I Was Just Diagnosed With Fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by shelly33, Jul 17, 2008.

  1. shelly33

    shelly33 New Member

    I was diagnosed about a month ago. I have so many questions. For nearly 10 years I was back and forth to my family dr., specialists, and even a surgeon. I took every test, x-ray, ultrasound that they told me to. With the exception of some problems in my abdomen, everything else came back normal. But I knew something was wrong. I'm 33 and started feeling like this when I was about 25. Why didn't the dr. ever discuss fibromyalgia with me? Last month I was at my surgeon's office and he mentioned that he and my hemotologist had been discussing my case and reviewing my history and felt confident in diagnosing me with fibro. When I told my family dr. he agreed. SO I came home and googled fibro because I didn't know what it was and after reading about it I was shocked. It's like someone wrote a summary of all my problems over the years and gave it a name. I can't believe it took the drs. so long. My first question is, besides lyrica and neurontin is there anything else that has helped any of you? I'm at my wits end and would like to have something to suggest to my dr. Lyrica didn't help a bit and neurontin made me sick. Any help would be appreciated. Thanks.
  2. lillieblake

    lillieblake New Member

    I take lodine for the pain. I also take lyrica, which has helped me. I find that massage where the muscles hurt helps but nothing helps the electic shocks and numbness.

    I understand that there is another medication very similar to lyrica that is out now, maybe generic lyrica?

    Anyway, I am glad to hear you found out what is wrong.

    This is a great site to get ideas on what to try.

    Are you going to apply for disability?

    Good luck.

  3. AnneTheresa

    AnneTheresa Member

    Hi Shelly & Welcome to Pro Health!

    Receiving a diagnosis of Fibromaylgia can be overwhelming but you've found a great site for information & support to help you along your way.

    Like you, I can't take the nueronten/lyrica meds but there are several other medications and treatments you can try including:

    anti-depressants - not because you're depressed but because boosting seratonin level has shown itself helpful in the treatment of FM

    pain-medication - this can range from OTC compounds to narcotics, depending on severity

    muscle relaxants - to help with muscle spasms etc.

    sleep aids - sleep is necessary for the muscles to repair itself.

    Treatment options include

    chiropractic care
    therapeutic massage
    trigger point therapy / injections
    lidocane infusions
    vitamins & supplements

    I'm sure others will be along to offer suggestions. Once again, welcome to the site!

    God bless,
    Anne Theresa

  4. Pansygirl

    Pansygirl New Member

    A warm welcome Shelly. I too am newly diagnosed with FM(Fibromyalgia) and I believe I had symptoms for many years but this April the pain and fatigue started and hasn't stopped so for now I take it one day at a time.

    This is a wonderful site with lots of information and wonderful people.

    I'm on elavil and I take tramadol (spelling?) for pain.

    Take care, Susan
  5. msnova74

    msnova74 New Member


    Here is my laundry list

    Zanaflex (antispasmatic/ muscle relaxer)-muscle pain
    Ambien CR (hypnotic) - sleep
    Oxaprozin (anti inflammatory)
    Tramadol for mod-severe pain
    Percocet for severe day apin
    Lortab for severe night pain
    visteril (antihystamine) sleep
    elevil (anti depressent) low dose for sleep

    The suppliments

    Malic acid
    Vit D

    Hope this helps

  6. cookie1960

    cookie1960 New Member

    hi Shelly,

    Welcome to this website - it is truly a lifesaver. I was dx'd five years ago, but like you it took quite a while to get that diagnosis confirmed. This is what helps me with my FM:

    Meds: EffexorXR - Serotonin flow
    Klonopin - anxiety & sleep
    b12 injections - monthly for energy
    topamax - migraines (just started this med)

    I hate pain meds and always have bad reactions so I stick with OTC like Aleve and Tylenol or use Heat and Ice.

    I have recently started a swimming routine to help with muscle strength. This is under the advice of my rheumotologist. She suggested swimming first with a progression to walking, biking, and then weight bearing machines. (yeah...we'll see about that!)

    Routine is important for my health. Same time up in the AM and same time to bed in the PM, plus regular time for meals and try to eat healthy. I listen to my body and don't overdo as this can really cause a flare up. And I do take a nap almost every day to help with the fatigue.

    Everyone is different - so listen to YOUR body - you will figure out what works best for you. And it's very important to find a dr. or team of drs. willing to work with you on different approaches to FM.

