Fibromyalgia Moms? - Page 8

[zonapellucida]

Originally Posted by supakitty

I'm going to my rheumatologist today to talk specifically about this diagnosis. I have been taking tramadol with some relief of the pain. Morning seems to be the worst time. Also, a little OT but I lost my baby yesterday, I was 15 weeks. It was very sad.

:

-Laura

I had a 14 wk loss. Check out the pg loss board. There are some great women over there.

[Jeanne D'Arc]

Originally Posted by thomrho

I STRONGLY urge anyone having Fibromyalgia to have a sleep study. Some studies have shown a rate of 80% of people with Fibromyalgia having sleep apnea. Of course no one knows for sure what causes Fibromyalgia. Personally, I was diagnosed with it a year ago. Since then I have had two sleep studies and I am now being treated for moderate to severe sleep apnea. Sleep Apnea can typically be treated with CPAP (continuos positive air pressure). It is a mask and hose that blows air to keep your airway open. I was feeling so bad and now I've been improving dramatically. Two months ago I had to take three weeks off of treatment for sleep apnea because of sinus surgery. My Fibromyalgia Flared badly. Anyway, I hope that this information can help some of you. I actually have been having 80% or more good days when it used to be about 10%. Good luck!

80%? I dunno. I don't snore at all, and I'm very thin. So i doubt I could
have obstructive apnea. I am however soooo glad you are getting
good sleep now, I can't imagine if i didnt get good sleep. I actually
sleep okay most of the time, but that is not without plenty of
supplementation.

Of course no one knows for sure what causes Fibromyalgia.

It is most commonly a pathogenic disease, whether it be a combination
of Mycoplasma, Mold/candida or Lyme, and goes hand in hand with
chemical sensitivities ... most people with fibro and cfs test positive for
one or more of those pathogens ( parasites too ).
So there is def a cause to our misery.

I have tested positive for Mycoplasma, Mold, and Candida, I
believe there were even some parasites found. I will be
getting my Lyme test soon, and firmly believe it to be the
cause of much of my muscle pain and neurological symptoms.

[CorasMama]

OMG!OMG!OMG! I just slept, all night long, all in one chunk! And I just had to share this momentous occasion with someone(s) who would understand. Sure, it took Rozerem, Clonazepam, and a muscle relaxer to do it, but it happened! :

Also, I had an amazing doctor visit last week. First, it was amazing because I could actually go see her, as I haven't had insurance in over a year, and now I have great insurance, having gotten married last month. But, she also listened to me, and we discussed a bunch of stuff:

1: I needed to temporarily (see #2) up the dosage on my fentanyl patch to 100mcg/hr, as I'd got a tolerance built up to the 75s. She did that.

2: in January, I want to work on getting off the Fentanyl patch and the other meds I'm on, and try some alternative therapies, because I want to TTC in about a year. She's going to help me wean slowly and detox (not going to be a pleasant process, as I've been on the patch for 5 years!)

3: I'm not entirely convinced that it's Fibromyalgia. I believe that, within all the diagnoses of fms, it's really some actual fms, and several diseases that they just haven't discovered yet. Why else would there be such diversity in what treatments work? But for me, it's like, none of the treatments I've tried (cognitive, Neurontin - works ok for my RLS, not for my pain, guiafenisin, etc) have worked. Plus, there are a few fms symptoms I don't have (I have an aversion to heat, not cold), and I have some non-fms symptoms, like weird skin tactical issues, and my pain is worse than the vast majority of fms patients.

So she's sending me to a Neurologist. Yay! Because I'm convinced that all the Rheumos I've seen have all done diddly for me.

