- Joined
- Nov 18, 2014
- Messages
- 5,021
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
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.
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.