Back Pain and ALS?

[jgerber123]

My wife with ALS has been experiencing back pain and tightness on and off for two years. It started before other obvious ALS symptoms began. Her legs are both weaker when the pain/tightness occurs and it generally follows walking (too far) or bending from gardening. Her walking is slow but much slower when she has the back tightness.

The ALS Physical Therapist tells us that it is part of the disease and there is nothing she can do. We only saw thie PT for 15 minutes as part of her first clinic.

I wonder if it is back pain is a secondary effect from an altered or uneven gait? I wonder if it can't be helped with PT? I realize that if the muscles are weak from ALS, they can't be strengthened. But what if it isn't due to motor neuron death? What if it is just back pain?

Anyone have any experience?

 

[ShiftKicker]

I experience back issues and pain due to spasticity- uneven gait and strain on one side more than the other. You are likely correct that it's a result of uneven gait placing strain on muscles that are overtaxed already. Spasticity will pull weaker surrounding muscles and likely cause misalignment as well. A pt who is educated in neurological issues would likely be able to help create either a stretching or mechanical (mechanical referring to how her body structure is put together) re-alignment program for your wife that can help mitigate back pain. I don't know if your wife also uses walking assistance that, while helpful, could be causing some imbalance somewhere in her gait. MND is a dynamic disease, so needs are always changing. It might be a good idea to reassess things like sleeping positions, walking aid and needs for cushioning and support when seated too.

A good pt is invaluable. I hope your local ALS clinic has one, but there are many who have extra training for helping folks with neurological injury and disease and are happy to work with you in creating a good and SAFE program of movement and stretching to keep comfort and function as long as possible.


~Fiona

 

[KimT]

I've experienced back pain even before my legs got weak. I think mine was due to reduced core strength and stretching the wrong way. I was able to break the cycle a couple of times with Oxy. Now my walking is "off" and the back pain has returned. I try to exercise in the warm pool daily.

Using a walker made my back pain much worse. Also bending over makes it worse. I mopped the floor yesterday and that was a mistake.

Even bending over a low bathroom sink can cause my back to hurt.

I agree that a good PT is invaluable and you need one who is properly trained and experienced.

 

[lgelb]

PT is an idea, and so is straight-up massage. Find an MT that will work with her (if you are not connected locally, you can do an online search for licensed MTs with various areas of specialization at the AMTA site; friends/family/docs/clinics are also resources). Some MTs will do a reduced rate for PALS.

Does she use a hospital bed? That could help as well as lying flat on weak muscles doesn't help. I would also make sure she is in supportive shoes with good [possibly aftermarket] insoles. Even in the warmer seasons, a low voltage heated mattress pad at the bottom might help the muscles at night.

ALS is part of it but there are definitely things to do to make it better.

 

[Redfish]

My wife with ALS has been experiencing back pain and tightness on and off for two years. It started before other obvious ALS symptoms began. Her legs are both weaker when the pain/tightness occurs and it generally follows walking (too far) or bending from gardening. Her walking is slow but much slower when she has the back tightness.

The ALS Physical Therapist tells us that it is part of the disease and there is nothing she can do. We only saw thie PT for 15 minutes as part of her first clinic.

I wonder if it is back pain is a secondary effect from an altered or uneven gait? I wonder if it can't be helped with PT? I realize that if the muscles are weak from ALS, they can't be strengthened. But what if it isn't due to motor neuron death? What if it is just back pain?

Anyone have any experience?

I have had lower back pain for 25 years, but it has increased significantly since I was diagnosed in October 2016. I have seen a chiropractor a number of times and PT but it has only provided temporary short term relief. I do regularly, use the stretching and yoga exercises they recommend, it helps. I may ultimately have a orthopedist give me a shot cortisone/steroid in my lower back. I've been thinking about this for 6months.