Questions?

[Lisa15]

I have been reading as much as I can about PBC but still have questions. I have osteoarthritis pretty bad for few years now and have had 4 surgeries for carpal tunnel and other nerve problems but, in last year or so my osteo and nerve problems have gotten worse along with muscle pain and weakness. Can my PBC have anything to do with this? Also is memory/concentration affected? I stay so fatigued, that I wondered if that could be the cause. All information is greatly appreciated. Thanks in advance.

[PBCFoundation PBC Foundation]

Hello Lisa15,

I have sent you a direct message.

Best Wishes

PBC Foundation

[PBCRobert Partner]

Hi, Lisa.

There is a link between PBC and Rheumatoid Arthritis and/or Osteoporosis as both of these are thought to be autoimmune conditions also. As far as I am aware, I haven't heard of or seen a link between PBC and Osteoarthritis or Carpal Tunnel Syndrome.

That said, many people affected by PBC do experience muscle pain and muscle weakness. Also, there is a link between fatigue and what many patients call "brain fog". There is much research into this feature of PBC. Our understanding is limited but there seem to be 2 aspects: a physical aspect which is being investigated in the UK more and an aspect which is related to brain activity which is being looked into much more in Calgary, Canada.

In terms of managing the fatigue, please feel free to get in touch directly with us to see if we can help.

Yours,

Robert

[badpiglet]

Hi Lisa,

I'm riddled with osteoarthritis and also have carpel tunnel/nerve issues along with being pathetically weak but although I'm positive AMA M2, my consultant does not think I have PBC.

My consultant for the osteoarthritis told me, in simple layman's terms, that my arthritis is due to the type of collagen I have, aggravated by the physical things I do (or have done). It is wear & tear. Neither the type of collagen we might have or the activities we do, that have an adverse affect on our joints, are likely to be connected to PBC. Can PBC make osteoarthritis worse? Don't know but doubt it. If due to extreme tiredness, PBC sufferers move less and carry less, you'd naturally think that the wear & tear on the joints will be less.

I noticed osteoarthritis having an affect on the way I go about various activities about 25 years ago and I've become weaker & weaker as I avoid using various parts of my body. It's taken me years, far too many years for me to realise just how weak I'd let myself become. I walk a lot but I should have been exercising in a way to strengthen the muscles and I haven't. Huge mistake which I've got to try to start putting right. Have my joints got worse over the last few years? Yes, a little but now I really take steps to try to prevent any new joints from being wrecked so I'm an awful lot more careful than I used to be. I take huge amounts of glucosamine & chondroitin on a daily basis along with krill/fish oil. Tumeric I have taken but stopped as I wasn't 100% sure about side effects & the liver.

Nerve issues & carpel tunnel syndrome (& Morton's Neuromas) vary. Last year was much worse than this for me & I have no idea why. I was worried, as numbness IS worrying & my grandmother had multiple sclerosis. Maybe the gaps in many of my joints have simply decreased so in certain positions the nerves get compressed & irritated. Where my nerves have been cut out in one foot, the cut nerve endings are still very reactive if they are 'irritated' eg foot on a clutch pedal for too long. Nerves & how they behave are really peculiar, strange things. Can PBC affect them? Not sure as I have no medical background but PBC can certainly affect nutrient absorption, among other things, therefore there will be a knock-on effect to many systems in our bodies. Also many PBC sufferers also have at least one other autoimmune disease and some of these may well cause nerve issues such as numbness & tingling. I found that keeping a numbness & tingling diary helped, helped me see clearer exactly when it was better/worse, what activities or positions affected things. It also helped me be more accurate when talking to my doctor. If you can, get your vitamin & mineral levels checked, just to make sure they're OK.

I'm rambling a bit because memory & concentration ARE a problem! It's cropped up a lot on this site but equally many friends & family, who don't have PBC, also complain about it. I guess, & it is a guess, that PBC might make natural age and hormone related memory/concentration problems worse. Sage supplements (thujone free) may help with memory according to some studies. Insomnia can make memory/concentration just completely vanish down the plughole, making every waking hour a battle to function - so doing everything possible to get a full night's sleep - maybe a not-too-hot, bedtime bath to ease those hurting muscles is a good idea?