Cold feet feeling

[minka]

What do you do if your feet start to look blueishAny one get this and dont panic. Some one must know this.

[M0wnt]

Hi, It is suggestive that your circulation isn’t functioning as it should, or low oxygen levels? It would be a very good idea to call your GP and ask for a phone appointment and they will ask to see you if they are concerned. Hope everything is ok for you. Take care. Mwnt 😊

[Chris21]

hi minka, as you have a lot of problems in the lower joints could this be related? My feet get cold and can start to go blue which is part of me having raynaulds. Socks on and a blanket can help or a massage of the feet and legs can help circulation. If you’ve not had it before it will be worth mentioning to consultant/GP so that they can check it out. 🙂

[minka in reply to Chris21]

hi Chris they when red feet last night. and my ankle and feet on one leg hurt so bad i can hardly walk on them. its doing my head in as i used to walk 3 miles twice a week. also upsets my guts to.

I'm not one for giving up but i walk for a little while then i got to get back at about 700 yards

all started with a pain in the groin then something jumped out my back to my foot. knees swelled up up on bad leg and I've been struggling ever since all started 3 months ago now.

I'm carrying the left leg with the better one and this as you will know is compensating and making the other bad. how far can you walk and what is your problems please?

[Chris21 in reply to minka]

hi minka, I need to start tracking my distance on walks, as I’m often asked this. If i walk on the flat I can walk for 15 minutes before having to stop for a rest. On a hill it’s five minutes. I try not to give in 😊

I have lupus sle, sjogrens PBC and primary lymphodema in legs. The main problem at present is pain in my back which radiates down the left side, pins and needles in my arm, pain in ribs/ gut and down the leg can feel heavy, cold, cramp, burning, and neck cracks. My left foot also turns inwards for no reason, I often wake at night with it inwards. My respiratory also is a nuisance, not being able to get my breath properly. I had lung function test that says all good, despite having to use inhalers, GP has now said mild asthma/ COPD🤷‍♀️ I had an MRI scan on my spine which has shown some vertebrae’s bulging in base and neck. Saw spine consultant, didn’t think surgery was necessary at present but did say I have no fluid in between discs ( means bones can ‘rub together) and said to keep movement and exercise going.

I’m thinking that my spine could be the problem of all things happening on left side. So I’ve self refferred to physio, to see if they can help come up with a solution as to what exercise will help and if my pain is, joint, muscle or trapped nerves or combination. Appointment has come through for 9th March, I’ll let you know if I get any joy from them 😉

Have you received any treatment, or help as to why you are getting this pain feeling in your leg. I seemed to have temporarily got rid of the feeling of bone sticking through my bum 😂

[minka in reply to Chris21]

No got X-rays 8 the Feb mine seems to be ligaments as well enthesis. I'm going to mix up some apple cider vinegar with water and soak them tonight. When you have a leg out you compensate to the better one. And then your center of gravity moves. For instance put a piece of 5mm wood under your shoe and walk your back etc etc will try to make itself vertical then problems arise. My distance has really gone down since this from first sort out it's a sod.

[minka in reply to Chris21]

let me know how you go on chris. mine seems to have dried out my back and groin pain now with this compensating.

[Hamptons]

yes, often have bluish feet especially in morning. If it’s a new thing check with your dr.

[SecondLife]

I spoke to my consultant about this last Wednesday as my feet are like blocks of ice, she said she couldn't find anything wrong with them and it is unlikely to be part of Raynauds. I use one of the electric foot muffs for about 15 minutes when needed

[SurferGuy]

Hi Minka, I have this but mine is severe to the point my toes blister and peel and I find it incredibly painful and almost impossible to walk. This only happens when it's very cold and I go outside.

I've been prescribed Fluoxetine, which is an anti-depressant as apparently this also improves circulation. But, TBH, it hasn't really worked.

The next step for me is to consider an infusion every winter, which I've been told should improve things a little.

[Tiggywoos in reply to SurferGuy]

thank you for posting this as fluoxetine has been suggested to me for Erythromelagia and Raynauds. I’m really sorry it hasn’t worked for you . I have read good results about the infusion on here . Is that iloprost? Take care

[minka in reply to Tiggywoos]

tiggy no I'm on nothing but paracetomol

[DebbieJ6894]

Sounds like Raynaud's or circulatory issues. A doctor GP or Consultant if you have a hospital appt coming ip needs to physically examine your toes/feet. Keep them warm - I use animal wool plus Iomi socks [now 2 socks on the worst affected foot]. Plus Consultant prescribed Nifedipine which seems to help. If it's Raynaud's, it's important to keep warm all over because heat escaping from anywhere makes it worse - so woolies, hat, gloves etc.

