I'm just wondering if many of you experience muscle aches/muscle fatigue with PBC? If so, what helps (if anything?!)
I'm aching all over today, like I've spent hours in the gym yesterday (I haven't!) and my muscles feel quite weak.
Aching muscles/muscle fatigue is my main symptom (although I am wondering if it's a symptom of something else). I've experienced it for years, but it seems to be getting worse lately (I was diagnosed with PBC in 2018, but I've had all my symptoms for much much longer - easily 20 years).
When I have days when my muscles aren't aching, there's still some weakness. I can't do simple everyday things that easily, such as changing bedding/lifting a duvet. Walking up flights of stairs causes my leg muscles to ache, but I don't think it's a case of being unfit as I don't get out of breath, and walking upstairs is something I do several times a day every day!
I try not to let it get me down and I do accept it is what it is, but it would be nice to have some relief from the aching, so any tips?!
I'm debating whether to join a gym and do some weight training......good idea, or..?! I know it won't get rid of my symptoms, but would building strength actually be possible?!
Thanks in advance!
Written by
Rachie34
To view profiles and participate in discussions please or .
For me, food intolerances cause body aches/muscle aches (as well as poor sleep, irritability, dull headaches with burning eyes, fatigue and other symptoms). I usually get delayed reactions—I get symptoms the day after I eat something that I'm intolerant to, so it's been hard to sort it all out. These are not true food allergies since they're delayed reactions and allergists are of no help here. I keep a detailed food journal and that has helped immensely. After many years I have finally figured out a baseline diet of foods that I don't react to, and I feel better than I have in 30 years. Read up on the Autoimmune Paleo Diet for ideas on which foods might cause inflammation (which could cause all your symptoms). It takes time and effort but is completely worth it if it helps you. Inflammation drives disease, so if you can lower your body's inflammation through diet, it may help slow disease progression (my personal opinion, and I'm not a doctor).
I'm reading a lot about food intolerance and have requested a test for food intolerance - just waiting for my doctor to get back to me. I'm finding it almost impossible to lose weight too, despite trying so many different diets, so I am wondering if food intolerance is the culprit there, as well as causing my other symptoms.
Just know that food intolerance testing is often not accurate. Food allergy testing is accurate, but that is different in that if you have a true allergy your symptoms will be immediate--like mouth or throat swelling, anaphylaxis, hives, etc. The other testing that is accurate (as long as you're still eating gluten) would be for celiac disease. But for food intolerances, the testing is not always accurate. The easiest way to determine whether you react to a food (intolerance) is to remove it from your diet for a while, track symptoms, and then reintroduce it to your diet and see if your symptoms worsen again. The links that I posted a few days ago should have details on how to proceed to a baseline, anti-inflammatory diet, and detailed lists on which foods to avoid and which ones to eat. Then, if your symptoms improve on the anti-inflammatory diet, there are detailed suggestions on what foods to reintroduce and in which order. Keeping a food diary is by far the best way to figure everything out. Each day, you can jot down notes about all your symptoms (time of day, severity, etc.), as well as notes about all the food you eat during the day (if multi-ingredient foods, then note the ingredients--for example don't say "stir fry", say "sautéed chicken, celery, onion, carrot, broccoli, coconut aminos"). The reason for keeping all the fine details is that two months from now, your basic stir fry may have changed ingredients because maybe by then you have recognized that you react to carrots and no longer eat them. For me, I used to think that I'd remember these details, but the reality is that I don't, and it's much more useful to take the extra few seconds to jot all the details than to wonder down the road when I quit eating such and such. The fine details will help you connect the dots much more quickly. If you take supplements, you can also keep notes about those using the same protocol. This is time consuming, but well worth your efforts. Sorry for the long explanation! This has made all the difference in the world for me, and I'm sort of passionate about how diet can help remove the layers of inflammation from those of us with autoimmune diseases.
