Hi everyone .
Just thought I would ask ...... How bad /sore/disfigured etc does a joint have to be before the drs will consider referral to a surgeon . I can still walk , but the joint below my big toe gets very sore . It is not absolute agony , but it's like walking on a very large marble , just under the joint. Walking barefoot is out of the question .
Hope you are all mostly pain free , as much as possible.
🤗
Morning! I know exactly how that feels. I'm so sorry it's hurting so much. I don't know the answer to your question but I thought I'd let you know I understand. I'm on so many steroids at the moment that mine is a little better. Big hug x
Hi Georgina
Thanks for the reply .Glad to hear you are feeling a little less pain , albeit with steroids .
Thanks anyway
Gentle hugs to you ! X
I am waiting for surgery on my hammer toes,i go back next month to see the surgeon and he has said that then he will will put me on his list. The wait was due to my back surgery.xxxxxx
Hi Sylvi
Thanks for the reply ....I hope your back is feeling better by the day ! Hope you don't have to wait too long for foot surgery .
Xxx
🤗
Hi strayleaves
I had surgery on my toes and foot, plus tendons cut and re attached, just over a year ago.
As mike said, Initial referral to orthotics who didn't think orthotics would help. This referral took about three weeks. Back to rhuemy two weeks after that and he referred to surgeon. Took four weeks to see surgeon who agreed surgery the way forward. From that day, to being admitted, it took 8 weeks- seemed forever but retrospectively, I think it probably moved along quite quickly.
However, after saying this, the surgery wasn't successful and four of my toes remain broken so I will need to have them redone!
There's nothing as painful and debilitating than walking with damaged feet.
I wish you well going forwArd.
Marie
Hi Marie
Thanks for the reply . Sorry to hear your surgery was unsuccessful. I bet you aren't looking forward to going through it all again.
I have a feeling orthotics are not going to do a lot , however I'm happy to try anything.
You are right ...it is very debilitating walking with very sore feet!!
😩😩
Xx
Three months from when i see the surgeon next month,so it give me plenty of time to recover from the back.xxxxxx
Hi Autum, ( stray leaves) get it ? I would firstly get the doc to refer you to a Podiatrist (foot doc) they will then supply orthotic insoles or send you to a orthotic specialist.
Now the reality check I saw the podiatrist 2 mths ago who referred me on after hearing nothing I contacted them I was told that there is a 9 mths waiting list.
My family contacted a private orthotic specialist whom I saw yesterday he was very though,the examination took about 3/4 hr. I should have the insoles in about a week.after suffering so much pain like walking barefoot on pebbles I'm looking forward to getting them.I hope this info is of some use and you don't have to go private in your area.
Regards Mike.
Hi Matahigh (get it ?) , 😂
Thanks for your reply , much appreciated! 😀
I would say there's a very long waiting list to see a podiatrist here as well . I will probably have to go private I'd say.....
I have heard those orthotics are very expensive though ....
Good luck with your orthotics , I really hope they help a lot !
Karen
Thanks Karen Matalow French sailor not me like you just a handle.
The Orthotic consultation was £47 the insoles will be £80 so all in all it should be worth not having to go through 9 months of agony.Hope you get some relief one way or another.
Regards Mike
Hi mike
Thanks. Haven't heard of the sailor ....
I've heard that inner soles can cost $300 plus (Australian) , and need to buy the shoes then as well ! I guess you have to do what you have to do . ....
Good luck and I really hope you get some relief too.
Karen
I am just going through this at the moment. Podiatrist then referral for orthotic shoes - $330 AUS then if that doesn't work orthotic inserts which will be about $600. Way too scary how much I shell out on this stupid disease. If can get your GP to do a care plan you can see the podiatrist for 5 visits for almost nothing depending on what they charge. Good luck
Whoa !!! That's insane . How are we really suppose to afford things like this .....when you have to cut down on work , therefore a whole lot less $$ coming in to the household ..... I guess what is sad is that people would then be thinking twice about weather they really , really need to see that podiatrist !
Thank you very much for the info. Very much appreciated . BTW , are you from nsw?
Thanks
Karen x
I think twice about doing things like mri and other expensive tests. Health care for the tich really like they have the US.
I am in Canberra so surrounded by NSW!
I decided to go to a Podiatrist. He was fantastic. He took X-rays but was able to identify the issues by physical exam. Clearly provided several options for OA, bone spurs etc. My mother in law has been trying to have me see her doctors for years and this time I di. The down side is he is about to retire lol. He did provided DVD's and a written report so that I would not need to repeat these tests. Orthotics and good shoes 👠 ha ha
Hi
Thanks for the reply , Damaged , much appreciated. Shame he's about to retire ....... he would no doubt know somebody good who you could see , when he retires. I hope so for your sake .
