Fibromyalgia & Fatigue

[thester6474]

Hi, I am a 25 year old female that was diagnosed with Fibromyalgia in August along with many other things...I have been staying so tired, some days sleeping more than 15 hours....Just getting out of bed sometimes is almost impossible...For you all what has been the most helpful treatment (exercise, therapy or medication) for your fatigue?  All of my medicines cause fatigue and so do all 8 to 10 diagnoses I currently have...Thanks so much for your help.

[MoesQueen]

Hello,

My most painful treatment was trigger point injections, I rec'vd 16 shots in the first and only setting.
Physical Therapy, was painful due to having to move around.

MoesQueen

[sfbaygirl]

I too have a lot of fatigue. Small amt's of exercise, like walking for 5 minutes and working it up will help your fatigue.  I have had that 15 hr. sleep a day, not now. What are you taking?

[LLWB]

Lyrica seems to be helping me with the nerve pain of fibro. I haven't been able to exercise at all since Nov due to a flare. But when I can exercise does help the pain. Nothing I have done seems to help the fatigue. I went to church this morning, then took a "nap" for 4 1/2 hrs. You just have to learn to pace yourself. My dr told me to vacuum one room at a time, not the whole house. One load of laundry, not spend all day washing & folding clothes. You get the idea.It's a crappy disease, but it can be mannaged. Best Wishes

[sfbaygirl]

I was sure hoping you had the miracle to help fatigue. I too take those 4 or more hour naps when I do something as small as making a meal or going somewhere. Yuck.  At least we are not in the pain, I guess. The Lyrica helps a lot.  I want normal, but it seems allusive.....

[sfbaygirl]

I did get on my stationary bike tonight.  About 2 minutes, but if I work it up it sure can't hurt!  I am not in my flare now and want to get out of this awful fatigue.  Just walking to that bike takes some talking myself into,  but needed I think.

[thester6474]

Hi, I tried the Lyrica, but you are talking to a person that would not take Aspirin for a headache before...Before I got sick an aspirin would make me sleepy...I would wake up the morning after taking the Lyrica and feel overly intoxicated...I could not walk without holding on to things, I felt really uneasy..So my Rheumy took me off of it and prescribed Lamictal...I do not have such a hard time with it...Yea, I have to do things in intervals too, I do not think others that are well really understand...I think they really think we are putting on, and the disease is all in our minds...I cannot wait until they can put some clinical evidence behind this diagnosis, so we won't look mental, lol.  The fatigue is bad, I have learned to keep the fan on at night (along with my air that is always set on about 65)...I get hot really quickly, so I get somewhat a better nights rest, notice I said somewhat...The fatigue is still kicking my butt though...Hope they figure out something soon, because I AM PULLING OUT MY HAIR, not literally...But not far from it, lol.

[sfbaygirl]

Wow, you sound like me. I am on Lyrica and don't feel over intoxicated but man, I can't do much of anything!!!   I used to be such a mover and shaker, now I feel confined to bed. I hate this!   Perhaps the pain is gone, but can I function?  NO.  Yuck.  I don't know what to do. Maybe I just go through the flare ups with nothing and exist in the world when I am not in a flare.  How am I to start Grad school in two weeks when I feel like a zombie much of the time...

[thester6474]

Yes, I had to way the options to, either way you are just existing...I just decided to put my faith in my Rheumy, because he is really intelligent..And I know he has my best interest at heart...There is nothing worse than a doctor that will not work with you and your problems with meds...Look up...Things are bound to get better, it is 2008 now.

[sfbaygirl]

It's not 2008 here yet, where are you??  I think you are right about trusting the Rhemy. I like mine.  I think I need to see him sooner than I was going to.  Happy New Years!!!  Thanks!

[thester6474]

I am on the east coast...Yea I cannot get back to see mine until April 28th...We live in a rural area, and Rheumys are hard to find

[LLWB]

Not quite New Year here yet..West Coast. I live in a VERY small town, and the closest rheumie that works with fibro pts. is 300 miles away. My PCP is a naturopathic physician, but he is also very knowledgable about fibro. The fatigue is what gets to me the most too. And I know how hard it is to look "normal" and be in so much pain etc. and have people look at you like "duh" it's all in your head. IT"S NOT ! I even changed dr's because of that attitude. girl..pleaase try Grad School. is there any way you can do some of it on-line? My daughter in Florida does that, just because she's so busy building a new house 10,000sq ft organic garden, cows, and husband. I drive 8 hrs a day for my job, and every bump in the road hurts.but, gotta eat.  By the weekend, all I do is work and sit, and then sometimes the weekend is a dead loss, just to gear up for the next wek. But we have to have hope that something will be found to help us. Wishing you both a pain-free New Year. Prayers and hugs.

