Fibromyalgia (part 2)

somebody_else

Kitty*in*Boots wrote: »

Hi all! *waves* :hello:

I'm also a Fibro bod (not a sufferer-I refuse to 'suffer' :rotfl: ) and have been in denial for too many years, so have now been bitten on the bum and unable to work for a year and a half, due to the exhaustion side of things and migraine headaches/acheyness and well...pain.

Anyways-I now have a diagnosis 'proper' of FM and hypermobility from a rheumatologist, as well as chronic urticaria, IBS, dermagraphism, perennial rhinitis yada yada...

*bores herself and drops off*

I was just wondering if I was able to claim anything/get any help with adaptations around the house? I have been sooo stubborn before now but I am really struggling at the moment and find it hard to do 'everyday' things a lot of the time-just things like getting my sorry self out of the bath and so on.

My doctor is a lovely man but has told me nothing, tbh. Also-would I be eligible for attending a pain clinic for help, does anybody know, please?

I am 34, have two children, hubby working long hours, erm...hello again?! lol

*is a bit embarrassed* :rolleyes:

TY in advance xxx

Hello Kitty, and welcome to the mad... sorry, the fibro thread.

Just picking up on a couple of things and in no particular order - are you in receipt of IB? I ask, cos it can help with other things. If you have trouble coping physically (let's face it, we all do to a greater or lesser degree) then it might be worth claiming DLA.

Regarding the pain - ask your GP for a referral to the pain clinic. If he refuses (my not very good GP kept refusing my request for a referral) see a different doc and ask again. While you're at it, ask him for a referral to Social Services for an OT assessment. There are numerous things available to help you with things like getting in and out of the bath or, if like me, bathing makes you even more unwell, there are things like an overbath seat (please note, I'm not talking about a bathing board, to my mind those things are potentially dangerous and should never be issued) to help you with showering instead.

If I think of anything else, I'll post some more.

somebody_else

Kitty*in*Boots wrote: »

*is a bit embarrassed* :rolleyes:

Erm... why?

black_paw

hiya kittyinboots you might be able to DLA but please ask CAB or similar to help fill in the forms for you. local social care might be able to help with bits round house , im registered deaf , and the social worker from sensory team , but in flashing door bell, fire alarm, alarm clock, ect free of charge , i just got a yearly forms to fill in of any changes , which i put fibro blah blah blah on it , they have rang me to see if i need any other help , wow bit quick on the mark there, luck im in new ground floor flat, wide door and all handles at low , so fine at mo , but maybe later on. nice to know there there. your doctor can put you on to pain clinics i been to serveral different ones ,but they gave up as symtoms became worse !!

Triala i had massive water bill, phoned them and got put on plan a little bit cash each month , i told them have hardly any money and stressed out by all this not my fault took them 3 years to sort out bill , i did ring and write lots and lots said not to as 2 years behind on customer bills !!

Sharon nice to hear you on here , special hug for you

seems like a not too bad day today .. meeting friends later

Kitty*in*Boots

somebody_else wrote: »

Erm... why?

'Cos I feel like a big, daft, 'nana introducing myself at an AA meeting or something, lol. :rotfl:

I dunno. I guess because nobody has really ever given me the impression in rl that they think/believe FM is 'real' and I've tried to hide it for years by making excuses for not going out/doing what my mates were doing etc and in the end just hiding myself away on the bad days, after seeing people's eyes roll, or getting 'the look' that makes you feel you should just 'get on with it'...

but knowing that you just can't some days.

I feel a relieved to have a piece of paper now that reassures me I am not 'mad' or being a 'soft lass' and that being 'believed' and diagnosed has spurred me on to do everything I can to get help now and stop just hiding myself away. I want to be the best I can be and do the most I can do and that means pushing my doctor (or at least A doctor, if not mine) for help and advice, I guess. I'm too young to feel so danged old, lol.

No, I am not getting IB (Incapacity?) or any benefits. How would I find out if I am eligble, please? xxx

TY. x

somebody_else

Kitty*in*Boots wrote: »

'Cos I feel like a big, daft, 'nana introducing myself at an AA meeting or something, lol. :rotfl:

I dunno. I guess because nobody has really ever given me the impression in rl that they think/believe FM is 'real' and I've tried to hide it for years by making excuses for not going out/doing what my mates were doing etc and in the end just hiding myself away on the bad days, after seeing people's eyes roll, or getting 'the look' that makes you feel you should just 'get on with it'...

but knowing that you just can't some days.

Oh yes, I know that feeling, but you don't have to feel daft any more 'cos it is real and there are lots of people here who know far more about it than they have any wish to.

