Rant. Sorrry.

katherine810

I posted this to a person on the young peoples forum, but i really want to post it here too, am i the only one out here feeling like this?

(Info i've had arthritis for 12 years, for 10 of those i've been on MXT for about 2 years i've been on enbrel, i take indomethican and ibprofen also, my blood tests show an ESR of just over 20, so my arthritis is pretty settled at the moment - according to the test anyway..)

I'm 16 years old, and can no longer bend my knee... It's been almost a year now, and it makes me really depressed at times, i love to do ballet and steps i used to do i now fall to the floor in agony if i try. I'm usually able to cope with pain, i have quite a high pain threshold.

I just don't know what to do, i feel so usless, my doctor won't do anything and i'm struggling, i'm having to learn new ways to do things. (such as get up from the floor on one leg and holiday onto something) When i go down a steep step and forget about my knee, it's not a pretty sight. I really miss being able to kneel on the floor not caring about this knee pain (other arthritis pain really doesn't compare...) Ballet, which is something I love to do very much as a hobby, i had to think about giving it up for the first time a few months ago. I may have to, and that fact is killing me inside.

My parents do not understand how i'm feeling, at the moment ANYTHING to fix it sounds very appealing, which is scaring me. I don't know if there is anything that can be done yet, but i'm only 16 and i can't live with this for the rest of my life i really can't.

I've managed to deal with everything arthritis has thrown me over the past 12 years, but this is too much for me.

Sorry for the rant,

Love
Katherine x

lindalegs

Oh Katherine, I'm so very sorry for you as this arthritis is such an uphill battle at times isn't it? Life just is not fair. I admire you for doing your ballet and not giving up on it.

Have you talked to your consultant about a steroid injection into your knee - it may help to hit things on the head for a time?

I'm sure, after having it for all these years you've tried all the usuals for your knee as in ice/heat packs etc.

Don't give up - it will get better, I promise, I've had this bu*ger for 23 years and know when it bites it bites bad.

Try to keep your chin up, we know how you feel.

Luv Legs

valval

hi i feel 4 u u must tell your parents how bad u r feeling they prob putting on a good face 4 u to try to help u stay positive, as a parent know how hard it is to get the balence right they might feel they r doing what is best 4 u but u r old enough to have a mind of your own so sit them down and talk to them. u need help and should not b in so much pain. keep up with exercise if u can u sound a lovely well balanced person so keep smiling hope things better soon
val

eastmidlandsman52

Hello.I'm 55 and sending you a really BIG cyberhug and hope it'll help on your bad day.

I would have expected your GP to at least send you for an x-ray to eliminate the possibility that it may not just be the 'arfur' that is causing your pain. 'Arfur' isn't the only cause of knee pain you know. I do urge you to go back and get an x-ray done to determine the actual cause since its important for you to know whats happening in your knee. Please don't be fobbed off by an unsympathetic GP any longer.

There are a few things you might like to try to ease the pain of having to use the knee when its bad.I suggest you get a 'grabber' similar to those used by street rubbish collectors.If you drop something,and instead of bending down to pick it up,reach for the 'grabber' and pick it up that way.Its less pressure on your knee and will save you being in pain from such a bend.

If you have to go up a flight of steps,lead only with your good leg and follow it with the bad one doing only one step at a time which would save extra pressure on the knee in your bad leg.When you come down a flight of steps,come down backwards again leading with the good leg and followed by the bad one doing only one step at a time.If you live in a house,ensure you have two hand-rails on the stair-case adjusted to a comfortable height for you.

If you still want to sit on the floor,I suggest you have a foot-stool nearby.When you want to get up,turn over onto both knees,put both arms on the foot-stool,and use the strength in your arms to get up as far as you can,then only use your good leg to stand upright.This again takes the pressure off your bad leg.

I would also suggest you leave the ballet off for a while.If you're dancing on an already bad leg,you run the risk of further damage and inflaming the 'arfur' more than you need to. I would lastly suggest a cold-pack such a packet of frozen peas.The packet of frozen peas could be moulded around your knee and help reduce the swelling.I would suggest 10mins on (with a cloth between your knee and frozen peas) and 10mins off. If you can do this a couple of times a day,it should help reduce the effect of the pain.

I come back again to the knee pain itself. There are many causes other than 'arfur' in the knee. Unless you have it x-rayed to determine the actual cause,and with which to eliminate other physical problems such as kneecap misalignment, torn ligaments and torn tendons etc,you and your GP may well be under the misapprehension that the pain is 'arfur'. So,go back to your GP urgently,and make sure to take a responsible adult with you,and get the x-rays you need to determine the cause.

I really do wish you well and hope that my reply will at least go some way to making a grim situation a lot better! All the best.

katherine810 wrote:

I posted this to a person on the young peoples forum, but i really want to post it here too, am i the only one out here feeling like this?

(Info i've had arthritis for 12 years, for 10 of those i've been on MXT for about 2 years i've been on enbrel, i take indomethican and ibprofen also, my blood tests show an ESR of just over 20, so my arthritis is pretty settled at the moment - according to the test anyway..)

I'm 16 years old, and can no longer bend my knee... It's been almost a year now, and it makes me really depressed at times, i love to do ballet and steps i used to do i now fall to the floor in agony if i try. I'm usually able to cope with pain, i have quite a high pain threshold.

I just don't know what to do, i feel so usless, my doctor won't do anything and i'm struggling, i'm having to learn new ways to do things. (such as get up from the floor on one leg and holiday onto something) When i go down a steep step and forget about my knee, it's not a pretty sight. I really miss being able to kneel on the floor not caring about this knee pain (other arthritis pain really doesn't compare...) Ballet, which is something I love to do very much as a hobby, i had to think about giving it up for the first time a few months ago. I may have to, and that fact is killing me inside.

My parents do not understand how i'm feeling, at the moment ANYTHING to fix it sounds very appealing, which is scaring me. I don't know if there is anything that can be done yet, but i'm only 16 and i can't live with this for the rest of my life i really can't.

I've managed to deal with everything arthritis has thrown me over the past 12 years, but this is too much for me.

Sorry for the rant,

Love
Katherine x

vonski

Hi Katherine

I'm so sorry you are feeling down right now, you have been so strong for a long time, longer than many could manage. I'm sure you will find that strength again but you could do with some help. Speak to your Dr. or Consultant about a pain clinic appointment if you don't go to one already. They do allsorts of things including injections which might just give you the chance of less pain. They can also help with meds, maybe you are due a review.

Try sitting your parents down and telling them how you feel and how it affects your life. They might need a bit of a nudge if they are used to seeing you cope with it all.

Keep posting on here, that helps when you talk about it.

Love
Vonski x

skezier

Hi Katherine,

I am sorry you are feeling so down, and it must have been hard to have had it all go wrong with your knee. I can't really add much to the advice given to you in the other posts but I do think it is a very good idea to talk to your parents and see if they can understand how you are feeling.

I think that having the injection into your knee could well be a good idea and if you just stop doing your ballet for a min or two till it settles then maybe you will be able to take it up again when you have given it a chance to all settle down. I hope it soon does.

You take care and come and tell us how your getting on. Cris

woodbon

Hi Kathrine, I'm so sorry you are having so many problems and so much pain. As the others say, let your parents know how you feel. I'm sure they will help and support you. Also talk to the doctors treating you, and tell them how you really feel, they may have missed just how much of an effect this is having on your life. I really hope you can sort out things to give yourself a better life with more fun and less pain.
I send you lots of love and good wishes, Sue

elnafinn

Hi Katherine

I am very sorry to hear that you are having to go through all this at such a young age. As others have said you can have an injection in the knee which may help. Worth a try. If your knee is swollen could you not get your rheumy to aspirate the fluid. This would ease things perhaps.

You only mention your doctor, do you see a rheumy, rheumy nurse or a consultant? If not, I think you should be referred by your gp. You can ask to be referred. Pain clinic, as mentioned is a good idea too.

Are you getting on with your parents at the moment? If not, have you any other family member that you can talk to about this?

You have been very brave to have all this going on in your life. You do need to really talk with someone who will help you and go along to appointments with you. Two heads are better than one, in situations like this.

I hope you get something sorted soon,

Luv
Elna

Wonkylegs

Hi katherine,
& welcome to the forum ..... but so sorry that you need it/us!

I can empathise with your frustration about your knee - mine is not good right now after a period of being quite good, and I am revisiting all the frustrations all over again.

Have you ever contacted the Arthritis Care helplines to talk about your worries and problems? If you haven't I would urge you to do so. They are all people with arthritis, who understand what life is like for us. Also, they can put you in contact with others forums etc that work with younger people with arthritis.

Their number is at the top of this page. if you can't get to phone them when they are open (between 10 am & 4 pm) then you could post a thread on the 'chat to helplines' forum, or send them an email.

Also, there is a different helpline dedicated to younger people and children with arthritis. They can be contacted By phone: 0808 808 2000 (10am-4pm weekdays)
By email: TheSource@Arthritiscare.org.uk
By letter: The Source, Arthritis Care, 18 Stephenson Way, London NW1 2HD

hope that helps!

and something i find that helps me is to try to make a joke of things that bother me, to make myself laugh even if I am crying inside (have you noticed my username? )

keep smiling if you can!

frogmorton

Hi Katherine
(did I just reply to your post on working matters?!)
I agree with the others that soemthing CAN be done - e.g. steroid jab or something like that.
It's terible to think of giving up your ballet. It is so good mentally to dance isn't it?
Have they (being medical persons) looked into it properly and said whether there is anything that can be done? All scans etc done?
Kathereine - don't give up - get back and try to get them to listen.
Let us know how you get on
Take care
Toni x

mellman01

Hi Katherine don’t worry about ranting I do on a regular basis so much so my wife takes no notice now!, regarding one aspect of your predicament It sounds to me one of the first things you should do is find another GP at your surgery, go on the surgeries web site make a list of all the GP’s and then cycle through all of them if you have to until you find one who is more understanding and proactive towards your illness then move to them, remember you don’t have to put up with a sub standard treatment, the power is in your hands girl, anyway GP’s are only human after all some I’ve found were absolute rubbish but others I’ve come across through the years could be down rite insulting, if they are I don’t bother with them I simply go to see another, I understand about the pain you are feeling when it comes to your love of ballet but I don’t know what to suggest, all I can say is I have had the same thing happen to me and it really sucks so I do sympathise with you on that, but please remember your NOT on your own with this, we are all here for you your when you need a chat or a moan OK.

sharmaine

Hi Katherine

I know what it feels like to have a dodgy knee. (I have 2 that are bad). When I bend down it is also a performance to get myself back up. I haven't been able to bend my knee for nearly five years! The specialist told me today it is complete shot! Which explains a lot. I'm getting about with a walking stick but it is hard getting up and down the stairs.

Go back to your GP and tell them again about your difficulties- you are too young to suffer alone. Tell your folks too.

Take care and let us know how you get on.

katherine810 wrote:

I posted this to a person on the young peoples forum, but i really want to post it here too, am i the only one out here feeling like this?

(Info i've had arthritis for 12 years, for 10 of those i've been on MXT for about 2 years i've been on enbrel, i take indomethican and ibprofen also, my blood tests show an ESR of just over 20, so my arthritis is pretty settled at the moment - according to the test anyway..)

I'm 16 years old, and can no longer bend my knee... It's been almost a year now, and it makes me really depressed at times, i love to do ballet and steps i used to do i now fall to the floor in agony if i try. I'm usually able to cope with pain, i have quite a high pain threshold.

I just don't know what to do, i feel so usless, my doctor won't do anything and i'm struggling, i'm having to learn new ways to do things. (such as get up from the floor on one leg and holiday onto something) When i go down a steep step and forget about my knee, it's not a pretty sight. I really miss being able to kneel on the floor not caring about this knee pain (other arthritis pain really doesn't compare...) Ballet, which is something I love to do very much as a hobby, i had to think about giving it up for the first time a few months ago. I may have to, and that fact is killing me inside.

My parents do not understand how i'm feeling, at the moment ANYTHING to fix it sounds very appealing, which is scaring me. I don't know if there is anything that can be done yet, but i'm only 16 and i can't live with this for the rest of my life i really can't.

I've managed to deal with everything arthritis has thrown me over the past 12 years, but this is too much for me.

Sorry for the rant,

Love
Katherine x

katherine810

eastmidlandsman52 wrote:

Hello.I'm 55 and sending you a really BIG cyberhug and hope it'll help on your bad day.

I would have expected your GP to at least send you for an x-ray to eliminate the possibility that it may not just be the 'arfur' that is causing your pain. 'Arfur' isn't the only cause of knee pain you know. I do urge you to go back and get an x-ray done to determine the actual cause since its important for you to know whats happening in your knee. Please don't be fobbed off by an unsympathetic GP any longer.

There are a few things you might like to try to ease the pain of having to use the knee when its bad.I suggest you get a 'grabber' similar to those used by street rubbish collectors.If you drop something,and instead of bending down to pick it up,reach for the 'grabber' and pick it up that way.Its less pressure on your knee and will save you being in pain from such a bend.

If you have to go up a flight of steps,lead only with your good leg and follow it with the bad one doing only one step at a time which would save extra pressure on the knee in your bad leg.When you come down a flight of steps,come down backwards again leading with the good leg and followed by the bad one doing only one step at a time.If you live in a house,ensure you have two hand-rails on the stair-case adjusted to a comfortable height for you.

If you still want to sit on the floor,I suggest you have a foot-stool nearby.When you want to get up,turn over onto both knees,put both arms on the foot-stool,and use the strength in your arms to get up as far as you can,then only use your good leg to stand upright.This again takes the pressure off your bad leg.

I would also suggest you leave the ballet off for a while.If you're dancing on an already bad leg,you run the risk of further damage and inflaming the 'arfur' more than you need to. I would lastly suggest a cold-pack such a packet of frozen peas.The packet of frozen peas could be moulded around your knee and help reduce the swelling.I would suggest 10mins on (with a cloth between your knee and frozen peas) and 10mins off. If you can do this a couple of times a day,it should help reduce the effect of the pain.

I come back again to the knee pain itself. There are many causes other than 'arfur' in the knee. Unless you have it x-rayed to determine the actual cause,and with which to eliminate other physical problems such as kneecap misalignment, torn ligaments and torn tendons etc,you and your GP may well be under the misapprehension that the pain is 'arfur'. So,go back to your GP urgently,and make sure to take a responsible adult with you,and get the x-rays you need to determine the cause.

I really do wish you well and hope that my reply will at least go some way to making a grim situation a lot better! All the best.

katherine810 wrote:

I posted this to a person on the young peoples forum, but i really want to post it here too, am i the only one out here feeling like this?

(Info i've had arthritis for 12 years, for 10 of those i've been on MXT for about 2 years i've been on enbrel, i take indomethican and ibprofen also, my blood tests show an ESR of just over 20, so my arthritis is pretty settled at the moment - according to the test anyway..)

I'm 16 years old, and can no longer bend my knee... It's been almost a year now, and it makes me really depressed at times, i love to do ballet and steps i used to do i now fall to the floor in agony if i try. I'm usually able to cope with pain, i have quite a high pain threshold.

I just don't know what to do, i feel so usless, my doctor won't do anything and i'm struggling, i'm having to learn new ways to do things. (such as get up from the floor on one leg and holiday onto something) When i go down a steep step and forget about my knee, it's not a pretty sight. I really miss being able to kneel on the floor not caring about this knee pain (other arthritis pain really doesn't compare...) Ballet, which is something I love to do very much as a hobby, i had to think about giving it up for the first time a few months ago. I may have to, and that fact is killing me inside.

My parents do not understand how i'm feeling, at the moment ANYTHING to fix it sounds very appealing, which is scaring me. I don't know if there is anything that can be done yet, but i'm only 16 and i can't live with this for the rest of my life i really can't.

I've managed to deal with everything arthritis has thrown me over the past 12 years, but this is too much for me.

Sorry for the rant,

Love
Katherine x

Sorry, to clear some things up i haven't said..
Thankyou for the cyberhug
It's my consultant, i never go to my GP.

He said he'd send me for an x-ray a couple of months ago, then forgot to send the appointment through, then decided that an x-ray is no good, so he said he'd end me for an mri scan, a month later and no appoiment letter, so i asked mum to ring him up and ask (she was reluctant as she thought it was a bit rude) but she left a message and he phoned me back the next day! Aparently the appointment was last week and i'd never recieved the letter! He has been amazing and got me another appoiment so all is looking up.

On the ballet note, i have my grade 4 ballet exam in a couple of weeks so i'm having to train pretty hard, but i just about know my limits (i say this, i know them but then push them and take a load of painkillers to make up for it the next day) After the exam, i'm not doing any more lessons until september, so maybe things will be sorted by then... i hope.

Steriod injections... i had them in both knees a few years ago, when i was at Great Ormand Street, back then i didn't really notice the swelling in my knees being so young, i didn't know what all the fuss was about... to have that doctor back now, when i actually know my knee isn't right would be amazing. Sadly i'm now 'too old'.

I feel bad about ranting about my doctor now, sometimes the pain just gets to me and i take it out on everyone.

I'm going to read the rest of the posts now, everyone is so lovely for replying, thankyou so much. The support here is incredible.

Love
Katherine xx

suncatcher

You rant away girl. Its no good keeping it in tell your parents how you are feeling and dont worry about having a go at doctor they have heard it before and they need telling.
Just take things easy i hope you do well in the ballet but be careful get your docs to check the knee out i hope you will feel better soon from joanne

skezier

Hi Katherine,

Hey we rant at doctors, consultants and the world! So you do the same any time you need.........

Hey good luck with your exam and I think at your age your right.... Know your limits, don't push too far beyond them and maybe once you have the MRI you will be able to get something to help your knee. Just don't you go over doing it Take care and glad your feeling a bit less down. Cris x

vijaysa

Hi
Sorry to hear that your knee is so painful. I know how it feels I just had mine drained of fluid yesterday and had a corticosteroid injection in the knee and both my shoulders. the knee feels so much better, i can bend it this morning. Getting off the floor is hard but I get onto my hands and knees and use a chair to hoist myself up if my shoulders are working. You are very brave young lady having lived with this for longer that most of us. i know how frustrating it is to not be able to do things that you want to do, sometimes just ranting about it helps so go ahead. the nice thing about this forum is everybody understands unlike other people who just think you are complaining. Do not be afraid to talk to your parents and your dr. Drs are there to help even if they sometimes seem a bit blasé they see so many patients that are often so severe. Always ask again until you get some help or an answer. Good luck with your ballet exams. Your determination and drive is amazing. Do not let anything change that. Vijay

dachshund

Hi Katherine.
Try not to worry.
have you tried using a thick piece of sponge under your knee when you get up of the floor i do it if i have to kneel as i have a artifical knee.
i had a mri scan this week it's a bit noisy but as long as you find out what's wrong it's worth it.
take care joan xx