Marbles in feet : Hi lovelies , hope you’re... - LUPUS UK

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Marbles in feet

Tiggywoos profile image

Hi lovelies , hope you’re managing to keep warm 😊.

Quick question .. anyone (I’m sure there is) experienced really painful bottoms of feet ? Feels like I’m walking on marbles and can still feel it in bed at night . The long boring leg pain saga continues along with MRI results from the beginning of December (no sign of ). I’m wondering if they could be linked . Saw physio yesterday who said muscle wastage tops of feet .

Hugs to all and any insight would be so appreciated 💐xx

Thank you 🙏

47 Replies

I - and a lot of others in fact - have complained of something similar in the early stages of polymyalgia rheumatica. Felt as if I was walking on a mix of pebbles, sharp gravel and broken glass! And as if our feet were crammed into shoes a couple of sizes too small - or bound up like Chinese ladies had. It usually went once we were on pred so we assume it was due to the inflammation of PMR - doctors look at us as if we are crackers :)

Tiggywoos profile image
Tiggywoos in reply to PMRpro

You’ve described it brilliantly .. jeeze we put up With a lot !! At 3am I thought … am I imagining all this???Thanks so much 🙏

PMRpro profile image
PMRpro in reply to Tiggywoos

I haven't had it for ages - but I don't compromise on pred dose!!!! The first few minutes standing/walking after sitting for a while were horrendous! Once I started to move though it got less. I could only wear proper heavy duty walking shoes - really not a fashionable look ;)

Tiggywoos profile image
Tiggywoos in reply to PMRpro

Did they hurt in bed too ?

PMRpro profile image
PMRpro in reply to Tiggywoos

Can't remember - most things hurt!!!!! But it was definitely worse on standing up and putting weight on them. Have you tried protecting them from the bed covers? I cannot abide tight bedding - I rip the covers out from the foot of hotel beds ...

Tiggywoos profile image
Tiggywoos in reply to PMRpro

They feel better when dangled off the side out of bed .. what a palavor

PMRpro profile image
PMRpro in reply to Tiggywoos

THAT is a typical sign of vascular problems - foot pain that improves when the feet are allowed to hang at a lower position. Has anyone ever checked your arm/ankle BP and the ratio?

Tiggywoos profile image
Tiggywoos in reply to PMRpro

No 😳. Legs throb and feel better when dangled out too . Foot thing is newish.. started in nov . Who would do the arm ankle bp? Gp is 12 and not interested whatsoever

PMRpro profile image
PMRpro in reply to Tiggywoos

The practice nurse should be able to do it, and check the pulses in your legs. If you have a BP cuff you might be able to do it - not sure if the automatic ones will find the ankle pulse though, never tried it. The nurse would do it the old fashioned way with a stethoscope. You just need the numbers - the AB ratio should be close to 1, if it isn't. it needs further investigation by the vascular people. Vascular labs are usually under the vascular surgeons but most good physicians take an interest too.

Tiggywoos profile image
Tiggywoos in reply to PMRpro

Thank you so much for detailed info . I’m seeing nurse Thursday so I’ll ask

That’s the only way I can sleep since my muscle rupture injury October 2020 - RA has crept in to the ankle, one big marble has appeared which reading your post and PMRPROs makes me wonder if 15 months of limping has caused muscle wastage.Never mind though as I have another wonderful telephone call with physio on Friday and that’s the second one in a year….. they really are looking after me …NOT! 😠

Physio tele appointments want to make me scream 😡😡😡! So pointless, negligent and a waste of time . So much info can be gleaned by having a face to face conversation. There will definitely be gentle exercises you can do for sure to rebuild that muscle If there is atrophy caused by limping . I would definitely mention it to him/her as they can send you a link on line so you watch someone doing the exercises .

Big hugs 🤗 and remember you’re important !!!!! X

😃

suzannah16 profile image
suzannah16 in reply to PMRpro

that's exactly how i've described it to doctors only to be told it's probably because i'm on blood thinners. I get swollen bruises too about 1 cm across and swollen.

PMRpro profile image
PMRpro in reply to suzannah16

Pfffft - I wasn't on blood thinners then, I am now. What silly reasoning!!!!!

suzannah16 profile image
suzannah16 in reply to PMRpro

I wasn't on blood thinners when it started either.

