Severe Joint Pain

[GhostHunter]

Does anyone have excruciating joint pain? My GI says some joint pain comes with the territory with PBC and my RA doctor says my joints should not be hurting as bad as I claim... then why are my joints hurting so bad? I am not making this up!!!

[mek4wlk]

I also get severe joint and muscle pain. My rheumatologist has me on Gabapenttin at night and Dexilatine during the day which helps. Don't ever let a doctor tell you that you shouldn't have this pain or that pain unless they walk in your shoes they just don't know. I wish you the best

[Shulsey]

Have you had your vitamin D checked? I know when mine was super low it caused sever joint pain. Also, when we have one autoimmune illness, there are usually one or more others lurking about. I suffered extreme joint/muscle pain. I saw a rheumatologist who put me on 50,000 units vitamin D weekly which help some but didn't completely stop the pain. I even hurt from coming inside from the hot weather to a cold inside hurt my skin. I then ended Up seeing a neurologist who diagnosed me with fibromyalgia. I take 50mg Amitriptylin a hour before bed every night. This has helped me a ton. As you can see, there are a number of issues that can cause the pain.

[butterflyEi]

Hi GhostHunter

Are you able to change your RA doctor? To the best of my knowledge RA can be incredibly painful and your rheumatologist surely would know this. I also believe that stress in our lives can impact on how we feel and I believe from a previous post that you have a stressful event in your life just know.

I have copied a link to the Mayo clinic (as I believe you are in the States) I understand that the hot/cold therapy can be helpful.

I hope this is of some help to you.

best wishes

[June9961]

For four years I too was in agony with what I referred to was 'broken body syndrome'. It felt like every bone and muscle ached. Sometimes even my hair and teeth even hurt. I was also told that it shouldn't be as bad as I was saying. I was put on to very strong pain killers which barely scratched the surface. Then as soon as the pain arrived it disappeared. I don't know why. Now and again have an off day where I ache all over and feel really awful, but it passes. This condition is a real mystery at times.

[Adrygaza in reply to June9961]

I have been felling the exactly same way!!! I hope you feel better now.

[bartholomewpatri]

its what you're eating....those of us with PBC have an overactive immune system so if we eat fats sugars carbs salts, breads cereals etc these all cause inflammation throughout our bodies which we notice more so in the joints and in our feet. Try the alkaline diet it truly helps fight off inflammation.

[GhostHunter in reply to bartholomewpatri]

I have changed to a Vegan Diet but I still ache. Hopefully it will subside.

[Pbcgirl28]

I too suffer from extreme joint and body pain. Its been a daily struggle for me. My liver doc said it's not usual with autoimmune diseases . I was dx with fibromyalgia 3 years ago but this is even worse that that pain. Similar in some aspects but a lot worse. Pain killers don't hardly help anymore.

I am on a wheat free diet. My doc said to read, Wheat Belly, its a very insightful book. Being wheat free and eating fresh fruits and veggies and wholesome food has helped some but not a tone. I am only 2 weeks into this however so it may take more time.

Look into changing your diet. I'm so sorry you to suffer with this pain. I know how exhausting it is. It takes your life away.

[Hidden]

My joint and muscle pains improved significantly after getting my vitamin D levels sorted out I was severely deficient. I still have the some pain but nothing like before. If you've not been checked it may be worth getting it tested.

Rheumatology just recently rubbished my fibro diagnosis from her colleague 2 years ago and said it's a functional disorder... so not any further forward with my quest, my GI insists it's not related to my PBC... I feel otherwise and recently gave the consultant some leaflets from the pbc foundation but not sure what she made of them. She never commented.

[Biddyb]

This is interesting reading I have had a lot of aches in my hip joints and ankles it started off as real pain and someone told me to try honey/Apple Cider vinegar and Molasses daily to break down the lactic acid in joints which I assume has reduced the pain to an ache. I do pelvic thrusts and a fee Pilates moves to oil the joints which helps. Will look into vitamin D levels again. I was taking Adcal but came off it as my calcium was too high and my GP was looking at the possibility of hyper parathyroid which also has many of the same symptoms as PBC it's a mine field the more blood work you have and the older you get the more confusing it becomes.

