Feet! Does anyone else suffer?

SunshineOrange

Hiya!

So for some context, I have been diagnosed with possible inflammatory arthritis early this year, with OA damage on my feet and ankles, confirmed from the inflammatory arthritis.

I am 23 years old and been suffering especially since turning 20. It started with my knees and now my feet and ankles are the main culprits.

My main question for everyone is about my foot - I have not spoken to or had any help regarding my foot, and decided to try to see if anyone can give me advice or can also relate (since I am struggling to find anything online or from the GP/doctors I see)

Even if it's just relating to feet and ankles being stubborn, I would be overjoyed to hear about anyone's experiences! I rarely get to speak to people about feet and ankle issues, since majority of those I meet in hospitals are for mainly knee and hip issues - who have given me lots of advice about my knee pain and slow developing hip pain, which has helped alot so far 👍 (I would love any advice anyone can give from their experience!)

I have one foot that is constantly swollen, red, cool to the touch, numb almost - but also hyper sensitive to anything grazing it (socks and sleeping with blankets especially difficult, since my foot is very cold...) I cannot move my foot at all at this point too. It is constantly sore and has an ache always. My ankle has slowly began to limit movement also.

Has anyone ever heard of this? Can anyone relate? I have spoken to older people with inflammatory arthritis, but they all cannot relate and no one seems to be clued in..

I hope people just want to chat too - I am just excited to finally be able to talk to someone who may understand or at least get what is going on to some extent. I am happy to chat to anyone, so please feel free to chat also! 😁

stickywicket

Hi,

I'm lucky in that, although my feet were the second point of attack for my RA, they don't give me too much bother now. Back then, when I was diagnosed, there were no DMARDS on offer so it was mostly anti-inflamms or, at first, just aspirin.

My feet did swell but I don't recall them feeling cold. For years I could only wear trainers until they made me some surgical shoes.

Over the years my ankles have fused as have some foot joints. Several toe joints are hypermobile. But oddly, thankfully, I don't have much pain there now.

All I can advise is physio, maybe seeing an orthotist to see what they can do. Often they make orthotic insoles for people. You can buy a sort of cage thing to hold bedding off your foot. My husband has just got one as he's just developed either OA or gout in some toes. He says it's great. Have a google.

I'm wondering, if you have inflammatory arthritis, what your rheumatologist is saying and doing. What meds are you on? Or, is it purely OA in your feet?

SunshineOrange

https://community.versusarthritis.org/discussion/comment/708325#Comment_708325

Hiya stickywicket! This is a long one, sorry!

Yeah, my one foot especially, is the centre of everything right now, so even knowing that you had swelling problems helps me feel less alone in that regard - not much people to ask, about feet that is..

The foot cage thing actually sounds like a life saver - I am going to Google that now! So thank you about that before I get into everything else!

So I have insoles for both feet (since i have OA confirmed in both feet and ankles onset and a medical boot for my right foot, that is causing all the major issues. My main issue was I couldn't wear anything but crocs, as I couldn't move my swollen foot and it was impossible to get anything on it... (let alone the crocs that were the only things I could squeeze on for work)But big ups to crocs - they have an orthopedic range that saved my life last year, waiting for anyone to believe me - I recommend them, if you are struggling!

Surgical shoes sound less... bulky? So I will ask about that next time I am at Podiatry - thanks for that small extra bit (I have never heard of those..)

I have been using sticks/one crutch to get around coming up a year, and have to use a sock stand thing - which has made getting socks on easier (but still have issues with everything, but I recommend one if you find it difficult to get anything on your foot or have sensitive feet!)

Rheumatology have put me on methotrexate meds (for context here, I was on tablets, but they had awful side effects on me and now on the injections, but they are also giving me a few side effects still) I have asked about my feet, which they referred me to podiatry (where I got the medical boot and above mentioned insoles). Podiatry and Rheumatology seem a little baffled, but said they will do more investigations.

Oh and it's OA from an inflammatory arthritis attacking the joints - so the damage of OA was from another arthritis type is all Rheumatology told me. They believe its possible psoriatic arthritis, but can't confirm for sure. Oh, and they did bloodtests, xrays, ultrasounds and MRIs to check, because they believed I was too young at 20 for arthritis..

But thank you so much for responding! It's honestly a weight of me to just get a response - and the cage for my foot sounds like I may be able to get se sleep for the first time in years! I am going on the hunt straight after sending this - thank you!!! 😁👍

stickywicket

I think they're actually called 'leg cages'. My husband's came in sections but easily (for someone with unarthritc hands) to assemble.

I don't think they give out surgical shoes as readily now that they have a good range of shoes covering several problems. I have all the problems though😉 My feet are total misshapes (The machine which they use to work out the measurements exactly, refused to believe mine were feet!) and one leg considerably shorter than the other so even Crocs would be useless but i do appreciate the thought.

I do use a sock aid but can't manage the sort you describe as my ankles are fused in the wrong position. They don't go straight. Not a problemin any other way, though.