4: one of the major reasons I suspect it's not fms is that methylprednisolone, a corticosteroid, makes me feel TONS better. A doc gave it to me for an injury about 6 years ago, and it had this amazing side affect of making me feel almost normal. Since then, whenever I've asked a doc for/about it, they've dismissed it, saying, "steroids don't work for fms, so that didn't make you feel better, and I'm not going to perscribe it". I finally convinced my doc in Virginia to give me a dosepak (it comes in a six day "dosepak", where you start off taking 6 pills a day, and go down by one/day) for the week I was going to be driving across the country, but I think that he only did it because he was getting rid of me, and wouldn't have to follow up when I said, "see, it worked - I felt good enough to drive across country!"

I asked my doc to give me a dosepak for Xmas week, as we have tons of different family to see, plus travel. And not only did she, she gave me two, one for this week, too!

5: she figured out why my hips have been hurting so badly. I have bursitis, probably from all the side-lying I do, since I'm in bed so much. She said, having already written the Rx, "hey, the methylprednisolone should really help with that, and if not, we'll do some direct injections."


It is such a relief, knowing that I'm being taken seriously, and finally going to be medically cared for. Without insurance, since I couldn't actually go see her, all she's been doing is calling in or writing my Rxs for so long. I'm going to see a Neurologist, and I've got a referral to a sleep clinic. Yay!!!

Even though it's going to suck pretty hard getting off the fentanyl, I know there's a light (or rather, a baby) at the end of the tunnel!

And did I mention I slept? All night long? 8 hours in a row?

[Ruthla]

Whoohoo! congrats on the good sleep!

I find I feel relatively good if I get 10+ hours of sleep, which I need melatonin to accomplish. And I think that the dairy-free, gluten free diet is helping- I've been on it a month and overall I'm just starting to feel "less fibrofogged" and my AF is here and lighter than it's been in a very, very long time. Hoping this dietary change will lead to actual healing for me!

[CorasMama]

of course, I just kinda ruined all the benefits of the good sleep (and then some), by walking all over creation and finishing my Xmas shopping! sigh. At least I can nap for the next 2 days during the schoolday...

And Ruth, congrats on your DS's bday (or is it congrats on updating your sig?) Foursday... : : :

[Ruthla]

His birthday was in mid November. DD just turned 13 earlier this month though.

[Phoenix~Mama]

I may just cry over the blessed feeling that has just washed over me with finding this thread.

I have had fibromyalgia, nearly my whole life, was only finally diagnosed with it when I was 21... I am now 26 and have learned a lot in the five years since diagnosis.

When I first got diagnosed I was terrified that it meant I could not have children... For a long time I was in intense pain and extremely fatigued.

Recently, I have been blessed with a wonderful SO with a daughter. She has taught me and shown me I am able to push through a lot because I know I have to be there for her. I am also blessed with a very understanding SO.

I am looking forward to getting to know other Mom's that battle this chronic illness and being part of the much needed support for each of you in return.

[Ruthla]

Welcome Jenifer.

I seem to be doing better on a grain free/legume free/dairy free diet. I'm having less pain and fatigue lately, although the differences seem very subtle. The major thing remains respecting my limits and stopping when I need to, so I don't go into a flare and hurt for days.

[Phoenix~Mama]

Thanks Ruthla!


I think accepting and actually following our limitations is always a struggle for fibromyalgics. I know I push myself a lot when I shouldn't, and generally pay dearly for it.

I tend to feel really guilty when I need to nap too. I want to be able to stay up and help my DBF with things when my DSD takes a nap... but sometimes I really need to lay down too.

For instance Christmas Eve... I knew there was no way I'd make it through the night without taking a nap with Alex. I had to go into work at 5 am that morning in order to leave at 1:30 to get home in enough time to take the nap and get ready to go to DBF's Dad's house. I am so glad I stuck to my instincts and did, because we ended up being awake til about 2 am once we finally came home from his Dad's, getting Alex to bed, then waiting til she was fully asleep to do the Santa thing. There was no way I would have made it had I not laid down... or I would have been in serious pain and not much help being Santa, which would have made me more sad.

[Blooming]

Welcome Jenifer!

I'm glad you found us too. There is good support here.

