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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.

ekidna Wed 11-Jul-12 22:35:13

I feel for you I really do. i have a relative who eventually got diagnosed with the assistance of a family medic advocating for him.

Could you give these guys a ring-I know my relative went there- and ask for advice on how to get diagnosed.

http://www.nmec.org.uk/contact.

don't give up, please. I know people love to tell their stories and they are not often helpful. but my relative did recover fully after being flat out for x years.

Grockle Thu 12-Jul-12 15:32:14

Thank you smile The link is useful and has links to other sites which akso look helpful.

I'm fed up of being exhausted and in pain & being made to feel like a hypochondriac. I have a lovely DP & supportive family but I feel very alone sad

RockinD Thu 12-Jul-12 19:13:18

I was diagnosed with CFS three times (two consultants and a GP) before I found a consultant who treated my ferritin deficiency, my Vitamin D deficiency and my underactive (possibly hypopituitary) thyroid.

CFS is a dustbin diagnosis - the NHS's own information leaflet says there is no diagnostic test, an infinite variety of symptoms and no treatment. There will be something underlying that it causing your symptoms, probably on your thyroid/adrenal axis. They are supposed to rule everything like that out before diagnosing you.

Have you had any blood tests done? Do you have an auto immune condition?

D

mercibucket Thu 12-Jul-12 19:23:00

Hmmm well dsis got a diagnosis v easily with no blood tests at all. Or - in other words - the GP couldn't be arsed finding out what was wrong! Turns out to be a wide range of things we are still getting to the bottom of but also vit d deficiency and iron/b12 deficiency. New GP is sending her for a range of further tests
I suppose what I'm saying is - don't stop trying to get to the bottom of it! CFS can be a dumping ground. Was your tsh (thyroid) well in range btw ie under 2? And did you check all the other test results yourself eg ferritin should be well into 50's or more, b12 over 500. Often these are called 'normal' at a lot lower levels. I also like Dr Myhills website for info on cfs and diet advice etc.

mercibucket Thu 12-Jul-12 19:23:00

Hmmm well dsis got a diagnosis v easily with no blood tests at all. Or - in other words - the GP couldn't be arsed finding out what was wrong! Turns out to be a wide range of things we are still getting to the bottom of but also vit d deficiency and iron/b12 deficiency. New GP is sending her for a range of further tests
I suppose what I'm saying is - don't stop trying to get to the bottom of it! CFS can be a dumping ground. Was your tsh (thyroid) well in range btw ie under 2? And did you check all the other test results yourself eg ferritin should be well into 50's or more, b12 over 500. Often these are called 'normal' at a lot lower levels. I also like Dr Myhills website for info on cfs and diet advice etc.

ekidna Thu 12-Jul-12 19:25:31

You are NOT a hypochondriac. People who think this or make you feel it are twats. Fantastic you have a supportive family.
Surround yourself and reach out (whenever you are able) to positive, warm, empathetic people. You only need a handful.
As I understand (disclaimer)----There's a lot more research now into ME/CFS, and although there are no conclusive, conclusive agreed diagnostic tests they have found evidence of patterns in brain scans etc.

Grockle Thu 12-Jul-12 20:52:23

I've had loads of blood tests done. The inflammatory bit comes back a little high sometimes but not consistently & everything else is fine. Thyroid etc all ok.

I think I now just want a label to help me cope. I know I am not right but at the moment, all I can say is I'm tired all the time. Well, most of us are, aren't we? It sounds a bit rubbish. If I had a name for it, other people (& work) might be more understanding or tolerant and I might be able to work out what to do to help. WIll look at website suggested, thank ou.

RockinD Fri 13-Jul-12 12:12:18

Nothing wrong with having a label, but you owe it to yourself to have the right label.

If the doc says all your blood tests are 'fine' it would be useful exercise to get a print out of the results and do some research yourself. You may be surprised.

As merci says, your results need to be at or above certain levels within the magic reference range. Being in range is not enough - they need to be optimal. You will note that her sister and I were both diagnosed with CFS when there were other, fixable things wrong.

Please don't be too hasty - if there is something underlying and it is not treated you will get worse, not better and certainly where I live there are no support services for anyone with a CFS diagnosis - you're on your own mate!

D

CFSKate Sat 14-Jul-12 17:40:15

investinme.org/ Invest in ME - good starting place to get ME research information - yearly conference presents latest research. They also have a facebook page.

Grockle Mon 16-Jul-12 07:45:10

Thank you - that link looks helpful. I'm going back to work today but am ready to fall asleep already sad <pathetic>

aliasjoey Mon 16-Jul-12 18:42:57

grockle I'm in a similar situation to you. My blood tests (including thyroid, ferritin, B12 etc) have come back normal. Still waiting for Vitamin D results, but fatigue as a main symptom isn't normally associated with Vitamin D deficiency.

CFS can't really be diagnosed because there isn't a test for it; all the docs can do is rule out anything else it could be. My GP didn't actually mention CFS but I could tell thats what he was thinking (and he reassured me it wasn't all in my head!) talked about mitochondrial cellls - I didn't understand a word!

What's confused me, is I seem to have a 'mild' case (I didn't know there were different levels of severity) so I hope it doesn't get worse. Also I don't know if I should tell my work - it doesn't really affect my job, except sometimes I feel very forgetful and lack concentration. Will they just see that as an excuse? Or should I keep quiet and book a days annual leave every few weeks to recharge the batteries?

Sorry, I'm no help - I've asked more questions than answered them! But at least you know, you're not alone...

