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I want myself BACK!
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readytogiveup posted:
Hi, I'm new here...been seeing this community for a few months. I was DX with fibro. 1 year ago...had it for 13...just got sick of going to Dr.s and hearing that there was nothing wrong with me according to their test results. I am a mother of 4 and I am in pain. To the point of wanting to just not wake-up sometimes. I feel like a total ZERO. I can't get out of bed without pain..I HATE THIS! My PCP was giving me Lyrica for 8.5 months and vicodin (5mg) This really helped, Vicodin was only for "break through" pain. He was giving me samples and trying to get my Ins. to cover it for me...After submitting a request for it 1 time.. he and the office girls gave-up. (I'm talking about the Lyrica, not the Vicodin...Vicodin I had no trouble getting) I went to a pain management faciity last week and they are trying me on new meds. So far...no good...My Dr. tried other Meds before the Lyrica also and nothing worked like the lyrica and norco combo. Now I am looking at going through this stupid guessing game again and I'm scared because I know this pain doesn't go away easily. My kids are suffering because of this..and my husband ABSOLUTELY does not believe I really have any pain. I guess it's just easier to think that someone who always had at least 2 jobs and won body building competitions became a lazy fat whiner that has to pop a pill to function. I really can't take this anymore.. If this is what the remainder of my life is going to be like...I pass.
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dollbug responded:
Hello and welcome...MiMi in NC...sorry that you are dealing with so much...if you have been here for a while...then I am sure you know that dealing with the wrath of the dragon takes a trial and error process...which does take time and effort.

I would like to encourage you to ask your doctor to check your Vitamin D level...if you have not already done so. Low Vitamin D can cause some of us FMers additional pain and it can also affect other illnesses as well.

I hope you have checked the info under *tips* and *resources* as you will find some good *tools* that perhaps might help you cope better.

Have you tried using heating pads? Are you getting enough sleep? Are you trying to keep yourself on some sort of schedule? Are you pacing what you have to do each day? These are some things which you need to try. Perhaps you need to start a journal and keep up with what is going on with you. This is a good way to see what is causing more/less pain.

Stress is very hard on us FMers...so you must try to lower your stress...sorry that your DH (dear husband) does not understand your pain. I hope you will try to educate and share your thoughts with him. It is really hard for us FMers to understand and so much harder for those who do not feel what we are going through.

The doctors do not understand and family and friends just do not have any idea how much the wrath of the dragon can affect us each and every day.

It is important for you to allow yourself to rest. It is also important for you to get enough sleep at night. Perhaps you can take a hot shower at night using lavender bath salts so that your body can relax, do this right before bedtime.

Have you tried taking any vitamins and supplements?

Things will get better for you. Stay positive and figure out just what your body needs. Remember that we are all different and what works for one may or may not work for you. Hand in there though and now that this too will pass.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Nishswish responded:
never give up never surrender. hi im new here but have this dx to catagorize my issues... easy to say hard to do.
this is so invisible ppl dont get it. sorry your husband doesnt believe. i have been in denial cuz i dont believe it myself
you need to live for your kids and future grand babies. have been given the lyrica and vicdin as well. chin up get some fresh aair. be gentle on yourself. u are loved sweetie and r important
 
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Cormacbolano responded:
Don't give up! Find out if the manufacturer who makes lyrica will help you obtain the drug if you can't afford it. The pharmas all have programs for people who can't afford it.

There are stronger pain meds and other combinations to try.
For instance, I take a very low dose of methadone (can be a dangerous drug if exceed your doseage) and baclofen, a muscle relaxant. Works for me.

Check out FNETNEWS and subscribe if you have to; they have a great medication issue or phone then ask them which issue deals with the combinations of drugs for pain.

You can feel life is worth living if you get adequate pain relief. I hope your husband will support you more. Sometimes that is the worst thing about fibro. My husband (ex) sneered, "you have to take a pain pill to have sex". So what? Diabetic take oral medication. People with pain take medication---no difference. It's an illness.

The new drugs like lyrica and savella have been massively hyped by pharma. Don't overlook opioids (narcotics). They have been used for thousands of years for pain. No stigma. You deserve relief.
C
 
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BetteK replied to Cormacbolano's response:
Some of the best drugs for FM are antidepressants like Lyrica and Cymbalta. Some of the worst drugs for FM are those same drugs.

How did you do on the free samples? Was there a real improvement? Were you on the drug during a flare, and if so how did the flare compare with others when you were not on that medication?

