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So glad I found this group
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precious_52627 posted:
This is my first time here, and I can say I am overjoyed that I have found this group. I finally got my diagnosis last month after 3 years of tests, speacialist, and my doctor not wanting to make a diagnosis. After reading through some posts, I am surprised how some of them could have been written by me. The muscle pain, the deep down bone pain, the fatigue, burning muscles, eye problems, dizzyness, stiffness, I didn't realize all of this could be from the FM. I have started on Meloxiczm and Tramadol, this seems to help a little but is there any help for the fatigue? My insurance company has a support nurse that called and talked to me about diet changes (glueten free, no sugar, no caffeine) can anyone tell me if these changes have made a difference for you? I look forward to hearing from you all, and thank you all so much for being here.
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katmandulou responded:
Hi precious_52627, and Welcome! I hope you'll find us fun, funny and full of help. I was dx'ed nearly 7 years ago after just a year and a half. I'm lucky, and I have very little pain most of the time.

We all have different symptoms, triggers and meds. What works for me might not work for you. My rheumy is very flexible with meds during flares, and I've never felt over- or under-medicated. I'm on elavil and have Tramadol when I have too much pain.

I'm impressed that your health insurer has the support nurse, and I hope this will make your journey better. It has been suggested that if I ate a low-acid diet, I'd feel better. The downside? I'm addicted to a lot of high-acid foods, like bread, cola and candy. 8-(

Keep coming back, we're full of surprises!
Have the best day you can possibly have,
Lou
 
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blessingstoyou responded:
I am surprised that you've had only 1 reply til today. No one wants FM, but getting a diagnosis was such a relief, knowing that I was not experiencing all the pain, fatigue, memory issues just because I was a bit overweight and out of shape. For me, taking Lyrica decreases the overwhelming fatigue and pain that would incapacitate me. I still have some fatigue and pain, but at a level that I can cope with and have a somewhat "normal" life. I do need some additional help for sleep, and take a Tylenol PM, but will be discussing taking something else that may not elevate my blood pressure like the diphenhydromine does. I have a lot of medicinal sensitivites, and hate to take and try new medicines, as I tried Celebrex with the Lyrica, and had less pain in my joints, but had dangerous side effects. It is a try and try again for quite a while to figure out what works for each of us. I have been diagnosed for about 10 months. Wishing you well as navigate your journey to getting some relief.
 
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1975transplant responded:
Greetings Precious,
I agree that the fatigue is the most frustrating part of having fibro. I can tell you what has helped me the most, but as others have said, what works for me may not be best for you.
I think good sleep is the most important, so something stronger than Tylenol PM will probably be needed. I also find an afternoon nap helps more than longer night's sleep (longer than 8 hours).
Being able to start the day without pain helps you to get going. I take Gabapentin first thing in the morning and by the time a shower is done, it is working. (I take it three times a day). Then after the shower I can do stretching exercises which surprisingly give more energy.
Vitamin D is very important to help with fatigue. I gradually worked up to 5000 IU a day. Starting at too high of a level was upsetting to my stomach. My druggist also suggested vitamin B50. I take two of those a day.
I also sleep with Oxygen at night which has significantly increased my energy and helped decrease "foggy brain".
As for diet, I avoid, Caffeine, Aspartame, and potatoes. I tried Gluten free, but am allergic to the soy that is so often substituted. So I gave up on that and am content with whole grain products. Using whole grain and avoiding potatoes helps to cut down on that "sugar rush" that accompanies processed white grain products. Eating a protein such as nuts with a carbohydrate helps too to slow down the absorbtion of the grain product, helping avoid too much sugar at once. The reason this was suggested is that if you have a rush of sugar in your bloodstream, your body produces more insulin to get it out and then you are tired again.
And when you're tired, you reach for food for energy, right? Just watch that what you are reaching for is nutrition for you and not empty calories.
I hope this helps a little. Best wishes in your life style changes. By the way, try one thing at a time, or you won't be sure if it is helping or not.
 
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Leila2012 responded:
I'm unsure about all the food recommendations that I have heard and read. Maybe I have to be more strict and could have less fatigue. I found that I get more tired after eating a sugar heavy breakfast, like pancakes traditional style, and process foods with bleach flour, etc. But I think that happens to anybody. Before, I left out those foods because it gave me acid indigestion. So now, I almost always use whole wheat, brown rice & multi grain breads and pancakes made of multi grains, oatmeal and sometimes I add sweet potatoes or pumpkin, with low sugar syrup of course. I use Splenda with a little bit of brown sugar for the taste in my coffe.



I do drink coffe with low or nonfat milk & soy milk every day, 2 mugs in the morning because its a habit I wont live without. I traded it, leaving Coca Cola instead, which I only drink as a treat on occasions, maybe once a month or two months. I always drink a lot of water each day.

Regarding gluten, it feels better and lighter to eat foods like that, especially cakes and the like, but I have no problem eating whole grain bread or pasta.

I lost my job due to the FM, because the extreme fatigue, stiffness and insomnia made it impossible for me to get on time to work. I couldn't get out of bed in the morning and couldn't get to sleep early or for more than 4 hours at a time, so I was on the bridge of collapse with stress, which made it even worst. Now I work freelance from home and sleep better, but still not great, like I used to be 5-7 years ago. I tried a lot of medicines that did not work properly or had bad side effects. Now I'm with Cymbalta and Celebrex daily, with a little aide from a bit (0.25 mg) of clonopin.

