Fibromyalgia (part 2)

bigzippy

Right, I have loads to reply to cos I cba yesterday but I just wanted to say to Jo_King welcome back (I seem to remember you on here back in the day?) and that PCL's advice to take a list is spot on.

Before my first medical exam, about 18months ago I went to the GP and asked him to write me something that I would feel supported me going in. He simply wrote a list of my symptoms (which I told him) and put the practice stamp on it. It made me feel more prepared going in but he explained the second time round (about 6 months ago) that I didn't need it. "Luckily" last time I went was a bad day. I took my OH with me, who supported me throughout - do you have someone who can go with you? - and I didn't hide how hard walking down the corridor was, didn't walk at the pace the dr/examiner bloke was trying to set, and did hide my exhaustion when I got to the room, didn't hide how hard it was to do the very small exhausting exercises (which actually scared me and made me realise how ill I actually was as I nearly passed out!) and didn't hide that I needed to take my asthma inhalers either. I think that they can be very sneaky with the way they set things up. The room for mine was the furthest away from reception, they dr/examiner bloke walked (what was for me) quite fast, and that in itself makes you feel like you have to keep up. If you can't do it, don't! If, in the comfort of your own home/life, you wouldn't walk at that pace - because you're either incapable or you know it's not gonna do you any good further down the line - then don't. Same with anything else he/she asks of you.

Show your discomfort, explain that you've made the appt for when you have because it's your best time of day and you can get there, think in advance about the things that you can't or don't do for your own wellbeing and write them down.

Think about how far you can comfortably drive (they ask this) without being uncomfortable in the seat/eyes start to dry/you feel tired/your concentration slips etc. Think about how far you can comfortably walk (they ask this) without holding onto something/someone. Think about all the small parts of making a meal (say shepherd's pie or a roast) - buying everything; putting it all away; reaching/holding/carrying everything needed; getting it from wherever you store it (reaching/stretching); the weight of a bag of potatoes, standing there peeling and chopping everything; whether you can hold a knife/peeler etc for that long without cramping/becoming uncomfortable; carrying/transferring a pan, with water; with vegetables and the weight that has, bending/stretching/reaching to put things in the oven; even down to whether your memory is as rubbish as mine and you have the tendency to forget how long things should be in for/whether you've left the oven on/whether the stove is on or off/etc -remember if you have the capacity to leave something in the oven/on the stove because of your memory (for example) then that is a potentially dangerous situation. All these things factor into whether or not you are capable of making a meal for yourself, which is the main factor in whether or not you will be granted Lower Rate Care.

To give you an idea of what happened with me:
My examiner, last time, made me get up on a bed - which was raised and there was nothing to hold on to, I had to raise each leg in turn, each arm in turn, sit up from lying (harder than it should've been! but it was a narrow bed thing and there was nothing to hold on to), get up from the bed and stand up again, and there was more raising of limbs and touching of knees etc. All in all I found it to be very dizzying and nearly passed out. It made me really sick, and I couldn't believe how such simple actions had made me feel. That's when I realised, rather emotionally, just how ill I was!
He also asked a series of questions (when I was sat down) that were all guided by the computer (virtually no eye contact). Things like the aforementioned "do you drive?" "how far do you drive?" "how far can you walk?" "do you cook?" I'm sure he asked about what I ate, esp as I was saying I didn't cook for myself as I wasn't capable, so takeaways and ready meals were my answer, for example. I think they basically ask most/all of the questions from the form you have to fill in to apply, so if you have a copy of what you sent them it's probably worth going through both the questions and what you put. I definitely had a sense that they were checking what came out of my mouth compared with what I'd written some time ago. He asked me to verify my signatures on the forms too, which was unnerving in itself as it backs up that theory that they're checking up whether you've lied on the form.

Don't expect to get any sort of response from them. They are deadpan and unemotive. They won't (or aren't supposed to) give you any indication of whether they believe you or will grant you the benefit. That in itself can be unnerving too so be prepared for it. Take your time, breathe deeply, read over your application if you have it, write a list of your symptoms, take your medications with you - whether you take them 6 times a day or once a month or just for extreme agony - (they do ask to see these and put them in the computer).

I hope that helped, I think I was rambling and I may've been teaching granny to suck eggs, but I think I'd like to have known that before I went for mine!!

Let us know how you get on too. We're interested!

Careful_with_that_Axe

I do agree with the game playing. One medical stated I was able to carry a bag into the medical - of course I did it had the meds in it that they asked me to take with me!!

However, my 2nd medical, I had a doc who ws very sympathetic and did tell me as I was leaving to keep my chin up as finding an appropriate treatment for my MCTD was difficult and could take quite a long time. So there are some docs who are "human" and some who are not. It's just luck of the draw.

