In so much pain every slight m...

[MrsOtter]

In so much pain every slight move I make :,( I hate being like this at 18 I should be able to do things without being limited, really isnt fair. Sick of the tears tonight already. Really really dont want to work in the morning :,( xx

[glochessum]

You poor thing, you shouldn't be going through this at such a tender age. I wish I could do something to help x

[MrsOtter]

Thank you Glochessum.. x

[wallflower_fairy]

Hi there,

I thought I was the only one.. I turn 18 next July!

I try to live as normally as possible but its tough- and not everyone knows whats up. It feels never ending. I've been feeling really down recently too, for lots of different reasons - I won't go into detail here.

I hope you feel better soon. If you ever wanna talk it would be great to hear from you. I'll try my best to share advice too.

Soft hugs, wanderingwallflower xxx

[MrsOtter]

No your not the only one my 1st symptoms began when I was just 11 :/. When im not having a flare up i can genrally live with the pain and get on with my life but during a flare up i can barely move it sucks :/ And thank you x

[wallflower_fairy in reply to MrsOtter]

Hey- no problem. Sorry for the late reply - didn't see your message. But thank you for responding to me so quickly. Its lonely to have these symtoms at such a young age. I try to explain to my friends if I'm not feeling well, but they don't get it- and I feel guilty for envying them- I could go on for hours here but I'll stop myself. There doesn't seem to be many other young sufferers on here- though I think I've seen one or two on here so if I see them might say hello.

I'm the same, if I can manage my symptoms, I can live with them, but during a flare up everything just feels impossible, everythings an effort, and it seems to be during anxiety my symptoms flare up, which unfortunately, I've had a lot of recently.

Its hard for me to say when I got first got ill, but I started to really notice my symptoms just short of 16. For all I know it could have been way before then- its hard to pinpoint. It sounds like you've been suffering a lot recently. I really hope you feel better soon.

Take care, and soft hugs, wanderingwallflower xxx

(eeep - and I turn 18 in 10 days!)

[MrsOtter]

Its alright well been to wales for week and ive been absalutely fine until I got home! My whole body is hurting because of walking and sleeping on an air bed on the floor ha. Was worth the pain though.

Yeah i have been suffering a while! Since i was around 11 it started with my knee and at first they thought I had no cartlidge and when they ruled that out it was arthritis and they they ruled that out so I has mris and xrays on it and then said they couldnt find a problem so tere is nothing they could do so i lived with my knee 6 years with it in constant pain and giving way on my before they have finally found out what is wrong ha and only reason they have found out is beause it is now on all my body and like 4 people in my grandmas family have it including my grandma :/ it is a horrible thing to have. Even when you get relief of nowing what it is, reality then kicks in that there is nothing they can do for me i am like this for life :/. It sucks.

Happy 18th whenever your birthday is lol mine was 3 months ago xx

Hope you are feeling okay! How you planning to spend your 18th? X

[wallflower_fairy in reply to MrsOtter]

Glad you had a good time in Wales. Sorry it made you suffer with pain though. I hate it when that happens, you spend a few days having fun and then you pay for it the next day. \: But I'm glad it was worth it. I try to have as much fun as I can because I will not let this stop me from living my life.. Although thats easy for me to say..when I feel I've been suffering a lot recently with depression, fog and fatigue, and telling myself its just a tempory phrase and I will 'come out of it'-the depression anyway. Its just all the other symptoms-and rain, which are making it worse and its like a downward spiral- I might have to seek help if it doesn't stop soon- I think I know whats causing it but I've no idea how to solve it. Anyway, sorry for being so depressing ! - before my mind wondered I was actually about to say I have these awesome shoes that would be painful for anyone to wear, but I love them so much I was just wear them anyway - they are worth the pain (luckily me feet and ankles don't suffer that badly with the symptoms). They are so cute. I even found a matching bag and purse- which hopefully get for my birthday - very excited !

I know what you mean about first feeling unwell, then relief about knowing the reason behind it- then hard reality setting in. It all sounds too familier. Even though and my symptoms arn't as severe as some peoples I still get overwhelming flareups and still have trouble coming to terms with the fact..that its permenant. Even though I know all the facts,I think theres still a small part of me thats in denial about it, that still thinks this is temporary-especially when the symptoms disapear for a while- like the other day for example, but its always come back. During recent flareups I've been waking up feeling..terrible and a little voice in my head says - 'just get through today', so I struggle my way, but that keeps happening until a small part of me thinks, 'this is ridiculous - I can't live like this forever'. I also worried about the future, if I'm feeling like this now when I'm so young- what it will be like in a few years time ? But I guess its too soon to worry about that now, as many people have said, you never know whats going to happen- and besides, they might have found some better treatment by then. I think thats ones the big reasons for me coping, that theres hope.

It sounds horrible what you went through when your symptoms started- so distressing- especially at only 11. I'm really sorry to hear about it. I was 15- coming up 16 when mine started. First I started getting this migraines, then these weird pains in my arms in which they felt like they'd just been injected- then the other symptoms followed on. It was terrifying- at first I thought it was something really serious. Especially when the tests came back clear. I did get diagnosed aged 16 and a half- and this was after desparate research on the web trying to find out what was causing my symptoms- I knew when I hit the nail on the head, and getting put with a good doctor, so I was diagnosed a lot faster than some. Although this was after having to spend a dismal summer living with it, when all my friends-who I felt more and more disconnected with- were having fun, and also my GCSE exams. I also had the first few months of 6thform interupted -so I'm now a year behind- but never mind. Genetics do seem to play a role in it, from my Mums side gran and 2 aunties have a vitamin D defficiency, which is apparently linked. Both my aunties have this blood condition and get similar symptoms- and one has an inflamed thyroid. My Dad also suspects that his Mum has it - although shes not been diagnosed. I really hppe they find a cure somehow. Oops. This is gotten a pretty long message - lol - I guess I'd better start to wrap it up now.

