Painful Second Toe: Hello everyone Knowing how our... - LUPUS UK

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Painful Second Toe

misty14 profile image
37 Replies

Hello everyone

Knowing how our illnesses can come up with quirky symptoms I was just wondering has anyone had or is getting a very painful second toe?. I broke 4 metatarsals in the same foot which have all healed beautifully now but soon after I developed this intense pain which means I can't walk far and it does get better with rest eventually!. It's not broken or dislocated. The toe is swollen at the base and I take steroids for my UCTD condition. I'm going to Podiatry in a couple of weeks who I hope could be very helpful.

Would love to read your thoughts and experiences. Do hope your all coping with our summery weather .Many thanks Xx

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misty14
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37 Replies
suzannah16 profile image
suzannah16

my 3 middle toes on both feet feel like they are being pinched from underneath with tweezers. rheumatology and podiatry both shrugged and said they didn't know what it was and that nothing showed up on my ultra sound. hope your doctors are more helpful :)

misty14 profile image
misty14 in reply tosuzannah16

Thanks for replying suzannah, that sounds like a nerve sensation as you've had an ultrasound and the all clear!. Must be painful and hard to walk.Pity you didn't get more help from podiatry and your Rheumy. My doctors are going by Xray's and wondering if feet changes are OA or RA!. They're not sure at the moment. Hope your as well as possible. Xx

ExtremeDuvetDaze profile image
ExtremeDuvetDaze

I have a painful fourth toe but I think it’s osteoarthritis, it’s always more painful when I’m not taking anti inflammatories or steroids! Fingers crossed the podiatrist will be able to throw some light on the cause and give you some relief🤞.

All these quirky things are a pain aren’t they my lovely... literally 🙄

Big hugs, rest up,

Diane 😘🥰xxx

misty14 profile image
misty14 in reply toExtremeDuvetDaze

Thanks so much for your lovely reply Diane. I can't believe how one toe could be so painful, it's excruciating sometimes and like you it does respond to anti- inflammatories!. I'm hopeful podiatry will help as it could well be arthritis. Hope your recovering and have a lovely weekend. Best of luck for ENT , let me know how you get on. Big hugXx😊💕🌺

ExtremeDuvetDaze profile image
ExtremeDuvetDaze in reply tomisty14

Crikey thanks for reminding me Helen , I’d almost forgotten that appointment was fast approaching what with everything else going on, it’s next Wednesday! that’s come round quickly 🤦‍♀️! Will let you know how it goes.

Catch up soon

Take care with that toe, really hope it eases soon 🤞

😘🌺🌻xx

NeuronerdDoaty profile image
NeuronerdDoaty

I have the strangest toes in the last year. Every morning one or both of my feet will hurt from the top right at the beginning of my toes almost to the tip but not quite on my 2nd, 3rd, and 4th toes. It’s an odd ortho and Neuro pattern. I’m chalking it up ‘this too shall pass’. Best of luck to you.

(Make sure you’re not getting a hammer toe. Glad you’re seeing the doctor.)

Doaty

misty14 profile image
misty14 in reply toNeuronerdDoaty

Thanks neuronerd for your reply. Mine is the other way round from joint downwards to the base!. We do throw up painful things with these illnesses!. Have your Ortho and neuro come up with any explanation or treatment for it?. Xx

NeuronerdDoaty profile image
NeuronerdDoaty in reply tomisty14

Not a thing. Sorry. They both said osteoarthritis and try new shoes. It didn’t help.

misty14 profile image
misty14 in reply toNeuronerdDoaty

Sorry neuronerd you didn't get help that worked. Our overall treatment needs to be better to sort out problems like this sometimesXx

cpops profile image
cpops

Perhaps you have developed arthritis in it! Can happen after an injury.

misty14 profile image
misty14 in reply tocpops

More than likely cpops, will see what podiatry say!. Thanks for replying. X x

Oshgosh profile image
Oshgosh

It’s so difficult when you have lupus.you wonder is what goes wrong is the lupus or something else.in the past before diagnosis,I used to think that I was just unlucky/difficult/ allergic because of all my symptoms,now I have realised that a lot of it is due to lupus.. hope podiatrist can help.

