Newly Diagnosed / Confused

cassieinez

I am 34 and woke up 5 weeks ago, the day after after a long walk, unable to walk and my knee buckling. I had no idea what was going on.

I finally saw an orthopaedic doctor last week and was told I had arthritis in the knee and it was such a shock, I didn't really get to ask all the questions I had and wasn't offered much support.

I am on week 6 and still struggling to walk without a stick, feel stiff and swollen after previously no symptoms at all. My doctor advised I work form home for the next 4 weeks and that was that, no follow-up appointment booked or anything.

I'm just so confused about what is next, will I ever be able to walk unaided again, I've been in so much pain and I don't know what I'm supposed to do - should I be resting or attempting to exercise (even though movement is difficult) - is this just bad flare up, how long will it continue, is this just how things will be forever now.

I haven't been offered any treatment other than just rest but also keep it moving. I just feel so lost and worried and don't know what to do!

Anna

Hello @cassieinez and welcome to the online community,

Receiving a diagnosis of arthritis in the knee is understandably a big shock and can be a lot to take in. If you felt that the orthopaedic doctor and your own GP didn't offer much support, it's not surprising that you are feeling confused and worried. I would suggest that you make another appointment with your GP after four weeks working from home, and tell them how you are feeling and ask what the next step is. It might be that you can be referred to a physiotherapist who can advice gentle exercises to help keep your knee mobile, or your pain medication can be looked at to find a more effective regime. Rest and movement are certainly the way forward, but you should be given more guidance about how to manage this.

I've linked to an information page about arthritis of the knee. Perhaps after reading this you will feel more confident in talking to your GP and asking for help:

https://versusarthritis.org/about-arthritis/conditions/osteoarthritis-of-the-knee/

I notice you are only 34 years old. We have a young people's forum - link below - that you might like to read and post any questions you may have. Everyone is very friendly and welcoming.

https://community.versusarthritis.org/categories/young-peoples-forum

All the best,

Anna (Moderator)

Jennifer65

Hi, I have also had a recent diagnosis of osteoarthritis in my knee. My GP told me lots about it, gave me links to this website (which is brilliant by the way) but what I have taken from it is regular paracetamol and keep moving. I will follow your post to see if there is any experience of if the pain comes and goes or is permanent etc. I am older than you though - so I hope you do get some good advice. All the best.

Baloo

Actually @cassieinez thats a lot to be going on with for now for a ton load of advice.

Your right, without treatment it might be a month or so before you see any improvement, but with careful nursing, which is another thing it really needs, you might crack some useful solutions.

4 weeks of rest and moving strikes me as being long enough for the doctor to know if his advice made any difference for example to the swelling and pain. I presume by rest he meant no long walks and by movement he meant no sitting around for long periods, but get up and go into other rooms pretty often.

Only the knees inflamed, thats amazing its only one joint, but also a pretty important joint for mobility.

Arthuritis

@cassieinez Sounds exactly like how my symptoms developed. I remember my feet hurt so badly I couldn’t bear to put any weight on them in the mornings and it was particularly bad after any form of rest. Then it got to my fingers.

My 2p worth… If the pain is unbearable you could go back to your rheumy for an urgent appointment to get a steroid prescription. This can be tablets or an injection depending on what the consultant thinks will be safest and most effective. The good news is it acts within minutes, the bad news is it’s not a long term solution or cure. It’s like a General telling a bunch of marauding T-cell soldiers to halt their indiscriminate shooting but as soon as the general leaves the destruction resumes. There are long acting steroid injections given intramuscularly (in the bum) that last 3 months, and get you near normal quickly, but you don’t want to be on steroids any longer than absolutely necessary.

The longer term solution of course is not to have uneducated marauding T cell soldiers, or at least if they are going to be uneducated then stop them being replenished. That’s where Methotrexate & Biologics come in. They stop production of new soldiers, or their process of receiving “destroy” orders but those already circulating will keep destroying until they are dead… usually within 3 months. Then you get pain relief.

Have your gp & rheumy confirm that you don’t have reactive arthritis, as this has the same symptoms, but is curable if you know what trigger it’s reacting to, often an infection or gut problem. This can happen in a minority of cases, but if diagnosed and treated, would lead to a more desirable outcome. I had a gut bacterial overgrowth triggering my flares and a course of antibiotics for my other opportunistic infections while under immune suppression wiped out my trigger bacteria in the gut, so I had gone from being under maximum immune suppression to nothing in just 2 weeks, and have been off those drugs for 6 months now, except for HCQ from time to time when I expect a flare after a big food indulgence. However I am in the minority in that amongst the numerous antibiotics tried, one just happened to hit my trigger bacteria type and in doing so, removed the cause of my rheumatoid arthritis inflammation.

Being under immune suppression sucks, as it’s not a precise tool, the drugs clobber your immune system so you are much more susceptible to infections, both bacterial and viral. As you are 34, I assume you had the chickenpox vaccine, (check that you did), as if you had chickenpox like us older folks before the vaccine, you can look forward to the prospect of shingles which can be very painful. The drugs are called “disease modifying” antirheumatic drugs, but they do not modify the disease, implying they change the disease, but that’s not what they do. A more accurate term is immune suppression, but it scares people, however you will notice in all NHS literature about people with weakened immune systems, as a result of taking medication for rheumatoid arthritis have to follow specific advice as they are susceptible eg extra and early Covid jabs etc. It does not use euphemisms like “disease modifying drugs”!

I’d follow Baloo’s advice, don’t be a couch potato, gentle controlled movements, no impact exercise (eg no running), move from room to room or aisle to aisle slowly. Gentle stretches.