Can I have some advice Please xx: I’ve got lupus... - LUPUS UK

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Can I have some advice Please xx

Elishaannxx profile image
9 Replies

I’ve got lupus and rheumatoid arthritis and I’ve been getting pains in my feet, knees and is now starting in my back and shoulders and I know that’s my arthritis but I was sat eating my tea and I had really bad pain in my foot, my foot was swollen and I was screaming it was that bad, I had it in my leg last week but was really mild but was really bad in my feet/toes this evening my toes went in to a funny shape and wouldn’t move, eventually they moved back after an hour but have done it again since had anyone got any advice or have an idea what it could be or has it happened to anyone else before I just want to know what it could be, I think it’s my arthritis but not sure, I’m back to see my rheumatologist on Monday and I will explain it to them and show them pictures, thank you x sorry about my toes not painted them In a while😂

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Elishaannxx
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Tiras profile image
Tiras

Yes, I know exactly what you are experiencing, with your feet. My doctors have me using gel toe separators. (I can’t post a photo here?) but, look at my post on Lupus skin issues and I am using them. They help with cramps, and pain. They are inexpensive from amazon. I wear mine daily at home. They will also straighten toes, and joints, which also helps keep the cramps and drawing away.They do take some time to get use to, so start out with wearing them for short periods at a time. I can wear mine all day and night now. Yes, it does make toes straight. The toe separators can also help your posture, which in turn could help your back.

I have to go barefoot 100% of the time now due to Lupus skin issues! Actually going barefoot has help, foot, leg, knee, and back pain. You stand and walk in the normal position barefoot, shoes can actually shift your body position. Try going barefoot more?

I hope this information will help you. However, like anything else, just because it help me does not mean it will work for you?

Wishing you the best!

Elishaannxx profile image
Elishaannxx in reply to Tiras

Thank you so much, I’m going to my rheumatologist on Monday so I will explain it to them and see what they say, I will suggest what you have said if I remember ah and see what they say, I do bare foot around the house most of the time as don’t like wearing socks on my feet, I also have arthritis socks but they haven’t done anything x

Tiras profile image
Tiras in reply to Elishaannxx

Yes, it is always good to check with your doctor and or doctors!

As for me, I make notes, so that if something happens or comes up between doctors visits I can remember to ask. I have folders with Lupus issues and keep up with them. Especially my skin issues. I take photos once or twice a week to keep up and to show the healing process. Which by the way is extremely slow! The Lupus ulcer on my right foot has been there for almost 3 months! It still has a ways to go before it heals. However it is very slowly healing.

As I said earlier I now have to go barefoot 100% of the time even out in public, shopping, restaurants, etc. I have been completely barefoot for 2 Years, and barefoot 95% for 5 years before. For me being barefoot has actually help? Honestly, even if I could wear shoes now, I would probably still choose to be barefoot?

Fortunately, I live in Alabama, in the Deep South of the U.S.A. So our winters here are mild, so barefoot year round is really not an issue for me.

DJK99 profile image
DJK99

Hey there - I had this for a long time - and even went to the gp who prescribed(shock horror!) Quinine! I read up about that and decided to take a raincheck considering the side effects ;)... because I remembered... I used to take Holland and Barrett product Magnesium/calcium/zinc - three tabs a day and hey presto - no more cramps up my shins and in my feet and toes... it was excruciating and frightening so I totally empathise! Please get to H&B and get some of these... I think there is a buy one get one half price on right now... it really works as lack of magnesium brings on muscle spasms... and it aint any fun eh?!

Look forward to hearing how it goes if you do... it works fast! D

ps - drink lots of water all day too..... important.

Elishaannxx profile image
Elishaannxx in reply to DJK99

Thank you so much xx

DJK99 profile image
DJK99 in reply to Elishaannxx

did u try it? x

Elishaannxx profile image
Elishaannxx in reply to DJK99

Not yet, I’ve got my rheumatologist appointment tomorrow so going to see what they say xxx

I get these cramps also!!! Sorry I had to exclaim because I viewed your picture and that’s how my hands and feet get it’s difficult to describe unless someone witnesses it. My rheumatologist thinks it’s to do with my reaction to high dose steroids so I’m hoping they calm down as my steroids are tapered. As for preventing them I really don’t know, I just make sure my hands and feet are kept warm and avoid over doing it :/ Also I have these foam kidney exercise balls for my hands (a bit like stress balls) which help my hands.

Elishaannxx profile image
Elishaannxx

It’s fine, my mum witnessed it and she’s coming to my appointment tomorrow to see my rheumatologist so will see what they say I really can’t walk properly it’s so painful to walk xx

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