Does anyone else suffer with chronic muscle pain?

[Sonia40]

I started with muscle pain, followed by fatigue before I was diagnosed, now the itching thing, that's a whole different story, does anyone else find this symptom the worse of all? I find too that just because we look ok, I feel that people think your making the whole thing up, anyone feel this?

[Hidden]

Hello Sonia40.

Well only my close family and a few select friends know I have PBC. I haven't told other friends I have and they just presume I am a normal healthy middle-aged woman (I am 49).

Back in early 2010 when I started itching it wasn't obvious that I was suffering from fatigue badly and also I did itch a bit during the day back then (I only itch at night now). I looked ok but at times could see I was tired but that was put down to working over the allotted 37hrs working week and not having 2 days together off in over 6mths (due to my colleague going on sick leave for that term).

I can't say I actually experience much in the way of joint or muscle pain. I did get a shoulder pain during 2009 but I was in a manual job lifting at the time. Just thought because I'm right handed and tend to use that more for lifting, I had strained something. It did go away but on and off it comes back. It doesn't last more than a day or two and it doesn't actually throb with pain, can just feel on movement but it's nothing significant at all at present. I am not sure that is PBC related due to the fact I know if I have done some lifting or carrying shopping, etc the previous day it seems too coincidental that it appears following day so maybe I once did strain it.

I think GPs in particular can be a bit dismissive of PBC even though they have got the LFTs in front of them and have like in my case the diagnosis made from a consultant at the hospital who did the AMA test. I do reckon just because a GP doesn't know much about the condition and when you keep on going and just take urso and/or other meds for a connection to the PBC (ie itching meds) and the bloods are considered normal in PBC (mine are apparently deemed so) then they just seem to want you out of surgery as soon as possible. I don't think a GP would really sit up unless the LFTs were going way out of control and the patient with PBC started saying they had this and that now.

Yes I know from experience with my family they just do not seem to take it seriously at all. My daughter was a trainee veterinary nurse in a vets for several years (quit before taking her final exam) and she managed to take the PBC Foundation file I got sent which at the time I didn't want her to (I think you try to shield relatives from what this condition may become). She understands it far better than any of the others in my family. It has taken my husband almost all this time (3yrs) to actually take it more seriously. I once said seeing as one of the GP appts wasn't important to him over something else at work don't expect me to tell him how the appt got on. The terminology of 'could lead to transplant' by the hospital doctor in his presence early 2011 did hit home to him but I think due to never knowing how this is going to go, I think passing time starts to change a person's mind and they think it's going to be perfectly fine. As we know there is no way of knowing from one year to the next now but the LFTs are an 'easy marker' to start to see any significant changes.

I loathe the itching even tho' last 6 days it hasn't so bad and caused me virtually no problems at all during the night. Now itching is one thing I'd love to all the doctors and nurses I have encountered so far who just seem to think the itch is nothing much but the itch is so different from when I was normal, you rubbed or scratched the area and it ceased, this PBC itch is so different, scratching or rubbing doesn't seem to do that much for me most of the time and can guarantee if I itch one part of my body, another starts!

For your muscle aches have you tried a bit of light exercise or walking to see how that goes. I tend to do a long walk each day as although my husband has a car he takes it to work every day and he doesn't work that near home. We do a lot of spare time walking and I think that keeps the joints and muscles going somewhat. It also seems to be a distraction as I find I can no longer sit for long periods of time during the day as I tend to feel the prickles that at night time are the start of the itch so no thank you, can do without any during the day too.

[Sonia40]

Thank you periodot, most informing, I seem to manage about 2/3 hours of walking and then my legs hurt really bad, if I do what I call normal housework, eg hoovering or cleaning the bathroom my upper arms feel painful, especially when I over reach for something. I am only 40 yrs old, until this past few years I was really active, cycling, going to the gym, I worked a 37 hr week on a busy orthropaedic ward, at the moment my gp has put me on the sick because I'm unfit for work, due to the nature of the job. I've been proscribed urso and anti histamines for the itching, these do help. Stops me sticking a spoon up by back to itch. Which my children find hilarious . I'm at the liver clinic next week for ultrasound and liver screening. Really hoping i don't have to have a biopsy. I must say though at the moment i feel like everything is an effort.

[Hidden in reply to Sonia40]

Hello again Sonia40.

Have you got the diagnose of PBC then? Just wondered as I had abnormal LFTs first of all and then as the weeks went by and certain bloods came back normal, others not, the GP sent me for a scan after taking a blood test to decide whether bone or liver related. (You can have abnormal LFTs with a bone problem.) I then had a normal looking scan of liver and surrounding organs but further LFTs were showing that they were still slowly going up so the GP referred me to the hospital. Only had 12wks to wait before going to see one! Had the AMA (anti mitochondria antibodies) taken at the hospital when I finally went and then 2mths later I was informed I had PBC and started urso.

If you have a positive count for AMAs then a liver biopsy is not normally requested. I suspect you are English so if you do have the AMAs (I had test for ANAs same time, that can diagnose a different liver condition. Mine was negative for ANAs), cant see you having a biopsy. That is usually performed if there is any doubt.

My GP originally wrote out a prescription for antihistamines at the beginning and I noticed you could get it over the counter as opposed to paying script price. I only took a couple days as it seemed to make me feel worse and I started feeling very nauseous. I did find out that if you have a liver problem an antihistamine is of no real use for the itch. But I have read on this site previously that some take the antihistamine that causes drowsiness so they can sleep at night and ride over the itch.

