Sore feet: Good evening. I have a question for... - LUPUS UK

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Sore feet

Willow7733 profile image
10 Replies

Good evening. I have a question for those who are in the know. Every morning for around three years, I have really sore feet. To the point where I can barely walk. But, after moving around a bit, I am ok. Now they are sore even when I am sleeping at night. Last night was bad. It is a dull pain, and it is under my feet from the heel to the forefoot. At first, it was only one foot that bothered me - now it is both. I am going to see one of those places that assesses if you need shoe orthotics, as I think maybe they will have some insight of what this could be. It isn’t my shoes. I wear sneakers all the time (as my job requires me to be on my feet all day (I am a nurse). I wonder if this is arthritis related, but it is under my foot - not my ankle. It isn’t tendon related as it can begin to hurt during the night while I am sleeping. It isn’t cramping. I am just at a loss. My rheumatologist appointment is in February and I hate to bring it up to him. I brought up another problem with nodules on my ankle joints, and he told me I have to go back to my GP and have him refer me again for this separate problem! Just the runaround.

I was hoping someone here has had this happen and I could get some good ideas to present to the rheumatologist in two months.

Thank you for any insight you can give me.

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Willow7733 profile image
Willow7733
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10 Replies
ShannonB profile image
ShannonB

I’m so sorry you are dealing with this. You should absolutely raise it with rheumatology. I have lupus and frequently have struggled with this. If you do a search you’ll see a post from me when I was up in the night once in agony with it. But most importantly—you shouldn’t be sent back to your gp for issues that are clear lupus challenges. Hopefully rheumatology can adjust your meds to help you. Thinking of you.

Kildonan profile image
Kildonan in reply toShannonB

Definitely raise with your Rheumatologist ..... and get checked out. Foot pain is miserable!!! There is also a condition called plantar faciliitis, may or may not be related to Lupus, but very painful especially first thing in the day as you wake up & eases as you move around. Ask when you speak to podiatrist as there are insoles (half) for the arch area which really helped me. Also some exercises to stretch your foot before getting out of bed were useful for me, stopped you falling over 🤣 as you put you feet on the floor (over time.) I hope you get some relief soon 🤞

Bakbre profile image
Bakbre

What is wrong with your Rheumatologist, maybe you should think about changing him! Of course you should be able to raise this with him, it’s probably Lupus related and you definitely do not have to go back to your GP to be referred again. Goodness knows how some of these Rheumatologist’s get their jobs, much less keep them!

Anyway sorry rant over and I’ll get off my high horse now!

I had the same problem but mine was on the ball of my foot and like you I was in a lot of pain, to the point of not wanting to go out at all. My Rheumy referred me to the Neurologist at the hospital for tests and it turned I had small fibre neuropathy. I was prescribed Gabapentin tablets which unfortunately didn’t work but then it was changed to Duloxetine and that works well. By the way I think that nerve pain is one of the worst pains there is and we have enough to put up with without having this as well.

So stick to your guns and ask your Rheumy or a specialist nurse that you want a referral to the Neurologist and don’t let them tell you otherwise.

I wish you well and good luck.

Willow7733 profile image
Willow7733 in reply toBakbre

I am actually going to see a neurologist as I have been referred for new onset migraines. I wonder if I should mention the foot pain to him?

Bakbre profile image
Bakbre in reply toWillow7733

Definitely mention the pain in your feet as well as your migraines. That’s what you and he are there for. You’re really going through it and suffering at the moment aren’t you, you have my greatest sympathy. I know it’s hard going a lot of the time but you have to stick to your guns and don’t let them mess you about and certainly don’t let them fob you off! We have enough to put up with with this illness.

I wish you well at your appointment and hope you get some answers & treatment. Good luck.

JCZW profile image
JCZW

Morning Willow7733I'm sorry to hear that you are suffering.

I have the same problem, it gets so bad I can hardly walk.

I was referred to a podiatrist by my physiotherapist, the podiatrist I had x Ray's and the podiatrist said that I have severe arthritis in my feet with little mobility. He also said that the fleshy bit under the toes was wearing that's why it sometimes feels as though I'm walking on bone. He has been brilliant and has made me insoles for my shoes which are helping

I have lots more appointments with him as he said it's going to be a long process . He hopes by the end of it I will get enough relief to be able to walk properly.

I hope you get some answers soon.

Graystar profile image
Graystar

Willow I agree with pretty much everything that’s already been said. I sometimes feel I’m walking on broken glass and I have no obvious sign of injury or swelling to either foot but it’s excruciating at times. I also agree that your Rheumatologist is behaving unprofessionally by asking you for a new referral. Talk about time wasting and stalling you!

Maycontainnuts profile image
Maycontainnuts

Hi Willow7733, if it isn’t one thing with lupus it’s another, isn’t it? I can empathise as I’ve been on a foot pain side-trip this past year. NHS services being what they are it’s been frustrating with long referral times . I had to push GP for a referral to podiatry and I knew I’d have to get through the first line chiropody service that deals with external skin/nail issues in order to get on the internal referral track to biomechanics but I know if I had gone via Rheumatology I’d still be waiting! We have to work with the services that are within reach geographically and financially. Anyway, that’s just to let you know I understand the difficulties of getting the help and of being passed back and forth between rheumatologists and GPs.

After decades of issues with both feet things deteriorated a lot and I began to fear for my mobility as I live alone and walking is my main exercise because it’s free. Like yourself, my pain was along the entire sole of both feet and was present 24/7 yet the features did not fit any one particular condition. After many clinical assessments and X-rays turns out I have a mixed bag of contributing factors - peripheral neuropathy, arthritis, plantar fasciitis, tarsal tunnel syndrome, and as someone else mentioned, plantar fat pad atrophy. The latter makes it feel as though I’m standing on cobblestones. Maybe one or more of those is at play in your case. Some factors can be helped if not cured, others cannot, I still have tingling, tightness and general discomfort 24/7 but just knowing what’s going on has been really helpful because I too was at a loss and thought I was going mad because nothing I did helped. Really hope you get the problem identified so that the pain can be relieved. Sending love x

MrsMarigold profile image
MrsMarigold in reply toMaycontainnuts

Wow. You spoke it well. I have everything you have. I went to PT and that helped. I found a massage therapist that works on the lumps of connective tissues. I have several different sneakers and it seems to help to rotate shoes.

stiff19 profile image
stiff19

so sorry this is absurd and happening more and more being told to get referrals because they know you cant get them or they will take an age.you should be able to bring any new problems up with rheumatologist . this is awful and I sufferer it too so. hope you see the neurologist and hes more accommodating. I think we need to be more pushy ,they are supposed to work for us not against us. good luck and you have some good advice here

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