Advice Please

SouthEastDetecting

Hi this is my second post (first was M 32 Osteoarthritis). I’ve got an MSK referral appointment on 16th April but my condition seems to be spreading and worsening. What started as joint pain in my back and neck I am now feeling I’m almost all my joints throughout my body (knees probably worst effected). My question is - is this to be expected in osteoarthritis or could it be something else that the doctors missed? As a note it is at its worst at the end of the day.

Mike1

In my experience OA does spread and at varying speeds, it started in my back on top of a degenerative spinal disease and has now spread to most joints over the past 15 or so years. So far this year it has spread to my elbows, shoulders and feet; meanwhile my back, neck, hands and knees have gotten worse. The trouble with OA is that, apart from being incurable, it affects different people to different extents at different speeds; some may only get it in one or two joints in a mild form whilst others have chronic and widespread OA.

BettyMac

I wonder if perhaps elevated inflammation in a couple of joints makes the rest a bit twitchy. Maybe they’ve been grumbling along quietly and unnoticed for ages - and then the inflammatory cells wake them up so they decide to join in too?

I hope you get some answers at your appointment.

Once we know what we’re dealing with, it gets a bit easier to live with.

Brynmor

Hi @SouthEastDetecting

I thought I would just add to this discussion by saying that our website has some good general information on osteoarthritis that you might find useful:

https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis/

There are also sections for osteoarthritis in specific joints that might be worth looking at.

Best wishes

Brynmor

dreamdaisy

I began arthritis over twenty years ago with one affected joint, now its many more and I have a creaky foot in both arthritic camps; I have an auto-immune which led in turn to OA.

I am not surprised that mine has spread (after all any knd of arthritis is degenerative and progressive) but I think the main culprit might be myself. It all started in my left knee then six years later my right knee began, possibly because it could, possibly because my right knee had been taking the strain of my left being painful. By 2003 I was on two crutches but only since early 2002 so I guess I might have encouraged degenerative matters in the previous years. Who knows? I don't.

A neighbour has a very different experience of OA, she did not begin until her late 60s, got a new hip almost instantly and six years on all is hunky-dory. She was amazed to learn that my OA is widespread, her experience was it only affected one hip and thought it the same for everyone. A friend,who has the same kind of auto-immune as me, started minimum meds far quicker than me and, after ten years, his has stayed where it began, gone nowhere else, and no sign of OA as yet despite being a hulking great rugby prop forward in his youth.

We get what we get, we have little say in how it develops but how we deal with it is crucial. DD

SouthEastDetecting

Thanks so much for all your reply’s they really have helped and given me a bit more insight. I think your right once I know more it will be easier as the not knowing is the worst. Can I ask DreamDaisy which autoimmune you have? Because I feel there’s a good chance I might have some sort of autoimmune triggered by campylobacter I had in 2017. Been in and out of the doctors since then with symptoms such as fatigue, weakness, dizzy spells, stomach issues etc and had many tests, the osteoarthritis is the first actual diagnosis I’ve had.

Thanks all anyway and I’ll update when I know more 👍🏻

dreamdaisy

Hello, I have psoriatic arthritis. I was born with eczema (gifted by the maternal side of the family), my father had mild psoriasis whereas I have hardly any; it was burst of pustular psoriasis on my palms and soles which helped the medical penny to drop. I started the wrong symptoms in the wrong joint in 1997, the psoriasis happened in 2006.

You mention campobylactor: I wonder if Reactive Arthritis could be a possibility? Not many people have heard of it, nedless to say we have, there are a number of threads about it, mostly on Say Hello. DD

Airwave!

I have widespread OA, some joints are worst than others but involves everything other than upper spine, even my jaw joints are a problem and it has been this way for many years. I was first diagnosed 40 years ago and had problems since I was young, so yes to your questions but it is different for everyone.

But then OA has given me a lot, no need to work, being with my children and grandchildren, going on holiday when I want, travelling at a time to suit me and time to follow my own path in life for which I am grateful. Things aren’t all bad.

