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Old 11-25-2007, 11:52 AM
 
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Hi all,

I'm new to this tribe, but not to MDC and certainly not new to fibro!

My fibro was diagnosed 13 years ago, when I was 19, by a wonderful ER doc. My bf had called an ambulance, because I had woken up in so much pain that I was screaming and hysterical. The ER doc took my history, gave me some drugs , did the pressure points test, and told me, "you have fibromyalgia. You need to see your doctor on monday, and if she doesn't believe you, switch docs til you find one who will." Because this was back in the bad old days, when docs mostly just told fibro patients, "there's nothing wrong with you, it's all in your head." :

My fibro was fairly mild, only affecting my life when I had flares, and they were nearly always pretty short. The only time it was really a problem was during pregnancy, when I couldn't take meds. At least when she was bfing, I could take ibuprofen, or if I needed something stronger (rare, and almost never a narcotic, usually something else, which name escapes me), I could pump and dump for a while, as I had a HUGE backup of pumped milk in my freezer!

Then came 2001. I was living with my best friend, her kids, my dd, and my fiance. My bff and I had been raising all three kids together for four years, since we were pregnant with our dds, who are five months apart. Her ds is a few years older, and was experiencing some problems. He was about to be diagnosed adhd, and his teacher suspected the autism spectrum.

So, in 2001, the following happened:
Jan 2: my mom and stepdad told us that my mom, grandma to all three kids, died after a three and a half year battle with breast cancer, had only 6 months left. The docs had done all they could. So we moved the wedding date from August 8 to March 10, so she could be there.

Feb 2: my mom passed away. It came a lot quicker than we expected. To this day, I can't talk about it without crying (see below, re. PTSD)

Feb 10: when I pick my bff's ds from tae kwon do, and he has a huge meltdown. It continued to escalate, including one moment in the car, when he seemed to calm down, and said, in a very contemplative voice, "someday, I'm going to kill you." : the rest of the evening was horrible, including a worthless trip to the ER. He was trying to hurt anyone who came in range, so had to be restrained. As he growled at him, the doc checked his ears and throat, pronaounced him fine, and sent us home w/ benadryl to knock him out, which we did, for the girls' safety.

Feb11: I spend the whole day admitting him into the local psychiatric hospital for evaluation. I did this, because bff's boss told her she couldn't have the day off, by pain of losing her job. He stayed in the hospital for 10 days. My uncle, a specialist in the extremely gifted and twice exceptional kids, came out from TX to evaluate him. I say this as an example of how much these kids were really considered by my family to be my kids too.

Feb 21: bff's ds comes home with a diagnosis of adhd, asperger's syndrome, and something else I can't remember ATM. They said he'd had a psychotic break, but was ok now, and he had a lot of meds.

March 10: I get married. (To my now dxh)

Late March-ish: I take incompletes in all my classes. I just can't handle all the grief and stress.

June 1: now dxh and I and dd move into our own apt. The lease on the house we'd all shared would be up June 30, but dxh can't take living w/ bff's ds anymore (which is understandable, since he has no attachment to bff's kids). So we pay double rent that month, and move our stuff out at a relaxed pace.

June-July 4: bff screws us over to the tune of $10,000. She did a lot of stuff that was just totally irresponsible that affected us. I now have to grieve the separation from these other two kids, who I consider mine, AND the betrayal of bff. It was like a divorce, seriously.

Sept. 11: dxh and dd come home early, as she is enrolled in the montessori at his work, a government contractor! I lose clients, and a woman I talked to all the time over a project, in the attack on the pentagon.

Mid-late Sept.: I get a migraine, and a fibro flare. They both last for ~6 months.

Since 2001, I've gone from a mild case of FMS, to a severe case, with an additional diagnosis of chronic fatigue syndrome. One of the main causes of my divorce, a year and a half later, was dxh never fully believing how sick I really was. Also, three MDs and an ND all said that I needed to move back to Seattle (home) for my health, that the weather, pollution, and isolation from friends and family, of living in the DC area was making me sicker. He said that, to him, that wasn't reason enough to move.

I've recently (2 yrs ago) been diagnosed with PTSD from the cummulation(sp?) of everything that happened in feb-sept of 2001. I had always thought PTSD had to come from a single traumatic event.

I haven't had insurance for the majority of the last 3 years. Luckily, I have a doc who is willing to work with me, and only insists on seeing me once a year. I just pick up my Rx at the reception desk every month.

