New referral to rheumatologist

lozza812

I've had osteo in my right knee for some years, following a misdiagnosed displaced knee cap, some 22 years ago.
I've suffered with pain for what seems like forever, I've had 4 'clean up' ops on my right knee and 1 on my left.
Because of the way I walk I now how bony spurs in my right hip and bursistis.
Left knee now on the way out as well. Had loads of steroid injections to right hip :? and I'm on Naproxen and Tylex for pain. I've been told that my knee needs replacing now, but they wont do it till I'm 50.
Some days I just want to lie down in a quiet place and drift away...
Went back to the Docs yesterday because I am getting muscular pain that feels like bruising and cramp, although the muscles seem relaxed. It gets worse at night and driving is becoming impossible.
I sometimes feel as though the plug has been pulled out, I can be walking (as normally as I can do) and suddenly feel like I cant pick my foot up for the next step.
Doc has taken loads of blood tests and referred me to a rheumatologist.
I thought they only dealt with rheumatoid arth?
Can anyone tell me what they are likely to do.
I could do with someone offering a little hope , because at the moment there feels like there isn't any.
I know this is a very pathetic post, but I feel pathetic today..

dreamdaisy

Everyone here has their pathetic days, you don't need to apologise. Welcome to the forums!

You say you have had osteo in your knee - is that osteo arthritis? If so, you should have been seeing a rheumatologist long before now. They deal with all types of arthritis and there are many.

I have Psoriatic Arthritis which is now in my toes, ankles, knees, sacro-iliac joints, fingers, wrists, shoulders and jaw. It's not in my hips and spine - yet! I have been on crutches since 2002, I cannot walk unaided and I think that because of them I have avoided any further complications with spurs etc. which is a good thing. I have had two open synovectomies on my left knee, leaving it next-to-useless as a limb, and one closed on my right. Pain in all my joints is now constant.

If you are struggling with walking then the first step (ha-ha) is to get a walking stick or two - crutches give much better support but they do tend to shriek DISABLED. I no longer care about such things but I do remember the days when it mattered.

Start a list of the difficulties that you are facing. Note where it hurts, when it hurts, when it started hurting, if certain activities make things worse, what you find hard to do, anything you can think of because when you meet the rheumatologist it will give him a complete picture of you. Note whether the tablets you have been taking have made any difference (Naproxen has given me tinnitus and constant oral thrush but done bugger all for the pain and inflammation). There are many meds available to arthritis sufferers but it is a case of 'suck it and see' until you hit upon the right combination for you.

Don't be afraid to tell us how you are feeling. We've all been there, done that, we know how rough the rough times can be. Other people will be along soon, I'm sure, woth their advice. Keep in touch and do let us know how you get on. Dreamdaisy

woodbon

Hi, Don't worry when you have a bad day, its only natural when you'r in pain and sometimes the pain comes at a time when you'r stressed from other things, which makes you more likely to suffer pain and its a like being on a round about thats hard to get off.

At least your GP has referred you to the rheumatology dept and they will be able to see whats going on and give you the correct treatment and hopefully you will start to feel a bit better.

I have OA in my neck and spine and some other joints and I use a walking stick when I'm out and about as it helps. I have found that it helps people to see that you need a bit of extra help. I've had heavy shop doors help open, Mum's telling little children to be careful not to bump into me and knock me down and help reaching high things in shops!!!

I hope you soon begin to feel a bit better, love Sue

frogmorton

Hi Iozza



Think I would be feeling pathetic too

You have had a rough time havent you? Rheumies do see you for other problems other than OA so dont worry you wont feel out of place.

Probably he will do bloods (AGAIN) xrays and examine you - so wear decent drawers

Serioulsy though I hope you are using a stick in case you have a fall?? At the mo - things sound quite unstable joints wise.

You take care and keep posting

Love


Toni xx

elnafinn

Hi Lozza

Although DD says that you should have been seeing a rheumi already, that is not what happens in my part of the country, the south East, and for quite a few others who are dx with Osteo Arthritis. We stay with our gp for meds and can be referred for physio, pain clinic, and to a orthopaedic surgeon as and when. I was only referred to a rheumi when a consultant wanted me to be checked for RA, blood test came back positive and this was after years of being dx with OA... on seeing the rheumi, he aspirated my knee and said that the fluid was not the correct colour for RA, so OA is what I had all along. :roll: I only saw the rheumi because my bloods came back positive so never saw him again after that appointment.

It does seem like the way forward for you is a TKR and if you shopped around, y ou would probably find a surgeon that would do it for you, earlier than 50.

I hope things sort themseves out for you. If you have been referred to a rheumi, did your one of your blood tests come back positive for RA perhaps?

Luv
Elna x

lozza812

Thank you both, I feel a bit of a fraud with just my bad knee and stuff when there are so many others out there far worse than myself.
I wish I'd found you guys a lot earlier, perhaps I would have been a bit more assertive with the Docs..
My first op and diagnosis was 6 years ago and I only got really stroppy this time round because I went to see the doc as the meds do not work, so he took me all off them and gave me a sports massage gel!!
When I got over the shock I went back and tore a strip off a different doctor who has made the referrals.
My previous surgeon had said that if it was up to him he would just replace the knee joint, but my op was one of the 'cut price farmed out to the private sector' ops and he could not perform that op.
I got down today because I went out for a meal last night and I can barely walk today. Its such beautiful weather and I was planning to gop to the coast, but I cant bear the thought of getting in the car..
Ho Hum, off the the garden with a glass of lucozade instead (my little guilty pleasure...)

lozza812

And by the way - I don't use a stick.... I'm trying very hard to cope with my job at the moment and using a stick would cause me some problems...
I'm a police officer, and whilst I am on restricted duties (not allowed to fight anymore) I run a prisoner handling team and taking a potential weapon into the cell block could be a big problem.
Quite apart from the fact I would probably lose the thing anyway or cause serious injury by leaving it lying around.

That being said, perhaps the referral will come up with something and if I have to lose what little is left of my pride then I will have to.

PS. Havn't had blood results yet, so watch this space

dreamdaisy

I have a friend who has just been diagnosed with OA, she's a coppper too. She's based in Colchester and now has something to do with organising line ups and doing photo-fits (she's very coy about her work, for understandable reasons). I can see why a stick isn't an option for you at the mo, work-wise, but do consider one for off-duty times, they do make a difference. Pride is the first casualty of arthritis!

We don't have competitions on here about who is the worse off. We all have different problems, different tolerance levels for pain and frustration, different ideas about what is a successful treatment and what isn't. I joined fairly recently and the support and encouragement I have had has been incredible. There are some fabulous people around here, even at four in the morning!

It took ages for my doc to refer me to a rheumatologist - in fact, on reflection, she didn't! I was having such trouble with my left knee I went to see the physios at our local (then Premier Division) football team. I met one - he was so amazed by what he saw he called his colleagues in and they took photos! - and he referred me to the hospital. I spent a year being bounced (gently) between orthopaedics and rheumatology - I should have been more demanding but back then I naively thought that people were doing their jobs. Soon learned from that mistake!

I vaguely remember walking without stabilisers. If you want to keep that ability start agitating! DD

frogmorton

Hey Iozza

I am very pleased to hear that you have stopped fighting

bad habit fighting

Enjoy your lucozade

Love

Toni xx