leg pain

[susanashworth]

Hi Everyone,

I would like to know if any one of you with PBC have suffered with leg pain when walking in elevated areas , and I work full time each day I feel worn out and so tired ,

[Skypony]

Hi, I have aching pain in my legs and feet when I've been standing or walking a lot. It lasts all the next day too even when I'm resting. I also have general fatigue. Don't remember seeing leg pain mentioned as a PBC symptom.. would be interested to know as I've wondered.

[Hidden in reply to Skypony]

Maybe "leg pain" is not listed as a symptom of PBC, but 'bone, muscle and joint pain' are - for me this equates to 'leg pain'.

Link: mayoclinic.org/diseases-con...

[jane1964]

Hello I also have leg pain in the front of the calves, it's worst at night and keeps me awake it feels tender, and sometimes I also get burning pain in the toes.I have a lot of muscle pain too and flares of joint pain I see a rheumatologist but she hasn't got any answers yet, I hope one day she will.These symptoms were the first ones as well as very bad fatigue which took me to the doctors leading to the pbc diagnosis.In my case I am certain it's all linked.

Jane

[susanashworth in reply to jane1964]

Thanks guys

[Hidden]

Heavy upper legs, leg pain, general feeling of tiredness in quadriceps. Afternoons more stiff legs and heavy, so tough to get out of chairs or get up to move without planning or subconsciously using hands to get up. Tougher and annoying to walk stairs etc.

Walks and other activities in the morning! Helps to feel better about myself and more 'accomplished'. I take my losses in the afternoons and accept the couch potatoe status whenever possible.

With flares occasionally bad bad legs, giving way, wobbly, tripping.

So yes leg pain essential part of my PBC since the beginning.

My flares are among other things triggered by heat, direct sunlight (on skin), extreme stress and bad food (too much gluten too much lactose trigger cholangitis and ulcers).

So I avoid that as much as possible. Rheumatologist says rightly those are triggers not causes of the illness.

Got diagnosed as UCTD too (undifferentiated connective tissue disease) last year after specialists couldn't make sense of so many different symptoms in addition to what is known of PBC. Overlapping autoimmune syndromes often occur with PBC. So I have signs of lupus, muscle disease and scleroderma with flares but all not strong enough yet to diagnose one of those. Time will tell which way if goes.

Overall finding out what triggers my flares, adaptation of life has helped me to gain back some quality of life. It took a long time and the luck I had to remove myself from my old life to sort all that out (triggers and day rythm).

I wish you strength and positivity. Try to keep moving as much as possible the times of the day you feel better!

[Janicemr in reply to Hidden]

Hi I have PBC and AIH I also suffer with aching legs feels like I have run a marathon most of the time and have constant tiredness.

[Cstar1079 in reply to Janicemr]

Me too! I'm on the go all day by evening I'm so tired, and in so much pain that I want to just flop down and not get up. Most of the time I don't even sit for dinner because I know if I sit down I'm not getting back up. I have to stay moving until I'm done for the evening or I will not get finished. My husband is always like just sit down honey... but I honestly have the hardest time starting to walk afain.

[Daisy1991 in reply to Hidden]

Hi martinap

You have all my symptoms, still not got full diagnosis yet but rhumy is thinking pbc and seronegative secondary sjogrens syndrome. I have been put on hydroxychloroquine and I am symptom free and I have got my life back. It might be worth an asking if hydroxychloroquine is an option for you if you are not already on it, it may improve things for you.

[Hidden in reply to Daisy1991]

Thank you Daisy yes I was on Plaquenil hydroxychloroquine and antibiotics for 8 months in2015 (I also have late Lyme Borrelioses to which my rheumatologist attributed part of the generalized autoimmune). It helped Some major flare back then but not overall unfortunately.

Just had blood results in yesterday and very frustrated. Non responder to two for three years now and first time not only lover panel is bad but also thrombocytes and prptrombine time/clotting etc

Have to go in again dread that terribly. Have to now see if I can get on the new medication which is expect to be available in Europe this year. All uncertain. Wish me luck and strength. Thank you

[Daisy1991 in reply to Hidden]

Yes I do wish you luck, I hope something will work for you. I feel your pain as I remember what it was like before meds, very unpleasant indeed. It is very unfortunate when meds are not successful, it is trial and error with them all. A lot with autoimmunity have trouble with them. I am one of the lucky ones I suppose, I have been ok on all prescribed. Fingers crossed for you!!! x

[Susanlynch in reply to Hidden]

I have to say this is the way it is for me as well I couldn't of described it any more accurate

[Hidden]

Have you had your vitamin D checked, I was getting pains in my legs not just muscle pains but bone pain and trying to get up from sitting took a lot of effort. My gastro sent me to rheumatology after saying fibromyalgia he checked my levels of vit D, and they were very low and since getting treatment for the deficiency, the pains are better.

I still get some stiffness after sitting and getting out the chair can be an effort but it goes after a few minutes of movement. It Might just be worth checking.

