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Joint pain and HCM

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patricia grall Find out more about patricia grall
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  • Joint pain and HCM

    Hello.
    I would like to know if others are having difficulty with severe joint pain on occassion. I have problems with my wrists and my ankles. It comes and goes. I was told by one heart doctor that is has to do with my HCM disease. That the damanged heart releases some type of petides (?) that settle in the joints and can be very painful, or increase the pain that I may have from mild arthritis. I am not able to take any Ibuprofen products and Tylenol is not relieving the pain. Heat does help, but some days I can not walk well at all due to the pain. Can someone please shed some light on this? Is it heart related? Thank you very much.
    Pat Grall
    Hi I have had an ablation and have gone from hypertrophic cardiomypathy to dilated cardiomypathy. Ug. But I do OK

  • #2
    Re: Joint pain and HCM

    Pat, Sometimes, you can be holding a little fluid and around those areas of joints, it can cause increased pressure and tenderness. Just a thought, check with your doc. Linda

    Comment


    • #3
      Re: Joint pain and HCM

      I seriously doubt that HCM has anything to do with joint pain. I would recommend seeing a rheumatologist
      \"It is not length of life, but depth of life.\"

      Ralph Waldo Emerson

      Comment


      • #4
        Re: Joint pain and HCM

        The fluid may be an issue, however it may be unrelated to HCM.
        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment


        • #5
          Re: Joint pain and HCM

          What you are experiencing has absolutely nothing to do with HCM, Ive looked through the book by Dr. Maron and have not found anything on what you are experincing, and i can whole heartedly assure you that Dr. Maron would not have left anything out if it hadd something to do with HCM.

          Take Care

          Patrick Von Mende

          Comment


          • #6
            Re: Joint pain and HCM

            and one more thing I'd have top agree with Cynthia about the rhematologist, best of luck to you!

            take care

            Patrick Von Mende

            Comment


            • #7
              Re: Joint pain and HCM

              Patrick - Please do not be so fast to dismiss what others are feeling. There is a great deal we still do not know or understand about HCM. The book you are refering to - I co-authored, I can assure you that there is not ample knowledge at this time to be 100% sure that other symptoms are not related to "HCM" as we know it.
              Keep an open mind - that is where answers come from.

              Best wishes,
              Lisa
              Knowledge is power ... Stay informed!
              YOU can make a difference - all you have to do is try!

              Dx age 12 current age 46 and counting!
              lost: 5 family members to HCM (SCD, Stroke, CHF)
              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
              Therapy - ICD (implanted 97, 01, 04 and 11, medication
              Currently not obstructed
              Complications - unnecessary pacemaker and stroke (unrelated to each other)

              Comment


              • #8
                Re: Joint pain and HCM

                I don't know about joint pain even though i have arthritis in several joints in my body, it was there before i was diagnosed with HOCM so i don't know , I did go to the doc about the pain i have in my right foot when i extend my toes it feels like my toes are tearing when i extend them, he said the only thing he could think that was doing that to me is poor blood flow to my skin tissue, i know it causes a great deal of pain that they can't do anything about other than me rubbing my foot when it hurts me

                Take Care
                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Re: Joint pain and HCM

                  Hi everyone, It has been a while , sorry but things have been busy . I try to read but do not get back to posting as I would like. My brother in law did great with his valve repair instead of the valve replacement. He calls me his coach for open heart recovery. He seems to require a lot of TLC and pep talks so that has kept me busy; my sister finds care giving a challenge emotionally. I wish to comment on the joint pain . I recall posting that I for one had much more joint pain and at times severe difficulty with mobility before my myectomy. To reiterate a bit ,it is not nearly as bad as it was prior to surgery and inspite of the dreadfull cold weather up here and my dx. of severe degenerative joint disease , overall things are better. It very possibly is a combination of factors that have helped. I believe circulation is a major factor ; no evidence just one of my thoughts. I also recall that Dr. Marty Maron shared with me that one of the first individuals who had a myectomy at NEMC was also experiencing severe difficulties with mobility prior to his surgery and has done a turn around since the operation. So who can say . Lisa if you talk to Marty before I see him 2-24- 2004 please ask him what he thinks . I still have a ways to go in the limber department but certainly it appears that some restoration is coming along. Well just wanted to add my insight , hope it helps. Take Care All.. Pam
                  Dx @ 47 with HOCM & HF:11/00
                  Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                  Lead failure,replaced 12/06.
                  SF lead recall:07,extracted leads and new device 2012
                  [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                  Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                  Genetic mutation 4/09, mother(d), brother, son, gene+
                  Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                  Comment


