Newly diagnosed with FM

Discussion in 'Fibromyalgia Main Forum' started by texangal81, Jun 11, 2008.

  1. texangal81

    texangal81 New Member

    I have known for a few years that something JUST wasn't right with me but everyone was so quick to blame it on stress and depression and good old laziness that I continued to limp along. About a year ago I decided to have a complete physical and an irregular EKG sent me to a cardiologist who diagnosed me with mild cardiomyopathy (which has since been discounted by a second opinion, my heart is fine). WhenI asked him why if this was why I was so exhausted he said "no, did your doctor run blood tests"?????? YES, and they were all normal. So I spent nearly a year chasing a bad diagnosis.

    I continued to stumble along, convinced that I was just lazy and that I preferred sleeping to living. I have a high threshold of pain and I figured it was normal to hurt like that. My mom has been in constant pain for years, so I thought that is how it is supposed to be. I changed jobs so that I could lessen the grueling commute and was very fortunate to land with a sympathetic company. I have used all my sick days at this new job and I'm very careful not to take off unpaid time. I lost one job that way and almost lost another.

    The last few months have gotten worse and getting out of bed to come to work is a major achievement. In fact, my goal was to get to work and do my best. When I wasn't working, I was in bed or sitting in my chair. The thought of having to go out or even talk on the phone exhausted me. The aches and pains that I've had for years are now more often and prevalent. I started researching various ailments and at first thought it was CFS, then I found fibromyalgia and thought "OMG, THAT is me". Of course, people still told me "oh you don't have that, you would be doubled over in pain all of the time".

    I FINALLY got the diagnosis from my rheumatolgist today. I had all 18 tender points and most of the characteristics. I still feel like crap, I still hurt, I still want to crawl into bed, but at least I know it isn't in my head and that I'm not just a lazy bum. I know I have a long haul ahead of me, but right now I'm just glad I can put a name to it.

  2. lvjesus

    lvjesus Member

    Thank God for the internet and this message board. Learn as much as you can and be active in your treatment. That is how you get better. You might not get well (or you might) but now that you know which direction to go in, you have a good change of getting better with some medication or lifestyle changes that will help you manage your symptoms. I shudder to think how I would feel right now if I was doing nothing about this crap. Can I say crap?? LOL
  3. bunnyfluff

    bunnyfluff Member

    I am a Texan, as well!

    I hope you didn't go to the same rheumatologist that diagnosed me 10 years ago with "fibromyalgia"!

    I found out last year that is has been Lyme disease all along. No idea when or where I picked that up.

    Best of luck to you,
  4. texangal81

    texangal81 New Member

    I should probably qualify my diagnosis with "unless the blood work returns something else". She is testing for a myriad of issues to see if this is primary or secondary but I will mention Lyme Disease to her. Thanks!
  5. Janalynn

    Janalynn New Member

    Hi Erin,
    Welcome! I'm sorry that you have to be here, but it is a great place to come to for support, information, empathy and sometimes just an ear when you need to vent!
    Getting a diagnosis is a relief. Most people go for many years and many doctors before they get you know!

    I remember the day I was diagnosed very well. I was almost happy. (just to have some confirmation)..then my struggle began. I am someone who usually takes things head on, who researches with a positive attitude. This has been tough on me. I have realized a few things a long the way.
    This FM 'crap' is not something you can push your way through. You have to listen to your body.

    You also have to begin to put yourself first. That's tough for many of us. We're so used to putting everyone else first, to taking care of everyone else's needs before our own. It doesn't work that way with Fibro. You'll be no good to anyone if you don't take care of yourself and really listen to your body. You absolutely HAVE to rest.

    Support is another key piece of the puzzle. Find a good, knowledgable doctor if you haven't already. Get adequate pain relief. Educate family and friends. Don't waste your time on others.

    Stay away from stress as much as possible. I have found a direct correlation between stress and how my body feels. Stress is sometimes unavoidable, but in some cases we do have some control. I don't let anyone who is negative in my life. I've learned to say "no" when I need to. I don't take on more than is good for me.

    I'm sorry I'm getting a little wordy!!
    I hope you'll post a lot more.
  6. texangal81

    texangal81 New Member

    Thanks Janalynn. Right now I am exactly as you described, happy to finally be told I have a real, legitimate, physical problem. My mom has hounded me for months about sleeping all of the time, missing work, and being "so miserable". She was convinced that I was deeply depressed about my life because she can understand how I can be happy with my selfish little love. Personally I love it! I am only responsible to myself, my 14 year son when he visits (he lives with his dad), and my 2 1/2 year old grandson when I'm up to babysitting. I have a job I like (and really hope I can keep) and mostly NO ONE bugging me *L*.

    It is such a huge relief to know that I'm NOT lazy or depressed. But now the reality sets in. Right now I concentrate on just getting to work and functioning adequately. I lost a job 2 years ago to absentism and "sub-standard" performance before I had a clue that I really had something wrong. I took an interim job to pay the bills and continued to get worse. I assumed it was stress and the long commute. Then I was diagnosed with a bogus heart condition and blamed it on that. I almost lost that job too, but fortunately another one came along that was close to home and much more suited to my experience.