Take care
X
I have chosen to let the joints become eMobile or fused. I will not submit to any surgery. At least until absolutely necessary.
Hi Damaged
Sorry for my ignorance but what's eMobile (sounds like a phone plan...) 🤷♀️ Is that the same as fused ? How do u choose fusion
( is that a procedure , or is that what happens if you don't do anything ?
Thanks x
Mobility was what I meant not phone lol
Yes the bone is growing over the joint so that it will eventually fuse. I can no longer wear heels 👠 so solid sole will prevent movement. The joints in my feet will lock in bad position if I bend it so no more bending.
I thought the bone was eroding not growing ......?
.Anyway ........mm another crappy RD effect
Not to worry ......
X
It will be difficult to describe without pictures but normally the bones that meet at joints have round smooth edges. Picture your foot in a six inch heal. Like on tip toe. Because the edges are ridged they lock together.So now I must wear solid sole to restrict further friction and it will eventually stop moving. Surgery would be required to maintain mobility.
Thanks
I think I know what you mean....lol
But it's not a laughing matter really , I know ,
To not even be able to wear the shoes you would like to ....
Or for that matter, even to be able to walk painfree .....
I hope your feet are a little better and not giving you too much grief, since you've been wearing different shoes.
Xx
Oh I know that pain! I'm not too sure about severity before surgery is considered, but it would probably help if also ask to be referred to a Podietrist who may be able to address your problems, suggest appropriate footwear & maybe something to ease the pain your big toes are giving you. Customised orthotics have helped to a degree but it's not sorted the corns on the balls of my feet, they have to be removed regularly. A word of caution though, unless a digital laser scan is taken of your foot/feet orthotics should be built up using a temporary insole over a number of weeks. Mine took around 8 weeks or so, building up gradually so your feet adapt, this way your problems won't worsen. I also have metatarsalgia & what helps the pain my big toes give me is Pernaton gel, it gives temporary relief but the bonus is it doesn't interact with any meds so you can reapply it as often as needed. Does the pain extend up to the bone mid foot? Have you had feet x-ray'd? That should show just how extensive the damage is.
You have my empathy Karen, sorry I don't have experience of toe surgery.
Hi nomoreheels heels ,
I guess you have sore feet history , by the sound of your name ........
Thank you for your reply . I wonder if I can get that Pernaton gel , in Australia.?
Yes the pain certainly does extend to bone in mid foot . Is that indicating which joint may be involved ? Or severity?
I did have feet xrays a few months ago ? About four months ago . Dr said no problems .....normal ..... except for ?? For memory I had ?? Bipartite sesmoids. I'm sure that was it ...... but could be wrong . but my feet are more painful now.
Talking of corns.....I think I could be starting to develop one under the particularly sore toe joint .
X
Sorry Karen, I've only just seen your reply, I didn't receive an alert. Anyway, yes I have sore feet history, although I now have to wear a heel or a wedge as long as I have some height, nomoreheels is now a misnomer! I was diagnosed from the disease being in my feet & generally depending how they are depends on how well I'm doing. I have lots of issues with them but hey ho.
It seems to be specifically my big toe involvement when I have pain in the mid foot joint, I could draw a line from the start of the pain to the end. I do have erosions shown on X-ray from diagnosis but being under medicated has caused other problems, the walking-on-pebbles feeling as I've lost all the fatty tissue in the balls of my feet, metatarsalgia, collapsed arches causing overpronation, daylight sign etc. My Rheumy didn't examine them for two years despite me asking her to, her reason being they're not included in the DAS 28, don't ask, it made no sense to me either!! She eventually did examine them when I'd nothing else to report & I got an apology, an increase in meds & a referral to a Podietrist. Another 2 years down the line & things are getting better but of course the damage is done.
I'm not sure if Pernanton gel is available in Australia, sorry, although the ingredients include New Zealand green lipped mussel extract! This link gives a pic & the ingredients hollandandbarrett.com/shop/...
Sesamoids are bones that are connected to tendons or are embedded in muscle, unlike normally where bones which are connect by joints. Yours that your doctor mentions are the small ones, underneath the foot near the big toe. Bipartite means of two parts. Can be v painful. Also it is a corn you're starting with I'd not try to deal with it yourself, ask to be referred to Podietry or see a Podietrist privately.
Hi there, I am a podiatrist and agree with the above regarding insoles/orthoses and shoes.
