Joints and stuff: Hi can I ask if anyone has... - PBC Foundation

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Joints and stuff

Alley27
Alley27

Hi can I ask if anyone has trouble with muscle and joints aches and pains.

When first diagnosed I did have aches and pain but recently and especially today I hurt everywhere. If I touch anywhere it aches. I have never experienced this before. It started with my joints being quite clicky. I have hyper mobilty syndrome on top of everything else plus steroid induced osteoporosis and osteoarthritis in feet, ankles knees etc. But last night and today I cant touch anywhere because it makes me ache.

After my shower today I slathered myself with arnica gel. Hopefully this will ease it, but as I said, this is very unusual for me. My right hip aches but that is my worst side with the osteoporosis and this clears up on it's own.

I just don't know what to make of it.

Take care everyone x

10 Replies
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Hi Ally, Ive had the same for around 10yrs now and its getting unbearable as with PBC i cant have pain killers and my GP wont give me Morphine patches as she said its not bad enough!!. How the heck she knows how much pain im going through daily is beyond me, I phoned her yesterday to ask for something to help me to sleep as the pain wakes me about every 20 to 30 mins through the night so i never get a good sleep, im exhausted all the time, this she also declined and has refered me to a sleep clinic. My muscle pain is there all day and night 24/7, my joint pain can ease a bit when i move around slowly, the muscle pain goes worse with movement so it a no win situation... Keep safe.. x

Alley27
Alley27 in reply to bev5779

Sorry you feel so unwell hun....I feel exactly the same. I have AIH and PBC overlap plus hashimoto's and osteoporosis....but this has never happened in the 9 years since diagnosis.

A friend suggested the possibility of fibromyalgia but you k ow what doctors are like with that.

I did my walk today but was exhausted afterwards I actually went to sleep when I got back. I noticed you mentioned sleep clinic, perhaps you need a pain clinic more...but I'm no doctor..

Take care x

bev5779
bev5779 in reply to Alley27

Thank you Alley hun, Sorry your going through this.. I think its my fibromyalgia thats causing my pain but my doctor thinks if you exercise it will go away, I also have Systemic sclerosis, Atrial fibrillation, Raynards which i nealry lost two of my fingers with a few years ago,

Diabetes, Virtigo..

My Rheumatologist has sent letters to my GP asking for her to send me to a pain clinic and to prescribe me amitriptyline but she just makes excuses not to.

I do struggle at home with nearly everything i try to do, i live on my own and have no living family left and friends dont want to know you when your start to become ill...

I'm looking into trying CBD oil for my pain...

Keep safe x

Alley27
Alley27 in reply to bev5779

Hi bev...you know you said something about friends not caring. Its amazing how your true friends or, who you thought were true friends don't understand and don't help...I felt this way for some time but recently got new neighbours. They are a polish family. 4 weeks ago I was quite unwell. Nausea, vomiting, dizzy delirious, head all out of whack. I had family in the house. I almost passed out on the landing but managed to keep myself upright...then the following day I managed to crawl out of bed to take the bin out, still delirious, still dizzy and I almost passed out again but my neighbour saw it, dragged one of their garden chairs over and he and his brother helped me sit down and they did the bin for me. Their English is not good at all and gave me their mobile with a English to polish translator . As a result they called my gp for me their teenage daughter spoke on the phone with gp . Anyway, gp sent district nurse she got me back inside to bed took my bloods and gave me an injection of antibiotics plus a pressure because she suspected a AIH flare with enlarged spleen and pancreas. Turned out it was pancreatitis as well as AIH flare.

My oldest supposed closest friend only messages me when she remembers and yes I know it's a 2 way thing but it used to always be me doing the communication.

My sons were in the house all the time I was unwell, they should have called a doctor out...I was left to my own devices. Even my partner stayed away and he knows if anything like this happens it's a serious matter.

I have learned that we have to be self sufficient with these illness...I couldn't call a gp or ambulance because I couldn't speak properly, I could barely make a rational thought.

