New diagnosis of OA seems odd

[Deleted User]

Hello, I've just found out that I have osteoarthritis but what baffles me is that everything I read refers to joints hurting, swelling, being red and hot one at a time but I have pain / discomfort in multiple joints at the same time - mostly aching but mixed with sharp pinchy sensations in and around joints or between them like between ankle and knee for example.

My knees are sometimes puffy but that doesn't happen in any other joint and they aren't red and hot so I'm really confused because the descriptions of symptoms don't seem to match what I'm experiencing apart from the general sense of feeling unwell.

Someone suggested gels or creams to relieve joint pain but for me the pain moves about so I wouldn't know where to put it!

Is this just what happens at the early stages of osteoarthritis?

I'd be really grateful for any information that will help me to understand so thanks in advance.

Poppyjane

Hello @Izzy72 @Izzy72 welcome to the online community.

You have recently been diagnosed with osteoarthritis and are baffled because your symptoms do not match with the information you have read about the disease. Since we are all unique individuals I think you are someone else who is proving that the medical profession can only deal in general descriptions and each of us responds in slightly different ways. I expect when you hear about some of our members experiences you will discover that we have different stories of our journeys with arthritis - all striving to find the way that "fits" our own condition and how we cope with it. Many of us learning as we go and adapting as our bodies change over time.

I attach some information which I hope you will find helpful

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

https://www.versusarthritis.org/news/2020/november/ask-the-expert-newly-diagnosed-with-arthritis/

You mentioned gels and creams and there are a number over the counter products as well as capsaicin cream which can be prescribed by your GP. We are all being encouraged to exercise to keep our muscles and joints as mobile and flexible as possible so do take a moment to look at the YouTube videos with the "Lets Move" exercise programmes which many of us find fun and beneficial.

https://www.versusarthritis.org/news/2021/october/new-stretching-videos-to-help-keep-moving-and-manage-your-arthritis/

I hope some of our members will share their experiences with you and we look forward to hearing from you again soon.

Take care

Poppyjane

[Deleted User]

Hello Poppyjane

Thank you for your really helpful answer, I'll check out the links you have given. It's good to know that being confused is not that unusual!

I get on well with my GP, she has been helpful and supportive but I didn't think of the questions until I was driving home so it's great to find so many helpful people here and on your chat line.

I exercise a lot (walk and run) and having read how important weight training and yoga are to coping with arthritis I've just added both to my activity list (pink weights arriving today!) but I'll also have a look at the video link you have included.

Thanks again, Izzy

TLee

Way back in the good old days, before my hip became so severe that it is now in constant pain, I do recall symptoms coming & going. In fact, in joints other than my hip, I still have only occasional pain or swelling. One knuckle in my ring finger developed a bump so big it was disfiguring, but now it has almost completely disappeared. I don't know for certain that it was arthritis and not some other injury, but I do know that bone spurs can form and then wear down or break off. Not to discourage exercise, but make sure that you don't do too much & put unnecessary strain on joints. My physical therapist had a real laugh when I asked if the thing to do was to just work extra hard & sort of wear the bone smooth again! Doesn't really work that way.

Lilymary

i never had the redness, swelling etc in my hip (before it was replaced) despite pain levels being off the scale sometimes. For years, while the joint was quietly disintegrating, I had very little pain in the joint at all, just random pains elsewhere in the leg, an odd limp, and gradual loss of rotation in the hip as it was eventually bone on bone. A fall really set off the pain, which then went through the roof until I had it replaced about 12 months later. This included not just pains in the hip joint, but referred pain elsewhere in the affected leg, including the shin, behind the knee cap, and down the thigh. It was only an xray that gave the diagnosis of such advanced OA I already needed a new hip. Before that my physio suspected that there was a "bit of arthritis going on" but my GP wouldn't refer me for xray on the basis that it "didn't seem bad enough" and there was "no treatment for it anyway" 🙄🙄🙄. The only reason they eventually xrayed it was because they thought I might have broken my hip in the fall.