I ask this because the drug manufacturers can claim more than they deliver. As an example, back when FM was first officially recognized, the touted treatment was a combination of Elavil and Flexeril. If you went into the original research, the abstracts sounded promising. However, if you read the whole study, you found that the combo was 16% better than previous treatments. Now 16% better is more than 0% better, but it's not some wonder cure. My father in law used to say that figures don't lie, but liars do figure.

If a trial medication actually helped you, go for it. Call and write your insurance company to get a review of your case.
Call the manufacturer and see if you can get free or reduced cost meds.

Be on the lookout for side effects. Would you believe all the antidepressants make it hard for me to begin urination? Painfull! And over the years, I've tried them all. Believe me, going to the ER to get catheterized so your bladder can empty is no fun at all.

You will find treatment plans that work for you. It may take some time. It may only work for a while and then not work any more. Until we know the complete mechanism of FM, it's a do it yourself world. But, it does get better. One of the ways it will get better is that you will know you and only you are in ultimate control of your care. This is not an invitation to use medications in ways not prescribed for you. It is the realization that only you are in the position to know what starts your flares. Only you can set up a cupbord and freezer of easy meals to serve your family on bad days. Only you can decide on a level of clean you can accomplish and live with for your home. Only you can establish age appropriate chores for your kids to help with. They need the responsibility. You need the help. And it's one of the ways you can gain control of your FM and your live.

BetteK
 
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mybdy responded:
Hi ready,
I can honestly say that I know how you feel. I was diagnosed with fibro. about 10 years ago and it is still very frustrating to deal with. I can tell you that if you know the Lyrica worked for you then tell that pain management Dr. that the Lyrica and vicodin combo. is what worked before and you want to try that first before anything else. If your insurance co. denies to pay for the Lyrica, the office just needs to keep resubmitting it until they agree to cover it. I am an RN and I deal with insurance companies on a daily basis. Lyrica is still "new" and the insurance companies want your Dr. to try an older, less expensive med. first and if that fails they will cover the Lyrica. Sometimes it even helps if you call them for authorization yourself. You will find something that works for you, and once you find it DO NOT let anyone talk you into changing it. I also know this from first hand experience. I have had many ups and downs with this weird, crazy, unpredictable illness and when I go to bed at night, it is anyone's guess how I will feel when I wake up in the morning. I am currently experiencing a flare up that is going on its 3rd week. In my ten years of having this, I have never, ever been this miserable, or in this much pain from a flare up before and I am having a very hard time dealing with it. This is just how unpredictable fibro. can be and it is different for everyone. I am sorry that your husband does not understand yet. It is very important that he becomes familiar with your illness, or at least tries to become familiar with it. My husband at first didnt understand and I took him with me to some of my Dr. appointments so she could explain it to him. He is very supportive when I cant get out of bed for days at a time. It is hard for them to think of you as sick when you look healthy on the outside though. He may just need time. I am new to this community as well and so far I have learned many useful tips to help me during this flare up of mine. It is very depressing to be in pain all the time, but dont give up.
 
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mybdy replied to BetteK's response:
BetteK,
your response was encouraging to me too! It really is helpful to hear about how others deal with their FM symptoms. I know that everyone is different, but just your advice on keeping easy meals available and having the kids help out. I hate having to take pain meds. I feel like right now I am always popping a pill to feel better, but it just makes sense to do it if that is what really helps you.
 
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BetteK replied to mybdy's response:
mybdy, There may be a time when your fibro sorts of levels off. At that time, you may be able to cut back--slowly--on some of the meds with your Dr's help. It may seem that you are popping pills all the time, sooner or later though a new med will suddenly make a big difference. Then,. if you slowly remove some of the old pills, one at a time, you may find that you do not need some of them.

There may also be times when you suddenly need more meds--lots more. That's normal for fibro too. However, that new normal may not last forever, and you may morph into a much calmer, gentler FM with fewer meds needed.

I've had several surgeries over the years. Some of them were probably unnecessary and FM related. All of them were shocks to the body. All of them were followed by major flares. But the flares went away, the fibro got more managable, and life got better.

There will be better days. Enjoy them. Treasure them. Use them to do the things you really want to do--not the things you think you should be doing. Ten years from now, you won't remember those cobwebs you vacuumed up, but you will remember the day you spent playing with your kids. Hoard your energy; save it for the things that matter.

Towards better days,

BetteK


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