Pain has increased.

KimT

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The pain is now interfering with my time in the pool. I can still walk, still do things with my hands and arms and my speaking seems very close to normal. My breathing is still pretty good and I don't get out of breath in the pool but the pain in my back and knees is getting much worse.

I can no longer go on the treadmill for my 5 or 10 minutes because of pain. I can still raise up on my toes (most of the time) and walk on my heels.

I'm not sure if the pain is being cause my increased inactivity or my floating in the pool. I keep good posture in the pool and basically straddle the pool noodle and paddle with my arms. Sometimes I walk in the shallow end back and forth. I'm not even keeping up with the 90 year old people and it's not because of weakness. It's because of pain.

Yes, I've lost strength but it is a very slow loss and all my muscles are at least a 4. They all started out as 5+, with the plus meaning much stronger than the average woman.

Pete was respiratory onset and extremely strong but I remember he had pain from the very beginning.

I can't take enough THC to help because it makes me dizzy and gives me heart palpitations. CBD and Tylenol are what I'm using along with topical THC. Today I broke down and took 1/4 of an Oxy and an extra Valium just to get through the day.

In my last MRI (which my primary care thought I might have a ruptured appendix) I noticed that I had mild scoliosis (which I've had for years) and mild degenerative changes in the lumber spine.

I ended up buying a very expensive office chair to replace my old very expensive office chair along with a posture foot support to help me stay in good form on the computer. Thank goodness for my lift chair.

Does anyone else experience this kind of pain along with slow progression?

Mayo Clinic cannot agree on the cause. The neuro thinks it's fibromyalgia, the rheumy thinks it's structural and the ortho thinks it's neurological.
 

KarenNWendyn

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Given your still reasonably good strength and neuromuscular function, it’s unlikely your pain is from immobility and lack of muscle ability to support the joints, which is what we would see in more advanced ALS..

Fibromyalgia is a real condition with diagnostic criteria, but sometimes it is also used as a catch-all term to account for non-inflammatory pain that can’t otherwise be explained. The fact is, non-inflammatory pain will result in most people when there is a cycle of poor sleep and fatigue. Causes of pain tend to be synergistic. So pain of any origin will intensify when depression, immobility, structural issues, neuropathic pain, and inflammation are added to the mix. It’s hard sometimes to tease out the various causes. And it’s hard to manage.

I’m sorry for your pain Kim, especially considering that it’s despite all your appropriate efforts to manage it. Unfortunately we still have a long way to go in effectively managing chronic pain.
 

Nikki J

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I too am sorry for your pain. I think I am similar in progression to you. I can’t toe or heel walk and do have some weakness in all extremities but I am reasonably functional. And no bulbar or respiratory. I don’t have pain with this at all unless you count cramps

i wish they had both explanations and answers for you
 

KateEmerson

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I unfortunately can't add any insight Kim just wanted to tell you I'm sorry you're going through this. Kate
 

affected

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Just sending you so much love Kim - pain is horrible to live with, I'm sorry 💙 💙 💙
 

pittsburghgal

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Kim, I want you to know that I am praying that you get relief from your pain. This disease is horrible enough without adding constant pain.

My husband is slow progression and now is having some neck pain from weakness of neck muscles. His neck is very flexed to his chest and tilted to the right. Other than this, he has been relatively pain free throughout the years (first symptoms of ALS in 2007). I really think there is something else going on with you in addition to the ALS. I hope and pray you can find relief.

Sharon
 

KimT

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Sharon,
I really appreciate the prayers. I think just about everyone, myself included, thinks I have what they called a co-morbidity but they just put different labels on it. I'm honestly thinking of going to Duke next Spring and get another fresh set of eyes to look me over. Already been to Hopkins, Mayo, University of South Florida and Shands at Jacksonville.
 

Kristina1

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Hugs Kim! I'm sorry for all the pain you are dealing with. I hope they can figure out the cause and treat it.
 

KarenNWendyn

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I'm honestly thinking of going to Duke next Spring and get another fresh set of eyes to look me over.
That sounds like a good plan. Hopefully you get some answers and some relief.
 

blitzc

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Kim, I too have knee pain but mine seems to be from my weakening leg strength as it only hurts with walking or standing.

I pray for comfort and answers for you! ❤🤗
 

jethro

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kim, wont hug you, pray for you etc etc, but i'll give you advice: if you didnt do emg recently, do it now. results will explain my advice.
 

Lkaibel

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I’m sorry about the pain Kim. Brian had a fair amount of pain with a much faster progression. I hope you get some relief soon.
 

notBrad

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What kind of pain and where? I had recurring pain playing softball and used a simple lateral brace that worked really well.
 
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