misty14 profile image
misty14 in reply toOshgosh

I do agree Oshkosh, it's easy too for doctors to blame everything on lupus when it just could be something else suddenly!. It can be hard to know. Have you recently been diagnosed after a struggle?. I hope podiatry can help as it's very painful but seems ridiculous as it's a small toe !. X

Matt80 profile image
Matt80

Mine are my big and second toe in both feet

Steroid injections for me next week under general anaesthetic it did work for me a few years ago

Hope you get it sorted soon

misty14 profile image
misty14 in reply toMatt80

Best of luck Matt for those next week. Can I ask which Consuktant is doing them?. Is it for arthritis?. I did have a local anaesthetic in my toe and it worked for 48 hours. Blissful that was!. I think I need a steroid injection. Did you get a long time relief?. Do hope it's good again for you. X

Matt80 profile image
Matt80 in reply tomisty14

Yes I have Rheumatoid Arthritis, SLE ,

I was sent to see a Orthopaedic surgeon ,

Thank you

misty14 profile image
misty14 in reply toMatt80

I can't imagine how much pain you must be in Matt to have it on both feet in two toes!. Walking must be hell if your anything like me as it just makes it worse!.

Interesting and tough you have RA and lupus. They're not sure if I've got OA or RA and lupus and I've been referred to an Orthapaedic surgeon who has said there's an op he would do if all else fails!. Do hope you get good relief next week. Good luck.

Roarah profile image
Roarah

Some differential diagnosis to consider, hammer toe, gout and since you mentioned breaks, osteoarthritis. Hope you can find a solution to elevate the pain.

misty14 profile image
misty14 in reply toRoarah

Thanks so much Roarah for your very helpful reply. Lots of possibilities there, don't think it's gout as already on an anti- gout treatment for something else but can be very painful. My Rheumy's not sure if it's OA or RA seeing my foot Xray's and how that foot has changed due to swelling!. It will be interesting what podiatry say!. I'll post an update. Hope your keeping well. X

DRunnerchick profile image
DRunnerchick

Just another thought that can affect the second toe especially if you have a longer second than the great toe, is neuroma. Of course they can form even if you don’t have a Morton’s toe (where your second toe is longer) but they can start small and cause pain, numbness and cause increasing symptoms and eventually a ball like cyst will form at the base of the toe.

D🏃🏽‍♀️

misty14 profile image
misty14 in reply toDRunnerchick

Thanks very much drummer chick for your helpful reply. Interesting what can happen to us. My second toe is about same height as big toe!. It is swollen at the base so I'll keep an eye on it. I've waited over two months to go to podiatry so really hope they can help specially as it's very painful. Do hope you are keeping as well as possible. X

DRunnerchick profile image
DRunnerchick in reply tomisty14

Misty14, I’m sure the podiatrist will be helpful - they only do feet! I’ve been a runner for 41 years and my feet are very important to me and I have had quite a few problems over the years. Needless to say, I have lived to tell the tale! 😏 I hope all goes well and you get it sorted. Please keep us posted. All the best🍀👣🍀

D🏃🏽‍♀️

misty14 profile image
misty14 in reply toDRunnerchick

Thank you for your lovely message runner chick. It must have been really hard having lupus as your such an active person!. Hence your great forum name. Thanks too for your encouragement as sorry you've had a lot of problems with your feet. I've been fairly active despite lots of health problems but this toe is so painful at very little walking which is getting me down. Can't wait for podiatry and I'll keep you posted. Hope your as well as can be at the moment. Xx

KayHimm profile image
KayHimm in reply toDRunnerchick

Yes, I hadn’t even thought of that! I thought I had an ingrown toenail that hurt terribly when I walked and later caused numbness in the toes. It was a Morton’s neuroma. It was a podiatrist who diagnosed it on exam.

I have lots of rather silly problems with feet just now. I have a large toenail bed that hurts when anything touches it. My new podiatrist says it’s a corn on nailbed and has to keep cutting away this corn through a small hole at top of my nail that he’s made!

Also I have a Morton’s Neuroma which inspired my user name as it sometimes twitches or vibrates uncontrollably when I bear weight on it! The podiatrist has inserted a pad to help my dropped arch in metatarsal area - seems to have helped quite a lot as it has been really affecting my gait lately. Have you considered a Morton’s Neuroma yet?

