Exercise and Physical Therapy experience

[KimT]

I decided to write a couple of things I've experienced since my diagnosis with the hope that it might help someone else avoid doing what I did.

First, I'm LMN dominant and progressing very slowly.

In 2018 I was still walking a mile a day but couldn't get my heart rate in the zone (I was previously a runner.). So one day I went to our condo's gym and started walking fast on the treadmill. Still my heart rate wouldn't rise. Then I decided to use the incline and cranked it way up. It worked for the heart rate but not for my right knee. After that my right knee started to hurt. Within months it was slightly contracted and I was limping. My neurologist ordered an MRI and it only showed tendonitis so he ordered PT. I found a PT who was experienced in neurological disorders and I explained to her that I wasn't looking to build strength, just ease the pain and, maybe, be able to straighten out my knee. After six sessions, it felt much better, I could straighten my knee and it only hurt off and on. I no longer worried about getting my HR up on the treadmill. From that point on, I used the pool. I still walked about 1/2 to 1 mile a day but easy and on a surface that was joint friendly and with good running shoes.

Fast forward a couple of years and I had atrophy in that knee. Still the pain was off and on. My neurologist ordered another MRI of the knee and this time there was damage to tendons, ligaments and the beginning of bone-on-bone. He said the atrophy was causing this.

All this time I had been favoring my right leg and one day the bottom of my left foot started hurting. It felt like people describe plantar fasciitis so I went to a podiatrist. The podiatrist said it was definitely plantar fasciitis and gave me a shot of cortisone with some other numbing meds thrown in. It really didn't improve. A few months went by and I decided to go to a different podiatrist. He ordered an MRI because he suspected it might be both plantar fasciitis and tarsal tunnel syndrome since the pain had migrated. He, also, gave me a steroid shot. His shot helped some but it never got better. Then it got worse and the only thing that helped was Gabapentin and ice. I went back to him and he said he didn't think the pain was originating from my foot and he thought it was secondary to ALS (he had spoken with my neurologist with my permission.). I decided to give PT a try for my foot. It was a disaster. At first, I thought it was helping but the PT said he thought I needed to strengthen my foot for better balance. Well, what they say about strengthening any muscle that's been affected by ALS is true. Don't do it. Again, the pain ramped up after the first session. I stopped PT and resorted to using ice.

So I just lived with both pains through the pandemic until today.

I was standing at the refrigerator filling my water glass and my knee just gave out. It wasn't from weakness but from pain. Last time it was strength tested it was a 4+. The pain today was horrible. I couldn't walk, I got to my lift chair, took an Oxy and iced both my knee and foot. After the Oxy kicked in the pain lessened enough for me to walk again. I'm not walking far and icing every 30 minutes, both knee and foot.

My primary care wants another MRI of my knee and the neurologist wants me to go to one of the best ortho docs in Orlando. I'll arrange for all that to be done ASAP.

In the meantime, I'm glad I have both a transport wheelchair and my PWC. I have two meetings in the condo this week and don't want to miss them. Also, thank goodness for Oxy and Valium.

I just wanted to put all this out there because, for some PALS, pain is very real and messes with the quality of life. Oh, when my knee gave out, I grabbed the refrigerator door on the way down and it was with the arm that has had a torn rotator cuff from before ALS. Ouch, again.

 

[Tomswife]

Kim. Thank you for sharing what you have experienced and continue to encounter. You have been through a real and dangerous struggle to walk and just move.
ALS is a baffling, sneaky, horrible dusease. While you have experienced so much pain , my PALS has not really been in pain since his DX. His failing has not been painful. He just keeps failing.
Since his limbs are becoming stiff / paralyzed he does have some pain if those body parts are pressured, since he is bedridden.

 

[KimT]

I know quite a few slow progressors who have significant pain and not just from spasticity. I still have pretty good strength (4s) in all areas except my left hand. Some areas still 5s. Mayo has ruled out all co-morbidities for the pain. My joints are suffering from wear and tear because the adjacent muscles atrophy and my unwillingness to use the PWC. I can walk like a normal person. You would never know anything was wrong but it hurts like heck. When I'm tired, I limp. Yesterday, I got an idea what it feels like to not be able to walk.

Today, with the help of ice and meds, it's quite a bit better. But I'm staying off it except to go to my meeting at 11 am.

This disease is just exhausting. Last year was the first year I've felt out of energy. I had lots of energy early on.

 

[Hal]

Thanks for sharing … prior to my diagnosis I was dealing with knee and shoulder issues from years of playing sports and being pretty active. I’m still able to walk a lot, but I’m constantly wondering if my knee pain and swelling is related to old injuries or ALS

 

[KimT]

On my MRIs it did mention "reduced bulk" and I never had knee issues prior. I was so small so there was no unusual stress on my knees. The first MRI showed good spacing but the last showed some bone on bone. The only way that could have happened is the atrophy and the fact that I'm still walking. When I sit most of the pain goes away.

My foot is a different story. It hurts any time I'm not icing it. Gabapentin helps. Once I fall asleep, I can sleep for at least six hours before icing it again and, sometimes, I don't need to ice it until the next morning.