I hear you on the nap thing. I often feel as if I sleep my day away. But your right about listening to those instincts. I know that if I want to give all I can to myself, family, and friends I have to get that extra sleep.

I hope everyones having a good day.

[Blooming]

Originally Posted by CorasMama

OMG!OMG!OMG! I just slept, all night long, all in one chunk! And I just had to share this momentous occasion with someone(s) who would understand. Sure, it took Rozerem, Clonazepam, and a muscle relaxer to do it, but it happened! :

Also, I had an amazing doctor visit last week. First, it was amazing because I could actually go see her, as I haven't had insurance in over a year, and now I have great insurance, having gotten married last month. But, she also listened to me, and we discussed a bunch of stuff:

1: I needed to temporarily (see #2) up the dosage on my fentanyl patch to 100mcg/hr, as I'd got a tolerance built up to the 75s. She did that.

2: in January, I want to work on getting off the Fentanyl patch and the other meds I'm on, and try some alternative therapies, because I want to TTC in about a year. She's going to help me wean slowly and detox (not going to be a pleasant process, as I've been on the patch for 5 years!)

3: I'm not entirely convinced that it's Fibromyalgia. I believe that, within all the diagnoses of fms, it's really some actual fms, and several diseases that they just haven't discovered yet. Why else would there be such diversity in what treatments work? But for me, it's like, none of the treatments I've tried (cognitive, Neurontin - works ok for my RLS, not for my pain, guiafenisin, etc) have worked. Plus, there are a few fms symptoms I don't have (I have an aversion to heat, not cold), and I have some non-fms symptoms, like weird skin tactical issues, and my pain is worse than the vast majority of fms patients.

So she's sending me to a Neurologist. Yay! Because I'm convinced that all the Rheumos I've seen have all done diddly for me.

4: one of the major reasons I suspect it's not fms is that methylprednisolone, a corticosteroid, makes me feel TONS better. A doc gave it to me for an injury about 6 years ago, and it had this amazing side affect of making me feel almost normal. Since then, whenever I've asked a doc for/about it, they've dismissed it, saying, "steroids don't work for fms, so that didn't make you feel better, and I'm not going to perscribe it". I finally convinced my doc in Virginia to give me a dosepak (it comes in a six day "dosepak", where you start off taking 6 pills a day, and go down by one/day) for the week I was going to be driving across the country, but I think that he only did it because he was getting rid of me, and wouldn't have to follow up when I said, "see, it worked - I felt good enough to drive across country!"

I asked my doc to give me a dosepak for Xmas week, as we have tons of different family to see, plus travel. And not only did she, she gave me two, one for this week, too!

5: she figured out why my hips have been hurting so badly. I have bursitis, probably from all the side-lying I do, since I'm in bed so much. She said, having already written the Rx, "hey, the methylprednisolone should really help with that, and if not, we'll do some direct injections."


It is such a relief, knowing that I'm being taken seriously, and finally going to be medically cared for. Without insurance, since I couldn't actually go see her, all she's been doing is calling in or writing my Rxs for so long. I'm going to see a Neurologist, and I've got a referral to a sleep clinic. Yay!!!

Even though it's going to suck pretty hard getting off the fentanyl, I know there's a light (or rather, a baby) at the end of the tunnel!

And did I mention I slept? All night long? 8 hours in a row?

I'm so glad you've found a doctor to listen to you. I'm still working on this. My DR. is going to test my body for large amounts of metal in about three months. She is working with a natropath that says some people with fibro seem to have this. Next stop is the neurologist for me.

And 8 hours of sleep rocks!

[Phoenix~Mama]

How is everyone holding up after all the holiday energy? Doing okay here... a bit tired today though since I couldn't sleep last night. But I slept til noon yesterday!!! It was sooo needed and so awesome!!