I gather this isn't an uncommon experience of OA - gradually wearing away for years then suddenly kicking off. The woman in the next ward to me had experienced similar. What I hadn't realised till I came on this site it that general fatigue is also part of OA, and what I'd thought was CFS/ME may in fact have been part of the arthritis problem. (Sorry for all the acronyms).

So in short, yes, everyone's experience of OA will vary, and many won't have text book symptoms. Have you been xrayed to ascertain where/how bad yours is? The fact that the GP thinks it's not much may not be the case in reality, as my own experience showed. If using gels and creams (although tbh I'm dubious about their effectiveness for OA) I'd suggest putting it on the origin of the pain, rather than where it shows up as referred pain. But you may be better off with a more general purpose pain killer, which you should discuss with your GP.

[Deleted User]

@Lilymary No I haven't had or been offered xrays, I had blood tests because I was in quite a bit of pain in random joints or all joints, between joints, it was and is a kind of odd mix of dull aches, sharp breathtaking pains when I moved too quickly or squeezed something too tightly but probably the oddest was feeling like I was being pinched from the inside! I more or less ignored it all because it didn't seem bad enough to go to the doctor until a couple of days when I could barely move without crying.

It's all happened very quickly which frightens me because I didn't know that OA is like a silent degeneration until things can suddenly go very wrong indeed, I'd always thought it happened gradually. Your comments about referred pain are very interesting because that has been confusing me too - I get pains behind my knees, in my thighs, upper and lower arms, pretty much anywhere really apart from my neck. I occasionally get pains in my hips but not so often and not as bad so I'd thought they are okay, maybe not then. It's all a bit overwhelming but I'm so glad for the support here and for the time you and others have taken to answer my questions.

It was a huge relief to discover that fatigue is part of life with OA too, so much to learn. Thanks again

[Deleted User]

@TLee thanks for your reply, I have a lot to learn, not least to pace myself so your warning to not do too much is very timely. I tend to push myself when exercising but recently have found it can take me days to recover from even a shorter or less taxing walk than I'm used to. I ran my first 5k and it took me nearly 2 weeks to recover - I put it down to age because at the time I wasn't in much pain and I didn't realise there is hidden damage going on nor that fatigue was such a big issue. It's hard to change habits isn't it but now I do I'll be more careful. Thanks again.

Lilymary

I can see why the blood tested you rather than xrays, they probably wouldn't have known where to start! OA isn't usually diagnosed via blood tests, xrays are better for that, but they were probably testing you for the raft of arthritis conditions which are indicated on blood tests, eg RA. That was at least a logical starting point. Sadly with OA time will eventually tell which joints are worst affected and causing your various pains. I hope they can get to the bottom of it soon for you. Our bodies can be very odd (as well as very individual) - I suspect they can battle on for ages with their internal coping mechanisms and then suddenly it all spills over and those systems become overwhelmed and cave in. We need to be more aware of ourselves and listen to our bodies more, but we live in a culture of "grit your teeth, dig deep and carry on". Sadly some of us are only learning the hard way, myself included.

[Deleted User]

@Lilymary Yes you are right, the blood tests were to find out whether any signs of RA were present, as they aren't my GP diagnosed OA by default. No more tests or x-rays were offered, she just said go back if I want stronger painkillers or a physio appointment so my conclusion was it's down to me! So I'll look after myself for now and do the things that I've read will possibly help. I'm very active - walking, running and the odd swim so I'll carry on with those and modify as and when I need to.

Yoga and weight lifting are mentioned frequently; I used to do yoga many moons ago so have joined an online class and found an online demo of weights for arthritis which I tried out today and really enjoyed it - I'm not talking heavy weights just handheld dumbbells!

I'm pretty scared by it all to be honest, I struggle with anxiety and depression that I control with exercise and meditation rather than medication - so loss of mobility is my biggest fear, whatever the cause is.