                  • #10
                    Re: Joint pain and HCM

                    I didn't get the impression that Patrick was being closed minded. He was simply referring to Dr. Maron's book. It seems evident that this subject of joint pain wasn't mentioned? I don't know. I haven't read the book. I think Patrick was just giving his opinion. There are several different reasons for joint pain. I for one, have osteoarthritis in my hand. It has never crossed my mind to connect this with HCM. I was referred to a rheumatologist for the diagnosis years ago. I'm sure there are many maladys that could very well be significant to HCM. However, there are many that are not. Just giving my opinion here.....I think sometimes it's easy to associate something else going on in our bodies with this.
                    \"It is not length of life, but depth of life.\"

                    Ralph Waldo Emerson

                    Comment


                    • #11
                      Re: Joint pain and HCM

                      In my studies so far I have noticed that HCM has the largest variety of symptoms than most diseases. The last time I was with Lisa and Linda down here in Florida I learned that the way my scars heal very well could be associated with the HCM. Last thing I would think to blame it on.

                      I've also been diagnosed with other diseases like Crohn's and also have hypoglycemia so there are times that when one part of my body shuts down the rest tends to follow suit. There are days I get so confused about what is causing what because I am not sure which dr. to call!

                      Just because no one else seems to have the symptom you could be that .0001 percent that gets that side effect. I just wish my odds would end up on the lottery than with a disease and its symptoms!

                      Mary S.

                      Comment


                      • #12
                        Re: Joint pain and HCM

                        Originally posted by Toogoofy317
                        In my studies so far I have noticed that HCM has the largest variety of symptoms than most diseases. The last time I was with Lisa and Linda down here in Florida I learned that the way my scars heal very well could be associated with the HCM. Last thing I would think to blame it on.
                        Mary S.
                        Mary, what do you mean by that? How do your scars heal?

                        Reenie
                        Reenie

                        ****************
                        Husband has HCM.
                        3 kids - ages 23, 21, & 19. All presently clear of HCM.

                        Comment


                        • #13
                          Re: Joint pain and HCM

                          Im sorry i didnt realize that i was coming off as not being open minded i was simply stating my opinion, and what i had found looking through things. Im sorry for dismissing what these people were feeling too?
                          Ill let u all do the talking, seeing as how im not very good at this

                          Take Care

                          Patrick

                          Comment


                          • #14
                            Re: Joint pain and HCM

                            Patrick , Do not stop talking or be put off , isn't that how we all learn by discussing and perhaps refuting at times each others opinions , findings or even translations of information? Look for instance what this tidbit did for an in depth sharing of symptoms and such. You know as a nurse by trade I followed text book theories for years . I came to realize that people are in fact unique and so are our illnesses. I learned that just because my former doctors thought there was nothing wrong with my heart according to their text books and interpretation , I felt there was . This led ME to search,find help, find this board and then through Lisa find help again, then another opinion that well Patrick, I now know has saved my life. So please don't ever step down from a healthy discussion ,that's how we all learn . Just take a page from Lisa , Keep an open mind . Be well stay informed. Pam
                            Dx @ 47 with HOCM & HF:11/00
                            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                            Lead failure,replaced 12/06.
                            SF lead recall:07,extracted leads and new device 2012
                            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                            Genetic mutation 4/09, mother(d), brother, son, gene+
                            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                            Comment


                            • #15
                              Re: Joint pain and HCM

                              I don't remember all that Lisa told me about it so she can probably describe it more in detail.

                              My AICD scar and my other surgical scars have formed keloids (sp?). Which don't form the thin lines that most surgical scars have they turn into fleshy lump like circles.The keloids look horrible and for me itch and sometimes feel quite tender. Lisa told me (please correct if I'm wrong) that it could be due to the genetic formation that caused my hcm. She said a lot of the HCMers get these on their scars as well. I didn't think at the time to inquire more. Maybe this would be a good time!

                              Mary S.

                              Comment

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