Careful_with_that_Axe

p.s. the cat just gave me the giggles. She decided her tail was evil and must be attacked. In tying herself in circles to achieve this, she fell off the stool she was on and landed in her water bowl tipping it over. She's not looking impressed with the outcome, but it make me laugh.

suep

:rotfl: at your mad cat cwta

I just remembered something I was told this week by a friend who was turned down for dla (she is appealing) she had to go somewhere for her medical and was told where to park, when she got there they said she must be able to walk ok as she'd walked that distance from the car park :eek: how sneaky is that ?

Hi Unity I've been getting the vertigo quite a bit lately too, it leaves me feeling sick and shakey.
By the way, what were those authors you mentioned before, was it Sally something or other ? Im too lazy to go back and find the post

Jo_King

bigzippy - Thanks a million for typing all that out. It helps to know what to expect. I hadn't thought about them being so sneaky, so I will be careful about what pace I walk at and so on. I actually think I might be heading into flare (the idiot in me forgot to take my meds this morning, and now my body is kicking me in the ribs to punish me) which would, for once, be helpful! I am going to do a long list - like the getting out of bed thing - I can do far more easily in the afternoon, with meds in my system and my body loosened up, than I can first thing in the morning or the middle of the night. So, list on a bit of paper, and wear a coat with big pockets so I don't need a bag for the medications! Perhaps I should wear slippers in case they want me to prove I struggle tying shoelaces!

CWTA - lucky you - pets are the best relaxation - and cats are the best hotwater bottles...

SueP - you helped me decide - I'll be getting a taxi.

Sometimes I wish I was better at FMS. I'm only really beginning to learn now about needing to cut back - until now I've been trying to convince myself that I'll beat FMS with enough hard work and determination. Then my GP said it looked like I was developing ME and that's forcing a rethink. But reading through all your posts it's good to know I'm not the only one to struggle with this stuff.

Medical's on Tuesday. Will let you know how it goes.

bigzippy

Are you all seated comfortably? I'm about to make up for [strike]laziness[/strike] lethargy of the last day or two!! :eek:

Pcl: I did think about PM'ing Magenta, but maybe she didn't take the post how I did...? Sky have been remarkable for c0ckups so far but the tv package is good. Thing is, with me being home so much I've gotten used to all the channels like Living...one of my guilty pleasures is America's Next Top Model (I'll get my coat!) and I can't get them on those freesat boxes or a topup card thing. As BT are rubbish (IMHO) and extortionate if you get any kind of package from them and Virgin don't cover this street...so back to Sky it is. *Sigh*
Just to clarify for you... The clocks went forward, last night (Sunday morning at 2.05am to be precise). That means if you got up at 7am you actually got up in the now real time of 8am.
What does "iirc" mean? Tried as I have I can't work it out...

Cwta: Couldn't afford a postcard ;)so...: I may've overdone it...slightly! I don't remember kneeling awkwardly on the toe, or banging it, or catching it. Only thing I could think was maybe I caught between the toes with the edge of the quilt when getting out of bed or something...maybe dislocated it or something..? There's no splinters, no bruising, no marks, no bumps (that aren't on the other foot, at any rate!)...nothing explain-able! :rolleyes:
Haven't looked at the cost of getting the invites printed at a printers, but I think my creative pride would hurt if I did that! I'd rather buy a new printer than faff with it too, esp as DF has the car most of the time these days. I want to see it through from conception to completion, dammit! (*mumbles something about stoopid archaic printer !!!!*)
Was interested about the NL trip and loved the pic. Thinking about it now I'm not sure I could sit there for so long...about a 5 hr flight wasn't it? I struggle after an hr in the wheelchair (but then they're all various widths and you have to sit a little funny - although I don't suppose plane seats are much better!). I know someone who went to Lapland around Christmas time with their kids and I'm sure they went on a sleigh ride and saw the NL then..? I'd love to do something like that.
I'm the same with the "when I'm at my most tired I have the most trouble sleeping" thing. It's uber annoying.:mad:

Tenmah: I don't know what I can say other than what they others have said. I would definitely advise consulting with CAB or DIAL or similar, definitely appeal, maybe get your GPs support in some way? Definitely ask to see/have a copy of his report. I have to confess that I didn't even try to apply for DLA til I was diagnosed, but that's not to say that I/people shouldn't. They said the same on my form, that I didn't need help with things. The only thing they agreed with was the meal making, hence I'm now on Lower Rate Care. It is frustrating but it's worth pursuing, especially if they didn't even do a medical exam on your daughter - I'm sure CAB or similar would have something to say about that.

Cwta & S/e: weren't you brave! I thought the same thing about the "what if it wasn't her!"!! I think I'd've gone with first names if I was you S/e...or maybe a photo!

I agree with what Cwta (and others) have said about the difference this thread has made, and all you guys on it of course . I wouldn't even be on the meds I'm on without you lot, and they've made a big difference. It's nice to have people, who are interested, to sound about about things...even including the W word too. So thanks guys. I love that I can come on here and read about what's going on with you guys without pitching in if I don't want to. It's kind of like having a conference call (now there's an idea! :shocked: Think anyone would get a word in edgewise?? :rotfl:) without needing to time it precisely or say anything if you don't want

Kassandra wrote:

You all really inspire me how you all cope so well and that, in turn, helps me cope and keep cheerful.