[Kaywal]

hi there. Yes I have the same problem with both the pain and getting it recognised as a symptom of PBC. I have researched and diagnosed myself as having CPPD which is acid crystal deposits in joint tendons. Google it to see if it fits your symptoms as I've found that a change in diet (no wine or gluten) plus an increase of 250mg of urso a day has helped enormously (seriously thought I would end up in wheelchair a few years ago). Hope this helps x

[GhostHunter]

I changed my diet a few months ago to Vegan at the recommendation of one of my doctors... NO Gluten... NO Dairy... NO Animal Fat... which I stick to religiously. Supplement my diet with plant protein and vitamins, but I still have severe joint pain.

[GrittyReads]

I agree that having Vit D levels checked is crucial - and supplements prescribed if necessary. In particular, a drop in Vit D is common with PBC. Also ask for a calcium check and bone density, osteoporosis, etc checks. Fibromyalgia also occurs, often, with PBC and I agree that amitryptiline can help ease this: even tiny doses of 1/4 of a 10mg tablet.

However, do not let medics dismiss you by saying that joint pain is not a symptom of PBC. In a recent edition of the 'Bear Facts'* magazine, it was listed as one of the most common symptoms, up there with itching and fatigue.

NB This* is the magazine of the 'PBC Foundation' who host this site: see the link at top of page to access their website, with phone and email contact details if you want to talk to their trained advisors. They are all lovely and the site has loads of info on PBC. If you join - it's free - you can see the magazine and take a copy along to your Dr. The most recent edition also contains a summary of the recent revised 'official' details for diagnosis of PBC.

I'm thinking of making copies and delivering them to all my local GP Practices.

Hope this helps, take care.

[Cstar1079 in reply to GrittyReads]

I have had Vit D levels checks multiply times. All of the other checks you say as well and everything comes back normal. Except that I’m in EXCRUCIATING PAIN! I don’t know what I’m going to do. I woke up this morning and could barely move my arms. My elbows and shoulders have recently started killing me. Along with my hips, knees, and feet that always kill me. To even get up anymore is a task. I have to keep running and going until I’m ready for bed at night because if I sit down it’s terrible pain for me to get back up.

[GrittyReads in reply to Cstar1079]

Have they made any more attempts to check for fibromyalgia?

It is a 'very' real thing, and has recently received far much more acceptance and treatment from the medical community in the UK - after years of being dismissed in the way that ME used to be poo-poohed.

Ask to be checked for fibromyalgia.

Also, 2 friends have recently been told - after months of pain and loads of tests and dead ends - that they have 'polymyalgia rheumatica'. One of the main symptoms of this is: severe pains in the: hips, knees, ankles etc. on waking, although it does ease off once movement starts. I believe it responds well to a short course of treatment, but the diagnosis is the hard part.

It might be worth asking to be tested for that.

[Michiganpbc]

On the Liverfoundation.org website; it lists joint pain as a symptom.

[pmpaula]

I have severe joint pain in my hands, wrists, elbows, shoulders, knees and feet, before my PBC was diagnosed I was taking Naprosyn twice daily and this helped to control the effect the pain had on my daily life. After my PBC was diagnosed the consultant said I can never take any NSAIDS again, now I can only take Paracetamol which hardly touches the pain. I take Tramadol of a night, this helps a bit, but as this makes me drowsy I do not want to sleep my life away during the day. I have become disabled overnight as the pain is so severe. I am awaiting a referral to a rheumatologist but at the moment I am in constant pain and can no longer work. I am due to see my liver consultant in the middle of October.

[Cstar1079 in reply to pmpaula]

PMPAULA Have you had any luck ? I’m asking against because I feel the same way. SO MUCH PAIN!!!

[Cstar1079]

I've been told different things, but I COMPLETELY understand. I have the same issues. My joints hurt tremendously! It used to be mostly my ankles, knees, and hips. As of lately is it every single joint in my body. Toes, ankles, knees, hips, back, shoulders, neck, elbows, wrists, and fingers! Start at the bottom and work your up... it kills me. I have been told that people that have one autoimmune are more likely to have more. My doctor threw out the words fibromyalgia a few times. I didn't want to think that was even a real thing, but now I don't know! I hope you get some relief, and answers soon.

[jane1964]

Hello I also have severe joint, tendon and muscle pain.I have Bern seeing a rheumatologist for years with no real answers yet.This all started when the pbc did , it has got worse over the years, it's everyday .I also have occasional episodes when everything flares and I am in extreme pain and can hardly move.

