Inflammatory Arthritis, Sometimes i wish i wasn't alive!

Rhyscous

Hello,

I am 16 years old, 2 years ago i was playing football and i injured my foot, i left it for about 2 months thinking it was a sprain, the pain just semmed to be getting worse, so my mother took me to the doctors and the doctor could see how swollen it was and suspected that i had broken/fractured my ankle, So i had my X-Rays and there was nothing there, i was told i damaged my ligaments and was sent home on crutches for 1 week, i came off crutches and for about 2 days the pain was gone, the pain then came back again and never seemed to go, I was referred to a Sports Injury Doctor and my general hospitsl who sent me off for a MRI scan, The MRI scan came back clear but showed intense swelling around the joints, I was then referred once again to a Surgeon who was also at my general hospital, we had at least 6 appointments with him, The NHS has really messed us around these last few years, finally he sent me off for a CT scan which also came back clear, so then once again i was referred to Addenbrookes Hospital in cambridge and saw a specialist in Tendon and Foot surgery. Cambridge was an hour's drive and we had to do the journey at least 3 times, The first appointment we drove up there for them to tell us that they hadn't recieved my CT and MRI scan from my general and they couldnt do anything, Just shows how good the NHS is. The second time we went up there i had a Ultrasound scan which also showed intense swelling but nothing abnormal, Finally 2 years from when it first happened i found out what the problem is, I have suspected Inflammatory Arthritis and am now in the process of seeing a Rhumeotologist. The pain has been severe for ther past year, its really affected my childhood severely, ive become unsociable, i cant do the things my friends do like play footall, walk long distances and enjoy myself, i sit around the house all day feeling down and depressed, im now having councelling to try and get me out of this hole i feel like im in. What offer can you help me, Ways to deal with the pain, Excercises, Will i be able to run on it, Will i be able to join the army after the treatment has finished? Thank you for spending your time reading this and i hope to hear from you soon.

barbara12

Oh my love I really do feel for you, and if you are new, can I just say a very warm welcome to this lovely forum.
There are many on here with inflammatory arthur, and hopefully soon they will be on to offer you some advice, we also have the young people forum, if you fell like looking in there.
You stay with us, and you will get lots of support, and best of all is being able to talk to people that understand what you are going through.
I do hope you stay with us, and take care of yourself.

elnafinn

Hi Rhyscous

I am so sorry to read your story. I can well understand how you feel. I used to have terrible migraines at your age and younger and my mum told me I used to say "I wish I was dead". I remember how awful it was but do not actually saying that. I am now 60 years old, have pills to keep the migraines away and have Osteo Arthritis, which is kind of under control but am so glad that I am here still.

I think it may be a good idea if you were to call the helplines, the number is at the top of the page. Many of us on the forum have called them and everyone who has, says what a dedicated, brilliant team they are. The lines can be busy so you may have to try a few times. I am sure you will feel better in yourself, after speaking with a member of the team. They will do their utmost to help you.

Look after yourself,

Elna x

Rhyscous

Thanks alot, im just looking for some advice and people who know how i feel, all my friends try to understand but they dont have a clue what its like living with it, would be nice to talk to people to understand

elnafinn

We do all understand on here so you have found the right place. You can call in here and have a rant and we all know where you are coming from. Sometimes it is good to just write it all down and that can make you feel a little better. People on the forum will always reply with help and support.

It is the same old story that often family and friends do not understand. If you do not have your leg in plaster, or arm in a sling, when the pain is not visible people often do not get it or come out with really unhelpful suggestions and remarks. You are most certainly not alone there.

You keep calling in on here as often as you wish, we will try our best to keep you buoyant as we do to everyone on the forum.

Elna x

elnafinn

You could google "the spoon theory". It is worth a quick read and you may find it helpful or useful at some time or other.

Elna x

barbara12

Hi again Rhyscous
I have been on this forum around 20 months, and believe me I was in a right state when I first came on, but with these lovely peeps on here and there understanding, I really have come along way.
And it makes me feel better being able to help others, like I said in my first post, I do think the talking is so important, and a great release.
Take care

elnafinn

Hi Rhyscous

Have you had a look at this section?

http://www.arthritiscare.org.uk/LivingwithArthritis/Youngpeople

There may be something there of help to you.

Elna x

traluvie

Hi Rhys..

