Fibromyalgia

welshbit wrote: »

It helps to have a supportive GP, if you don't have one then try a different GP at your practice. I have 4 GPs at my practice, 3 of them have had me in tears, but the other 1 is absolutely fantastic. She encouraged me to apply for DLA and to use CAB. She advised me about a blue badge. You need a supportive letter from your GP stressing your problems with mobility. You then fill in a form and include the GP letter. Hopefully they'll reply asking you for a photo and a chq to cover admin (either £2 or £4, can't remember). I]Does anyone else suffer with memory problems? don't know if it's the FM, depression or the meds.[/I NB you don't need incapcity benefit or DLA to qualify for a blue badge.

After my RTA I had a very sympathetic good GP, then I got moved to another GP for the last 8 months and he's done nothing for me, thought I was having a laugh when I told him I was applying for DLA, wouldn't help my application at all. The DLA have now written to him for a report, he knows nothing of many of the problems and difficulties I face, I'm worried he will scupper my DLA claim. I have now got several Specialist Consultant letters together and sent them to the DLA and I am now going to move to another GP.

Well, I have sat here reading your messages, with tears rolling down my face.

Not cos my arms ache, not cos my shoulders ache ... not cos I have back pain, hip pain, numbness and tingling in my feet ... not cos I am struggling to concentrate on what I am typing ... not cos my neck aches to bend down to look at me keyboard ... not cos I generally feel ill and totally exhausted ...

But because I no longer feel on my own!!!

Yes, I am so terribly terribly sad for each and every one of you with this stinkingly awful thing ... but I am sat here in tears thinking my God ... there ARE people out there who know what I am feeling!!

If you have a pot on your arm or your leg ... people think something is wrong and you are in pain, but if you try to carry on and brave the pains and aches ... the IBS and all the other blooming things that come under the umbrella of fms, people look at you and don't think for one minute there could be anything wrong with you.

So what do you do ... do you give in and spend your day moaning about it? Of course not ... you get mad ... and you fight ... right to falling in bed at night, you still feel mad when you are telling yourself you WILL sleep tonight ... even though you know damn well that no matter how many tablets you have taken, you will wake up in agony and have to move about in bed (causing more pain) ...

And even though you know that come morning you will feel like you haven't been to bed and yet you will still have to get up, spend time getting mobile, take tablets to enable you to face doing the smallest things that you used to take for granted ... you STILL FIGHT.

Yep, some days you wonder what the hell you are bothering for!
You look at people in the street and think to yourself they don't know what you went through to get out there today ... you walk round the supermarket pushing your trolley and wonder if anyone realises that it is your support and without it, you might fall ....

You look at your doctor and wonder if they truly believe what you are saying ... you tell them that it is NO fun being you .... that you wouldn't choose to be like this ... to struggle every minute ... to not know from hour to hour how you are going to be ... to not dare to go anywhere incase you are too ill to get back home ...

To not be able to do the things you used to do ... and when they say have a massage as though it will cure everything, you have to remind them that if someone touches any of your pressure points, you will go through the roof with pain, so it isn't an option, you realise they don't know as much as you would hope they knew ...

And then you realise .. and it hits you hard ... that you are fighting this on your own ... and that realisation hits you like a brick to the stomach ... (well, can it make you be in any more pain than you already are in?!) ... and some people give in ...

But others fight for even half an hour of "normal" ... for me that is around midday ... come 2pm the exhaustion comes over me and I can't do anything else. I can't make an appointment on a morning because it takes about 2 hours to get mobile ... I can't make one on an afternoon because I know I am just in "exhaustion/have had enough" mode ... and am fit for nothing ... even the 18 tablets a day won't combat that!!

