or not TBH.

Yes, Fuzz, more sugar (swigs from can of Lucozade). I'm bloody pleased I didn't pay for her services.

Re work dilemma ladies, it's a tough one isn't it. Mentally we need the stimulation and distraction. Practically we need the money. But physically and mentally it must be so hard. So far I've wimped out.

My job involved driving around from venue to venue carrying heavy bags/resources, then trying to motivate a group of learners to learn something. Often I'd be up at 9pm marking and preparing. I feel exhausted just thinking about it. At the time, I thrived on it.

Euwww not lucozade! I haven't touched the stuff since my glucose tolerance test during pregnancy funnily enough though I've been reading a book about CFS and it says one of the outdated theories about the cause of CFS was hypoglycaemia

Found a reasonably priced/reviewed wrist support but all of them say it's for things like tendonitis and carpal tunnel - DH reckons it won't help in my case but the pain is driving me frantic. Even things like typing make it worse. I might be going to town tomorrow if I can face it, so maybe I should ask in Boots or something? Any thoughts?

i think you are doing the right thing grockle - your health is the most important thing here

you all seem to be able to do so much on this thread - have any of you been diagnosed with ME/CFS?

i have and i can't do very much at all - nothing most days tbh

I am not officially diagnosed but my GP thinks that's what I have and he referred me to a specialist. Not sure what will happen now.

Basically I just work my reduced hours (and working at a slower pace) ATM, get home and collapse on the sofa. Yesterday DH was ill so I had to do bathtime, I am really paying for it today.

I think I've had it mildly for about 18 months, made much worse by the chest infection I had, and now while it's not as bad as a couple of months ago I am still unwell and if I could afford it I would still be off work.

I don't know what to think about the inactivity thing, so many people (including my manager) think that if you don't do anything at all you will make it worse, but I don't feel like that's true, because I'm making myself work and it certainly isn't helping!