Was doing better, now getting worse... along with chest pains.

Discussion in 'Fibromyalgia Main Forum' started by Shananegans, Feb 4, 2007.

  1. Shananegans

    Shananegans New Member

    It's been a long time since I've written to this board but I need some help, so I thought I'd come back for a visit. Over the last year my health had improved immensely and now everything is going down the tubes. I have been horribly sick on and off for the last 3 or 4 months and I just don't know what to do.

    I suffer from Fibromyalgia and Chronic Fatigue. I had my pain levels under control as well as my fatigue and now I feel like I'm falling in a hole again. I'm so frustrated. And on top of all that I have something new going on, my chest is killing me and I am having a hard time breathing. I went to the ER last Tuesday and found out at least it's not cardiac related but they didn't solve the mystery either. I've been doing some reading and came across something called Tietze's syndrome. From what I read it's an inflammation of the cartilage in the chest wall and it does eventually go away but it sucks majorly while it's visiting. I don't know what to do. I work from home and can barely make it to that... And I really like my job. I actually found it on this board! I work for NTI (National Telecommuting Institute), as I know some of your know what that is. Luckily, everyone who works there is disabled, so they understand how hard it can be at times to get to work even though you don't really have to go anywhere, but it's still frustrating when I can't work.

    Does anyone else know anything about Tietze's syndrome? Any info would be greatly appreciated.

    Also any suggestions on how to get through yet another bad part of the FMS and CFS would be useful too. Right now my medicinal regimen contains 30 mg of Avinza every 12 hours, 600 mg of Ibuprofen and 750 mg of Depakote ER daily along with B12 and magnesium supplements. What does everyone else take to help with the pain? Mine is back and with a vengeance! I have already been through the muscle relaxers and many other pain killers I can't even think of right now. Any words of "wisdom" would help.

    PS... In good news for those of you that might remember who I am, DJ and I are now married and very very happy despite the miserable time I am having right now! Just thought you might want some good news in this post... :)

    Thank you in advance!
    Shananegans
  2. pearls

    pearls New Member

    Chest pain is my major symptom. I've had it since the start, though it happens much less often now, and with much less severity. Before I was diagnosed, I often felt like I couldn't breathe and even called my doctor after hours because of it - something totally out of character for me. After my diagnosis, my pain doctor put me on Vicodin, and then also on Oxycontin (the Oxycontin was taken at regular hours and the Vicodin was for break-through pain). The way the doctor expained it to me was that he had to take me past the pain level with the pain medications, and then the medication levels could be gradually reduced. That was exactly what has happened. I've been totally off the Oxycontin for about a year, now, and only take Vicodin when needed. Some weeks I don't take any, but when I have visitors or otherwise get "out of whack" I have to take three to five in a day, maybe for several days or more. Nothing else takes care of chest pain for me. I still have the fibromyalgia, but my life is so very much better than it was before the regimen of pain medications.

    As to what can be causing the chest pain, there are a lot of things that can do that. You should see a cardiologist, for one thing. A trip to the emergency room is not enough to tell you for sure that there is nothing wrong. In fact, unless you know otherwise, you may have been seen by a gynecologist or even a podiatrist, for example, rather than an emergency room doctor, much less a cardiologist. Doctors often "moonlight" in emergency rooms.

    You also might have a pulmonary problem or a gastrointestinal problem, or something else. Or you may have to have some blood tests for possible infectious disease.

    However, I believe you are having a flare. It can happen for no reason at all, or it can happen because you have pushed yourself too hard for too long. When a flare comes along, we have to pay attention! You must see your doctor, who I hope, has an understanding of what you are going through and what to do about it. If not, you must find someone who does know what to do.

    By the way, Welcome back. I'm glad to hear you are happily married. I, too, used to write to this board, but have only visited occasionally for several years now.
  3. mujuer

    mujuer New Member

    and then again, maybe not. Ever since the fall hit I have been in pain and on and off of prednisone. I had a great summer except for unexplained chest pains and terrible breathing problems. I had two pulmonary function test as well as a stress test. Nothing could explain it. It had happened the prior summer also and as soon as the weather turned cold, the problem with the breathing stopped. I would go a full day and not able to catch my breath. My sister has lupus and I explained to her what it was like and she said that it sounded like a lupus attack but was tested to no avail. So now I get to live with untolerable pain in the winter (live in the pac northwest)and breathing problems in the summer. I take tramadol for the pain but it is short acting and takes a long time to kick in. I would like to know more about this Tietze syndrome. I have rib pain but the dr. said that it is the fibro. Welcome back.
  4. hugs4evry1

    hugs4evry1 New Member

    Since I remember you well and was wondering how you're doing, let me first just say, YEAH!!!!!!!!!!!

    Congratulations, I'm so happy for you both!!!!!!

    Doesn't it just figure though that you feel like crap now too? I'm sorry, I really don't know anything about Tietze Syndrome, have never heard of it actually so I'm probably not going to be any help to you.

    You may have to check my profile, I changed my user name so I could talk about my daughter some and try to protect her privacy a little better.

    Hugs to both of you......Wish I could have helped more (or at all!!)

