Anyone Else's Fybromyalgia Really Bad Right Now?

A few others are sleep disorder, depression, ringing in the ears, brain fog (cognitive impairment), or anxiety.

The absolute worst one for me to deal with is the cognitive impairment. There are times when I can't string together a complete sentence and it's so frustrating.
 
DW Lauri (MeanLaureen) developed Fibro about 4 yrs back as a side effect to her AOSD. I know it makes her even more miserable at times.

She had an extremely rough 2 days (she was crying this morning about 2006 being 2 days old and already she hates it). Last night she was awake and crying almost every half hour. I'm not sure if its the Fibro acting up or the AOSD flaring. She's had a sore throat on and off over the past week so it's more than likely been her AOSD flaring

Mickey527 said:
I was just diagnosed and I have to say the pain is incredible. I had cancer last year and when I started having pain I immediately thought it might have been the cancer spreading to the bone. All my scans came back negative and after more testing they said it is fibromyalgia. There is not much to read about this on the internet and not much that can be done about it. I was given neurontin but it didn't work so I am trying some new meds next week after some surgery I need.
My Oncologist, General Practicioner and neurologist want me to go on disability because they said that the way I am now is the way I will always be. I am 51 and can hardly walk, especially in the morning. I look like I am 90, my mother walked better when she was 76 and she had COPD and CHF.
Is anyone else totally disabled from this? Peggie

Peggie, Lauri takes Neurontin along with about 8 other pain killers. It took some time for her to get any benefit from it - probably about 3 months. How long did you take it? She did have some nasty side effects for about 2 months though. She had horrible night traumas - not nightmares because she wasnt asleep - but night traumas where she went into a state of unconsciousness and saw terrible things. One time she was terrified and screaming because she said "Death was trying to push her into a big dark hole and she was going to die". Those were some hard nights. :sad1:

Anyway, back on the fibro subject. Lauri's doctor did try a (at the time) new drug cocktail on her that within a few weeks worked wonders. As you know, Fibro is often treated with antidepressants. A doctor (or team of doctors) out in California did some research mixing different types of psychiatric medicine together to help Fibro. The came upon a mix they called the "California Boost". Lauri's doctor tried it on her and it was the best thing ever in knocking her Fibro out. It's a combination of Effexor (antidepressant) and Remeron (another type of psychiatric drug), the Remeron is used in the dissolving pills form where you stick it on your tongue and let it slowly dissolve. If you guys are having a hard time getting relief you might want to ask your doctor about this mix - like I said, it worked wonders for Lauri. She went from cringing when she was touched to being able to sleep the entire night without waking up.

Good luck to everyone. I know what a bear this disease can be.
 
Glad to hear that Effexor and Remeron work for Lori. Effexor gave me horrible dreams and made me CRAZY. Remeron didn't do a dang thing. Odd how something can help one person so much but not touch another.

Give her a gentle hug from me please.

The pain is so bad right now that it is all I can do to move around. I don't want to do a dang thing. Yesterday I pushed myself a bit to get some things done and now I am afraid I shouldn't have. But I was afraid to sit around too much. You just can't win with this crap.

Gentle hugs to all of you.
 
Do you all want to hear something funny?

When my doctor first diagnosed my fibromyalgia, he basically told me there were no treatments except to boost your serotonin levels, like the rest of you are talking about with the drugs. So, what are some good ways to boost serotonin? Lots of exercise and lots of whoopie! :banana:

:rotfl2: My doctor actually prescribed sex! :banana:

I told him he was nuts. Easy for him to tell me to exercise when he wasn't in pain every day. And who's in the mood for sex? :blush: :confused3
 

Marseeya said:
:rotfl2: My doctor actually prescribed sex! :banana:

Well.... There could be worse therapies! :smooth:
(But, I agree about the pain factor - shhh, we won't tell DH). ;)
 
Marseeya said:
A few others are sleep disorder, depression, ringing in the ears, brain fog (cognitive impairment), or anxiety.

The absolute worst one for me to deal with is the cognitive impairment. There are times when I can't string together a complete sentence and it's so frustrating.


What tests do the doctors run to see if you have this Fibro?? The reason I ask is I have every single one of those symptoms and have had them for awhile now. The brain fog and the ringing of the ear is horrible. Of course with everything else I've been experiencing and being my age (51) I have been blaming everything on menopause. :rolleyes:
 
Kitty 34 said:
What tests do the doctors run to see if you have this Fibro?? The reason I ask is I have every single one of those symptoms and have had them for awhile now. The brain fog and the ringing of the ear is horrible. Of course with everything else I've been experiencing and being my age (51) I have been blaming everything on menopause. :rolleyes:

The only test I know about is one where they tap certain spots on your body to test sensitivity. But for the most part, a doctor will just look at a series of symptoms and make the diagnosis.
 
Kitty 34 said:
What tests do the doctors run to see if you have this Fibro?? The reason I ask is I have every single one of those symptoms and have had them for awhile now. The brain fog and the ringing of the ear is horrible. Of course with everything else I've been experiencing and being my age (51) I have been blaming everything on menopause. :rolleyes:

I think that it is mainly diagnosed by exclusion. They make sure that there are no other underlying conditions that could be causing the pain and other symptoms and if there aren't, they go with the Fibro dx. That is the bad part. Makes it darn hard to get disability approved without a fight because there is no black and white test showing that someone has this disease.
 
