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    • #22468
      Eric Jensen
      Participant

      I am undiagnosed. I have an appointment with my local ALS Clinic soon. I have atrophy in both calves. Recently, I have experienced severe knee and ankle joint pain, as well as muscle pain, in the muscles remaining in my calves. I have a clotting disorder, so my use of NSAIDS can be used only sparingly. What medications/modalities have been effective in treating pain in joints and muscles in those with a NMD? Thank you 😊

    • #22470
      Carol
      Participant

      Very similar symptoms also undiagnosed. I take Baclofen which helps some. You should be able to take Tylenol. Best to ask doctor. Good luck to you. It’s a long terrible journey to wait through for diagnosis. Want to share journey I’m here.

    • #22471
      John M C
      Participant

      I was undiagnosed until 2 months ago after nearly 3 years of procedures, tests, scans, labs, etc… sure you know. I am diagnosed with PMA as I do not yet have Upper Motor Neuron symptoms. I have had significant pain through out the process and have been told multiple times that NMDs are painless. Not mine. My muscles ache constantly and the pain seems to affect those muscles/joints most greatly atrophied with more consistency, although I do also experience pain in muscles that are not yet as badly atrophied. The area of greatest pain changes though out the day and affects both muscle and joints. Definitely worse the more activity I have, but I am not ready to stop hobbling around with my walking stick and give up working. It makes sense to me as I am asking muscles to do things(walking and standing) that they no longer able to do. Other muscles are taking over and trying to help and do things for which they were not intended. Stress is increased to those muscles, the connective tissues and the joints. It has been explained to me(in this community) that motor neurons aren’t involved in pain – that’s sensory neurons. So, I get that MNDs do not cause pain, but I can still get around – tho with difficulty. I am not trying to do much other than work, which was not at all physically demanding prior to my symptoms.

      As for what helps, I have yet to discover the magic bullet. I am a pharmacist and have aggressively pursued treatments with my Dr. We have tried, cyclobenzaprine, gabapentin, duloxetine, diazepam, tizanidine and baclofen with no improvement. I currently take an NSAID (meloxicam) and mulitple Tylenol doses daily and tramadol as needed. I really am not sure if either one is doing anything as my pain continues, but I am reluctant to not take them. I also take tramadol as needed, but as it causes drowsiness I don’t get more than one dose in a day, and if there are after work/school activities I also skip it. I think it may help to a small degree… or maybe it’s the drowsiness! I have an appt with a Pain Mgmt specialist in October, so I am hoping they might have some other ideas. What does work for me is rest. I elevate my legs when I can. Massage is very helpful and I wish I could get one daily. At Physical Therapy I get stretched, but there is never time to stretch all the muscles that want to be, and my insurance makes it very difficult to get appts approved. I go weekly for 6 weeks, then wait 2 months to get approval for 6 more sessions.

      Ironically, I posted on this topic a couple of months back wondering what others had experienced. While I received plenty of responses there really didn’t seem to be many people with the same or degree of pain I (we) have. Eric and Carol: I would love to hear more of your paths, symptoms, etc. If others have similar experience, please share them. As you can probably tell by my rambling, sharing is very therapeutic for me! Perhaps it will be for you as well!

    • #22476
      Eric Jensen
      Participant

      Thank you Carol and John! I used the, “find,” option here and there were no results found. What?!? As John said, my calf atrophy has created strain on my knees and ankles. I have been calling my, yet not effected muscle, accessory muscles. Those, “left over,” muscles work quadruple time to ambulate me. I sweat, as if I ran a marathon, when I walk to the kitchen for a meal, lol. Unfortunately, both legs are effected, as well as my arms, now. I see my local Neuromuscular doctor in a month. I pray that I get direction for my care. I have tried Mobic, Flexiril, Tizanidine and Tylenol to no avai. Ice works as long as it is cold. Voltaren gel works for 15 minutes but I can only put it on four times a day. I am a “lumbar fusion surgery will correct your foot drop,” person. Surprise, it didn’t. I was put on narcotic medications after surgery and I know that they work to “mask,” the underlying pain. I do not want to take them! I am seeing interventional pain management and hope for an option such as a cortisone injections. Thank you both soooo much for your responses.

    • #22478
      John M C
      Participant

      Hmmmmm. The similarities continue. I had a neurologist recommended L4-S1 fusion done for foot drop as well. I have/had stenosis at multiple levels. As it turned out it was probably a good thing as it was difficult to convince anyone that there was more going on. I also find my self exerting to do simple thing like getting dressed. I get out of the shower and by the time I am dressed and ready to go I have a sweat going that makes me want to take another shower! Let us know if your pain appt leads to any viable options. I would like to pass it along to my Drs.