Yes , I've had this too . The "walking on marbles" was how I described it to my rheumatologist. This was at the beginning of my RA adventure . It improved with medication but I still get the same feeling during a flare . This is often accompanied by cramp in my feet , where it feels as though the tendons and ligaments are shrinking and pulling the bones of my feet together and over one another . I can almost hear the creaking .

Maybe this is the Chinese feet binding sensation you feel . I too have to free my feet from the bedclothes at night . What fun we have !

I’ve been told it’s plantar fasciitis then a breakdown of fat/connective tissue in bottoms of my feet. My hands have large lumps as well dyupytrens ( spelling) and now my tendons in my legs have same marble like tissue lumps. Walking barefoot is killer really impossible. Compression socks help and good shoes. The bottoms of my feet will feel wet or sometimes sandy or like I have a rock in my shoe and I stop and nope. No rock. Is this the same thing? Thx. Titters

PMRpro profile image
PMRpro in reply to Titters

Mine certainly wasn't plantar fasciitis - the pain was worst on the weight-bearing areas, heels and balls of the foot but the entire foot hurt, right into the bones too.

Tiggywoos profile image
Tiggywoos in reply to PMRpro

Yes bone pain too for sure

PMRpro profile image
PMRpro in reply to Tiggywoos

In my case I don't think it was the bones themselves - more the soft tissue linking them, ligaments and tendons. But it did feel like the bones squashing each other if you see what I mean.

Tiggywoos profile image
Tiggywoos in reply to PMRpro

Yes and sometimes bit like someone screwing little screws into the bones in the low legs Thank you for all making me realise I’m not imagining it and going completely bonkers !!!

Good description

stillsdisease profile image
stillsdisease in reply to PMRpro

My ankle bones hurt in my injured leg but not where the injury happened, grade 3 rupture of soleus and gastrocnemius October 2020 - I’ve read a lot to try and find the cause and suspect Enthetitis (?) Have you heard of this?

PMRpro profile image
PMRpro in reply to stillsdisease

Have I heard of enthesitis? Yes - it is a feature of certain forms of inflammatory arthritis but it can happen due to injury too.

webmd.com/arthritis/psoriat....

Tiggywoos profile image
Tiggywoos in reply to Titters

I think I’ve read before the “wet” sensation can be nerve issue ?

I get that wet sensation in my injured leg on the foot, I suspect I have a nerve pinched or something ….. I won’t go as far as saying peripheral neuropathy as my GP admitted he was nonplussed at it and the physio although thorough on initial examination totally ignored my condition of Stills RA and has even given exercises I could never do due to hip immobility from RA!

Tiggywoos profile image
Tiggywoos in reply to Titters

Break down of fat / connective makes sense though..

Thx. I have all different kinds of neuropathy Going on it gets to where I just don’t want another Dr appt. Just give me a big shot lol

Tiggywoos profile image
Tiggywoos in reply to Titters

I’m totally with you on that titters 😳💐

It sounds like you have neuromas……sometimes a steroid injection under ultra sound helps…or you can have surgery to remove them.I had the surgery…but they returned….then I had the injections which helped a bit.

But that is just my experience,,,,try to get an appointment with a foot surgeon to get a professional opinion.

Rheumatologist’s are not usually interested.

PS…… not only people with AI diseases who have these neuromas..I have two friends who have them & have had similar treatment to me & neither of them have RA or any other AI disease.

Hi

Even though I don’t have lupus (I have rheumatoid arthritis), I started this type of problem when I began using methotrexate. It just feels like walking on pebbles, I also have nodules starting on my hands / fingers. I was told by my RA specialist that there wasn’t much they could do! But I know from others that the nodules can be operated on, so I’ve got an orthopaedic appointment set for 2 years hence!

The one thing that did help was a trip to the NHS podiatrist, accurately measured my feet and ordered some made to measure insoles, which enable me to walk longer distances.

Chris_0

AgedCrone profile image
AgedCrone in reply to Chris_O

I too have RA & I’m off to see my orthopaedic foot surgeon soon…. ….it’s 10 years since I had surgery to remove neuromas ….sometimes called Morton’s Neuroma…..& 4 years since I had the ultra sound guided steroid injections & I’m wondering if I might give them another go…but I get really bad reactions to steroids so I am hoping there might be something new he can try.I reckon if you don’t ask - you might miss out.

Chris_O profile image
Chris_O in reply to AgedCrone

Hi

Where the ultra sound guided steroid injections done by the NHS rheumatologist or did you have to go privately?

