Photo Therapy

It’s been very silent around here. Honestly?  I’ve ran out of words. It’s the the same pain, the same frustrations. Doctors who don’t listen, weather flares….

I’m running out of ways to express it…
Until now. Recently someone suggested photography therapy and I’ve been giving it a try. It has been very good for me. 

I feel like this is finally a way to “show” my life with chronic pain. So…here are my introductory pictures. These pictures show my life…some struggles, joys, things I do to cope and the people who support me…just a little bit of “me” with a side of Chronic pain. 

Hopefully they tell the story I want them to…

   
    
    
    
    
    
    
   

 

So Damn Lucky…

I had to take a step back this week after getting extremely frustrated people were not understanding what I was going through as the weather changed, I flared, I was swollen in weird places, I was tired, I was grumpy and I just wanted someone to know exactly what I was going through.  I’m beyond frustrated to start over with a new diagnosis.  I don’t want to learn how to manage all over again.  I don’t want to re-learn how to explain it to people all over again. I just don’t want to start from the beginning…all over again.

But I have to…

Sometimes I think the pain and exhaustion of my chronic illness is so strong it should read across my forehead.  I had to come to the realization, once again, that beyond some visible swelling or skin issues, my conditions are invisible.

If I tell someone I’m hurting, they don’t know what that entails.  I wanted to visually put into perspective what is going on and hope that can help to clarify a little of what I’m learning to go through.

There is a typical body “graph” at doctor or physical therapy offices that want you to “show” them where you’re hurting.  Usually the patient circles an ankle, or maybe a spot on their back, or maybe both knees…

Welcome to the “where does it hurt” body graph for me…

On any one day I could hurt in one of these places, ten of the places or I could start the day hurting in one place and it moves to another.  On my very worse days, I could hurt in all of them all at once.

 

 

Here is where I hurt from Fibro…

Fibro2


Here is where I hurt from psoriatic arthritis….

PSA2

Put them together and I look like this….

Combined2

Add headaches, irritable bowel, methotrexate side effects, extreme fatigue and memory loss and I have quickly realized learning this new diagnosis with my fibromyalgia is going to make this one of the most challenging times in my life.  My pain is different, my energy is different, my body is different…oh yeah…and I also have an 8 month old son,a marriage, a full time job and life to lead.

I grieved for the “old me” when I was diagnosed with fibro.

I am grieving once again with the psoriatic.

Acceptance will come, but as I know from before that its going to take some time.  Now is the time for me to lean on family, friends and my stubbornness to get through.

 

 

  • Dave Matthews said at his Radio City show: “This is a song about where you’re about to trip and fall and smash your face but everything slows down to the point where you comprehend you’re gonna get hurt but it’s not enough time to do anything about it. And this song is about how not to forget about counting your blessings.”

“So Damn Lucky”

Everything’s different

My head in the clouds

I hit this corner
With my foot on the gas
I started sliding, I lose it
Everything’s different just like that

Oh my God, wait and see
What will soon become of me?
Frozen heart
Screaming wheels
Does that screaming come from me?
So damn lucky, when went on ahead
You say, you say
I see you later
I heard what you said a few minutes later
I’m sliding
Everything’s different, again

Oh my God, wait and see
What will soon become of me?
This frozen heart
Screaming wheels
But does that screaming come from me?
I’m dizzy from all this spinning
Now I’m thinking that you did all you could
When you said my love
Take it slowly
Ok, is what I said
Oh my God, wait and see
What will soon become of me?
Frozen heart
Screaming wheels
But does that screaming come from me?
Take me back, just before I was spinning
Take me back, just before I got dizzy
Take me back, amazing what a minute can do
Just like you
So, so, so, so, up, around, around, around
Amazing what a minute can do
Around, Around, Around
Ok….

You’re “Big” Again!…You ran a 5K!…You May Not Have Fibro?

There are only so many emotions one person can handle in a weekend….

 

Friday Morning:  Baby A had his six month doctor apt.  SIX MONTHS! He promised me a month ago he would stop growing and stay my sweet, snuggly baby forever.  Promise. Broken.  He is now crawling…fast…after each dog, the cat, each electrical cord, every speck of dust on the floor, my feet, the chair…I thought the newborn part of having a baby was exhausting…huh…I was a fool. 