[Blooming]

I'm actually doing okay. We really took it easy this holiday. Although I should probably wait and answer that question after this weekend. Some of my family is arriving on Saturday to celebrate the holidays. They're staying in a hotel though. I will say this, if nothing else Fibromyalgia has taught me how to draw some boundries.


Hope everyone else is feeling well.

[supakitty]

Hi Everyone!

I'm flying to Dallas, Texas tonight to see a specialist in neuromuscular disease. Wish me luck!

-Laura

[Ruthla]

Originally Posted by JSMa

How is everyone holding up after all the holiday energy? Doing okay here... a bit tired today though since I couldn't sleep last night. But I slept til noon yesterday!!! It was sooo needed and so awesome!!

I'm completely exhausted. Well, I'm better today than I was yesterday.

I'm trying to figure out if I was fighting off a virus, or I overdid things by getting to bed too late a few nights in a row, or if I ate something that set me off (I'm suspecting gluten contamination from the vanilla extract I used in my eggnog on New Year's Eve. I've had that bottle a while, from before I went off wheat and gluten, and may have gotten flour on or in it.)

[Ruthla]

Originally Posted by supakitty

Hi Everyone!

I'm flying to Dallas, Texas tonight to see a specialist in neuromuscular disease. Wish me luck!

-Laura

Good luck! I hope the travel isn't too much for you.

[Brigianna]

Originally Posted by JSMa

How is everyone holding up after all the holiday energy? Doing okay here... a bit tired today though since I couldn't sleep last night. But I slept til noon yesterday!!! It was sooo needed and so awesome!!

I want to naaaaaap..... but I caaaaaaan't..... 'cause of the baaaabyyyy.... whine whine whine whine whine grumble grumble grumble.

So I'm talking to y'all and corrupting Ruthla's daughter instead.

[Ruthla]

Originally Posted by Brigianna

I want to naaaaaap..... but I caaaaaaan't..... 'cause of the baaaabyyyy.... whine whine whine whine whine grumble grumble grumble.

So I'm talking to y'all and corrupting Ruthla's daughter instead.

[bigeyes]

I survived the holidays fairly well. My migraine doc switched my sleeping aid at my request and I really feel the difference in the daytime. Amitriptyline was really making me drag my @$$ in the daytime, and with the added brain fog from hypothryoidism and topamax, I was feeling like I was brain dead. He took me off the amitriptyline and gave me nortriptyline instead, and I feel much less hung over in the mornings.

I even got through the Christmas baking and candymaking without too much trouble. I did eat way too much stuff I normally avoid, it was nearly impossible to get soy free chocolate in the amounts I needed, and I made some stuff with oreos, ugh, and we ate out a lot, so I am sure I had way too much soy in my diet for the past 2 weeks at least. I've totally kicked caffeine except for my morning coffee, the topamax makes cokes taste funny. It has a side effect of weight loss, too, and last doctor's visit recorded 12 lbs lost, which is nice considering I've got a few to lose.

I found some stuff online linking migraines to tannins, and soy is included in the list of foods, so I have another reason to avoid it. A woman in my thyroid group told me some women had success with avoiding menstrual migraines by using progesterone cream, said that they were a symptom of estrogen dominance. I got a tube and gave it a test flight, and had NO MIGRAINES during my cycle, so I'm sold. Apparently if I were younger I could get a doc to give me synthetic (ick) hormones to do the same thing. : The nurse in the doc's office told me they would prescribe synthetic progesterone if I let them test my hormones, and she didn't have an answer for me when I asked her why they don't test all the 16 and 17 year old girls they put on the pill when they have menstrual cramps, or why they don't prescribe natural hormones.

I'm still confused as to why my fibro symptoms seem to ease up when my hormones (thyroid and estrogen/progesterone) are tweaked. Less body aches, less headaches, less fatigue. It's hard for me to know if it's the hormones, the diet, or the combination.

[Blooming]

You know my symproms seem to wax and wan with my cycles. I do have to suspect hormones have something to do with this.