This is trial & error all the way. We're all looking for the right combination.
 
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Leila2012 replied to 1975transplant's response:
I'm curious. You take Gabapentin three times a day? I took it for six month after surgery for a broken ankle and it helped me a lot. Now, with FM, I used to take it two times day at first and then at night, for the past three months and helped stop the shooting pains I had in my legs and arms. Then I left it after I felt better about those symptoms and did not find any more change. (I try to avoid overdoing medicines whenever possible and/or prevent getting immune to its benefits). But now that I read your post, I like to know for how long have you been taking Gabapentin? And does it help you with fatigue?
My Neurologist said I wouldn't help much, but my Rheumatologist and Physiatrist physician both think it helps.
 
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Luci1983 replied to Leila2012's response:
Hello - I'm new to this, but wanted to comment on your post. I was first diagnosed with FM June 2011. I had been dealing with symptoms for years, but it finally got really bad in the winter of 2010. Anyways - my rheumatologist had me taking 600mg Gabapentin 3x's per day. While it did seem to help with the tenderness in my arms and legs, it also had very bad side effects for me over time. My depression got severely worse, I gained 30 lbs (probably because of the depression), but also I was severely tired and falling asleep sitting up at my desk @ work. I fell asleep trying to text, or send a fax. I did find myself eating sugary things to stay awake. I am now on Lyrica and the tiredness is gone, and my depression is back to being well managed. I think someone said it before - everyone is different; and what works for one, won't necessarily work for you. I just wanted to express the issue of fatigue, and how it made mine SO much worse. I didn't have energy to do anything. I am lucky I caught on before I lost my job, or something worse. Take care.
 
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albizia replied to Luci1983's response:
Hi Luci1983, i have suffered with Fibromyalgia for 18 years and when i tried taking Lyrica it made me feel so sick that i had to stop taking it. I am trying Norspan patches at the moment but
they make me so constipated so i am not sure what i will take next, i guess it is trial and error. Take care, from Raylee.
 
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Kinkatia responded:
Cutting out sugar and caffeine has helped me immensely with the fatigue. Caffeine is gone so completely that I don't even eat chocolate anymore. And by sugar, I mean everything with sugar, high fructose corn syrup, evaporated cane juice, etc. Honey works well as a substitute.
 
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1975transplant replied to Leila2012's response:
Sorry I didn't get back to this sooner. (A bad week with a son with a shattered arm bone). Anyway, to answer your question about the Gabapentin. I had been taking it once a day for a long time (several years). Then I had to quit taking ibuprofen 3 times a day. That's what I was relying on to control the fibro pain. I had to quit the ibuprofen because it was putting my transplanted kidney in jeopardy. So I had to find a substitute. The way I understand it, Gabapentin helps your brain to reinterpret the pain signals, so they don't stop you even though you still have pain. Does that make sense? Anyway, I asked my doctor to increase the Gabapentin. I looked it up on the internet and it said it should be taken three times a day. At first he didn't want to give it to me first thing in the morning, because it makes some people sleepy. But I was in agony waiting until afternoon to take it. I had to beg to take it first thing in the morning, but for me it was amazing how much better I could function by taking a double dose and get in the shower as it started to work. By the time I was out, I felt able to face the day with enough energy to do my exercises and do them without moaning in pain. It didn't make me sleepy either since I had taken it for years.
I hope this answers your question. The Gabapentin and sleeping with oxygen are the two things that give me the most help with energy, besides eating on a regular schedule.
 
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lordkathy replied to 1975transplant's response:
not quit sure if i am doing this right. i have been diagnosed with fibro for 7 yrs almost 8. i had a dr who accidentally got me on neurontin! i only can tolerate 300 mg at bedtime. it makes me ssleepy & could never take it during the day. some people get sleepy on it, so be careful. i happened to have a neurogenic bladder & it helps decrease the urge during the night to get up & pee frequently. iwas happy about that i also take 10 mg of amitriptyline for sleep. that one helps me fall asleep, the neurontin keeps me asleep. the amitriptyline is a tricyclic anti depressant but they have found some tricyclics can be benefiicial to people w/ fibro to sleep!! i did not want to go higher due to it being very constipating. i have IBS & am more constipated than anything, so that is something i have to watch. i swim, stretch. move as much as i can. if i sit too long, i stiffen up. i have pain all over & it tends to move. from knees, hips to back, neck, shoulders, arms, hands, feet. thighs even. it is unrelenting. i have figured for me, no diet changes help. i just eat things in moderation. one cup of coffee, no artificial sweetners ( i gave up my beloved diet pepsi, but no changes resulted) & try to be careful about too much sugar. i have read vit d is important. i do take supplements too. good luck everyone with coping w/ fibro. i enjoyed everyone's posts & responses!
 
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Metis22 responded:
Hello

I know that I usually feel better when I eat a lot of vegetables and fruits, particularly fresh as opposed to cooked.

It is incredibly difficult for me to exercise; but if I can manage to walk my dog on a regular basis, I generally feel a bit better as well. But I do make sure to stretch first (most of the time!) and I listen to my body. If I feel pretty good, I will stay out longer. If I am struggling and in too much pain, I will cut it short.

I have been into researching the diet side of helping myself lately. Hopefully, I will find some helpful info and tips that work that I can pass along.

Peace.


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