Joint pains, ehlers-danlos, vision disturbance .

[Diamonddaisy]

I'm sure this is a strange one to ask, but before I had my first AF on Aug 10th, on top of utter exhaustion and serious dementia like symptoms , the pain levels in all of my joints was off the scale and relentless. Usually in the summer months I have some relief from pain till the winter arrives. I also have mild osteoarthritis these joints were particularly severe... All of the pain disappeared once on apixaban and bisoprolol. My GP dismissed this but a couple of times when I've been slightly late with my meds my pain levels have risen. Just wondering if anyone else with osteoarthritis or ehlers-danlos experience the same.

One other thing... Since August, particularly if I lay on my right side I get a strange electric blue thing/light on/under my eyelid only in my right eye as I'm trying to go to sleep. Sorry it sounds so random. Ty

[Diamonddaisy]

Sorry should say I have hypermobile eds

[Diamonddaisy]

Also got my left and right confused if I lay on left side and it's my right eye, guess it's the bean fog, sorry

[BobD Volunteer]

Sorry but I have no knowledge of your condition other than the arthritis but find it hard to understand how an anticoagulant and a beta blocker can stop this pain. A lot of people complain that anticoagulants GIVE them joint pains.

The vision disturbance I can see a connection maybe with AF but not being a doctor this is rather unscientific. We do know that during ablation when the septum is punctured this can result in migraine aura for a few weeks but since you have not apparently had an ablation the connection is vague. I would suggest that you keep banging desks looking for an answer especially to the vision issue and maybe a trip to the oculist/optician would be a good idea just to check that there is nothing going on inside the eyes.

[Diamonddaisy in reply to BobD]

Thank you BobD I've just had my reminder letter for routine eye test and will book today. All this is a new learning curve. As the eds and the afib are recent diagnosis, I'm becoming and expert with EDS and actually know more than a lot of medical staff, some haven't even heard of it. Now on a quest to understand all I can about this. I'll choose a different GP in my practice to head bash. They all know me well and was disappointed at being abruptly dismissed last time.

[CDreamer]

Hi - I’m hyper mobile with osteoporosis & osteoarthritis and anytoimmune Disease and taking anti-coagulants and not noticed any of the synchronicity you mention but would suggest that if you take your meds 12 hourly and therefore in the morning and the evening, then these are the times that I find I am more likely to have pain - mornings are stiff joints and takes a while to get going and evenings if I have been on my feet a lot that day.

Hypermobile EDS accompanies many Autoimmune conditions so have you been tested for Rheumatoid Artritis markers? Just a suggestion.

When my knees get very bad I tape them, which helps enormously as without they move too much when I lie on either side and cause a lot of pain which prevents sleep. And also have myofascial release - which helps the strain on tendons which get inflamed otherwise.

[Diamonddaisy in reply to CDreamer]

Thank you for your reply, I think I need to find time for me and get sorted. I'm busy dealing with disabled daughter and frail mother who is having regular falls and some pretty bad injuries, so seem not to have time for me, my fatigue is off the scale too and am forgetting a lot of stuff ie appointments (just missed flu jabs yesterday, busy trying to get care plan for mum, sort out support for daughter at school. Trying not to stress but most of my days my feet touch the floor in the morning getting kids up, then mum dealt with then work, usually don't stop till after 10pm where they just crawl back to bed, sleep is poor due to pain, has been like that for the last 3years unfortunately x

[CDreamer in reply to Diamonddaisy]

Well that might explain a lot! I think you might need help, now.

No good waiting until you collapse.

Hope you are able to sort something soon.

[Hidden]

Not sure. You should check the leaflets detailing side-effects with all of your meds. Avoid any use of screens (computers, phones etc.) for at least two hours before going to bed. Have a sight test to check that you are not having a vitreal detachment (although this sounds unlikely from your description).

[Diamonddaisy in reply to Hidden]

My eye test was good though I did need a new prescription pair of glasses and nothing else was seen on examination. Thank you for your advice. The issue of the bright blue disturbance is now very rare and have gained no answers from the medical side so far but I'm not stressing about it either. Thanks for your reply