Kitty*in*Boots wrote: »

No, I am not getting IB (Incapacity?) or any benefits. How would I find out if I am eligble, please? xxx

TY. x

Um... it might be too late for that now - there are no new claims for Incapacity Benefit, it's become the employment support allowance and I'm not sure if you'd now be eligible to claim for it. In order to qualify for IB you had to have made 2 years worth of NI contributions, so suspect that the fact that you've been off sick for 18 months already would exclude you. It might be worth phoning your nearest job centre to enquire.

Kitty*in*Boots

Thank you. xxx I didn't know who, or where to ask before now-I was hoping to be able to go back into work after a short break, you see. I didn't know about 'Employment Support Allowance' either. I've not known who to turn to for advice, really.

Careful_with_that_Axe

Oh pooh. Just had a horrible thought - if my IB renewal isn't successful (with the transition to ESA it wouldn't surprise me if they tightened criteria etc), I'll have to apply for the ESA which is frighteningly scary. I really wish that thought hadn't happened.

Ah well - shall lock that one away in a box as we all have enough to stress us without me worryign about something that "might" happen.

Am all a bit confuduzzled and kerfluey today as have been late in getting prescription renewed and ran out of some tabs last night that make me feel really weird when I stop taking them (anti-d's). I swore I would never do that again, but I've been a naughty little procrastinator this last 10 days.

Welcome Kitty. We've all been through that "ill for ages, but newly diagnosed" stage, so come around and pick what little brains we have left. It's been astonishing how all our experiences are so similar.
And you can't be the daft nana - that position is already taken *g*

bz, s/e, suep etc. Hope you're all on the up even if only a little.

Right - off to tackle the day. It is Wednesday?? Right??

Kitty*in*Boots

lol TY Careful with that axe. x I was in a car accident in '99 that knocked my face, neck and back about a bit and left me with migraines/facial pain for ages, so that and the intolerances left me with loads of symptoms that fuzzled me and the doctors both, I think and it's only been the last couple of years that FM was mentioned at all.

I am feeling a bit tearful and foggy headed today, 'cos I had a bad night (worse than normal night, lol), so might tackle reading up on this 'ESA' until tomorrow, because my head's spinning already.

*does that scene from the Exorcist*

Have good day. x EEK! Wednesday already? :eek:

somebody_else

Careful_with_that_Axe wrote: »

Oh pooh. Just had a horrible thought - if my IB renewal isn't successful (with the transition to ESA it wouldn't surprise me if they tightened criteria etc), I'll have to apply for the ESA which is frighteningly scary. I really wish that thought hadn't happened.

Ah well - shall lock that one away in a box as we all have enough to stress us without me worryign about something that "might" happen.

I wouldn't worry too much Auntie Axe [hah! get her!] as I suspect in your case that you have enough diagnoses to make 'them' wary of removing your IB.

Careful_with_that_Axe wrote: »

Am all a bit confuduzzled and kerfluey today as have been late in getting prescription renewed and ran out of some tabs last night that make me feel really weird when I stop taking them (anti-d's). I swore I would never do that again, but I've been a naughty little procrastinator this last 10 days.

tut, tut! That's where being able to order my repeats via the 'net are a godsend - I used to regularly come close to running out of meds 'cos I was frequently too unwell to go down to the surgery, and our surgery stopped phone requests years ago.

Careful_with_that_Axe wrote: »

bz, s/e, suep etc. Hope you're all on the up even if only a little.

Right - off to tackle the day. It is Wednesday?? Right??

I can't speak for anyone else, but the pulled muscles are starting to settle down again. Just in time for me to do the ironing and have a de-clutter before my house fairy comes tomorrow.

As for 'it is Wednesday, Right?' - I spent a good hour after I got up this morning convinced it was Thursday.

somebody_else

Kitty*in*Boots wrote: »

Thank you. xxx I didn't know who, or where to ask before now-I was hoping to be able to go back into work after a short break, you see. I didn't know about 'Employment Support Allowance' either. I've not known who to turn to for advice, really.

Yup, been there too. I asked my GP for a sicknote for a couple of weeks just so I could recover some energy (and hopefully get something that would a) do something for the pain and b) help me sleep a bit more than 2 hours a night). Erm... 4 years later and I'm still off sick and she's fairly sure that I'm not likely to return to work. It takes a bit of getting used to, that.

'Fraid I can't really give any more advice about the ESA, 'cos I've been on IB for the past 4 years so haven't had to take too much notice of it up 'til now. No doubt I'll have to look into it at some point, but not yet.