Joint , bone and muscle pain

Hi

Hope you are all feeling as well as can be expected. Do any of you get joint, bone and muscle pain. What do you do to help it? Lots of love to you all Lynne xxxx

[Millie09]

Hi Lynn, how are you ? How did your appt go at the hospital ? . Well talking of pain , I was getting pain of what I thought was sciatica , but on my appt at the Drs 2 weeks ago there was a letter from the QEHB regarding my dexa scan .I have had two of these donr now at 2 different hospitals in 12 months .I was told I had stage T _2 osteopenia in my hip .I am not allowed any painkillers other than paracetamol which I try not to take anyway . I was told I will have Injections every 3 months , so yes I have bone pain .also I get tingling in my left hand and toes etc .. I can't walk very far now carrying shopping bags etc.. and I have to be careful where I am walking . I'm having a bar stool delivered tomorrow for my kitchen so I can sit down . so your not on your own hunni . Love linda xxx

[Hidden in reply to Millie09]

Hi

Thank you so much. Consultant said need to lose weight, can off bloods I've been doing the right thing. Told me thyroid meds need to be raised which have been done. I had an ultrasound on Wednesday, spoke with my liver nurse on Thursday, she said my liver has gone more fatty, told her all the pain I get, she suggested I have a fibroscan, this will be in October. My first appointment with her was end of July, she is very good.im seeing rheumatologist tomorrow, my Dr said just so we can tick that one off!!

I really hope you feel better soon. Please take care. Lots of love Lynne xxxx

[Millie09 in reply to Hidden]

Hi Lynn , well I'm glad to see that at least you are being looked after ! I had my first ever fibroscan in Feb and it was off the scale .so I have end stage f4 fibrosis .I too had a scan and was told I too had fatty liver of which I was surprised at as my diet us pretty good .

You seen to have things under some sort of control now 😊 hooe all turns out ok .. Love linda xx

[Hidden in reply to Millie09]

Thank you. I hope you are feeling as ok as you can be. I'm quite scared as I've got Nash and was told it's getting worse. Just wish I could get some of the pain under control, or around liver, through to back, shoulders, shoulder blades and in between them. I know I'm lucky to have this liver nurse and that I've not had to wait as long as you! Thank you for all your support xxxx

[Millie09 in reply to Hidden]

Hi Lynn , well I'm just getting on day by day as much as I can .not a lot I can do at the moment .it's now all a waiting game for MRI and nerve tests again .my liver function is ok thank God but it do my stop the symptoms does it hun . I sympathise with you regarding the pain but yours is worse than what I have . I'm so glad you have the support now Lynn , you needed it .keep smiling ..love linda xx

[Hidden in reply to Millie09]

Thank you so much. I'm very lucky that I have such a good family and friends and the great support I get on here xxxx

[19581979]

Hi Lynne

I have lots of leg, hip and lower back pain, and stomach cramps. I have always put this down to my spinal cord injury and before that the spinal compression as it really started around then as did my spasms.

I'm now getting muscle ache in my arms.

I am on paracetamol, ibuprofen, codeine, and amitriptyline for the pains as I couldn't cope with the neurological tablets. I'm having antacids as well and blood pressure meds as well as laxido. I try to keep the painkillers to a minimum

It is the balancing act I need to do to function and walk a little and do part-time work and not be completely exhausted all of the time, in a lot of pain, and in bed. I do talk with my doctor about it.

Like many I am trying to lose weight and do some exercise. I never have enjoyed swimming or gym work, but I'm starting to get out doing a bit of gardening with my hubby. It shows how much he loves me, as he hates gardening.

Best of luck with pain management and quality of life balance. It isn't fun but I hope you get the right balance for you.

Gill x

[Hidden]

Thank you so much, I really appreciate your kindness. I only do part time instead of full time, I'm exhausted all the time. I'm trying to lose weight but have under active thyroid, they've put my meds up. They said if I don't lose weight my liver will go worse , not what I wanted to hear!! I'm trying to exercise as well.

How are you feeling? Thank you once again. Please take care. Lots of love and hugs Lynne xxxx.

