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Gillette
12th May 2019, 15:10
Hi everyone,

My ALS started in my legs and has started to affect other parts of my body. My arms have become considerably weaker and I am unable to reach out more than a few inches. When I try to lift my arms or reach out I am getting pain in the arms.

I'm wondering if anyone else has experienced pain in a similar situation?

When I was given the diagnosis, I was told that MND is not a painful condition (except in a couple of situations), so I thought I would see if this pain is unusual.

martin
12th May 2019, 15:54
I haven't experienced pain but I have loss of control in my arms and legs.

Kayleigh
12th May 2019, 16:30
Hi Dina,

I have read on the MNDA website that sometimes MND patients get pain from stiff joints, cramps, and pain that is not directly related to MND.

Love
Kayleigh

Ellie
12th May 2019, 17:45
Hi Dina,

Sorry you've pain.

The process of motor neurons dying and associated nerve damage in ALS/MND isn’t painful and I can only think this is where the ‘no pain’ comes from, but most, if not all, of us will experience pain as the disease progresses, notably in our limbs and neck.

This may be due to cramp, spasm, change in muscle tone making joints less supported, poor mobility, change in posture etc. and different causes will have different remedies - it may be massage, heat, exercise, medication, support braces, positional or a combination of these.

Do you have a physiotherapist who can assess you? Often GPs just write a script for pain meds, when other meds or solutions might solve the root cause of the pain.

When my arms were going, I had pain in muscles around joints because of low muscle tone not holding the joints in an aligned position. Physiotherapy and hydrotherapy gave me much relief.

Good luck.

Love Ellie.

Gillette
12th May 2019, 19:13
Hi Kayleigh, hi Ellie,

Thank you for your replies. I thought I would ask if anyone else gets anything like it.

The pain seems to be along the muscles, rather than around or near the joints. I have the physio coming to see me in 10 days so I'll talk to her about it. And I'll be at the MND clinic a few days later so can mention it there, if need be.

Hi Martin,

Yes, my legs have gone completely and now my arms are galloping along as they're in a hurry to reach the same state!

JAY TEE
13th May 2019, 21:12
Gillete sorry you got pain. I was formally diagnosed with ALS MND in few days time 5yrs ago and was 70 on Saturday. My MND all down my left side. Before diagnosis I had pain in my left hip and just assumed to long in the front row. Luckily can use arm a bit to grip sit standing hoist when being lifted in out of bed into wheelchair which sit in all day. Best wishes John

Gillette
13th May 2019, 23:23
Hi Jay Tee/John

Congratulations and a belated happy birthday.

I was diagnosed six months ago. The pain in my arms has only recently started. It seems to be as my arms got weaker, the pain got stronger. I can no longer use either of my arms to help pull me up.

nunhead_man
14th May 2019, 09:52
Hi Dina

My take to kind of add to what Ellie has said is that motor neurone disease is no respecter of human physiology in that it sometimes takes out one of an opposing pair of muscles, or at least one of the pair becomes weaker than the other - so then when I try to do some for which I have muscle memory - e.g. lifting something, something goes twang leading to aches and pains.

An example of a matching pair could be the bicep and tricep in my upper arm where the bicep lifts my wrist and the triceps resists my pushing down my wrist - my left bicep is more wasted than my left tricep and so I get aches and pains in my upper arm

The biceps and triceps act against one another to bend and straighten the elbow joint. To bend the elbow, the biceps contracts and the triceps relaxes. To straighten the elbow, the triceps contract and the biceps relax.

See [Figure 1] - https://www.ck12.org/book/CK-12-Life-Science-Concepts-For-Middle-School/section/11.10/

Does that help at all?

Warmly

Andy

Wailywoo
14th May 2019, 11:26
Hi Gillette,

Just thought, while I am on here that hubby is getting weaker in the arms (already one leg not working at all and the other weakening) and has difficulty lifting his porridge bowl up into the microwave. He experiences pain in his shoulders and the back of his neck as his head is apt to drop to his chin on his chest all of the while he is "walking" about. He has had this for a while now and the doctor prescribed ibuprofen gel, but it didn't help. I was told that a warm compress like a lavender pillow might help a while back, so could be worth a try?

