Problem with feet!: Anyone have trouble with feet? I... - NRAS

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Problem with feet!

Rachel43 profile image
19 Replies

Anyone have trouble with feet? I have marble like lumps on the bottom of both feet with more appearing. I mentioned to my rheumatology department who told me they do not deal with damage caused by RA!! I then was sent to the foot & ankle clinic who gave me insoles & told me to try not to walk to much. Really can't be the advice. Anyone any suggestions or their than being drugged up all the time?

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Rachel43 profile image
Rachel43
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19 Replies
Metal-legs profile image
Metal-legs

Really empathize with you Rachel, I am in so much pain with my feet. The joints have dropped so I am walking on bone and it is unbearable. I am waiting for a pair of specialist shoes/insoles to made up which is supposed to take the pressure off the balls of the feet. Other than that I've basically been told to learn to live with it. I can't believe your rheumy team have said they don't deal with R.A damage, have you seen a foot surgeon to hear their opinion?

Rachel43 profile image
Rachel43 in reply toMetal-legs

Thanks for the reply. The insoles I've had are the ones the orthopaedic specialist. Sounds like we have same problem. The operation they can do has not a very high success rate. Looks like I'm stuck with the pain.

Metal-legs profile image
Metal-legs in reply toRachel43

Foot surgery can be risky. I would ask for a referral to have some specialist shoes made, I will let you know how I get on with mine, having a trial fit later this month. Also ask for a drug assessment if your inflammation is active. Sending support x

that's how I started with rd then my ankle was swollen and a few weeks later the knees joined in ,the inner souls did not help me ,the hand are my worst affected at the moment and constant fatigue

Hobbits profile image
Hobbits

Hi Racheal, sorry you are suffering.

Can I ask, did the foot specialist or rheumy say what exactly the lump are?

How do you know they are caused by your RD?

Your describing a class is RD symptom Rachel and how I was diagnosed. I can't believe your rheumy says they don't deal with feet, what a load of cods wallop!!! I am very lucky to attend a musculoskeletal centre of excellence ( Leeds) and get first rate care. If I ever present in clinic and mention foot pain they always take me seriously and say 'let's have a look then". I've had special insoles made by podiatry, ultrasound scans and an MRI of each foot. It sounds like you have inflammation in your feet. Are you otherwise well controlled?

Rachel43 profile image
Rachel43

Kikideelili

They have said it's due to the padding being worn away & I'm walking bone to skin. I only found this out after going to my GP & saying how unhappy I am with my rheumatology department. I have not been controlled this year. I had my first two Rituximab infusions in August but still not feeling much better. Back seeing specialist on 23/12 but don't hold much hope of them doing anything. Beginning to feel like I'm a pain to them.

oldtimer profile image
oldtimer

I had similar problems with the rheumatology department who reluctantly referred me to the hospital podiatrist who gave me a long lecture about not wearing high heels (! as if I could with the pain) and some inserts which were so uncomfortable that I didn't wear them.

I made a private appointment with a podiatrist who took a careful history, made me custom made insoles, asked me to bring the shoes I did things in to look at (and rejected one pair as giving insufficient support), reviewed my progress and then advised me to make an appointment with an foot specialist as the pain was not controlled.

I decided to see him privately too as the waiting list was 9 months - by that time I would have been so unfit! Since then I've had a sub-talar fusion (in plaster for 12 weeks but well worth it) and with the insoles and supportive footwear I'm back to walking reasonable distances.

wishbone profile image
wishbone

Hi Rachel,

Not so much worn away, but the padding on the balls of my feet has shifted forward so I'm also walking on bone, which is not much fun is it! You can ask rheumy about having surgical shoes made up for you..I had a pair made not long after being diagnosed with RA 10 years ago and they did help. Since then, and up until recently, my feet have been pretty much ignored by rheumy despite them getting worse and me complaining about the pain over the years. Got referred to podiatery by my GP a while back to have some custom insoles made up, which do help a little. Had an appointment with rheumy a week or so back and was more than a little surprised when they actually asked to see my feet for the first time in years. :0 The nurse suggested that I consider toe straightening surgery, but don't think I'm ready to go down that road yet!.. if things get worse then I might consider it. I started on enbrel a few months ago and this has worked wonders for me, from my knees up especially. It has improved my feet too and I can now manage to walk a couple of miles on a good day. They are always painful to walk on though..guess it's just a matter of learning to live with it if I'm not willing to risk surgery....