At a conference a couple of years ago a new range of "prettier" shoes have been made for ladies called Solace - produced by Reed Medical and available through the NHS - not sure if that is everywhere in the UK though, there was a cost, but they were specifically designed for the RA foot. Not your usual black leather, pretty coloured leathers and ribbon laces, as they found so many shoes made for people (black leather) where not being worn.
Regarding your foot, have you had Xrays, are you being treated for RA with meds, what is your history regarding RA? Hopefully you have seen an RA consultant and nurse, podiatrist through the NHS? There are NICE guidelines on the process of treatment for a patient with RA.
The insoles/orthoses are meant to provide shock absorbtion and tailored to suit your foot shape in a good fitting shoe with hopefully room for the insole in the shoe to be removed to allow space for your new insole/orthoses to fit inside. Lace up and wide preferably.
As far as surgery is concerned that really needs to be discussed after imaging has been taken so the surgeon can see what he/she is dealing with.
There are private podiatrists that can do the above, make orthoses, take Xrays, ultrasound, etc.. so it all depends where you live and how much of a hurry you are in.
I wish you the best of luck, if you want more info on Solace or NICE, just let me know
Kind regards
Hi
I would really appreciate any info onSolace and NICE .
Thanks again
Karen
nice.org.uk/guidance/cg79/c...
I hope these links work? If not, take the website back to the "co.uk" or "org.uk" part and search once you get there 
Best wishes
Not quite my definition of "prettier" sadly...and most lace up which doesn't work in the mornings. Ah well, maybe one day I'll find something.
A vast improvement on the old NHS made black leather boots and suchlike though 
Very true! I was just getting excited by the idea of something truly lovely. Throwing away a cupboard full of pretty shoes still haunts me.
That reminds me of a research project that was done at my Uni about women with RA, doing exactly that....throwing away beautiful shoes and how it made them feel 
We did a project on women and their shoes and their identity, it's pretty powerful stuff these shoes/boots/etc...
I cried. A lot.
jfootankleres.biomedcentral...
Many thanks for your kind response. I'm fairly new to this foul disease and am still trying to get my head round it. I can identify and empathise with every point the subjects made in the survey. The intrinsic unsuitability, frivolous and often painful quality of retail shoes are the very reason I love them so much. I have trainers. I have 'sensible' shoes in many colours and my heart sinks when I have to wear them. My grandmother would have considered them frumpy. Birkenstocks are fantastic for the ageing hippy that I am but parties and events will prove a challenge. Sorry for sob-fest. It's a subject close to my heart.
J
No you are right it is a nasty disease and can't imagine what it must be like to live with, you are very brave.
I think the subject matter was chosen at Uni as it does throw up so many emotions, so a good topic to write about - to pass the degree! Also, doing the study must have given the students an increased sense of empathy to help them in their future with people like yourself, so making them better practitioners, hopefully.
Yes, I love a birkenstock, had some bright green ones once, my family hated them LOL!
Even though I do not have RA, I look at the pretty shoes, I squeeze my feet into them and just say to myself, nope, I cannot bear the pain.
I would dearly love to develop a "last" that was wide enough, deep enough to accomodate a beautiful shoe that was comfortable, it is a tricky area. The lasts that are used by all the regular shoe shops are extremely narrow and pointy... so not helpful.
I keep getting all the new wide fit shoes brochures and "gradually" they are improving, they are not beautiful yet, but slowly I am seeing changes, different colours, fabrics, textures which is nice to see, there are still the frumpy ones... but some people like those, or have no choice....
Keep looking, I am hopeful the beautiful comfortable shoe is out there in someones' mind somewhere
Best
Not brave, sweetheart but thanks for the compliment. There's been many a wobbly lip moment, believe me. It hits you right in the feels when the fripperies of life are snatched from you.
J
{{{hugs}}}
I know how you feel. Having to get orthotic shoes the other day was the last straw in five and half years of crap. Ugly mary jane shoes as I refused to wear lace ups. I hate my body I really do. No more pretty shoes.
Do you have Clarks shoes over there SOM? I know it depends on what probs you have with your feet but I've bought a couple of pairs of lace ups this year, they're really on trend, comfy, room for my orthotic, lots of wiggle room for my toes, very supportive & best of all happily approved by my Podietrist.
I think I can buy them online from overseas, but I have been buying comfy shoes that can take orthotics if needed. Apparently they aren't good enough either as I have particular problems, don;t ask me I stopped listening to what the technical terms are a couple of years ago hahahaha Anyway I will get the orthotics hoes in a few weeks and if they don't relieve the pain and the way I am now walking then I have to go for the orthotics which are about $600 estimated. I don't think it will fix all the pain but might help with the awkward way I am walking now because of the pain!