Emotions, Emotions…

Friday Afternoon:  Leave work a little early and get ready for my Rheumatologist appointment (almost two years overdue).  I ran into an old co-worker who felt the need to tell me I was “big again.” 

Emotions, Emotions, Emotions…..

Never have I ever wanted to punch an old man as badly as I did right then! It was one of those moments when you wish you had a quick, witty comeback that stings the other person, but is SO witty you just come across as sassy instead of a bitchy crazy person. 

No witty comeback here, instead I chose to first: call my husband who can always make me feel beautiful again and who also pointed out that some people only remember me as super fat and super skinny…no one seems to remember the middle…and there is/was nothing wrong with the middle.  Second:  I texted my co-worker who is always good for a quick (normally bad) joke and a few encouraging words.  She didn’t let me down and flooded my texts with jokes so bad you can’t help but laugh at them.

“Why does Peter Pan fly?…

Because he neverlands”

“Yo mama so skinny I slapped her and got a paper cut.”

“Yo mama so skinny she has to wear a belt with spandex.”

It was a reminder to feel blessed for the people I have in my life right NOW.

Emotions, Emotions…on to my Rheumatologist with a renewed smile on my face.

I went through the usual routine.  Temperature, weight (which was a risky request for that nurse after my previous encounter of the day), rate my pain level, etc.  Then I mentioned my concerns…correction…my many concerns.  I had suspected there was something “different.”  Apparently the doctor had the same suspicion.  After him asking me a million questions, he said my symptoms were no longer coinciding with my fibromyalgia diagnosis, and that I was showing signs of having an autoimmune disease.  I was told I will probably end up on long term medication.  I was told I could more kids if I wanted too, but I would be considered high risk.  I was told if it was Lupus, my organ function would need to be closely monitored.  It was a lot of information.  After my appointment I took my 9 pages of blood test orders to the hospital, confused the lab techs who asked me if my doctor wanted me to keep ANY blood in my body as they took 8 tubes, and that’s where my Friday ended. 

Emotions, Emotions…

I am waiting on blood tests to determine if I have lupus.  If that comes back clear, then he said he would treat me for psoriatic arthritis. 

To be honest, I’m not sure if I’m struggling more with a new diagnosis or the fact that fibromyalgia may not be what I’m fighting anymore.  Was I misdiagnosed from the beginning?  Did pregnancy just change things all together?  Will my symptoms suddenly fall back in line with fibromyalgia later on?  I think only time will tell on a lot of my confusion. 

I feel like I’m starting over like when I was diagnosed with fibromyalgia.  I hate the waiting game of finding out exactly what I have.  I’m cautious about researching the wrong thing. I hate not knowing, especially now that I feel “nameless” again…now that fibro may not be in the picture.

I’ve educated,  I’ve spoken up, I’ve researched, I’ve been researched, and I’ve been fighting fibro since 2008…have I been fighting the wrong thing? 

I’m not sure where my challenges start from here, but I plan to take the same approach with any autoimmune disease that I did with fibo…educated myself and live my life the fullest capacity I can. 

Emotions, Emotions…future Emotions…

On to Saturday….Yep that’s right…that was just Friday…

 

TIND24_01_00730_L TIND24_03_02454_L

 

I can finally cross something off my bucket list!  I completed my first 5K!  I did the color run here in town and had a blast.  To be perfectly honest, weeks leading up to this race I was dreading it.  I was actually mad at myself for signing up.  I started to train and then lost focus.  The weather has been beautiful and then THIS Saturday called for a high of 93 degrees and muggy. 

It was going to be miserable.

I was going to be too hot.

I was going to be slow.

I was going to have to walk the whole damn thing because I didn’t get up and train.

And then late Friday night after my emotional rollercoaster I just said “screw it.”

I ran what I could (which was more than I thought I could do) and walked when I needed to.  I laughed a lot and had a great time with my husband.  It was a fun day and a great stress reliever.  I’m so glad we did it and we’re already planning our next run.

