Yesterday (Saturday), the alarm went off at six in the morning, since we had a friend sleep over who needed to get to work that was an hour away, and my husband, Adam, had said he would drive her. I had decided to go with them, but when I woke up, I found myself in a fibro flare, on top of a flare of hypertonia from my cerebral palsy. I think Adam could sense that, because after he had dressed and gotten ready, he looked at me trying to sit and up and said, "You know, you can stay and sleep. You don't have to come. Sleep and rest and get better!"
I kept saying, "Are you sure? I feel lousy for backing out." He told me, "Don't worry about it. Beth understands. I understand. You hurt and you feel like shit. I want you to keep getting better. You rest. I'll be home soon and I'll help you feel better."
Later that night, he gave me a gentle Shiatsu massage with Reiki, and chopped up fresh pineapple for a snack to help my sore muscles (pineapple contains bromelain). My emotional state absolutely skyrocketed.
I just wish more fibromyalgia patients had such loving support from their partners.

I'm really going through it on a lot of levels right now. I realize that some of my problems are due to emotional disorders and that I've alienated some people I really wanted to be my friends because of my reactions to a couple of things. I apologize for that; I'm pretty sure it's true because the people who answer my posts have changed; I appreciate those who've stayed with me, but miss those who have left. I don't want to upset anyone; the fibro mixed with the PTSD and other psychiatric disorders make it difficult sometimes.

I am really in so much pain and also sick, not getting much support from those around me, and not being able to pull my weight like I usually do. Would like support if anyone feels up to it (I won't bite your head off)

Thanks in advance, and I apologize for any problems I have caused on this board.

I know that someone else brought it up before but I am definitely dealing with it today- auditory sensitivity. There are 5 of us here for Christmas, my parents, my sister, my hubby and me, but with only 5 of us it still seems like too much noise. Daddy decided to start playing his mp3 player on its new dock, while the TV was still on low, while my hubby kept trying to read to me cards that are in his new game, while my mother is thinking aloud. Meanwhile, no one is hearing me as I try to talk. My head killing me!! My ears cannot focus on any one thing at a time, my head is awash with noise... not sound or music or speaking... noise.

I have always had some audio issues because I am hearing impaired and possibly have C.A.P.S. (central auditory processing syndrome- basically dyslexia of the hearing. My ears hear it but my brain has trouble processing it properly). My auditory issue seem far FAR worse since the fibro. It seems I can handle far less. It is so bad today that I am constantly on the edge of tears.

I went to my family dr this morning and I'm going to be on lexapro (10mg) . He said 1x at night and if a wk or 2 i don't feel better than go to 2x and if we need to up it than we'll talk about that. But I still have my xanex in case (.5mg).  So that's good - esp till i get on this medication.

Is anyone on that? I know my bff is. But she forgets to take it a lot. I can't afford that do to my stuttering issues!

He also mentioned Savella... to maybe ask my neuro about.  Is anyone on that?

Thanks!

http://shine.yahoo.com/channel/health/4-reasons-you-are-quot-fake-hungry-quot-555792/

Great article, and exactly the question I asked my Mom tonight, but she didn't have the answer. I just ran across it, so I'm saving it here and will send it to her as well.

One section made me think of this group because a lot of us have problems sleeping:

Hunger Due to Sleepiness: Experts at www.WebMD.com state that two major hormones, leptin and ghrelin, affect and control sensations of hunger and fullness. Ghrelin stimulates appetite, while leptin, made in fat cells, alerts the brain that you have had enough to eat. Lack of sleep causes a significant drop in leptin levels as well as an increase in ghrelin levels, a so called double whammy for appetite control and feelings of satiety. Daytime fatigue may lead people to overeat (often, high sugar, nutrient poor foods) in an attempt to get an extra surge of energy. This is equivalent to placing a Band-Aid on the true problem. It provides only temporary relief, which is soon followed by a crash in energy levels and a resurgence of “hunger” leading to more snacking, increased sugar cravings, etc….a vicious cycle. If you are feeling mid-afternoon hunger pains, try: a brisk 10 min walk around the block (fresh air helps, as does exercise, to boost alertness and increase circulation), a cup of green tea (high in antioxidants and low in caffeine relative to coffee), a 1/4 cup of almonds and a small apple (high in protein, healthy fat and carbohydrates, low in sugar, and a good source of magnesium and fiber). Even taking a few deep breaths can help curb fatigue!

I have been taking Lyrica (1 pill at night) since Wednesday.  And although it makes me very sleepy - the pain is still bad.   Wednesday I can start taking 2 .. i don't remember if its 1 in morning & 1 at night or 2 in morning and 1 at night ha. I told my husband he has to explain it better than what it says on the pill label.  I really hope that helps.

