What do you say?

My 5 year old said "What is fibro?".  I think she is confusing it with fiber!  I didn't get a chance to answer her because she siad she was confused and couldn't think of the right word.  So, that buys me a little time to think about how I want to explain it to her.  I feel so grateful that I am explaining something that while unpleasant, isn't life threatening or scarey.  I feel so much pain for mothers who might have to explain something more serious to a child...such as a terminal illness.  I also don't want my daughter to dwell on it and so I am considering never saying the word "Fibro" in front of her again.  I think that it might become the forbidden word.

While at the chiropractor today, I was given some new exercises to do as part of my therapy.  I do them there at the office and while I was doing them, another women was there with me.  She asked me if I had suffered from a back injury.  I said "No" but felt the need to explain.  But, it was a wierd feeling.  I have never told a stranger that I have fibromyalgia.  I blurted it out, quickly.  She gasped and said "That's terrible!!!".  I didn't know what to say.  Yeah- it is terrible.  Yeah - I hate that I have it.  But, it could be a lot worse.  She then said that a friend of hers had it and all I could think to say was "Yeah, it isn't fun".  I wish I would have told her to offer her friend support, I am sure she needs it.  We all do.

Then I had to tell my Chiropractor that I was in pain from the "bad" Dr. last week.  I told her that the last adjustment hurt and that I did really like the Dr., but it was too rough and painful.  I told her that I knew it was "just me and because of the fibro."  I wish I didn't have to explain.  How can you even describe it to someone?  No wonder the Doctors took so long to diagnose me, I was unable to put it into words.

My flu shot is still sore and a red circle surrounds it, about the size of a silver dollar.  I think its normal though, for someone with such sensitive skin. 

Flushot - Yoooooouch!

I got a good night's rest last night and woke up on time today.  No tyelenol pms or muscle relaxers, just good old fashioned sleep.  I don't have a problem with sleep in the way that I usually have no difficulty falling alseep or staying asleep.  But, I am a light sleeper.  I tend to hear every little noise.  I am getting better about it now that the kids are getting a little bigger, but I still hear them when they make noises during the night.  So, I know I sleep light.

But, I managed to get up on-time and get to work on-time.  I recently received a promotion and nice raise so it is important to me to get to work on-time.  It is always a struggle though.  Even when I am on-time, something usually happens to cause me to be late.  I am working on this.  A goal of mine is to be one of those people that pops up in the morning.  Is that unrealistic?  It is probably too much pressure to put on myself, but I am not a morning person or a night person!  I feel like I should at least be on one end of the spectrum!

I had a flu shot today, my arm is sore.  Nothing unusual though, most people get a sore arm.  But, man does it hurt.  A pinch my ass.  I will never tell my kids its a pinch again- it hurts!  But, I believe it is a worthy cause if it prevents me from coming down with any kind of flu.  So far, we have kept H1N1 out of the house, but it's still infecting people.  The vaccine doesn't seem available for everyone yet, so we have only gotten the regular vaccine.

I wonder if I should tell my chiropractor that I got the vaccine.  I don't think they believe in that, so I should probably keep it to myself.  I had an interesting conversation with my father-in-law last night, about fibro.  He is an orthapedic surgeon and he prints articles for me from medical journals.  It's nice and he really seems to try to find information for me.  The article highlighted what seems to work and what doesn't.  Again- aerobic exercise was at the top of the list.  Seems cruel that people with all this fatigue and soreness would feel better if they would just pick up the pace and exercise.  I wish I could do more of it, I really do.  I know it would help.  But, this fear is always in the back of my mind, fear of how I will feel later.  Will I pay a price?

I see the chiropractor again tonight, but I am starting have doubts about the effects.  I do think it helps in some way, but I am still stuck with fibro.  It's not going anywhere.  Last night I reached into my daughter's bed to get something for her and my arm pushed slightly on the wooden frame and it hurt.  So sore, a lingering pain where I was barely touched.  Today, if I rub my legs for any reason, they are very tender and sensitive.  I just don't understand.  What is the trigger?  There seems to be no rhyme or reason to this.  It's there one day and not the next.  I just wish I knew how to control it.

Headaches

It has been a very bad weekend.  On Friday afternoon, I went to the chiropractor.  As I mentioned in earlier posts, the normal Dr. I see isn't there on Friday.  So, a different Dr. did the adjustment.  It was the same Dr. that did it last week and she is just not at all understanding of a patient with fibro.  The minute she put her hands on my lower back, I felt pain.  Not just any pain, the fibro sore skin, bruised pain.  She pushed hard on my back and just kept on going.  When she got to my neck and turned it to the side, it wouldn't crack.  I felt so sore.  I left with a headache.  I will never go to this Dr. again.  I have seen her twice now and both times she has hurt me.