Sunday:

Was spent cleaning, grocery shopping, napping and playing with Baby A.  Boring, non-eventful, and quiet…thank goodness!

What I’ve learned this week…

I started my new job this week.  So far so good!  I crammed enough learning into five days to send my fibro fog into overdrive.  By yesterday, my husband I went grocery shopping and I caught myself talking backwards.  Hey, at least I saved that for the people at Wal-Mart (along with a very confused hubby) and not the clients at the gym.  I can hear myself now “Are signed up you today Pilates?” 

Going from a nursing home to a gym is quite a switch and I’ve learned a few new things this week:

-People LOVE their early morning workouts.  At 6 a.m. on the dot, clients come in ready to work.  These people are my hero’s.  I am NOT an early morning exerciser.  I think a lot of it is because my fibro handles night work-outs much better, but truth be told, I’m not very pleasant in the morning.  I’m probably putting that lightly.

-While my Zumba® Gold chair classes are starting off slow, I had one of the best experiences while teaching this type of class this week.  I cooled down to “Feeling Good” by Michael Buble’.  http://search.yahoo.com/r/_ylt=A0oG7iWDSV9QNFkANxJXNyoA/SIG=120somkru/EXP=1348450819/**http%3a//www.youtube.com/watch%3fv=Edwsf-8F3sI  You have to click this link to this song to truly appreciate the “sultry” mood of the music. An adorable woman who attended my class LOVES this song and started singing along.  Before I know it, she’s yelling “Take it off, Take it off!”  It was a good thing this song was my cool down because I was laughing so hard I probably couldn’t have composed myself for any other songs!  Experiences like these are why I LOVE teaching Zumba®!

– People make very interesting noises while they’re working out.  Nuff said.

– I lost 3 ½ pounds this week alone!  Crazy what happens when you don’t sit behind a desk for over 8 hours a day.

– Starting a new job the same week the weather switches from 70 to 39 degrees was ridiculous!  I had fully prepared myself for a “stress from starting a new job, new schedule, oh my God…CHANGE” flare, but I was unpleasantly surprised by a “new weather” flare.  Here comes fall!

– My bosses are Filipino.  I need language lessons.  Can you imagine Fibro-fog mixed with a brand new language!  I have enough trouble with English most days!

– Our gym has partnered with the bariatric center who helped me with my diet during my weight loss.  A much needed “follow my healthy diet” has happened this week.  And if anyone out there has followed a high-protein diet, you feel my pain here.  My increase of protein has also come with an increase of gas.  Aren’t I sexy??  This partnership let me in on one a client’s start of her weight loss journey.  She lost 7 ½ pounds her first week starting with the diet and exercise program.  Seeing her do this was really amazing!

– This change has been good for my mindset.  It was time and I’m happy to make some changes in my life!

We’ll see what next week brings!

When we are no longer able to change a situation, we are challenged to change ourselves. ~Victor Frankl

I may be putting my foot in my mouth by saying I think I “might” finally be pushing through the “grieving” process of losing my “old self” to Fibromyalgia.  I am almost three years into my diagnosis and I never imagined it would be such a long process.  I feel I’ve taken my final steps these past few weeks to enter into the last and final stage of the grieving process.  Some say there are five steps to the grieving process, some say there are seven, in my honest opinion there are probably more around the range of one hundred and two steps with someone with chronic pain, but for now, I’ll stick to the seven to see how far I’ve come:

 

1.  SHOCK & DENIAL-
For me (and probably a lot of Fibro patients) the “shock” factor wasn’t really there when I was diagnosed.  Doctors put patients through such a long mess of tests and procedures before finally reaching the fibromyalgia diagnosis, there isn’t a huge surprise that something is “actually wrong.” 