    Nancy B
  5. Defor

    Defor New Member

    Hi Shannanegans,
    I hope that you've got this sorted out by now.
    I'm going through a similar thing right now. I get the heart pains and also numbness down my left arm. I've had it for years and I assumed it was part of ME. I also get rapid heart beats and a feeling of 'pressure' that goes up my chest and out the top of my head.It leaves me breathless and a bit weepy.
    I have an appointment with a cardiologist in March after a 24 hour ECG test and MRI scan done...it's scary!

    I've recently changed my GP after 25 years of neglect and ignorance. I was told "To wear red, phone Star Trek and ask for Dr. McCoy. He would aim a machine at me which would buzz and tell him what the problem was. Then he'd aim it at me again and it would cure me...but only if I was wearing red otherwise I would die".

    So the 'CURE' folks... is to wear red!

    Hugs and best wishes,
    Defor. XXX

    [This Message was Edited on 02/16/2007]
  6. momof471

    momof471 New Member

    Tietze's is related to Costochondritis which several of us have. It can be really scary when you first have these pains, especially when it hurts to breathe. I would rule other issues out with a cardiologist, before taking that diagnosis though. When I am having a bad flare of that during cold weather it helps me to put one of those heat patches on my chest. Hot showers help loosen you up enough to move and sometimes I will use ice to just numb it. It depends what works for you. Do be sure to get thoroughly checked out though, to make sure it is not your heart!
  7. Shananegans

    Shananegans New Member

    HI!!!! I remember you too!!! Thank you for the hugs! And it does stink that I'm going down hill now, we just got married in December, but he is wonderful, patient and so very very understanding so I couldn't be luckier in that department. It is so hard on him to watch me go through all of this. He has never experience the worst of me with FMS because when we first got together was when I was just coming out of my two year slump, so it has been a rough one and he worries so much, but he does his best to be here for me and comfort me in ways only he can as we sit around and wait to find out what is coming next.

    It's good to hear from someone I've chatted back and forth with so much! Hope you are doing well and I'll probably be around here a lot more than I have been lately so I'm sure we'll chat again.

    hugs,
    Shananegans
  8. pearls

    pearls New Member

    I didn't mention myofascial chest pain in my previous post and a mechanical way of dealing with it. Another way I've dealt with my chest pain is by putting a tennis ball into a sock, hanging it down my back while pressing very hard on a wall. While doing that you make several very hard (and painful), presses, moving slowly in one direction on the muscles on either side of the backbone opposite the center of the chest. You may have to find another particuluar place in your back that will help you. For me, tight muscles in the back will cause referred, crushing chest pain. This tennis ball procedure often releaves it without meds. Sometimes I use this with meds, or when meds aren't doing the job. It is painful to do the procedure, but short pain is worth relief of constant, debilitating pain. I prefer to use the tennis ball in a part of the house where I can have my back on a wall, and can brace my feet up high, like in a hall-type bathroom (where I brace my feet on the counter opposite the wall where I have my back), or in a hallway (where I push with my foot on the opposite wall at about counter height).

    Myofascial pain is caused by "knots" in the muscles, which are painful to the touch (with pressure applied). These are called "trigger points," and are not the same as "tender points," "pressure points," or "accupressure points." Tender points cause local pain and don't require pressure to feel it when touched, and trigger points can refer pain, and require firm pressure to bring on pain. "Tender points" are part of how an offical diagnosis of fibromyalgia is made, and fibromyalgia sufferers usually have both tender and trigger points.

    A good book on the subject is "The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief," by Clair Davies. In this book, Davies simplifies for laymen the methods developed by Drs. Janet Travell and David G. Simons in the treatment of pain. These metods are good for all kinds of pain relief in muscles, incluing fibromyalgia, FMS, carpal tunnel, arthritis, headaches, repetative injuries, trauma from accidents, etc. Each kind of pain has its own techniques, but they mostly boil down to how hard and how long you do this kind of massage. Don't do any one place for more than a minute, but you can repeat the procedure in an hour or so. The book is in paperback and is not expensive, though, so everyone who suffers with chronic pain should own a copy. At the very least, you'll learn more about what causes a lot of your pain, which is very helpful in learning how to deal with it.
  9. Shananegans

    Shananegans New Member

    Thank you all for your suggestions thus far. I went to my doctor yesterday to let them know that the pain has not subsided and they read through my paper work from the ER.

    Turns out all of my EKG, chest X-ray and CT Scan was in fact read by a Cardiologist, so I guess the hospitals around here are better than I thought... I'll be darned... Anyways, so the last step to completely ruling out cardiac is a stress test. There's only one problem, I can't get in for one until next Wednesday, which sucks because I'm still in pain, still can't breathe and nobody is going to do anything about it until we get the test results back from the stress test.

    In the mean time I get to suffer from lack of oxygen, therefore I am exhausted and functioning on any sort of a level is kind of out of the question. Not too mention that the pain is above and beyond that of my "normal" fibro pain. And my head is killing me which again I attribute to lack of oxygen. I'll keep everyone posted as to what happens from here.

    Thanks again!
    Shananegans

    I forgot to mention: another thing that was noticed when I went to the doctor was that my blood pressure was way lower in my left arm (where the pain radiates) then in my right arm. Any ideas on that one? Thx! [This Message was Edited on 02/07/2007]