Too young at 20! If only! I believe our youngest patient on here (well, parent of same) was 2yrs old. I was diagnosed at 15 but, luckily, very straightforward. Yes, my OA, and that of several others, came on the back of my inflammatory arthritis. In my case RA. If an inflammatory arthritis isn't controlled early enough with DMARDS OA will set in. So, if you can't tolerate the meth, do enssure you get a different one.

Best of luck!

jamieA

Hi @SunshineOrange

I'm a lot older than you and was diagnosed with psoriatic arthritis in 2020 at the age of 65 when my left knee swelled. From the outset I've had issues with my right foot - as if it were permanently sprained. I then started getting incidences where I couldn't scrunch my toes or point my toes when doing stretching exercises. I saw a rheumatology physio some months ago and he said most of the problems of my right foot are due to my left knee because I'm compensating for the pain in it. I also get pain in the balls of both feet and was told in 2022 by my rheumatologist I have metatarsalgia - caused by OA of the metatarsals of both feet probably caused by the PsA. I also get issues with my heels - a bit like plantar fasciitis - which I was told by my rheumatologist is enthesitis. Enthesitis is the swelling in the area where your muscles and ligaments attach to the bones. Turns out enthesitis is a common side effect of PsA.

Where I live the health authority has specialist rheumatology physios and podiatrists. It might be worth enquiring if they have these in your area.

Have rheumatology suggested biologics yet? That's what helped me greatly - two months after starting biologics I returned my crutches to physio. I'm now back to walking 50-60kms a week.

I hope you get the correct treatment soon.

SunshineOrange

https://community.versusarthritis.org/discussion/comment/708350#Comment_708350

Hey @stickywicket

Leg cages look like a life saver - so thank you for that, I am seriously looking into better nights, when it comes along!🤞

And yeah, the crocs range are good for when it's early and issues aren't enough to feel frustrated yet... As of today, I can't get anything on except a surgical boot and my ankle is rebelling so much, that the boot isn't even that comfy most days now too! (If you are reading and struggling with feet - I am with you and feel the struggles. Feet really are important, so treasure them as much as you can!)

The sock aids that are fixed are... very moulded. I completely get that they can't work for everyone.

I am happy to hear anything you can about the fused ankles issues though - did it give you any pain when they did fuse? Was there anything medical wise you had to go through for it? How long did you have issues with OA damage before anything was confirmed/happened? (Sorry alot of questions, I am just curious and happy to be able to ask someone about their account 😁) Anything you can tell me, would help alot, from your experience. I understand of not, I have just never had anyone explain what that may entail before - so no pressure, I already feel so much better about what's happening to me from you speak to me already!

Medication wise - yeah, it's a battle.. I trying to get a swap or ask about it, but I have to wait a few weeks to hear anything. I dont think its the one for me, but that does mean the next one could work for me! I am staying positive!

I was sure 20 wasn't uncommon for arthritis - but all I get is a combination of me being too young or that I must have other things for me to be affected in this way - but I know that it's just one of those things people link with age unfortunately.

It's a relief to hear OA is the effect of the inflammatory arthritis not being controlled soon enough - even if it has caused that damage now. I haven't had anyone tell me that it happens, most at hospitals have made it seem atypical. So honestly, thank you so much! I am so happy to hear it - you have helped so much, even in a small way! I have a weight lifted thinking it was my fault that I had OA and something else.

And I wish you the best too! Thank you so much, it means alot to have spoken to you!

SunshineOrange

https://community.versusarthritis.org/discussion/comment/708354#Comment_708354

Hiya @jamieA !

You don't know how much hearing about you being able to walk has me smiling! I haven't walked without supports for some time, and longer without any pain. I am hopeful for a time like this too - so thank you, it has helped me feel a little less worried about everything 👍

I am also glad to hear about your take on PsA too! Since my diagnosis is possible PsA with the OA damage, I completely understand the foot pain and issues!

The pain can be like I have broken my foot and it's bizarre.. The fact that it's common - makes me feel so much better about it to be really honest.. I have felt very alone with the issue for years at this point - so thank you so much for being able to tell me about that! I can't describe the feeling of knowing it isn't as much of a mystery as I may have been led to believe for so long.... (I realise it may not be 100% the same, but to hear anything is better than what I have been living with). Your comment has actually made my day, so much that I am smiling more than I thought I could today! It's the hope I needed!

I will have to look into specialist physio, but I know there is only a recommended podiatrist (which I am with, as of this year) - so I am hopefully on the way to some more relief soon.

I also haven't heard of biologics? I suppose that's the drugs they said they could "add on or use with others"? But please let me know!

And the fact it helped you - I am definitely inquiring about them when I can! To give up my supports and be able to even walk up the stairs without a break (or better pain!) I would cry with joy.

Thank you so much for sharing - anything about your journey that could help me, would be appreciated so much! The fact you have a similar story - with the knee to the foot and PsA, makes me feel so much better about what I am going into.

