Feet and legs …..Ever changing symptoms.

[IsleofWight1]

Good morning im asking if these symptoms are familiar with anyone or if it’s nothing to do with

UCTD/Lupus. I’ve been getting them on and off for a while but they’re getting worse and more frequent.

Pains in my feet which start when I’m sleeping. Aggravations mainly over the top of my feet, but also all over the feet. First of all a lot of flexing and extending would calm them down but now it’s so bad that I have to walk around while flexing and extending them . Last night, two stints of about 30 -40 minutes each., ibuprofen gel and Zapain were needed to get some relief.

Also pain at front of ankle that I have to treat the same way.. This morning my feet and shins feel very sore.

At first I thought it was to do with the shoes I was wearing but I’ve had bad Fatigue since Wednesday evening and have been in bed sleeping.

If you suffer from this too then I’m very sorry for you. It sounds like a minor ailment but you will know it’s not. Do you have feedback from your doctor or consultant?

[IsleofWight1]

I couldn’t figure out how to edit my post to say that there are no visible signs on my my feet or shins and no swelling.

[Spanielmadlady]

Morning IoW. If you click on More edit will pop up in a box.Sorry you are suffering it is hard when you can't sleep as a result . I suffer with my feet and legs too. I get restless legs syndrome ,tingling,burning etc. Some of mine is a result of b12 deficiency and I also have some peripheral Neuropathy which wearing compression socks helps. Have you mentioned it to your consultant? If not please do .X

[Tiggywoos in reply to Spanielmadlady]

Feel for you so much it’s horrible xxx

[IsleofWight1 in reply to Spanielmadlady]

Thanks for the editing tip.

Sorry to hear that you suffer too. I’ll try the socks and will definitely mention it to consultant. Take care

[Spanielmadlady in reply to IsleofWight1]

I had the socks from when I hurt my ankle to help with swelling and support. Then an article popped up about wearing them for PN so I've tried it. I put them on the minute I get up.Enjoy your beautiful part of the world xx

[Tiggywoos]

I’m so sorry you’ve got this too .. don’t get me started on feet 🦶 🤦‍♀️. Was up at 2am only just this morning they are bane of my life . I’m sure it’s linked to the connective tissue diseases . I bet you can relate to this it feels like your ankles are being banged with hammer 🔨. Lidocaine patches made them worse . Sorry I’ve had a right rant 🤦‍♀️.

I’ve tried ketamine infusions , gabapentin, pregab but nothing worked . Ketamine man said Erythromelalgia responsible for the burning and poor blood supply alongside raynaulds responsible for top of feet shin and ankle pain .

If I’m honest the only thing that works is massaging them very gently and stretching like you already are doing . Magnesium spray sometimes helps but at 2am in morning you’re normally all over the place and not in right frame of mind . Walking makes mine way worse so it’s a real balance between walking for pleasure and saving feet for essential things work chores etc .

Sending you biggest hug . Might be worth getting bloods done if GP will do them to check B12 and iron etc xxxxx

[IsleofWight1 in reply to Tiggywoos]

I’m glad to hear I’m not alone in this, although sorry to hear I’m not alone!

I’m iron deficient anaemia atm which is under investigation. I think ibuprofen gel massage eases it a little too.

The lack of sleep is such a nuisance.

Have a nice weekend.

S

[Tiggywoos in reply to IsleofWight1]

Ooh I’ve never tried the ibru gel good tip thank you ! Have lovely weekend x

[Maycontainnuts in reply to Tiggywoos]

I don’t know if it’s just me but 3 days of applying ibru gel to my feet 3x daily and now my hands are rough & peeling. Not itchy but roughness is bothersome. I did wash my hands after each application. I am using exfoliant + hand cream and it’s been 2 days since the last application and the roughness & peeling has finally begun to subside. Just mentioning it in case it’s not just me. I’ll use gloves next time! x

[Mctd]

Morning! I have MCTD and my feet, calves and hands were one of the places I got any symptoms. Next, I developed peripheral neuropathy all over my body. I take amongst other meds, Amitryptiline. It hasn't totally gone, but has offered some relief, I also sleep with a small pillow to take the pressure off my heels as I can't bare them on the bed... Hope you find dome relief J

[Tiggywoos in reply to Mctd]

Sounds mad but lying on front with feet out of bottom of bed gives some relief 🙄

[skylark15 in reply to Tiggywoos]

It doesn't sound mad at all! I have Lupus, Raynaud's, Erythromelagia, peripheral neuropathy and Restless Legs (and hands) Syndrome. I have iron deficient anaemia and have just finished a course of B12 injections.

I talked to my friend, a very experienced physiotherapist about the sleep disruption caused by the RLS. She advised me that 'weight-bearing' might help, and also to try sleeping on my front. I have to walk around anyway during the night, for the EM but I hadn't heard of front-sleepingfor RLS.

I tried it last night and that meant my feet were out of the bottom of the bed, just as you say, TW and it worked! No more foot-knitting/twitching and writhing all night. Magic ☺️.

[soul22]

Hi nice to meet you 😊

I suffer this one foot worse

Mines plantar fascitis

It requires physiotherapy sometimes injections by podiatrist.

Rolling a cold bottle under hell helps it could also be your arches under feet have dropped mine did.

I'm flat footed no medical arch

I get insoles made to ease that cramp pains top feet stiff difficult to flex affects ankle to.

Requires good air cushion support trainers cold ack hel pain make sure wrapped.

All tips from podiatrist

Orthotics therapist

Not my own

Try see

[Graystar]

Hi I’m sorry you’ve been in so much pain with your feet! Somebody suggested compression socks to me, so it’s maybe worth a try.

[IsleofWight1 in reply to Graystar]

Thanks for taking the time to reply, everybody, it’s good to share experiences and information.

[IsleofWight1]

I’m shocked that so many people have this, I thought for a minute I was special!

UCTD /Lupus certainly is the gift that keeps on giving! Just as you’re getting your head around managing one ‘gift’ it gives you another to unwrap!

I was in town today buying some treatment for my extremely dry and brittle nails and realised even that is another gift. 🙄

[Spanielmadlady in reply to IsleofWight1]

I've give up with nails...they just split for fun. Now I've got a myxoid cyst and it's totally wrecked the nail as its right on the nail bed....surprise surprise they often connected with OA and connective tissue 🙄 xx

[IsleofWight1 in reply to Spanielmadlady]

I’ve just bought Superdrug nail hydration varnish, I’ll let you know if it works. Apparently it’s the cuticle area that you have to keep mosturised.

[stiff19]

feet and ankle pains and swellings a curse I feel for you 🤗

[MrsMarigold]

Hi IW1. Yes to all you said. I’m struggling now with the deterioration of connective tissue in hands feet jaw hips low spine. There is very little we can do apparently. I’m on a low dose prednisone 4 mg. which is an added med to 400 mg Hydroxy. As I’ve tried to get to 0 prednisone all my Doctors seem to have different thoughts on the matter of steroids as they slowly deteriorate our connective tissue. My hands and feet are ravaged now with Raynauds and Erythromyalgia but walking on my no fat feet ( they could win a swimsuit contest) began way before low dose prednisone. Good luck. Keep hiking for the rest of us! MM

[IsleofWight1 in reply to MrsMarigold]

I’m so sorry that it’s so bad for you. I hope you get your meds sorted and you find some relief from your conditions. I’ll certainly keep hiking , I’m grateful I can do it. Take care x