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  • HCM related back pain

    I read a post where a few people mentioned a sharp pain in their upper back. I did not know it was HCM related. I have had this pain off and on for a couple of yrs now and always thought it was just a muscle problem in my back. I have never mentioned it to my Dr.
    I would like to know if a lot of other people have this. Are we sure this is HCM related?

    Thanks all,
    Pam
    It's not what you gather, but what you scatter that tells what kind of life you have lived.

    Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

  • #2
    Re: HCM related back pain

    I get a pain across my upper back which I ascribe to arthritis, a pain in my shoulders which I ascribe to bursitis, a pain in my middle back which I ascribe to my kidney problems, a pain in my lower back which I ascribe to my iliac, a pain in my left side below my arm and tightness in the chest, both of which I ascribe to HCM. I also have a lot of discomfort in my legs which I ascribe to water retention and increasingly poor blood circulation. I’m left handed and have a lot of discomfort from my left thumb which I ascribe to damaged ligaments. That leaves my stomach which is generally good but occasionally will cramp and double me over. Oh yeah, I forgot my head – from time to time I will get headaches and/or a stiff neck.

    Aside from that, I’m generally pain free. Life is good.
    Burt

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    • #3
      Re: HCM related back pain

      It is very common for women to have "chest pain" in their upper back, jaw, neck and upper arms. Discuss your symptoms with your cardiologist.

      Be well,
      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


      • #4
        Re: HCM related back pain

        Lisa, You said that women get pain in the upper arms. Does that mean the pain is sometime in the right upper arm? I have felt that ocassionally.
        Bettie
        septal myectomy on Jan. 27, 2005

        Comment


        • #5
          Re: HCM related back pain

          I do not know much about back pain and HCM other than my own experience. But, I know this much. When I was having the stress test in Feb, I started having severe back pain, which from experience I associated with heart problems. I told the nurse and tech and they got pillows thinking I meant I was uncomfortable. But, the cardiologist, who did not hear what I said, came over because my monitors were showing problems. Within a minute or less I was having chest pain, my bp was dropping, my heart rate would not rise, and they knew I was having problems. I have known for years, even when I was a teenager (I am now in my 50's), that if I did not slow down when I felt that certain back pain that I would feel much worse soon and begin to feel faint.

          So, my experience is that at least for me the back pain is a warning of problems ahead. My experience during the test and their finding a problem just after this tends to confirm this to me.

          Rhoda

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          • #6
            Re: HCM related back pain

            Part of why women have not been treated aggressively for heart attacks is because we don't always have the classic left-arm, chest pain symptoms ---we get stuff like stomach pain, back pain, neck and jaw, etc.

            So if you have pain in your torso and arms that you can't put down to bad chili, a torn rotator cuff, or too many laps, make sure you rule out that pain as heart-related.

            S

            Comment


            • #7
              Re: HCM related back pain

              I have been getting back pain for years, but never related it to HCM. I get it most when I am under stress or doing something for awhile...like getting bulk mail ready for mailing, etc. I get it in the upper/middle of my back. Does anyone get it there? Maybe there are other aches that are related to HCM?
              Now I know I am not that unusual afterall. It sure is good to read posts that can help.
              Esther

              Comment


              • #8
                Re: HCM related back pain

                Over the years, my response to "aches & pain", has been "oh, it's nothing-work thru it" - but I was wrong, to just blame myself for being a wimp. Now, a Myectomy, a By Pass & Monthly (improved from weekly) Cardiologist visits, I now recognize "It's Something" My Cardiologist told me for years that Women respond differently from Men, but I always blamed myself for not being strong enough. This Board has helped me seee "I'm not (so) weird & other eople struggle with some of the same things I do! This has made a Major Impact on My Life!
                THANK YOU - ALL OF YOU!

                ps - I too have that middle back pain
                RONNIE

                Comment


                • #9
                  Re: HCM related back pain

                  Esther I get exactly the pain you describe and seems to be provoked like you explained. 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: HCM related back pain

                    Hi Pam
                    I know the pain doesn't last very long, but sometimes it comes back in a few hours. I wonder what is causing it? I know it related to HCM, but how? Do you get pain any where else when you get the pain in your back? I don't. Like I said before, it's great being able to compare notes with people with the same heart disease. This is something I was never able to do before. Thank you, Lisa, for creating such a wonderful, informative site.
                    Esther

