Serious pain

[DW7186]

Hi,
My apologies for posting.
I am in the UK and was diagnosed with flail arm syndrome. My left was confirmed as subluxated which I was trying to manage with pillows and slings.

I've been struggling to raise my right arm but thought it was anxiety due to diagnosis and being worried about what's ahead. I've spent the day with excruiating shoulder pain in my right arm and I'm really worried it's started to partially dislocate too.

I know flail arm is rare so the UK forum doesn't have alot of advice, but is it this painful usually?

Thankyou for any help. Best Wishes Denise

 

[lgelb]

You don't ever need to worry about posting here, Denise. That is what we are here for.
Yes, there can be pain in subluxation. There are nerves there that can be pinched by the abnormal position of the joint, and it is a strain on soft tissue (ligaments and tendons).
It is also pretty common to have bilateral subluxations because flail arm onset is bilateral. I would not try to raise the arm yourself at this point without support, so as to not worsen the position of the shoulder.
A second person can still do ROM exercises for you, but for the elbow, wrist, and fingers (not the shoulder, in other words), and always with the shoulder fully supported in place.
I will send you a link to a video with some of those exercises.
Whatever sling you are using for one arm (GivMohr is one of the best), it could be time to use for the other, when you are not in a seated or lying position where the arms can have support another way.

 

[DW7186]

Thankyou so much Laurie!
I'm trying to still manage on my own, I looked at a video of the givmohr sling,but I don't think I can bend my arm to fasten it.

I refused to go back to my MND clinic after an awful diagnostic process, so now I just have a GP.

I don't have a second person for ROM I've just been managing alone but I keep trying exercise until today and now I'm in agony.

 

[lgelb]

I am sorry. Is there an NHS benefit for a physio to come to your home on a regular basis? I know of at least one other Brit with FA who managed that, admittedly in different times. He also had a nurse to coordinate assistance. Perhaps your GP can sort something?

 

[DW7186]

I do have the option, I was referred to the MND physio who advised me over the phone.I still have all options open to engage with the MND team who can home visit.

I'm really struggling with the idea of people coming into my home, I didn't like it before,even friends or family.Before this my plan was to move to the Scottish highlands with lots of animals and be very off grid. So I'm a bit lost on what to do! Not the best of diseases for the introverts.

I'm seeing my GP Monday.Thankyou for the exercises,I really appreciate your help