What??!! That's near enough £365! Crazy mad, how can they justify that. Well, if that's what it takes for comfort with RD ravaged feet then I guess you've little option, though I do hope the shoes when you get them help the way you walk, if only to save your money!
I wouldn't recommend buying online anyway without being able to try first, I had to try a few on in the shop before finding ones that fit properly & one pair I had to get in a 5.5 to accommodate my orthotic (normally I'm a 4).
Hope you've been ok, not seen you around much lately?
It is horrid and they were the least expensive shoes at $330 scary to think if I have to get the orthotics. I feel I have been haemorrhaging money for the past 6 months or so with one thing after another I have spent about $4,000 on just medical stuff. I think I just go to work to afford all this hahaha.
I have been really sick with a very bad reaction to mould which nearly killed me as I got severe asthma and then developed a chest infection on top of that. Back to work after 3 weeks off and have just been too tired to go online much. I have been reading posts, just not much interaction. How are you going?
I've been tempted to let an artist friend loose on them with leather dyes/paints. I also have a hot glue gun and I'm not afraid to use it!
J
I opted for the most outrageous type they had which was patent leather crocodile print. Woohoo ugly shoes in crocodile print
I wanted to 'like' this twice!
I can confirm it makes you feel rubbish. I had some beautiful & quite expensive pretty shoes. I couldn't bring myself to dispose of my favourites, they're in a box hoping someday I may be able to wear them. I fear not though because of the height. With help from my Podietrist though I am able to/need to wear wedges or a block heel, no flats with my issues which at least make me feel more normal when going out somewhere nice. 😊
Hi and thank you for taking the time to write your reply .
Yes my rheumy just said my ex rays were fine , no problems. (Except for I think they were sesamoid bones ??
As far as history ....will try to be brief.....
RD diagnosed about 14months ago .....very rapid , severe shoulder pain (initially diagnosed with torn rotor cuff, then simple bursitis) . Pain settled somewhat , then other shoulder went. High Crp , ESR , and very high RF . Very strong family history .
Positive CCP and told by rheumy it was very aggressive.
Initially presented to a rheum 5or 6 years ago , for sore feet ...... was told nothing was wrong , did not have RD and I was just depressed.
Presently on methotrexate and Enbrel .
Maybe I really shouldn't comment too much about podiatry .......because I really don't know much at all about it and it's benefits and limitations in helping with RD .
Thanks again , I do appreciate your reply
Karen x
HI Karen
I started a reply to you yesterday then my pc very inconveniently did an update and I lost it all....ggrrrr.
Lucy11 is saying all the right things too.
If your RA was in your feet and undiagnosed this could be causing your pain today. There are flare ups with RA in joints. It is an inflammatory disease that destroys the joints, the medicine is aiming to stop that damage as quickly as possible, in the past they built up slowly with meds, but today they know to hit it hard at the beginning to stop the joint damage.
A really good website to look at too, is the Arthritis Research UK, it explains the disease and what help you can get. This pain explains it well: arthritisresearchuk.org/art...
You can mention podiatry, I don't mind
It is a team effort to get you pain free (or at least controlled), consultant, nurse, podiatrist, physio, etc.... there should be a team working with you to get you to your optimum control.
Perhaps go back to your consultant/GP/nurse and mention your feet and go from there?
There is a helpline number on the Arthritis research UK website, perhaps give them a call?
Best of luck x
Hi squibbitus
Thank you again for the detailed reply.
As far as Team , no , don't have one . I see a rheumatologist , at $130 a visit ( do get some back from Medicare) , no nurse , physio or other .
I better not call the helpline from home (Australia)...... might cost a bit 😀
I will look up the website, thanks .
Yes , and I am already finding that I have shoes that there is no way I could comfortably wear for long .....shame...
xxx
Oh sorry I didn't realise you were sooooo far away. I have not visited, but have family over there, it looks beautiful.
Am I right in thinking the Podiatrists are mainly private in Oz?
Oh what a shame, so there isn't an equivalent of the National Institute of Clinical Excellence (NICE) in Oz? Do the consultants have guidelines they must try to follow? Some kind of rules/regulations? I do not know how medicare works?
Can you use Medicare to claim money back if you visit a podiatrist?
I hope the answers for you are hopeful?
Best wishes
Hi squibbitus
Yes , I'm a fair way away from you all... yep , it's a lovely place alright....glad to hear you have family here...hope they are in a nice area.
Yes , most Podiatrists are mainly in private practice. There are some in the hospitals , and probably a clinic , although I have no idea how long waiting lists are ... I have no idea if the consultants have to follow guidelines ....I'm pretty sure they would have to .