    Good luck,
  7. Janalynn

    Janalynn New Member

    Hi Shelly!
    Welcome!! So great to have a diagnosis, especially if you've been 'suffering' for a long time - along with that though, comes a ton of questions and the beginning of the journey....
    This site will help you a lot - Great information and support, which is SO important.

    I was not able to take Lyrica or Neurontin. I went many years without pain medication, but two years ago the pain become too much for me to bear without, so I do take pain meds. I also take
    Soma - a muscle relaxer.
    Topamax - same family as Lyrica and Neurontin (also helps with headaches

    I took Lexapro before being diagnosed. Not so much for depression but because I have a tendency to worry - so a little bit of low level anxiety is what I really take it for.

    I couldn't make it through most days without the above medication.
    I went for a LONG time with barely any good sleep. I'd sleep for maybe two hours at a time if I was lucky. Thankfully that has changed in the past 4 months or so - I think it's the Topamax that has helped. Sleep - good restorative sleep is critical!!

    Sleep, support, pain relief, as little stress as possible, a good team (you and your Doctor).

    How are your days? Are you in a lot of pain? How about your doctors? Are they supportive?
    I'd love to hear more about you!
    I hope you'll ask lots more questions and also offer advice to others from your own experience. We really all learn from each other.

    Nice to have you here!
  8. akandmk

    akandmk New Member

    I am sorry that you have to join our little family but this website is wonderful for info and for friends.
    I was diagnosed with FM in Feb and I tried lyrica which did nothing but gain weight. I've been on flex med with is a lower dose of flexeril.
    Currently I am taking neurontin at 900 mgs and tramadol.
    I'm afraid to keep asking my doctor for other meds so I'm sticking it out with these for a while. The tramadol gives me a little bit of my old life back but unfortunately i way over do it because my pain levels are lowered and once the pain pills wear off boy oh boy do i know it. The neurontin isn't working like it should right now and i have the stupid bumble bee feeling back in my hands.
    My husband gives me massages sometimes to help with the pain also.
    I take my complete vitamin and b12 every day.
    and now that we have an above ground pool i do excersizes in that. I'm trying to talk hubby into getting a heater for it so that in the winter i can use it too.
    I'm curious, how much neurontin were you on when you were getting sick from it?
  9. JaneSmith

    JaneSmith New Member

    This is a great place to talk. I was diagnosed in 1981. In those days there wasn't Internet :))))) and I was alone and suffered alone. So, welcome and feel like it's home!

    Warmest wishes,

  10. RicksChic

    RicksChic New Member


    Yes, this is a very overwhelming condition. So the FIRST thing I would do is buy a book about Fibromyalgia. There are several to choose from now. Most are priced very reasonable. Maybe even start with "Fibromyalgia for Dummies".

    Dr. Mark Pellegrino has written several, and he has FMS himself.

    I'm so sorry you had to wait so long for a diagnosis, since FMS has now been accepted as a real disease. Many of us have had it for over 20 years, and had to put up with doctors telling us it was all in our heads.

    I do hope you get a few books. I've had FM for 19 years and still read sections of my books at least every week.

    Take care.
  11. shelly33

    shelly33 New Member

    Thank you all for your responses and warm welcome. I will buy a book about fibromyalgia because I want and need to learn all that I can. Everytime I read something new I am shocked that my doctor didn't bring this up sooner. It seems like I have almost every symptom that I have read about so far. One poster wrote that they're afraid to ask their doctor for pain meds. I feel the opposite. I used to feel funny asking for anything that was a narcotic. It made me feel uncomfortable. My husband would get so frustrated with me because he could see the amount of pain I was in and wanted me to make sure my doctor was crystal clear on how much pain I was in. As time went on I became more and more vocal and I stood up for myself when he or other dr.s would suggest that I was simply depressed. Thankfully my doctor has been very understanding. But now I feel that with my diagnosis, I have no problem telling him what meds work for me and what don't. I'm currently working on finding something that helps my pain and that I can physically tolerate as a lot of medicine makes me sick at my stomach. The thing that has worked best for me is the 50mg. duragesic patch but my insurance wouldn't cover it in the past and it is soooo expensive. My doctor is working on getting a letter to the insurance company explaining everything we've tried and now he's able to telhem that I am a fibro patient so I'm praying that this works. I am very interested in starting a diet that may improve the way I feel so any suggestions would be appreciated. One question I have is can fibromyalgia cause rashes? Last winter I had a rash under my right arm and in a few places on my stomach and side. At the time my dr. said it could be shingles but it never took the form that shingles take. Now I have a small rash on my neck. It doesn't itch but does make my neck feel a little tight. Could this be fibro related? Thanks