Freezing cold feet and legs

[frangemini]

Hi, Has anyone suffered with absolutely freezing cold feet and legs. I have had this for about three months now and it is getting worse. I have GCA and have had ITP and am on 25mg Preds at the moment. I am utterly worn out by this as it happens all day and all night. I have been told I should keep moving but I am still having sleep disturbance and so am so tired all the time. I have to wear thick socks all the time and sit in front of the fan heater to get some warmth back into my feet and legs. If anyone else has had this please let me know and share how you deal with it. Thank you

[PMRpro Ambassador]

Have you asked your doctor? He should check the pulses at your ankles to see if your blood supply to the legs is OK and preferably also take a blood pressure reading from your arms and from your ankle and calculate what is called an ankle-brachial index. That will tell him if the blood flow at your ankle is similar to that in your arm - which it should be. If it is reduced you can have cold feet and legs.

Just a thought - do you have pain at night too? If so, is it helped by hanging your leg out of the bed?

[trish29 in reply to PMRpro]

Hello Pmrpro thank you for this information .. I have been mentioning to my GPs and my Rheumatologist for ages about the ice - cold water feeling and I've never been offered any tests on my ankles .. I felt this week because I have been going to and fro with this Flare- virus that the word PMR was unmentionable But he did mention about Myofascial Syndrome which I found out about through you and others on the Forum.. I do hang my feet out of the bed at night and just sometimes put a light fleecy blanket over them . thanks trish29

[frangemini]

Hi PMRpro - thanks for your quick reply. I have had the blood pressure readings taken at my legs but not in conjunction with my arms ? I was told that the pressure was fine !!

I do have the same problem at night - and have tried putting my foot outside of the cover but my legs become freezing cold very quickly and I have to bring them back in and on to a hot water bottle to try to get some life back in them.

[trish29]

Hello Frangimini ..Yes I have suffered with cold feet and legs for a long time now ,a good year or more and I also have the feeling that someone is pouring ice- cold water down my legs. I have mentioned this to my Rheumatologist and he made a note of it .. It comes and goes but my feet are cold most of the time. I was told by my GP that medication could be causing it particularly the Blood Pressure tablets that I am on which also cause swollen Ankles. Isn't it dreadful to be so tired and worn out all the time ? Best wishes trish29

[frangemini in reply to trish29]

Hello trish29 - thank you so much for replying - you are the first person that I have discovered that is also suffering with this - isn't it miserable. I've had ITP from October last year and recently GCA in February this year. I was taking Ramipril for my blood pressure - what are you taking? With very best wishes Frangemini

[trish29 in reply to frangemini]

Hi Frangimini. I used to be on Ramipril but It didn't suit me . I have been on Propranolol 80 mg morning and night plus at the moment I am on 15 mg prednisolone. I saw my GP this week and he has kept me on it because it stops the migraines .. I am just struggling to get over a flare/ virus and waiting on Pain Clinic as well .. Life's Great . all the Best trish 29

[frangemini in reply to trish29]

Oh Dear trish 29 - I feel for you struggling to get over a flare / virus and waiting on Pain Clinic as well. I had been on Propanalol as well as the Ramipril but came off the Propanalol (with Dr's consent) as they seemed to make my cold feet worse!! However the coldness is getting worse and so I am considering asking to come off the Ramipril as well ---watch this space! Kindest regards Frangemini

[PMRpro Ambassador in reply to frangemini]

There are so many things that are similar and make it difficult to tell causes and effects. Vasculitis itself causes the blood vessels to narrow so that the blood flow is reduced so you get cold feet and swollen ankles - so it could be the BP meds or it could be the vasculitis or it could be something else!

I get very suspicious I'm afraid, very sceptical person me! I was put on BP medication last year, I had swollen ankles afterwards. You might assume it was them, or the PMR or the pred. I saw a private physiotherapist about something else and he suggested trying manual lymph drainage to see if it did anything. He just did the worse leg first - by the time I got home I could see a difference and within a week BOTH ankles were noticeably less swollen! After a few weeks they were fine and it hasn't recurred - and I haven't changed the medication except the pred dose is a bit lower. Having normal feet is such a gift - except my shoes are too big now! I'd had to get wider ones when the PMR was bad.

