fm--heart failure

Discussion in 'Fibromyalgia Main Forum' started by rileyearl, Oct 11, 2005.

  1. rileyearl

    rileyearl New Member

    Today I called a vendor to ask about an order. The woman who answered the phone asked me what my customer number was. I searched on the old invoice I had for it and gave her the wrong number.

    I laughed and told her I have fms and one of the symptoms is called brain fog. She said she was familiar with fms because her daughter had it. I asked how old was her daughter and she told me her daughter had been 29 when she died earlier this year.

    I was shocked and felt terrible for bringing the subject up, but at the same time understood I had connected with her for a reason.

    The woman told me her daughter had sleep apnea. She had done a sleep study and was waiting for her CPAP machine to arrive. In the meantime, Her doc prescribed something to slow her heart down. That is what killed her. Her body couldn't take a powerful heart medicine.

    It was all so sad. I couldn't help but think I was talking with this woman because what she was telling me was important to pass on to you.

    If you or someone you know is in that situation with the heart slowing medicine, please get a second opinion. I know fm isn't a fatal disease, but it appears it could easily become one with the wrong doctor.

    I hope this makes sense. I just went back and deleted a sentence that must have been from some other conversation I've had lately. Talk about an airhead!

    Francie
  2. Sandyz

    Sandyz New Member

    THanks for passing this on. It is sad but good to know. I was supposed to get a sleep study but haven`t done it yet. I don`t think I could stand to wear that sleep apnea mask.
  3. rileyearl

    rileyearl New Member

    I'm putting off the sleep study for the same reason. My husband did it a few years ago and rented a machine for months, but rarely used it. I get claustrophobic with the window closed.

    Francie
  4. JLH

    JLH New Member

    Thanks Francie for passing along this info.

    It appears that this lady's daughter had heart problems prior to getting her sleep study done and being diagnosed with sleep apnea.

    Whether or not the sleep apnea had anything to do with her heart problems, we will never know. I really don't believe that fibro had anything to do with it--because of my own similar problems.

    It's a shame that the cardiologist treating this lady did not put her in the hospital to experiment with critical meds which would slow her heart down.

    I have had heart problems for a long time. Years ago, they would put you in the hospital when they made significant changes to your heart meds. I am currently on 3 heart meds and I also have a dual chamber pacemaker.

    I also have congestive heart failure. A cardiologist who was filling in for my cardio who was out for a few days when I was in the hospital for CHF, said he believed that my sleep apnea was the cause of my CHF.

    I have slept with my CPAP and oxygen for years and love it. It was difficult to get used to, but it didn't take long, and now I would never want to sleep without it. The secret was getting the best mask! I have this blue gel mask that is soooo soft on my fact that you don't realize "that much" that it's on!

    Thanks again for relaying important info to all of us!

    Sleep apnea CAN cause heart problems! And ... if you currently HAVE heart problems, it would be a good idea to get a sleep study done to make sure you don't have apnea which would cause your heart to work harder!!

    Hugs,
    Janet
  5. lease79

    lease79 New Member

    Heart medication scares me something shocking. I've been offered it numerous times over the last couple of years, but I'm going to hold out for as long as I possibly can ;)
    I so feel for this woman, it would have been hard enough watching her daughter go through this, but then to have her die from a medication :(
  6. dancingstar

    dancingstar New Member

    Oh, that poor woman! I can't imagine how bad she must feel.

    You are so wonderful to post this for us. It is true that we're all so busy trying to figure out what's best for our conditions, and the doctors often don't know enough about fm to help us in the right ways...it all gets so confusing sometimes. This is very important information. You could very well have saved any of our lives. Thank you very much.

    Bebe
  7. LollieBoo

    LollieBoo New Member

    So when my doc put me on Inderal and I felt really awful for the entire three days I took it... The morning of the fourth day, I told my DH NO WAY I would take it again- he said, "Come on, you have to give it at least a month to decide if it works." I knew the minute I considered taking something for an entire month that affected my body that profoundly made me absolutely panic, that I should not take it another day. I called my dr's office and explained to the nurse the way I'd felt when on it, and she said, "No- you should definitely not be taking that- do you have MVP?" I do, as well as a vascular disorder. I swear I'd read somewhere that Inderal can help with MVP, but nonetheless- I felt like it was definitely wrong for me. Thank God.

    People always mention how sad it is when a younger person is afflicted with FMS/CFS, but this is truly a tragedy- I'm glad she got you on the phone, Francie! There WAS a reason!

    Thanks!
    Lola...