I wish you all the best in the future and hope that life is treating you well! And thank you so much, once again. This is more than I hoped to know when I decided to give this space a go, to see about the questions I have been asking for so long..

jamieA

Hi @SunshineOrange

At my initial diagnosis I was put on sulfasalazine. That didn't work so they added methotrexate 4 months later. That didn't work so a further 5 months on they added the biologic - well it's actually a biosimilar as the biologic was out of patent. The biosimilar is significantly cheaper - it's called Amgevita and it's an adalimumab biosimilar. I was told that you had to have 3 swollen joints and have tried 2 DMARDs before they put you on a biologic - it might be different in different health areas - I'm in Scotland. Have you been offered steroid injections? I found they helped - the benefit from them usually lasted about a month. Initially they injected into my worst joints but latterly the injected a bigger one into the muscle in my rear end. All but 2 of the 13 I had worked for me and gave me relief.

I'm not fixed by any means - I still get what I now recognise as flares - but I'm a great deal better than I was in the summer of 2021. I'll still need a replacement left knee in the not too distant future as that is beyond repair. I was on crutches for almost a year and it was a great feeling to hand them back when the Amgevita had kicked in fully. At my last rheumatology consultation the consultant said they think they limited the damage to my joints by getting me onto the biosimilar relatively quickly. I'm still on sulfasalazine and MTX as well. The rheumatologist said that the 3 drugs together gave a better result than each on it's own - or 1+1+1 is greater than 3 as she put it. I think it's called a synergistic effect.

Initially I felt a bit like a passenger in all that was happening and quite frankly my GP and first rheumatologist were less than helpful so I've toughened up considerably and become more forthright in my dealings with the medics. Thankfully the rheumatology clinic I'm with now seems to be far more patient orientated.

Hope you get a solution that works for you soon.

SunshineOrange

https://community.versusarthritis.org/discussion/comment/708373#Comment_708373

Hiya @jamieA

That detail on the medications is actually really helpful - I have only recently been allowed to switch to metoject from traditional methotrexate tablets (injections are supposed to be more effective and have less side effects, but unfortunately that seems to not be the case with me)

I had one steroid injection in my foot to try to get some movement back, but after one didn't do anything, the podiatrist was concerned it would accelerate the damage already there (and I don't have a definite diagnosis and my foot was swollen and had a rash - so they didn't want to give me an injection that would cause an infection) so they stopped at one and said "let's see what rheumatology say" before they do anything more. They have mostly said "this isn't the typical symptoms" or "not sure what to support you with" speeches in podiatry, hence being a little stumped and finally coming here to just see if anyone else had anything they could share..

Rheumatology are hopefully looking into my medications soon - but so far I am just as you described, a passenger in my health journey...

The fact that you are on three is something I have not even heard of - they mostly told me about my first options and that methotrexate was 80% effective on the patients (so I was pretty hopeful!) I am in England, so maybe that has an effect to everything? But yeah, so far I have just been trying to research why or what I can do (or what I should ask about/for when with a health professional)

I am glad you are at least able to recognise flares and manage (for the most part) what is happening. Again, I understand this doesn't go away, but the light at the tunnel would be no more constant chronic pain and maybe walking around without aids? So I am glad to hear that has become your outcome for the most part 👍 I was fearing the worst to be fair, like "what if its just this forever?" So even the small chance that I get some relief, is my goal! I think that being able to talk about what has happened is important and getting to hear about others routes makes me feel less out of control - oddly enough.

I hope that your journey to get replacement joints goes well and that you are okay, even with that coming along. Thank you so much for the details on the medications too - I am looking into the next steps, so knowing some details about what others have been on is stuff I can refer to later on (to have accounts of a few medications being used - and a battle of sorts with those, is a contrast to the quite a few stories, of only using two in their lifetime I have as reference)

Thanks again! You have been massive help for me getting my head around all this! I am glad to be a part of this community and be able to not fear asking things. It's a start to me being able to piece out what and where everything in my life leads. You are great help 👍

stickywicket

My ankles took years to fuse and yes, it was very painful. I attribute the success of them fusing in an ideal position to good old surgical shoes. But I've never met anyone else with 'self-fused' ankles and I doubt it'd happen now as they can fuse them now in the operating theatre. Much quicker!

I used to get told I was too young for arthritis but no longer😆 In fact, I knew someone who wrote a book named 'Arthritis at YOUR age?. Her name was Jill Holroyd. It's still freely available to read online.

Do ask away if you have questions but also bear in mind that I've had RA for over 60 years now. Treatments are much better now.

SunshineOrange

I am sorry to hear that it was painful for your ankles to fuse.. and I was told about surgeries, but alot of it was speculative and "you won't need that" talk. My mind with how my body is acting up is alot more reasonable, since just getting a little comfort that maybe this isn't as unusual as I thought. I was looking at what people have had and now less worried about whether I will be able to walk, with everything taking effect on me.

But I suppose that makes me think about all that happening and question how much longer I should wait with everything too. It's just alot having to go through the constant pain and be told to wait.. But I understand things can't happen overnight also.

But the book referral sounds good - I don't tend to see anything about arthritis in media, so I will look onto that. Thank you!

And thank you - even just being told about it is so much more than you can know. It has been a very lonely journey trying not to overthink and researching every day, so I feel alot more confident about it! 👍