Dizziness and falling over

[Rosehip19]

Just today discovered a piece of research from 2010. It was looking into the prevalence of falls, dizzy spells and weakness in the legs in people with PBC. They came to the conclusion that it is very much more common - both the falls and resultant injuries.

Am very interested in this as I do get a bit giddy at times, and fall over quite a lot. Last time was on Wednesday when I was having a nice paddle in the sea with my grandson, lost my balance and sat down inelegantly (and fully clothed) into the waves!

I can’t find much information about this, or any further research into the subject. Can anyone update me?

[Hidden]

Hi

I have Nash with fibrosis caused by meds from Drs. I get all of those symptoms you have, I went very weak when I was having a little walk , couldn't move and had to get my friend to come for me. I've not been diagnosed with pbc but seem to have a lot of the symptoms. Love and hugs Lynne xxxx

[Ellewoods1 in reply to Hidden]

What meds caused your fibrosis?

[Hidden in reply to Ellewoods1]

He didn't specify, just said cos I'd had a lot that I'd been long term. Love and hugs Lynne xxxx

[butterflyEi]

I am not sure whether this would have been an embarrasing moment or one of those events that will become a fond memory for your grandson. Either way I know my pride would have been dented.

My dizziness and stumbling I believe is associated with my diagnosis of pernicious anaemia and lack of B12 however since regular injections this has improved. It is interesting that it could also be associated with PBC.

I think the article you refer to may be this one:-

academic.oup.com/qjmed/arti... and is dated 2010.

[Candy12]

I did read something a few years back, it was a post on here sorry I can’t remember any more but maybe search under dizziness. I get dizzy and disequilibrium due to ear condition, I could never paddle in the sea the movement makes me loose my balance. Maybe a visit to your doctors would be a good idea.

[beluga1]

I sympathise rosehip. But you may be pleased to know the same has happened to me. 5 falls in last 4 years resulting in broken bones and sore swollen knees. On 4 occasions i was walking on tarmac not carrying anything and had only walked about 5m. It sounds crazy but i just go down. Most embarassing and inconvenient. Noone can tell me why. I apparently don't have postural hypotension but i often feel dizzy and spaced out and my legs always feel stiff and weak. I am super cautious when i go out but it still happens. In a bizarre way its good to know i'm not alone. I will keep plugging away at the research out there also. Stay safe.

[Hidden in reply to beluga1]

beluga1 - do you have osteoporosis?

[beluga1 in reply to Hidden]

I just got this cos it landed in spam. Yes i do have osteoporosis abd arthralgia. My rheumatoid factor is slightly low but specialist says i dont have rheum. Arth. I also have ibs and constant viruses and other weird stuff. My pbc specialist seems only bothered about itch and fatigue. Although they like to know about utis snd chest infections. I take urso abd oca trial drug 50 50 placebo. Likely im on real thing as my alk phosphate went from 1200 to 200 in 3 months after taking it. This heat is doing my head in. I hardly get out and im not old. Went out the other day and went over on my ankle . Fortunately my daughter was there to stop me falling. Ahh i also tip over to the right sometimes like im pissed. Ha ha. But no this can all happen with no silly heels or alcohol involved. Only sensible shoes for me. Hope this helps. Feel free to get back to me if you want further info or some understanding. Take care

[Hidden]

Rosehip19 - you were brave paddling! I get a feeling like dizzy but not quite that. There feels like a delay between my brain and legs when I become unsure where to put my foot when walking. I also tend to veer off to the right when i don't wish to! (this is the one that makes me feel dizzy). I never carry a bag in my hands anymore, just a backpack. That helps me, hands-free, to keep my balance. Also, I wear shoes that a friend once described as "you'd go a long way to find shoes that ugly" !! I don't think them ugly. They are what keeps me on my feet. Like butterfleEi, my problems lessened with B12 injections. The dizziness I think in me is some arthritis in my right temporomandibular joint (TMJ) which somehow affects my ear and causes balance issues. I'm guessing that, by the way.

[2bear]

Hi do u have any up to date research ? Don’t know who did the research and the statistical significance as opposed to correlation - thank u for sharing.

[Katienharley]

I’ve only been on Urso for about 6 weeks and I would get dizzy and lightheaded almost everyday...was thinking it’s my body getting used to the pills. I changed my diet to be very healthy and I find now if I eat “crappy” food (pizza, burgers, etc.) I get dizzy. Not sure if it’s all related or in my head?! It’s weird. I just stick to lean meats and lots of fruit and veggies now and the dizziness is gone.

[Rosehip19 in reply to Katienharley]

I did have fish and chips before the fateful paddle ......!

[Hidden in reply to Rosehip19]

Rosehip19 and Katienharley, maybe food in the stomach, especially anything that calls the liver to release bile, either through content or volume, takes up too much energy to spare any for balance etc.

[Hidden]

Rosehip19 - I read the article butterflyEi gives a link to - I had those "unsteady" feelings years (about 10) before diagnosis though it seems very likely that PBC was always the cause? Have you had the symptom for many years?

[Rosehip19 in reply to Hidden]

I think I’ve had it for a long time - way before I was diagnosed with PBC. Since late 1990s. Fortunately no injury, despite having osteopenia.

[Hidden in reply to Rosehip19]

According to Dexa scan, I'm rated as having osteoporosis and have been offered Denosumab. I have decided to eat and act in a way to do the very best I can for my bones WITHOUT those drugs. Have you been supplementing with Vit D, K, etc, and do you know how your rate of bone loss compares with the standard that is used to tell us if we "ought" to be taking some drug?

[AngelaBarron]

Hi, I’m going through a dizzy phase at the moment. I have a feeling that it’s due to eating too much sugar, had a baking phase, and so putting on extra weight which could just affect the meds. I was diagnosed after prolonged dizzy spells and feeling like I was going to die about three years ago and have been lucky that I have so far responded well to Urso. I do have arthritis though and wonder if that in my neck and shoulders could have any bearing on the dizziness. I do fall over too, dislocated shoulder and broken wrist so far, but that could be because I don’t look where I’m going!

We are lucky though, at least we have a condition to blame for our ills. My poor old Mum never knew what was wrong with her and suffered with the itch for years with very little relief or explanation. Keep smiling and standing up if you can!

[Hidden in reply to AngelaBarron]

AngelaBarron - ditto my mum. Though she wouldn't have welcomed being told what was wrong with her, and she never ever asked. She was definitely of an age where scratching would have been avoided simply through fear and shame of being thought lousy! She used to tell her children to not scratch. I'm glad she did! Keep standing! Good motto, thank you.