How to Get the Family to Understand FMS

December 23, 2009

How do your families support you when you have Fibromyalgia?  Do they understand that you are in pain, having a worse-than-usual day even though you look fine, are fatigued even though you just took a nap, and are depressed even though life looks promising?  I’m having a little trouble getting my family to make these connections.  The biggest problem for me is that I’m afraid they think I’m being lazy when in fact I’d really love to have the energy to join them for a trip to the mall or a movie.  I get the feeling that they think Mom doesn’t want to do fun family things because she’d rather stay home and take a nap or read a book.  They don’t get it that I do those things because that’s all I have the energy for some days.

And how do you manage the weight gain from medications?  I’m hopeful that my nutrition counseling will help me lose the 15 pounds I’ve packed on in 3 months, but I know that for my own well-being I NEED to take this medication in order to continue working full-time.  And how is it that I’m still expected to make dinner every night and do the family’s laundry and keep the house clean, when I work a full 40 hours a week, too?

The invisible part of this illness is what makes it difficult for my family to understand that it’s REAL.  I’m not getting a lot of understanding and compassion, and I’m trying to educate them as well as get involved in as many things as I can to make myself feel better—yoga, aquacise, eating right, walking, meditating, medicating, chiropractic, having good sleep hygiene, using theracane to release trigger points—I’m doing all those things and more.  How can they think that this isn’t real?

Categories: Children, Energy, Fibromyalgia, Finding Balance, Kids, Nutrition, Support.

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Heading Downhill Fast

December 7, 2009

Well, the last few days have been really bad for me.  But I have a plan.  So, I have something constructive to look forward to, and I’m hoping that it will work for me.  Basically, I quit taking my Gabapentin because I’ve gained weight on it.  Being in pain keeps me from getting the exercise that I know I need, so it’s a vicious cycle.  When I first started taking Zyprexa it helped my depression so much, but that has been about 8 months ago and I only take 1/4 of a tablet because otherwise I can’t wake up in the morning.  I had a really hard weekend (not that I did anything to make it difficult, it just was), and ended up going to bed at 7:00 last night and waking up still feeling tired at 7:45 this morning.  My daughter was very upset that I didn’t make supper last night, but I just didn’t have the energy.

This morning my mother-in-law came to get my son, as usual, and made me a cup of tea before I sat down to work from home.  I told her I’d been asleep since 7:00 last night and that I’m having a bad episode of depression.  She thinks I need to get back on my medicine and take more Zyprexa, and said that she would help me with meals if I agree to see a friend of ours who is a nutritionist.  This friend does it for a living, so we made an appointment for next Monday to meet with her.  The first meeting is 90 minutes, and the second one is 60 minutes—where she helps you actually lay out a plan.  My mother-in-law called my husband and he thinks it will be great, and that the whole family can do it.  If they don’t like it, they can make something else to eat.  Hmmm, not sure how that will go over, but it’s worth a try.

I do think what we eat has an effect on our brains.  The main reason I’m interested though is for weight loss.  I just can’t feel good about myself when I’m overweight, plain and simple.  I know it sounds superficial and nutty, but it’s the truth.  In my youth I was a ballet dancer, and I’ve already given up so much of that life by taking a job working in a bank and giving up teaching, I can’t stand looking at my pudgy self in yoga class either.  Hopefully this will help me out.  And my husband agreed to go to aquacise with me tomorrow night!

Categories: Depression, Fibromyalgia, Support.

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Aquacise

December 2, 2009

Last night I decided to try out an aquacise class.  We have a real nice facility in the next town over that my family belongs to, and it includes a gym and swimming pools.  I also take yoga there, which I’ll write about another time.  I have read that exercising in the water is good for people with fibromyalgia, and since classes are included in my monthly fee at the gym I made up my mind to go.

