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.

Sorry you've been ill belle.

Currently feeling guilty and wallowy as DH has been doing some (light) housework, he says he's feeling a bit better and needs to increase his activity, he has also managed to reduce his painkillers a bit so that is a good sign.

But while I am happy about that obviously, I feel like shit. I managed a WEEK of doing everything and now here I am again with DH doing more than he should be because I can't do it. A bloody week. It's pathetic and I get scared that DH is jeopardising his recovery because of me. Had a big cry because I burnt myself trying to stir the pasta sauce from the microwave, why is it always the little things that set off a crying fit?!

I am really hating myself and this stupid illness.

OH FUZZ i so feel for you i hate me and ME too, this weekend my kids have been with their dad. DP kids came sat and i was in bed, i often wonder what they tell their mam, DP said they are used to it. yesterday was the 1st day in weeks me and Dp have had some time together, once again i was in bed!

i dont know what to say, as their is nothing anyone can say.... as a nurse it is good your DH is up and about honestly, after having a heart attack people start exercise classes after 6 weeks. i did one a few months ago and it truely nearly killed me........this is supposed to be making you feel better .....gradual increased activity will do your DH good, and also make him feel better about himself too.... remeber a marriage is a partner ship, when one is up the other is down (((Hugs))) xx

Oh belle, I'm sorry you've been unwell. And that fuzz is suffering too. I'm also struggling & am at my wits end.

I can't walk. I need to go to work but I really can't. I'm not going to get paid much longer . My rheumatology apt is now 4 weeks away (instead of this week) & I am in so much pain I've been in tears. I don't understand why my GPs won't help. If I were bleeding or had broken my leg, they'd help so why not with this pain? I'm too tired to fight anymore. This isn't fair on DS or DP. The only way I can see anyone helping me is if I were physically hurt - if I chopped my finger off or got hit by a car or got sectioned perhaps? I don't know. But I know I cannot manage another 4 weeks like this. WTF do I do?

((((grockle)))) walk in clinic or urgent treatment centre? Take DP with you so he can advocate for you x

GROCKLE.....u need to go get help...what if this isnt your ME what ifi ti is something else that is making ME worse. sod your GP go to A+E. all u need to say is its suddenly got worse and now you cant walk.....this is not right, if they admit you ( not ideal) you will see the rheumatologist............please please go get this seen....

Fuzz and everyone else please take care of yourselves.......xx

I agree Grockle you need investigation now. I got to the point I could not walk ( I had a type of pneumonia that had gradually worsened over several months not ME at the time) and it was such a releif to be admitted to hospital. Having struggled and seen the disinterested GPs several times, I was suddenly treated as seriously ill and more importantly investigated and treated. I was sent to hospital for urgent investigation by my GP can your Gp do the same?
Sorry so many people ( Fuzz, Belle, Grockle) are unwell and struggling at present. I am recovering from my sinus op so a bit up and down.

Is your DC at school today grockle? Is there anyone who can go with you?

Oh, Grockle, you need to be seen, it could be anything. You could have something underlying that is making things worse. I don't know how it works in England, but I would present myself at A&E, take your husband with you to speak on your behalf.

Fuzz, try not to fell guilty, it is good for your DH to be up and about as long as he's not overdoing it.

Belle and Magso, sorry you are both ill. it really, really sucks.

I'm pretty grim at the moment as well. Spent all day yesterday in bed, only emerging to feed the kids and wipe around the bathroom so we don't get dysentery. It's pretty much my own fault, though. we had a BBQ at church on Friday night which my committee was organising. So I had to do stuff for that and now I am paying the price.

Thank you all. I had About 4 hours broken sleep last night, after my massive meltdown. DP was rather alarmed at how much I sobbed & wailed & made an urgent apt with my GP - I didn't go but the outcome was that GP is trying to get me an urgent apt with rheumatology, I have tramadol for the next week & can call & speak to the dr if that doesn't help. So, I guess that is all positive. I feel so drained but less hurty now (relief? Tramadol?) I'm on my own with DS tonight but will be ok then dP is back tomorrow. I hate having to have people wait on me but am so very grateful that DP can help out.

Sorry others are not well. I wonder if a change in weather/ daylight makes a difference?

That's good news grockle. I hope the urgent referral comes through asap!

i have joined weight watchers on line today......i am sick of having no energy, im piling weight on, and i am generally pissed of with everything today......maybe ww on line will help me focus on something other than feeling so damn fed up...........i could eat a scabby horse tonight thou!!

I've put on loads of weight too - I've not been eating much but because I can't physically do a lot, I'm not burning off calories. And because I'm too knackered to cook, I eat crisps and biscuits. I am sure that doesn't help, I know I need to eat real food but I can't face it.

I feel like a different person this afternoon - I haven;t felt myself for weeks but, although my head is cloudy & I have a little nagging ache all over, I feel awake and alive. I'd forgotten what it is like! I'm hoping that tramadol is my miracle cure!

Grockle good you are feeling more yourself and an urgent referral is in the pipeline.
I was the same weight for years but have put on weight since I got il and have changed shape. I routinely feel fuzzy and weak so I think I eat to try to get energy. Often I am too tired to eat especially by the time I've cooked for the family.
Stressedmum sorry you are struggling today too.

Someone in Chat asked me about the classified until 2071 ME/CFS files, so I am posting some links here. It's not something I know much about, just that it's been talked about in ME forums for some time.

