What now?

Discussion in 'Fibromyalgia Main Forum' started by katemeister85, Jun 4, 2009.

  1. katemeister85

    katemeister85 New Member

    I was told two days ago that I've got FMS. At first I was excited to know that I'm not crazy. I felt total relief. I've had all these symptoms for 10 years and no one could tell me anything about it, and no one seemed to care. The doctors acted like I was just making it all up. I was starting to feel like maybe there's not really anything wrong with me and it's all in my head. But this evening my entire mood switched and I became really sad about the idea that I've been sick for so long and it's not going to end anytime soon. Yesterday I tried a medication for the first time and I had a severely bad reaction to it. What kind of a sign is that? I just found myself crying. Will I end up just getting used to the idea?
  2. vivian53

    vivian53 Member

    I glad you found a diagnosis and know that it is not all in your head. I'm sorry it has to be THIS diagnosis. Fasten your seat belt. Not all medicines will work like the doctor hopes they will. That's ok it happens all the time and is not your fault, it is either the medicine or the disease.

    There are many knowledgeable people here. They will help point you to where you need to go. For the most part I think people with this disease, or any chronic illness for that matter, have to take charge of their own health care.

    So best of luck to you and I hope the next medicine you try will do the trick and you'll be through with this board

  3. Janalynn

    Janalynn New Member

    Hello and welcome! I think you'll find a lot of great information here, compassion, support and most valuable - you'll realize that you are not in this alone!

    I remember the day I was diagnosed very well. I've probably had Fibro for 25+ years, the year or two before I was diagnosed I was feeling much worse. Went to a new doc, she suspected Fibro and sent me to a rheumatologist for his opinion. He confirmed. I remember calling my Mom from the parking lot almost happy -of course it was because I finally had an answer to why I was feeling the way I was.
    Since diagnosis 2 years ago, I can say that mentally this has been tough on me. It's a lot of trial and error to find what helps you feel better. I have to try to make sure I'm not defined by FM. That's hard when it slaps you in the face every single day, but I still look to my future as if I don't /won't let it alter my dreams. There are still things I CAN do, they may not be physical and they may not be every minute of every day. I can still love...love my family,my children, can still find laughter, can still offer support to others etc.

    Read, learn, find a good doctor. Do you have one? Your doc is an integral part of your 'team' of support.

    What kind of med were you given? Have you tried anything else prior to your diagnosis?

    don't take your bad reaction as a sign of anything, except that you need to try something else. Right now, it's about finding things that make us feel as good as we can, getting good sleep, learning to pace ourselves, removing as much stress in our lives as possible. REST when you can.

    Youll go through all of the phases of grieving. Denial, anger, grief, acceptance (I don't really know if those are the stages, can't remember!), but don't be surprised if they repeat themselves.

    You need support. I don't know if you're married, are close to your family etc. but I have found that that has been a HUGE help to me - knowing that those around me have some understanding. My family are actually the ones who tell me to rest. My biggest critic is myself -
    I'm working on that still - not feeling guilty for not being able to do things etc.

    I'm trying to love this body who sometimes feels like it's betraying me. However I've started to have compassion for it - telling "it" that we're in this together (my mind and body) and yes we'll get through this.
    It's about making adjustments. Yes, you'll get used to it, but not being complacent is actually a good thing because it keeps us searching for ways to feel better. Mentally is has taken some work to remain positive - but that has been big for me. I still cry, really tired of feeling this way, tired of the pain, tired of how it has limited me. I've had to focus on the things I CAN do as mentioned above.

    You'll be okay. Come here for support, find a good doc, a circle of friends/family who are there for you. It can be lonely when no one else really knows what it feels like - so you might have to educate those who you're close to - but remember everyone here DOES know what you're dealing with.

    Please post more -always join in and answer posts as well. We all learn from each other's experiences.
    I'm sorry you found yourself here - but glad you're here!

  4. Pansygirl

    Pansygirl New Member

    I want to welcome you here but wish you didn't have to deal with Fibro but am glad you finally
    know what you have.

    It's not all in your head~ our pain from the fibro is very real. Hugs for you.

    It takes time to figure out what meds work best for each of as no one thing works for all of
    us with fibro. So please let your doctor know which side effects you had from the meds and
    work together to figure out something different to try. There are alot of options.

    What types of meds have you tried? Are you taking anything for the pain?

    This is a wonderful place to come for information and we all support one another so you will
    be understood. Ask any question and use the search function for information as well.

    I was diagnosed last summer and I still go through up and downs ~ some days I really want this to go away and for now I know that isn't going to happen . I've made some changes in my life so I can still try to function somewhat normally for my kids and my husband and myself.

    I do try not to dwell on fibro but some days that is hard when the pain is making it hard to do anything. So I take it one day at a time and I do believe this darn fibro has helped me to enjoy more of the little things in life and that is a positive.

    The other thing I would suggest is do lots of research as you will be your best advocate and hopefully your doctor will work with you to find what will help you to feel better.

    I can't be the energizer bunny mom that I used to be but with some adjustments I still feel like I can contribute to my family .

    Hope this makes sense,

    Gentle hugs,Susan
  5. Pippi1313

    Pippi1313 New Member

    It's absolutely normal to feel "happy" about having a diagnosis!
    You're happy because you've been vindicated FINALLY, not because you're sick. We understand that.

    It's so hard to cope with being sick & KNOWING you're sick, while the "experts" insist it's "all in your head"!

    The others are right. This is an excellent place for information & support!

  6. butterflydream

    butterflydream New Member

    is very important. This is the very first thing my rheumatologist said to me .

    There is a very good magazine published every 3 months, don't think i can mention the name of it on the boards.
    Read as much as you can about fibromyalgia, seems always something new is being discovered.

    The boards here are great to share your experience and listen to others whom are in much same situation. Keep in mind not all medications work the same for all.

    Welcome and ask as much as you need to.
    Many kind and educated people (friends) here to help.

  7. kjfms

    kjfms Member

    I am sorry that you have FMS, I have it as well.

    Having any chronic illness is very hard for anyone to deal with or accept. Perhaps a consultation with a counselor may help. Please do not take this the wrong but they are times when it can really help to speak with a professional. Naturally this is a personal decision and only a suggestion.

    Depression also comes and goes with a chronic illness. I have just gotten over a bout of major depression a few months ago and talking with my physician has help a lot.

    Good luck,


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