[sammy23]

Hi Lynne, At the beginning of this journey my only symptom was joint and muscle pain it had become quite debilitating that's was why I went to my gp in the first place, never in my wildest dreams did I ever think that I would be diagnosed with liver disease ( 6 years on I have aih/pbc). To cut a long story short I don't have any pain at all now but I do walk a lot more and I do gentle yoga 3 times a week, I actually think it's the yoga that has helped, it could be a coincidence but it might be worth a try. Take care Samantha

[Hidden]

Thank you so much for the advice, I will give it a try. Xxxx

[Hidden in reply to Hidden]

Hi

Thank you all for your kind words. I saw rheumatologist today. She said I've got fibromyalgia!!, Got to have scan and bloods, wait until I've seen pain management and go from there. She is trying not to put me on something too strong because it will affect my liver!

Hope you are all doing as well as can be expected

Please take care. Lots of love Lynne xxxx

[Millie09 in reply to Hidden]

Hi Lynn , my daughter aged 37 was diagnosed with fibromyalgia last week .all get joints ache especially her wrists and knees .they did further bloods to check there's nothing else she has been referred for physio at her local hospital .she is on no meds untill tests come back .glad you at least know what it is and yes it's painful

I am the same with my hip pain due to the bone being transparent .I can't walk far and I have to be careful when walking .which is not far .I can only stand for 20 mins without being in pain .I can't take anything other than paracetamol due to my liver too .I'm waiting on referall for Injectiions. You take care of yourself hunii.

Love from Linda xoxox

[Hidden in reply to Hidden]

hi lyne i to have fibromyalgia have had pbc for 8yrs on urso 1000mg cannot take anything other than paracetamol for fibro the scans and bloods are to rule out anything else like ra or luus as thete is no specific test for fibro other than the provacation (touch) test and listening to your symptons as obv you have passed all of these if rheumy z u have fibro good luck to u xx

[Hidden in reply to Hidden]

Hi

Thank you so much, you are so kind. How are you feeling? Take care xxxx

[Hidden in reply to Hidden]

feelin in pain is normal so now i just say im ok lol im going for a fibroscan on tuesday for liver so see what that brings i am so confused over this liver prob i just don t understand it and the fact i have never seen the same dr twice does nt help everutime i go to clinic its like seeing them for first time and they all have diff ideas so frustrating but hey ho thats life lol i cannot stand for long either my legs tremor and hips are awlful like u x

[Hidden in reply to Hidden]

I know, it's terrible isn't it? I'm lucky I see the same consultant! But we have to keep smiling don't we?!? Good luck on Tuesday.

Please take care. Lots of love Lynne xxxx

take care.

[Hidden in reply to Hidden]

same to u gentle hugs xx

[Hidden in reply to Hidden]

Thank you xxcx

[Miche49uk in reply to Hidden]

Hiya Pattie one of my good friends has fybromyalgia and I think she's having a US soon as her liver tests weren't fab , she's a lovely lady and the same age as me. Like you and Lynne she rarely complains, she's also had 4 years of recurrent UTI's on top and now vasculitis! Poor thing. She aches a lot but still took us to an observatory to see lots of wildlife which we all enjoyed. I personally ache a lot lately, my results from blood test Friday are already showing online and calciums ok so god knows why, probably tension and stress I suppose. I had raging sciatica recently but the codeine phosphate made me like a zombie so I binned it and put up with it, hadn't had it for years! You take care I'm rooting for you Tuesday! Xx

[Hidden in reply to Miche49uk]

How are you now? Please take care. Lots of love Lynne xxxx

[Hidden in reply to Miche49uk]

thank you hope u get sorted soon yourselffibro is hard coz nothing shows on test and u sometimes think they got it wrong but they have nt my worst part was giving up my job at christmas took me weeks to adjust just felt useless and old 61 but adjusted now like many other illness u can t help it u did nt ask for it so just put up with it i have five lovely grandchildren age 3to 13and not fair for them to see me whinging lol so brave face time gentle hugs back tp u and your friend x

[Hidden in reply to Hidden]

I bet your grandchildren keep you smiling!! Take care xxxx

[Miche49uk in reply to Hidden]

Thanks Pattie you're so kind, I do think there is a potential link between childhood and some of these later illnesses we get.. I could be wrong.. xx

[Hidden in reply to Miche49uk]

You are so kind and brave. Xxxx

[19581979]

Hi Lynne

I'm going to the spinal unit for a check-up September 19th. I will try and check with them to see how much is sci and how much is liver. Trying to get pain management and exercise versus tiredness is a nightmare. I had a weeks holiday had a lot planned but spent most of it really tired. It showed I put a bit of weight back on. Only 2 pounds. But they were hard to get off the first time.

Got to make the effort today as I'm meeting a client this afternoon and I have paperwork this morning.

Love working with the people, hate the paperwork.