[Tiggywoos in reply to DebbieJ6894]

do you mind me asking if the nifedipine helps with pain ? X

[DebbieJ6894 in reply to Tiggywoos]

I have less pain on the Nifedipine and my toes are def less black, but I still have a bit of pain at the moment. I'm on the lowest dose of Nifedipine and waiting for my rheumatology appt so maybe if they up the dose it'll be better. I hate the winter which always makes this worse. If it wasn't for my daughter and grandchildren I'd move to Spain.

[Tiggywoos in reply to DebbieJ6894]

that’s great thank you . Feel exactly same if it wasn’t for my mum I’d go Spain too 😘

[Debbie_kinsey Administrator LUPUS UK]

Hi minka

Have you spoken to your GP or consultant about this? We’d always advise checking symptoms with a medical professional so they can do a proper investigation, diagnose any issues, and advise the most appropriate treatment. If it has come on very suddenly, you can request an emergency appointment.

Getting very cold feet (or hands) is quite common in lupus. We have a blog article with some tips about managing this in relation to Raynaud’s phenomenon (which is a condition which can cause very cold hands and feet): lupusuk.org.uk/coping-with-...

I have Raynaud’s, and I personally always find it’s easier to stay warm than get warm, if that makes sense. I find my feet can be harder to get warm again than my hands, so I do my best not to let them get cold in the first place, for example by wearing thermal socks when I have to go outside in the cold, always putting my socks on first when I get changed, keeping my body generally warm with layers (though not too warm as too much heat is not good for me either!), etc. The article I linked may have some other tips you find useful, but it’s definitely worth going to see your doctor about it so that can give you specific advice or treatment.

Take care,

Debbie

[Tiggywoos in reply to Debbie_kinsey]

that’s so true about staying warm rather than trying to get warm ☺️😘

[minka in reply to Debbie_kinsey]

read the article thanks interesting . i only started with this after got some groin pain then somthing jumped out mu back to my left foot. sent home from hospital even though 2 assessors didnt want to . then my ankle went inwards and took my knee out. So I've been holding up the left leg with the right one. also gums started receding bad and im wondering if i got strep b infection because my tummy got got upset. i do a lot of walks and i cant seem to fathom this one out .;Payed private to see a rumi who said it was a spongaropothy. but to me this is not going to stop by itself as he stated at 3 1/2 months in.

[Poshcards]

Hi, sounds like Reynaud's, I have this and I am on Nifedipine everyday, it most certainly helps, also have it in my hands and nose x

[Createsomething in reply to Poshcards]

Hi Postcards I have Raynaud's in my hands and feet. I never knew you could get it in your nose! I'm stunned that it hasn't been explained to me by my Rheumy. In winter i always have a freezing cold tip of nose, even indoors and my nose also runs a lot so I'm always blowing or wiping it. After reading your post I now realise it's down to the Raynaud's disease.. Are you prescribed Nifedipine by your GP or a rheumatologist? Thanks.

[Poshcards in reply to Createsomething]

Rheumatologist originally, it's on my repeat now from GP x

[Createsomething in reply to Poshcards]

I see, thanks for letting me know x

[minka in reply to Createsomething]

No not at moment. Have no one except private Rumi I saw but ankle is giving way on me.

[Tiggywoos]

Hi Minka

It is worrying when you first see them isn’t it ! Mine go blue / black if I’m sat down then when I stand on them they go like rhubarb and custard sweets .

Do get them checked out but my dr checked my pulses and said fine

I hope yours aren’t painful and use this forum lots as it’s got brilliant of information x

[minka in reply to Tiggywoos]

ive had my pulses in feet and legs checked by machine and they say fine to . but somthing is happening do a lot of walks and now cant get 500 yards without my feet feeling like i cot rumatoid under them.

[minka in reply to Tiggywoos]

tiggy had pulses checked but they where within speck with that collar thing they put round your legs.

[Tiggywoos in reply to minka]

ah I know yes I had the same . Nurse did it

[minka in reply to Tiggywoos]

And what did they say about your mesurments

[minka in reply to Tiggywoos]

My pulses are fine to weird or what.walk go cold put them up resting ok.

[Tiggywoos]

said normal

[minka in reply to Tiggywoos]

Mine was just over diabetic ok but why is my bones killing me in my feet red hot then cold and ligaments hurting.