[frangemini in reply to PMRpro]

Dear PMRpro I really apprecaite your reply as it confirms one of my thoughts about the vasculitis itself causing the coldness. I had not had this explained to me before so was searching for answers in all that I was taking but now realise that it may not be anything that I am taking - but the inflammation itself. I have not been diagnosed with PMR just GCA so am assuming that the vasculitis is affecting all of my blood vessels in the same way. I wish you well and thank you for the explanation. Kind regards Frangemini

[PMRpro Ambassador in reply to frangemini]

It is all very convoluted I know - but it does surprise me that consultants don't explain what can happen better. I know they don't have much time - but they should have specialist nurses or handouts or some way of providing education for the patients. After all, most of them have no medical background do they?

I don't know whether there is a longterm effect that can cause other problems - there is in one form of this but it is one that only smokers get - or if there is any way of making it less uncomfortable other than warm socks/boots and so on. I assume the advice given to Reynauds disease patients would apply to you - google that.

Is the feeling in your feet OK? If the blood supply to the feet is damaged the nerves can suffer too - like happens in diabetes. And when you can't feel properly you might need proper foot care to make sure you haven't got damage like blisters or ingrowing toenails that you can't feel and which may not heal well.

However - I'm not sure that this is simply GCA, it seems to me this may be another form of vasculitis since GCA affects large and medium sized arteries, mainly in the upper body and the effects you describe are more likely to be due to narrowing of smaller vessels. Were they sure it was ITP? Has that gone away? Some forms of thrombocytopenic purpura can be associated with a vasculitis. It would be worth quizzing your doctor.

In fact - it would be worth looking at the vasculitis forum here on HealthUnlocked.

[frangemini in reply to PMRpro]

PMRpro Once again I am grateful for this reply as I do feel very much 'in the dark' in relation to what has been happening to me. I am sure that many others have been on this journey and have had the same experience but each of us has our own agenda. I had the diagnosis of GCA confirmed on 24th February but my next appointment with the Consultant is not until 27th August - which does illustrate how busy they are. However since then I have tried to get another appointment earlier to answer the many questions that I have but to no avail. I have made an appointment with my GP in the hope that he might be able to help.

I have to say your idea that it might not have been ITP to start with was quite an eye opener - it had never occurred to me to question that. I presented with a platelet count of 3 on admission to hospital in October last year and on high doses of prednisolone to begin with tapering down to 5 mg by mid January when the GCA was diagnosed. What other form of vasculitis could it be - I have looked at the Vasculitis forum and their web site as you suggested and there are so many possibilities????

[PMRpro Ambassador in reply to frangemini]

Are your questions about GCA? There is a lot of information on this site: pmr-gca-northeast.org.uk

and there is no reason why you can't ask here - a couple of the contributors on this page alone have had GCA themselves and know an awful lot! I just know the theory mercifully! I doubt your GP will able to help a lot - many GPs have never seen a case and those who have will have only met one or two in their career.

It was just a thought about the ITP - it is a possibility. However - sambucca had cold feet too so it isn't uncommon. On the other hand, polkadotcom had the other problem - cosy tootsies!

[frangemini in reply to PMRpro]

Hello PMRpro - I have looked at the main PMRGACuk web site and will look at the other one yu suggest - thankyou.

I have had comments from both Sambucca and Polkadotcom for which I am vey grateful. I do have a question for you though - if you can offer any advice. I have the strangest situation , when I sit down anywhere - within minutes my legs start to go cold from the thighs down as though the blood supply is being 'cut off' at the point behind my torso where my thighs are compressed on the seat (hope you get my meaning) This leads to many times having to stand up and walk about in order to get the blood flowing back into my legs. In fact as I am at the compuer I am having to stand up as my legs have gone from warm to freezing in a matter of minutes? ???? Any ideasw will be gratefully received. Frangemini

[PMRpro Ambassador in reply to frangemini]

That sort of fits with what I said before - it could be that when you sit the blood supply is being restricted even further. When you are standing nothing is pressing on the blood vessels but when you sit inflamed vessels are squashed enough to reduce the blood flow enough to make your legs go cold. Do you get claudication pain? That is pain after walking a distance that goes away when you stop?

[frangemini in reply to PMRpro]

Hi PMRpro Thanks again - sorry you had to repeat that but it really does explain why it is happening - I do not get claudication pain but must admit to not walking any great distances - 1 hour to go round the supermarket with a trolley is about my limit and that is not energetic walking. Frangemini

[polkadotcom]

Thank you for the suggestion, Concerned.

