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Old 03-05-2010, 10:56 AM   #1
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Trying to cope with Fibro but failing, need suggestions for any remedies etc, Help!

I have had Fibromyalgia since I was 22, and it began after a very bad car accident and has progessively gotton worse, especially after having my 2 daughters. I am on so many pain/anti seizure/nerve meds and fear for my kidneys and liver. Also I have more recently been in a deep depression and have severe anxiety about leaving my home and other situations for fear of being in pain and uncomfortable, and I am so forgetful.
I recently have been feeling that I am holding back my family from enjoying life and the guilt has been weighing down on me. So I would just like to maybe find some support, which I really don't have now. There isn't a lot of understanding from my husband, regretfully, but he and my two little girls just don't understand. I am grabbing at straws, looking for some advice and suggestions for some natural remedies, therapies or medications that have helped others. I have felt very hopeless given that I will be living this way for the rest of my life, and don't know how to improve the quality of life for myself.

 
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Old 03-05-2010, 03:10 PM   #2
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

Tasia, I am SO SORRY you are having such a rough day. We could have been twins separated at birth. I know how you feel. Your illness does keep you still. Being still and being there in this nonstop world is different, and good can come from that difference. For me, the first medical onslaught in my life kept me too sick to pursue a divorce--a divorce I would have regretted because the "problem" got solved. I would have lost a great dad for my kids and hub for me. Being dependent on others may be allowing your kids and hub to better bond. He may little bit by little bit become a man of compassion. That, too, is a rare find and a valuable trait that doesn't come easy. You may not feel up to helping anyone else right now, but know that your horrible experience is building a depth in you that is unparalleled. My father-in-law was always strong and never tolerated weaknesses in his family. His last five years he was very sick and unable to do for himself. I could work with him because I so understood the loss of health and what it does to you mentally. All I'm saying Tasia is that character is being built in your pain. People around you can gain skills that never would have been afforded them had that not had your pain in their lives, and that includes you.

Magnesium (water soluble like the calm product by natural vitality), vitamin d, malic acid, a good all-round vitamin like centrum, fish oil, folic acid -- that's some of the supplements I take and have learned about on this site. I'd say magnesium is the most important.

Lyrica is a very good medicine that a pain specialist or rheumatologist can get for you that treats FM, but study it first and make sure you are up for any possible side effects. I could not continue to take it because of severe constipation but it was a miracle medicine for FM. Older but tried and true drugs are amitriptylene and flexiril -- very inexpensive and they help.

Tasia, they are coming out with new studies and drugs every day. Most who get FM gradually see an improving of their systems the longer they deal with simply because they learn more and more what can be done. Do not give up, kiddo, because there are a lot of things you can do now and there are a lot of promising things to come. Take care.

 
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Old 03-08-2010, 09:29 AM   #3
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

I am on Lyrica and Savella and it controls the pain really well. I also have more energy after starting the Savella. I have been on Lyrica for 3 years and on Savella for 1 month.

It sounds like you are depressed...are you on an AD? If not, that may help...I was on Cymbalta and now have switched toSavella. They are both AD but also work on pain.

The B vitamins are good for nerves and energy...so you may want to try them for a natural cause. A bit of exercicse can help also and maybe you can do it with your girls and/or hubby???

 
Old 03-08-2010, 10:44 AM   #4
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

I too have FM, since I was 12-13ish. I won't lie, I still struggle with it. I tried Lyrica and it worked great on my FM. but I could not tolerate the side affects. I had adverese reactions. So over the years, I'm 27 now, I've learned from the many, and I do mean, many, doctors I've seen is that Folic acid, Vit D, and Magnesium are key ingredients, but just a piece to the puzzle. Also, staying active is critical. I'm not saying run a marathon. But the more you stay in bed the worse it gets. so try to walk around the block once a day. or whatever you can cope with right now and slowly. SLOWLY, up your activity level. You'll be surprised what the body can adapt to. Thats what I try to do. If anyone has more or better advice I would love the input. Everyday we fond new means to treat people. so if anone knows something I don't, please share. Good Luck to all.

 
Old 03-08-2010, 07:01 PM   #5
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

i hear ya! for me the less i moved my body, the less i went out side, the less i reached out the worse it all got, until i was on 11 drugs and could almost not leave the house. i did CBT 3 times a week ( i went meat, refined sugar, and glutin free (took me 7 month to do it), now i'm on 2 meds and feel allmost human agin. you can and will get better. i had to make hard changes--- but i read everything and it slowly has given me 70% of my life back. and look good to!

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Old 03-09-2010, 05:28 AM   #6
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Smile Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

Hi, sorry for all the misery, but, they say it does love company, so here we are. I would first get help for the depression and anxiety, since both of these will only add to your pain. I can only speak from my own experience but, for me learning to accept my limitations realizing I cannot control them, then adjusting all else around that has helped. I have learned to me first, not in a selfish way, but understanding that if I do not I will be no good to anyone. I have simplified my belongings, less to clean, cooking, always have simple easy meals, use paper plates if you can't keep up on dishes. Make list for the forgetfulness,( fibro-fog) organization helps alot, try to make your shopping one stop. I'm sure being a young mother makes all these things that much harder . But, I assure you the kids with do without less toys and outings in exchange for some good quality mom time. Reading a book or taking a nap together., even picking up the toys or helping clean the house. If your husband has trouble understanding, look for a post on here by Bluelakelady called My Name is Fibromyalgia, it describes how we all feel. I wish you all the best, remember to take care of yourself, I was a young mother once who didn't. I put everyone else first, I do have two wonderful children, but, at times they missed out because I didn't care for my own health, and even though an accident ( broke both ankles in 4 spots) advanced my illness, I truly feel years of not getting treatment for severe anxiety/panic disorder has added to this misery of fibro. Sorry for running on so long, hope today is a good one. Kay

 
Old 03-11-2010, 07:39 PM   #7
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Cool Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

I feel bad for all of you that are suffering from Fibromyalgia.