The main trouble I have is that my rheumy works four days a week,has no nurse , and it's just a shame there isn't anyone to talk to when things crop up .
I haven't been to a podiatrist yet , but I think if you have a referral from your dr , stateing you have a chronic illness , then you get some money back , only for a few visits though .
I'm thinking it will be worthwhile seeing a podiatrist , I would like to see one who knows heaps about RD ......
Just wondering ....how do you tell the difference between pain from not controlled RD , and actual damage to the feet ......is it only on a scan you can diagnose this. .?
Thanks for your reply
Best wishes
He is in Woolagong?
Oh, the system is not in your favour it seems
Yes search out an experienced RA pod, you can ask if they have ever got into doing any research in the area of RA and look up their papers, that would show a keen interest on their part. One of our lecturers Simon Otter was over in NZ a couple of years back doing research in RA - I don't know if his name will crop up in any research areas.
I am sorry but I do not know the answer to your pain/damage question, but imaging should help. MRI is good for soft tissue and Xray for bones, ultrasound scans are another option, but not my area of expertise.
Don't be worried about asking lots of questions when you call the podiatrists, you want the best really and a good pod should be able to help you out
Best wishes
Hi and thanks squibbitus.
Wollongong I would say is where your relatives are.....
I will look into searching up for a good pod. And will see what comes up for Simon Otter...
Hope you amd all are having a nice weekend .....painfree of course...
Karen xx
Hi there,
I've had two surgeries in both feet but I don't live where you do so I can't answer how long it takes to get a referral to a surgeon.
What I can say is that even after my surgeries I still had a lot of issues with my feet until my RA was well controlled with a Biologic and MTX. It took about 18 months and a switch of Biologics to calm down the inflammation.
My RA started in my feet but was dismissed for many years until it finally presented in my hands. I had surgery before I was diagnosed which I may very well have not needed had I been diagnosed early enough.
Keep in mind if you go to a surgeon he/she will definitely recommend surgery. It's what they do. If you want to try to avoid surgery then I suggest going the route of podiatry first and work on getting the inflammation in your feet down. You may very well be a candidate for surgery and it may be the best option for you but personally if I could do it all over I would try to avoid it at all cost. (Not easy to do when you are in pain!)
The sesamoid bones under your big toe are two pea shaped bones that are attached to the tendon. If you have inflammation of your tendon and the soft tissue surrounding it this will cause the pain you describe--I can relate!
I was advised not to wear any kind of heal as it would put pressure on those bones but your podiatrist will know what's best for you.
I wear custom orthotics only in my cycling shoes. Otherwise, now that I have better disease control I wear a good quality flat shoe or trainers.
I'm not sure that was any help what-so-ever but I do hope it all gets sorted for you soon and you enjoy pain free feet again!
Best,
Lucy.
Hi there Lucy
Thank you so much for the information . Yes , you have helped.
To be honest , I think I was secretly hoping for a surgical consult ,
Have a bit of surgery done , and hey presto .....brand new painfree feet. Mm miracle cure I think.
You are right too when you say that that is what surgeons do, of course they would be biased.....they would want to do surgery..
I think I will try get a referral soon to the podiatrist. I do wear fairly flat shoes. No high heels. Anyway I'll see how it goes.
Thank you very much again...
Take care x
Karen
Mention it so they know your having problems walking is very important to those with RA , independence is very much a part of our lives to keep it as long as possible that is you should never worry about telling them anything that's worrying you 🌺🌺
Thanks for your reply
DC56. I do hate not being able to walk totally properly, and painfree. Thank you
Take care
🌻🌸🌺
This an interesting discussion as I am going throught the same process. I had juvenile idiopathic arthritis when I was 12 which left me with arthritic feet and a swollen big toe joint. I have got used to the pain from it but this is now compounded with 4 bunions growing around the joint making it painful after walking a short distance. I am waiting for my GP referral to a consultant about how this is dealt with. Three of the bunions are recent, all around the top of the joint and these are the painful ones, the one at the side has been there for many years and I have suppressed that pain.
I am hoping that surgery will be considered and that it will include action on the joint as well, I will follow your progress and update with mine. I live in Twickenham and we all know that there is a postcode lottery for funding, my local CCG has just stopped funding for Dupytrens so it is just as well I have already had surgery on both my hands, but I will need it again.
Hi there
Thank you for the reply . Your foot/feet certainly do sound painful . I do hope you get a consultant referral soon, and that they can offer you some good treatment for your foot.
Take care and yes keep us posted.
Karen
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