SouthEastDetecting

Airwave, thanks for the reply, can I ask how young when you first started getting problematic symptoms. I know it’s different for everyone but I’m trying to get an idea of possibly how long or how short a time I’ve got before I might have to make some life changes like work ect
So worried how this is going to effect my wife and two boys

Airwave!

I used to get aches and pains in my childhood, I was told by my mum that they were growing pains and given a good ignoring, going into my early twenties it was rather obvious that things weren’t right and at twenty five a GP said I had OA. I still tried to exercise and do all the normal things in life but with less success, I still do but I have to ration my wants against my needs if you see what I mean, I’m good at overdoing things or trying to! I’ve only just, at 64, had the (official!) diagnosis of widespread OA. I was medically retired at 44.

Exercise is a necessary pleasure for me, I’ve just cycled 7 miles on my electric super dooper bike but I couldn’t do it every day and need to come down from my high and rest. I try and do some activity every day but not necessarily hard exercise and so keep my joints from getting loose and wearing quicker. Hope this helps.

its a grin, honest!

SeaVixon

Hi unfortunately from my own experience of O/A is it will eventually affect all joints one way or another .In my case, I was in two nasty accidents and broke many bones in my body ,including, fractures to the spine and neck ,face/jaw, leg, knee's, and other bones , and over many years they have all turned arthritic over time . I was told by my surgeons after the second accident, that it's highly likely that I would end up with O/A ,so I have been able to come to terms with it over the years, it doesn't make it less painfull, but at least I was forewarned ,but to just to get it out of the blue must be very frustrating , from what I know and been told , O/A is normally coursed due to wear or damage to the joint, may be you have suffered an injure in the past ,or suffer from a repetitive injurie? Another course of O/A I was told ,is when you try to compensate for the pain in one joint , you transfer your weight through another joint to counter the pain , but by doing that it will only make things worse ,as that joint then becomes worn and arthritic over time as well , it's easy for people to say keep your posture when your in pain, its very hard to do .I hope things go well for you in the future and hope you find away through it .

Froglet

Hi, Good advice on here, i have osteoarthritis and been suffering for over 7 years with it in both knees. I used to be a Medical PA for the NHS and was at my desk most of the time and didn't notice until I started walking to the railway station and back. Having had it diagnosed my GP said it was osteoarthritis but they wouldn't do anything until it was very bad. I was medically retired from the NHS after being bullied twice and was caused a breakdown so I invested some of my well earned pension and had a cattery built to help pay the bills plus help me psychologically, which it did and the cattery has been doing well, (until COVID19), however a few months ago my knee literally gave way and I couldn't stand or walk. I was taken by ambulance to hospital and was told there was nothing they could do as I need a new knee. I struggled as people say with pain, which of course is not good for the joints, as you put pressure on the other knee in my case. I was thankfully offered a private local hospital because of my situation but still a waiting list, but being a medical PA i know the ropes and kept on top of things and managed to get a cancellation and had a new knee fitted in March 2020. I can walk, not bend it properly but can get around ok and exercise daily as one thing I have learnt that sitting really does not do it any good, it needs movement to loosen the new joint. I find actually more stiffness when asleep, once up and about it helps it.

A long story, but my advice to anyone is keep on top of things, if offered a consultant in a hospital for surgery, call the medical secretary/PA and ask how things are progressing, always be polite and she will help you and offer a cancellation, especially if you explain the predicament your in. e.g. in my case I could not walk and needed to get moving for my new business. My surgery was done very quickly, great surgeon and now at home recovering.

Good luck to everyone

PatsyPJ

I have had muscular skeletal problems for some time now but got diagnosed With osteoarthritis possibility developing psoriatic arthritis in February was due steroid Injections and physio but due to covid never happening. I have found that my pains have got worse since I have had to stay home I keep going trying to find things to do but then when I stop my body can almost go into some sort of break down then I struggle getting up again I know when it’s time for pain killers then. Since I’m quite new this year to this I only take paracetamol and ibuprofen as I’ve only had one appointment with rheumatology 🤦‍♀️ I have no idea if my pains are muscular or more to do with my joints .