On the other foot I have a very painful burning little toe most nights which also goes bright red?! I wonder if this is due to sciatica as I have a herniated disc on this side - but I don’t have other symptoms if so.

When I had RA-type symptoms 6 years ago my entire toe pads on both sides became so badly inflamed that it felt like I was walking on marbles and my GP was told by podiatrist to get me on high dose of Pred so he could actually examine my feet properly as they were too swollen to examine. Now they mostly just feel all skin and bone and half dead with neuropathy and Raynaud’s. It’s weird how many these of symptoms can come and go over the years.

Hope things improve soon Misty and I won’t say best foot forward I promise!

Txxx

misty14 profile image
misty14 in reply to

Hi twitchy, thanks for your helpful reply and I'm sorry your having so many problems feet included. Looks like going to podiatry could be really helpful to me as I too have fallen arches so the metatarsal pad could work. Interesting how they were when you had been diagnosed with RA. Similar to mine as they're very painful and swollen . My Rheumy isn't sure if it's OA or RA. Trouble is I need to reduce the steroids which I am and it's not helping my swollen feet!. I've had to lower the dose of Hydroxy I can take due to side effects which hasn't helped the toe pain or my joints!. It's a never ending juggle which you know only too well and interesting though how your feet have changed over the years which gives me heart. Hope your burning toe settles, mine is so painful with walking!. Really can't wait now for podiatry in a weeks time. Thanks for your good wishes. TAKE CAREXx

Lily77 profile image
Lily77

Hi Misty14, thank you so much for the lovely quote! Very sorry to read that you are in pain with your second toe. According to my research and personal experience pain in odd joints is common with lupus. For example, I get pain in one or other of my thumb joints occasionally. It is usually because I have overdone it but I also find that my joints respond to changes in barometric pressure. Again thank you for posting the encouraging quote, with very best regards, Lily

misty14 profile image
misty14 in reply toLily77

Thank you lily for your lovely reply and glad you like the quote, will look out for some more. I too get pain in my thumb joints as well and with feet too my Rheumy isn't sure if it's OA or RA!. Are you on any treatment for your joints like Hydroxy?. I do find I ache more in the heat. Do you?. Thank you again for your kind thoughts and I hope your joints are better soon. Xx

Lily77 profile image
Lily77 in reply tomisty14

My apologies Misty14, for taking a couple of days to reply. I take corticosteroids, hydroxychloroquine and azathioprine - so the full compliment - having experienced a massive flare in 2012. The latest research on weather affecting joints was found not to reach the required level of significance to constitute proof. I.e. 10% or above. However, the lead on the research remarked that the study still showed that joints could be affected by weather and that patient experience was valid nonetheless at say 6%, even if that did not meet clinical benchmarks. So I know that I am particularly affected by changes in barometric pressure and that stormy weather really gets me. With my very best wishes, Lily

misty14 profile image
misty14 in reply toLily77

Never worry lily about taking a while to reply!. We've all got life and health that gets in the way!.

Could I ask what dose of steroid your on and Hydroxy?. Hope the Aza has helped you reduce the steroids. I'm sorry you needed all these drugs after a big flare!. I'm taking Hydroxy and steroids but finding Hydroxy hard with the side effects despite being on a kinder brand. Trying to reduce the steroids , made it to 6 mg . It's all a hard juggle!. Interesting research you've found about the weather affecting us!. I can't say I've noticed any difference apart from heat unlike you and my mum who has OA and she's definitely affected by the weather!. It is an interesting line of research that maybe could be learnt from!. I do hope you are coping with this heat. TAKE CAREXx

Lily77 profile image
Lily77 in reply tomisty14

Dear Misty, thank you for your understanding and again I got busy for a few days, then had some payback and had to rest for a day before replying to you. Now re corticosteroids, I am on prednisolone. I was on 25 mg ( v v tough on my stomach - lots of Zantac - was allergic to lots of omeprezole) but then came down to 15mg. The drop from 15mg to 7.5mg which is the maintenance level which I am currently on was sooo hard!!! I did it by random method. I am so impressed that you are on 6mg. Hydroxychloroquine - I'm on 400mg per day - I am better in temperate conditions rather than extremes but warm weather overall better than sustained rain and cold. Again very well done on getting down to 6mg.....I am hoping to mount an attempt on 5mg when my rheumatologist agrees. Wishing you the very best, Lily.

misty14 profile image
misty14 in reply toLily77

Don't worry lily, about paying a price for things that delays what we can do!. It happens to us all so if we don't understand nobody else will!.

