Help! understanding diagnosis

beanypie

I have just been told by my GP that i have "moderate to severe" osteoarthritis in my hips. In terms of severity, what does that mean?! Is a hip replacement imminent?!!!!

[Deleted User]

Welcome to Arthritis Care Forums Beanypie from the moderation team

As mods we are here to help with any problems you may have on the message boards.

There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

I look forward to seeing you posting on the boards.

Take care
Mod Yx

hileena111

Hi Beanypie
The first thing is your GP should refer you to a consultant at the hospital. Let them diagnose it.
They are the ones that will know how close you are {if at all } to needing surgery
A lot depends on your consultant, your weight, and your age. Sorry don't mean to be insulting but all authorities are different. The majority of them have an age and if you are under that they will say you are too young
Main thing is get a referral and see what they say. We cant second guess them LOL
There are lots of self management tips to help you
Also when you get a diagnosis you can self refer to an occupational therapist and they have lots of things to help you cope.
I've had 2 hip replacements.
Please let us know what happens
Oh what meds are you on?

Love
Hileena

helpline_team

Dear Beanypie,

Thanks for your post to Helplines. I'm sorry to hear about your hip diagnosis. You might want to talk things over with your GP and mull things over perhaps. Generally there may be an x-ray or scan that's been done and the radiographer has given the wear on the hip a grade. If they can't see much of a joint space then much of the cartilage may have been worn and that may have been graded.

What matters is the functional side of things - i.e. how much pain you have on rest, or in bed, and how affected your walking and standing are. The NICE guidance recommends referral to physiotherapy for those who are newly diagnosed. You might discuss with the physio how well your self management is going. If you do the exercises (lose weight if needed) etc and things continue to be difficult, then the next stage is to be assessed by an orthopaedic specialist.

Age per se is not a barrier to having surgery if it's really needed, so it's worth getting to see a specialist if you reach that stage.

Would you like a pack of our information? If so please send your details to helplines@arthritiscare.org.uk or private message us.

Here's a bit more about self management: http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement
I hope that's helpful.

Guy
Helplines Team

ITLSusan

I just wanted to add a little something that I'd have loved to have heard when first diagnosed.

Hip OA won't necessarily get worse. It can even get better. Don't be frightened out of living. Your hip isn't made of glass. It won't break!

I have a friend that was diagnosed with severe knee OA at age 50. A year after diagnosis he started running again and now at age 55 he's running 100km ultra distance races, racing up and down mountains, cycling around Europe, running 5k in 20 mins - all pain free. It might not work out that way for you, but it's possible that it could. So don't assume the worse.

A big problem when you go in search of info after getting a diagnosis like this is you'll read all the horror stories and worse case scenarios and that can actually make you worse. People who's OA turns out to be a minor glitch that improves to the point that they hardly notice it tend not to tell their story on forums like this. Pre diagnosis I had a bit of a tweak and some inconvenience. Immediately after diagnosis it turned into intense pain. Your brain can make you feel more pain than you should if it thinks the problem is serious.

Xray findings mean nothing. Some people have trashed joints and no symptoms. Others terrible symptoms and perfect joints. Suggesting much is down to soft tissue. So it makes sense to push for the physio referral that guy talks of. That *could* help you lots - especially if you get a really good physio. Sometimes pain can be pretty much eliminated with a bit of soft tissue treatment. Think also of finding a good private physio - often they have broader experience than NHS and can do more to help. It would only cost about £35 - £40 and you'll get an appointment immediately.

Every case is different. The best doc in the world can't tell you how this will play out. Positive thinking can swing things in your favour and at the very least make you happier.

beanypie

Thank you all for your help and advise. I will definitely be seeking out a good physio!

Thank you also for the positive comments - they made me feel a whole lot better and much more positive! As you say, you tend to only read the horror stories, so nice to know that it may not be as bad as I thought!

Thanks again

dreamdaisy

Hello beanypie, I am an ordinary member of the forum who has OA in both ankles and both knees, I remember the shock when I was diagnosed because I already had another form of arthritis: doing the double was the shock.

If you post again on the Living with Arthritis board on here I am sure more will see your post and respond. Many have had replacements and gone on to enjoy a new lease of life, there is life after diagnosis and it can be a good one if one is willing to work at it. I wish you well. DD

ITLSusan

You're very welcome beaniepie. I would have been saved so much heartache and pain if this info had been shared with me when I was first diagnosed. I think some people have no idea what damage they do when they paint a bleak picture. My own doctor just told me "Come back when you need a hip replacement" - that's all many doctors will offer. So of course I came to forums like this looking for more info. The depressing, but often false, picture sent me into a spiral of pain and depression.

Just to clarify, the information I have given you is supported by NICE guidelines. It's not just my opinions and observations. It's all documented with references to research in the very guidelines that your doctors and physios *should* be working to. If you download the document you'll find it invalidates a lot of the scare stories and false information that's prolific on osteoarthritis help sites and forums.

Copied from the NICE guidelines:

"A common misconception in the UK, within both the public and many health care professionals, is that osteoarthritis is a slowly progressive disease that inevitably gets worse and results in increasing pain and disability over time. However, the osteoarthritis process is one of attempted repair, and this repair process may limit the damage and symptoms in many cases."

"Hand osteoarthritis has a particularly good prognosis. Most cases of interphalangeal joint osteoarthritis become asymptomatic after a few years"

"Knee osteoarthritis is very variable in its outcome. Improvement in the structure of the joint, as shown by radiographs, is rare once the condition has become established. However, improvement in pain and disability over time is common. "

"Hip osteoarthritis probably has the worst overall outcome of the three major sites considered in this guideline. As with the knee, relatively little is known about the natural history of symptomatic disease, but we do
know that a significant number of people progress to a point where hip
replacement is needed in 1 to 5 years. In contrast, some hips heal spontaneously, with improvement in the radiographic changes as well as the symptoms."

Here's the data from the NICE guidelines with regards to the number of people with xray findings of joint degeneration and symptoms:

11% of older adults have radiographic signs of hip osteoarthritis but only 5% have symptoms. More than half of the people with x-ray evidence of osteoarthritis have no symptoms. That's quoted directly from the NICE guidelines.

Exercise and physical therapy can be a huge help (NICE backs me up on that too!) but the NICE guidelines aren't clear whether it's down to the patient to figure that out for themselves or whether it should be provided by the NHS. It wasn't on offer for me - I had to pay for it or learn for myself if I wanted it. But if it's on offer grab it with both hands. And if you don't like the results keep searching for better approaches to exercise and physical therapy.