It took four years for my diagnosis of CFS. Until I has a GP who understood the condition and ordered the right tests. I have lived with it for 12 years and counting.

I was query CFS last year but it turned out to be post viral fatigue - default diagnosis as I got better. The tiredness is just overwhelming though, at my worst I would walk DD to school (normally five minutes) and then have to come home and sleep for an hour. But I got better.

What I did find useful was downloading some of the guides on the ME Society website and the other charity, can't remember the name. There are three evidenced treatments - pacing, cognitive behavioural therapy and graduated exercise therapy. Pacing made sense to me and I've become much better at not pushing myself so hard.

Get your GP to refer you to a hospital-based CFS service. There's not many in the country so you may have to travel. To be referred you have to have lots of tests to rule out other things so can be a good way to find out if it's something else.

CFSKate Tue 17-Jul-12 09:32:31

I think if you have mitochondria problems then you have to pace - there's lots of links to mitochondria information on this thread

www.mumsnet.com/Talk/general_health/1105040-Could-I-have-mild-ME

Grockle Tue 17-Jul-12 19:09:22

Thank you all. I've gone back to work this week after 4 weeks off but I'm struggling. Tomorrow is my last day & everyone keeps saying 'only 1 more day' but that makes me want to cry... it's yet another day for me to struggle through. My useless GP diagnosed depression, which I now have too but I've had the physical symptoms for 2 years and have constantly been dismissed. I just feel at the end of my tether. I don't want to live like this.

I did mention it to work today because the HR person commented how bad I look hmm

I will read the other thread.

Thank you so much for your support. I feel like I'm whining & moaning - everyone thinks I'm ok because, physically I am and there's no way of describing just how terribly tired I am & how much I'm struggling.

ekidna Wed 18-Jul-12 16:58:15

Bless you.
When you have recovered-ish from last day maybe think about getting a very gentle strategy for diagnosis together. e.g. this might start with changing doctors. Try hard not to beat yourself up about moaning. It is okay to express how you are feeling, and it takes too much energy away from your recovery to beat yourself up. xx

Grockle Wed 18-Jul-12 20:01:46

Thank you. I will change GP, definitely.

I'm so shattered today, my legs feel like jelly. I had to dig the crutches out of the shed so I could shuffle over to take DS to swimming. I went at a snail's pace which didn't go down well. I was terrified that my legs were going to give way (I collapsed about 6 weeks ago). I feel so ridiculous because there isn't actually anything wrong hmm

Grockle Thu 19-Jul-12 11:39:49

Oh, my surgery said you can't change GP within the surgery. I can either request to see someone else or go to a different surgery. Not sure what to do. I just want someone to listen and help me.

aliasjoey Thu 19-Jul-12 11:42:50

that's a bit weird..?! can you you just request an appointment with the GP at the surgery?

I have been prescribed Mitrazopole which is an anti-depressant, but it seems to be helping a bit (especially with sleep)

I have also booked a proper holiday for the first time in ages!

mercibucket Thu 19-Jul-12 13:16:02

Did you get printouts of your test results too?
Sorry things are not going well atm. Did the surgery just mean you are registered with a particular GP but can request to see any of them?

Doomfinger Thu 19-Jul-12 13:29:39

I've been vaguely diagnosed with fibromyalgia (long term PGP, bruises on my spine that haven't healed after 7 years and the big one was the week I couldn't get out of bed for breastbone pain) I was fortunate that being under rheumatology anyway in pregnancy I saw the right people the week I was bad.

This year my 6yo has been diagnosed with CFS. She had gastro, never really got better, treated two consecutive weeks for a chest infection then ended up in A&E with pneumonia on the third week. Fortunately she's already under a paediatrian (and the best) so he called her in ASAP and diagnosed her. I'm hoping she recovers from it and hasn't got FMS.

Grockle Thu 19-Jul-12 19:27:35

I didn't get printouts of test results because I only saw the receptionist - I popped in on my way to physio. But yes, I can see a different GP but have to remain registered with the one I have. I don't understand why or even what it means.

I'm so sorry your DD is so poorly Doomfinger. At least it's me and not DS.

I'm currently on amitriptyline with diazepam & codeine for my back but it's more painful than ever. I've figured out that if I use 1 crutch, it gives me stability & security and is easier than using 2. I've just ordered a walking stick sad and tried out a wheelchair today. I am only 34 and there is, apparently, nothing wrong with me, Yet I am scared of going out because it makes me feel so ill.

aliasjoey Thu 19-Jul-12 20:47:40

grockle

There are five GPs at my practice, and we can make an appointment with any of them (or indeed a locum if one is away) Sometimes a GP will specialise in a particular area eg. diabetes, so it makes sense to see them. Otherwise you can usually see any of them, especially if you need an appointment urgently.

In fact recently I tried to make an appointment with 'my' registered GP and was told I'd have to wait 2 weeks! I got an appt the same day with another one. So, try one of the others in your practice (maybe a younger, more up-to-date one?) and see if they are more helpful.

I'm starting to find out that the anti-depressant that has been prescribed has a very common side-effect - increased hunger. sad I feel constantly hungry.

mercibucket Thu 19-Jul-12 20:54:11

Very sorry your dd is also ill, doomfinger

Wrt test results, the receptionists always give me mine either by phone or as printouts. Some practices say the GP has to agree first. In fact, you are entitled to all your records and noone can refuse as it is your data. They can ask for a small charge up to 10 pounds but I'd be scathing of any practice that asked! Anyway, that's just fyi in case you have prob getting them

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