Ankle/foot problem

[net2012]

Have had pain in my ankle for about 2 years, also had flares in little toes both feet which I can see the damage from. April to June last year I really started had problems with this left ankle where I had to take prescription strength nurofen, wear an ankle support and take pain killers, but funnily enough at one point I thought I was going to get a bad flare in ankle from this and it actualy happened to my other ankle which floored me literally. Anyway as you can guess I have been complaining about this ankle to rheumy, and for some reason they just don;t examine feet as they do hands!! So February appt with consultantI ask please can you look at this ankle and he says osteoarthritis, just like that. I think because I am getting osteoarthritis in the end joints of my fingers separate issue.

I see my biologics nurse in June and ask her to look at my ankle which by now is puffy and the nurse said it is the RA that has attacked your ankle and caused all the ligaments and tendons to collapse so have fallen arch. Advice was get an insole to lift arch and there is nothing that you can do for it.

At this stage I have bought an insole quite expensive £35 andpain is causing me to hobble with or without the instep I try wearing ankle support and that causes as much pain. So I am grabbing the bull by the horn and have an appt with GP on Friday. I don't normally ever go to GP for RA I rely on my rheumy teamwhich are fantastic but I feel like it is the blind leading the blind here with consideration to this ankle. I even had an occupational health work Dr examine my ankle and he said no osteo!!! I am just hoping my GP will let me have a scan on this ankle and find out what the real problem is so it can be treated if it can be treated as it is really impacting on my life. Going to try and get a steroid shot fromrheumy nurse, although she was wary when I asked about onelast time as I had had so many infections last last year and beginning of this year from being on Humira, but I have been clearfrom infections for 8 months now.

Justso confused about this as when I got a copy of letter from cnsultant appt in February he was talking about changing my biologic, why would he do that if he thinks a lot of my pain is osteo? They have a an ultrasound unit at my clinic too. Think I am just saying scan this damn ankle. I am 57 and this is just too early to be debilitated like this.

Jeanette

[Livingston]

You are so right about feet. My old rheumatologist never looked, even though the majority of the swelling I have is in my feet. Fortunately, my new one seems to be different - & she wasn't pleased with what she saw.

I know hands are important, but not being able to walk is a big thing too.

Maybe a referral to orthotics might be useful? You get tailor made insoles. Mine are the best thing to have happened in a long time.

Good luck with your GP & your steroid injection.

[net2012 in reply to Livingston]

Thanks Livingston. Yes I know what you mean about hands and I have splints and compression gloves so with those it helps with discomfort but with feet what can you do, you have to walk. I bought some insoles quite expensive £35 no sign of them helping yet.

[Hidden]

Severe foot and ankle pain is where my RA started. It is very frusterating having foot pain and the doctors don't pay attention to it.

I ended up paying over $450.00 on orthotics and they have helped me alot. The price was outrageous, but I had no choice.

Take care

Sue

[hatshepsut]

You need to apply the squeaking wvheel principle. At every opportunity, and with anyone you see, talk a bout your feet and ankles. Ask outright for xrays/scans, make it clear that something needs to be done, ask for referrals to podiatrist, orthotist. Eventually, someone will give in, and oil will be prduced....I.e. action will be taken about your feet.

Unfortunately, it's very common for feet to be ignored, and a lot of unnoticed damage can be missed. At the end of the day, if you're affected by this, you just have to refuse to allow your feet to deteriorate, and persevere until you get appropriate treatment.

I am in the middle of such a battle, 2nd time round, but I will succeed!!!

Good luck, M xx

[net2012 in reply to hatshepsut]

Awww thanks M exactly reply I needed. The reason I am going to GP as I asked at appt in June with Biologics nurse to look at my ankle and there was swelling there too and she said get an insole I did (more pain) but the nothing you can do about it really shocked me No scans when our unit has an ultra sound machine. One Dr saying osteo, another Dr saying no osteo and then nurse saying tendons. I feel like it is a case of the blind leading the blind here. Exactly the right words I will use I do not want my feet to deteriorate. Good luck in your battle

Jeanette x

[_tracy_]

Also get your B12 checked, if deficient can cause weird aches and pains. Pernicious anemia is an autoimmune disease that can result in B12 deficiency. Often you can have more than one autoimmune disease so important to look out for other possibilities.

[oldtimer]

The podiatrist is the person to ask about this. However, they do vary. One I saw only gave me a lecture about not wearing high heels and flip flops! I had to interrupt her to explain that I have not been able to wear those since my twenties. But the other one, seen privately, was extremely helpful. She looked at my footwear and made suggestions, fitted me with custom made inserts, made suggestions about my walking, and after a while suggested that I should see an orthopaedic surgeon for a fusion as my feet had deteriorated.

Since the fusion I have had a new lease of life being able to walk again.

[bighair]

I have had similar problems with my left ankle to the point that weight bearing was excruciating. Orthopaedic surgeon told me my ankle was effectively fusing itself so no need for surgery. I have been fitted for insoles and orthotics, i have a bag full of them, all to varying degrees of success. Now a few years on, of hobbling and crying, my ankle has pretty much fused itself and gives me very little grief so guess surgeon was right. The problem now is the position the ankle has fused in has created problems with the front of my foot which now neec surgery. Ask to be referred to a foot and ankle specialist, they do exist, it may be that an ankle fusion on replacement is viable for you. I know of a few people who went down this route and very happy with ghe results.