I'm not sure if i asked this. Bc my brain well we all know how this is - i don't remember! haha.

What do you wear on your feet? What is your comfort.  I'm a little different bc I have peripheral neuropathy and my feet are normally hot. But i was just wondering ... i wear medical crocs (w/o any socks) & New balance sneakers. (yes there is snow on the ground & i still have socks - haha)

My left knee has been bothering me so. Yesterday it felt broke. I'm very uneasy walking lately too.. and that could just be because they switched my medicine so I'm back to being in pain everyday & the cold weather doesn't help my joints!!

I go to my family dr tomorrow morning about anxiety pills.  Wednesday I go to my Rheumy - about my vitamin d, a follow up. And also for her to sign the paper to send in for a handi cap sign to hook in my car. Oh and for PT. & my nails have been looking offly white and peely.. i think that's like psoriasis or something.  I better write that down bc I wont remember.

I work today, tomorrow, and xmas eve. 3 days of work is awesome. I get paid 2x on xmas eve that's why i volunteered. But im sure that wont be fun bc everyone is going to get new computers and since i work as a tech for internet .. well im sure you can imagine. ;)

take care everyone.

Posted to my  journal today at http://sa-hall.livejournal.com/31582.html

I don't understand why there are so many doctors who do not believe in FM, and why so many people are so lacking in understanding when FM flares happen. It would be completely socially unacceptable for someone to treat, say, a cancer patient this way, or an amputee, or a diabetic. That's all taken seriously. FM isn't, and least not by most people (including many of those who should know better). Why is this, and what can be done about it?

I was wondering about people experiences in Massachusetts?Has anyone tried the Hunt center in Danvers?

http://www.beverlyhospital.org/services/centers/sleep-disorder-center

Need to vent and also wondering about abruptly stopping Cymbalta even for a couple of days like I did. I had the weird nerve pain again in my feet and legs. It's a little better today (I'm back on the Cymbalta) but wondering about withdrawal symptoms and whether the nerve stuff could be attributed to that. I don't really know all that much about Cymbalta, but I started taking it around the same time I started taking muscle relaxers, and together, they knocked out this really long flare I was in.
Right now, there is still foot and leg pain, but not the crushing pain that I attribute to nerves; I had to get up early to go to a morning Christmas party and now I have to go to work because I am almost broke and my partner isn't doing too well money-wise either. I really don't want to go, but I pretty much have to, and have to hope I actually make money. I've been sleeping way too much this entire week, and this whole work thing just seems like too much. I don't like winter. Don't want to do anything, and none of the medications I am taking can stop the pain or even stop the flare in my knee. Nothing. I have to go. The whole thing seems ridiculous. I will have to carry heavy stuff on the BART train and then work hard and I might not even make any money. Something has to give here. I need a job with a steady paycheck that I can actually work without worsening flares, but according to the people at the program I'm in, I need to learn more computer skills and get help with resume writing and cover letters and then go to an agency that can help me find a job. I hope they will keep in mind that I have a Master's Degree in Psychology. Well, here we go. Wish me luck. Thanks for listening, I just had to vent.
Kathleen

I just want to extol the virtues of my new shoes because it might help others with the same issues I have... and neither pair was expensive! I have trouble wearing sneakers because the laces bother my very sensitive feet. Also, I live in upstate NY where it is 4* out today. Having Raynaud's I need to keep my feet as warm as possible so that I can walk. I went on a hunt for warm shoes without laces. I stuck gold!!

Early last week Old Navy was having a 1 week sale on their faux-fur lined boots. I got a pair for $15, they have a pattern I dont love but there wasnt a huge selection by the time I went there. Normally they are still pretty cheap at $35. You can even get the same kind of faux-fur lines boots at WalMart or KMart.

When I was at the mall with my friend the other day there was a Crocs kiosk. I got a pair of shearling (sp? ya know, that really soft wooly-type stuff) lined Crocs for only $30. Plus the wooly liner is removable so I can still wear them in the spring & summer.

I had never thought about buying a pair of Uggs because they are SO expensive (run about $150). I am so glad that other companies got on the bandwagon and put out cheap alternative for those of us in the north who need warm feet. Plus the added fun that for once I look trendy!

I was given Cymbalta at the pain clinic today and I was wondering how well it has helped those of you who take it. I've heard bad things about it and don't want to take it if it doesn't help.

Also, I was told by the NP I saw at the clinic that narcotics didn't help Fibro. *snort* I beg to differ!!

Hey everybody,

Somebody posted recently in a thread on a prior post about having trouble finding a good pain management doctor. I know I'm not the only one who's had a frustrating time finding doctors who keep up to date on fibromyalgia research and/or who are competent in pain management. I put together this list of links that I've used to find good doctors. I've had pretty good luck with doctors in the various places I've lived and here is how I've found some of them. I hope this helps someone out there.