I have inflammatory arthritis, am 31 so in my eyes still young, although not as young as you.. i know i am a bit older but i do kind of understand where you are coming from.. I used to be very sociable, ran a voluntary group, assisted in projects in local area, used to be always kicking footbal with the lads and climbing trees with my kids, i used to go out once a month to let my hair down, i worked full time and was loving life.. Now due to how my arthritis has affected me i have had to stop things like you.. It feels like your life is over and you wonder what your future holds...??
I can just tell you how i deal with it, everyone is different..
I take each day as it comes now.. On the days i feel up to something i make sure i do something that will make me happy, instantly lifts my spirit..On the days where i am sat at home, i keep my brain active, be that playing scrabble, reading writing etc..This can obviously get a bit tedious after a while i understand.. I am now looking at doing a course from home, maybe you could think of doing something like that..Is there a local youth place near you where you could go and meet others but be sitting down doing something??Also arrange evenings where your friends come round and see you..I know at the moment you probably do not have a lot of strength to be positive, but for you to try and make something of your life you need to be positive, everyone is different some people do get better, some people don't.. there are many new medicines available and there could be one to suit you..
You are not on your own..

TheOnlyKey

Hey Rhyscous. I have been through the same thing. At 19 I was on crutches for over 8 months. Would never go out or do anything because it was just to painful. My friends stopped coming over and I got to the point where I did not answer my phone. My right foot had so much inflammation I could not get a shoe on. I was in plaster cast for six weeks, I was on antibiotics for 6 weeks with suspected infection, Suspected hair line fracture so was in an Air boot for 6 months. Suspected thrombosis so had injections to thin my blood. Endless blood tests. X-rays, M.RI. Ultra sound. I went from 13stone to 9s 7 at 6ft. I used to box twice a week and train at the gym 3 times a week. 6-a-side on a Sunday. I was in so much pain that on a Friday when I got home from sitting around all day at work, I would lay in bed and did not go down stairs in the house until Monday morning. Loss of apatite. Low blood pressure so when I stood up I went very light headed. I though I was going to be in a wheel chair for the rest of my life and their was no end to it.

I was angry with the NHS for all of the back and forth. Its because their are so many possible causes for your symptoms that they check everything. Because you had a sports injury that’s why they started there. I had a small amount of broken skin from skipping all the time and they thought an infection got in there. And it was a long old garden path. Arthritis can be hard to diagnose. Its why you got messed about the same way that I did.

To the point. I had a hit of steroids in my back side and it was as if nothing was ever wrong with me. The symptoms came back a few years later but were controlled by Anti-inflammatory drugs. Its on and off. But for the most part I can run and play sport. Most of the time. Sometimes it hurts.

When I was at the stage were you are now I felt like giving up. But once they get to the bottom of it hopefully things will be looking up for you. I don’t think you have the same arthritis as me but their will be someone on here that will. Your not alone in what you go through. Far from it. Best of luck with the specialist.

Rhyscous

Thank you for all your help, and to the above poster, you put a smile on my face for the first time in ages, you made me feel like there is some hope and that i could perhaps go back to doing some sport, Once again thank you all, keep the posts coming

traluvie

Rhys

I am glad you are feeling hope already, thats great..
Onwards and upwards lol

Rhyscous

Yes its so pleasing to speak to people who are in the same boat.

pepperflo

Hi rhyscous Welcome to the group, and yes you are in the right place, we all have different age ranges on here, but all here for the same thing.

I remember once saying to a Nurse at my local walk in centre after a week of suffering and hadn't slept for over a week day or night, and after her examining me within minutes she had worked out what was wrong with me. I burst into tears, finally somebody was listening to me, and I said to her " if I didn't have kids I'd do myself in", its just something someone says when they are really fed up, well she admitted me to Hosp they had me on suicide watch, and said she would have to inform my gp of what I had said, but I didn't mean I was going to do it, I was just fed up, mainly due to lack of sleep, and pain.
At least now the ball is rolling and your getting the right tests that you need.
Chin up chick, and good luck x
Pepperflo x

sullivt56

Hi Rhyscous,
You will find endless support and encouragement on this site. The one bit of advice that I would share is this and I understand how difficult it can be. Dont let the condition take control, fight back whenever and however you can. I have Psioratic Arthritis since I was 18 and the last painful flare up led to a diagnosis of bilateral sacrolitis an extremely painful experiance and one which takes time for painkillers to get a grip. It restricts my activities but I try and try to undertake them and am determined to lead as normal a life as possible. People find the condition hard to accept either through ignorance or because they are unable to see something tangible that gives direct evidence of the condition. I have developed the **** them approach. Dont be ashamed or embaressed its not your fault.

