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    I am new to the Fibro Family & this sucks!!!!
    ladysparkle posted:
    I have been sick for the last six months and it has been hell I was tired all the time and in pain then when I got in the bed no sleep came so the doctor had me on all these pain pills then when she finally gave me a diagnosis she takes me off the pain meds and gives me muscle relaxers to sleep I went to the DR on 01/10/14 she gave me Cymbalta and Celebrex which the co pay for the drugs are so freaking high I can afford them and I am working so I medicate my self with pain pills all day just to make it thru !!! I need help on the outside I am smiling in the inside I am in pain and frowning. Any help that anyone can provide will be great
    booch007 responded:
    Good morning,

    Yes it is a mess we are in, but it can be better with doing so many things. Look to the right is the resources section. Alot of information is there. If this is truly FM just know that at this time it is hard to be PAINFREE.....that is a rare occasion. For the most part we just lower the volume of pain to have a bit of life.

    In the early part of my journey I used a journal to mark my symptoms and what I did to help myself. I used many non medical therapies like heat and stretching, massage and hydration. DISTRACTION . Finding my triggers for worse pain was momentous to help me learn a new way to do things. It also showed the doctor how hard I was trying to fix myself. It validated my story and efforts. Increased her helping me to accomplish the same.

    If you walk in and just say "I am in pain" and look for a perscription to makes it look bad and you will be disappointed. Our answer is multifaceted and NOT just in a pill put in yor mouth.

    Like I said it is a journey. We are all different and many disappointments came our way when in the trial and error med category or even the match of a physician that gets it. That part of this I think was worse than the pain and stiffness I had. It killed my spirit to keep looking. But persistance pays off.

    I got my meds right after meeting the right doctor who knew exactly what was wrong with me, and I see a neurologist.

    Don't be too discouraged. It is a process and the best thing is you found this site! Not being alone is the best medicine, you are not crazy, you can now use the group to help tune your toolbox with things that can help you.

    Good luck on this path. Tell the doc about the copays for the meds and maybe she can switch meds to a different one in that class. Cymbalta is a SNRI (seratonin norepinephrine reuptake inhibitor) There are many in the class that can help. Not all here use that one and do better.

    Same with the celebrex, we are not an inflamatory process but we do use pain assistance. Often Tramadol or Ultracet. I started with Motrin and did well until bleeding was a side effect and moved to ultracet........better.

    All I ever asked for was better. I knew fix was not going to happen. It is over 15 years that I fight this with all my might. I will say this is the best year yet! It can happen.....

    Good luck, we are all with you....................Nancy B
    missist replied to booch007's response:
    Hi- if cymbalta & celebrex DO help you-- you might want to try these:
    Nortyptiline -- older tricyclic that works on serotonin and noreprinephrine and is very cheap.

    Aleeve--generic-- works ok. Not quite as great as celebrex but a heckuva lot cheaper. (also if it does work you probably have some kind of inflammation--it works for me--I 'think' my inflammation is in the muscles, just my opinion as there is not test I've had that shows what it is--but I do have osteo arthritis and degenerative disc--so it may be it helps that and that helps the fibro.)

    A nerve pain drug---Lyrica is the 'trendy spendy' one. Gapapentin (generic neurontin) works fine and is super cheap.

    God Bless,
    ladysparkle replied to booch007's response:
    Thanks for the response it feels great to get some more information now I can call and ask her to provide me something more affordable right now I am just making my way today was not a great one but I listen to my body and stayed in the bed hopefully rest will help
    ladysparkle replied to missist's response:
    thanks for the response yes I have ostero arthritis as well I will be calling the DR on Monday asking her about these meds. After a long week of work I am no good I have to sleep all day on Sat just to try to get my self to a point where I can work, thanks again
    bette_kaffitz responded:

    This has been a rotten time for you. Please believe that it does get better. Bear with your doctor and be willing to try whatever meds she prescribes. Be alert to any side effects. It is all too common for us to be super sensitive to medications. This may make it take a little longer to find a mix of treatments that works for you. Try to be patient. It is a process.

    In time, you will get your sparkle back. In the meantime, try to make things a little easier on yourself. Don't worry about your messy house (except for food safety); get a simple routine for hair/makeup, etc.; cook extra on good days and freeze the rest for bad days; find comfortable clothes that look good on; buy yourself some shoes that do not hurt your feet; recognize that there will be bad days and prepare for them.