[Cstar1079 in reply to jane1964]

Yesss!!! Some days are good (never GREAT) and some days it's like I have these "flare ups" and it's difficult to even get out of bed. To walk or to do anything at all KILLS ME!!! I have an appointment with a rheumatologist next month. So hopefully I will get some answers. Fingers crossed. 🤞🏼

[Louisethew in reply to Cstar1079]

This is me 2 weeks till I see rheumatologist, 😢

[Gioielli]

My shoulders are so painful nearly all the time but particularly in the morning. My wrists and hand are also sore but GP says this is osteoarthritis. Have an appointment to see a rheumatologist in November so hope he/she can help me. Will let you know.

[Flower-powr]

Hi all. I was reading some of your posts about joint pain I noticed that someone mentioned that they had awful joint pains and then they went again. I had this too and now they seem to have settled. Very strange. I'm awaiting a consultation with rheumatologist for possible PBC due to raised AMA and M2. My question is that sometimes I suddenly get so tired fr no reason and feel like I can't use my legs. I had this in my left arm and that led to my referral for raised bloods. Is it unusual for these symptoms to come and go? ThAnks all

[gwillistexas in reply to Flower-powr]

Hello. I was referred to GI because M2 & Alk Phos were high. I'm seeing we all get the brain fog & tired. Mine is usually in the afternoon.

[Krichards1971]

Hello! I also have very bad joint, bone and muscle pain. I have fibromyalgia as well as PBC. Have you ever been diagnosed with Fibromyalgia?

[Flower-powr in reply to Krichards1971]

Hi there. I haven't been diagnosed as fibromyalgia but one of my previous GP did mention it. I think I just decided to go into denial about it. I can only focus on possibly PBC at mo. I get soreness on my right side slot and very much do after fatty foods. Does anyone else find this

[Marysla]

Same here sick of it all .

I went to the doctor today because im crippled by pain only my inflammation markers are not showing it.

Sleep is very hard ect but my bloods are fine so there 😝😖

[Flower-powr in reply to Marysla]

It's very tough I know. Sometimes I think the drs don't believe us. I have had these symptoms so long now and only recently did my GP check AMA and M2.

[Cstar1079 in reply to Flower-powr]

That's me too! I went 5 years with all these symptoms, and only last year did they check for PBC. They said I was "too young" for PBC, I was 35 at the time. I literally had been to 29 different doctors. For heart, kidneys, GP, GI, PC, Ortho, etc. My husband thought I was SERIOUSLY CRAZY! My family telling me I'm a hypochondriac, that I have anxiety etc. etc. Yet I have neither of those, nor am I crazy! It was sooo bitter sweet when I got my diagnosis. I loved that I finally had some answers, and that I could show people I wasn't crazy! Hate that I have this painful horrific disease!

[Adrygaza]

I had PBC for the last 10 year and just starting having a several joint pain. I can't even hold my wallet some days. So, I believe you and I know you're not making this up.

[Vvourakis1980]

I have RA, as well as PBC and Crest syndrome.. I’m 37 and feel a lot of joint pain. Sometimes feel like I never had a chance.

[Cstar1079]

Hi GhostHunter! YES!!! The amount of pain I experience is unexplainable. It’s everyday all day although sometimes it’s a little better than other times. It gets excruciating if I over do it throughout the day. I used to cry because it was so bad but now I’ve almost gotten used to it. It’s getting worse though. I have noticed that trying to play a video game with my son (or hold my phone) makes my hands ache so terribly that it’s hard to grip things for the rest of the day or even bend my fingers. My elbows kill me when I’m driving or carrying something. Pushing up to get up off the ground or to push a door open feels like I’ve been working out 12 hours a day or just had surgery on my elbows and shoulders. The worst part of the pain is my lower half though. My hips, knees, ankles, & feet. OMG!!! Like I said unexplainable. Not to mention I’m 38 years old. How am I going to feel in 10 years or 20? I can’t even imagine. I wish there was something someone could do. People think you’re crazy, or that there’s nothing wrong with you. All because you look healthy to people. 😩 Nobody gets it except the people that share the disease. Which is why my Dr. told me to come to this forum. It’s a horrible thing to live with. I’m sorry I couldn’t be of much help. I hope you find the help you need. Let me know if you come across a miracle cure. Good luck & God Bless!

Cstar

[Nae51]

I have been dealing with a lot of pain in my knees and legs.

[Elkol]

Hi hon

I would like to ask how you feel now? Xxx