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

(994 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.

out2lunch Fri 03-Aug-12 20:03:29

don't take any more crap grockle - get yourself referred and diagnosed asap things then get easier and it will give you peace of mind

i feel your pain and know exactly where you are coming from - will pm you my story

fuzzpig Fri 03-Aug-12 21:29:45

I hope you get the referral. I have only realised this year just how dependent we are on doctors' personalities - whether they are willing to listen or not for a start. It seems like a lottery.

Should go to bed now but it seems pointless as I won't feel any better. It just feels like I'm lying on blocks made of iron rather than a mattress.

I feel like a fraud posting here as really it's not being going on that long (I guess gradually getting worse over the last 6 months or so, but I can't be sure exactly). 3 years seems unthinkable, I'm really sorry you're going through this. x

fuzzpig Fri 03-Aug-12 21:39:34

I just had a look at that PDF and noticed Cushings mentioned on it - I am being tested for that, although the doctor did say it is extremely unlikely and is more of a formality. Apart from that it's only been regular ones like iron and thyroid - should I be asking for specific blood tests or will they just laugh at me?!

I'm a bit scared of that... thankfully my current GP is nice. But the fear is there that somebody will just say to me "don't be silly, you're just unfit".

Grockle Fri 03-Aug-12 22:25:41

Thanks Beatrice, We DO have a CFS clinic so there may be some hope but I can't be referred there yet. I'm not looking for a cure, I'd just like to know what it is & what I can do to make it easier. I am also a teacher & I have been unable to manage. I've gone to 4 days a week but it's too much. I'm currently walking with a stick which I cannot do at work.

I will see what happens with the private rheumatologist, then ask my GP to refer me. I'm so tired of fighting for everyghing! I know what you mean about bed - I'm tired & achey but I know I'll feel the same in the morning.

Don't feel like a fraud fuzzpig - I just hope you get help more quickly than I have.

CFSKate Sat 04-Aug-12 19:36:23

There are many possible causes of tiredness/fatigue, and there are a number of different definitions of ME/CFS, some of them are fairly worthless.
The best are probably the Canadian Criteria, or Canadian Consensus Document,
I linked to a short version earlier in the thread, here it is again. www.mefmaction.com/images/stories/Overviews/Canadian_ME_Overview_A4.pdf

Doomfinger there are some children's guidelines for ME, I don't know how useful they are.
www.iacfsme.org/Portals/0/pdf/pediatriccasedefinitionshort.pdf

www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

voicesfromtheshadowsfilm.co.uk/

BeatriceBean - "not to use the manic evening energy I got but to take it as a sign I was overtired"

Do you think that could be anything like the adrenalin rush in CFS patients described here?
www.prohealth.com/library/showarticle.cfm?libid=16085

Grockle Sat 04-Aug-12 21:12:30

The Canadian one is very useful & quite detailed. I've been out today - nothing particularly exerting - and have begun to notice a pattern. On a good day, once I get over the stiffness in the morning, I can keep going til about noon. If I walk with a stick to lean on, I can manage another hour or so but by 2, I've had enough. My legs ache, everything hurts & I feel ready to lie down.

I have 2 weeks without DS and am going to try to work out exactly what I can manage. I am meant to be going on 2 holidays to the countryside with DP & the dog - we were going to do some walking that we can't do with the DS's because they can't manage more than 4 miles but now it seems that even on a good day, I can't manage more than that either!

Grockle Mon 06-Aug-12 23:34:00

I'm at the end of my tether...

How do you get a GP to listen and understand when you say you are in pain? It's not like a little headache, it's constant labour-pain type aching in my back and hips. I can't walk without something to lean on. I feel so limited in what I can do. I'm on solpadol & amitriptyline but it isn't helping. I'm so very fed up with constantly complaining and whining at my GP but I just want the pain to stop. Without doing anything drastic, what can I do? sad

BeatriceBean Mon 06-Aug-12 23:49:28

Oh Grockle sad It's so hard isn't it? Can you go to a different dr at the practice? Different GP?

Have you listed symptons/dates? Suggested you want to be referred to CFS clinic? Perhaps take someone with you who can say, "I'm really worried about Grockle, she's not one to complain but this has knocked us for 6"?" Rightly or wrongly I often point out I used to be part of a rambling group pre-illness, and emphasised that I was scared and needed to know what was wrong.

My initial doctor made me feel a complete fraud and I needed his sick-notes to keep me off work. I was so scared of coming across as a hypochondriac. (That's the one that was struck off). My next doctor then had to start again with tests etc.

I do feel for you - the limbo is such a scary place to be. I don't know if you are able to access the Dorset ME support group but they have a paid benefits advisor, might be able to help with doctors etc. It's hard though if you're not sure what the condition is to assume.

Sorry I'm half asleep so a bit garbled but didn't want not to post.

Grockle Tue 07-Aug-12 00:01:45

I have listed symptoms but my GP seems unconcerned and just throws different meds at me each time. Nothing that actually helps.

