New Tired of Feeling Awful and No Sleep

Discussion in 'Fibromyalgia Main Forum' started by Leanna44, Jul 21, 2008.

  1. Leanna44

    Leanna44 New Member

    Hello All,

    I am new to the boards and newly diagnosed with FMS. It all started about 7 months ago when my lower back hurt so bad that I had to take time off work. They ran all kinds of tests all of which came back normal, yet, the pain would not let up, it was relentless and it still is! I ended up having to quit my job because I could not stand on my feet for more than a short time.

    I was placed on the Fentanyl Patch 50 ml, which for me has not really helped with the pain. I also have been to a pain management clinic and had two steriod injections which really did not provide much relief.

    My symptoms began to change around the 5th month and included but were not limited too: Severe burning and pain in my lower back, legs and buttocks, severe pain inbetween my shoulder blades, arms, knee's and hips, I have to pee constantly and have signs of IBS, also jerking involuntary motions in my arms and legs. Sleep issues then arised and I started waking up between every two to four hours due to pain or the involuntary movements in my arms and legs.

    My pain management doctor then diagnosed me with FMS. I am sure that my GP will want to send me to a rumey to verify the diagnosis as soon as my shots have been completed.

    All I can say is that this FMS is brutal. I feel horrible most days, am in constant pain, and find myself resting a lot due to improper sleep. The problem is that laying for too long makes it hurt worse and I have to fight the urge to lay around all day due to the pain and fatigue.

    How do you all deal with this thing? I am so fatigued, an emotional mess and I feel horrible on top of it.

    Any advice or input would be greatly appreciated.

  2. Janalynn

    Janalynn New Member

    Hi Leanna and Welcome!
    I'm glad you found your way here! There is a lot of people, information and support!

    How do you deal with this? One day at a time. I was diagnosed just over a year ago (but have had FM for many many years with the last two being the worst). You said it - the emotional "mess" is part of the process. I was there for most of this past year, two steps forward, one step back. It's been a definite period of adjustment - and readjusting, but I feel like I'm definitely making some progress!

    Sometimes it's a matter of hanging on. As 'simplistic' as that sounds. Having a good support system has been critical for me!
    Finding the right combination of meds - whichever route you choose to go - natural or prescribed (or a combo of both) is important as well. You need to find some relief.
    If your pain meds are working, find something that does. It's true that most of us don't find something that takes away our pain 100%, but you need to be functionable and as comfortable as possible!

    Sleep is also SO important - without it, your body and mind WILL be a mess. Many people here take things to help them get good sleep.

    Keep posting! We're here for you. Answer others as well - I'm sure you have a lot of great experience to share.
  3. wordwarrior

    wordwarrior New Member

    Hi Leanna44:

    WELCOME! Just found this place too. I am going through much the same as you. I have been in pain for as long as I can remember. I sought medical help after I left my abusive husband in 2000. Been to Chiropractors, Orthopediacs, Internists, Neurologists, and finally two months ago a well respected Rheumatologist. He finally diagnosed me with Fibromyalgia. I also have IBS, TMJ, had 1/2 my thyroid out last year (underactive/hashimoto's disease), massive migraines, bad sleeping problems, tired all the time, etc. Been tested for everything known to mankind. Basically, I'm a mess.

    Right now the Rheumatologist has me on cyclobenzaprine (not sure of the spelling but take it at night and is helping with the sleep a bit) and ultracet (pretty worthless on pain). I take firocet for the migraines - been on a million other things - it is the only thing that takes any of the pain away. My pain throughout the body has gotten worse over the past 5 years. I was once athletic, able to go on two hours sleep and juggle school/work/kids/dating/pushing legislation through for victims of DV/dealing with the ex/driving back and forth to my real house 4 hours away every other weekend in NYS/Working in NJ (yuck)/and writing in my spare time - now I still try to do it all (except dating - I re-married a great guy!), but it is killing me. I can't STAND the idea that anything slowing me down - but FM is like kryptonite to me, as I am sure it is to you.

    Hopefully both of us will get some help here on dealing with FM. I am thinking reading on the subject will help. HAve you done any reading yet? Any good books you can recommend?

  4. Leanna44

    Leanna44 New Member

    Thank you for your kind and supportive response. It has been a very hard week as we also had a death in our family.

    I am an emotional person already and have been diagnosed with BP 2, GAD and PTSD. I have a hard time keeping my emotions in check already and this FM is only making it worse.

    I hope that I can find some relief soon as I am so tired and hurting all over.

    Again, thanks for your support.

  5. Leanna44

    Leanna44 New Member

    Thank you for your response. I am sorry that you are in pain. I have not bought any books on FM as we only have one income as I had to quit my job due to symptoms and so there is no money to buy the books.

    I have done some research online about FM and frankly it really depressed me. There seems to be only a few medications that are available to deal with FM and none of them seem to be very sucessful for helping to ease the pain.

    I am frustrated and depressed. Pain is enough to depress anyone.

    Thanks for caring and sharing.

  6. Pansygirl

    Pansygirl New Member

    A warm welcome Leanna. So glad to have you here.

    I'm newly diagnosed but have had symtoms for many years, but it was just in April that FM really decided to stay awhile.
    I'm taking it one day at a time and I 'm still trying to figure out the right mix of meds/vitamins so that I can get the most relief and function.

    My immediate family is supportive but I constantly have to remind them of what I can and can't do.

    This is wonderful place and there is lots of information.
    Everyone is different so find what works best for you.

    welcome, Susan and a very gentle hug

  7. Leanna44

    Leanna44 New Member

    Thank you for your reply. It helps to know that there are people who understand what I am going through.

    Sending you a gentle hug back!