( Cut for loads of links and tips for finding doctors )

I HOPE THIS LIST HELPS! If you've found good doctors, will you please leave your comments about how you've found them and what advice you'd give to other patients who are having trouble finding a good doctor? If you leave other similar links that seem useful I may edit this post to add them.

I am having trouble. I got a referral from my primary doctor to go to a pain clinic, but my insurance doesn't have anyone within 30 miles of me, so they said they'd approve someone outside the network. But I've called probably 7 or 8 different places (some of them more than once when I got transferred around) and the places I've found either a. don't accept outpatients (inpatient only - hospitals) or b. refuse to even consider taking the approval from my insurance.

I don't know what to do, and with the weather changing, I'm in a lot more pain than usual. Does anyone have any ideas?

(Crossposted several places)

Well, the last few days have been fun.

Sunday was a 'mope' day - didn't feel like doing anything, but managed to put outside decorations up for the holidays.

Monday was spent in bed, partially for a migraine that wouldn't quit, though it wasn't 'bad' (not totally crippling), and partially because I wanted off the planet. (didn't want to deal)

I've been up since 5 am, after going to bed at 10 pm, after being up since midnight.

Both my hips hurt, same location (on the 'point', where the joint is, I guess), my neck hurts, my right arm hurts...and my head is trying to get back into it.

I'm seeing my neurologist today, and I don't know that this won't be just a 'oh, this is still going on, see your orthopedist' - he's not very proactive in helping me. I see a spine specialist tomorrow, I don't know what he's going to do. Thinking of asking for a referral to a rheumatologist.


My meds got screwed up - ran out of gabapentin, so I ended up quitting that for a few days, and finally got the script picked up (we were out of money). Last night, instead of taking all 900 mg, I just took 300, to remind my body that this stuff belongs there. I'll take 600 tonight.

I'm not having fun with this amount of pain. I can't get motivated to do anything either, because I know it will hurt, no matter what. *whine* Hate!

thanks for listening to me whine

So this past week I thought it was do to fibro the symptoms I was having but it wasn't. I randomly started stuttering and such and here it was do to anxiety & stress. So that is how my body reacted from an over load i suppose.

I have to see a psychologist now... bc as soon as my anxiety gets too much i start stammering/stuttering and I was out for work for a week. ugh. It should help because I was told to see someone like behavioral therapy (because of my sleep). Who sees a psychologist? I'm taking xanex right now because I know it works but when my family dr prescribed it - i was only taking when needed - as of now I see myself taking this everyday haha- what are you on for your anxiety?

Also my neuro is taking me off Gabapentin and switching me to Lyrica. Is anyone on Lyrica and likes it?

Thanks a bunch.

I have always loved driving long distance. I use to want to be a truck driver. My best friend Beth is severely physically disabled (wheelchair bound, mostly). When Beth has an event out of state, like her step-sister's Miami wedding, she hires me to drive her. Yesterday I drove from where I live in upstate NY to visit her in Long Island about 4 hours away. I am in agony today! My legs hurt, my hands hurt from holding the steering wheel, my back hurts. I use to love driving but it is yet another thing that is now being taking away because of the fibromyalgia! I am heart broken. No more long road trips for me.

Hey again! I just had a couple new questions for you old-time sufferers ;)

I have severe Fibro pain in my butt. The pain is caused by this small muscle that runs deep under the gluteuos maximus called the piriformis muscle. Although both sides are pretty painful, I've noticed that the right side seems to be especially tender. When you have Fibro, do both sides have to hurt equally? Is anyone else lop-sided when it comes to pain?

To ease the pain in my butt, I do *tons* of stretches and my boyfriend will rub the sore areas with his hands or with a back massager. Should I be rubbing and stretching my sore muscles? It seems that it feels better for a little while, but the pain always comes back. Would it be better not to irritate those muscles if after rubbing and stretching they still hurt anyway?

Also, one last question. For years I have been a frequent peer. It seems like every half hour I have to go to the bathroom to pee. I read somewhere that they have a new study about this, and that people with Fibro do urinate more frequently than normal people. Do any of you have this problem?

Lastly, I wanted to apologize for not replying on all the wonderful comments on my other posts. I've just been so tired and sore, I haven't gotten to them yet :( Forgive me!

I've never been apart of a sleep study.What happens if you can't sleep?or fall asleep at 4am?

Hi all. I was without computer for a few days. If anyone posted herabal tea stories for me just reply so I know to go back and look for them. That is all. gentle hugs, warm fuzzy robes, and healing light for all. (Sorry I just got over a flare from hell so I'm bit too peppy for my own good. lol)