Thank you for posting - I have PMed you smile

fuzzpig Tue 07-Aug-12 13:29:16

Fuming on your behalf grockle. Just not right to be dismissed like that sad

I'm also hmm about not being able to change GPs - that just seems really wrong to me. My enormous inner cynic says it seems like they'd rather stick with the status quo than risk crap doctors being highlighted by patients switching from them. But that's just me. Still, might be worth getting in touch with PALS sometime if you can face it, as it seems ridiculous that you aren't allowed to change GP.

I hope you have more luck next time. It's just so horrible that when you are feeling at your weakest you need to fight harder than ever to be listened to.

I don't know if you read the long 'mild ME' thread but I did notice a lot of people mentioned listing actual examples rather than 'just' symptoms, because pain is so subjective - for example as well as describing the pain itself, saying it takes you 30 mins to shuffle down the stairs on your bum because you ache so much. That might make them realise just how much it's affecting you. (sorry if you already did that, brain is a bit fuzzy and can't remember what I read on each thread)

Grockle Tue 07-Aug-12 13:49:35

That's a good idea. I really think my GP will think i am just being dramatic when I say there are days when I just cannot stand up straight or walk without a stick. I even bought a wheelchair so I could go on a family day out - I knew I wouldn't manage it otherwise. I will think of examples and write them down (appalling memory). I'm seeing my psychiatrist next week who is very sensible & agrees that I didn't need a psych at all (but since he is good, I want to keep him!) & was the one who suggested this might be CFS. He's the one who referred me to the rheumatologist again and asks about ALL my symptoms. Maybe he can prescribe something for the pain? My GP tends to focus on ONE thing and tries to deal with that but I really think they are all linked.

Thank you for the support. I'm feeling really miserable at the moment & dread waking up each day sad

belleshell Tue 07-Aug-12 14:23:37

Hi Grockle, hang in there, it took me 8 years to get a diagnosis, after having every test done and been told it was all in my head... its 2 years now since i was diagnosied and as much as i am glad i have a diagnosis, it is still chuffin hard to live with. i am a nurse, and all my close friends are nurses too, but i feel they just dont get it. i have been signed off this week for 2 weeks, i guess the family holiday we have just had where i did nothing till 11 ish and i was back in bed by 8pm was still too much. a close friend asked if i was knackered and to get some rest....if only it was that easy....resting when in pain doesnt really happen, brain fog, constant headache sore throat, constipation, insomnia sweats....and they are just the physical symptoms...but at least i know what it is and i know what i need to do, doing it is the hard part. Have u contacted the clinic direct or even looked at a private referral. good luck. xx

Grockle Tue 07-Aug-12 14:34:00

It didn't occur to me to contact the clinic direct but I looked at their website and you need a GP referral. Since mine won't refer me til I've jumped through hoops seen the rheumatologist again, I'm trying to get that done as soon as I can.

So sorry you are finding things so exhausting. It's a nightmare, isn't it?

Tomorrow I am going to a health spa, with a book. Only for 1 night but it means I can do nothing but relax and not feel guilty about sitting down. I'm SO looking forward to it. I just hope I can walk properly!

magso Tue 07-Aug-12 14:39:30

Grockle I am so sorry you are unwell . I had trouble getting my GP to understand just how unwell I have been and I too was sent to a psch. That really upset me!! The psch wondered if I could be having panic attacks ( I am utterly sure I was not!!! - I just could not stand up and stay conscious sometimes!) I was eventually diagnosed with CFS after seeing the lead professional (the thyroid specialist in our area). The CFS clinic will not see patients without a diagnosis. My GP openly admitted she knows very little about CFS/ME but I supplied information ( including what to rule out) and found out who I needed to see etc and eventually was referred on and diagnosed. I also found that one of the other GPs in the practice has some knowledge (they all seem to have special interests) so it might be worth asking your GP( or one of the others when seeing the childrens GP) if he has a collegue with a special interest in fatigueing illness.
I use walking poles quite a lot, and have made lots of mini changes to the house to try to make life less energy consuming. Our whole family has had to adapt. The CFS clinic so far has worked on getting me to stop as soon as I get wobbly or slurred speech. At first I thought they were unrealistic (I am always wobbly- and what mother can just stop?)- but little by little I have got slightly better - mm by mm rather than leaps and bounds.
I think the things that have helped me most so far are nutritional support ( similar to Dr Myhills advice), pacing, talking to people that understand and, and lastly I think being able to breath better (after getting my asthma and rhinitis properly treated) may have helped.
Must rush hope you get support soon

Grockle Tue 07-Aug-12 15:55:59

Yes, the slurred speech! DP laughs at me when I'm really tired - he says I'm as funny when I'm tired as I am when I'm drunk... I can barely talk, fall over & flap my hands a lot whilst pointing at things to try & get my message across blush

Those of you who have changed your diets, what have you actually done. I've read about the Stone Age diet on Dr Myhill's site but it is confusing (or I am not very clever...)- no dairy, no wheat, no grains, no carbs, no berries? But then it says for dinner to have berries & potato confused

I am vegetarian so if I can't eat dairy, grains, carbs or meat, it leaves me with salad, nuts & apples & not a lot else.

belleshell Wed 08-Aug-12 07:33:55

has anyone one suffered with weight gain! since my diagnosis i have put on 2 stone, and it just wont shift. i have joined slimming groups and get no where. i know i really need to exercise more but i just cant, a bike ride with the kids last week on holiday put me in bed for a day ( i went 4 miles down hill!!!) i am desperate, but cant seem to shift it. i eat alot of fruit, i have porridge or 1 slice of brown toast with a banana for breakfast, its usually a salad or maybe pasta or cous cous for dinner and then whatever for tea. i have tried reducing portions, etc.......its just another chuffin curse of ME! how does everyone else get on!