The denial, however, was definitely there.  I wasn’t in denial about having a “pain condition.”  The “Chronic” part of the condition definitely did not kick in for some time.  The thought that this was something that could last “forever” was something I refused to even think about.  As the symptoms progressed, the reality of that hit me like a ton of brick…and led me into the next stage:


2. PAIN & GUILT-
This is where I started to realize the I wasn’t the same person I used to be, and I had guilt for not taking better advantage of how my body and mind used to be.  How could I let myself get so fat and be so lazy with a perfectly able body??  Why wasn’t I more active when it wasn’t so hard to get up and move without pain and extra fatigue. I should have ridden more roller coasters when I could.  I could have slept in a little longer just because I actually “could” sleep.  The list goes on and on…and as expected, the guilt and the regret eventually lead to…

3. ANGER & BARGAINING-
Why me? Why me? Angry outbursts at my friends, my family, the cashier at Wal-Mart…whoever got into the path of the Fibro monster.

I want to add here that for me, a lot of this phase was directed at God.  I was angry, feeling I was being punished for something I had done wrong. And so I bargained with Him.  If I stop doing this, if I live this way, blah blah blah, would He heal me?  When He didn’t, I just became more and more angry.  This stage lasted a long time for me.  I’ve just now accepted why God has given me Fibro, and as my life as continued and changed so much because of it, his reasons become more and more clear. I trust Him. 

4. “DEPRESSION”, REFLECTION, LONELINESS-
This is the stage where you really learn who your true supporters are.  I know I’m not alone here by saying that when fibro came, friends slowly started to disappear.  Some people can’t handle the change, some can’t handle the depression, and in all honestly, some just aren’t as good of friends as you thought they were. 

A dear friend told me awhile back that it was time to do a “clean sweep,” so to speak, of who I had surrounding me in my life at that time.  Were they helping or supporting?  Could they accept the person I am now and let go of the person I used to be? This isn’t an easy thing to do, but after following her advice the loneliness has slowly disappeared because I never question the intent or distrust the people I have surrounding me.  Are there as many of them?  Nope.  Does it matter?  Nope.

5. THE UPWARD TURN-
This turn did not come until I stopped being afraid to take control of my life.  I’d had enough and it was time to stop rejecting this Fibro and learn to live with it.  Which leads us to:

6. RECONSTRUCTION & WORKING THROUGH-
Reconstruction is not a strong enough word.  Totally re-organizing every aspect of your life seems more accurate.  From the time you get up in the morning, what you eat, finding a realistic exercise schedule, learning how to deal with flares, finding tricks to help with fibro fog, etc.

I have done all of those things, but there was one aspect of my daily living that was due for reconstruction…my job.

This is my last week as the Business Office Manager for the nursing home I’ve worked at for the last four years.  The job came before the fibro and as I changed with the condition, my desire and feeling of a real “need” for a fresh start became over-whelming. 

I start Monday as Gym Manager for the gym where I teach Zumba.  I’m excited to have a fresh start, doing something new, and be surrounded by people who already know and support me, know my fibro, and at a place where I enjoy spending my time. 

7. ACCEPTANCE & HOPE-
I may be a foggy, tired, emotional mess at times, but I am what I am.  When I accepted my new job my new boss told me “Just be yourself” and that’s what I’m intending to do. I’m still new to this phase and may have some setbacks, but I’m trying to stay as positive as possible in letting my “old self” go.   

I’m Jennifer and I have Fibromyalgia.

“The List…”

This is…BY FAR…the best list of Fibromyalgia symptoms I have ever found.  Yes, the Google addict is at it again.

 This is comes from http://abarnabas.tripod.com/indexfibrosymptoms.html .  The website states that this list comes from a college project.  Let me just say, I am impressed.  The list is long, and you know what?  It should be! So many of these symptoms are left off of the usual lists you’ll find, even those lists made by medical professionals.

PAIN – diffuse musculoskeletal pain and fatigue. The syndrome is defined by the presence of musculoskeletal tender points on physical examination. Pain is often described as aching, burning, throbbing, gnawing, shooting &/or tingling. It can be localized, generalized, can feel like muscle spasms and can be scattered throughout the body. It may be migratory, with pain presenting in one or more areas on one day and other areas on another day. Pain is often experienced very quickly after any repetitive movement – even something as simple as holding arms up to brush or comb hair etc.

(I’m so glad they mentioned repetitive movement.  This is why I, personally, can’t lift weights.  Sometimes repetitive movements with things like scrubbing while cleaning can also send me into a flare.)