[Winter_night]

Definitely sounds like Raynaud's or discolouration from PoTS. My rheum initially dismissed my concerns about the colour changes - as I also have erythromelalgia which makes my feet incredibly hot, red and painful... and he wasnt convinced there were two separate things going on despite me insisting there was - but neurologist recognised the more blue/purple toned colour changes (with no heat or pain but cold instead) was related to autonomic dysfunction and referred me to Autonomics where I was diagnosed with PoTS just a few weeks ago. I'm really annoyed about the rheum's dismissal of my concern, as it goes; he also told me livedo reticularis was 'insignificant' (eye roll!) when clearly I was developing PoTS.

Good luck with getting it checked out and confirmed. I took photos which were helpful for the neurologist. Nifedipine wasnt for me but I'm doing well with managing it through changes and I know the signs and when to sit and elevate feet!

[Tiggywoos in reply to Winter_night]

blimey 😳

[Winter_night in reply to Tiggywoos]

I’m so very close to PALS and also requesting a switch. He’s left me in tears twice.. and I’ve only spoken to him twice 😩 If autoimmune bloods aren’t so expensive when done privately I’d have him sacked off already. Having said that I’ve had amazing care in Neurology and I have a good GP… can’t win them all!

[Tiggywoos in reply to Winter_night]

I’m so sorry to hear that and I do know where you’re coming from . The rheumy I saw was totally dismissive of feet which is really upsetting isn’t it when they cause so much pain . My feet sound exactly like yours and I’ve always felt the 2 not related . So glad you’ve got at least 2 good people out of 3 xx

[Winter_night in reply to Tiggywoos]

Thank you Tiggywoos - this forum has also been a huge help in coping 🙏🏻 Wishing you a good (and pain free week) x

[Winter_night in reply to Winter_night]

PS  Tiggywoos - I just read your post re erythromelalgia. What you’re describing sounds v much like my experience of it. The pain is horrendous & it can come on very rapidly. Night time is worst. The triggers are give away in themselves - for me it’s walking for too long (>10 mins), wearing shoes & socks, alcohol, spicy food and stress. I’m taking propranolol for it at the moment and it seems to be improving a little over time but that could also be me getting better at knowing what to do/not to do!! Sometimes an ice pack wrapped in a tea towel is the only thing that helps. I’ll attach a pic below for you to compare. I see NHS dermatologist every 3-6 months but he’s not got much to input and told me he’s keeping me on his books as I’m his only patient with it and he’s interested (another eye roll). I believe there’s a dermatologist in London who’s knowledgable … Dr Shall I think? X

[minka in reply to Winter_night]

a picture would be nice mine is really giving way and twisting my knee tingles like mad and it gets to your back to. mine are cold then at night warm up just had a walk down side of house and the thing is tingling like mad. all this of a bit of groin pain then somthing jumped out me back . used to do 3 mile walks ever other day. now the other leg ankle and knee is playing up. thanks for reply

[Winter_night in reply to minka]

Hi Minka. I couldn’t work out how to post a photo last night via my mobile but I’ll try again now on my desktop 👍🏻 I started off with a tingling and numb/cold feeling on one side, then both sides, then spread to hands, then felt more and more like pain over time… then redness… then full blown erythromelalgia. Took about 18 months for it to fully show itself. What you’re describing sounds very familiar to me!

[minka in reply to Winter_night]

mine been here for 4 months i sort of had this and got rid of it when i had my microfractured knee done to me 6 months that did . and I'm wondering has the knee been going going gone or is it coming from my back. look up microfracture knee info utube. supposed to last 2 to 5 years and i hve done 6years. I'm wondering if its been going going going gone and i never noticed it like i said all started with groin pain well not really pain discomfort. now I'm sort of walking off that leg i don't know about your walking. but you do compensate to the better leg. ive also been having night sweets again bed wet through with it. i hate taht one.

[minka in reply to Winter_night]

mines every day when i get up bottom of feet at night roll them on a coke tin cooled in fridge

[Winter_night in reply to minka]

Here you go minka . I dont have a picture of the PoTs related pooling in my feet - where they turn blue/purple - but I'll take a snap next time!

Foot during EM flare up and foot normal colour.

[minka in reply to Winter_night]

I have ankle problems with it giving way

[minka]

Ok here we go get some apple cider vinegar. Put in bowl big enough for you feet. Pour 3 cups of like warm water in it a half a small cup apple cider vinegar. Slack for 15 mins. Dry off well between feet.