    That is where I am now. I have used all of my sick leave and don't want to get into a situation where I was before. THerefore, all I do is work. I go to bed when I get home and I stay there all weekend. Of course, some days are better than others. But right now I really need to keep working.

    Well it is 10:00 pm and that is WAY too late for me, I will pay for it in the morning. I got a little long winded too! Yes, I believe I'll be posting alot.


  7. annade

    annade New Member


    Welcome to this wonderful website. I am relatively new as well, diagnosed six months ago after six years of feeling like crap and being told a variety of things from your depressed to you have scleraderma (which I don't). It was a relief to finally get a diagnosis, however, it hasn't changed how I feel all that much other than not crazy.

    Now the real work begins when you try to find out how to improve your condition. As you will see in reading many different posts that we are all different and different things work for different people. Meds. may work great for some and not good for others. Yoga, meditation, massage, chiropractics, vitemin/nutritional supplements, etc... may also help some and not others. Just keep and open mind and explore various options with your doctor and other people you chose to work with to help you.

    By the way, as you will probably read if you look into Dr. Cheney's research, cardiomyopathy is very often, according to him, related to CFIDS/Fibro. It may just be that you do have some form of cardiomyopathy that is contributing to your symptoms. Not that there is a cure for that either, but interesting that it might be related.

    Welcome and take care.

  8. marti_zavala

    marti_zavala Member

    Hi texangal,
    I am in the Houston area as well.

    Glad you have a diagnosis. It may be secondary but either way, you can start working to keep yourself stabilized.

    Here is what works for me (I have FMS as well as CFS).

    For my fibromyalgia, I take magnesium 400mg and malic acid 1200mg. Do research on these supplements either here on this board, the library on this board or googling it.

    The keys for most of us is NO exercise, and NO stress.

    Most doctors will try to prescribe Anti Depressants for depression and for sleep. There are better solutions as AD's aren't the right kind of chemisty for us.

    I admire your dedication to your health - you are putting yourself and work before play. As you stabilize, you will be able to do fun things again. Ignore the nay-sayers - they are not living in your skin.

    Here are some great websites for when you are ready to do research.

    Keep your chin up!


  9. marti_zavala

    marti_zavala Member

    I have brain fog, sorry. Those websites are more for ME/CFS than FMS.

    Sorry. They are still interesting but probably not what you are needing specifically.

  10. marti_zavala

    marti_zavala Member

    I just posted this for another new member. It is a little overwhelming but just ponder the list and see what might work for you.

    Here is the link in case you are interested.

  11. katiebug61

    katiebug61 New Member

    I finally put all the pieces together and went to my DR and asked her if FM is what I have. I was hurting all over so bad and so tired all the time and depressed. She sent me to rheumatologist. He tested all the tender points and whew... it was a wonder I didn't involuntarily hit him. I never knew they were THAT sore. My GP had already started me on low dose Lyrica. RH dr did blood work to rule out RA and Lupus. Those tests were negative. I think my FM started after I had pneumonia in Jan. I noticed the pain and etc starting after that. I just thought I wasn't recovering from the pneumonia. There are so many different things that FM can affect. From what I have been reading on here, Lyrica is not always the cure-all for FM. It sounds like a trial and error type thing. I am just tired of hurting and can't take off any more time, but yet there are some days I just can't go. At least my GP told me that when I am hurting so bad, I can come to her office for a pain shot and it does NOT put you to sleep. It helps some, but does give me mild nausea. When it wore off tho, seemed like it was rebound pain. My rheumatologist does NOT believe in giving narcotics or muscle relaxers. He only wants to Rx Lyrica. Different things work for different people. He will be hearing from me today at my appt! Thanks for listening and if anyone knows of a sympathetic FM doctor in OKC, please let me know!
  12. texangal81

    texangal81 New Member

    My doc isn't keen on narcotics either but she gives me as much Ultram (within reason *L*) as I need. And fortunately, that is my drug of choice. Right now I'm taking Ultram 3x day and Celebrex in the morning. Do you know is the Lyrica improves the exhaustion? My pain is manageable, it is the exhaustion that keeps me down. I can't miss anymore work either, but some days I don't know how I'm going to do it. I've started looking into my company STD and LTD in the event it gets to the point where I simply cannot do it anymore.

    But right now it is one day at a time! OKC isn't far from Houston, c'mon down here, we have FABULOUS doctors! You can stay with me :)

  13. katiebug61

    katiebug61 New Member

    We are coming down that way in about 2 weeks. My hubby and I and another couple are going to Corpus Christi. I think a little R & R on the beach might help. I've been through Houston, but never visited. My GP gave me some Ultram and sometimes it helps, but yesterday, NOTHING helped. My goofy rheumatologist doesn't belive in giving anything other than Lyrica. It has caused me to gain weight. Today I have pain again and muscles feel like they are burning and upper back rib area is just soooo sore. Sometimes feels like it aches to breathe. This FM stuff is just unreal.