Just Diagnosis with Fibromyalgia, Not sure how to handle this

Discussion in 'Fibromyalgia Main Forum' started by CgWife, Jul 10, 2006.

  1. CgWife

    CgWife New Member

    Hi, I was just told by my Dr's that I have fibromyalgia and was told that there is no cure and that I will always be in pain. I find that rather depressing, I sleep sitting up on a pile of pillows because I cant take the pressure on my neck and shoulders. My hands go numb or my fingers will throb and send sharp shooting pains into my hands and wake me up (if I am actually sleeping). I am still learning more about this disorder. Can anyone share their story, and what they do about it. The funny thing about this whole thing is that I have everyone of the symptoms of this disease and I have had it for over 13yrs and had serveral surgerys just to find out this is what I had all along. I have the Irritable bowel,panic attacks,
    restless legs,mirgraines,insominia,depression the whole thing and just now getting the right diagnosis, how depressing. I dont know what to do about a job? can anyone help me?
    signed Confussed
    CGWife
  2. kirschbaum26

    kirschbaum26 New Member

    Dear CGWife:

    Sorry that this terrible disease has brought you here, but you will find a great deal of love, support, advice, information, laughter, etc.

    Finally knowing that you have a disease and that it has a name, and that it is not "all in your head" most likely came as a relief. Especially since you mention you have had surgeries in the past. Many people here have had symptoms for years, if not decades. Each person is different and therefore it is sometimes tough to offer help or info that all will accept or be able to apply to their situation.

    There is lots of info out there, and one of the best things that you have done is to come here and post a message. You will be amazed at the support and kindness that you will find here.

    Are you currently taking any meds for any of your conditions? Any therapies that you are doing or have tried that have or have not worked?

    For example, I have a cuddle-ewe mattress topper. I have had it for 4 years now (it starts out fluffy and about 4 inches thick, and slowly gets compacted) and it made it possible for me to sleep for longer than 40 minutes at a time. You can find out more about it here on this website, and they even offer a 30 day money back guarantee. Some people use the memory foam bed toppers, and some take different medications to be able to sleep. As you might have read, or heard, the lack of restoritive sleep makes this diesease sometimes cumulative...in that each day/night that goes by may cause you more pain. Just something to think about.

    Welcome.

    Ingrid
  3. Pianowoman

    Pianowoman New Member

    It's natural to be confused when you are first diagnosed. There is a lot to learn and often you have to experiment with different treatments.

    There is so much here and I hope you will take the time to read posts and ask questions. You have to take it one step at a time.

    Getting sleep is crucial and if that is a problem, you may need some medication to help. That can make a big difference. Help with pain is also key and again you may need medication.

    There are many natural things that work for some people and you will read about them here. Changes in diet can make a big difference. Taking a good multi is a start and many find magnesium to be helpful. Pro Health has a wonderful assortment of specially created supplements. You can look in the store or order a catalogue.

    Pacing yourself is also really important. Resting between activities and limiting what you do in a day is so important.

    There are lots of good book too, so when you are ready, you can find some good titles and add to your knowledge.

    That's a lot for now. Take care.
    Kathy.
  4. onlythestrong

    onlythestrong New Member

    Maybe there is not a cure RIGHT now but there will be.
    And as far as them telling you that you will always be in pain,I know for a fact that's not right .You follow this message board and you will hear of it all the time.
    Please don't believe them and give up hope WE WILL BEAT THIS.
    I'm sorry to rant but I hate doctors planting negative things in peoples minds.
    Good luck and don't give up,I don't!
    Hugs,
    Mary
  5. hangten52

    hangten52 New Member

    I used to post on here all the time, but have had some real setbacks and haven't been on lately. I too was just diagnosed with FM and CFS. I've read alot about FM & CFS lately and have learned that it takes a long time b4 the patient is correctly diagnosed w/FM. I don't blame my doc; it's just that this disease mimicks alot of diseases.