Here is one of the files

Access conditions Closed For 73 years
Record opening date 01 Jan 2071
www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=-5475665&CATLN=7&Highlight=&FullDetails=True&j=1

an article about it
www.investinme.org/Article-358%20The%20MRC%20and%20Secret%20Files%20on%20ME.htm

I'm sorry I can't really read it (brain fog), but this bit is interesting
"in 1984, Professor Sir George Radda, as he later became when appointed Chief Executive of the MRC in 1996, had published research using nuclear magnetic imaging that confirmed a unique biochemical defect in the way energy was being produced in an ME patient"

if you go to one of the big ME forums you can probably find a discussion on it somewhere. Or maybe on the facebook for ME Association.

Hello! I didn't know about this thread.

I've had CFS/ME for 13 years now; diagnosed 11 years ago after walking through treacle and thinking I was going crazy by my GP, then Barts...

Recently I have been in a lot of leg pain; that deep pain that stops you in your tracks. I can't take Tramadol; it gives me dreadful chest pain, so I just bear the pain.
Just recently, I have been placed under huge extra stresses with the upcoming end of my career break and being thrown to the Jobseeker wolves and being told to look for a job. I have a job to return to, but don't go back until January, so actually, I can't take a job without resigning from the job I've been employed in since 1996. JC+ just don't understand that I can't take a temporary job without losing a job I've done for years. On top of all that; the job I'm returning to are saying that I will have to retrain and the thought reduces me to tears. All the classroom work, homework and gym work...the brain fog and the unwilling body doesn't mix with those things. I'm extra angry because it was doing the job beyond 100% that caused my ill health in the first place. Grrr!

Sorry, that's turned into a bit of a rant; but boy did I need it!!

CFSKate hello again :)
They are hiding something don't you think? I've always thought that there is some kind of cover up tbh; I think that my Hep B jab was the starting point in my body, the catalyst...I only had it because work (a government body) said we should.

Hello solo! I think I remember reading your posts on the 'mild ME' thread (I was lurking mostly). Sorry to hear about the work troubles and leg pain.

If you are ok to sometime I'd be really grateful if you could tell me more about your treatment at st barts as that's where I'm going in November and I have no clue what to expect - just a wodge of questionnaires to fill in!

Hope the tramadol is going well for you grockle :)

Not such a bad day today as I only have to do this afternoon school run, but I'm noticing I go in cycles of about 3-4 days ATM. I don't ever feel like I'm pushing myself but even a little bit more than average is too much. I had to phone my dad to take me and DS to speech therapy today as I couldn't face the 4 bus round trip plus walking.

Hi fuxxpig no not that thread, but another one from a few years ago :)
Will try to enlighten you later on, but the group I was under left when my group finished and it was in around 2000...lots will probably have changed.

fuZZpig Sorry!

Hello solo, getting it off your chest helpssometimes even if u cant change the situation......today i have been told by my manager that "we all have things to deal with and if we let them in we too would go off sick...im not saying pull yourself together but!!!!!" I SUPPOSE THATS WHAT what you get for trying to be open with your manager...........she is a healthcare worker too... maybe i do need to pull myself together but if i knew how i would have done it 11 years ago.........maybe i will need to look at DLA again! today i am not just emationally but in every way possible... i am just a sad person!!

I have news! I've been refused a blue badge on the basis that the Department of Transport guidelines say my illness is of a TEMPORARY nature, pending treatment . Isn't that great?! I am thrilled - I am going to ask if they can treat me instead of the NHS since the DoT seem to have some inside knowledge & I all ask them to let me know exactly when I will be cured so that I can begin to plan the rest of my life.

I am going to appeal but I don't really know what to say other than the name CHRONIC fatigue syndrome gives some clue that it is actually an ongoing illness. I'm not cross about being refused the blue badge - it's the grounds they used to refuse it. So, more being housebound on the days when I really can't walk more than 2 steps. If anyone has anything helpful I can put in my appeal letter, I'd be very grateful. If I can't even get a blue badge to help me maintain some sort of quality of life, I'm glad I haven't bothered applying for DLA.

Solo, that is infuriating, I'm so sorry. Belle, I think I would have punched your manager. If I had the energy. Or at least 'accidentally' trip her over with my stick.

WARNING (id make it flash if i could) im going to swear.........What is the fucking benefits system for.to me it seems to be to demoralise those who arent asking to be on benefits so's not to work, but need alittle assistance to do so....It seems to be for anyone who doesnt fit the above.........Grockle it is shocking...i wonder just who is on the panel that makes these decisions...good look with appeal, i will try think what else you can put....

Grockle I'm really sorry to hear that. Sadly not surprised - DH had trouble with the system even though he had an obvious, 'visible' sodding prolapsed disc and a letter from his surgeon saying he was not able to work! It's utterly ridiculous.

Belle that really sucks about your boss. It is so frustrating! People just don't get it :(

Hi Grockle, I have de-lurked because your story really strikes a chord with me. The cloudy head you describe is an absolute classic symptom of Lyme Disease, along with the bone crushing fatigue and myriad other symptoms. I caught it 6 years ago from a tick bite in the Lakes. At first I was told I had fibromyalgia or CFS, but I had been completely fit and healthy my whole life. Was you an outdoorsy person, enjoy hiking, camping etc?

I researched my symptoms and asked for a Lyme Disease blood test and fortunately I tested positive, which enabled me to have antibiotic treatment (for over three years, my GP was really good).

Many people however do not test positive, but that does not mean that you do not have Lyme. The NHS are not good with this disease and I have also paid to see private doctors. You CAN get better from this illness with the right antibiotic treatment, adequate pain relief, along with plenty of rest, good diet, supplements and no alcohol.

I am now about 95 per cent better than what I was, but it took me over three years to get well. There is no way I could have worked, I couldn't even talk properly due to brain fog. I know what a nightmare this illness is, it takes over your entire life. Sorry, don't know how to do links, but google Dr Burrascano on Lyme Disease. Hope you get some answers soon, but don't rely too much on NHS, you may have to take matters into your hands to find out what is wrong with you