Just to re-iterate a previous post, if you are considering seeing a chiropractor, make sure they have experience in treating fibromyalgia.  It should not hurt.  Although I had this bad experience (that continued to cause lingering pain all weekend) I still believe there is a place for chiropractic treatment for fibro.  Overall, my quality of life has improved since I started going.  But, the Dr. I normally see is very gentle and she does not hurt me.  When I leave, I usually feel better than before I went in.  She touches my back gently and I can tell she really tries to be extra careful.  We need more of these types of chiropractors! 

So, I was in a bit of a flare all weekend with non-stop headaches.  I worked all day Friday, went straight to the bad chiropractor (lol), then headed to friend's house to meet up with my husband and kids.  I quickly ate some pizza and then started to get on their Halloween costumes.  We took them to a Halloween event at the public library and then home!  So, I left the house at 7:00am and didn't get home until around 8:30pm.  Then, by the time I got the kids to bed I was ready to collapse.

Moving on to Saturday...  My mother-in-law had a jewlery party Saturday morning at 10am.  I got up, showered, packed the kids halloween costumes, got my daughter ready for swimming lessons and headed to the jewlery party (alone).  I stayed for an hour, bought some jewlery (mostly Christmas presents- yay), and then headed over to the healthclub where my daughter was at her swimming lessons.  I got her out of the pool at 11:30am and helped her shower and get dressed.  By now we are approaching noon and my husband and I decide to take the kids to Panera bread for lunch.  My head is still pounding from the adjustment on Friday.

I took two Tyelenol and that kept the headache at bay.  After lunch, my husband left to get some work done and I took the kids to a friend's neighborhood for a Halloween parade.  The rain held off, but it was chilly.  It was also a 2 mile walk.  I had the double stroller b/c I knew my 3 year old would never go the distance.  But, this gave my 5 year old the temptation to sit too.  Walking up and down the hills pushing 75 lbs was not easy.  Plus, it was chilly and cloudy and the sun was nowhere in sight.  It was a great time for the kids though and I made it.  By the time we marched in the parade and then got back to my friend's house, it was getting close to dinner time.  The kids were hungry, so I met my husband at a restaurant for dinner.  I hate eating out so much.  But, once again, I left the house at 9:30am and was still not home in time to cook dinner.  If I were to leave and go home, start to cook, the kids would be in complete melt-down mode.  They were beyond giving a snack to hold them over.  They had goodies at the parade and they were coming down from the sugar high.  They needed dinner and they needed it fast.  I was also getting extremely tired and hungry myself.  All I could do was imagine myself snuggled in front of the fireplace under a warm blanket.  I kept telling myself that was what I was going to do when I got home.  But, I ended up going straight to bed after the kids.  It had been a long, cold day.

Sunday came too fast.  The kids were wonderful in that they let my husband and I sleep until 9:30am.  They slept until 8:30am and then played for awhile before waking us up.  We all got up and had a nice breakfast together.  My husband was so sweet, he got up and made coffee and eggs.  He takes such good care of us.

My daughter has been wanting to go to the healthclub playroom for awhile now.  We haven't been there much lately and when we do go, she is usually swimming so she doesn't get to go to the playroom.  So, after lunch, I packed up the kids and headed off to the gym.  I am so glad I did this.  I took 45 minutes to myself and just walked the track.  I am staying off the treadmills for awhile to see if I can get just as much exercise on the track.  It was great to steal some time to myself and the kids love being there in the playroom.  So, it worked out great.  A long Target shopping trip followed and once again, home at 6pm and the kids are starving.  It was cereal for dinner.

It was not the healthiest of weekends as far as eating goes, but I just can't seem to slow down.  As it was, I decided not to take the kids to the zoo yesterday, although it was a beautiful day.  A "fibro choice" - no zoo.  I knew that might in fact put me over the edge. 

So, here we are - Monday morning and I am bracing myself for another long day.  I will leave work and head straight to the in-laws for my father-in-laws birthday.  At least I won't have to worry about dinner again!  But, the house is still a mess and I didn't get anything done all weekend.

My legs are a little sore from doing lunges while walking (not sure how to spell that!).  But, they feel only sore - like anyone would feel after not using a muscle in awhile.  Sometimes when I exercise, I can hardly walk the next day.  I mean, I can walk, but limping around and pain with each step.  Today, I really think this is the kind of soreness most people would have - its not fibro!