I hope you get some relief from it, as there is nothing so wearing as pain.

So the answer to does he get pain is yes he does :-(

Wailywoo x

Gillette
14th May 2019, 11:39
Hi Andy,

Thank you for your explanation. It makes a lot of sense. I just need to figure out which muscle is not playing nicely so that I can curse and swear at it.

Gillette
14th May 2019, 11:42
Hi Wailywoo,

Thank you for your comments. Luckily I don't have the pain all the time so it's nowhere near as wearing as it could be, thank goodness. I shall remember your tip about the lavender pillow. Thank you.

Deb
14th May 2019, 15:28
Hi Dina,

So sorry you're in pain as there is enough to cope with. I dont know if this is any help but when I was still trying to walk I had alot of pain in my hip, knees and back but now I am in a wheelchair/recliner it seems to have eased. Resting with my feet high also helps but that's difficult to do with your arms.

You made me laugh by saying you were swearing at your muscles because I often do that to my legs... in fact all our family do !

Love Debbie x

nunhead_man
14th May 2019, 16:17
Hi Dina


Thank you for your explanation. It makes a lot of sense. I just need to figure out which muscle is not playing nicely so that I can curse and swear at it.

Thank you for your thanks

Elsewhere I have been talking about trying to sort out some way of saying goodbye to bits of me - I am still thinking about it more.

I will probably finalise some sort of protocol for me whilst I am on our yoga retreat in early June - then report back but I think it is going to involve some sort of meditation over that bit of me that is now not working and will never come back and may involve both swearing and tears.

And it may be worth your while getting onto the Commend study that uses CBT to help people come to terms with their MND - I attend the Patient/Caregiver Advisory Group Meeting - formally this is"A feasibility study and randomised controlled trial of acceptance and COMmitment therapy for people with Motor nEuroN Disease (COMMEND)"




Warmly

Andy

Gillette
14th May 2019, 16:47
Hi Andy,

I hadn't heard of the Commend study before. I've had a quick shufti at the webpage about it but will probably read it more carefully and give it serious consideration.

Doug Carpenter
14th May 2019, 17:40
Hi Dina

Yes, do bear the COMMEND study in mind. Andy, Barry and I are involved in various of the committees overseeing it. Although it's still in the trial phase, I think the principle is a good one.

My overall feeling from today's meeting is that it is going well.

Doug

Gillette
14th May 2019, 18:26
Hi Doug,

Thank you for your comments about COMMEND. When I looked on the website earlier today it seemed to say that they are not recruiting at the moment. The recruitment it mentioned was for something in 2018.

Barry52
14th May 2019, 23:59
Hi Dina,

As Doug mentioned the trial is going well. They are training more therapists and recruiting more clinics so it is likely they will need more patients during the next 12 months.

Best wishes,
Barry

nunhead_man
15th May 2019, 10:13
Good morning,


Andy, Barry and I are involved in various of the committees overseeing it

Ah! Putting forum identities, together with voices from yesterday's meeting!

It sounds like 1 of the centres is already recruiting but said, I think it will take a couple of months or so before the trial starts - but well worth registering with your care centre - which one you registered out so we can check if the trial is going ahead there?

Indeed, you asking might persuade them to go ahead with finding the money to be involved with it

Warmly

Andy

Gillette
15th May 2019, 11:53
Hi Andy,

My MND centre is the Salford/Manchester one at Salford Royal Hospital.

Barry52
15th May 2019, 17:26
Hi Dina,

I’m sorry that Salford is not one of the centres involved with this trial but as Andy has said it is being rolled out and those units that have committed resources to this trial are being supported. Training suitable therapists is an ongoing problem.

Andy,

As you have mentioned it is not always easy to make the connection with forum members and those who are involved in steering groups especially when we have Skype links, telecommunications and face to face meetings.

Best wishes,
Barry

Gillette
15th May 2019, 18:02
Hi Barry,

Thank you for checking. :)

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