But you know ... at 36 years of age, having had this since 1993 after a car accident, I am more mad than anything else ... and in a way, I have turned that anger into a crutch ... it makes me stubborn as hell and it makes me WANT to fight .. you can fight through the pain and the aches and you can fight even when you think your last sap of energy is used up ... keep going 5 minutes more ... then rest .... tomorrow, if you keep going 6 minutes more than when the cut off point kicks in, it is an achievement ... the next day you might not be able to ... grab what you can ... know that you will be in pain whether you sit in a chair or whether you try to do something.

So try to do something. You might not manage to do what you want to do ... but at least it keeps your inner spirit strong .. and believe me, you need to stay strong ... you need to find other ways to "live" .... to "exist" ...

And believe me, I know it isn't easy. Sometimes I can't do anything at all ... so do what you can on your good days, and if you don't have good days, then do what you can in your good half hours! But try to do something ... even if it is making a cuppa ... keep fighting ... keep strong ...

... and take heart and comfort from knowing you aren't on your own!
It's meant so much to me to learn that tonight, reading this thread!

Take care and keep your chins up ... xxx

welshbit wrote: »

I know there's no common sense when it comes to the DLA decision makers, but from my point of view, if your GP doesn't write a favourable report when you have letters from specialist consultants supporting you then it won't show him in a very good light. GP's have to be a jack of all trades and mostly masters of none. Whereas your specialists letters should be held in much higher regard. I hope your decision maker has some common sense and you get the DLA that you are obviously entitled to. If you're not satisfied with the outcome contact CAB ASAP and they will help you to try and get the decision overturned. Well done for making the decision to change GPs. It's a pain in the rear but good for you for doing something about it, when life is already so challenging.
Good luck
Ali

Thanks Ali. My GP's going away for half term so I'm seeing another next week so it makes it a good & easier time for me to change. If I don't get the DLA I think I should get I shall definately go to tribunal and get the CAB involved.

Hi, I'm 26 and I've finally been diagnosed with Fibro (after, now looking back, many years!) as well as ME/CFS and IBS (again after many years).
I take amytriptyline for the fibro - and the doc has now given me a variety of mg of tablets so I can "find my own level" which I think is hilarious! It still doesn't get away from the fact that it seems to be a trade off though: I can be awake and in pain (having too little a dose) or asleep/completely zombified and have manageable pain (having taken a little too much). There doesn't (as yet) seem to be a happy medium (but then that also seems the case for levels of activity, esp with the ME).
As for the benefits system, it's probably better not to get me started! At the moment (only just) I get the lowest level of DLA but have turned my mobility application down. I'm hoping that as I nearly collapsed in the DSS required medical exam yesterday they might overturn that decision. If it goes on unsuccessful much more I shall be visiting the CAB for backup. I'm interested that Welshbit says a letter from the GP will sway the blue badge folk - I shall look into that.
As to vivatifosi and the enthusiasm of Welshbit - I thoroughly recommend checking out the other products on that site too... one of my favourites is "my disabling chronic illness is more real than your imaginary medical expertise" but there are others too
I also recommend, to all you out there with an invisible illness... check out butyoudontlooksick.com and have a look at the Spoons Theory (http://www.butyoudontlooksick.com/the_spoon_theory/) I found it a fantastic way to explain to people about living with ME (for example).
Might help..? :rolleyes:

I have to admit my Doctor is FAB!!!. He has done courses on fibro so understands the syndrome very well. If he hadnt understood i wouldnt have been diagnosed yet even though 10 years ago i took i newspaper clipping to my old doctor about fibro and said is this what i have. When i was 17 a consultant told me and my mum that the pain was in my head. She believed him for 5 years, strangly until i gave birth to my son at 22. She was amazed about the lack of pain relief i had and then realised for me to say i was pain then i must be in pain. To have my mum not believe me was hard. One great thing about pregnancy is that my symptoms just disappeared. It was great. I have 3 children and it happened on all three occasions. However a few weeks after birth symptoms do come back with a bang. Also I had a major op in July and at the end of September the symptoms were the most severesti have ever had. My neuropsychologist says this is normal.