Was so unwell this time...I'm considering getting a bungalow or ground floor flat but my son's will have to be rehoused as well. I have no idea how much longer I can stay in my house. Like you I struggle with most things and no real help for example, my fella knew I needed help with housework today but he just sat on his behind feet up watching telly. I'm getting rid of my tv tomorrow xx I dont watch it I prefer radio, so he won't be able to do that....

I have a store cupboard outhouse filled to the top with rubbish...its just old cast of things that have built up over the years whilst I have been working away, leaving my sons in the house...plus I have to find a professional oven cleaner because that's not hygienic either, theres no wonder my digestion is causing problems.

So yes I really do know where you are coming from hun...life with AIH PBC overlap and a few more little darlings...ain't life grand. Many of my friends haven't contacted me in years because I couldn't work 16 hour shifts, clean my house and spend two days a week visiting them or going out places...no energy. But, I have a couple of friends that I trust and I have made good friends through the royal British legion. I don't ask for help because I know it wont get done how I like it, but they would help if I ask. As for my neighbours they ring me if they dont see me out and about...they saw me yesterday and asked if I am alright because I look so pale...which I appreciate and know if they don't see me they will ring and if I don't answer they will ring doorbell and come in.

Take care and stay well xx

Texasliz
Texasliz in reply to bev5779

You might want to see a Hepatologist rather than letting a GP take care of your PBC. Mine prescribes Tramadol for pain, and I take Trazadone and Benydryl to help sleep quality. When I had encephalitis in 2019, I was prescribed Norco for the pain. So ...... see a liver specialist, please. You don't have to suffer like this! I also have Osteoporosis and Thyroid disease.

Alley27
Alley27 in reply to Texasliz

Hi Liz, sorry it's taken so long to reply, been trying to get things done here. I did contact my hepatolagist and he was brilliant. He arranged for a district nurse to come in daily for the week until the antibiotics and higher dose steroids started to work. He has ordered that I get my bloods done every 2 weeks to keep an eye on LFT numbers. I don't have a tv anymore and my partner is helping a little bit more. We don't live together which is a good thing lol, but he has been helping.

Its often very difficult for us with these illness in terms of keeping friends. However, I do have more contact with friends from the British legion...they saw me last weekend and noticed how pale and exhausted I looked. I now have phone calls every other day just to check in and if I need anything I just need to ask which is wonderful..

My lesson is if you need help, don't be afraid to ask...

Take care and stay well xx Alley

I have recently had tons of joint pain; hips knees and back. I asked my GP if I could get Celebrex because I really was wanting 4 ibuprofen every day. She asked me if I would consider physical therapy. I said I would try anything. She set me up with a physical therapist that does Trager therapy. I' m telling you it has been life changing. It's kind of like massage but with all your clothes on and they do a lot of gentle rocking motions . It sounds a little weird I know. Anyway, the therapist told me they used to do a lot of this kind of therapy 30 or so years ago but insurance companies decided they they didn't want to pay for it if they could just give someone a pill which was usually some kind of opiate. Anyway , it's pain relief without drugs and it really helps. Maybe you could check it out and ask your doctor if it might be an option for you.

Best wishes,

Pam

Everyday after I've sat for too long like an hour or something I can hardly walk

My first and still one of my most troubling symptoms is joint pain (severe at times) and muscle fatigue and sometimes muscle pain. I only have PBC, that I know of, at least. My docs don't really want me on pain medication because of the liver, so I've been referred to a doctor that specializes in medical CBD and have my consultation next week. I also suffer from severe fatigue, but also insomnia, so I'm hoping it helps with that too.

I hope you find some relief.

I’m sorry that you are in pain. I was there. Literally every freaking thing hurting... joints, muscles, bones...

But something has changed. I am doing the Mediterranean Diet. I tried the autoimmune protocol diet some time ago. I’m quite convinced that my pain (not saying it is the cause of your pain) is related to a food intolerance. I cannot drink milk, eat eggs or wheat without being itchy all over. I don’t know if it might help you but I would feel bad not mentioning it since it has helped me so much.

One thing that did help with my pain is wrapping up like a burrito in a heated blanket. It’s like a full size heating pad and it did help.

I hope that you can get some relief. 🌺

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