[thester6474]

Hi all, I do not know how you brought in the New Years,but I definetly overdid it....I feel like I I have the Flu today....No energy, weak, headache, burning & chest pains...All I did was spend the day with my niece, doing things I just did not have the energy or willpower to do...lol i really did not have it yesterday either.....But I tried and now I feel like C***.

[thester6474]

lol, my bad, i meant to send the above message to sdbaygirl not myslef....fibrofog

[sfbaygirl]

LOL  I Dont think I have ever posted to myself before, but I did try and break into someone elses car that looked like mine. The passenger door was open, so I threw my stuff in. then the button lock wouldn't work. the woman who owned the car came out and said, hey, your car is NEXT to mine.  Good one, Linda!

I can't do it online.  Geez, I have done one class that was online a lot, but to have to go on everyday...I hated it!  Don't think I can do this master's online anyway.  School is only 20 minutes and 2 classes every two weeks. Sounds managable.  Good thing I have spell check for papers.  LLWB, you live in Oregon, huh?  I can't imagine driving 8 hours to work!! My son lives in Portland.  Just finished UC Berkeley and had a great job lined up and took my sweet grandkids and moved.  Pretty sad about that.  Living near SF in CA is a lot easier than a small town, although there are some georgeous places up north.  

Happy New Year!

[thester6474]

Hi, I am sorry, not really in the mood to post today...I am about to go take me a nap, hoping I will feel better when I wake up..Didn't get but about 4 or 5 hours of sleep last night.

[sfbaygirl]

Hey no problem!! Hope you feel better soon!  Does the new drug help as much as the Lyrica, w/o the fatigue?  You can answer later, of course.  Wishing you some good sleep, restful sleep.

[thester6474]

I can handle the drug and its side effects a lot better than the lyrica...I was existing, and that was all, when I was on the lyrica...The fatigue like I said is a MAJOR problem...Every drug has side effects, don't I know it...But some are more tolerable than others...I would much rather take the lamictal and itch, than be bedridden though.

[sfbaygirl]

Thanks, I think I will ask my Rhemy about it! Get some restoritive sleep girl. Sounds like you need it!

[thester6474]

It's 9:50 now over here, I finally got a little rest, that is until my cat came in my room and was wanting to lick me and purr....And yes, that is not a typo, I mean my cat...I do not feel as weak as I did beforehand though...Sometimes rest can be the best medicine out here.

[sfbaygirl]

Geez, I hate when my cat does that in the middle of the night. She drives me batty! How do they purr so loud!  We had a fire this year and the cats moved outside. I have a low window I leave open during the day and shut at night as the raccoons like to come in to eat. Many times the cats (5) don't go out and stay in the house at night. When Frieda says in she bugs me at night until I let her out at 4 am.  I just woke up myself after a good nap.  Sleep sure gets screwy with this stuff. It seems I do sleep better now that I have the Lyrica, just want this fatigue to go away, so I can do something, besides lay around. I need to ask my dr. about that drug.

[thester6474]

It is called Lamictal, it is mainly used for Epilepsy and Bi-Polar Disorder.  But its off-label uses include the treatment of peripheral neuropathy, trigeminal neuralgia, cluster headaches, migraines, and reducing neuropathic pain.

[sfbaygirl]

Interesting. I get Cluster headaches and migraines.  How long did you take the Lyrica?

[thester6474]

Yes, I too have migraines and cluster headaches...I took lyrica from August 20th -- September 30th...I was supposed to take 150 mg a day for one week, and increase it to 300 mg after that first week...But after a week of feeling like a zombie, I called my Rheumy...He told me that he understood how I felt and my concerns, so he told me to continue to take the Lyrica until our next appointment...He also said to continue to take just the 150 mg, until I felt comfortable increasing the dosage...Well needless to say, I never did.

[sfbaygirl]

My fog I don't remember, but I think it has been about a month or more. I started on 50mg for a week, then 100mg for the next, now up to 150mg.  He never said to take more. The first week or two didn't help the pain much. It sure is now.  I just want to get up and do stuff.  I was on Neurontin and started with the whole dose in one week, felt like I was jumping outta my skin.  Stopped right away.  This time I did it slowly, don't feel like a zombie, but I sure feel like doing nothing.  

Has the drug helped the migraines and clusters?  I had the worst migraines ever before menopause.  Sometimes at least a week every month I was in bed.  My boss thought I should go on disability. Thankfully the common migraines have subsided, but left with clusters.