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How bad does fibromyalgia get?
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dazndav posted:
I've been pain for over a month now. I feel like I'm dying. I get up and clean, take care of my children. But that's all the energy i have. I get them to school and then go back to sleep, even thou i get almost 9 hours of sleep a night. It feels like someone is constantly stabbing me, my foot i have to wrap tight just so pain will stop. I have the worse chest pain & back pain. The headaches are so bad that nothing helps. I just want days of freedom. . I'm forgetting everything. I've been using bengay since I'm allergic to all the medicines the doctors gave me. It's depressing that I'm unable to get up and do things like i use to. Is there any way i can get more energy and reduce the pain, and be more awake. I sleep over 12 hours a day. I've been diagnosed 2 years ago. At first i thought i was crazy, the pain wasn't there, my brain was making it up. If anyone can help.

Note: I'm allergic to almost every medication out there. I use only Aleve, Bengay, & tramadol.
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jillwimmersbloom responded:
I am still trying to find ways to raise my energy levels but I do have some suggestions for pain. Have you tried heat, ice, or a TENS unit? I find those all work for me, they dont take the pain away but take the edge off. Personally, I dont like Bengay but prefer arnicare gel or bio freeze. Stretching is very important as is some kind of exercise every day (walking, yoga etc). I also have two young children. I can understand the frustration that comes with not being able to do the things you want to do. Have you tried any vitamins? I am not familiar with the different suppliments but I recently started Fibro Response. I havent noticed a huge difference yet (started on monday) but it contains several vitamins that are recommended for fibro.
 
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Anon_2912 responded:
I use B12 for my energy. I have been on B12 for the last 5 years. It helps me.

Have you also been tested for thyroid issues?
 
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meg_k replied to Anon_2912's response:
MiMi woudl tell you and I will agree, get your Vit D levels checked and if they are on the low end, start taking supplements. This can help both your pain and your energy. You may have to take massive doses to get your Vit D levels in the 50-60 range. There are ways to feel better than you do today...you won't always be this bad. Hang in there.
 
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missist responded:
Hi.. how much aleeve are you using? If it helps at all-- you may want to up it--at least for a while & be sure to take it 2x a day--every day.

What else did the Dr give you that you were allergic to?

*the advice on aleeve--is if you aren't taking a max amount. Your doctor can tell you how much is too much.

Have you tried celebrex? I use it and it is wonderful. but also spendy.
Mary
 
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missist replied to Anon_2912's response:
B1 is great too-- I did that for a kick start, and was amazed. Now I just take a B100 combo pill.
 
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missist replied to missist's response:
Oh also-- these ladies are right-- D & B are a big help--it takes a while but it does take a layer of pain off.

I don't know what you are allergic to- but there's probably things that can help.

** How bad does Fibro get? Hard to say-- for me it was the worst when I was in my 30s & had little ones. My 'everything hurt' all the time. Now it is much better, but still debilitating.
Mary
 
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bette_kaffitz responded:
Dazndav,

I bet your fibro is worse when you have your period, when it's damp outside (summer or winter), when you had something extra special to do for your family, if you were worrying about something.

Fibromyalgia is a twitchy/touchy/feely thing that gets worse whenever our bodies are stressed. The trick is to find little things that you can do to help de-stress your life. (The others will probably moan, but remember to take a warm bath or shower every morning and every night--that's my biggie.) Check out some books from the library on ways to meditate, do yoga--gently, of course--breathe deeply, and any other technique that sounds good to you.

Perhaps you need the help of a mental health counselor--not because you're crazy, but because you're dealing with a chronic illness that can make anyone depressed. A GOOD therapist can be a big help with finding ways to de-stress, too.

If you can use Bengay, maybe you can also use the Lidoderm patches. They have helped me PREVENT some flares that I knew were coming. In any case, your doctor should know how little relief you are finding from your current treatment. As you can tell by reading the tips on the right margin here, not every help is a medication.

As you have discovered already, heat is a great healer. Whether you wrap yourself in a quilt, use a heating pad or one of those microwave pouches, or smear yourself with Bengay heat does relieve a lot of our pain. One wonderful way to get your whole body in this blissful state is to do aquatic therapy. Many hospitals and physical rehab centers have these great pools where no one swims but everyone gets to stretch her/his muscles gently. Ask your doctor about this.

I found that accupuncture really helped, too. So does a tens unit. (About $40 at a chiropractor but big but several hundred through a physical therapist. Either one could give you a trial of a unit so you'd know whether it worked for you.)

Yes, there are days when you will feel awful, but with a little work on your part, those days will come far less often. You'll see.

