Raynards too now

[Twinkle26]

Hi I have pbc now couple of years , I've not posted anything in a while but I've been reading other people's posts.

I've recently been back to see Gp due to my fingers and toes stinging and tingly when filling freezer after shopping or if I'm out too long. I've had to go back to wearing my ugg boots this helps the toes lol

But my fingers are still suffering and sometimes my nose lol

Well this is to say my auto immune conditions are piling up,

I have pbc, alopecia, under active thyroid, Raynards, arthritis.

On top of this the brain fog, aches and pains and I'm only 52. I feel as though every time I have to see gp there's something else, but my friends of my age are barely on any medication.

Sorry just feel bit crap.

[Mely1979]

Try searching for Raynauds gloves. My friend uses them and it helps her hands a lot also decreased the ulcers on her fingers from returning so much

[Twinkle26 in reply to Mely1979]

Thank you x

[Hidden]

you seriousley need to get checked out for fibromyalgia i have it along with other auto immunes it does ny show on bloods or xray so u need to suggest to your gp u may have thid some of gp bit ignotant to it so check out symptons on a good page the list is endless good luck x

[Twinkle26 in reply to Hidden]

Thank you I will check it out x

[butterflyEi]

Hi Twinkle26

Sorry to read about the Raynaud's I know it can be quite painful according to a friend of mine who suffered with this for years. She used to wear thermal long sleeve vests (not good if you have the so called itch of PBC) and when it was really cold she had a very smart ski suit that she could go out in and not suffer overly. She also used to wear thick soled shoes and high natural fibre socks as the ones with nylon just make you sweat.

I recently read a report that Uggs have officially been proclaimed as being bad for the feet, I have never worn them but when I see others who are walking off the sole it occurs to me that they cannot give any support or that much warmth to the foot or the body as a whole.

I think you are in the UK and can access M&S which has a good range of thermals as does Damart should you need to go down that route.

It has already been unusually cold in the UK so I guess there will be more cold weather to come.

best wishes

[AngelaBarron]

Hi Twinkle26

You sound as though you are going through a real "why me" patch! Don't worry, we all do!

I have arthritis too, and had both my hips replaced in my early fifties and various other surgeries too. I have had cold nose, fingers and toes forever and now PBC, so know where you are coming from.

I wear thermal gloves and pure wool socks in the winter, and thermal tops if it gets very cold. I also use chilblain cream on my toes which at least keep those at bay!(The chilblains not the toes). I don't have alopecia, only normal hair loss associated with low thyroid and ageing. That is pretty hard for someone as young as you.

But, you can cope with this, it doesn't get easier, but you cope, I'm in my seventies now, still the same conditions, and life has never been sweeter. Hang on in there!

[Twinkle26 in reply to AngelaBarron]

Thank you x

[GrittyReads]

I would ask for checks on your vitamin and mineral levels. PBC sufferers can have low Vit D, and that can lead to low calcium, so that bones, joints etc become affected. People on here have also spoken of B12 shortage (brain fog) and other dietary issues.

Check with the 'PBC Foundation' (links to website and contacts, above) and read their website, to get the full info and latest list of typical PBC effects/symptoms. It maybe that some of your issues are still down to PBC, and you just need a more holistic exploration and treatment of the condition.

Take care, hope this helps.

[Twinkle26 in reply to GrittyReads]

Thank you

[tonia17]

I’m with ya sista!!!! 🙄🙄🙄

[Maureen25]

I feel for you as I was feeling very low with never feeling well. With PBC which took so e time to come to terms with I now have fibromyalgia and tremors for the moment not Parkinson's it just gets you down.