Here's what my feet look like: You've had my hands, now... - NRAS

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Here's what my feet look like

Titchyj profile image
32 Replies

You've had my hands, now here's my feet. Burning, red hot swollen and painful.

Jan

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Titchyj profile image
Titchyj
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32 Replies

Hello jan

I feel we should get together here, my feet would come out in sympathy with yours and visa versa.

Life is just one big toe.

With mine at the moment, I am sitting in my Ortho chair, feet up and I am shure I feel like I am wearing socks, wich I am not, also our old dog Pip used to kiss my toes and that feels it is happening again, it is not Pax He is sitting elsewhere so my old dog must be showing concern or is He waiting for at least one to drop of as the LHS one is in one ugly state.

I come out in sympathy with you tonight and hope all cools down soon

You could always put them in the fridge and let them cool LOL

BOB

Titchyj profile image
Titchyj in reply to

Thanks Bob for the sympathy, I feel I could put them in the freezer let alone the fridge, I think they'd defrost everything though.

Jan

Mine looked exactly like this last time I had a proper RA flare. But we aren't rheumies Jan and it's the rheumy you need to show these to. Feet can swell and hurt and rage for many reasons other than RA. This is apparently why they don't count towards the DAS28. But nevertheless print them off with your hands and find someone who will take you seriously as you deserve. Txx

Titchyj profile image
Titchyj in reply to

Thanks T, that's what I will do, but they have been seen by both consultant and GP and Podiatrist. They on fire at the mo and this is normal, not just a flare they are like it 99% of the time, will have them hanging out the quilt again tonight. hope they can sort something have my appointment on the 16th April, fingers crossed, my are too painful for that though.

Jan

in reply toTitchyj

Good luck - only a few weeks to go before you get to really show them how it is. Xx

nomoreheels profile image
nomoreheels

I could give you a run for your money Jan! They're bonny compared to mine but I would say looking at them there's disease activity there. How can they say otherwise? Push your case. Have they ever been examined, in this state I mean? If not they definitely need to have a proper look them whether included in the DAS 28 or not. Mine were left too long & at long last I have an increase in MTX my Podietrist is working hard to make me comfortable. I'm sure they're sore so wear shoes you can adjust as they swell, some with plenty of room so they're not constricted. I've recently bought some trainers on the advice of my Pod & I'm loosening them more as the day goes on. Maybe something similar would be an idea if only for comfort. Do you have problems with all anti inflammatories?

Titchyj profile image
Titchyj in reply tonomoreheels

Hi NMHs, they have been seen by Podiatrist, consultant and GP. I've only tried Naproxen, with it affecting my asthma I wasn't offered anything else. I wear shoes I can adjust, but usually fly flots or pavers mules as I can't wear a full shoe, my boots are flat ankle ones and very soft leather with wide fitting. Podiatrist is never the same one so get different advice every time. Thanks for your advice will make sure they are seen at my appointment on the 16th.

Jan

nomoreheels profile image
nomoreheels in reply toTitchyj

I've loads of Fly Flot mules & sandals which I've been asked not to wear anymore as I need full shoes for support so they've become redundant, some never worn because I don't always come across them in my size so if you're a 36 they're going begging.

Can you not request the same Podietrist? Mine has said if I need to see her & don't have an appointment coming up to ask for her & the team will arrange it. Have you not seen anyone recently, I mean whilst they've been like this? Anyway your Rheumy appointment isn't too far away so once your fingers have been examined you can tell them about your feet too, don't be fobbed off! x

Titchyj profile image
Titchyj in reply tonomoreheels

Good morning NMHs, the pod had asked that I try and wear a sandle with the heal strap to give more stability, but I couldn't wear trainers or a full she, the closest are ankle boots in the winter, but they just make my fest hotter. I think our pods are on a rotation system, I have seen one or two of them more than once, but not very often. I'm seen every 12 weeks and have an appointment 20th April. I'm a size 3-4 depends on the style as they get tight on the instep if swollen, but thanks for the thought anyway. Will have a look for some sandles, the only trouble then is not being able to do them up because of fingers and bending (weight probs).

Oh well I'll just have to "suck it and see" so to speak and wait for some indications as to what is going on.

Have a good day

Janx

nomoreheels profile image
nomoreheels in reply toTitchyj

I have one or two Fly Flot sandals with a backstrap which fasten with velcro but my heels for some reason won't allow them stay up so they've been stuck at the back of the wardrobe for some time. What I can cross is crossed for you. x

Titchyj profile image
Titchyj in reply tonomoreheels

Thanks NMHs, I have some nice 3and 4 inch heels that I used to love to wear (wish I could now) and they are at the back of the cupboard too. Must have a clear out I think.