I have had Fibro for 7 years and am virtually symptom free. Many of what you have said is actually good and works wonders. There are, however, a couple things I will suggest as being critical in overcoming this ailment. The 2 most critical things to be taking are at least 600 mgs of Co-enzyme Q-10 each day. Split the dose up--200mgs in the morning, 200mgs at lunch, and 200mgs in evening. This will do amazing things in repairing the mitochondrial damage in each cell of your body. Malic acid is the 2nd most important thing to take. The best way to get this is to juice apples (along with any other fruit) 3 times daily. If you can't juice, then take malic acid in pill form 3 times daily. Then magnesium, NEC, 5-HTP, Dhea. While you are doing all this, if your flare ups are really bad, put an ice pack on the pain trigger area. They do have elasto gel vests that you can freeze.
Just put that on and the pain will quickly subside. Please try this.
Take care to all of you.

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Old 03-12-2010, 07:18 AM   #8
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

I can tell you what I did with my husband, and he was "sort of" compassionate but did not understand at all becasue I don't look sick. I blew up and told him that I would have research the world to find out what was hurting him and that I didn't appreciate the fact that he hasn't even tried to look into something that causes me so much pain. I e-mail him all the symptoms of pain/emotional and mental fog that come with this disorder so he "had" to read it. He came home that night apologizing. He told me he had no idea what this was about and would be more understanding. It's been a week and so far so good. I wasn't looking for his sympathy and I try so hard not to compain all the time about being in pain so he really didn't know how much pain I was in. Hopefully you can do this and he'll read about the stuff you have to deal with on a day to day basis and you'll get a bit more support. I hope so honey. God knows we all deserve it. As far as dealing with the pain goes, I can't help you because I'm still trying to get a handle on it myself.

 
Old 03-12-2010, 09:15 AM   #9
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

what is NEC? Where do you get it, Q10, 5htp, dhea, malic acid? How do you juice apples exactly? I hate apple juice, but can tolerate an apple. How many apples a day would it take?
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Old 03-12-2010, 02:11 PM   #10
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

I do massage every 2 weeks and it's a lifesaver..i take a vitamin drink
i take malic acid everyday and magnesium...you need atleast 800 mg..they say people with fibromyalgia are lacking in magnesium and it helps my muscle pain..and even a light walk twice a week helps...

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Old 03-13-2010, 12:30 AM   #11
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

Oooops. It's NAC (N-Acetyl Cysteine)!!!

r don't want to juice apples, just take the malic acid pills. You can juice apples with any number of other fruits and veggies. If you do juice, you need to drink the juiced drink as soon as you juice it. Do not let it sit past 5 minutes. The wonders of juicing come from the fact that you are drinking "live" enzymes. Drink it right away. Store bought apple juice is nothing like fresh juiced apples. You may like the fresh stuff. Apples contain malic acid--an apple a day keeps the doctor away. There is a reason for that phrase. Hope you are feeling good soon.

 
Old 03-13-2010, 05:27 PM   #12
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

Hi there! I understand your misery - been there, done that. I am on the guafenesin protocol. This protocol is very effective (I'm beginning to sound like a broken record on this board, but oh well). I went from almost bedridden to healthy within 5 years. Read "What Your Doctor Won't Tell You About Fibromyalgia" by Dr. St. Amand.

Kirstee

 
Old 03-18-2010, 05:46 PM   #13
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

Baserockermom

Thanks so much for taking the time to get back to me and give some great advice. I just need some support from people that understand what this disease is and is going through it.
Today I was fortunate to go to the dentist for a broken tooth, urgh... and my dentist decided to give me his words of wisdom, lol and tell me that FM does not exist and he can fix me in a year with a mouth gaurd. The last dentist already tried that one, so no thanks. What a jerk.
I am so thankful for anyone that responds because I know the way I feel somedays I don't even check my emails nevermind get a chance to write to a stranger. I must say that one of the things that makes this all worse for me is that I don't like to leave my house, with the pain of the years I have indirectly caused myself to be "agorophobic", meaning I don't leave my home more that once a week. It is as if the FM affects so many things and the judgement you receive from the people around you just makes you feel worse.
I just am so tired of being told by the inlaws and others to "just get up and do it", whether "it" is in reference to exercising, going to a party full of strangers, shopping ... anything. Really if it was that easy I would have done it ages ago. Being this way hurts me and my children more than anyone, and they don't treat me that way.

Also does anyone have suggestions or experiences with a large weight gain due to the inactivity or the meds, resulting from FM??? This is my experience and short of going on a liquid diet I don't know what to do. I have been on baclofen, similar to lyrica and I know water gain is a side affect, but not 40 lbs worth!

 
Old 03-18-2010, 05:47 PM   #14
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

Thanks Kirstee for the the suggestion. I will check that out.

 
Old 03-18-2010, 05:50 PM   #15
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Re: Trying to cope with Fibro but failing, need suggestions for any remedies etc, Hel

nn35

Funny I am actually alergic to apples, and all other orchard fruit, so I would be lacking in many things from that area of the fruits. Thanks for the advice!

 
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