Back ache/pain with ALS

[ralsip]

Hi, was recently diagnosed with ALS in late January and had it confirmed by Dr. Glass at Emory earlier this month. So far symptoms include weakness in left hand, some light cramping in hands and legs, and just a touch of weakness in leg at times. Fasciculations started in mid December in left hand and moved to arms and sporadically in legs. Around the time they started I started having these aches/pain in my back, probably slightly above the center of my back and just slightly to the right side. This would come and go and initially I chalked it up to sleeping a week on a pull out bed because my wife had foot surgery and they initially went away when I went back to our normal bed. But they have come back in the last few weeks. Never had any back pain before but this really seems to zap my strength and I just want to lie down. They did an MRI of my neck early on in the diagnosis process (not the same spot I know) but neurosurgeon said back looked better than it should for 42. Maybe it is stress related as it seems to come on more at work (high stress but a desk job) etc. or if I go for a long walk. Was curious if anyone else experienced similar symptoms and whether it could be ALS related.

 

[ottawa girl]

I have been awake, and in pain, most of the night - with significant lower back pain. Never had it before. Thankfully, it's not every night. I believe it's due to my ALS - directly or indirectly. I cannot stretch it out ( feotal position ) on my own - but this kind of stretching seems to help. A little.

I have taken 2 10mg baclofen ( just started these meds) and 1 .05mg ativan. I am very dopey, but pain keeps sleep away. I share your discomfort.

 

[Mediasmart]

I have it now and then and mentioned it to my PT. He noted my posture hand changed a bit and my gait...As expected...was far different. So we worked on both and now it has been three months without.

 

[CGARS]

Best thing I ever did, was buy my own adjustable bed.
We have two queen size beds in the bedroom.
Slept like a rock ever since.
Casey

 

[ottawa girl]

Casey

What kind of bed did you get? I am looking.

 

[zoohouse]

My husband struggles with back ache as well. He has old back and neck injuries from years ago but managed those by keeping in really good shape. Now he has lost that muscle support to stabilize those compromised areas so the wrong position means pain. He is most comfortable in his PWC as he can change the positions as needed. We are suppose to receive his new bed today from pro bed and it will allow him to adjust his head and lower leg position, as well as roll him from side to back to other side. Will give a report on how it is working, but will have my fingers crossed that it improves his back and neck issues.

 

[CGARS]

I got mine at The Brick, it's a Serta, but they don't carry that one any more.
They have the Serta icomfort2, which is a step up from mine on sale right now.

 

[ottawa girl]

Thanks Casey.

We have a Serta... Trading my half up for a hospital bed... Sigh!

 

[CGARS]

I had a hospital bed for 6 months, absolutely hated it.
Only slept in it twice (my 10 yr old loved it)
The adjustable bed does the same thing, only way comfier.

 

[Dawood]

My wife has had back pain related to ALS, and other joint pain as well. As the muscles weaken, they don't support the bone and joint structures as good as they previously did, making the joints (including back and neck) more susceptible to strain. Also, ALS leads to more sitting, and poor sitting posture can lead to back pain. Her back pain has been a lot less since we determined the Invacare power wheelchair simply did not fit her right and forced the insurer to get her a Permobil, which has made a HUGE difference. Also, frequent tilting back in the wheelchair reduces the constant pressure on the lower spine from sitting all day.