[beeckey]

I have had sore feet and ankles since i first took RA over 12 years ago they were the first place i felt the pain and they are still the same nothing seems to help they never take much notice of them.I did get shoes and boots made but but still painful and swollen but they never ask about them i bring it up but i leave the same many years ago i had steroid injections into the joints pain free for 1 week so did not last hope you are pain free we can only hope x

[trianon]

I would definitely ask Rheumy for a referral to orthotics - I'm amazed he/she hasn't already done this.

[flow4]

Definitely ask for referrals. Be aware that in some NHS Trusts, orthotics and podiatry are different departments: podiatry do the assessments and make some basic orthoses, and you can get a referral from your GP; orthotics make more specialist orthoses and fit specialist footwear, and usually take referrals from hospital consultants. Also be aware that there is a gap in support in many areas: you can get orthoses, but after a certain point those don't offer enough support... And then there's nothing on offer apart from surgery. It is a bit of a nightmare - podiatry/foot health is definitely a 'Cinderella service' in the NHS - neglected, under-funded and low-status. And yet feet are SO important to us as individuals!

In my case, I have seen every foot service/consultant available, some of them several times... Oldtimer is right they are very variable... My feet are such a mess that the OS and surgical podatrist agree that I would need 4 procedures to fix them, but there's only a 50/50 success rate, and significant risks that it won't work or might even go so badly wrong that I need amputation, so I have decided (with the OS consultant's support) that I won't have surgery, and I'll just hobble on for now...

So I'm back to orthotics tomorrow to see about specialist footwear... I got that particular referral by phoning Healthwatch, to ask whether it was really true that there was nothing available between orthoses and surgery... They put me in touch with the Locality Manager, who sorted out a specialist referral for me... Hatshepshut is right about the squeaky wheel thing!

Meanwhile, I have found these flimsy little foot support things on Amazon that are basically a bit of elastic that goes round your foot with a cushion pad under your arch. They look like they would be useless, and on their own they probably would... But worn with other arch support I have found them really helpful - they give that little bit more than the orthoses on their own do. They're very cheap (£2-3) so worth trying, I'd say.

[jayne17]

I have had both ankle joints replaced and am very pleased with the results. See a foot and ankle specialist, preferably at an orthapaedic hospital where they know what their doing and have done many before. Ankle joint replacements operations are of course less common than hip and knee, but the experts are out there! Good luck.

[net2012]

Thank you so much everyone for your welcome advice. Trianon My consultant looked at my ankle moved it a few ways and said osteo...no advice and it seems now that because I have the start of osteoarthritis in my dip joints quite a few that he is now saying everything osteo. I became so confused that I said I don;t have RA then and he said yes you have RA and osteo apparently I have hebriden and bouchard nodules and also dupytrens contracture. I said what about my neck (2 complaints) and he said osteo I justwanted to start giggling out loud but I argued how can it be osteo when I woke up one morning unable to lift head and when I eventually did get up I could not lift my head and one arm, I thought I had had a stoke and then another incident of having severe headache and next day waking up and unable to move head sideways...surely that is an RA flare....Guess what Osteo!!!

For me it feels as though it is just all guesswork... I really feel that I do need a scan to find out exactly what is wrong and ways of being to treat it if possible. I do know my unit has aspecialist RA physiotherapist and occupational therapists who have been wonderful with my hands I don;t see a link to their services for having a specialist podiatrist. My GP has as one of his interests orthopedics so hope that will help me. Will let you all know how I get on on Friday. Many thanks again Jeanette.

[Hidden]

I know what you mean about the comical aspect to the way they distinguish between OA and RA! But I believe they work things out according to which joints and tendons are synovial. The non synovial joints and tendons are much more likely to be affected by OA than RA - but you can, and probably do have OA which comes as a secondary to your RA. So by getting good control of your RA you are more likely to get your OA better controlled too.

If you have OA in your neck as you describe, it could well cause stroke-like symptoms in your arms because OA can be just as damaging and painful for many sufferers. The degeneration of your neck joints can impact or compress nerves, including your spinal cord so still needs diagnosing and treating.

I had a very painful ankle for a year or so when my RA was bad and my rheumy wasn't seeing much of me at that stage so I saw the physio through my GP.

She told me it was synovitis (RA) in my tendon. It finally flared so badly I couldn't put any weight on it or get my shoe on the affected foot. But I took naproxen to max dose for a week and my rheumy upped my mtx dose and it went down and has never bothered me since.

I also have OA in my DIP joints but have a podiatrist (I saw him privately at first then he put me on his NHS list) who seems to know a lot about RA and tells me which is which by the heat he can feel coming off my painful joints - including hands. A good podiatrist is worth their weight in gold and I would say this is what you need. Hope your GP can help.

[net2012]

Hi everyone. Have a good result been referred to Lincolnshire Musculoskeletal clinical services for an MRI, all services available at this clinic. Very pleased

[merseygirl11]

If you are in the UK get an appointment with Mr Clough at Wrightington Hospital near Wigan. I have just had my second ankle replacement there. They are excellent.