  8. cookie1960

    cookie1960 New Member

    Welcome to all the Newbies!

    I've been coming here for almost 2 years now. I was dx'd with FM five years ago - but like most was sick for a lot longer. This is a great place to come for info and support.

    The way to deal with FM is to come to terms with it and to come up with a plan that works for you. We all deal with this disease in so many different ways. What works for me, may not work for you, and what you are passionate about may be a turn off to me. Listen to your own body.

    Most important - SUPPORT SYSTEM! Your family, friends, and your medical team. If your family and friends don't believe you or don't get it - educate them. If your dr's won't take the time with you or think FM is all in your head - find new drs. Don't waste any time on non-believers.

    I wish you all well as you make your way thru this FM journey. We are here for you.

  9. Leanna44

    Leanna44 New Member

    After crying most of the night and this morning I finally called my doc office and asked them to increase my patch or change my pain med and to give me something to help me sleep.

    I am awaiting a call back from them. I hope that they have some good news about pain relief meds because I simply cannot take this horrible pain no more.

    Thanks for caring and sharing.

  10. cookie1960

    cookie1960 New Member

    Sorry about your sleep issues. I take an anti-anxiety med at night to help with sleep. Maybe you can suggest this to your dr. when he calls back. With all that is going on in your life right now - you could probably use a little help with your anxiety. I take klonopin, but there are many others and most have a generic equivalent which makes them affordable. I know when I don't get my sleep my pain is 10x worst. Let me know what the dr. recommends.

  11. welcome Leanna. I also wake up at 1 or 2 am and am up with the ice pk or heating pad on my back. I had back surgery and am in 10 times more pain after 4 mo. I am sure the fibro doesn't help. Yesterday everything hurt so bad , it was unbelievable a person could hurt so bad. That said I take vicodin and 800 Ibuprophen. I have had fibro all my life and am so wore out from it, it is getting worse as time goes on.

    I hope you enjoy this board.
  12. Leanna44

    Leanna44 New Member

    The doctor did increase my patch from 50's to 75's. He did not offer to give me anything for sleep so I am hoping that the increase in the patch helps me sleep better.

    I am sorry for your pain and discomfort. I am very tired now so I need to go lay down and try to sleep.

    I will keep everyone posted.

    Thanks to all that have replied for your compassion and support.

    Gentle Hugs for everyone.

  13. findmind

    findmind New Member

    Are you on any antidepressants? Many kinds gave me those "jerks"/called myoclonus, and I had to stop them all.

    I really welcome you, and hope you find some suggestions here to help you. I, myself, take Halcion and Xanax; it's the ONLY way I will sleep! Without the sleep to restore our muscle issues, I am in constant pain.

    Have you asked your dr. about the new Lyrica med? Maybe it will help you with the pain.

    Again, warm welcome and hugs,
  14. Janalynn

    Janalynn New Member

    Cookie - you take Klonapin? I was just prescribed that today? How does it make you feel? If you took it during the day would it knock you out?

    Take it one day at a time! You have to. You will go through many stages of grief - anger, denial, then sometimes they'll repeat themselves. Fibromyalgia for Dummies is a good EASY book to read. Maybe your local library has one you can check out.

    As mentioned, sleep is SO important. I'm surprised your doctor hasn't addressed that issue. Make sure you bring that up during your next visit. I don't have to take anything for sleep per se. I take Topamax (same family as Lyrica and Neurontin which I couldn't take), it has helped with my sleep, and has also taken almost all of my headaches away. It's actually very often prescribed for migraine sufferers.

    I'm an emotional mess too today - I go through phases. As a matter of fact I'm so mad at myself. I had my every 4-6 month appt with my rheumatologist today, cried through most of my appt, barely spoke so I didn't ask hardly any questions and don't remember much of what he said!!!! I drive an hour to see him
    So you're not alone there! So during those emotional and painful times, take extra care of yourself - a little extra pampering. One thing you have to do is start putting yourself first and really listening to your body. You've got to take care of YOU!
  15. Kittyweird

    Kittyweird New Member

    Fibro is brutal. I was put on a variety of pharmaceuticals, over the course of three years before I found what helps me. Pro Health, who sponsors this board, has many products to help us!!!
    I got a mattress topper, which helps cushion my body at night. I take a 1/2 pill of cyclobenzaprine and 2 Fibro Freedom capsules at night. Before I starting taking these, I would toss & turn & wake up every 2 hours. During the day I take a Fibro multivitamin, a digestive enzyme, and several Fish Oil capsules. I have radically changed my diet. Organics as much as possible, I've cut out most processed prepackaged foods. I drink a lot of Silk soymilk (it is fortified with omega threes and vitaminD). I eat small meals throughout the day. I work out with stretchy bands, and gentle yoga stretches.
    Hot baths with Queen Helene's bath salts help a lot. I use an electric massager on those nasty fibro knots as well as a thera cane.
    All of this has helped tremendously. I have gone from spending much of my time in bed or on the couch, to being able to do household chores, go out with friends more often, and start selling my art work at art fairs. I still have pain every day and still flare, but my life has improved a lot. Also having the best husband in the worldmakes it all more bearable.
  16. Leanna44

    Leanna44 New Member

    Thank you for all your replies and support. I had my first good night sleep in weeks. I also seem to be having my first almost pain free day in 7 months.

    In my heart I am not happy about being on a narcotic but if I can be functionable and semi-pain free then I am gonna choose to take it for now.

    My pain went from a 9 to about a 5 since the doseage increase.

    My heart goes out to each and every one of you because this FM hurts in so many ways.

    I am here to listen and provide encouragement and support.

    Gentle Hugs,