Janx

angel-delight profile image
angel-delight in reply toTitchyj

Hi, I too have same problems with my feet. The pod made me orthodics but can no longer use them, feet just too swollen. What I have found recommendef by my Pod is EasyB shoes, not cheap but so comfy as they have a deep fitting at the front not just a wide fitting. I haven't worn anything else since. I am looking to buy some sandals for the summer. They are not glamorous but I can get about with a lot less pain. Good luck, I took photos too of my hands and feet so they could see how swollen they are. I keep being told the cause is due to steroids. Take care, S

Titchyj profile image
Titchyj in reply toangel-delight

Thanks for your reply, will have a look at the shoes, I also take steroids.!

Jan

Jora profile image
Jora in reply toangel-delight

That's interesting. My main problem now is my knees, but when my feet were also unbearably painful, the steroid dose was raised to 20mg then tapered down to 6mg where I am now. I'm also on MTX, Enbrel, and Hydroxy. But in my case, the Prednisilone seemed to solve the foot problem, not cause it!

I'm going to look up EasyB shoes. Thanks for that recommendation.

Perhaps we ought to have a Shoes from the Back of the Cupboard sale in aid of NRAS!

Jo

angel-delight profile image
angel-delight in reply toJora

Hi Jora, every health issue I have is blamed on the steroid medication. In had good news today, the glucose b test came back as a good result, I just have to do it again 4 months due to taking oral steroids. I hope I get a good result for the TB tests the end of April, again doctors are saying the 2 blood tests came back failing quality assurance due to steroids. I am taking 20mg at the moment up and down between 12.5mg and 20mg for over a year I have come off them completely for short periods of time, in between changes in other meds. My legs are also very swollen taking water tabs, not really helping with the swelling but it does make a difference to the pain in my legs. All the best, I hope easyb shoes help you as much as they help me. Take care. Sue

Jora profile image
Jora in reply toangel-delight

I know what you mean. I have such a love-hate relationship with Prednisilone. I have been on it since Aug 2013. Keep trying to get off them, but get below 5 mg and I can barely move.

I'm going to research Easy B shoes tomorrow.

Night night Jo

Titchyj profile image
Titchyj in reply toJora

Hi Jo, yes I think I'll have a look at those shoes too. I'm on 7.5mg prednisolone, not able to go lower at the moment as I'm not producing enough of my own cortisol, apparently.

Jan

Izzymimi profile image
Izzymimi

Morning jan

So glad you posted your photo of your feet .. My feet have been like that on and off since May last night .. I was fobbed off with plantar facilistis and had steriod injections in both feet but this wore off after 8 weeks and I was back to feet been red sore and painful .

I have looked everywhere for photos on Internet of feet like mine but couldn't find anything until you posted this !!

I hope you get some joy at your appointment .. And that they look at your feet .. Good idea to take this photo with you .

My feet have calmed down slightly but they are not helped with standing most of the day as a nurse !!

Next time they flare I will take a photo like you did and show my Rheummy .

Thanks for posting your photo just shows are lot of us are suffering the same with our feet !!

Titchyj profile image
Titchyj in reply toIzzymimi

Hi Izzymimi, I too was told at one point in A&E that is was Plantar Faceitis when I couldn't put my foot to the floor. Glad someone can identify with my feet, but sorry you have this problem too. Here's hoping they will take a look and suggest something for them at my appointment. Good luck with yours.

Jan

Izzymimi profile image
Izzymimi in reply toTitchyj

Yes good luck Jan let us know how you get on x

Hi Jan, are you by any chance diabetic ? I am type 1 diabetic and if my glucose levels get raised I find my feet and hands swell and burn. Mostly my levels are well controlled but if I am poorly they can rise and the feet/hands issue rears its head until glucose levels drop. My weekly methotrexate jab affects me as well. I do the jab on a Monday. By Wednesday my feet are burning, this lasts 48 hrs, then back to normal, weird I know !! Hubby rubs my feet with brufen gel and it does seem to help, and I wear emu sheepskin mules in the house, the pure wool next to my skin I find soothing and does not overheat my feet.