What she said That and you're all complete loons that make me laugh too

suep wrote:

I hate it when I cant get on here and check up on everyone

Wot she said too! I don't feel quite right til I've been and checked in! ...Plus I'm [strike]nosey[/strike] [strike]interested[/strike] NOSEY!

Kass: yes I have heard of the Lighter Life thing. My SIL's sister (you still with me? ) was on it and lost loads of weight (can't remember how much now but I think she was about size 18/20 and went down to size 12) within about 9 months. I hope you get the desired affect from the diet, but if it turns out that it affects your energy/pain/copeability more than it helps then don't feel bad about ditching it. Remember you're lovely as you are and size doesn't really matter anyway
I know what you mean about that pulled hair feeling too. It's sooooo annoying searching for it!
Hope you're enjoying the peace without XOH..?

purplecatlover wrote:

bz is that house safe? im getting really rather worried now, is it all dodgy landlord diy?

Lol, you'd think so! I actually watched him "fix" it though and we're both baffled why it's leaking again. I'm sure it'll be something simple that was overlooked... or something! He did say when he was here that he is gonna get the rads flushed, and pay towards my gas bill, and that he had a rubbish memory and to text him in the week to get the plugs and security light bulb. He's been alright actually

Careful_with_that_Axe wrote:

kass of course you are a fully-fledged member of the group and we are glad to have you here.

Wot she said You make me larrff.

Raeh: I'm having a bed rest day. Will that do?

Cwta/Suep/Unity: I'm not sure if I twitch while I'm asleep but I think that near enough everyone does some random jerky movement whilst they're falling into sleep. DF does it and other people I've noticed through the years, even dogs etc... I do sometimes have the type of twitch that suep mentioned though (whilst awake), although maybe not quite so violently?

Sharon Nice to hear from you. I can only imagine how bittersweet things like the visits today must be. Keep fighting the good fight though and know that we're all behind you 1001%

Unity hope things are settling down for you and the symptoms start reducing their severity rapidly. Being idle is one of my hates too, so even when I'm watching the tele I want to be doing something else with my hands. I've never mastered knitting though, and I certainly can't do it without watching what I'm doing! Tinnitus is a b1tch! Do you have any fluorescent tubes in your house? Maybe the kitchen? They're known to set it off/make it worse? Something to do with the frequency they omit or something..?

suep wrote:

I just remembered something I was told this week by a friend who was turned down for dla (she is appealing) she had to go somewhere for her medical and was told where to park, when she got there they said she must be able to walk ok as she'd walked that distance from the car park how sneaky is that ?

That's UBER sneaky!! I have heard of similar things before (Dad's been for them before where they've made him do treadmill tests etc cos he claims cos of a heart condition (and no Cwta it's not for the lack of one ) and am uber wary of them. I parked in the staff bays last time and didn't give a damn!

Jo_King hope you're still around and were here to read my essay

I'm feeling a bit pap today guys and have installed myself in bed for the longhaul. My foot/toe is still inexplicably sore but I have an appt with GP tomorrow so hoping to sort everything then. I also have a horrible feeling I have an appt with Dietician tomorrow...but can't find the letter :rolleyes: Tbh, GP comes first tomorrow, despite the longer waiting list for the dietician, cos I've got so many things to ask him about...

Hope you're not all asleep by now Catch you later!

bigzippy

Jo_King wrote: »

bigzippy - Thanks a million for typing all that out. It helps to know what to expect. I hadn't thought about them being so sneaky, so I will be careful about what pace I walk at and so on.

No problem Jo. It just came tumbling out of my head and I actually remembered stuff! (shock!!)

Jo_King wrote:

Sometimes I wish I was better at FMS. I'm only really beginning to learn now about needing to cut back - until now I've been trying to convince myself that I'll beat FMS with enough hard work and determination. Then my GP said it looked like I was developing ME and that's forcing a rethink. But reading through all your posts it's good to know I'm not the only one to struggle with this stuff.

Medical's on Tuesday. Will let you know how it goes.

I have ME too...
Glad you're having a rethink, hopefully whatever steps you take will be for the better

purplecatlover

sharon babies are the best medicine in small cuddly doses. it is not fair, the people who deserve to get cancer never do, only the ones who dont deserve it i find.

thank you for clarifying bz. iirc = if i recall/remember correctly. i asked once upon a time and decided i liked it, now its kind of habbit, along with ttyl/s/t (talk to you later/soon/tomorrow).

*waves* at everyone else.

bigzippy

Ta very much pcl that makes much more sense now! I'm quite surprised we're not on a new page yet after my essay like posts... must try harder!

bigzippy

P.s. I've finally made it in to (and out of!) the shower! :j I used the en suite one that I always forget about/discount as it's one of those cubicley ones that can be claustraphobic and I was unimpressed with the flow rate It was actually quite a pleasant experience and it's probably safer to use that one when DF's not here as I'm not climbing over the side of the bath..? :think: