Living with Arthritis at 21

amielizzie

Hi,
My name is Amie and i'm 21, i suffer with arthritis in my left ankle. I developed arthritis when i had an accident over 5 years ago now where i broke my leg, ankle and dislocated my foot. After 3 operations i'd developed severe arthritis by the ages of 17 and a half. I never really felt anyone understood just quite how much pain i was in apart from my Mum but she was still shocked to see the xrays of my arthritis development. My Mum has been my real rock through these past 5 years, she understand how hard it is for me and is always there when i feel down about it. I don't know how i would have coped at all if it hadn't been for her.
My Mum and i then did research into all different kinds of therapies and tried them all osteopathy, physio, vitamins, all different kinds of painkillers and it's just not helping me! It's so difficult to describe the pain, the joint i use the most out of anything has become the most painful thing i've ever experience both emotionally and physically.
I'm on tramadol painkillers at the moment which help but the only way i can get real relief for a brief time is when i take tramadol, paracetamol and iboprofen. At 21 sometimes i get so down when i take a moment to think about how my life has changed, i can't do any sports, i can't walk for any more than an hour without being in severe pain and after 7 operations now I just feel at a loose end. The only procedure i have left is Ankle Fusion surgery and i was just wondering if anyone had been through it and could make me feel a bit better about choosing this option? Obviously at 21 i want to get my career started as i've just graduated uni but i'm struggling more and more to be able to get out of bed in the morning. I would just like some support from people who know what i'm going through. This is the first time i've tried talking to a support group or anything like that.
Thanks =-)

tjt6768

Good morning hun, sounds like it's been a rough few yrs for you.
Well you're in the right place for understanding folk. If I remember right there are at least a couple of people on here that have had the fusion or waiting to have it done.. Hopefully one of them will be along at some point to give advice.
I just wanted to welcome you to the forum.. It's a great place for learning about the old arthur itis...
This section is the best for advice etc, there is a young persons section too.. also the chit chat section is great for a natter etc etc.

Be well, hope you're not suffering too much today..

julie47

morning amie and welcome to the forum
I hope you get the advice you want from this forum, I can't help sorry I have RA. I got that at the age of 25 after having my baby.(i am now 47)
.
I hope that you can come to a decision about the fusion and if you have it done it makes life easier for you.

keeping my fingers crossed for you
take care and keep in touch
juliepf x

meanyjarReA

Although I am not quite as young as you I do feel a bit bitter about the age I am and having to live with ReA. I was 27 when I was diagnosed, now am 29. So kind of understand where you are coming from.

My ReA came on suddenly too and spread over my body very quickly. Luckily, like you, my Mum came up trumps and she still does. It helps that she has RA so can empathise with me greatly. She has supplied me with inflatable medical beds, medical insoles and the best memory foam mattress topper in the world!!

I sincerely hope your arthritis calms down and you find the right solution or medication.

I will just say though....be careful when coming off tramadol, I believe they are in the heroin family. I went cold turkey and spent three days with my body convulsing! A bit stupid of me but I didn't know at the time!

skezier

Hi Amielizzie,

Welcome to the forum flower but sorry you have had to find us.

I know what it is like to have the bone thing impact on your life young and its horrible especially when all your mates are doing what you want to do and can't but someone here ( I can't remember who but think it might be Alanmancunian?) has had ankle fusion and will possible see the thread and come in and tell you about it.

its sometimes a good thing long term to have a joint fused.... it can make it a lot stronger and take away so much of the pain.

I really hope somebody who knows will come in soon for you. nice to meet you and hang in there flower. Cris x

gemmapetken

Hi
I (like Jean Mary) was diagnosed at 27 and am now 29 (30 in july), what a coinsidence!! I have RA in my hands and feet and it has gotten so much worse in a relativley short space of time. I have the Butran pain patches (morphine) which help a lot, they really take the edge off and I can control the rest through tramadol and amatryptilyne at night!
If you are in so much pain you need to see your GP and ask to be refered to a pain clinic as these wll help greatly!!

Good luck and chin up!!
Gxx

sturge8

Hi, I am 30 and was diagnosed with post traumatic oa in my right ankle a couple of years ago. I've had one ankle scope, 2 prolo injections 1 steroid injection and 2 ha injections. Out of my mentioned treatments, I found the HA injections the best, try them, they could work for you. I am also waiting to try MBST therapy, which could be something else you can try. Fusion is regarded as a last resort. pm me.

frogmorton

Hi Amie

I am so pleased to meet you.

You have my total sympathy - your post is so well written and a testament to how well your Mum has brought you up - I am so glad you have her.

There are guys on her who have had ankle fusion and judging by the level of pain you are experiencing you have to give it serious consideration of course. You do have to consider your future career and living with contsant pain does not make working so easy.

A fair few of us can sympathise with having health issues very young including myself having back problems.

I hope you get a good response to this thread but have bumped up a similar one which might help?

Love

toni xx

spacey

Hi, my joint pain started when I was 23 years old. It coincided with another auto immune disease which thankfully following surgery is easier to cope with. I am now, 11 years on, finally recieving treatment. I have only recently joined this group after being diagnosed and have found it so helpful and informative.

dreamdaisy

You poor girl, after all those ops etc it's no wonder you are feeling so down. Fusion may well be the 'last resort' but it could also be the best option for you: everything else has not been successful and it may mean a more comfortable life. You are so very young to be facing this, don't rush into any major decisions and I sincerely hope that something can be done. I wish you well. DD

amielizzie

I can't express how grateful i am to be talking to people who are experiencing arthritis and are so sympathetic to my condition. I know how hard it is to get by everyday and put on a brave face and everyone who has posted so far is doing that by helping me out so it's truely a testiment to you guys for your kind hearts
I was quite scepticle about joining and posting as you are never sure what replies you are going to recieve. I want to thank everyone who has replied so far! I don't feel as though i'm alone anymore! Everytime i have a bad day i can post and there are people to help and sympathies. I can also do my bit to help others out there with treatments and pain mediation i have tried and tested, which is A LOT lol. So thank you to everyone who has replied so far! Just knowing that everyone cares is enough to make me feel that bit better =-) i'm really thankful i joined this forum! I hope people keep posting and lending me their tricks for pain medication and treatents even if it isn't directly related to ankle arthritis.

Amie
X

dreamdaisy

Given the fact that all of us on here struggle on a daily basis with the vagaries of this pernicious condition (in all its guises) we are a surprisingly lovely bunch! Seriously girl, we do know what it is like, we can empathise, we do understand, and we know our stuff. It's nice to have you with us but it's a shame you had to join. Life is not fair - but then who ever said it would be? DD

alarkra

Hi Amie,

I have RA which affects all of my body so unfortunately cannot offer any advice for your particular problem. However, what I can say, is that the AC is a wonderful forum. There are so many people here to listen to you, empathise and support you. I am 25 and was diagnosed with RA back in July (the day after my birthday - the timing was not terrific!). All I can say is that this forum is a wonderful place for support and it honestly has helped me through the rocky times I've been through recently - when you are low there is always someone here who completely understands what you are going through, so I hope that you stick around and feel you can tell us how you are feeling on the good and bad days, there is always someone here to listen. :P xx

suzygirl

Hello, I just wanted to reply to your post. You have done amazingly well to have coped with all those ops. Chronic pain grinds you down. I have inflammatory arthritis and having my worst flare yet at the moment. The pain has been driving me out of my mind. It is horrid. I have it in my ankles, as well as other joints, and when I watch my sons footie match in the cold, the pain when I come into the warm, brings tears to my eyes. It can drive me to bed, it s that painful. I just wanted to explain that I understand.

I have no advice on ankle fusions unfortunately. I do know that arthritis forces us to make difficult decisions. I am 38 and think its unfair, so 21 is definitely unfair!!!

You seem a positive person who has great strength. Your mom sounds great as well. I hope it all goes well for you.

ironic

Hi Amie,
It’s nice to meet you. I am so sorry that you have had such a bad time of it. Your mum sounds brilliant.
This is a great place to let off steam. They are a great bunch on here.
I think you will be a great help to people on here due to your experiences. So sad that you have had so much to cope with. Even more so at such a young age.
I take it that you have tried insoles etc. Probably a stupid question to ask.
Yes keep posting and welcome once again.
Lv, Ix

cathhankin

Hi Amie,
i just wrote a rly long reply then the page decided to play up and it all disapeared! lol.
anyway, i'll try and remember what i wrote.
i was diagnosed at 15, and am now 24. I too had arthritis in my ankles, and it was so so painful, in agony when walking and such a burning sensation. however, that seemed to go away and i knowhave RA in my knees and wrists ( i have it all over, but those are the worst). although times were hard, i managed to get my GCSEs, A levels , Degree in Teaching and now a job ( not teaching however as this turned out to be too stressful) i'm a TA and love it !! Just shows that no matter what life throws at you, you find sumthing in you to keep you going.
i agree about your mum too- my mum is a star!! she became my carer for a while and a good job she did too ! ensuring i didnt have the chance to get too down about my condition and keeping me busy . mums are just great at reading the signs. however i moved out 2 years ago with my fiance and we get married in November He is the best . i never thought i would get married, thought all men would think i was too high maintenence cos of my condition. but Andrew just took it in his stride and knows when im having good and bad days.
i joined this site as i wanted to speak to more ppl my age with RA, as i felt like i was the only one out there lol. There are loads of nice people on here and lots of helpful advice when you need it
where are you from in the UK? im from Wigan, nr Manchester.

Hope to speak soon x x

amielizzie

Hi ironic,
Yeh I have insoles in all my shoes especially the flatter ones. I find that heels are really effective in stopping my limp as your ankle doesn't really move much in high heels. It used to be a problem because i got blisters from high heel shoes but now i find really comfy ones and strut around in them!
I've just got home from work, i work for an events company which is a lot of fun and luckily my managers know and understand about my condition so whenever i'm in pain they let me take however long i need to recooperate or they let me go home early!
I'm very lucky in some respects to be surrounded by people who are very generous and understanding to my condition. At such a young age i've found it important to make people understand my condition early on into any kind of relationship as it's such a bit part of my life, i'd recommend that to any new sufferers to make sure you tell the people you are closest too just how much you are effected by the pain so if you're grumpy or down they can be a pillar of support.
The good thing about what i've gone through is it's been so long and such a rollercoaster (corny line i know) i've become used to the pain and dealing with it, the initial bitterness has decreased a lot, i always think "it could be worse" and it gets me through. Even though we are all sufferers on this forum and it's a shame we're here, we've all come together to support and be supported =-) You've always got to think of those worse off!

dreamdaisy

The pink is pretty but being an aged and haggard old crone with rheumy eyes, I cannot read it properly. It sounds as tho you have a good attitude - that will see you thro, yes it will flag from time to time but you will perk up again, of that I have no doubt.

Amongst some of us on this forum the attitude is known as a 'cope'. My cope is long, thin, fluffy and electric blue. It does sometimes escape, runs away and hides and leaves me deflated and struggling, but it does reappear, having been refreshed by the care of the wonderful people on here, and he picks me up again. I think you have a good, strong cope: nurture and cherish it! DD

amielizzie

I seem to be having a very difficult few days at the moment, i can't seem to walk anywhere due to the pain which is so frustrating!! Fusion surgery is becoming more of a daily thought!! grrrr! It is getting my quite down!
I've made the mistake of just getting on with it for the past few years and trying not to moan but now it seems that everytime i bring it up it's just getting dismissed which is really bugging me as i only talk about it when i can't cope!! it's one of those moments i have to try and practise what i preach and stop moaning because there is always someone worse off!
Do you ever feel like you deserve a massive moan from time to time! I mean anyone deailng with arthritis is dealing with something truely awful and life changing and at 21 i feel that every so often i'm allowed a small amount of self pity!! People moan about a lot less!! It's just bugging me that no one seems to have the time to listen to how i really feel about it!! Because sometimes when i think about what i'm going through i really do feel robbed of youthful expereinces! I wake up and want to go for a horse ride like i used to or a run but that can never happen! It's depressing and frustrating!! I just feel like sometimes you need to moan or you'll explode and become insensitive to others situations when you can't moan about something more severe than what they're going through so i guess in some ways it is therapeutic to moan right? lol
anyway! That's all! just struggling! Can always talk to my fellow arthritis sufferers and friends =-)
Hope everyone is ok! Cold weather sucks at the moment i'm sure we're all feeling it!

skezier

Hi Amie,

I am so sorry your feeling the strain so young. I do remember well i promise you and well its not easy flower. here you are allowed to moan and they all listen so please know that bit at least.

I know its hard to make these kind of decisions but i wonder if you asked your self a couple of questions i used to use.

Whats the worst that can happen if you have it done and what will happen if you don't. Sometimes that helps.

If it was fused you might be able to ride again (mind ortho's tend to be a bit against riding as I remember... can't think why ) Not sure about running though flower.

Amie I so wish I could make it go away for you but know you can moan and rant here as much as you need. A ((( ))) Cris x

julie47

Hi Aimie
looks like you were having difficulty sleeping looking at the time of your post. you too skezier.
Hope you both eventually got some decent sleep if only for a few hours.
Aimie I am sorry that you still feel down.
making the decision about your fusion is very worrying i know. It is all the will I's. will I be able...... I am having a similar anxiety at the monent as in a few months I am having the odontoid peg (neck) screwed so i will not be able to move head side to side, and all my questions are will i too.
I wish you luck with your decision.
Hope you feel a little better today .
sending a (((((((((()))))))
juliepf x

dreamdaisy

Of course you can tell us how you feel, if anyone is going to understand we will. I think you should find out as much as you can about the fusion process and its likely results - I know that these cannot be guaranteed, but if it is meant to lead to less pain and discomfort then surely that is a good thing. It is a big decision you have to make, and it can only be made on assessing all the available information you can find.

Trying to talk to your family and friends is not a good idea, as they really won't have a clue about what to say or how to help, hence the feeling you have that you are being swatted away like an irritating fly. That is their feebleness, not yours. I don;t have a clue about what you are facing either - every single move I make hurts tho, so I can empathise with that. Is your arthritis just in your ankle or has it spread ealsewhere too? I am sorry, I cannot remember that very important point. :oops: DD

caterina57

Hi Aimee and welcome
Sorry to hear that you are suffering and at such a young age too. Dont worry though you will find lots of support and advice on here - I know I have.

Just take care and if any thing crops up and you need to let off steam just pay us a visit. There is always someone who will respond.

Cath