I*have had fibro for almost 8 years. The things that have really worked for me include
Ambien for sleep. I have been on 10 mg for 7 years and it still works for me. We also switched to a Temperpedic bed, and it is wonderfull. Wellbutrin for mood/serotonin issues. Trip to mu Chiropractor for when my muscles "pull" me out of alignment.About 4 years ago I went through a (painfull but so worth it) year long series of myofascial release work with a gifted massage therapist, that brought me huge gains in function and range of motion.I also try and get regular massages.
Daily I take ATP suplements that have vastly reduced my achiness/pain, and take a long HOT bath every night without fail.Lastly I just keep going! I refuse to make fibro be the defining part of "who I am".
 
But, I am having a much harder time for the last few weeks. Sounds like I am in good company!
 
Judy from Boise said:
... Daily I take ATP suplements that have vastly reduced my achiness/pain, and take a long HOT bath every night without fail.Lastly I just keep going! I refuse to make fibro be the defining part of "who I am".

You go girl! :cheer2:

BTW, what's ATP??
 
it is adenosine tri-phosphate....it is what is produced during the acetyl-co-a cycle (Krebs cycle) in the cells to produce energy. Many experts believe that ultimately Fibro is a disorder of the krebs cycle that leads to chronic muscle anoxia...that leads to cell death....that leads to pain and deficits.
I am trying this off the top of my head at 11 pm....so any errors are my own!
 
Do insurance companies accept the fibro as an ailment since it's so hard to diagnose?

It sounds like it's the combination of symptoms that helps narrow it down. I seem to have a touch of arthritis at times (I think!) and it sounds like the type of pain caused by fibro except that the fibro sounds a lot worse.
 
Judy from Boise said:
it is adenosine tri-phosphate....it is what is produced during the acetyl-co-a cycle (Krebs cycle) in the cells to produce energy. Many experts believe that ultimately Fibro is a disorder of the krebs cycle that leads to chronic muscle anoxia...that leads to cell death....that leads to pain and deficits.
I am trying this off the top of my head at 11 pm....so any errors are my own!

Thanks!
 
I have had fibro for 21 years now. I take a low dose of amptytripoline(sp?) at night. It also helps IBS. It stimulates the nerve endings (so doctor says). It helps a little bit, but mostly I have learned to live with the pain, I am used to it. I don't let it stop me from doing anything, and it hasn't yet. :teeth:
 
Planogirl said:
Do insurance companies accept the fibro as an ailment since it's so hard to diagnose?

It sounds like it's the combination of symptoms that helps narrow it down. I seem to have a touch of arthritis at times (I think!) and it sounds like the type of pain caused by fibro except that the fibro sounds a lot worse.

No clue. My doc always puts it on my claim form even when I'm seeing him about the flu! So, I assume so.
 
I have been diagnosed with fibromyalgia for 13 years, although I believe I have had it longer than that - it just wasn’t diagnosed until I was 27 years old. Over the years, my pain and fatigue levels have become steadily worse and I have tried numerous therapies. About five years ago, we bought our house and I went to a new rheumatologist closer to our new home. He said that fibromyalgia was a diagnosis of exclusion, and proceeded to test me for everything else it might be. All of those tests were negative and I had tenderness in all of the trigger points he tested, so the diagnosis was confirmed. He put me on several medications, none of which helped at all. I went back to him in tears, begging for relief, and all he could offer was retesting which I declined.

I tried some alternative therapies after that, some of which did provide a measure of relief, but they were ultimately too expensive for me to continue. I took a lot of over-the-counter pain relievers for a number of years, and about a year ago I began to feel so bad I could barely move. I chose to see a different, relatively young rheumatologist who specializes in fibromyalgia. He gave me Soma for muscle pain and a small dose of amitriptyline for sleep, both of which have helped me tremendously. He also diagnosed several other health problems that I did not know I had and sent me to other physicians for treatment of them. They were all contributing to my pain and fatigue, but I didn’t know it until he found the problems. So I am now on medication for diabetes, use a CPAP machine for sleep apnea, and take iron supplements for anemia and my overall health and wellbeing has improved greatly. I also recently bought a Select Comfort Sleep Number bed, and it has helped me sleep more comfortably and much more soundly than I have for many years.

Having said that, I have also been much more achy than normal over the last few weeks, partly from the change in the weather and partly from stress and grief brought on by traveling from Georgia to North Carolina multiple times over the last three months to help care for my terminally ill mother-in-law (who passed away last month). I am trying to get more rest, take my medications regularly and move as much as I can until this flare calms down.

Marseeya, I have to comment on the advice your doctor gave you about sex helping the pain level. It became apparent several years ago that if my DH and I waited until I was not in pain to be physically intimate, we would be waiting a REALLY long time. I was not happy with that idea, so through trial and error we discovered the following: If I take my pain medication and take a hot shower while it is kicking in, my muscles are not as painful as they might otherwise be. With a tender, gentle approach from my DH, I am not in severe pain and, in fact, am almost pain free for several hours. There are some weeks that this is the only time I am pain free. So, there is something to be said for the power of endorphins, at least in my experience - YMMV.

Judy, I am interested in the ATP you mentioned - do you buy it in the health food store or online? Also, what dosage have you found effective? Any information you would be willing to provide would be much appreciated.

I hope all of us are soon feeling less pain and more energy - looking forward to Disney trips sure helps me!

Susan
 
As far as I know i am in a very select group as far as the ATP goes. My DH is CFO at a nutritional supplement company, and they are bringing the product to market
. I have been able to be a "tester" for the last 6 months, and had phenomenal results. I am the sub type of Fibro that has very few GI problems, and lots of muscle problems.
 


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