I am still having a headache though.  I will take more tyelenol and talk to the "good" chiropractor tomorrow about this experience.  And, I just wish I could stay up a little later tonight.  I am still sleeping a lot and struggling to wake up everyday.  I wish I could be either a morning person or night person.  Right now, I am neither.

GOOOOOD MORNING!

As I have mentioned before on this blog, when a person with fibromyalgia has a good day, we want to scream about it and tell the world!  I feel great today!

I did go to bed very early again last night, I listened to my body.  Lack of sleep is probably my biggest trigger to pain.  I hate the fact that I will probably always be someone that needs more sleep than the average person, but I have come to accept that.  What I cannot accept is dealing with pain everyday for the rest of my life and not doing the things that I want to do.  This is my biggest reason for trying alternative medicine. 

Today, 4 days after the camping excursion, I finally feel fully recovered.  It has taken my body a few days to rest and feel normal again.  I am out of my fog.

Yesterday was an interesting experience at the chiropractor's office.  My skin was "mildly" sore before arriving.  I had an itch on my leg and when I scratched it (without thinking) I felt the fibro pain.  Pain instead of relief from scratching the itch.  It's a throbbing pain that lasts a few minutes, sort of a reminder to me that the fibro is there even when I think it's not. 

So, I was in the therapy room before seeing the dr. for my adjustment.  I use a TENS unit for 8 minutes and then a wave (massage) table for another 8 minutes.  Sometimes I do this before my adjustment, sometimes after...it all depends on how busy they are.  So, I noticed that most people in the therapy room have their TENS unit set way higher than me.  I started at a 5-6 and then saw people coming in and setting theirs up to 15-25.  So, I decided to turn mine up.  I set it up to 10 the other day.  I feel much more sensitivity in my right shoulder, so I know my nerves are not functioning equally.  It was too high and it kind of hurt.  To me, this just proves that people with fibromyalgia have a higher sensitivity to touch.

On to the wave table.  Again, mine was set fairly low.  A wave goes up and down your back and it generally feels pretty good.  I kept seeing people using the highest level of the wave table and so I decided to give it a try.  Ouch!  It hurt my shoulder blades and I could feel pain in my lower buttocks area.  Another indication that I am not able to tolerate touch like most people. 

Interestingly enough, by the time I got in to see the Dr. for my adjustment, she could feel the tense muscles in my shoulder and pin pointed the exact spot of my pain.  She was unaware of my experience in the therapy room.  This makes it more credible to me, that she can feel where it hurts and work those areas.

Needless to say, I feel great today.  I hope I can maintain this over the weekend and I will not mess with the TENS unit or wave table again.  As much as I am fighting it, these are little reminders that I need to take it easy and listen to my body.  I am not "like" everyone else.  I need to stop trying to be and just accept the little ways that I feel better. 

A "Lite" Flare

Sorry it's taken me so long to post, I have been recovering from the long weekend.  Friday afternoon, my husband and I went to the cabin and joined a bunch of other couples in the cold rainy forest!

It was slushy and very cold, but we did have a good time.  My husband and I used the time to reconnect and it's always nice to spend time with him away from our children.  I love my children more than anything in the world, but couples do need to find time to be together. 

I came home on Sunday and felt alright, but very tired.  Monday was much worse though, this is when I really started to feel my fibro.  My eyes hurt to open, my head was cloudy, and my muscles hurt again.  It's been awhile since I felt this bad, but I still didn't feel as bad as I usually do.  I think the weekend finally caught up with me.  As I mentioned in previous posts, I think alcohol does trigger the fibro.  There was quite a bit of alcohol over the weekend!  Also, I forgot to bring my vitamins, so I am sure that didn't help. And, finally, the cold.  I do believe the cold can cause a flare up.

So, yesterday I felt the worst.  I took tyelenol PMs and tried to get to bed very early.  As I laid in bed, my own body against the mattress hurt.  I laid down and wished I could float.  It's such a strange kind of pain.  I woke up a little better, but I knew the pain was still there when I put my deodarant on...the pressure of the roller under my arm hurt.  I HATE that type of ache. 

I go to the chiropractor tonight, start of week 3.  I hope it can diffuse this flare- is that possible?

Going Camping

Well, I am getting ready for our camping trip...luckily in a cabin.  We are expecting 3-5 inches of snow !!!  Please say it isn't so!  I am hoping I don't flare up, it will help that I should be able to sleep as much as I want.  Hope that isn't too tempting, I might want to sleep the entire weekend away.

