Lived Experience Forum

[Determined]

@soul trust todays appointmens have gone ok for you,

Thinking of you. 

[Bimby2]

Good evening @greenpea - hope your day has gone well. Bimby2

[Faith-and-Hope]

Thinking of you too @soul ..... 💜

[Maggie]

Hope things are ok for you @soul.

[Former-Member]

Hi @soul

Hoping all has gone well with your tests today and you are doing okay. Thinking of you 🌹

[soul]

Mixed news at my three appointments yesterday. I had some xrays taken and the doctor was pleased with how the fracture was healing. I can wean myself off the sling now. It feel funny without it and it gets tiring.

Next I had a session with the occupational therapist and was given some more exercises to do. 

After that, I went back to the neurologist. I had been there the previous day but he needed more time to complete his assessment so I was asked to return. He has diagnosed me with Complex Regional Pain Syndrome. The nerve damage in my shoulder region caused my hand to be also severely affected. This means that I have a lot of pain and my hand is swollen, feels hot, the joints are stiff, the skin is discoloured and mottled and is very sensitive to any stimuli. My brain is telling me that my hand hurts when it shouldn't really be.

Unfortunately there is no quick and easy cure. I was given some pain medication to take but it has made me feel so tired, dizzy and wobbly today. Not sure if I should persevere or put up with the pain. 

I will continue with my physio and occupational therapy session and hope for improvement. I'm on a bit of a downer. Have read lots about it and watched videos and it's all a bit frightening. 

[Determined]

Sorry to hear not all news was completly poaitive @soul
Trust there can be some improvement for you.
You continue to be in my thoughts and prayers.

[Former-Member]

Hi @soul......
I hope you don't mind me jumping on this thread as I don't really know you that well, and I don't really know your story - but having severely broken my arm and sustained severe nerve damage in it when I was 9 - I feel your pain.
I remember how hard everything was. I didn't get pain, I was just numb/lost all movement in my hand. But going through something like this can be really trying and I found most people didn't really understand how difficult it could be to operate with only 1 functioning arm/hand and how much time I spent at doctors/physio appointments (every day as a matter of fact!)

But I also wanted to tell you that this stuff does eventually heal, and though physio sucks lots it helps heaps. I've gained full and complete mobility and probably 80% strength back. So whilst it's going to suck a lot for a while, it will get lots better over the coming weeks and months. I promise!
I'd love to hear how it's coming along, and if you ever need to vent about it - feel totally free to tag me.

[Former-Member]

Hi @soul

So sorry to read that you are in pain. My husband had pain in his hand after having shoulder surgery - he did find relief after having physio for some 6 months as well as doing instructed exercises. He also cannot tolerate pain medicine well - I applied heat packs on the area of pain and this seemed to help him. I do hope you find reprieve from your pain soon and a speedy recovery x

[soul]

Thanks for the like @TheVorticon - no yoga for me for a while.

Thanks also @Determined for your prayers.

@Former-Member - no problems in jumping in. Your story and @Former-Member 's gives me hope. It's really hard after being so fit and healthy and capable.