[Hidden in reply to Hidden]

Yes Vitamine D is regukarely checjed and I am on a monthly supplement. Thank you for asking. Vitamins are very important for us especially the fat soluble aomes K A D and E

[butterflyEi]

Hi susanashworth

I used to suffer worse than I do now. A couple of years ago I had my vitamin D checked and it was found to be moderate just after a winter sunshine holiday. I used a vitamin D spray under my tongue until just recently when I found a Bio Care product containing vitamins A D E and K, it also contain vitamin C and some vitamin B. Last year I was diagnosed with pernicious anaemia and am given vitamin B12 at 10 week intervals at the surgery. I am over 60 and had put it down to ageing and PBC but having been on these vitamin supplements for a while now and having the PA treated I feel a lot better. I am going to copy the link which describes all the contents of Fem Guard so that you can have a look but obviously I am not qualified to recommend it to you. However there have been articles which suggest that when a person has PBC it is more difficult for us to retain the fat soluble vitamins.

biocare.co.uk/default.aspx?...

hope this is of some help

best wishes

[Hidden in reply to butterflyEi]

Thank you for the link vitamine d gets supplemented and yes I think also many patients could benefit from a multi vitamin supplement! I will look into it!

[Daisy1991]

Hi

Yes leg pain and other pains for me too before meds, there is such an overlap of conditions with autoimmunity that it makes you unsure what is causing it. Do you have any other symptoms pains etc, or is it just your legs?

[susanashworth in reply to Daisy1991]

Hi Daisy

When I first went to the Gastro Dr I had been rushed to surgery with stomach pain where they removed my gallbladder , However that was not what was causing the pain as it still continues while investigated what was causing the severe pain in my upper right stomach they found I had PBC never did find what causes the pain and was referred to pain management for Chronic pain , I don't have it all the time it comes and goes but will put me on my knees its that bad , As a result I have learned to live with it and pray it wont happen when flying as I need to move around till pain passes . On the bright side I am healthy eat well and exercise .

[kaywire]

I too have leg pain at night - twitching and all sorts of fancy movements. I find if I rub magnesium oil on at night I don't have many problems. Google magnesium oil - It's actually not an oil. Also I am experimenting with Epsom salts for foot soaks and internally - you have to take a different sort. All these things are available on Amazon and do read the customer reviews - they are fascinating - it's nice to know that so many people have the same problems and that you can do something to help yourself. If you mention magnesium oil or Epsom Salts to your doctor their eyes glaze over.

[Cstar1079]

I actually suffer from terrible leg pain. My legs, knees, hips, and feet hurt everyday. I don't know if it is from the PBC, but I suppose it could be. Some days are worse than others, but when I'm on my feet for hours I can't even sleep because they hurt so badly. I often worry if it is something else that is wrong or contributed to the PBC as well. But I have had every test done imaginable. I hope you get some relief soon.

[Eileen-Emily]

Hi I have pain in my left hip area that spreads to my upper thigh. I was referred to a rheumatologist as it was thought I had polymyalgia but he said no however did have my hip area x rayed and I was found to have slight degeneration in my bones which at 71 is not unusual! but real arthritis to explain the pain and discomfort when trying to climb stairs lying in bed or even getting up from a seated position. Then referred for a MRI scan this showed inflammation in the left hip bursitis and connected ligaments also inflamed. I have been referred for Physiotherapy no appointment to date but have had a look online for exercises and think I will try them myself. I have both PBC and ITP and do sometimes wonder about side effects and also the affect of medication.

[Eileen-Emily]

should read NO real arthritis ! Apologies.

[mkem-594]

Hi,

My left knee has always had issues as I've had 3 knee surgeries. But the last few years the pain has taken over almost my whole leg, my right leg hurts most days now too. My right hip has of recent become an issue. We were out in London a couple weeks ago, and the spasms in my legs, hips, feet and sciatica were horrible. Once a week I take care of about 18-20 one and two year old's for our church. I absolutely love it, but Wednesday evenings I'm good for nothing. Doctors keep telling me that I need to workout more that it will help with my fatigue (insert eye rolling). For me all it does is make the rest of the day miserable. I'm originally from the states so this climate in the UK is different for me, and causes a lot of pain. I feel like a human meteorologist. Every time bad weather moves in of any sort my whole body aches, and here in England this time of year that is most days. My feet aside from aching also feels like the soles of my feet are on fire if I do any sort of distance walking. I was just diagnosed in December. The only good thing about having been diagnosed is that I finally have some validation for everything going on with my body. The last few years was really difficult constantly going to my GP and being made to feel like a hypochondriac. I haven't been diagnosed with any secondary autoimmune issues at the moment, but I deal a lot with really dry painful throat and mouth, I'm Vit-D deficient, constant itching (especially at night) and I am currently undergoing thyroid panels. My TSH has been staying pretty consistently below normal, but my endocrinologist hasn't solidified a thyroid diagnosis yet. One of the worst things about the itching is that every time I try to lightly scratch my skin for relief I get a horrible burning pain that last for a good minute or two afterwards. It feels like when you dry rub your arm across the corner of a wall or a hard object. It hurts so bad, but its hard not to try and relieve the itch at the same time.

[Jowen]

I have terrible leg and hip pain. It hurts if I move around a lot and it hurts if I don't. My right hip is all stiff and can't do what the left can at all. But before the hip got this stiff it hurt a lot more so I am pretty grateful because it hurts a bit less now. I am on vit D and calcium. I've been checked for Sjögren's but don't seem to have it. I used to be a fast walker and exercise a lot. Not any more... I have issues with my iron levels too. The exercise I do take seem to make no difference whatsoever. But being still doesn't help much either so I try just to live on. Would love to get my legs and flexibility back but no idea how...

J

[susanashworth]

Thanks to everyone for your input I plan on going back to see my Dr regarding my leg pain because I have to climb stairs at least 4times a day as I live on the 3rd floor But its good to know you are all on here to share stories !! Thanks

[janine541]

Hi i have terrible pain in legs joints. I dont have to walk or go up hills for it.

When i get out of bed in a morning its their. Till i come round. Struggle with stairs untill its gone.

Think its pbc