Shoulder issues

[TinyLady]

I'm having to ask you for help because I'm at my wits end. My left arm has been weak and wasting since earlier this year and pain started in my shoulder a couple of months ago.

This has all got worse and worse and my shoulder is causing me so much pain now, I can barely move my arm because of the weakness and pain. It goes from my shoulder down my arm to my elbow.

I went to my normal physio (not a neuro physio and not experienced with MND) but he is private, so will at least see me. He said my shoulder feels very weak. He thinks there is a rotator cuff issue, impingement and possibly risk of dislocation. He said probably all MND related so exercises won't fix it.

Earlier today I nearly fell and in reflex tried to move my left arm. I think I might have temporarily dislocated my shoulder because the pain was unbearable and I was just screaming and crying for a few minutes unable to move.

I'm taking codeine and oramorph, which helps a bit. But I feel like just chopping the whole arm off (if only I could!).

Has anyone had this? What can I do? Should I buy some kind of sling? I can't think straight for constant pain and I'm exhausted. I thought MND was painless! Any suggestions?

P.s. I'll bring the Chinnock back later for a catch up 🙂

[Claireflo]

Hi TinyLady I would say it's lovely to hear from you but it's not nice to read that you've been in such pain. I don't have anything useful to offer as I haven't experienced this yet. Dad's right arm has started to get weak over the last few months but it's not to this level and he doesn't seem to have any pain.
I know you've had difficult experiences with various medical people but if you're on codine and oralmorph then it dies sound like you need to have it looked at sooner than later. Hope you are out of pain soon, thinking of you x

[Bowler]

Ann also experienced similar issues with her left shoulder which was by far her weakest side. Originally it was put down to MND however after several consultations and scans it turned out to be a frozen shoulder. It took a lot of convincing but eventually a minor key hole op sorted it. I’m not saying this could be the same problem for you but not everything is MND

[TinyLady]

Thanks Claireflo - I'm not sure who to try to get to look at it. My Oramorph and Codeine were supposed to be ad-hoc for other issues, but now I keep having to take them just to get the pain to a level I can function.

Just wondering if strapping it up totally would help or ultimately make it worse!

[Tony]

When I was still able to walk but my right arm was very weak I used to get a lot of pain in my shoulder and had to use a sling which definitely helped. As I don’t really walk anywhere these days (just shuffle around the house) there is no weight on my shoulder from my arm so it’s no longer a problem. Hope you find a solution.

[Cinderella]

Hi TinyLady before mnd (and when everything now gets attributed to it, so have to put up and shut up) - I had what the doc called frozen shoulder and was carrying my arm around with the other to support it, the only nhs solution was an op, I went to an osteopath privately - the first session was mildly painful and left bruises on my arm but it fixed it straightaway, I walked out feeling such relief! She gave me some small exercises to do until the next appointment and when I went back she said no need for anymore treatment. Worth a try? Xx

[TinyLady]

Thanks everyone. I think my physio helps a bit with hands on work, but not much. He said he can feel how weak the muscles are and that any movement is dislodging the joint. Although I don't walk, arm rests are often too low for my arms, so they still hang.

My left side is my very weak side side, but it could be unrelated to MND. I suspect it is weakness though. I will go to my GP and see if he can suggest anything. My hubby had frozen shoulder and it was a bit different. It would be good to get the pain under control xx

[Ellie]

TinyLady I had awful shoulder pain caused by the inability of my muscles to support the joints.

The only thing which really worked were nerve block injections, in which a local anaesthetic (Lidocaine) is injected into specific nerves, blocking pain messages being transmitted to the brain, plus steroid injections into either the joint or muscle. They give relief for a couple of months.

If your pain is due to spasticity, although it doesn't sound like it, Botox injections can help.

I wore a sling for a while but my shoulder joint quickly became too weak to support my arm in the sling. I still need my arms to be fully supported at all times; if armrests are too low, if the armrests can't be raised, I rest my arms on cushions. Even in bed, my arms drag on my shoulder joints, so I pop little pillows under my arms.

Hope you find a solution. xx

[TinyLady]

Ellie - thank you so much. Your response really resonated with me. That's what I am doing, cushions everywhere trying to keep the arm/ shoukder supported. It does very much sound like the same thing. You describe it similarly to my physio too.

That has given me a bit of faith I'm not going bonkers. I will see my GP but doubt they will do much. I will continue with cushions and support and see what my physio says about a sling (even if short term). It's so frustrating when the arm is weak and any remaining movement is so painful.

I need to do something otherwise I'm very grumpy (or dozy, or both 🤣)

[Ellie]

I will see my GP but doubt they will do much.

Tell them you *need* the injections and if they're not available in the surgery, then you *need* to be referred to someone who can, maybe a pain clinic or Rheumatology - my Clinic offers the injections but I won't even suggest that you ask yours 😳😬😘

[Tracey Mason]

TinyLady I have the same issue only it’s my right shoulder, I was diagnosed with rotator cuff injury and given a steroid injection in April 2022 and in May 2022 diagnosed with bulbar ALS. I have struggled with the pain compounded by muscle waste, my palliative care team gave me pain killer patches low dose which has helped massively, having read everyone’s comments I may ask my GP for another steroid jab. Also I have tried all the coping strategies such as pillows and sling it does help. I just feel that because we ALS that we have to learn to live with it which is not right.

[TinyLady]

Tracey Mason - sorry to hear about your recent diagnosis. I have contacted my GP to try to get an appointment. I'm currently taking codeine and oramorph and it is only taking the edge off. My physio says the problem is my whole arm is now seizing up which isn't good. I'm hoping to see the GP and get some kind of plan together 🤞

[Madge]

TinyLady I too am suffering with pain in my right shoulder/neck/blade. I thought perhaps as I type too much using my thumb it may be causing stiffness x the pain is excruciating at times even when I breath. I’m going to have reflexology with a massage of my hands arm and shoulder. Is every ache and pain down to MND??

all the best and hope you can get the pain sorted. I find getting to see these different people is so exhausting and I get anxious. Let us know how you get on.

[TinyLady]

Madge - that sounds so uncomfortable. I can't type with that hand any more so not sure if it could be linked. My physio said it is weak rotator cuff muscles. It is probably my worst limb now, but hard to tell.

I hope your reflexology gives you some relief xx

[shelly21]

TinyLady I found the shoulder pain the worst. I tried so many meds. There are patches eg: fentanyl but I know you have allergies.

Strangely I spent 9 months trying lots of meds but then when I couldn't use the arm the pain stopped.

Have they considered nerve pain meds like gabapentin and prevailing x