Grockle Wed 08-Aug-12 08:20:31

Me! I began putting on weight when I was barely eating anything. It didn't make sense - I was at my usual activity leve so I'm not sure why I started gaining weight. I've probably put on a stone but I daren't weigh myself. My ability to do anything physical has dropped but I'm still not eating loads - cereal for breakfast, fruit for lunch, piece of toast or more cereal for dinner. I woud guess that I'm still within healthy range for BMI but teetering on the edge of being overweight.

I feel quite fat and lazy.

stressedHEmum Wed 08-Aug-12 09:21:09

Me. I've put on about a stone and a half over the last 18months (and I was already fat), even though I eat far less than I used to and have completely given up alcohol. My diet is pants, though, because I can never think of anything that I actually want to eat and I often am far too tired to cook myself a decent meal, after having cooked for everyone else (I'm the only veggie in the house).

I need to exercise more but I just can't. A walk to the park the other day put me flat on my back for the next 3 days and even getting through the day is usually too much for me, so I don't know what to do about it.

fuzzpig Wed 08-Aug-12 09:41:41

I was fat to begin with too, but since I started getting these symptoms (and having looked at the other thread linked to here, it was about 15 months ago) I have maintained weight - which is ok but considering how much more active I have been and how much less I have eaten (both due to being at work, my job is fairly physical) I would have expected to lose a bit - I am on my feet all day and don't eat for comfort or boredom anymore.

Saw the doctor yesterday BTW, after some exhausting muscle tests he said it is viral myalgia and I have to go back in a couple of weeks. I need to tell him that I have had these symptoms for much longer (forgot to mention it yesterday, damn fog). I do agree with what he said though, it has to be a virus thing because it only got dramatically worse after having the chest infection, but that doesn't explain why I'd had the same problems for over a year before that. Maybe it made me more vulnerable to this illness or something.

mercibucket Wed 08-Aug-12 10:20:11

If you are veggie, would you be willing to compromise that for your health? I used to be veggie, I did read once that it's more common to get thyroid probs (which I have) on a veggie diet. Anyway I changed to a high protein diet with fish and chicken and do feel healthier for it. If not, I do think it's really important to work hard at a healthy diet if veggie and ill. It's so easy to fill up on carbs n cheese.

Grockle - did you check all your blood test results yet? With the weight gain as well it could be a thyroid problem. We let people suffer for years in the uk when they would treat in the US

stressedHEmum Wed 08-Aug-12 11:12:00

Merci, I don't know, tbh. I've been veggie now for over 30 years, I don't think that I could actually tolerate meat anymore. I had a really good diet before I was ill but now, I'm just too tired and sore.

I've actually had to change even the way that I cook because I can't stand long enough to chop, grate etc, and anyway, it makes my hands and arms to sore. So now I do things like use bags of ready chopped veg, grated cheese, frozen mash for the tops of pies, all sorts of things that I would never have even contemplated before. I am so fed up of the whole thing, it's affected every single area of my life, and the family's because I can't go anywhere or do anything without suffering for days afterwards.

ArthurPewty Wed 08-Aug-12 11:35:01

Message withdrawn at poster's request.

fuzzpig Wed 08-Aug-12 12:19:01

(((stressed))) sorry it's so crap.

There are other foods good for protein aren't there? I'm rubbish with nutrition etc but I thought stuff like lentils were good?

I should look into it more TBH, I have gone off meat a bit lately as it makes me feel sick (had so many random aversions that I even wondered if I was pregnant) so I doubt I'm eating right. I picked up a thick pamphlet in the pharmacy yesterday all about vitamins/minerals so I'll give that a read too.

Nutrition is such a bloody minefield though - you only need to read MN to see how much conflicting information is around! It's hard enough when you're just trying to work out how to feed your children, but surely a lot worse when you can barely find the energy to cook. Most times even ordering the shopping on my phone wears me out.

I sympathise about getting the prepared food stressed - I feel silly paying more for it but something's got to give. DH was a chef for many years but he is struggling to cook too (prolapsed disc) so we are currently trying to find the balance between convenience, health and cost (let alone taste!) and it's not easy. thanks

belleshell Wed 08-Aug-12 12:36:22

i had fasting bloods done (again )last month at 8.20 am all normal!! including all thyroid bloods...so it isnt thyroid...i have just taken the dog for a 10 min slow walk over field and back, all i could think is cant wait to get home.... i used to go to gym 2 twice a week as well as working and having 2 small kids. just wish i had half the energy i used to.... god i must stop moaning...sorry

ArthurPewty Wed 08-Aug-12 12:55:13

Message withdrawn at poster's request.

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