Chris_0

AgedCrone profile image
AgedCrone in reply to Chris_O

Yes I went private…I still had PMI back then, but I’ll have to foot the bill myself this time.But I just think of how much I have saved by stopping the insurance & I’m still ahead of the game…..so we’ll see what happens.

This is how my peripheral neuropathy started. Don’t get it more now but feet pretty numb instead. My GP said Raynaud’s. I have neuropathy Raynaud’s and neuromas secondary to mctd.

Tiggywoos profile image
Tiggywoos in reply to

Hi Yayoisfab25That’s horrible for you but interesting as I have scleroderma with bad raynaulds . Do you mind me asking what medication you take please ? Thank you 🙏

in reply to Tiggywoos

For my MCTD (heading most to Scleroderma am told) I take Cellcept 3000mg per day. For Raynaud’s I get Iloprost infusions and Losartan due to nifedipine and others gave me horrible headaches and rashes

Don’t take medication for neuropathy as don’t like these. Insoles orthotic for neuromas are very helpful.

Tiggywoos profile image
Tiggywoos in reply to

Thank you so much for taking the time to reply I do appreciate it Take care of yourself

in reply to Tiggywoos

Thanking you - take care too we sound twins

Tiggywoos profile image
Tiggywoos in reply to

Horrid crappy illnesses 😞.. so glad we have this forum x

in reply to Tiggywoos

I don’t use these forums much until now. Use others more as scleroderma and mild rheumatoid. Can’t type mornings hands bad chilblains but good to meet you 🙂

Tiggywoos profile image
Tiggywoos in reply to

No I never had until this one but it’s a great forum such lovely people all in the same rocky boat . Nice to meet you too 😊. This forum more active than the scleroderma and myositis one

in reply to Tiggywoos

Thanks for tips. using NRAS as very active on there used it many years ago when diagnosed with mixed. but not so much in common with rheumatoid folk now.

This is long but I hope this helps someone. I have AI along with other issues all brought on by an autoimmune condition. Quite a few years ago I began to have the ‘marbles in the bottom of the feet’ scenario. After being referred to an orthotics consultant he dismissed me out of hand and told me to buy a cushioned insole from Boots. They made me feel like I was wasting their time and signed me off there and then. I bought the insoles (stupidly) which did nothing for me. Fast forward a few years later and the pain changed into manifesting in one particular area of my foot; under the ball. After a customised orthotic insole was made for me (again, which did nothing) and I was still complaining of incapacitating pain, they agreed to perform an ultrasound scan. Turns out I had a Mortons Neuroma in both feet. One being much worse than the other. A steroid injection into the worse one did nothing (incidentally on the day of the injection, after the anaesthetic had worn off, I had pain so debilitating that I could not walk properly for a week). The injection did nothing for my pain . Consultant suggested surgery to fix the Mortons Neuroma. I did not fancy the surgery or the downtime afterwards and possible complications of actually cutting the nerves. So, I paid privately to have Cyrosurgery to get rid of my Mortons Neuroma (NHS do not offer Cryosurgery). So much easier, done in a clinic as an outpatient and the downtime of the procedure is negligible compared with normal surgery. At the time of my (thorough) pre procedural assessment the Dr found that I also had 2 Plantar Plate tears in my foot (this was news to me and it had never been found during the ultrasound scan). I now still have pain in my foot but not because of the Morton Neuroma; the operation seems to have worked well. The pain I have now is from the Plantar Plate tears, which ironically may need surgery. The Dr who performed my Cryosurgery said that the tears could have come from having the steroid injection! This is my story and my experiences and I don’t suggest that this is what is happening with you but it may be something to consider going forward. I have been through years of debilitating pain and discomfort all because so called medical “professionals” don’t do their job properly. Do not be fobbed off when asking for help with your foot problems. Hopefully this will help someone not to go through what I did.

Tiggywoos profile image
Tiggywoos in reply to HiveMind

I can’t thank you enough for taking the time to write this .. you’re very kind . I’m so glad that you eventually found some answers and some relief . Your timing is spot on as I have been feeling so desperate with leg and feet pain I went to podiatrist yesterday . He said my plantar fascia was tight .. disappeared for 10 minutes and came back with insoles and strapped my feet . Also gave me wall calf stretch which I did twice yesterday . By the time I got home the pain was worse so took strapping off .

After your post I’m going to try and pluck up strength to speak to rheumatologist.

Take care and thanks again

HiveMind profile image
HiveMind in reply to Tiggywoos

Glad to have been able to help. I hope you get your issues sorted very quickly.

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