Lilymary

Hi Izzy, sounds like you're doing all the right things. Keeping your muscles well toned as best you can will make a big difference to how the joints are affected by OA, as the muscles will help support the joint. Just as importantly, good muscle tone can make a big difference to how well you recover after surgery. Two friends of mine recently had hip replacements (THR), and both were VERY fit (rock climbing, skiing, daily dog walking etc - one is a ski instructor) and their recoveries were very much better than mine. I had a few unusual complications and other health challenges before and after my THR, so I'm' still dealing with the loss of muscle strength and balance after 18 months, but slowly getting there. The main thing is the awful pain has gone, which had got so bad I could barely walk even on max strength pain killers. I can now do around 6 miles and am back on horseback.

Depression and anxiety can go hand in hand with arthritis, but again, it sounds like you're doing the right things on that score too. I found this site really helped me - having people who understand the debilitating effects of pain can be really supportive. It's hard for non-sufferers to understand just how much this affects you. So come on here whenever you need a moan - we all know how rubbish this can get.

When the pain or loss of joint mobility does get really bad though, do go back to your GP. You haven't been signed off indefinitely, as arthritis is usually proressive, but keeping active may slow it down. It will also do your mental health a lot of good, and it's helps to feel you have taken charge of your condition to some extent, even if it's a bit tough getting your head round the initial diagnosis. It's likely that there will come a time when you do need prescription pain relief eventually, and there may come a stage when the only answer is surgery. Only by keeping your GP informed can you keep on top of this at the appropriate times. As I said before, my hip was in an awful state but functional for a long time. Surgery is seen as "extreme pain relief" when all non-surgical intervention options have run out. But hopefully that will be a long way off for you.

Smoggie

Hi Izzy72 , I can understand how scary it is for you I'm going through something similar. I have sharp tingling pins and needles type of pain in lower legs feet and ankles and slight swelling that never goes away, I've had it for 6 months.my GP says it's tendonitis but I don't do sport only walking and swimming.i also have elbow and wrist pain, fatigue and night sweats it's so worrying I wish I had private health care to pay for a scan. You are doing great keeping yourself fit as it will help . Stay strong.

[Deleted User]

@Lilymary goodness me that's amazing that you are back riding and walking 6 miles in one go! It must be amazing after being in so much pain and all but immobilised.

At the moment I have nowhere near as much to deal with but it's good to know there's a place I can come and ask questions or just read about how other people are coping. I think at this stage I don't really understand what's most likely going to happen to me even though I used to work with elderly people and saw first hand just how difficult and painful life was for those with arthritis.

I think my head is firmly tucked into the sand - plus a bit of pushing reality to the back of my mind and a sprinkling of - it won't happen to me - if that makes sense! I understand in theory but the reality hasn't yet prevented me from doing any of the activities I'm used to and paracetamol eases the pain away - nothing compared to what I read here. I have such respect for you for coping so well and for the other people here who are dealing with things well outside anything I've experienced so far.

Thanks for your support and I hope you have a lovely Christmas

Lilymary

Hi @Izzy72 , I'm no hero, I was in awe of everyone else here who had far more debilitating conditions than mine, some almost life long. But their support and advice really helped me get through this. I'm not sure how I would have coped without them to be honest. The acceptance stage can be really hard, but do keep doing your physio - have a look at the exercises for hips on this site. My sister in law was recently diagnosed with OA in her hips and has been doing her exercises for about 30 mins every morning, religiously, and says it has really helped. You won't see the benefit for quite a few weeks, and a lot of people give up before then, but stick at it. It's very boring, but I find putting on a nice CD or podcast in the background keeps me going.

It took me a very long time to get up to 6 miles (about 8 months) and I've only just started riding after over 18 months post surgery, but recently I'd got fed up waiting to get back to "normal" and decided to just give it a go (with my surgeon's approval) and see what happens. I'll never get back to where I was, but it's all a huge improvement on my quality of life pre-op. I'm happy just to be simply sitting on a horse again. Anything else I manage is a bonus!