Toe problems : Hi all, I have a question regarding... - LUPUS UK

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Toe problems

Benne09 profile image
8 Replies

Hi all, I have a question regarding my toes. I find that a few times a day my toes lock (feels like the joints inside lock up) and then feel like toes are bent for a while and then a cramp like sensation for about ten mins and then goes away. If I am walking at the time it makes me limp for a bit and can be painful. Sound familiar to anyone?

Thanks

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Benne09 profile image
Benne09
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8 Replies
Benne09 profile image
Benne09

Is the big toe and the two toes after that and happens on both feet but not at same time

suzannah16 profile image
suzannah16

yes I get it too and in my fingers. mine can last for 30 minutes or more. by rubbing them I can release the toe/finger but as soon as I stop they lock again. I was told it was "just cramp" but it is far more painful and long lasting than normal cramp.

I’ve been experiencing these especially since my kidneys started deteriorating and I developed lupus nephritis (in Nov). Doctors told me it’s the side effects of the prednisolone and my kidneys that cause these excruciating cramps. Most times I have to stop talking and it hurts to breath, they can last for ages also. It’s difficult as I want to get back to work but can’t afford to have a cramp whilst I am. I find I get them more when I do ‘too much’ activity which is bare minimum compared to normal people. Hot water or a hair dryer can help, as when I get them in my hands my fingers tend to be ice cold (this could be due Raynauds also). I would love if someone could tell me how I can reduce/stop them. I’m hoping the tapering of my steroids and improvement of kidney function does this, fingers crossed 😭

Kerrclan profile image
Kerrclan in reply to ButterflyEffect96

Hi ButterflyEffect96. I experience nerve pain in my hands, discolouration and cold sensations. I recently saw my Rheumatology Occupational Therapist who is also a hand specialist. She gave me soft cotton skin coloured compression gloves which are fitted and free of charge. She also recommended Thermaskin compression gloves which I purchased on eBay for around £20. They provide heat, compression and comfort. I have noticed a great improvement in pain levels. Also a small therapeutic hand held massager which was free. She also recommended hot stones. My hubby and daughter picked smooth hand size stones from my local country forest river, the deeper ones are smoother. I put them in hot hot water and rotate them so I always have warm ones to change. I thought this was a great tip and its the same principal when you go for hot stone massage. I wear the soft gloves indoors and thermaskin when cold or outdoors even on a good day. Another easy one is just sink of hot water to bathe.

Hope these tips help. Kerrclan xx

ButterflyEffect96 profile image
ButterflyEffect96 in reply to Kerrclan

I’m going to have to enquire about that. Will be a bit weird sitting with gloves in work but I really do hope they help 😅. I have my rheumatology appointment next week so will find out what I can get.

Thank you Kerrclan xx

Benne09 profile image
Benne09

Thank you. Hope you having better day today x

Tiras profile image
Tiras

I have some what of the same issue. I was at my orthopedic doctor Tuesday. They said to use gel toe separators. I am trying them now?

Kerrclan profile image
Kerrclan

Hi Benne09, sorry your toes are causing discomfort. Both my large toes causes me pain, stiffness, cracking, balance issues. Some days or feels like someone super glued both toe joints and then cracked them apart when I walk.

I find holding a warm shower head on feet for few minutes helps reduce pain and improve movement. I then use body butter vitamin E cream on my feet twice a day. It’s thicker in consistency than normal moisturiser and smoothness lasts all day. This keeps my skin over joints moist and free to move in my two pairs of socks! I get freezing cold sensations a lot. I also have a heat pad which I place my feet on. Very soothing. And of course good old paracetamol. My daughter is also great at a wee foot rub which I love.

It’s strange as I rarely experience very obvious large swollen red hot joints. It’s hard to describe but to look at my feet that don’t look particularly abnormal. I get soft tissue pain and swelling daily which limits my stamina.

I only ever had my feet xrayed 5 years ago. My OT recently gave me a small handheld massager. I place it under my foot as it’s cylinder in shape & roll it along my foot. This also provides comfort for temporary relief. I also rest then back to graded exercise as able. Also use a water bottle filled with hot or cold water simple relief for stretching plantar facia to keep feet moving as it’s easy to stiffen up.

Hope these tips help Kerrclan xx

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