I did improve itchwise with the itch after starting urso but it has really taken time to kick in. At the beginning of urso I thought it was being made worse and was all for quitting the urso until I had the first blood results through and they were positively thrilling so I continued. I am still sceptical about the urso but continue to take whilst the going is good.

Good Luck on going to the clinic. Jot a few questions to ask when you are there. I remember asking several questions. I did ask about dietary. Although I've always been pretty good at eating what are considered good I thought I'd ask and was informed 'the liver loves calories' and I don't actually need to change anything. (Alcohol wasn't mentioned and tho' I wasn't much of a drinker I did not have even a glass of anything from the first abnormal LFT. Don't miss because I never bothered previously.)

[Hidden in reply to Sonia40]

hi Sonia40,

yes, you are not alone, I'm just about to turn 40 and consider myself as being above average in fitness. I find my body aches and the itch and fatigue can be horrendous . I try and still keep active when I can , lucky (or unlucky at times), my partner is very active and pushes me.

if you need a biopsy don't fret too much , its different for everybody and you will be over it in no time. I had to stay over night in hospitalbut was made very comfortable.

hope all works out for you

Angeles xx

[Sonia40]

Hi peridot yes I have been diagnosed with pbc, been proscribed urso, hi angel, thank you for replying, thank you both for such kind words, xxx

[Kaywal]

Hi Sonia40. Yes I'm in accord with you! I get flares ups when I feel as if I have the flu or I've just done a round with Mike Tyson. I find exercise painful during these flares ups and even on fgood days my muscles ache more that they should (my legs ache climbing stairs!) My GP's not very interested so I've given up going. I'm AMA negative but positive for PBC on biopsy and not totally convinced the muscle problem is totally down to PBC x

[Sonia40]

Hi kaywal, i did a little research when I first got diagnosed with pbc, and discusses my muscle pain with the gastroenterologist and he explained that with pbc being an autoimmune disease this makes our body's fight it's own tissue, ie muscle, I have a very good liver clinic and a very understanding gp, I am same as you, carrying the Hoover upstaires is painful, although I have good and bad days, when it's a good day i carry on as normal but find I suffer later. Is this the case with you? Xx

[Shirleybutler]

I understand where your coming from re the fatigue my limbs won't move sometimes but getting up in the morning is worse I just don't want get out of bed good night sleep or not.Adding to that I do wake up in the night and read a book till I finally drop off then can't rise next day. dose anyone else do this ?

[JennerLayne]

Yes --- I have lots of muscle pain all over my body and there is no rhyme or reason as to when and where it shows up, how long it stays and which part of the body it effects. I have however started to notice that the limbs on the left side of my body are getting smaller in circumference, as are the muscles, yet I haven't noticed any changes in my strength from side to side. I'm not sure if it would be considered 'muscle wasting' but do plan on bringing this up with my Rhemuatologist in January.

I totally understand what you mean about support and people not seeing you as having an illness. That said, my husband of nearly 27 years and I have been meeting with a therapist for resolving a variety of family issues, and one thing came out during a recent session. I beleived he wasn't acknowledging my illness because I look fine (in fact, with my improved diet, I look the best I have in 20+ years.) After my diagnosis (and with much prodding), he did read a little about PBC and AIH and was so unnerved by the info, that he's gone into denial to mask his fears. At one of the sessions, he admitted he is worried about the progression and can't stand the thought of having me go through this or possibly losing me, so he tends to ignore any aches/pains/bad days that I mention and pushes to live a 'normal life'. The therapist has kindly encouraged him to talk to me about it --- he won't, and this counselor warned us it will take time. So, anyone going through this, we've got to be patient and realize our loved ones may be as worried about PBC as we are, but can't put it into words or express their emotions directly with us just yet. (Yeah, I know --- easy to say, but not at all easy to accept or live with when we don't feel well.)

[Alaskanbutterfly]

I was just diagnosed last year I have a positive ANA 1:320 speckled pattern and a positive ANA 1:80 but here in Alaska they chose to do a liver biopsy anyway and when that was positive they sent it to the Mayo clinic anyway for another look lol. I don't itch too bad but oy my liver hurts and my shoulder and my muscles I'm the same I feel well and go about as normal then I pay dearly for it. I have the best drs and my specialist is lovely which helps and I feel blessed but my husband is the same. I bet if you asked him what I have he couldn't tell you but he is good when I'm hurt and not well. I am 46 and an British as well just been away from England 30 years. Make me wonder how so many Brits and im not even there! Nice to hear your stories as its validating an familiar but at the same time in sorry for you all an praying for all of us.

[ZiggyBean]

I have had chronic muscle pain for 15+ years.......hot epsom salt baths, massage and heat seem to help the best.

[mags_larkhall]

My muscle pain really bad at times.i am always sooooo tired I could sleep all day if I could , itch getting worse esp at night

[florrie505 in reply to mags_larkhall]

Hi there,

I think the itching 24/7 and the chronic fatigue have got to be so delibitating and other people just can't begin to understand as we look so normal, except never have any energy. I was told to rest frequently, difficult when holding a f/t job and looking after 3 children plus 4th father (really difficult as they don't have a clue). I still get told that I sleep all the time, C'est la vie.

Look after yourself

xxx

[mjk98]

I suffer from chronic muscle pain I just went to see a rheumatologist and they want to do a sleep apnea test which I don't know how that correlates my primary doctor wants me to do it