My current regimen is: a 75mcg/hr fentanyl patch. Ultram or Vicodin for breakthrough pain. Neurontin, 2400mg nightly. Zanaflex nightly as needed. Lunesta as needed. I'm supposed to be on something for my depression, but I haven't been able to see the doc in a long time, and she doesn't want to (and shouldn't) prescribe antidepressants w/o follow-up.

The only time in the last 6 years that I've felt "normal", like nearly completely healthy, was for a couple months in late 2002, when I was going to a chiropractor and acupuncturist three times a week.

I just got married (yay!!!) And now I have insurance (yay!!!) So I'm going to see my doc and a naturopath soon.

I want to find a way to get off all the meds. We want to have two more kids. That means, A: I need to be off any meds not safe for pregnancy and bfing, and B: I need to significantly reduce my pain level and significantly increase my energy level.

Sorry this was so long. But that's my journey with FMS and CFS (and depression and PTSD).

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Old 11-25-2007, 12:00 PM
 
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Have any of you heard of the spoon theory? It's a great way to describe to others, how we feel, and how we can feel and function from day to day.

http://www.butyoudontlooksick.com/20...oon_theory.php

It was, I think, originally told by someone with lupus, but it applies just perfectly for fms and cfs.

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Old 11-25-2007, 01:42 PM
 
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Welcome Cora's Mom! Thank you for sharing your story.

I read your post and am so sorry you have gone through so much. I to have PTSD and Fibro and am in the middle of a very painful flare. (The holidays have never been a good time for me).

I am glad you have found a new partner to be with and that you are working towards your goals and dreams. I admire you for that, it can be very hard to to do with the Fibro.

I have heard of the spoon theroy. I actually have a small spoon pin that my mom ordered for me. Unfortunatly, as my friends move forward with their lives, children, and careers I seem to be left further and further out of their lives. :

They like to pretend I am not as sick as I am and don't want to deal with anything that would remind them.

The only people who seem to understand are my family (who are also far away). We cannot move closer to them because a major part of the reason I have PTSD is due to them.

I am rambling now. I'm glad you've joined us.
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Old 11-25-2007, 02:29 PM
 
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Welcome CorasMama. I'm sorry you went through all that yucky stuff in your life, but I'm glad you've found us.

Yup, I'm familiar with the Spoon Theory. I found it years ago, I think before I even found MDC.

Now that I've been approved for SSI, I think my parents finally "get it" that I really am sick and I'm not just being lazy or making any of this up.

Ruth, single mommy to Leah, 19, Hannah, 18 (commuting to college), and Jack, 13(homeschooled)
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Old 11-26-2007, 08:53 PM
 
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welcome corasmama. What a story.

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Old 11-30-2007, 06:58 PM
 
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I just need to vent. I am so dam tired of all this. DH just had to say no to a really great oppurtunity came his way and he had to say NO because of ME.

I feel like I am ruining my famlies life because I am always sick.

I feel like they would be better off without me.

I keep trying to get a job-no luck. I've been trying for a year.

I HATE FIBROMYALGIA!
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Old 11-30-2007, 07:29 PM
 
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Reading this thread and thinking of everyone. -Laura
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Old 11-30-2007, 07:34 PM
 
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Hey I have a question - Since this is likely my diagnosis - Does anyone here struggle with a feeling of weakness or a feeling of trembling (not necessarily that someone might observe but that you feel internally) with exertion or when the pain is really bad?

-Laura
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Old 11-30-2007, 07:37 PM
 
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Originally Posted by supakitty View Post
Hey I have a question - Since this is likely my diagnosis - Does anyone here struggle with a feeling of weakness or a feeling of trembling (not necessarily that someone might observe but that you feel internally) with exertion or when the pain is really bad?

-Laura
yup, I had this on Monday.
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Old 12-01-2007, 12:09 AM
 
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Okay another question - When the pain is at its worst which is aching, burning pain in my arms and legs, I try and take a nap and find that I still feel the pain when I am laying down and when I wake up (if I can fall asleep) I still feel sore and tired. Does this happen to anyone else here?

-Laura
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Old 12-02-2007, 01:29 PM
 
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Originally Posted by supakitty View Post
Okay another question - When the pain is at its worst which is aching, burning pain in my arms and legs, I try and take a nap and find that I still feel the pain when I am laying down and when I wake up (if I can fall asleep) I still feel sore and tired. Does this happen to anyone else here?

