Fibromyalgia Community (Live Journal)

Welcome. This community has been created for people that are suffering and surviving fibromyalgia. All are welcome. That means patients, spouse/significant others, medical professionals, and people wanting to learn more. This is for sharing our daily struggles and pain and good days.

Live Journal Fibromyalgia Community

Nausea
Does anyone seem to often be nauseous, especially accompanied by a flare-up? I have been nauseous very often lately, especially when my pain is at its worst and I have flu-like symptoms (but no flu). It never gets to the point that I throw up or want to... but it drives me CRAZY. Nothing seems to help (anti-nausea meds, soda, ginger, etc.).

Help!

online chat rooms for support
Hey everyone,

I was wondering if any of you use online chat rooms to talk with others who have fibromyalgia, et al.

A few weeks ago, I stumbled across prohealth.com which has a free (but you have to register with them) chat room geared for those of us with FMS. Do any of you know of any others?

Thanks and I hope you all are having a good night :)

Fibro and narcolepsy
There have been a few posts lately about sleep studies, so adding to the trend...

I had mine done a week and a half ago and just got the results yesterday. The doctor wants to do a daytime sleep study to test for narcolepsy, which he feels is the most likely reason for the results of the nighttime study (no breathing issues and minimal leg spasms, but my brain "woke up" on average every 2 minutes for no reason that they could pin point).

I know that apnea is common for folks with fibro but is narcolepsy also prevalent? Has anyone here been diagnosed with narcolepsy, have any tips/advice/stories/success with meds/etc?

SIGH. I went just a little over a month with little to no pain. I got away with nothing more than some headaches and an achy lower back (which is a problem I've suffered with for a lot longer that I've had fibro problems).

My body picked the worst time to flare up. It's mostly my shoulders, neck, and arms right now. My legs aren't doing great either. I hurt so much last night that I didn't fall asleep until after 4 AM. I kept getting muscle jolts that would jerk me awake when I was almost asleep, too. It's almost 9 AM now, and my aunt and her two kids are in town. They'll be over in about an hour to pick me up so we can spend some family time together.

And I think that's where fibro becomes the absolute worst. I keep trying to think of ways to tactfully explain to the kids why I won't be able to play with them, and that they need to be careful when they touch me. I'm almost worried that I won't even manage to give them hugs. And on top of that, I'm exhausted and just want to crawl back into bed.

I just had to vent. Not sure my flist always understands what I'm going through, so it's nice to have a community like this. *gentle hugs for everyone*

Update...
Follow up to this post:http://community.livejournal.com/fibromyalgia/2117518.html

I saw the endocrinologist today. The bone density was good however he said that he sees people who have low Vitamin D but has not come across anyone as low as mine. The lowest he has seen was 45 and I am at 18. So this is his recommendation: 1000 units of Vitamin D for another 5 months, retest and increase by another 1000, retest again 6 months after that. It takes at least 6 months to identify any changes with additional Vitamin D. So it will be a long process. The results from the testing takes at least 8 weeks as the testing is only done in Toronto. He states that everyone should be taking at least 1000 units of Vitamin D especially for young adults as it will help prevent MS. As North Americans we do not get enough Vitamin D through the sunlight at any time of the year.

He further explained that the mobility issues and pain are due to the low Vitamin D which affects the muscles. The over dose quantity for Vitamin D is 30000 units.

my bra woes
My chest and shoulder area is my most sensitive spot and where the majority of my pain is. I realized a few months ago that it helps to stop wearing underwire bras. I like the bit of relief, but I hate ugly or boring sports bras. Anyone else have this issue? Maybe tmi but it gives me a boost to wear a pretty bra (I feel gorgeous in my jeans and a cute bra only) and now I can't really have that much anymore! Plus it's not exactly sexy when I've got my boyfriend over and I've got this large meshy fortress where my boobs should be. :P I'd love to find some cute non-underwire bras, but I don't know where to find any. :\

Related to the sleep apnea thing...
The sleep study skimbells just had to go through reminded me of this problem I myself have been having. When I'm distracted -- such as when I'm typing, or driving, or reading, or doing anything like that -- I just... stop breathing. Mid-breath, half-full lungs, what have you, I just... stop, and I don't realize I've done it until my body makes me gasp for air. My doctor has no bloody clue what's going on, naturally, so does anyone here have any ideas?

X-posted
It has been obout 6 months since my last post, I don't know where to start.

Still battling with the short/long term disability insurance company, that I have paid into for 9 years, to get money deemed due me by my doctor, therapist and rheumatologist! It is now in the hands of the state department of commerce. They are looking into why these dorks figure that I don't deserve what I paid for, just because I have lived with fibro (a progressive syndrom) for years. I guess they can't figure that people get worse over time.

I am still waiting on the appeal to my Social Security Disability claim as well. I think it may help that I have disability plates for my car, but who knows for certain.

My physical issues have only worsened, and now that the cold is setting in, movement is even harder. If we had the income of disability, I would be able to get a Y membership, where I could do some water therapy, but can't do it on just malgoroth's income. We are able to just barely make our necessities, and sometimes can't even do that...

Even with this, I am not really in a bad place. I am, at times, but am trying to work those out.

Am working with my therapist on my PTSD; identifying the things that caused the trauma, and working to make a conscious move on how they impact my life now.

Hard times are ahead with this, I know. I am already getting more nightmares and flashbacks, out of the blue at times. Feels really dumb to have to go hobbling (would be running if I could!) out of a store because you smelled something that triggered a flashback!

Ah, good times ahead.

Remembering Gratitude
Just wanted to share an experience I had today.

The past few weeks I've been very busy and stressed and my fibromyalgia has responded in kind with more pain and fatigue. In general because I am fortunate enough to remain busy and active, when I think about my fibro, all I have is anger at the ways it continues to hold me back. But today I received a small little reminder of how things have been in the past, and how lucky I am today.

Just six months ago I was having a really hard time. I was missing half of my classes because I was too sick to get out of bed. I was emotionally overwrought, which only increased the stress on my body. I would break down crying and sobbing 3-4 times a week because I was so stressed. The medications I was taking were barely helpful and seemed to create only more problems I had to deal with. I had constant nausea and I had fatigue that ruled my life.

These days, I take no daily medicatons. I still deal with fatigue but it is less debilitating, Gone is my daily pain. I am able to take on more responsibilities and complete them with greater ease and I've broken down once this semester the way I would every week just last spring. It was so easy to forget how well I am doing and be grateful and feel angry and resentful instead. But today, rather than being angry, I'm proud and grateful. I feel blessed that I've been able to alter my health so drastically in so short of time.

If anyone is curious here are some of the changes I've made that have had a direct influence on my health: Mind-Body therapy, Mindfulness Meditation Stress Reduction Program, a more integrated yoga practice, and a low-sugar diet. I know that many of you may disagree, but I believe that my fibromyalgia was strongly connected to the way emotions live in my body and in learning how to live with and accept my emotions I made myself more healthy. Less than a year ago my therapist told me I could live without or greatly limit the impact fibromyalgia had on my life and I didn't believe her. But I'm a convert. I'm a healthier, more whole person for the work I've done and so not only must I be grateful that I am better, but I am in a twisted way grateful to the fibromyalgia for leading me down that path.

Good luck to all of you.

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