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    Hard to describe pain

    I'm getting increasing amounts of some kind of pain (I'm terrible at describing pain). Mainly in my worst affected limbs (left lower leg and left fore arm). Like a gnawing, pressing on a bruise type of pain. Sometimes it starts with a cramp type feeling, but other times just builds and niggles until it can't be ignored. Worse if I use the muscles at all.

    I'm guessing it is MND related. Is there some way to control this pain? It's got so much worse over the last few weeks and it makes me so tired.

    I take cocodamol, naproxen and a tiny amount of oramorph at night sometimes, but not convinced they help much with this pain. Any thoughts/ ideas?
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

    #2
    I find heating pads help with the muscle cramps in my worst affected leg and arm.

    Comment


      #3
      Originally posted by TinyLady View Post
      Like a gnawing, pressing on a bruise type of pain.
      🤔 Is it just localised or more widespread?

      If you see, or have access to, a Physiotherapist, I'd see if they can identify the type of pain by examining you.

      If the pain isn't responding to normal painkillers, it could be localised spasm or a deep cramp which, if it is, you could try magnesium supplements, but I'd ask for someone (GP, if not a Physio) to help identify the cause and type of pain, given the distress it's causing. xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Thank you both. I took some of my oramorph and put a heat pad on it which did settle it. I'm just a bit fed up of it, but don't like taking too many pain killers in the day.

        I'm seeing my private physio for a sports massage tomorrow. He normally helps it ease off, but I do wish I could stop it/ permanently reduce it. I think it's probably just angry muscles.
        Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

        Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

        Comment


          #5
          Is it spasticity? I get a lot of muscles locking up in my calves/thighs and hands. It locks the muscles up like cramps, but ten times worse and will not let go/relax. I have to stand up to make it stop in my legs, or grab my thumb/fingers and pull them back in my hands. It got me up multiple times every night before I started baclofen and magnesium supplements. Now they are much easier to handle.

          Over time spasticity can shorten tendons and require surgery to relieve the pain.

          Comment


            #6
            Johnny5 - that sounds incredibly uncomfortable. Glad you are finding a way to manage it better. Thankfully mine isn't like that. I can still move things but it is increasingly uncomfortable. I am apparently hypermobile so tend to be extremely flexible (on the bits that work anyway!).

            I'm seeing my physio this morning, but he isn't experienced in MND (just does an extremely good sports massage) so I will ask him if he has any ideas. Heat and morphine helped though 🙂
            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

            Comment


              #7
              TinyLady


              Thomas takes Quinine Sulphate 300mg for his legs, a cramping jerking type pain.

              It has almost stopped them. Heat spray also can work temporary.

              Hugs
              Donna

              Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

              Comment


                #8
                DeeH - thank you for the suggestion. I think I have both the cramp type pain and muscle pain too. I saw my physio and the sports massage has helped a lot. He said it is because my muscles are working so hard now and get fatigued and sore.
                Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

                Comment

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