At first I was afraid I was the only one there, as the four or five other participants showed up a little late, a little later, and the last one a lot later.  It didn’t seem to matter; everyone was welcomed enthusiastically at whatever time they managed to arrive.  Most had swim shoes or swim sneakers as well as webbed gloves.  They had some gloves I was able to borrow, and the instructor suggested I try the class a few times before investing in the shoes.

One of the women was talking about having had botox in her neck for her fibromyalgia.  Has anyone heard of that before?  I piped right up and said that I, too, have fibromyalgia.  The instructor had invited me to come to a Thursday night class in the deep pool, but after she learned that I have fibro she suddenly uninvited me.  She said the deep pool is cold water and that it wouldn’t be good for me after all.

We did a lot of stuff and it was a harder workout than I anticipated, although I managed to keep up with everyone and not feel completely out of my league.  We seemed to work on the abdominal muscles almost the entire hour, and of course we did a lot of work with our arms.  We used the noodles in different ways—straddling them and keeping our legs out 90 degrees in front of us while doing breast stroke one way and reversing it coming back, wrapping it around our backs and sitting back in the water with knees bent as though sitting in a chair then opening and closing the legs for more abdominal workouts.  We bent the noodle into pretzels and then used them as resistance under the water to push up and down with our arms.

The end of class felt nice, stretching out a little bit to finish up.  My neck was a little sore and stiff from holding it up, but once my abs get stronger I think that will improve.  I went home feeling pretty good about myself.  There’s another class with a different instructor on Saturday morning at 8:15 and I think I’ll try it out.

At about 11:00 PM (class was from 6:00-7:00) my arms were in such pain I couldn’t sleep.  I tossed and turned.  At midnight I took a hot bath to try to relieve the stress, but maybe that isn’t a good thing to do…?  When I was younger I used to dance a lot, and I know that hot baths always soothed sore muscles for me then.  At 1:00 AM I finally took my Gabapentin which I had stopped taking because I was blaming it for causing me to gain weight.  At 2:00 AM I took an Aleve, too.  The last I checked the time before falling asleep was 2:30 AM, and when I woke up in the morning my arms felt much better.

I was supposed to go into the office to work today, but instead decided to make it one of my work from home days.  I can work from home three days a week, and it’s wonderful to have that flexibility.  Besides, it rained all day and I was so tired.  I napped during my lunch hour, and I definitely wouldn’t have been able to do that in the office!

Tonight I’m going to my usual Wednesday night yoga from 7:30-8:45.  It’s a great class at a good speed.  The instructor knows I have issues with my lower back and that I have fibro, so if she goes into something too advanced I feel fine curtailing my activities and sinking back into a nice child’s pose or cobbler’s pose to rest.  But yoga is another post.  Maybe Saturday I won’t use the gloves at aquacise…I’m thinking the resistance they created was more than my puny arms can handle right at first.  But I’m excited about the possibilities of water exercise, because the class is offered Monday, Tuesday, and Wednesday evenings from 6:00-7:00, as well as Saturday mornings.  I’ll try to go to yoga Wed. and Sunday and do aquacise two times a week, too.

Categories: Exercise, Fibromyalgia.

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The Diagnosis

December 1, 2009

When my niece was diagnosed with Fibromyalgia, I went online to look it up to see what it was all about.  I was shocked.  So many of the symptoms matched my own and I was surprised my doctor hadn’t realized it.  He’d been treating me for depression only, which was my main irritation, but because of confusion and inability to think clearly he ordered an MRI and EEG which returned nothing unusual.  He was going to send me to a neurologist when I read about Fibromyalgia.   The pain at the specific trigger points, memory impairment, depression, restless legs, chronic fatigue, anxiety, irritable bowel, morning stiffness, and headaches clued me in quickly.  My doctor recommended a rheumatologist and the rest is history.

I found a great web site called www.fibrohaven.com and wanted to do something similar.  I want to post about alternative therapies that I’ve tried, in the hopes that it may help someone else who suffers in the same way I do.

Categories: Fibromyalgia.

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