Fatigue and joint pain

[JennyCville]

Hi friends.... Just reaching out because I am having major joint pain...beginning last night, literally every joint hurts, even the bottom of my feet.  It hurts to walk...even my elbows ache. Hate to be a complainer....I don't have a fibro diagnosis, but do have an  immune deficiency. Wondering if this rings a bell with any of you. 

[Lekkerbek]

Hi jenny, So sorry to hear about your pain, but I do understand it. I have good and bad days, even my big toe sometimes pain extremely! I have told drs about it, but havent received anything for it. Hope you get some answers. 

[butterflyEi]

Hi JennyCville

Is it possible for you to have your vitamin B12 level checked?  Have a look at the following article and see if it helps.  My vitamin B12 was extremely low, I have had a course of 6 loading injections (in the arm got a bit sore!) but have felt better since, I am due the booster next month.

In the meantime I find a warm hot water bottle soothing.

hope this is of some help

best wishes

[Seajeanie in reply to butterflyEi]

 I love to read the articles which you are referring. Please let me know which one it is. I also live with a lot of pain. In 2005, during a second visit to a rheumatologist, the first being in 1995, he asked me how I was managing with my Fibromyalgia. I hadn't a clue what he was talking about. He explained that he had diagnosed me with the condition in 1995. I was shocked as I'd not been told anything about it. He showed me the letter he had sent to my GP  with PBC 2013t

[Seajeanie in reply to Seajeanie]

Sorry, I hit submit before finished.  I didn't learn that I had fibromyalgia until 10 years after it had been diagnosed. My GP failed in her duties to notify me of the diagnosis of fibromyalgia. I was diagnosed with PBC in 2013. Would love to read the article to which you are referring. Thanks ever so much.

[ali-d]

Hi Jenny, I have much the same problems, I am worse if I sit for any length of time, when I get up you would think I had completely frozen up, really stiff from my hips to feet, eases off after aten minutes or so, if I am on feet for to long I ache all over by the time I need to sit down, have been told I have PBC but only shows up in my blood count, not on any medication at this point,and that has been for the last three years or so, bloods taken twice a year to check for any rise in the count, cannot explain but I definately feel worse than before, also at the same time was diagnosed with early stages of oestoarthritis, was given naproxen but never took them, due to the PBC don't think the liver would like it, strongest painkillers I take is anadin with aspirin, paracetamol, caffeine. Really don't want to start swallowing pills because anyone I see who are prescribed them are dependant on them, the side effects from them worry me more, I am nearly 50 years of age and working full time, worries me as my body is definately changing, feel awful somedays. No cure for any of these, just to manage the conditions and have regular checks.

[WendyMarie]

I have developed joint pain gradually in the last 2 years. My Gastro Dr. referred me to a Rheumatologist. A month ago,  I tested positive for an autoimmune disease, Spondyloarthritis, which  affects the joints & it's in the rhematoid arthritus family. He says PBC doesn't cause joints pains, but it's a fact that PBC patients will usually develop another auto-immune in the arthritis family. So there are many options for pain relief, but for now I take nothing, because it's not that painful, to warrant meds, yet. It's very true that, "A body IN motion, STAYS in motion." So,as long as I walk, move, & stay active,  I'm fine. When I sit  a long period or sleep, joints become stiff & achy, like the Tin Man on, "Wizard of OZ," that needed oil. LOL

[Hidden in reply to WendyMarie]

"He says PBC doesn't cause joints pains, but it's a fact that PBC patients will usually develop another auto-immune in the arthritis family." ??? 

While it isn't unusual for us to develop other autoimmune conditions, as your doctor suggested, it is not true that PBC does not cause joint pain. Joint pain is listed as a 'symptom' of PBC on quite a few medical web pages explaining PBC - see links below. It might be an idea to print out one of the PBC symptoms list so that you can show this to your doctor - I eventually had to do that before my GP and GI accepted the fact that my joint/bone/muscle pain was PBC related.

betterhealth.vic.gov.au/hea...

  pbcers.org/about-pbc/

Here is a link to an interesting research paper, well, I found it interesting, anyway.  

ncbi.nlm.nih.gov/pmc/articl...

[butterflyEi]

Hi everyone

I am very sorry, having sited a web page I forgot to post the link

health.harvard.edu/blog/vit...

It will not be a complete answer for everyone as we are all so different.  As far as I can work out my deficiency comes from stomach problems which make it difficult for me to convert B12 from my diet.  Vitamin B12 deficiency is something not uncommon apparently as we get older. 

I still get stiff as described by ali-d but I believe I am better than before the vitamin b12 injections.

As to pain killers ali-d, dianekjs has put up an interesting post with a link about painkillers being the potential environmental trigger for PBC.  This paper does not describe my environmental trigger as I was lucky to be a healthy female adult with rare need if ever for pain killers.  I believe my environmental trigger may have been the vaccine against hepatitis C when I worked in a medically aligned profession.

Again my apologies - it must have been that dreaded brain fog!

best wishes

[JennyCville]

Thank you, everyone....I am in a funk today, because I've developed another UTI/kidney infection. This requires antibiotics and pain meds...thank GOD I have a great pain management doctor, and can use Nucynta which isn't processed in the liver. My immune deficiency makes infections dangerous for me~and once I have one, it's usually months until I get better. I had been doing so well. Sigh...I am definitely going to keep moving...I have found that the pain from the NASH is much better when I stay active. It's a balance of rest and movement.