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Stiff joints

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    Stiff joints

    Hi lovely people,

    I'm just wondering what meds people take for stiff and painful joints. I can't move my legs at all and in the mornings my knees and ankles are so painful.My hubby is getting used to being sworn at when he moves me!! At my last clinic visit the palliative care consultant mentioned something ( can't remember what it was called) but said it might cause tummy upsets. I take blood thinners that can have the same effect so am wary but I guess it's trial and error.

    I know it's probably time for a profiling bed and am wondering if an air alternating mattress would help this.

    love Debbie x😘🤗

    Debs I doubt this will be helpful but I am currently using an ibuprofen gel for a stiff sore ankle joint from the spasticity, it might not be enough for what you need but I can tell if I havent applied it so its making some difference. There are various topical creams? xx
    Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.


      Originally posted by Deb View Post
      At my last clinic visit the palliative care consultant mentioned something
      Did they doctor have an opinion as to the cause of the pain Debbie - is it muscular, bone or nerve pain; do the joints swell? Have you a physiotherapist?

      Because you take blood thinners, does that mean you can’t take anti-inflammatory pain medication?

      Without knowing what causes your pain, IDK if an alternating air mattress would relieve it 😥 do you do any range of movement exercises on those joints; have you tried putting a pillow under your knees and/or ankles? xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


        Thank you for your replies Zante and Ellie

        You're right Ellie that I can't take anti inflammatory medication whilst on blood thinners. I have passive physio during the day and my legs don't hurt then so I'm thinking it's because they aren't moved in the night.

        I have a clinic visit soon and a home visit from the physio so I have lots of questions. Xx


          Deb I'm in a profiling bed and on a lovely air mattress... but I still get stiff and sore ankles and knees. Not every single morning, but especially after busy days and very deep sleep where I don't move at all. It was worse BEFORE I had the profiling bed, but still happens.

          I have very little voluntary movement in my ankles, my knees have a bit more. So I assume the stiffness and pain is caused by total lack of movement all night and especially if they get cold. During the day I try to move them/ get carers to move them and gradually it eases off.

          No idea if this is an MND thing and sorry can't help with medication either. But hope my experience despite profiling bed might help you understand what might help you.
          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!