Back pain

[nunhead_man]

Good evening all

Before anybody says it, I know that motor neurone disease itself does not cause any pain.

But in my experience when muscles stop working because the motor neurones that drive them die then some of my muscular functions are unbalanced which leads to aches and pains.

I spend quite a lot of the day on my feet since my legs are unaffected at the moment although I have minor leg fasciculations and about two weeks ago had a sharp pain in my lower left back. I spoke to my general practitioner about this and we wondered if it was some sort of urinary infection with the pain coming from my urinary system or my kidneys so we've tried seven days of antibiotics and he has checked my urine.

Having just finished the seven-day antibiotics course I'm back to getting back pain again - not as acute as it was 10 days ago but more of a dull ache and now on both sides.

And the urine test was negative in the sense it didn't grow any sort of cultures or show any other type of infection.

Have others had this kind of difficulty as motor neurone disease developed?

Best to all

Andy

[Terry]

Hi Andy;

Many of us do get lower back pain due to posture weakening muscles Etc.

What concerns me is that the antibiotics seam to have taken the pain away, so that would point towards it not being muscle related. I think that it is probably your kidneys again but I'm no expert.

Make sure you're drinking well, this helps clear them out.

Hope you get it sorted.

Love Terry

[nunhead_man]

Hi Terry

Many of us do get lower back pain due to posture weakening muscles Etc.

Ah - okay - well it is not really but you know what I mean :-)

I'm tasked by my neurology team to drink 2 L of water a day so my kidneys are generally swimming.

And I'm sorry I was not clear but the pain in my kidneys was not stopped by the antibiotics I had whilst I was taking the course

So having had this exchange I guess is now that it is motor neurone disease what dun it.

Thanks

Andy

[Kayleigh]

Hi Andy,

I get pains in my legs, which is where I am currently most affected by MND. Your explanation of how MND indirectly causes pain makes sense to me, because as far as I am aware I wouldn't get leg pains if I didn't have MND.

Best wishes,
Kayleigh

[Terry]

Hi Andy;

I guess you are taking ibuprofen on a regularly to reduce inflammation and help relax the muscles.

Don't give up on it and see what else your doctor has to offer.

Love Terry

[Barry52]

Hi Andy,

Like you I also experience back pain and it is sometimes lower or between the shoulder blades. I’ve had mri scans to rule out other causes but I am told it’s down to posture. The problem has worsened since I became reliant on a walker but I can’t manage without it so I guess it’s catch 22.

Best wishes,
Barry

[nunhead_man]

Hi Terry,

And thanks Barry

I guess you are taking ibuprofen on a regularly to reduce inflammation and help relax the muscles.

Things I did not know number 57!

In fact I'm not taking painkillers as you describe although weirdly as I suffered from gout quite a long time ago I have some old anti-inflammatories which I will now experiment with - if it means anything to you it's called Indomethacin and is a rather old-fashioned tablet with the risk of liver damage but I have always tolerated it well.

It is strange because for a long time I've worked at my desk standing up to improve posture and maintain mobility and the pain in my back is certainly intermittent and helped by sitting down

Best,

Andy

[Terry]

Hi Andy;

Be careful of your liver as Riluzole also puts a load on it. I would be tempted to try over the counter Ibuprofen regularly for a couple of weeks and see if that does anything. Might be good to contact your doctor to see if that's safe.

I always found standing still or walking slowly for awhile gave me back ache and had to move fast or crouch down to keep it moving.

Love Terry

[matthew55]

I get pain in my fingers of my right hand which is the most advanced wasted.

[shelly21]

I am starting the bowen technique this week. Its to help with my hip & shoulder pain due to waisting muscles.

I also massage using coconut oil with is good for muscles.

I also think passive physio helps me. Basically someone moving the arm, leg etc so that I get a range of movement going.

[Ellie]

I am starting the bowen technique this week.

Interesting Shelly, let us know how it goes please. I hope it isn't too painful for you 🤞🤞

I had (have) bad muscle wasting around my scapulae and my upper humerus-humerus head area and had quite bad paid. I even tried morphine but what took away the pain with the most success was nerve blocking injections. Lidocaine was injected into local nerves in my scapula area and blocked pain signals for a few months, before I had repeat injections. I also had steroid injections near the humerus head. Something for you to bear in mind if necessary.

I am mostly naturally pain free now as ligaments, muscles and joints have found a new equilibrium.

Good luck with the Bowen technique, hope it works for you. xx

[shelly21]

Ellie I will let you know. I have had exactly the same injections many times in my head as I suffer with occipital neuralgia. It did give me relief so thank you i might look into it.

I found a series of passive physio excercises on you tube. A husband & wife team. This really helps my partner as he can be nervous with the hands on elements etc.

My physio is not hands on in fact in 5 months since diagnosis I have not had one session of physio.

[matthew55]

Be wary of see exercise especially in later stages.

[shelly21]

I understand that Matthew. But I'm still managing to walk. Range of movement helps with joint stiffness.

I'm sort of mid way.

[matthew55]

It's a very fine line. I have to take care not to over work my left hand during the day or I can't use it in the evening. For th the dirty minded I used my right hand!😉😂😁😍xx