    I was diagnosed w/occipital neuralgia, C5/6 DDD and herniated discs in neck, DDD and 2 herniated discs in back, sacroiliitis, hip/knee pain, foot pain (can hardly walk nowadays) and RLS. Now, my shoulder/arm/elbows hurt-oh, and I also have bilateral CTS in both hands.

    I think this disease just creeps up slowly and distributes pain in joints, limbs, spine, etc. one by one. I know I'm 10x worse now than 6 years ago. But, it's a good feeling knowing you can lump all this into FM.

    Do you take pain meds? It helps me get thru the day. I also take Elavil at night for sleep (take 12 hrs b4 you want to wake up and you will wake up feeling refreshed not groggy), and I take Lyrica for the nerve pain in my legs. You may want to see about getting something for deression and/or anxiety if you are experiencing problems w/this.

    Sorry about your dx but glad docs know what they are dealing with. Good luck!

    donna
  6. janieb

    janieb New Member

    I, too, had fibro a long time before they hit the proper diagnosis.

    From the reading I've done on this board, it seems we find our way slowly. There are pain clinics, doctors who specialize in fibro and meds that will help you get through the days and nights. It does take a while to hit on the right ones, though. I find I need to pace myself or pay the price later.

    Started a new protocol from a book by Dr. Paul St. Armand called "What Your Doctors May Not tell you about Fibromyalgia." It taught me a lot and gave me new hope.

    You may find you can work and if you can't, there's disability. Don't lose heart.

    Blessings,
    janieb
  7. musikmaker

    musikmaker New Member

    So much of what we have can be managed. I am referring to all the symptoms you/we have. ie: restless legs, IBS, pain etc. I'm not saying they will go away but with the help of the right doctor, reading and boards like this one, you will find things that will help improve your quailty of life.

    Not everything you learn will help your specifically. It is a hit amd miss effort which can take you some time. I am using a mix of traditional meds and supplements to manage my symptoms. Others use only natural. It depends on where you are comfortable.

    You can get your pain levels down. If your Doc doesn't have anything to offer you such as pain meds or anti-depressants (used to manage pain), go somewhere else.

    There is a lot of good info shared on this board. Good luck finding your way.
  8. CgWife

    CgWife New Member

    Thank you for your kind words of support, I am glad to know that I am not the only one out there with this disease/disorder? I am in physical therapy and taking pain pills and amitriplyine for depression. I dont know if the depression med is working because I feel like I am in a rut and I just don't want to do anything. I just sit around and look at all the things that I need and should be doing, but I just dont have the energy to do them. I just recieved my prohealth catalog in the mail and was looking at the supplements for energry and wt loss. Had you any advise on this? any suggestions? Thanks for responding to my e-mail, I appreciate it
  9. CgWife

    CgWife New Member

    I have read that getting sleep is important, sometimes I just cant sleep I do take ambien for sleep. sometimes it works and sometime it does not. I just worry about alot of things, and pay for it the next day. I just viewed my catalog of supplements from pro-health and am looking at the mental alertness and wt lose supplements they have to offer. Do you recommend any of these?
    Thanks for your support
    Deb
  10. CgWife

    CgWife New Member

    Thank you Mary,

    I do need to think positive about this. I just am feeling very depressed since they told me. I am on meds for depression I hope it starts to kick in. I will keep you posted. thank you for being my cheerleader!
    Deb
  11. CgWife

    CgWife New Member

    My physical therapist suggest water therapy and I am looking into it, so I guess it really does work huh?
    I am on alot of meds sometimes I think it is way to much. But then their are times when it is not enoough, I am just strugleing with the lack of energy and motivation and I am sure depression is in there too. I just dont know how to jump start myself. any suggestions?
  12. CgWife

    CgWife New Member

    Thanks for the book info, I will look that up. Hopefully it will help me.

    Thank you again!
    Blessings
    Deb