      MND that does not present in the typical manner is very difficult to diagnose, and takes a long time. The good news being that it also tends to progress more slowly. I am sure you know all this too. I hope you get answers quickly! As Tom Petty said, The Waiting is the Hardest Part

    • #22482
      Eric Jensen
      Participant

      John. My wife and I have read several studies, NIH(reputable), that involved unnecessary fusion/Laminectomy/carpal tunnel procedures, that were not the cause of the symptoms experienced. I believed, because I waited five months before proceeding with my fusion, that I had caused permanent nerve damage to my RLE. I had become “ok,” with my new normal. Fast forward to 3/2022. The weakness/atrophy/muscle cramps have spread to my LLE. I started to seek medical help. All providers, “I don’t think you have ALS.” Me, “great, then what is happening?” My new normal is that I will now need/rely on a wheelchair. Five months ago, i walked without my cane. As far as slow progression, whatever I have is fast. Too fast. My arms are now involved. I drop everything. I now get short of breath folding two towels. I’m scared and all I can do is “adapt,” and wait for my ALS Clinic appointment. Thank you for affirming your situation. I don’t feel alone. I wish you all the best. I will let you know what pain management says.

    • #22503
      Eric Jensen
      Participant
    • #22551
      Lisa Brown
      Participant

      Hi, I started with left foot drop. Walking with cane 6 months ago now in chair unable to walk. I have stenosis in the usual places and also am a “its the stenosis” person. Now my arms have atrophy, carpel etc you all know. My best pain management has been CBD oil with low THC content. I use stronger CBD gummies if sleep is required. I take at night before sleep.
      My fasciculations appear only if I overwork those areas affected ie, get in and out of vehicle more than 3 times in a day or even not doing any leg movements.

      I am lucky in that pain usually only presents itself when my legs and feet get super cold. (I have bad knees and as I don’t use them for walking now the pain is highly reduced) Gabapentin is good for the fascics.

      I have given up mostly on prescribed meds and gone totally alternate medicine including LeapXX which definitely ups the energy levels.

    • #22554
      Eric Jensen
      Participant

      Lisa,

      Firstly, I am sorry that you are experiencing the pain. Secondary pain, seems to be an avoided topic of discussion because of it’s, “ALS exclusionary nature.” Treatment of the patient is not only the disease but, all of the myriad if symptoms that disease causes. “Dr. Google,” has tainted some aspects of medicine. My daughters believe many things that appear on TikTok. Thank you for the advice on CBD. I know that there is many healing qualities that the marijuana plant provides. I am  recovering drug addict and I try to avoid any opiates. Thank you for sharing your story. God bless you.

    • #22559
      Angela
      Participant

      I have bulbar onset and atrophy in forearms and calves primarily. I have generally had no pain but I am retired and try to focus on being in the present. I meditate to reduce stress because I heard that it can advance the disease. I also focus on blending anti-inflammatory foods into my g-tube meals. Anecdotally, I skipped a night with my bipap and went to bed angry. I was in pain the next day having not slept well. I felt cramps in different muscles and arthritis like pain in my hands. I truly feel that good sleep and diet helps me. I wish you all peace and less pain.

    • #22560
      Eric Jensen
      Participant

      Angela. Thank you so much for sharing. I also believe that the mind plays an intricate part in the body’s pain. I have found that, “sleep hygiene,” (hate that descriptor) does effect my pain the following day. I have heard that meditation is a great modality as well. My atrophy has put tremendous strain on the supportive joints and ligaments, thus causing my secondary pain. Ibuprofen helps me sometimes. Again, thanks for sharing. May tomorrow bring you joy and less pain.

    • #22568
      Richard Maloon
      Participant

      I was diagnosed almost 3 years ago by a newly minted neurologist and had several MRI tests. you need to advocate for yourself. I am on Medicare, and they paid for all tests. I also went to Leahy’s clinic in Boston and verified the diagnosis. There are only two drugs ” approved” for ALS: Radicava 0ral ($$$$$$) and  Riluzole. I take riluzole.

      No cure, most persons die in less than two years, never reversed, ever.

      HCPs Treating ALS Patients | Radicava® (edaravone) | FDA Approved (radicavahcp.com)

      Write/talk to your local ALS clinic ASAP. Get your ALS  Score, called ALSFRS-R immediately. alsfrs-r score – Search (bing.com)

      be prepared to be frustrated a lot.

      best

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