Good luck to you

Karen77 profile image
Karen77

Wonder if they're Gideon's cysts? I have what seems like a fluid sac under my left foot's metatarsal. It mostly doesn't bother me. I wear Vibram Five Fingers, LEMS or just go barefoot.

Hobbits profile image
Hobbits in reply toKaren77

Hi Karen, I will ask my Rheumy about this kind of cyst you mentioned. Over the past six months I have been developing cysts on tops and bottom of my feet. I was told they are 'ganglion' cysts and my Rheumy said he hopes they will disappear once I'm established on Humira. Last weekend I had a terrible flare. My feet swelled so I couldn't get my shoes on and these shoes were 1.5 times bigger than my normal size. I couldn't walk as there was terrible pain with each step. I tried to massage my feet and noticed a huge lump that covered the entire foot pad. I don't know what it is and I am scared. I know about ganglion cysts which tend to be squishy and nodules which tent to be hard. It seems there may be other cysts and lumps I never heard of before, the new one on my foot pad is huge bigger than all the others put together. Lumps always make me think of cancer, which both my parents died of, so I'm scared of what my Rheumy will tell me on Monday. On one hand Im pretty sure what ever it is I have is related to RD because I am currently in a bad flare, but in the back of my mind I wonder if it's something worse.

Karen77 profile image
Karen77 in reply toHobbits

Try not to worry too much. I know that's easier said than done. I think Ganglion cysts and Gideon cysts may be the same thing. For me it feels like a blister that's way deeper down than a normal blister. There are so many odd symptoms with this disease that you never feel ahead of it. like, just when you accept one of your symptoms, a new scary one takes its place! Right now for me it's random burning feelings on parts of my legs. Whatever you've got, even if it's cancer, is already there, so no need to worry about it. I know that's not super positive. I do wish you the best!

Hobbits profile image
Hobbits in reply toKaren77

Thank you for responding Karen, Im taking one day at a time.

corrective profile image
corrective

Yes at the beginning I had lots of small pea sized lumps in my feet! The Rhumatology sent me to physio who molded inner soles to fit into any pair if shoes! This lifted the pad if my foot Off the floor and I did nit suffer unless I went barefoot!!

driffield56 profile image
driffield56

Empathize with you Rachel, I am in pain with my feet. Seen by orthapedic consultant, 2 options surgery to fuse the large the large toe, & pin & wire the other 4 toes to straighten. I have opted for a pair of specialist shoes/insoles. Waiting for an appointment.

Metal-legs profile image
Metal-legs in reply todriffield56

Just to let you know I know someone who has had this same op and it hasn't been successful at all. I think you are very wise going down the shoes/insoles route first. I'm waiting for shoes to be made but it is taking months.

Hi rachel43

Sorry to hear that you are having such problems with you feet. I have put a link below to the section on our website about foot health. I hope it helps you:

nras.org.uk/our-articles-on...

Regards

Beverley (NRAS Helpline)

PS we hear from a lot of people who find UGG boots very comfortable although a little pricey of course.

Beverley

Bettyboop profile image
Bettyboop

Yes I sufferd for a whole year three ,years back where my left foot was so, badly swollen and so very painful had X-rays ,scans in the end ,was given steroid injection which done absolutely nothing to the swelling .antibiotics ,antiflamotrys,still nothing then out of the blue it went down ,I was left with a lump under pad of my foot ,and if I have walked to much without a break or have not rested long ,enough it flares bk up again ,Iv had RA for 14yrs have been on numerous infusions ,methrexate now they have just given my double shot of steroids as foot and shoulder were blown had to wait 7weeks for it I might add ,now they going to raise the methrexat,and change to yet another type of infusion did not think that this deasea was as painful and debilitating as it is x

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