I agree with the food intolerances. I developed gluten intolerance, a milk protein allergy and I can no longer tolerate red meat. Strawberries start closing up my throat. Last Saturday I ate pineapple. A fresh cut pineapple I cut myself and my mouth bled. My cheeks bled, my tongue bled… what in the world… so I tried a “tropical fruit” yogurt later in the week, and the inside in my mouth developed white sores almost immediately. I’m over it. What will be next? Allergic to water?!?
Be careful what you eat…. I think your liver controls more than people realize.
I’m down to my protein shakes, fruit and vegetables mainly…. But when I’m eating that way my body feels better!
I would also suggest yoga. I was doing both yoga and Tai chi every day but have slacked off due to illness this summer. I get my step in and do exercise. I have a full home gym and it’s kind of hit of miss. When I’m feeling better I do more and that makes me feel even better… when I’m feeling poorly, laying in bed a lot, I do even more laying in bed and feeling worse.
Sorry for the novel here, but… watch your stress level. I’m mentally better and I’m physically better with less stress.
I get what you say about stress - I don't get stressed out often, but when I do - my symptoms really flare up.
As well as looking into exercise, I'm starting to really look closely at my food and have requested a test to check for food intolerance - I've got other issues as well, such as difficulty losing weight, no matter what diet I try, it doesn't come off. My doctor said it's because PBC messes with our metabolism, and it can really slow it down, making weight loss almost impossible.
Hi Rachel I would recommend that you buy Professor David Jones definitive guide to PBC which is available on Amazon. He describes exactly your type of fatigue in the book. I also suffer from fatigue but mainly seems to be in my brain rather than my muscles and he describes this too! I have to force myself to get out and exercise because my brain feels shattered rather than my muscles. Then I go through spells where I sleep well and feel pretty ok. The main thing I would say is yes yes keep exercising and lift those weights. I’m running a half marathon in October and I go to the gym three or four times a week. Again Prof Jones and the foundation are great advocates of ‘movement is medicine’ and it can be geared to the individual. My feeling is that exercise boosts mental well being which in turn makes us feel more positive in general. Maybe book a one to one session at the gym to tailor a regime that works for you? And people keep telling me to do some yoga which might be helpful!
You sound a very positive person which is half the battle!
A half marathon sounds brilliant, well done you! I'm looking into gym membership, if it just makes me fitter and stronger, that can only be a good thing.
I have wondered about yoga funnily enough, relaxation exercises does make sense!
Thankyou Rachie34 - it’s a bit of a struggle on tired/ achy joint days! The other thing I meant to say is that I started swimming in the sea with friends during the pandemic. I hasten to add that I’m a rubbish swimmer but I do think the cold water boosts my mood and relieves the aches. I woke up with an achy Achilles this morning so I’m going for a dip later and I’m still thinking that I need to start that yoga!
It would be so much easier to deal with all of this if symptoms were the same for everyone but we are all so different. I am definitely going through a lot of the same issues that you describe with regard to fatigue and soreness that does not seem to be in line with the exercise I do, primarily walking. Some days, it really is hard to keep motivated to move. But I do. And it gets better. I try to just power through most of the time. And then every once in a while, I just give in and lay down. I also highly recommend Dr.Jones' book. It explained a lot of symptoms I found confusing.
I completely agree re symptoms - if we were all the same it would be so much easier, especially for the doctors to understand what we're dealing with. I do feel it's hit and miss which doctor you see because they see so many different PBC patients and we're all different, so some are more clued up on specific symptoms than others.
I go through this too, sometimes muscle pain will even wake me up. Also joint and bone pain.
Echo what other have said. First get ahold of your diet. I am on the low FODMAP diet right now to try and get some IBS symptoms resolved under supervision of my GI doc. One of the things is to cut out gluten. Found that my nasal congestion and heartburn disappeared. Have also found other things that seem to make me feel overall unwell. It’s not a long term diet but it does help figure out food sensitivities which I think is related to inflammation status. There is a lot of research going on now related to the gut micro biome and how it impacts inflammatory diseases.
I swim. I find swimming itself really helps me, better than any other exercise. Also I have found during my bad flares of PBC related symptoms cool water helps. Wish I had a place to take an ice bath some days! Heat and hot water seem to be bad triggers for me.
