Hi all

[SewingFan]

I was diagnosed with PBC, 2 years ago I was wondering if anyone has suffered with painful and swollen ankles. I am a very active person and have been experiencing this for a while. I am finding it very hard to get around, any answers would be very appreciated as it is really getting me down.

[Hidden]

Hi sewingfan,

Unfortunately we are prone to joint and muscle pain. I have issues in many different areas. Im taking it you are a keen sewer with your name. I have sewn now for 31 years, for work and enjoyment. My fingers and wrists stop me doing it as much now and my shoulders. Never realised how sewing affects your shoulders.

Angela x

[SewingFan in reply to Hidden]

Hi thank you for your message, yes I am a keen sewer when i have the time to do it. I like doing patchwork mostly. I get lots of aches and pains just not experienced pain so severe in my ankles. When i mentioned it to my consultant he told me our condition wouldn’t give severe pain just aching . That’s why i was interested to hear of anyone else experiencing it. X

[SunnyXXOO in reply to Hidden]

Never has Transplant, have been on the list but optioned out.

I was Dx with PBC 25 yrs again. I do have accumulated fluid because of liver being damaged but diuretics to stop that. I don’t have any pain (knocking on wood as we speak), I do have days of fatigue but my yoga classes help me tremendously.

So, for Western Medicine I take Diuretics, all the rest is Integrative medicine - Neltrexone 3mg, B12 sublingual, Alpha Lipoic Acid 600 -1200mgs, plus RSO (Cannabis Oil) at night to help me sleep, plus the oil cuts out any Pruritis (itching) immediately (consume a only a sesame size of this thick oil).

A very good friend of ours had a transplant about 8yrs ago, but recently bililary tube occluded but Docs placed a stent and off he went to Hawaii for vacation.

Sleep easy sweetie this is very common, I will put him in my prays.

Peace, Love, Gratitude and Light

Sunny✨🙏🏻

[butterflyEi]

Hi SewingFan as Hidden says it is something that many of us are prone to, I don't get the swelling too much but I have found elevating my legs above hip height helps reduce the swelling. I also read recently that there is a yoga position where you lay on your back and bring the legs right up (support underneath with a pillow) which is apparently helpful and it reminded me that an aunt used to lay on her bed in reverse and put her feet high up the wall after a long day standing which she recommended and it really does work.

As to the sewing, I am sad to say that I have a large uncompleted crossstitch project that I am no longer able to concentrate on, I still plan on finishing it though - one day!

[kandiepat]

Hi, just want to add that my liver doctor said that my Blood Pressure tablets were at fault (he was right) my gp reluctantly changed them. My ankles are back to being slim and my feet are great. Kandiepat

[SewingFan in reply to kandiepat]

Thank you for your reply.