Bette
 
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missist responded:
I used to get really bad headaches too, but haven't for a long time. I would take a tylenol, an ibuprofen and a cafeine pill and 1 bendadryl--so 3 different pills but only one of each.

You could probably skip the ibuprofen if you are already taking aleeve. I would take all that and go lie down someplace quiet and dark. I would fall asleep but it actually worked. Sounds crazy I know but I think there are different things working to cause the headache so somehow taking that 'coctail' of stuff worked.

Again--it is what I did, but I'm no doctor.
Mary
 
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bette_kaffitz replied to missist's response:
Mary's right about the combination of drugs to fight your headaches. I used a store brand similar to Excedrin Migrane. It seemed to cut the headache time and intensity both down more than half.

Because you have had problems in the past with medications, you may be leery of trying this combination of aspirin, tylenol, and caffeine in the one pill, but it does work. My neurologist got me started on it. There are also prescription meds that can actually prevent a migrane. Again, it is up to you whether you wish to give it a try.

FYI, my headaches went away when my heavy glasses did. It took having LASEK surgery to correct my 20/400 vision to 20/20. They fixed it so my right eye is for close work and my left is for distance. They work well together and I rarely notice any difference unless I read for a long period.

Hope all of this info from all of us gives you something that will help.

Bette
 
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nononsenselady responded:
At least you can sleep! I have tons of pain and headaches and a host of other ailments plus go to bed at night and can't sleep all night. Which just makes more painful the next day and the next day. The doctors won't give me ANYTHING! I'd give anythin for sleep!
Laurie
 
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missist replied to bette_kaffitz's response:
Bette--so glad you mentioned the glasses. My son-in-law is legally blind and has coke bottle lenses. He says he thinks the glasses are giving him migraines so he wants to get contacts again. I will mention lasik to him too. I wonder if they can do that with him. Glad that came up in the course of all these replies. Mary
 
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missist replied to nononsenselady's response:
Hi Laurie-- just read your reply here to dazndav. Sleep is so important!! Like number one issue I think with fibro. Why don't you start a little thread going with that issue cuz I know a lot of us have solved it. And we can maybe give you a bunch of ideas to try. Meanwhile--will add you to my prayer list too.
Mary
 
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booch007 responded:
Good morning,

I always hope to think that FM is at its worst when you find this board and it gets better as you learn the tools to help yourself.

See how Bette told you her trick to help her headeache....that is what the TOOLBOX is in resources and anyone can put their tools in there to share.

It is pages long but worth it to learn how to survive.

I told the neurologist when I get a headache....I treat my neck, he said that is great thinking.....Now in saying that I would use a hot rice pak to the back to lean on and be in a recliner and place my hands under myself to straighten the muscles of the neck. I would take Motrin and my muscle relaxant (Soma) and go to sleep. I would awake in a better place. If it didn't work then IN the shower to wash my hair and heat up the scalp and the neck and massage with a soapy mix.......

Sorry we are all so different yet the same*. Everyones bag of tricks is different and our meds too for so many reasons. I will share with you that savella at 12.5mg (tiny tiny dose) made all the difference for me. I don't know what you have tried and failed. But maybe one more thing can be attempted?

I use Tramadol and Soma and Savella. Also taking 250mg of Magnesium twice a day. Vit D 2000 units and CoQ10 200mg.
Vit B Complex. Only water as my hydration at that MADE A HUGE change in me. So that is my bag of tricks.

Most people are dehydrated, even the healthy ones. So concentrate on refilling your tank (this take time as the kidneys will dump most in the begining) Pee more but you get that tank hydrated and "lubricated" and I know better. dehydration makes you foggy too....

I do so hope you figure out something better. Sorry it is a trial and error issue though. I had a terrible time with Neurontin and Cymbalta(near died i felt with Cymbalta....) I was so hesitant to try the Savella and it was the BOW ON THE BOX. I hugged that doctor so tight! I do hope you get this figured out.........

Take care, Nancy B
 
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bette_kaffitz replied to nononsenselady's response:
Nononsenselady,

Have you talked to your doctor(s) about not sleeping? Sleep is such a big part of your health. One of the things I swear by is my generic of Ambien. It really works, especially at first.

Good sleep hygiene helps too. Try to go to bed and get up at the same time each day. Take a warm bath each night--or at least a shower. You can shower in the morning for your hair, but your evening bath warms you and relaxes you. Do not use your bedroom for anything but sex and sleep. (Hey, that's what the "experts" say.) If nothing works, you need a sleep study to find the problem.

This is not some little thing. Your body repairs itself during sleep. People DIE from lack of sleep. Find out what's wrong.

Bette


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