Heavy legs, light headed

[Nellies47]

Hi.

Does anyone experience heavy lower legs, with cold almost numb feeling . It occurs usually in evening and light headedness.

Joint and muscle pain(wrists, ankles hands and feet and back of my neck) persists also.

Thank you

[SUE42SUSAN]

Hi, Yes I have the same especially my lower legs and elbow joints, keeps me awake at night. I usually get up and march around a bit to get the blood flowing, does the trick for a while. But once I've been moving through out the day it's much better.

[Antwerp in reply to SUE42SUSAN]

I often get hives that comes in periods. But always on my legs and elbows and starts centered around my joints and spreads out. Happens mainly at night. It's not the same, but the location is identical.

[Nellies47 in reply to Antwerp]

Thanks for your reply

[Nellies47 in reply to SUE42SUSAN]

Thanks for that, I have restless legs syndrome too but this feels different. Take care

[butterflyEi]

Yes to your first sentence, worth getting your bloods checkd out as my complaint turned out to be something different from PBC.

The joint and muscle pain for me seems to be more associated with the PBC though.

[Nellies47 in reply to butterflyEi]

Hi Thank you. Waiting on more blood results.

[Nellies47 in reply to butterflyEi]

Do you take anything for you joint and mucle pains.

[butterflyEi in reply to Nellies47]

I try to avoid anymore tablets Nellies47 , I take so many already.

I have a very old VisiQ hand held heat/vibrating devise which I use on my legs and back and I have just ordered a hand massager for my husband which I will also use. amazon.co.uk/gp/product/B07...

[Nellies47 in reply to butterflyEi]

Ah that sounds good. I don't mean to pry but what bloods should I have done do you think re cold numb legs

[butterflyEi in reply to Nellies47]

Not prying at all Nellies47 I did not mention it because it could be one of a couple of things. For me it was first diagnosed as peripheral neuropathy then later it proved to be pernicious anaemia which is a B12 deficiency where my body cannot make the intrinsic factor. (not that I know exactly what that means!).

My B12 had been very low and had gone on for quite some time so I have never lost the feeling that I have just come in from a very cold day and my extremities are coming round if you get my drift. B12 deficiency can also happen if vegetarian or vegan but in my experience most whose diet preferences are in that direction have good knowledge of what vitamins they need.

I would caution though that it is best not to tell the doctor what they should be looking for as in my surgery, and one doctor in particular, suggestions are followed by a good verbal slap down.

[Nellies47 in reply to butterflyEi]

Hi.Thanks I know what you mean re Dr's. My b12 ok 6 maths ok.

I have been investigated in past for M.S , had this feeling in my legs last year and fatigue mucle weakness abnormal leg reflex and hx of optic neuritis in 2018 so the M.S route was throughly investigate then and resulted in inconclusive to m.s. I spoke to my gp last week and she still feels I have undiagnosed M.S.........

So I was just wondering if the legs were connected to pbc, it would be easier to think it's all the one thing.

Thanks for your reply.

Nelly

[butterflyEi]

Hi again Nelly,

Just as a thought if you are able to join the PBC Foundation's "facebook live" on a Thursday afternoon at 2p.m. you can have your question asked of the Professor on line. This week it is Professor Neuburger. Your questions can be emailed in to the Foundation in advance. I am assuming you are a member if not it is free to join.

[Nellies47 in reply to butterflyEi]

Hi.Thanks yes I'm a member.

[gillrich in reply to Nellies47]

Pleased to hear you are a member of the pbc foundation I am too the best place to get acurate up to date advice take care

[Tcmb50]

Hi, I have a high titre of Ama's but normal liver function tests. I am being monitered. My brother is diagnosed and takes Urso. I experience the heavy legs and cold numb feeling. My doctor checked me and said it suggests peripheral neuropathy but that there is no evidence at all that I have this. Nonetheless I have this symptom regularly. I used to think a cold draft was blowing on my leg it was so pronounced. I also have problems with my wrists and hands. I am convinced these are early PBC symptoms.

[Tcmb50 in reply to Tcmb50]

' monitored'

[Nellies47 in reply to Tcmb50]

Hi thank you.I think it's pbc too

[Tcmb50]

In the absence of another explanation, I think it's due to PBC. If you find out it could be caused by something else , let me know. 🙂 Take care.

[Nellies47 in reply to Tcmb50]

No problem

[Stub007]

I haven’t had those. I would definitely consult my medical care professional. Good luck!

Don

[LorraineLouise]

I have the same. I was diagnosed with PBC back in 2016. My feet and toes are especially affected by drafts and cold. I do also have wrist, joint and especially elbow pain. All part of the PBC I’m told by my DR. I’m sorry you are having these issues too.

[Nellies47 in reply to LorraineLouise]

Thank you Lorraine louise

[Turquoise2075]

Hi, I don't get that in my legs but I do get heaviness in my arms, like it is an effort to lift them up and they do feel numb. It comes and goes but I haven't been able to identify a pattern with it in regards to time of day. I was only diagnosed with PBC last November but have had these feelings in my arms for about 3 or 4 years now. I have read of others with PBC getting feelings of heaviness and numbness in their limbs.

[Nellies47 in reply to Turquoise2075]

Hi.Thanks. I'm having a lot of pins and needles and numbness and heaviness in lower arms and hands and feet.

Saw neurologist and she feels I prob have a connective tissue disorder as well as pbc.

Hope you're doing OK.

I'm struggling at moment, hope tomorrow better🙏

[Turquoise2075 in reply to Nellies47]

Thanks Nellies47. Hope you are having a better day today. I'm doing ok and it helps that the symptoms come and go but are not there all the time. Take care x