Gx

[Hidden]

Thank you. I've just been diagnosed with fibromyalgia! Got to have scan and bloods, pain management on Monday. Consultant said she didn't want to prescribe anything until I'd had everything done. She said she would be very careful what she prescribed because of my liver. Thank you for all your support. Los of love Lynne xxxx

[19581979 in reply to Hidden]

We can try to help motivate each other to do the right thing. She is right to be careful. My doctor had tried the neurological pain relief for me, but I couldn't manage the lack of sensation in my legs due to my spinal cord injury. It also caused bowel and bladder sensation problems. These go with the sci. Hopefully they will get the balance right for you soon.

Gx

[Hidden in reply to 19581979]

Thank you so much. I hope you feel better soon. My Nash has been caused by all the meds the drs have thrown at me over the years so I'm glad this consultant us being careful. Lots of love Lynne xxxx

[Miche49uk in reply to Hidden]

So am I Lynne as they think all the meds my friend were given have given her deranged liver blood tests, I'm keeping everything crossed that she doesn't have any major liver issues. She certainly doesn't drink, in fact none of my friends do but she sure does like cake and so do I! Oops! Xxx

[Hidden in reply to Miche49uk]

Hope your friend is ok.

I love cake too but have to just window shop now!! My Dr said I can have a little bit !! Xxxx

[Miche49uk in reply to Hidden]

Oh that's good then, I might have a little bit too, I feel so bloated and I'm sure it's being housebound a lot and not exercising, I don't drive which doesn't help or I'd take myself to the pool! Used to swim daily to include the day before my daughter arrived, empty pool, just me and about 4 concerned looking lifeguards lol I do at least remember jokingly saying "don't panic, I know this isn't a birthing pool" 3am the next morning and 5 weeks early voila Madam impatient arrived lol xx

[Hidden in reply to Miche49uk]

I know, being bloated is awful isn't it? I try and walk each day but it doesn't seem to help. I'm working part time instead of full time now, I also have a very understanding boss and also good friends at home and work which helps. I'm very close to my family too. I know how lucky I am . How are you today? Where do you live? Xxxx

[Miche49uk in reply to Hidden]

Oh that's good Lynne, I lost Mum last year so no family now except my own of course.. I live near Camberley in Surrey.. you? Glad you have good support it counts for a lot.

Yes bloating is awful, I'd totally forgotten I have a history of ulcerative colitis too but no flare ups since pregnancy and I equally wonder if it isn't my endometriosis causing havoc which would explain lower back and front ab pain.. god knows, I'm mouldy lol xxx

[Hidden in reply to Miche49uk]

I'm so sorry you lost your Mum last year. I lost my dear Mum 7 years ago and my dear Dad 3 years ago. I miss them both so much.

My son has Crohn's disease , I know the pain he has gone through is just awful. He's on infliximab infusions at the moment which are working great. I'm sorry you have got something else endometriosis too. I've got ibs and diverticulitis too!! I'm a right demic 😉 xxxx

[Miche49uk in reply to Hidden]

Oh gosh your poor son that's very tough, I've had 1 bout of diverticulitis that came on very fast and hurt like hell and put me in hossie.. not nice, I do seem to like the itis family along with the odd osis lol sorry about your parents too, I don't feel like I've grieved for mum even though it's over a year and I was with her it just won't sink in, got the nurse to check her about 4 times! One minute they were talking respite the next palliative care.. sigh oh well off to take my daughter to bed to read David Walliams awful auntie! Quite enjoying it.. take care Lynne xxx

[Hidden in reply to Miche49uk]

Thank you. I don't think I will ever get over it you just learn to live with it. I'm having counselling which I think I should have had at the time and didn't.

My son was diagnosed when he was 12, there were children even younger than him on the ward.

You take care too xxxx

[Hidden in reply to Hidden]

I meant to say I live in Rochdale, North West England. Xxxx

[Miche49uk in reply to Hidden]

Oh nice I have heard of it xxx

[Miche49uk in reply to Hidden]

I know exactly what you mean, I also agree you don't get over it and I do remember ringing cruise many times as I just didn't know what was normal and what wasn't, The house was so empty without her and I still have what I can only best describe as auditory flashbacks and I'm still waiting for counselling...some wounds never heal they just stop bleeding..

I'm so sorry about your son, Crohns is not nice and it must have been heartbreaking to watch him suffer at such a young age.. hope he is doing ok.

Can't sleep tonight, 2am now, partner just got up for work, our paths crossed on the stairs, best I try and get some rest or I'll be a grumpy mummy when my daughter gets up for school!