Thanks so much for being so encouraging about the steroids!. Would it surprise you to know that it's taken me 3 years to get down to 6 mg and I too was on 25 mg to start with!. I totally agree how hard it is and Hydroxy has made my reduction to 6 mg the best I've done. I'm going to do 5.5 mg next week, a dose I've never been on so a huge milestone for me!. Hope you will be able to do it too. Are you seeing your Rheumy soon?. How slowly are you reducing?. I'm doing 0.5 mg a month so very slow. I think you've done so well to reduce yourself as it's very hard!. Good luck to you and I hope you make it. Xx

Lily77 profile image
Lily77 in reply tomisty14

Hi Misty, I really appreciate your reinforcing and encouraging words and also for reminding me that you can come down off steroids in 0.5s. By the way I don't think 0.5 a month is slow at all! Sounds a very sensible method. I had to do it randomised - so 2 days original level, 1 day new, then four days back to normal then another 1 down, then 5 days normal then 2 days down, then 7 original and so on in order to fool my body, as directed by my rheumy. My body clocked onto anything ordered. I am seeing my rheumy next week and she's great so I am looking forward to that. Hoping that you find a solution for your toe. In my book I explain and recommend reflexology but I am not sure that this would help here - perhaps an option if podiatry does not help? With my very best wishes Lily

misty14 profile image
misty14 in reply toLily77

Thank you lily for your very encouraging message, particularly about the steroid reduction!. Your Rheumy's method sounds like the Bristol one to me and not easy to remember which day for which dose!. But it's whatever we can do to reduce. I do hope your appt next week goes well. Lovely you have such a supportive, nice Rheumy. Hope she's pleased with you. I went to podiatry today and he has recommended I go shopping for trainers as they will be more supportive for my toes, stop a kind of repetitive strain happening as I walk!. He did ask a lot about the pain and toe. Also by the weekend I should have some new insoles and follow up in 8 weeks!. I just hope it helps as I'm in awful pain. Thank you for your reflexology idea. I can't bear anyone moving the toe so not sure I could do it!.

Good luck next week for your appt and steroid reduction. I'm trying 5.5 mg this week. Let me know how you get on if you'd like to. Xx

bearman profile image
bearman

I had a sore 2nd toe, and the ball of my foot below it was painful, gradually getting worse one 18th months until it hurt all the time I was walking. Podiatry gave me one shape fits all insoles which made it worse then just gave me an out of date catalogue for wide fitting shoes. Rheumatology just said to take painkillers.

Half way round the world I saw an osteopath, who incidentally diagnosed a rotator cuff injury which everyone else was palming off as a frozen shoulder. He did a gait scan, which showed my walking was terrible. He recommended some tailor made insoles, ones for my gait and my feet. They helped my foot almost immediately, though I am still going through the pain of my muscles reacting to walking properly, but I'm getting there.

They were expensive but worth every penny. I'm sure you don't need to go to New Zealand to get help, just keep persevering, don't get palmed off.

misty14 profile image
misty14 in reply tobearman

Thanks so much bear man for your reply. What a story and I shall certainly keep your advice in mind if podiatry are not very helpful to me!. I'm sorry you had such rubbish help from them and Rheumatology!. It is a bit drastic to have to go to New Zealand but with the amount of pain I have at the moment I'd do anything right now!. 😊

Luckily a new clinic has opened in my local town for all foot problems including gait testing so will go if podiatry not helpful!. Trouble is it's so easy isn't it to set up other problems as we compensate for the pain!.

Do hope your muscles soon get used to your new way of walking and the original problem keeps away so you have less pain. X

Musicteach profile image
Musicteach

My troubled toe is my big one and it swells and has a strange, pitted pattern at the top of it, which doesn't appear on any others. I thought it was an ingrowing toenail, but it isn't and yes, it's very painful to walk on, but also to touch. It seems to be getting stiffer. I am beginning to be embarrassed by all the "little" things which take me off to the GP's surgery so often! Am keeping my head well and truly down while the summer heat lasts, but the upside is that the house is getting slowly a good cleaning!

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