Today was my 6th chiropractic adjustment/therapy.  I do consider this to be theraputic.  It doesn't replace my need for a doctor, but it feels good and I know it's helping...that is all that matters.  So, I have 2 more weeks of intensive therapy and then I will start to go less and less.  I am a little worried about going less because it seems to help so much.

Having the right chiropractor also makes all the difference.  My regular chiropractor is a gentle, female.  It never hurts and she is so gentle that I don't even notice my bruised feeling skin.  Today, one of the other female chiropractors did my adjustment - OUCH!  It hurt!  Not bad enough to stop it, but enough to think I wouldn't have gone back if she did my first adjustment.  So, finding somene you like seems to make all the difference.

Well, I am off to the camp site.  Wish me warm thoughts!  I won't be blogging again until Sunday or Monday.  Hopefully, it will be all good and I can say how I managed to escape a flareup!

Medication

I have completed my 1st week of chiropractic treatment.  I am going to go 3 times per week - for 4 weeks.  Week 1 is complete.  I can honestly say, it is helping.  I haven't been hobbling around in the morning with the pain in my legs.  But, I also haven't been doing any exercise lately.  Maybe that is the true test.

Whatever the reason, I am just going to accept it and be happy about it.  I am going to live in the moment and enjoy some pain free days.  I am not going to wait for the pain to start or read into it too much.  I am pretty darn happy about it!

As I continue with chiropractic treatment, I wonder if I can acheive my ultimate goal:  cut out medication.  I hate taking pills everyday and if I can get off some of it, that would be wonderful.  I know many people with fibro take a lot more than I do, so I can't complain much.  But, it's an expense and a pain in the butt remembering to take it everyday.

My routine for medication is:

• GNC Women's Ultra Mega Vitamin with breakfast.  This vitamin rocks!
• YAZ birth control pill & Effexor with lunch.  I really don't need birth control, my husband had a vasectomy after Austin was born.  But, I take it because the pain with my periods was so bad (since Austin's birth) and it was irregular, plus endometriosis..  I also had dramatic mood swings during this time, so it helps with that as well.  Effexor is what the dr. prescribed for the fibro pain.
• Zyrtec before bed.  This stops the wierd itching I get if I don't take it.  It's expensive over the counter, would love to drop this one!

Sometimes muscle relaxors or tyelenol pm before bed.

I have had no difficulty getting out of bed the past 2 mornings either.  I haven't exactly jumped right up, but I haven't been as sleepy and foggy in the morning.

Sore, Rainy Day

Well, I woke up a little sore today.  When I first woke up (with great difficulty) my legs felt like bricks.  I know the feeling all too well.  My legs were stiff and heavy and I really just wanted to go back to sleep.

Very disappointing since I have felt great the last 2 days.  I am trying to track what could cause the change, here is my list:

1. I just remembered that I forgot to take my Effexor yesterday.
2. I didn't go to the chiropractor yesterday.
3. I had a longer than usual day (gymnastics and then bath for the kids).
4. I fell asleep closer to 11pm (later than usual for me).
5. It's cold and rainy outside.

Ok, so here is my theory.  Since I forgot to take the Effexor yesterday, it is really impacting me today (as opposed to when it happened).  This disrupted the routine and made it more difficult to fall asleep.  So, this leads me to be a little achy today.

So, I will get back on track with the Effexor.  Maybe it helps more than I realize?  And, I see the chiropractor after work.  I hope this will all lead to a great weekend.

On a positive note, I lost 1.5 lbs.  I have been trying to lose weight, but it isn't easy.  I am not overweight, but I am on the high end of the BMI scale healthy range.  I really want to take off 10 more lbs. 

Fat literally hurts on me.  I thought this was normal, but in learning about fibro, I have come to realize fat isn't supposed to hurt.  When I gain weight in my legs, the pain is much worse.  So, as hard as it is to stay slimmer, I know I feel better when I weight less. 

I have a busy weekend ahead and hope to I have the energy levels to keep up.  Tomorrow is our normal swimming lesson routine.  I would love to get to the gym a little early though and do a 30 minute workout before Mercedes' swim lesson.  But, I am going to make the right choice and sleep in a little.  It's all about choices right?  That sucks!!!  But, I know if I push myself too hard then I am setting myself up for trouble.

After that, I am going to get my haircut, which always makes me feel a little better.  I really do try to keep looking my best, even if I don't feel my best.  I don't want sympathy from people so I am not going to walk around looking like I feel.  If I did that, I would look 30 years older!