Third, I strongly agree about getting Professor Jones’ book. You can get it through Amazon. I got a digital version where I can highlight and add notes. Finds it helps especially when going to my hep doctor.
Finally maybe ensure you have a rheumatologist and get all those tests too. I saw one but he wasn’t very good, so seeking another. Most of the tests were negative which is a good thing but still worth checking. When I find a new one will double check everything.
I"ve started wondering if gluten is an issue for me funnily enough. I've requested being tested for food intolerance so just waiting for my doctor to get back to me.
Thanks for the heads up re Professor Jones' book - I've ordered it!
If you are celiac you can be tested, if you are gluten sensitive the best way to test for that is an elimination diet for a certain period of time and then reintroducing that food. I did the low FODMAP at the specific direction of my GI doc with specific instructions and am reintroducing foods now. Found to be gluten sensitive, sensitive to mannitol foods and have some more categories to test for. But overall feel like my gut is so much better. I think we will hear more research results in the future than there are now about the gut micro biome and AI diseases.
it’s interesting that no one mentions menopause or perimenopause. I’m not sure your age, but the majority of women diagnosed with this disease are of peri/menopausal age. A common symptom of menopause is muscle and joint pain due to fluctuations in hormones.
Yes, food intolerance can cause those symptoms but without testing why play a guessing game and assume? You can get skin test and/or blood work to diagnose any food intolerance.
Once I began HRT my joint pain went away rather quickly (as did a host of other symptoms). I realize HRT isn’t for everyone but it is worth having your hormones checked. Low estrogen plays a huge role in many diseases and symptoms—even low testosterone.
I have wondered if symptoms get worse with menopause or perimenopause. I don't think it's the case with me though - I'm 39, was diagnosed at 34, and I've had these muscle symptoms years before I was diagnosed. Very useful information there though, thanks!
I have found two things that help my joint pain and aching - exercise -definitely weights - and meditation. And it sounds so easy to just put that out there, but believe me I know how hard it is.
Exercise is HARD especially when you hurt already but lifting weights with some cardio and followed by the sauna has helped my pain so much. I wish it wasn't so.
Meditation has been a life saver with all of PBC - the mental, the emotional and the physical. Honestly it is hard to do also and needs to be consistent to really gain the benefits. I took an 8 week course 5 years ago and it has really helped me.
Good luck to you. The symptoms PBC cause are difficult to figure out and then to try and have good quality of life.
Thanks for your reply. I'm looking into joining the gym, I do feel exercise is my only option left to try! Meditation sounds interesting, I'll certainly look into that.
I suffer too, plus joint and bone pains. It comes and goes, I try my best to keep doing what I have to Do, but I am very carful and know my limits. If I ignore them Ill find myself on the floor not able to move for minutes. So some days are more relaxed and some days I can walk for miles climb 90 stairs to my home like normal people, and some days even hanging the washing is just too much. Im only 41, been like that for at least five years...
I get days like that too. I can be really active and get lots of things done and other days, I'm just flat out on the sofa! It is frustrating, I"m a similar age to you - I'm 39. Was diagnosed at 34 but been symptomatic for several years before that.
Did your doctor check your vitamin d levels? If they are too low, it can cause muscle and bone aches. Additionally if you are on a statin, some people experience muscle aches as a side effect. Perhaps you can discuss with your doctor and ask for his/her recommendations.
Hi, I discussed this with my doctor last week and he did a blood test to check my vitamin D levels, I'm waiting on the results. My doctor did say that my muscle fatigue is a symptom of PBC and I just need to find a way to live with it (!) But he has checked my vitamin B12, vitamin D and folic acid as well just to make sure it's not something else. I've had this symptom for years though, long before I was diagnosed with PBC, so I"m not not expecting much to change. I'm not on statin or any other medication apart from Urso and iron supplements.
what is your vitamin B12 levels and vitamin D these vitamins are water soluble and our livers don’t absorb the vitamins. vitamin B deficiency cause’s muscle weakness.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pbc and muscle twitching
Fatigue
Fatigue 
PBC fatigue and nutrition
Fatigue, lethargy? 