[frangemini in reply to polkadotcom]

Hear Hear - Hope you get the right answers Polkadotcom

[jinasc]

I had GCA (for five years) and also the cold legs and feet. Both my GP, Consultant and Podiatrist regularly checked the pulse in the foot. It was always OK. However I did have the check recommended in the BSR Guidelines on the Aorta and Pulmonary artery, it was fine. My feet and legs are still cold although I have been off pred for over 18 months now.

I found sleeping in a 'Duvet Sandwich' helped a lot and angora bed socks.

[frangemini in reply to jinasc]

Hi Sambucca - my goodness 5 years is a long time to have been suffering with cold feet and legs, I thought 3 months was bad enough - What do I know !!!! how so many are suffering, it really makes for a whole change in lifestyle doesn't it. I have asked my GP if I could have the Aorta check and he was reluctant to arrange it saying he would like to have a 'prod' first - not Dr's usual speak but what he said nevertheless. This is planned for next Friday just hope that it is the right thing to be doing? When you say you are off the preds now for 18 months I am impressed - does this mean that you no longer have all the other side effects, that would be wonderful.

Thank you so much for your input I really do apprecaite the advice and knowledge that I am gathering from everyone concerned. Frangemini

[frangemini]

Dear Concerned - thankyou for this information. I will see if I can have my insulin levels checked if that is the way to find out and then check that I am not overdoing my fructose, and high glycaemic intake and that I am following your other guidlines.

[jinasc]

frangemini

It is worth reading, particularly Ragnar's story, on 'Our Stories' on the website that PRMpro recommended. I must however say that everyone's journey is different and I was GCA only.

On the other forum, (pmrandgca.forumup.co.uk) there are PMR & GCA people. Some of whom are in 'remission' (wish I could think of a better word) and some who are on second time around for PMR (no second time around for GCA as yet). It is a very different forum from this one but well worth a look, especially for the thread on the index, titled Eileen's input and Medication and Treatment, the only thing is, we tend to go off-piste, but its fun.

I only wish that six years ago when the only site was Patients Experience (which I still visit) was around, that both the other forum and this one had existed.

Mind I have learned a lot in the six years and progress has been made. My journey might have been different if I had known then what I know now.

On the question of side effects, yes the ones I suffered from have gone, but most of them disappeared as I came down the pred dose. As I was 5 years older when I came off pred, I have no way of knowing what I would have been like if GCA had not come along.

Hope this makes sense.

[frangemini in reply to jinasc]

Hello Sambucca - you really have given me a lot of scope to learn more - thanks - just wish that you hadn't had to have the long journey you have in order to be so informed. Glad that you have made progress though and those side effects have gone. I shall look at those websites perhaps tomorrow - not having a good day today - neither is my computer !! Frangemini

[PMRpro Ambassador in reply to frangemini]

If you go to have a look at the other pmrandgca forum it might not be just your computer! It has been very slow at times again - they are doing work on it every so often - and you may get funny pages appearing. Just be patient and try again. It's worth it - because you'll get a laugh as well as info.

[frangemini in reply to PMRpro]

Whew and I thought it was me.... well it still could be. I did try to look at it and when I put in the item I wanted to search for it told me I had been banned from using the site !!!! and that was the first time I had even tried. Mind you I had not 'joined' as such thinking that I could access the information without doing so initially so that's why it still could be me DUH- I'll try again tomorrow Frangemini

[PMRpro Ambassador in reply to frangemini]

If you try to load something too often because it didn't seem to be responding it assumes it is spamming and blocks you. I find it's worse in the mornings for some reason.

[frangemini in reply to PMRpro]

Thanks for letting me know

[frangemini]

Thank you - I hope that this will be the case with my GP.

[Tobytomtom]

Hi

Just started with freezing feet. Down from 60mg to 20 since diagnosed December. Alway s had frozen head though.

Did you have biopsy as seems people that did suffer this. Was told it might be damaged nerve endings but not had confirmed by doctor....but then again they wouldn't would they

[ejvb]

having same problem but all skin. can not lay on bed so cold. my home is at 78 and still so cold. I found the fuzzy throw blanks help a lot. I have to also wear warm socks. I put two layers under me where ever I set or in bed. Bed is so cold. have layers under you and on you. All my skin has to be covered. so important to layers and cover skin with layers if needed. If I don't then the pain gets out of control. I use two throws to just wrap my feet.