One step forward one hundred back

Courtney1234

Hi all,

Feeling quite down atm. As most of you know I was on Hydroxychloriquine to help with my symptoms, which I still don't have a diagnosis for. I had to stop taken them back in August as my liver function was 113 (the range was 20-30).

Since then I've been back to see my rheumatologist and she's refused to do any more with me. She's not giving me anymore medication and just told me straight she doesn't know what's wrong. She is not very helpful and is very inconsiderate of my feelings. I am currently waiting for see my GP to ask for a second opinion else where.

I'm due to start hydrotherapy on Monday which was organised by my orthopaedic surgeon and I've been sent for a MRI of my lumbar spine to rule out AS which my auntie sadly has.

As for how I'm feeling, some days I feel like I've been hit by a bus. I'm started to get back stiffness and my buttocks and surrounding bones hurt. My knee is still constantly swollen and forever painful. Feel like I've taken one step forward and one hundred back as I'm back to square one again. I'm only 20 years old and my biggest fear is that I'm going to be discharged from all specialists due to them not knowing what the problem is and I'll be left to suffer. I'm tying to get a direct contact number to my rheumatology nurse as she's the only one I feel I can talk too but i cannot seem to find a direct number for her.

Hope everyone else is doing ok.

[Deleted User]

Hi Courtney,

It's good you are posting and trying to get some control over your life. That was one of the worst things for me, that I was out of control, nobody else was in control (like the medical people who had always said 'go away, take this for so long and you will be better - and you were), and I didn't know where to turn.

My second worst was feeling I was alone.

But for you now, like me, you have faced the problem, and like me, you will get control back, quite soon.

You aren't alone, you have an MRI booked - don't forget to ask for pocket duties - and you have hydrotherapy too. Both of those are great.

Hydro will help the stiffness and pain, and I know this sounds mean but all of us here have to do it, exercise really will help to control joint pain, I do particular exercises every day, not jogging or badminton but stretches to keep my muscles strong and stable. At times they hurt but I know doing nothing will hurt more - I've tried it. Sometimes a joint is especially painful so I go as far as I can so by day 4 I'm back to usual.

You were going to see your GP, that's good. They can organise pain relief and get your second referral to a rheumatologist if you still want to do that. Since you have been discharged by your previous rheumatologist it's probably not appropriate for you to ring the nurse there anyway.

You have a job which sounds like you enjoy a lot, see if there are any 'tweaks' you can make to make it easier on your knee, maybe a stool to sit on instead of the carpet?

What about your friends? You haven't told us about them, what do you do after school?

Remember you can ring our helpline if you want to talk to someone 0808 800 4050

Take care and let us know how you get on

Yvonne x

dreamdaisy

Rheumatology were adamant that I wasn't their problem but finally had to admit I was because my inflammatory markers were so high; what are yours showing? If they are raised then your rheumatologist should not be dismissing your concerns so easily.

The first people to take me seriously were the physios at our local footy club, they were the ones who referred me to orthopaedics having never seen a knee like mine before. I lost another year being bounced between ortho and rheumo so understand how lonely it can be. DD

Courtney1234

dreamdaisy wrote:

Rheumatology were adamant that I wasn't their problem but finally had to admit I was because my inflammatory markers were so high; what are yours showing? If they are raised then your rheumatologist should not be dismissing your concerns so easily.

The first people to take me seriously were the physios at our local footy club, they were the ones who referred me to orthopaedics having never seen a knee like mine before. I lost another year being bounced between ortho and rheumo so understand how lonely it can be. DD

Unfortunately I cannot comment on my inflammatory markers as I have no idea myself. All I know is that when I was taking hydroxychloriquine there was a slight reduction in my white cells which suggested there may have been some improvement (I was only on them just over a month so didn't feel any different. I agree with you on the physio front, my physiotherapist is very support and takes time to explain things to me. He was the one who told my my MRI back in March on my bad knee showed a patella out of place and slight joint change. I was never told this not even my the rheumatologist regardless of how 'slight' they might have been.

Courtney1234

moderator wrote:

Hi Courtney,

It's good you are posting and trying to get some control over your life. That was one of the worst things for me, that I was out of control, nobody else was in control (like the medical people who had always said 'go away, take this for so long and you will be better - and you were), and I didn't know where to turn.

My second worst was feeling I was alone.

But for you now, like me, you have faced the problem, and like me, you will get control back, quite soon.

You aren't alone, you have an MRI booked - don't forget to ask for pocket duties - and you have hydrotherapy too. Both of those are great.

Hydro will help the stiffness and pain, and I know this sounds mean but all of us here have to do it, exercise really will help to control joint pain, I do particular exercises every day, not jogging or badminton but stretches to keep my muscles strong and stable. At times they hurt but I know doing nothing will hurt more - I've tried it. Sometimes a joint is especially painful so I go as far as I can so by day 4 I'm back to usual.

You were going to see your GP, that's good. They can organise pain relief and get your second referral to a rheumatologist if you still want to do that. Since you have been discharged by your previous rheumatologist it's probably not appropriate for you to ring the nurse there anyway.

You have a job which sounds like you enjoy a lot, see if there are any 'tweaks' you can make to make it easier on your knee, maybe a stool to sit on instead of the carpet?

What about your friends? You haven't told us about them, what do you do after school?

Remember you can ring our helpline if you want to talk to someone 0808 800 4050

Take care and let us know how you get on

Yvonne x

Hi Yvonne,

I have taken measures in work to ease the load, I'm starting to sit on chairs more than actually sitting down on the floor. I'm also looking at investing a decent knee support to start wearing during the day time as I'm on my feet all day.

I don't have a large group of friends, and most of my friends are my family. But the ones who I do engage with are very supportive.

What is pocket duties if you don't mind me asking?

dreamdaisy

It was blood tests that finally convinced rheumatology that I belonged to them. My inflammatory markers (ESR and CRP) were checked on more than one occasion and, as they were steadily over fifty, that convinced them that maybe I was their pigeon. I asked what the abbreviations used on my blood form tests meant so I would have some idea of what was being checked; I still do if something different is asked for, that way I can converse with the medicos on a more informed basis. DD

[Deleted User]

Hi,

Pocket duty is when you have an appointment to go to that maybe you aren't looking forward to you tell us so you know we are with you, hiding in your pocket for moral support and strength.

If you look on the Living with arthritis forum you will usually see a few requests.

Happy to be with you
Yvonne x

hileena111

Hi Courtney
Yvonne is right about the pocket duties.
As she says look on the forum and you'll see plenty of people asking.....especially me at the moment.
I've got one in because I have an appointment for tomorrow [mon]
I got a letter from the hospital saying I had an appointment with the elderly medicine dept??????? never heard of that so I'm a bit apprehensive

I'm away for 5 days but as soon as I come back got another appt. This one is with a spinal consultant. I'm at the other end of the age range to you I'm scared about this one in case I have to have a spinal op and something goes wrong|!!!
Anyway thats pocket duties


Love
Hileena

Courtney1234

Hi everyone.

Thank you for all our support and guidance. I've just come back from my first hydrotherapy session-and currently feeling it!!! My knee feels like it's had a good kick to it. Currently got my famous ice pack on to help pain and swelling!

barbara12

Hi Courtney,
I really do feel for you, its horrible when treated like this..like you say they should at least take your feeling into account...it means such a lot when they have a good bedside manner...I do hope you can get that chat with the nurse...the hydro does knock you for six at first but gently does it...x