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To want to knock my families heads together and actually just shake my sister until she gets it.

(35 Posts)
ConfusedPixie Tue 09-Apr-13 17:54:34

I have had chronic pain in my knees since I was 10. It started spreading to other areas when I was 18, shortly after I left home. I'm now 23 and in constant pain. Normally low level so perfectly manageable and I can lead a normal life as long as I don't over work (I work 28hrs a week because of it these days though overworked before and suffered for it).

My family believe it is all in my head. I make things out to be worse than they are. There's actually nothing wrong with me. Etc.

I posted an FB status complaining about painkillers containing caffeine and finding it impossible to find some without. 'Little' sister then posts "maybe you shouldnt have so many painkillers then.. ?"


I just want to shake her until she gets the fucking point but she never will because none of them will, even my own mother who would comfort me in the early hours of the morning when I was crying and in pain through my teens.

AIBU to want to go home and keep knocking their heads together until they at least pretend to show an ounce of acknowledgement. I am fed up of watching what I say when I visit them. I gave up censoring my FB when I realised that actually, I should be able to have a moan on there and if they don't like it they can hide it! I should be able to tell my Mum about where I am with doctors on a diagnosis (when she asks!) without her saying "Oh it's fine, it's probably not that fibro-whatever you call it anyway!"

Gah. If you can think of a witty retort I'll ply you with wine (or brew if you prefer) wink

thezebrawearspurple Tue 09-Apr-13 17:59:50

Delete and block them from fb and your life until they get it. Rude, ignorant cunts, for some reason they choose to believe (and tell you) you're a crazy, lying drama queen and if years of watching you in pain (and crying all night from it) doesn't get it through their thick skulls, nothing will.

DontSHOUTTTTTT Tue 09-Apr-13 18:01:55

I agree, Block them for seeing your status updates.

tripecity Tue 09-Apr-13 18:03:35

Message withdrawn at poster's request.

HollyBerryBush Tue 09-Apr-13 18:06:18

Are you actually diagnosed with anything if this pain has been constant for 13 years?

LineRunner Tue 09-Apr-13 18:10:58

And ... You definitely need to get a second opinion and decent treatment. My Dsis had this for years and it was only when she moved and went to a different hospital that she got it sorted out. The poor thing was in her 30s by then. She great now, btw.

Tee2072 Tue 09-Apr-13 18:14:50

There are plenty of painkillers without caffeine.

I agree block and ignore.

ConfusedPixie Tue 09-Apr-13 18:18:19

Haha, I wish sometimes. They actually aren't too bad only because I moved 150 miles away, my mother is actually quite helpful about the various symptoms, looks up things to help, has arthritis and understands being in pain, but doesn't think I have fibro or CFS or ME or anything like it. She doesn't see the whole picture really, sees all of the symptoms as separate and fixable (or manageable), which is ironic considering she's a holistic therapist. It's my sisters who drive me up the wall with it and I purposely don't see my younger sister because of it (and she's just rude in general).

Holly: I was misdiagnosed at the start for the knee pain, they withdrew that diagnosis when I was 17/18ish and after seeing various doctors who dismissed me between 18-21 I gave up until now (my living situation before made it impossible to stay in one area for more than a few months too so that didn't help). I'm back on the diagnostic path now though to try and get a diagnosis for fibromyalgia. The constant pain is a fairly recent (2 years or so) thing, I was frequently in low level pain before that but not constantly.

It is just very frustrating to have to refrain from taking painkillers in front of them, or mentioning it. It's annoying when somebody suggests working more hours (usually in context to saving money or similar) and "I can't." isn't seen as a valid 'excuse'

ConfusedPixie Tue 09-Apr-13 18:20:36

Tee: There are, I just am struggling to find them confused Little shops don't seem to be stocking them (the types of shops that don't stock own brand) and every time I go to a big shop that do stock them they are out of stock. Bad luck really! I forget about them too so it's only when I need to buy more that I realise I probably could have gotten them from X, Y or Z last week.

Tee2072 Tue 09-Apr-13 18:47:22

I have fibro, Confused. It's hell.

I take paracetamol one day and co codamol the next in a never ending cycle to function. It's part of the reason I freelance, so I can rest as needed.

elliejjtiny Tue 09-Apr-13 18:55:40

My DS2 has chronic pain like that, he has Ehlers Danlos Syndrome. He gets a lot of comments about how it can't be that bad etc.

