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    Early stage continuous aches and pains

    Hi

    Ive been on this forum before but my pma worries have gotten worse. Im on anti depressants but im still struggling.

    My last emg was clear but it was over a year ago and my atrophy, weakness and pain has got much worse since then. Its also spread to my shoulders which werent weak back then. Neuro only tested my right side. Im dreading what the next one will show as my left side has now overtaken my right for weakness and pain. My arms are now stick thin and i can feel the bones in my shoulders. I am unsure if i now have clinical weakness. I see the neuro again on the 21st June.

    My neuro told me last time i only had lmn signs so i think mine may be pma and slower progressing.

    Are aches and pains a symptom? Ive read its about failure but surely in the early stages the muscle aches as only some of the motor neurons die.

    Im at the stage where My arms ache continuously, and my shoulders ache with the weight of my arms. Its like the weight of them are pulling on my shoulders. They have progressively got worse to where anytime i use them they ache as soon as i lift them and i cant do anything for very long at all. I cannot lay on my shoulders at night as it causes pain. I dont know if my shoulder muscles are no longer supporting my shoulder joints .

    I keep reading that pain is not a symptom until later but im in quite a bit of pain. The moment i lift anything with any weight with my arms such as a full kettle i get a pain around my elbow and biceps which causes me to wince. I fear that one day i wont be able to lift them anymore.

    Can pain be an early symptom. im not able to do normal things anymore without pain. Cooking hurts, gardening hurts, doing work hurts. Afterwards i have to rest due to the aches and pains. All because my arms are so weak.
    Last edited by Shepster34; 29 May 2022, 20:12.

    #2
    Shepster34 Honestly Paul, after 3.5 years of posting on this forum over both of your profiles, I don't think there is much more that we can offer you, only to say that the Neurologist should be able to answer all of your questions next month.

    I wish you well.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      Thanks Ellie

      i know im a pain. Im sorry, i just dont know where else to turn. The pain is a constant reminder what im facing. My arms have progressed to where im not able to function in my day to day routine anymore. I cant hold my grandson properly as my arms arent strong enough, it breaks my heart.

      I know its been quite a few years but i think its quite slow progressing.

      i know it will show on an emg eventually. Probably on my next one. i know my body and my arms are getting so much worse. Its spread to my shoulders now and they are getting worse too. Every month i get a little worse. I do believe its slow progressing but im now at the stage where im unsure how long i can continue to work. I cant do much with my arms as they ache when i use them so alot of my daily routine is out of the question.

      Comment


        #4
        I am not going to debate with you Paul but what I will say is have a clear plan for your appointment, write down your questions and the replies.


        You have posted on enough forums by now to know that when motor neurons die, function failure happens so, in saying things like:
        Originally posted by Shepster34 View Post
        Cooking hurts, gardening hurts, doing work hurts.
        then:
        Originally posted by Shepster34 View Post
        I cant do much with my arms as they ache when i use them so alot of my daily routine is out of the question.
        you are not describing function failure.

        But, as you know, nobody here is a doctor who can can examine you, nor give a qualified opinion.

        You don't have long to wait for the appointment.

        Best wishes.






        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Hi Ellie.

          yes thats the bit im unsure about. Im wondering if only a few muscles are atrophied at present. Could i ask how your arms atrophied and if there was a stage where your arms functioned but were weak?

          Comment


            #6
            Hello Shepster, Chris my husband, had no pain at all. Put simply things stopped working. Couldn't walk, couldn't grip, couldn't lift. Muscle wastage happened after that.
            Chris hasn't googled his condition ever, nor visited this forum. He makes the best of each day and gets on with life.
            I wish you well.

            Comment


              #7
              Sorry about your husband.

              this the bit i dont get. Everywhere states failure of a muscle but surely thats the end game. Surely a muscle like the bicep or the thigh muscle doesnt just switch off overnight. Its a progressive weakness that slowly dies and causes weakness over a certain length of time. So during the middle phase why cant moving an arm just be difficult or hard rather than impossible.

              same with the diaphragm. Its one muscle, does it just fail overnight, no, it progressively gets worse causing respiratory failure. Isnt that the same with all muscles in mnd? It takes time as the neurons die, the muscles weaken, the muscle gets thinner and everything feels harder to do but not yet failure of the complete muscle.

              Comment


                #8
                here we go again..........

                Comment


                • The thing is to do as much as possible before you get bed bound. It may be painful but at least you have the opportunity. After life comes an awful lot of death.

                  Comment


                    #10
                    My arms are immobile. I’ve never had any pain at all.

                    Shepster34 Strongly recommend you type out a long list of all your questions, print two copies. Give one to the neurologist at your upcoming appointment, listen to the answers and write them down on your copy. No one here is able to verify your theories about how muscles become atrophied.
                    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                    Comment


                      #11
                      Originally posted by PeterPan View Post
                      My arms are immobile. I’ve never had any pain at all.

                      Shepster34 Strongly recommend you type out a long list of all your questions, print two copies. Give one to the neurologist at your upcoming appointment, listen to the answers and write them down on your copy. No one here is able to verify your theories about how muscles become atrophied.
                      Thanks Peter

                      mine is more of an ache and then pain in my joints when lifting anything with weight. It makes me wince.

                      just read your blog, very informative, sorry you are struggling a little now. Good to see you have been helped by all the associations along your journey. That worries me as my wife works and will need to as we are only young and have a mortgage

                      Comment


                        #12
                        Originally posted by Graham View Post
                        The thing is to do as much as possible before you get bed bound. It may be painful but at least you have the opportunity. After life comes an awful lot of death.
                        We have a holiday booked to Australian in october, i pray i am still able to use my arms by then.

                        Comment


                          #13
                          Shepster34 Paul, please be aware of your audience.

                          There is nothing to be gained for you in continuing to post, all it does is upset us - show kindness and compassion please...

                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Shepster34

                            Please bear in mind that some of the people responding on this forum may be using assistive technology to type. It may be hard work for them - and frustrating when you are not taking on board their advice. Please can you respect their requests.

                            This is from a US forum...but it contains some good advice for people who are worried they might have MND/ALS but do not have a diagnosis...

                            http://https://www.alsforums.com/com...ymptoms.26591/

                            There is some important advice on there.

                            Comment


                              #15
                              All

                              Please accept my sincerest apologies if i offended anyone in this thread. I certainly didnt mean to offend with anything i wrote. This forum is a great resource and outlet for me so i am so sorry.

                              Comment

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