    Your doctor should be able to help you plan for bad days. In addition to your regular medications, you should also have some that you only use during a flare. I have sleeping pills (Ambien) that I use that way. Some of your pain meds can be safely increased on a very bad day. Ask your doctor to help you plan for these days. (When I was younger, they often came with menstrual cramps and were hormone-driven. I could plan ahead with extra water, an extra hour of sleep, super simple dinners, and my extra flare-only medications.)

    Part of the terror of fibro is knowing that it will act up and not knowing when that will happen. By having your "emergency kit " ready for those times, you can take away the terror and the feeling of helplessness. I liken it to having your suitcase all packed in your 8th month of pregnancy.

    I know that things will get better. Just try to be patient.

    Bette (still patient at 70)
    ladysparkle replied to bette_kaffitz's response:
    Thanks again that's just it the doctor said you should be glad you have FM instead of Lupus gave me some papers to read and 2 prescriptions and sent me on my merry way !!!! OK so now I am like so now what ???? I can't talk to my kids, my friends everyone just think I don't want to be bothered or I am just stressed out or maybe I should take a drink of wine you will feel so much better WRONG !!! WRONG !!! I am not stressed !!! I am in so pain I don't have the energy to party like a rock star and if I take a drink I am in so much pain the next day its not worth it but thanks a lot guys I am glad I have you all my FM Buddies at least you all know how I feel Thanks Again I am current looking for another DR in the DC, MD Area if anyone knows of one let me know.
    missist replied to ladysparkle's response:
    1. Dr made a really rude remark there--but that is not out of the realm of doctorness.

    2. Fibro can be as life changing as lupus--and in a way--if it makes you immobile can also lead to other issues that eventually could kill you--so get the help you need to get as fit as you can. My own mom died too young and fibro was part of her problems.

    3. it does get better in time as you learn to pace and get the right mix to help you. I have not spent a day in bed due to fibro in 20 years; the first years were the worst for pain and fatigue and depression. Not saying I'm all better--but I have learned a lot about dealing with it and it just plain is not as bad now. Its still difficult though.

    God Bless and I dont' blame you for looking for another DR. i've changed a few times over the years due to dr jerkness syndrome too.

    debrabrooks1960 responded:
    Dear Ladysparkle,
    Extreme tireness and pain was my first symptoms that something was wrong. That was 2 years ago. I find that hot showers are my best friend. Plus heating pads are wonderful, especially in cold weather. I also use a roll on medication called Stopain. You can get it at Walmart for around $8.00. It comes in a roll-on and a spray. Just put it where it hurts and it works great on making the pain go away. Things will be better ffor you. Just do not give up. I have gotten so many wonderful suggestions from everyone here. It is a good place to vent, to brag or just to chat with others. I do not know how I would have survived without this website. Good luck and you are in my prayers. Please keep in touch so we will know how you are doing.

    Soft hugs,
    Your not over the hill until you are under the hill.
    nononsenselady responded:
    Hi ladysparkle,

    I was on hydrocodone, anxiety pills and halcion (sleeping pills) for 3 years until my husband sent me away to rehab to get me off of them. I thought they were helping my pain but now I realize they were really making it worse.

    My doctor tried Cymbalta but that sent me to the Emergency room with the doctor thinking I had gall bladder problems. Now I am on Gapapentin which has very slowly helped. My pain and aching were so bad that I would curl up in a ball and just moan. I then came up with the idea of a TENS because I had used it on my lower back for back pain. It has been my saving grace! I absolutely could not be functioning without it. I have tried a few times to go without it and I feel like I have a bad case of flu. You need to have it prescribed by a doctor but it is wonderful. At least it works for me. Just a suggestion.

    meg_k replied to nononsenselady's response:

    I want to add to what everyone above is saying. There is hope and you won't always feel as bad as you do today. You may never feel completely 100% again, but you can feel better -- a lot better -- once you find out what helps your body and a lot of the tips above are excellent ones!

    I don't think anyone here mentioned it yet that I can see in the above responses, but please get your vitamin D levels checked. This is the single most important thing I've done to feel better -- this has helped the most.

    I am not a doctor, but I can tell you what I understand my doctor told me. If your vitamin D level is below the 50-60 range, take supplements until you get to that range. You may need to take 5000 IU a day in order to get your levels up. This helped both my pain and fatigue tremendously.

    MiMi from our community is the greatest advocate for this, and I agree with her! Also, there is research to support that this helps us.

    Best wishes & soft hugs,
    Meg from Minnesota

    Helpful Tips

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