-Laura
Yup, all the time.

Ruth, single mommy to Leah, 19, Hannah, 18 (commuting to college), and Jack, 13(homeschooled)
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Old 12-02-2007, 01:41 PM
 
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Happens to me, too. I switch from days of pain, to days where my knees will randomly give out and I'll fall on my butt, or I'll suddenly drop objects.

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Old 12-02-2007, 04:23 PM - Thread Starter
 
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For me, anything where I stay in the same position too long is going to be painful. Driving or riding for more than an hour, sitting in a theater or at a desk without getting up, sleeping, it's going to be really hard to get up because I'll be stiff and kind of stuck.

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Old 12-03-2007, 04:53 PM
 
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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
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Old 12-03-2007, 05:00 PM
 
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I'm so sorry for your loss.

I know I always feel worse physically when I'm upset emotionally- plus you've got all those postpartum hormone shifts going on. Take care of yourself mama.

Ruth, single mommy to Leah, 19, Hannah, 18 (commuting to college), and Jack, 13(homeschooled)
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Old 12-03-2007, 06:31 PM
 
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Supakitty- I'm so sorry. Ruthla makes a good point about taking care of yourself.


I hate being in pain all the time.

DD complains about aches and pains more than most kids her age. She has a foam mattress, and I have to put an eggcrate foam topper on it, or she wakes up in pain. I don't know any other kid her age who needs as much sleep as she does. Seriously, she is nearly 10, and she's in bed by 7:30p, and asleep by 8:30-9p (she reads herself to sleep, because she has trouble sleeping), and sleeps til 7:30-8:15a. I don't want to tell her this, but I suspect she has juvenile fibro. I've surreptitiously done the tender points test, and she has 14 of the 18. The diagnostic standard is 11 or more. She also feels other pain more, like I do, like the pain receptors are more sensitive. But I can't get her doctor to take me seriously.

I don't know what to do about it, but for now, I'm kind of just leaving it, and keeping an eye one it. I don't want to tell her about my suspicions, because she tends to be a bit of a drama queen, and also I don't want her to think there's anything holding her back. If at some point, it starts affecting her life, I'll talk to her about it. I know, as a teenager, I would have loved to know what was wrong with me. I thought I was just a wimp and a whiner like my dad told me. It was such an eye-opener when I was diagnosed at 19, and told why I was hurting so much!

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Old 12-03-2007, 06:57 PM
 
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I have the same suspicions about my 11yo- but I honestly don't know what I could possibly do to help her even if it is the case. If the GF diet helps me significantly, I may have her try it as well- but I'd rather test this out on myself first.

Ruth, single mommy to Leah, 19, Hannah, 18 (commuting to college), and Jack, 13(homeschooled)
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Old 12-03-2007, 10:33 PM
 
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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
Just sending hugs and support momma, i am so sorry.
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Old 12-04-2007, 01:48 AM
 
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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!
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Old 12-04-2007, 02:46 AM - Thread Starter
 
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I had one done and what they found was that I was not getting to the REM state. Once they drugged me into sleep I actually remembered a dream for the first time in something like 10 years! So while I didn't have sleep apnea, I had an unnamed sleep disorder.

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Old 12-04-2007, 09:41 AM
 
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Originally Posted by supakitty View Post
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.

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Old 12-04-2007, 11:50 AM
 
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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.

Quote:
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.
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Old 12-19-2007, 02:41 PM
 
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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?

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Old 12-19-2007, 02:46 PM
 
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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!

Ruth, single mommy to Leah, 19, Hannah, 18 (commuting to college), and Jack, 13(homeschooled)
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Old 12-19-2007, 08:52 PM
 
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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... : : :

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Old 12-19-2007, 09:13 PM
 
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His birthday was in mid November. DD just turned 13 earlier this month though.

Ruth, single mommy to Leah, 19, Hannah, 18 (commuting to college), and Jack, 13(homeschooled)
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Old 12-26-2007, 01:15 PM
 
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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.

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Old 12-26-2007, 01:43 PM
 
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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.

Ruth, single mommy to Leah, 19, Hannah, 18 (commuting to college), and Jack, 13(homeschooled)
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Old 12-26-2007, 02:00 PM
 
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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.

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Old 12-26-2007, 03:03 PM
 
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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.
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