Another year,Still fed up, still no answers

[Moody-mum]

still waiting for docs to say its fibro. Our doctor doesn't believe fibro is actually a condition. So I am still hitting my head against a brick wall. I sit here most nights wondering what tomorrow will bring. Sometimes I wish it would never come. Without the diagnosis I cannot get P I P. Still no help from the other departments either, cannot get in my bath anymore I have to try and wash/clean myself in the bathroom basin. I telephoned first base at our local council 2 weeks ago and asked to be put in contact with someone there about a grant to alter my bathroom. They are looking into it and will notify me when I can have a home visit. Keeping my fingers crossed its not going to be another year.

[Jurph]

Technically, you don't need a diagnosis to get PIP. It's about what you can't do, not what you've got.

[Moody-mum in reply to Jurph]

I was told this before, I tried to get D,L,A, I got turned down for that on the basis of not being diagnosed. So with P,I,P you don't actually need a diagnosis. I'll try the forms again then. See where I get. I'm hoping to get a council grant to alter my bathroom, I need to get rid of bath, and have a shower unit put in, with a seat so me and my hubby get wash without the fear of falling.

[Starry]

Take care. My doctor isn't interested in a diagnosis either but it's funny psychologically there is something about being able to give it a name, perhaps if nothing else but to curse it on bad days xx

Good luck with getting the help you need xx

[Moody-mum in reply to Starry]

Hi thank you, with all the support I get from friends here, it always makes me want to try a last time.

[Cookie16]

God you sound like me been bk and forth to gps with same stuff, gp said he’d refer me as he cant diagnose then nothing

[Hidden]

I eventually got diagnosed with Fibromyalgia after 3yrsplus tests to rule out everything else.I thought the same as you that if I got the diagnosis I would he able to claim PIP but I am now awaiting a tribunal date after and assessment and an appeal. As a previous poster said it doesn't matter what illness or disability you are diagnosed with its proving how it actually impacts on your daily life..basically if you can move,talk and are able to communicate then you will struggle to get PIP!!..They are ruthless.

[MariLiz]

Your doctor ought to be referring you to a rheumatologist for a diagnosis. That was how I was diagnosed. It’s basically done by ruling out other things.

So sorry you are having to fight to get help.

[Jesse2016 in reply to MariLiz]

My GP after listening to me and ruling out thyroid and cancer sent me to see a brilliant Rheumatologist who diagnosed me after a physical examination (painful). This is 3yrs diagnosed... 10yrs suffering. My previous GP tried to blame it on early menopause... WRONG! Then he said STRESS (yeah from him). I moved to another county and because my old GP fobbed me off I said nothing and kept over doing it with Ibuprofen. One visit my GP said let's get to the bottom of this. She had a suspicion it was either Fibro or Lupus.

Now I am on pain patches which help a lot more than pills and are less harmful for lifetime pain suffers.

I would say to anyone suffering and their GP is unhelpful. CHANGE YOUR GP or print off from the fibro website the symptoms and go to your GP and show them how many of the symptoms you have

Good luck

[phlebo123]

Hello, sorry to hear that you have not got a diagnosis. It sounds like your doctor needs a little education! Have you thought about sending him an information pack about fibromyalgia? It can be done anonymously, so he won't know it was you who requested it........ look on the homepage of the fmauk.org website and towards the bottom of the page you can request a pack to be sent to him.

Also have you considered asking for an appointment with a different doctor in your practice? When you make the appointment, ask if there is a doctor who has an interest or specialises in fibromyalgia. Then make a list of all your symptoms to take with you to the appointment, and ask if it would be possible for them to refer you to a Rheumatologist, because they usually diagnose fibromyalgia.

Take care xxx

[mcglada0]

I’ve never had a diagnosis and it really doesn’t bother me. I know how life altering this illness is and so does my doctor. Fight for what you’re entitled to get. You don’t need an official diagnosis. They should look at your physical condition and go from there. Good luck - you deserve to have your condition recognised even if not given a name! Xx

[Flossyossy]

Hi. My Dr was the same. I looked to see if there was a Specialist in my area. This was a Rheumatologist and I ended up paying to see him privately. He diagnosed me using the 'American College Classification Criteria'. This was 2 years ago. I know that an assessment using this method isn't always used and some people even question it. Look it up so you know what it is. He then requested from my GP that they carry out a list of examinations and tests to rule out any other reasons for my symptoms. I changed GP at this point. I know everyone can't afford to see a Dr privately but like you I was at the end of my tether. Hope this helps.

[Moody-mum in reply to Flossyossy]

Hi Thank you, I have seen about 7 different doctors, they all say we'll start at the beginning and g from there,, but it never the same doctor twice. I'm trying to get another one for Wednesday morning, as I have the c.o.p.d clinic at 11.30 in the same building. I'm going to state my case as I'm really fed up and depressed with it all.

[Maverick17]

Hi I would have ask what sort of doctor are they.

I was diagnosed at the hospital 3 years after being diagnosed with a fractured back and sarcoidosis along with Fibromyalgia now.

I would be seeking a new doctor and some one who understands the condition.