Sunday we are going to a Halloween event at the amusement park.  The kids will get dressed up and trick or treat around the park.  It's a LOT of walking, but it is so fun for the kids.  My goal is to pace myself to get through this day without any problems.  Sunday and Mondays tend to be difficult.

I have Monday off for Columbus day, which is the only reason we are doing the amusement park on a Sunday.  On Monday, it is a pretty simple day, taking the kids to see the Toy Story 3D marathon.  It doesn't involve much physical activity, so that should be ok. 

The hard part is that in between all of the above- lots of cleaning and laundry!  My husband has been awesome this week at keeping the house in pretty good shape.  But, there is still more to do.  And, my mother is coming into town (can't wait) on Wed. so I want to get some things ready for that too.

All for now, my shoulders are getting sore while I am typing.  I am going to go stretch and try to make the best of this rainy day.

Feeling great today!

Unfortunately, when you have fibro, you tend to make a big deal when you have a good day.  Sometimes I wonder what it must be like to feel this way every day- as most healthy people do.  Most healthy people wake up pain free, refreshed (if they actually sleep well) and go on with their day.  They don't have to stop and reflect and tell the world "I feel good today".

I also worry about how long it will last.  Will I still feel this good in the afternoon?  Will I be able to get some things done around the house after dinner?  I want to bottle up the energy so I don't lose it.  I want to keep it on reserve for when I might really need it.  Today will be a long day anyway.  I will work until 4 and then go home, grab the kids, and head to gymnastics.  We will be there until 7:30pm, sometimes we stop for ice cream on the way home, and then they need a bath before bed.  So, there is no time to be tired today. 

Last night I saw the chiropractor again.  I had my adjustment (it's more fun to say I was cracked) and then therapy with the electrical stimulation and massage table.  I leave there feeling so good!  I have decided I drive safer too because I can actaully turn my neck all the way around to see what is coming!  lol

Well, the real question is whether or not it works.  After only 2 sessions, I am leaning toward yes.  But, it's still really too early to tell.  I haven't taken any muscle relaxers or tyelenol PMs for 2 nights.  I have slept without them pretty good, with a wakeup between 2-3am.  But, I have been able to fall back asleep within a few minutes.

So, my head is clear today - no fog.  I really think its because I haven't taken anything at night.  I do think that stuff lingers in the morning, making it even more difficult to function and get moving.  So, I don't know if I feel good today from the adjustment/therapy or just from not taking any crap at bedtime.  Time will tell.

Feeling Motivated

So, as the cycle goes, I had 2 days of pain and today I feel much better.  Not 100% pain free, but so much better.  As the fog clears and I feel as though I can manage this, I start to look for ways to make myself feel better.  I am always trying to figure out what I did differently yesterday to make me feel so much better today.  As if I can figure out the rhyme and reason of fibromyalgia.

So, last night I stretched out across the entire bed when falling asleep (my hubby and the dog weren't in bed yet).  So, I thought maybe this helped and came up with a theory:  once Simba (my small Shih Tzu) comes to bed, she likes to sleep on my feet or around my feet.  This leaves me kind of cramped while I am sleeping.  Maybe I need to just push her out of the way and take up more space.  As I told this to my husband this morning, he laughed and said I already stretch out and take up most of the space.  So- that theory is out the window!  :)

Another thing I did well last night was take my Zyrtec.  I take Zyrtec every night before bed, it keeps my skin calm.  If I don't take it, I tend to get itchy all over.  My hands and feet burn in a strange way that is more like itchy...but burning.  I have had a hard time explaining this odd itching thing to my doctors.  If I go 2-3 days without Zyrtec, it gets really bad and can sometimes lead to hives and blotching.  But, Zyrtec does the trick.

Of course with all of the itching, I have had extensive allergy testing.  No food allergies that they can find and no elevated levels of histamine.  So, what is causing it then?  Doctors do not know (again).  They said it could be a preservative in a food or something like that, but its nearly impossible to figure out.  So, if Zyrtec does the trick- then we will continue that expensive treatment.  Since it went over the counter- its pretty expensive.

But, anyway, I do think when I take Zyrtec at night - I wake up clearer.  I guess its one less thing my body needs to fight. 

Other things that I think can help is music and stretching.  If I put music on my computer while I work, it lifts my spirits and I am distracted from the pain.  It's still there, but I am not thinking about it.  And, stretching.  I am going to try stretching 3 times a day to see if this helps at all.  I have no evidence that it will, but I am going to give it a try.

I go to the Chiropractor tonight and I am a little worried that they are going to try to get me to come in every day.  I can't afford that.  I think I will have a $20 co-pay and I can't afford to pay that daily.  We'll see how it goes.