                    Comment


                    • #11
                      Re: HCM related back pain

                      When I get it and in the past when i got it and I had a large gradient it would last a lot longer then it does nowadays. It is in the back mid right side. I usually seem to note that I am more filled with fluid and short of breath like as if I had asthma ; sort of tight and wheezy. I do not have asthma and have had pulmonary funtion tests with and without methyl choline. They did say I had a degree of pulmonaary obstructive disease. Knowing what I observed with patients and hearing their complaints it does sound like that could be a contributer. I feel it has to be majorilly related to the HCM as these symptoms seem to be enhanced when the heart is working with force for tasks and such . It stands to reason as we can visualize the heart working hard and the demand for Oxygen and nutrients increasing and the lungs sucking hard to meet their needs for supply to the body. It is like everything starts to back up and work less efficient as with airation and perfusion. Make sense? The pain also seems to move forward to the front right when things are real bad and I am pushing like a freight train. The pain is sharp to dull comes and goes if I back off , better if I lie down. I find myself unable to stop rubbing it when it is at it's worst. My back I press against a hard surface and it makes me feel better. If you are experiencing similar, a good tool is to try to measure your girth and compare it to other days. Along with your daily weights and even measurements of feet ankle and calf. I know , a lot of work. Mine is very measurable and different from day to day when I am having a problem. Follow the belly button line for accuracy. These are data that the docs can work with. From the beginning this has been a problem for me ;it is ascites. The liver becomes engoraged as the systemic fluid goes up . The only thing that works for me is diligent management of my diuretics and getting the feet up for frequent periods. And actually making sure I am well hydrated and not too salty. I know it sounds backwards but it works for me. I hope this has helped . It is good to share. We find our common ground amongst a diverse disease. . 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


                      • #12
                        Re: HCM related back pain

                        Pam
                        Yes, it does make sense. I know when I get pain when I am driving, I press my back to the back of the seat, this helps. If my husband is around, he rubs my back which relaxes me, therefore I am able to breath better and my backache is not as bad. I do wear support knee high stockings (I was fitted for them while I was in the Mayo hospital) and it is difficult to know if my ankles are swelling. There are times I notice the area above my stockings, at the knee, is swelling and my abdomin is swelling because my pants are tighter around my waist. I am on 3 different types of diuretics daily. My doctor can't seem to find out why I am still retain fluids. I do watch what I eat....no canned foods, I don't use salt when I cook or add salt at the table, occassionally I'll have a hot dog when we have a cook out, but not often. Oh well, another mystery
                        Esther

                        Comment


                        • #13
                          Re: HCM related back pain

                          Just out of curiosity last night I decided to test what we have been saying on this topic. I really knew the outcome, but wanted to try it anyway. Ed and I went out for a very late (9 pm) dinner due to working late on some writing we needed to finish. It had been a very hot humid day (over 104) but when we came out it was still hot but there was a nice breeze and it was spitting a few drops of rain. We had our umbrellas so I suggested walking home. Ed was reluctant because he was afraid we would get away from the bus line and if I had problems, it would be hard to get back. But we decided we could find a taxi if that happened. It was a long walk, but we took it very slowly, and I did not start having trouble until we were maybe 3 or 4 western style blocks from home. At that time I started to get that back pain. For me it is pretty much in the middle and then spreads to the front left right above my heart. Usually I stop as soon as I feel that pain. since Dr. Gilligan said that I could develop "potentially fatal arrhythmias" if I push my heart to beat faster. But just out of curiousity I kept going last night. (I don't think that is quite as dangerous as it sounds because I have pushed myself past that point my whole life without dying, so actually I did not even think of dying and obviously I did not.) Anyway, the pain spread to the front but did not get bad, but a few minutes later, I had to stop and sit for awhile because my knees were starting to tremble and buckle and I knew I was pushing to the point of foolishness. So, what's the point? I guess, once again I confirmed that for me that back pain is a warning I must heed. Maybe some of the rest of you can relate to this and figure out how to stop before problems get too bad.

                          Rhoda

                          Comment


                          • #14
                            Re: HCM related back pain

                            I have some of these same issues to. Mine is not really the back though it is mainly my left shoulder. It feels very heavy and it aches. Not a sharp pain just feels like my arm is dead weight. Then the pain migrates to my chest . It feels like an elephant has decided to sit on my chest.

                            I used to ignore these symptoms because I thought it was residual pain from being hit by a car on my bike but it only happens when I'm feeling really tired.

                            Makes a lot of sense now!

                            Mary S.

                            Comment


                            • #15
                              Re: HCM related back pain

                              You guys reminded me of three things. The first is when I bend over for a minute or two – specifically to tie off the plastic kitchen trash bags – my middle back kind of gets stuck and I have to lean on the kitchen counter to straighten up again. I don’t think this has anything to do with HCM but after hearing you guys, I’m no longer that certain.

                              The second is my shoulders sometimes are very stiff and sore – particularly my left. There are times when I can’t really raise my arms without a good deal of discomfort, but at other times things are fine. I’ve been attributing this to bursitis, but my entire shoulder is involved – sometimes including my neck. Could this be a manifestation of HCM?

                              And the third thing is the pain in my front left chest. If I were a woman it would be just under my left breast where the band at the bottom of the bra would go. This I have always attributed to HCM, but it seems to come and go of its own accord without regard to any activity or inactivity. Thankfully it usually doesn’t last that long.

                              Don’t we sound like a bunch of old cronies sitting around the cracker barrel comparing aches and pains, and trying to one-up each other? By golly, we’re not that old yet.
                              Burt

                              Comment

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