Xxxx

[Hidden in reply to Miche49uk]

Thank you. My son is great at the moment and his on his third year at university, we are very proud. He had to have major surgery in his first year and had to start the year again the following September. He has coped do well. My other son has a lot of digestive issues, he copes well too. He got a first last year in English and has just finished doing his masters. Obviosly very proud. I'm no where near clever enough to do what my son's are doing!! If they can cope then so can I!!, My husband copes very well with us all!!, He said he feels helpless which I understand. Sorry for waffling on!! Night night God bless xxxx

[Miche49uk in reply to Hidden]

Aww yes it's hard for those who care too! Your sons have done fantastically well you must be so proud

You aren't waffling you're just saying it as it is.. I know my partner feels unable to help regarding PTSD but I did say yesterday that I do understand that but just being empathic is sometimes all one needs to feel supported.

Hope you got some rest xxxx

[Hidden in reply to Miche49uk]

Thank you, no sleep at all last night!! I'm on auto pilot!! How are you? Xxxx

[Miche49uk in reply to Hidden]

I'm tired as usual and feel like a bloated oink, checked my medical records and the diabetes test came back normal too so that's good but I don't feel anything anyway. Xxxx

[Hidden in reply to Miche49uk]

Take care xxxx

[Miche49uk in reply to Hidden]

Sorry you had no sleep eek hope you're ok xxxx

[Hidden in reply to Miche49uk]

Hi

How are you feeling tonight,? Xxxx

[Miche49uk in reply to Hidden]

Hi Lynne I apologise for the delay, I took my daughter to bed to read after the great British bake off!! I fell asleep in her room, once I get in that double bed and get comfy, I fall asleep sometimes! I didn't take a pill, I think, so that's good, I fell asleep naturally.. how are you today xxx

[Hidden in reply to Miche49uk]

So so thanks. I managed a couple of hours last night which is good for me!! Dr has prescribed me a different med for my pain which also makes you sleepy, I can start taking it on Thursday when I've come off another tablet. Hope it helps!! Thank you for all your support, it means so much and to everyone else on here too xxxx

[Miche49uk in reply to Hidden]

Aww that's good then Lynne, that you slept a bit anyway, I hope it helps you too! My friend has a lot of pain meds. She had a pain free day yesterday which is great thank you for your support too, you are a caring lovely person

I'm seeing a lady on Monday as I reached out for help (again) she rang this week and sounds really nice and works for a support centre, it's a bit further away but I'll get the train, I had a feeling she was a trained counsellor so I did use pesky google and she is very well accredited so I'm pleased, I could tell because she was ensuring I was grounded at the end of speaking to her ..

They have access to RASAC too and piles of other services. So I'm keeping everything crossed. They have art sessions and all sorts too. She crochets, so does my friend in Gloucester with fibro and makes beautiful things.. I'm just a cross stitcher and I colour, I think everyone secretly has a colouring arty side, even my partner has the odd go and won't let anyone touch his masterpiece!

He's gone to Coventry to deliver meat today so I have a silent house for a while, sometimes he goes to London through the night or the Isle of Wight in the early hours! I can't keep up with his strange hours.

Do/did you work? I meant to say I have relatives in Manchester and years and years ago I was in a paintball team when I lived in London and my flat mate was from Ashton under Lyne and we went up and stayed with his parents and had a match up there, I'd forgotten that!

Anyway I'm waffling as usual..nothing new there! Nice and sunny today so that's good..well, so far anyway!

Michelle xxxx

[19581979]

😀

[Sherrych]

Hi Lynne_MA, yes I too have the same pains you mention. Since liver disease patience shouldn't take any type of medication it sure makes dealing with pain hard. I use a lot of natural pain reliever creams such as liniment and essential oils...they do help a lot. I also use lavender oil at night on pulse points that helps me sleep better. The big thing I have found that keeps the pain low is to stay away from eating sugar and gluten. Hope you have a pain free day! Sherrych

[Hidden]

Thank you for your advice, I have tried most things so watch this space!!!! Xxxx

[Hidden in reply to Hidden]

We hope you are feeling better soon Lynne, we always appreciate your positivity on the forum,

Take care,

Team BLT

[Hidden]

Thank you so much xxxx

[Pussycat65]

I get very stiff in my joints but I just grin and bare it! When I mentioned it to my specialist she said it was nothing to do with my liver condition. I have definitely read somewhere that it does.