But I hope we can continue chatting.

xxx

P.S. Thanks. Only .. 3 days to go ! lol. For my 18th I'm meeting up with my friend for drinks - I haven't seen her in ages and I'm looking forward to catching up with her. Then the follwowing Sunday we're having lunch with family which will be nice. What did you do for yours ? Hope it was good.

P.S.S sorry, this is massive comment lol

[MrsOtter in reply to wallflower_fairy]

Haha you arw are alright i dont mind the long message It is such a horrible thing to have and to be on anti depressants ar our age is horibble the think about i have to take them for 6 months and if it makes it any better i will be on them for life which upsets me I never thought id be like this I was going in the navy so my chose of career has been affected too so that sucks

Absalutly hate flare ups and they can come completely out of the blue with no warning which is even more annoying it is so hard to plan anything because i never know if i am going to be well. Specially with the bad weather as it makes me have more flare ups then usual plus i have raynauds so when it is cold that is worse and alot of the times can not feel my legs and have dark purple limbs :/ went to a christening on sunday and had to go home early because my legs were completely knumb :(.

I hope you have a great 18th!!!! I had a meal with my family and my boy friend for mine it was great hehe I was having a flare up o could not do much else hehe. Xx

[wallflower_fairy in reply to MrsOtter]

Hehe thanks.

I know what you mean about meds, I don't like keep going back the quack every sixmonths, the repetition of it- its a real inconvieniance. when many people our age don't. I'm not taking them atm, but coping badly without so may have to start them again.

Know what you mean about flareups as well, although I usually know when to expect them because I get them after bad anxiety, but this itself grips me unexpectedly. v. unpleasent. I'm the same, most of the time I try to follow through with things but get significantly less enjoyment out of them if I don't feel well. Having said that, I HAVE been missing out on school from not feeling well. Oh Jeez. I will make a fresh start next term though.

That sounds really tough on you. Having to decide against the Navy. It can't have been easy. I think it happens to a lot of us - having to change plans and make decisions based on our condition. /: Its hard, especially if its your dream. I can semi relate. I had a lot of plans when I turned 16 to try and make something more of my life.For example, my Grandfather encouraged gave me advice about an agency which gives you the opportunity for 'bit parts' on TV (until you slowly build up and become an actress). Hes been filming me on his video camera since I was I was a little girl so hes knows how badly I've wanted to be an actress. Not just that, but anything that involves creativity. I've always been known for my singing, buy can't do that v. well now because of my breathing. I hate how that skills been taken away from me. Anyway I planned on contacting the agency as soon as I've changed a few things about myself and built my confidence up, e.g. by losing weight, among other things. (I'd always been a bit bigger than Id like to have been). Fortunately I managed to lose some- but about halfway through the process was when I got ill, ('somethings not right here', 'surely I should be getting more energy, not running out of it' - I was doing everything right see, sensibly) what made things more distressing was that no one believed what was really up and blamed everything on stress. In the end, I gave in, did nothing. I wasn't really thinking straight. Never mind having to suffer it alone. I'd managed to lose most of the weight, not as much as I wanted- I was disapointed that I kept doing what I should- but the rest wouldn't budge. Anyway, its not the end of the world, I've been told I look fine, and accept that - learning to appreciate myself again. What happened took a big toll on my confidence. Anyway, September rolled around and I had to make a decision, I wasn't thinking straight and felt I had no other choice but to stay where I was, at school - not part of the plan at all. Sometimes still feels hard to accept that I'm still there after all this time- I've never liked the place. But my subjects are going well, and hopefully I will get something out of it.

It sounds like you've been struggling a lot recently. and in a lot of pain-it must be awful , I really hope things can improve for you somehow, if only this weather would brighten up that would make things easier ! I really hate the cold.

Btw thankyou for the birthday wish. Technically speaking 10 minutes to go - (its 10 to midnight lol). Gaaah ! GAAAAH! Realisation has just struck ! Its my birthday tommorow ! My mum just said 'see you in the morning when you're an adult', eek, milestone EEEK ! *breath* *breath* I'm okay. I'm okay. ..Does everything really change ? Thats what some of my friends tell me. Gaah I don't want everything to change ! Oh Gosh..breath. Okay, I'm fine. I'm glad you had a nice birthday. Any advice on guys btw ? I never seem to have much luck getting a boyfriend, then again needs to be the right person. Okay well I'm off to bed. Will be completely different tommorow if friends are right - gaah ! lol Look forward to speaking to you soon. 5mins ! Ahh !!!

so night night xxx

P.S. long message again. oopsy hehe. Habit of mine = talk a lot.

[wallflower_fairy in reply to wallflower_fairy]

sorry, went a bit crazy earlier. I think it was just a little late and then the sudden realisation. But I'm fine now ... and I'm the same person as I was two days ago hehe.

xxx

[wallflower_fairy]

Hey, it's been a long while.

Sorry for all of my rambling and stuff before- emotionally feel more normal now. Hope you're okay.

I'd like to get to know you more, so if you're okay with that, let me know.

xxxxx

[MrsOtter in reply to wallflower_fairy]

Dont worry about it havent been ignoring you not been online in a long time ha ha

[wallflower_fairy in reply to MrsOtter]

Hey it's all good, don't worry. I've been off and on too. xx