Any how starting to waffle, dont give up the fight and challenge the doctors fight for the best treatment plan you can get.

Rhyscous

I planned to go out all of today, was looking forward to it all week, then i wake up with my foot the size of a baloon and in absolute agony, These are the times where it gets me down because all my mates are going to be enjoying themselfs and im going to be sitting here on the sofa all day.

frogmorton

Hi Rhyscous

Sorry l am late reading this :oops:

Things WILL get better now they will.

You need to see teh rheumatologist and hopefully they will help you asap and start you on the right kind of medication for your inflamtory arthritis. I am guessing they were not looking for this sort of this in anyone as young as yourself, but if you look on the young person's forum you are so not alone! Also l expect any bloods they took came back negative as they can...

Anyway a big welcome from me

Hope things get sorted sooner rather than later and you feel much better

Love and hugs

Toni xx

PS Rhs

Just read your addition....poor poor you :sad: l am so sorry that this thing has naffed up your plans.....can you take your painkillers and anti-inflams and go anyway even for just a while? l am CROSS for you :sad:

Rhyscous

Im getting so so sick of taking tablets! The thought of having to take one makes me feel physically sick, cant even swallow ibuprofen anymore

elnafinn

Rhyscous wrote:

I planned to go out all of today, was looking forward to it all week, then i wake up with my foot the size of a baloon and in absolute agony, These are the times where it gets me down because all my mates are going to be enjoying themselfs and im going to be sitting here on the sofa all day.

I am sorry to hear that. Would it be possible to join your mates later on today? Do you use crutches? Even if you are only out with them for a while, it will get you away from the sofa for a time.

Elna x

elnafinn

Rhyscous wrote:

Im getting so so sick of taking tablets! The thought of having to take one makes me feel physically sick, cant even swallow ibuprofen anymore

Yes, it can get like that, especially if they are not really working that well. It makes it seem a bit pointless doesn't it? What meds are you on?

Elna x

Rhyscous

elnafinn wrote:

Rhyscous wrote:

Im getting so so sick of taking tablets! The thought of having to take one makes me feel physically sick, cant even swallow ibuprofen anymore

Yes, it can get like that, especially if they are not really working that well. It makes it seem a bit pointless doesn't it? What meds are you on?

Elna x

Im only on Ibuprofren at the moment, still waiting for my first ever appointment with the rhumeotologist to come through.

traluvie

Hi Rhys..

How about your mates popping round to see you for a bit??

Hope your feeling a bit better later..

tkachev

When you see the rheumatologist you will get better meds. They should make a difference by reducing the inflammation.

My R.A started after jumping on the trampoline. I thought I was doing the right thing by keeping fit and having fun but was then relegated to the sofa and loads of pain. I also had an active social life and it was taken from me. Friends used to come round and tell me all the things they had done and I felt sick from hearing it.But now my pain is under control and I,m out and about again. You'll pick up with your friends again as if you've never been away.

All the best,

Elizabeth

tkachev

If your appointment is a long way ahead phone up and challenge it. Ask for a cancellation slot at short notice.
I really hope you won't have too long to wait.
Elizabeth

elnafinn

elnafinn wrote:

Rhyscous wrote:

Im getting so so sick of taking tablets! The thought of having to take one makes me feel physically sick, cant even swallow ibuprofen anymore

Yes, it can get like that, especially if they are not really working that well. It makes it seem a bit pointless doesn't it? What meds are you on?

Elna x

That ain't good :roll: You defo need more efficient meds. An anti inflammatory for starters, would be a good idea, I would have thought. Can't you ask your gp for an anti inflammatory med and a stomach protector (unless that is built into the anti inflam med) at least in the meantime before your rheumi appointment? We do sometimes have to push for meds and appointments. Should not be like that, but it is unfortunately.

Do you have a date for your rheumi appointment?

Elna x

stickywicket

Rhyscous, I do hope you managed to get out with your friends after all today. I well remember leaning on mine for support as I walked to school & back.

Ibuprofen will work best if you take it regularly but always take it with food as all anti-inflammatories can upset the stomach. If it’s already upsetting yours your GP can prescribe a stomach protecting pill.