ConfusedPixie Tue 09-Apr-13 18:58:52

sad I'm worried that I'm going to get to that point in the next few years, which is why I'm pushing for the diagnosis now as the rate at which my health deteriorated over the space of about 12-18 months really scared me into taking action.
The pain isn't the big issue for me in my mind, it's the bladder problems, gut reactions, fogginess, tiredness, insomnia and the rest of it that gets me. I could cope with the pain on it's own because I'm used to that and it's low level, until recently I hadn't had pain killers very often for years, until somebody told me that the constant pain, even though it's only really a 2/3 90% of the time on the scale of one to ten, would make me tired in itself. So I started having painkillers regularly again but have been having trouble finding ones without caffeine, which is a pita as I usually resort to the painkillers at night, not during the day.

Tee2072 Tue 09-Apr-13 19:10:42

Can you order from Boots online?

kinkyfuckery Tue 09-Apr-13 19:16:24

I have fibro. Some days things aren't too bad. Others, it's a living hell.

Some people struggle with conditions that they can't see

I didn't realise that some painkillers contain and others don't contain caffeine. I often have trouble sleeping at night, can you recommend which ones don't contain caffeine? Thanks.

Tee2072 Tue 09-Apr-13 19:19:14

If you get plain paracetamol, it will not have caffeine.

ConfusedPixie Tue 09-Apr-13 19:19:39

Never thought of that, thanks! I will try that as I can never get to the nearest boots/pharmacist to me and I can't go during work hours smile It's a never ending cycle of being tired and in pain so you don't want to go to the shop to get things, but you have to get those things if you want to get out of the house without being in pain.

I've just ignored my sister and she's carried on chatting in a different tangent. Maybe from now on I'll just ignore health related things when we do communicate. Seems to have worked this time. I may still bang their heads together next time I'm home though.

ConfusedPixie Tue 09-Apr-13 19:22:11

Kinky: It will tell you on the packet on the front if it has caffeine in it smile So if you haven't noticed it's likely that you have nice and normal painkillers smile I wonder if it's a common thing to avoid the caffeinated ones though as it seems like really bad luck for them to be out of stock of the nice and normal stuff every time I go shopping (though I do go late at night when they are restocking usually)!

Tee2072 Tue 09-Apr-13 19:48:49

Now that I'm on a computer and not my phone I can actually type!

I used to fight taking painkillers, also. It seems so defeatist. But you know what? Constant pain is exhausting. Add in the insomnia which causes more pain which causes insomnia...and so I take my paracetamol or my cocodamol and it helps.

I have also been offered a narcotic patch which so far I am avoiding. I'm off to my GP soon, I may ask for a trial of it.

Tee2072 Tue 09-Apr-13 19:49:29

Oh sorry and as for those who think you aren't sick...send them here: But You Don't Look Sick

PurplePidjin Tue 09-Apr-13 19:51:01

"Wow, Little Sister, I never thought of that! So, according to your medical degree, if I take fewer pills I'll hurt less? You should market that, you'd make a fortune!"

Fwiw Tesco Express does own brand not-caffeinated paracetamol and ibuprofen. I can't have caffeine because it gives ebf ds colic argh new born and no chocolate hell i tell thee

kinkyfuckery Tue 09-Apr-13 19:55:24

I'll have to take a look, thanks Confused

I'm usually on a combination of Voltarol/Diclofenic and Codeine, or Ibuprofen and Co-codamol. I was on amitriptyline at night but stopped taking it a while back in a stupid act of "I'm not going to be sick and dependent on medication forever" defiance. I think I'm approaching the needing to go back to the GP and give them another try sad

Tee2072 Tue 09-Apr-13 19:58:24

I have been told by more than one GP that ibuprofen won't help fibro and it's so bad for your stomach it's not worth it.

I just take 6 - 8 paracetamol or 4 cocodamol a day.

mummymeister Tue 09-Apr-13 20:02:13

You do not need them in your life do you. you have a medical condition. it is being investigated and what they should be doing is supporting you to get a diagnosis. i know some things are difficult to diagnose but this has gone on for way way too long without you knowing what the hell it is and what you can do about it. go back to your gp and demand some tests, referrals the works. you cannot go on like this for another 50+ years. i spent over 15 years misdiagnosed and now have a diagnosis and treatment and am virtually pain and discomfort free. please go back and demand to get the attention you deserve. as for your family, they need to know how hurtful they are but please dont put up with this crap from them.

kinkyfuckery Tue 09-Apr-13 20:04:27

Really Tee? I will have to look into that then confused

Tee2072 Tue 09-Apr-13 20:10:51

Well, ibuprofen is an anti-inflammatory. Fibro is not inflammation, so it makes sense if you think about it.

If you have other things, i.e. arthritis, it might help that, though. But it won't do squat for Fibro.

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