Of course I also suffer badly with RA and OA in both my feet so any extra burning and heat is a massive nuisance, Like previous comments I would ensure you take photos of your feet to your next rheumy appointment. Lynda xx

Titchyj profile image
Titchyj in reply to

Thanks Lynda for replying, I am Type 2 diabetic, at the moment I am trying to control this with 40mg Gliclizide ad a low carb diet, it seems to working at the moment, but if I eat high carb stuff it does tend to rise so tiring not to at the moment. It's worth talking to my GP about I suppose. Will definitely be taking photos with me to appointment.

Jan

nomoreheels profile image
nomoreheels in reply toTitchyj

My h is Type 2 as well Jan but takes 40mg gliclazide twice daily & Eucreas 50mg/1000mg which is vildagliptin & metphormin hydrochloride also twice daily & never had any swelling to his feet, possibly not RD but related to your blood sugars? He's always been well controlled until he had his op but they didn't bother with his Eucreas in hospital which sent him hyper & he had a struggle to get it back down once home but has now. He has some swelling of his left ankle at the mo but that's due to where they harvested his vein for his CABG. It didn't occur to be about your diabetes, it could be related so

if your diabetic clinic appointment is soon I'd mention it otherwise I'd have a word with your GP. I don't need to tell you how careful you have to be with your feet if you have diabetes!

Titchyj profile image
Titchyj in reply tonomoreheels

Hi there again NMHs, I was on Metformin 500mg twice a day, got very bad diarrhea so they switched to 1000mg once a day, started ok, but got the dreaded diarrhea again so he switched me to 40mg Gliclizide, then recently to 40mg twice a day. I then decided to try low carb diet, to try and loose weight and bring my sugar down. I saw practice nurse before hand and she agreed to the drop of one of the gliclizide, but to monitor my bloods and they are so much better, so long as I don't eat too many high carb foods. She has arranged for me to see a dietitian and this is next Thursday, so will see how that one goes.

I really do try and look after my feet, I use CCS cream advised by podiatrist and keep them moisturised daily. Still they burn.

Jan

digger1 profile image
digger1

hi titchy

im not on the site a lot but when i saw your feet i just had to reply my feet are like that most days and get extremely hot at night like you i sleep with my feet out the bed. the palms of my hands do the same the heat and pain is excrutiating i have sat with my hands in freezer for a bit MAD I KNOW but bliss have thought about doing same with my feet, but not very hygeinic lol i hope you feel better soon xx

Titchyj profile image
Titchyj in reply todigger1

Thank you digger 1, at least I'm not alone with this. Hope to get something done at next appointment, I will let you all know the outcome. Hope you get some relief soon.

Jan

mohikan22 profile image
mohikan22

must be the weather?? today im suffering aching "compressing" feet.. like squeezed into shoes two sizes too small and even after 2 dihydrocodeine and a parcetamol.. no avail.. hot and grumpy i am! its difficult to explain to people who havent got thsi feeling just how it is! anyways. i sympathize with you. hope the feeling passes soon for you.

Titchyj profile image
Titchyj in reply tomohikan22

Sorry you are suffering too, hope to get some answers at my next appointment. Hope you too get some relief soon.

Jan

sheltielife profile image
sheltielife

Have any of you with red painful feet and hands a burning pain which is relieved by the cold looked up erythromelalgia? There is an association I don't know if I am allowed to put a link to it but I will and see if it is removed it's erythromelalgia.org/WhatisE... if a link isn't allowed put it in Google and do a search. It's very rare, I am currently under investigation and it can be caused by RA, or nerve damage.

Titchyj profile image
Titchyj in reply tosheltielife

Thanks for the link, I have had a look at the link, but my redness, heat and pain only affects the soles of the feet and palms of the hands, whilst the pictures show redness all over. Not sure it is the same thing I have.

Jan

sheltielife profile image
sheltielife in reply toTitchyj

Just because it's only the soles of your feet and the palms of your hands doesn't mean it isn't EM! Obviously they use the most extreme photos. e.g. when mine first started it was just the soles of my feet, then the palms of my hands and as time has gone on it's now all my feet and legs up to just below my knee. The thing that hasn't got worse yet is my hands that's still just the palms. It varies from person to person some people have it on their face and ears others don't. The thing is if I sit with my feet inside freezer bags (they have to be that way due to ulcers on my feet and the dressings) in a bowl of cool water not too cold though it not only takes the pain out of my feet, but also my legs. I joined the EM association not really that long ago and now I am a moderator as they said I had given a lot of useful information and never said the wrong sort of thing on forums e.g. naming doctors when complaining, which could be libel.

Titchyj profile image
Titchyj in reply tosheltielife

Thanks Sheltilife, I will look into this more closely.

Jan

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