Information please

[My-life]

Im asking about strength. I was a tom girl. Now i find my strength is so much less. Pulling weeds hard. My hands are not as strong. My bones are what they said high risk fractor is this part pf PBC?

[Anne29]

I also had strong hands now they are weak . Especially so in the last year and a half (I was diagnosed with pbc a year ago). Yes our joints can get affected, and more...It's frustrating. Have you had a dexa scan yet for a check on osteoporosis? I was tested clear but still have the slowly increasing joint problems and stiffness. I am not sure why. Sorry to hear you do. I know it's disturbing. Hope you have a good GP and Gastroentologist or Heptologist. Make a note of where and when perhaps the stiffness occurs -if it varies bring this to your medical advisors. Hope others here can offer more useful advice -my note is mainly to say its a symptom, I have it, and also as a strong and practical type of person I too am disturbed that i have to deal with this!! I hear you, and do mind yourself.

[My-life in reply to Anne29]

Thank you. Yes they have me on calcium for bones. I was diagnoised 3 yrs ago. I asked about ssdi. And they said we cant get it. I have always worked with my hands and now I dont have that strength. Im 61 and wondering what a person does. Blessing thank you. Keep in touch.

[JoanCR in reply to My-life]

Hello, I suggest you don't listen to whoever said you can't get ssdi. I applied for it a couple of months ago and am waiting for a decision. Two attorneys and my doctor think I have a shot at it. I do have fibromyalgia as well plus osteoarthritis so that might help my case. I was told by two doctors that people can't get ssdi for fibromyalgia alone but I personally know someone who did. It wouldn't hurt to apply if your symptoms prevent you from working.

I was also a tomboy and have been active all of my life as well as having physically challenging jobs. My strength certainly isn't what it was. I know some of it is from not being able to do as much because of how I feel, but my arms feel weak while I'm sitting, doing nothing. That along with the fatigue and pain is very frustrating. I have a couple of horses and a mini donkey and now I dread having to go out to take care of them.

[My-life in reply to JoanCR]

My Doctor said that. Im 61 and I was a machine operator production and I cant lift like that and run around. I will check with a lawyer. I wish i was there to help so sorry. My doctor said i was stage 1. But now my joints. I dont realy care for my doctor when I was in for an endoscope I showed him a rash on my stomach. He looked and said we are not here for that. Feel the Love. Lol

[JoanCR in reply to My-life]

Aren't doctors something? Yes, feel the love. Lol. I was told I'm in the "early stage" of PBC. Thank you for you wishing you could help! I appreciate that.

As for ssdi, even if you could do a sedentary job, you could still get approved because of your age. I'm 58 so I'm in the age bracket down from you. One of the few times my age will benefit me! Social security has a chart they use if you get through the process that far that asks your age, education and what skills would transfer, and then it tells the worker whether you're considered disabled. I would be and it sounds like you would be too. They figure the older we get, the less they can expect us to learn a new trade or even be able to get a job. Disability lawyers don't get any money unless you win and then they get 25% of your back pay. I wish you good luck!

[My-life in reply to JoanCR]

Thank you. I will keep you up to date. 😄😄😄😄😄. Laughing at Doctors.

[Eyes23 in reply to My-life]

I am getting old. I buy wide legged trousers, but now these are becoming a problem, as in getting tight. For years I have been too embarrassed with my condition. Nobody knows how it is living with PBC. I shut myself away from the world and stay in my night clothes all the time! Its a sad and lonely world if you look different from the Normal human being!

[My-life in reply to Eyes23]

I went and retired early. Im in the process of finding another doctor. My sister passed away. I have not been on here much.

[Hidden in reply to My-life]

I'm sorry to read that you lost your sister. It can take a long while to come to terms with such a loss. We had them close through all our lives. They are part of us. Please be kind and take care of yourself and don't expect to be able to do all that you did before until you feel a little stronger. It isn't easy to find a new doctor that suits you better than the old one. We need one who treats us like he cares about us as a starting point. Perhaps that's the first thing we should tell them. Very best wishes.

[Hidden in reply to Eyes23]

Fluid retention that's not serious can be reduced by what we eat. Less salt, less sugar, more water. Foods that help include bananas, nuts because they contain potassium and magnesium. Fluid retention that is serious needs a visit to the doctor. It can be a kidney or heart problem. Even if it is neither of those serious problems, it's a serious problem for you because it is having a bad, and limiting effect on your life that will get worse without treatment. You need to see your doctor about fluid retention. PBC doesn't cause it and you need to know what does. You are a "normal human being" and you can start to feel like one as soon as you start to get this problem seen to. Best wishes

[pottery1]

I was only diagnosed with pbc in Dec, on urso and having further tests to see what stage im at. I had a bone density scan and i get the results in a couple of weeks. I too am a strong lass and climbed Ben Nevis in the Autumn, but have noticed my muscles weekening, especially my wrists, fingers and upper arm. I dont know if this is related to pbc but i will definately be asking my consultant about this. I also am prescribed vit D and calcium.

[My-life in reply to pottery1]

I see my doctor monday. Im going to ask him. Yes wrist upper arms.

[pottery1 in reply to My-life]

Good, please share any info you get off them and visa versa. Good luck

[My-life in reply to pottery1]

I will.

[My-life in reply to My-life]

The doctor told me PBC can affect joints. Also my bones are weaker.

[mjk98]

I have no strength anymore my bones hurt all the time some days more than others

[My-life]

So sorry. I go monday to my doctor find out what he says.

[mrspeffer]

I find it odd that the "doctors" have no clue as to what really happens to our bodies. Yes, it is very real that our hands and arms seem to weaken, as well as every other part. Mine is prominent in upper back. I find that yoga, especially Iyengar yoga keeps me upright and strong. I know this sounds odd, but using the strap in yoga, pulling on it and having the tight grip strengthens hands really fast. I've taught yoga for decades and have seen many older folks gain strength and dexterity just from the strap. Before they know it, they are back pulling those weeds!

[My-life]

Thank you I hate being weak and the dr acting like. What do you want me to say.

[Hidden]

hi have u been checked for other auto immune diseases they run hand in hand once u get one your prone to others i have psoriasis arthritis plud fibromyalgia plus pbc fibro sffects my muscles badly u get bone pain and stiffness with pbc good luck x

[My-life]

They check blood. I have a sister with non Hopkins limpoma. And one with scaderma. i was checked for ciliac didnt have. Thank you.

[butterflyEi]

Hi My-life

I am 67 this year and have been diagnosed since 2006. I am also prescribed statins which I understand can have an impact on our joints. I was always a strong person, strong back and strong hands particularly - now I cannot open a jar without help from a gadget or by asking my husband. It is very frustrating. I do not think the medical profession are interested in such things - my first visit to a GP for peripheral neuropathy was that is just bad luck! At 67 I am still an active member of the family and want to stay that way.

best wishes

[Hidden]

Hi All...I too struggle with weak and painful wrists, hands and fingers. My pains started many years ago in my late 20s (now 43 yrs) and was put down to RSI as I have always worked in secretarial roles. I was diagnosed with PBC in 2014 and my gastro put me on hydroxychloroquine which does help a bit but I'm never totally pain free.

My employer was really supportive and made adjustments to my role so I didn't have to do as much typing and provided ergonomic keyboard and mouse. However our company was taken over and the new bosses really don't care - you are definitely 'just a number' to them.

After 15 years I am being made redundant in a few weeks and worried about future work - I cannot afford not to and have 2 young children. So I am considering cortisone injections to see if they will help.