Numerous vague unspecified symptoms that wax and wane and cause fibro sufferers to “just never feel good”.  

(Absolutely!  Always feeling kind of “sick,” or in my case, constantly feeling like I have a fever.  This had lead me to multiple wasted co-pays made to doctors thinking I was sick when I actually wasn’t.)

Due to the lack of Stage 4 sleep, muscle repair does not occur properly and therefore muscles take longer to heal and regenerate after micro injuries or trauma, as is experienced by everyone in day to day life. Micro trauma during exercise is not repaired in FMS patients in the same manner as it is in normal people – thus the muscle stiffness causes much more distress in fibromyalgics or FMSers and takes longer to subside, therefore exercise is not refreshing but continuously causes pain making patients reluctant to engage in an exercise routine.

(I wouldn’t say it’s not refreshing, you have to continue to try exercise programs that finally bring that refreshing feeling, but it does come with giving yourself time to recover.)

Fibromyalgics have 3 times the amount of Substance P in their bodies than do normal people. Substance P is the vehicle that carries pain stimuli to the brain. The brain may also interpret the pain improperly and respond inappropriately. What might be experienced as a “tickle”, itch or annoyance normally – is often experienced as pain in those who suffer with FMS. There are often more pain receptors in FMSers, therefore pain is magnified.

(So…what does pain feel like to “normal” people??  I wonder that all the time!)

Bilateral Pain in various points in areas throughout the body. There are 18 TPR’s – Diagnosis of FMS is made if pressure on 11 of these 18 points causes pain. Areas throughout the body may feel “bruised” when touched. The tender point is considered to be positive if an approximate force of 4 kg. of pressure causes pain when applied to the specified points. Widespread pain must have been present for at least 3 months with the associated tenderpoint pain in order for Fibromyalgia to be diagnosed.

(This takes FOREVER to get diagnosed, and usually people wait much longer than three months before they are pushed and pinched in these tender points by a doctor. If you’ve ever had your sinuses pushed on by a doctor during a really bad sinus infection, take that pain times ten, only they’re pushing on places on your body from head to toe.  After a Doctor’s appointment where this happens, it feels like you’ve been hit by a truck.)

FMS patients may bruise more easily than others and some may experience excessive bruising.

(Thank you, thank you, thank you for mentioning this!  I bruise so easy!)

Temporomandibular Joint Disorder: in many FM patients, problems are encountered because of the abnormal tone in muscles around the joint, not because of abnormalities in the joint itself. (Pain in the face and jaw.)

Grinding of teeth at night.

Clenching of jaw at night.

(These three have all combined for me in the last few weeks.  My teeth are KILLING me.  I questioned going to the dentist, but wasted co-pay…the last time I mentioned pain at the dentist, they found nothing really wrong.  My teeth have hurt so badly, then my jaw hurts, and it’s just plain miserable.  This usually passes after awhile, but it takes awhile)

Headaches: tension &/migraine. Visual Migraines may also be experienced. (Search Visual or Ocular Migraines for more information)

(usually the reason behind my morning Aleve.  I wake up almost every morning with a headache that feels like a hangover)

Recurrent sore throat.

(again…wasted co-pays)

Chest Pain: Non-cardiac pain that may simulate cardiac disorder. This may be Costochondritis which is pain in the sternum or breastbone where the ribs attach. (Search Costochondritis for more information.)

(I wrote a blog about this.  This is not only painful, but scary.)

Heart murmur: may be Mitral Valve Prolapse. (MVP occurs in up to 75% of fibromyalgics. Search Mitral Valve Prolapse + Fibromyalgia for more information.)

(hmm…I get heart flutters when I’m really tired)

Heart palpitations.

Heartburn and digestive problems.                      

(Heartburn is an understatement.  I might as well put a lit match on my chest when this comes up, I think the burn from the match would be less painful)

Esophageal dysmotility or reflux.

(self explanatory)

Back Pain: usually low back pain – may be exacerbated by muscle spasms in this area. A pillow placed under the thighs to tilt the pelvis while in bed may help, as it flattens the low back against the mattress. Pillow should not be under the knees as this might contribute to causing blood clots.

(hehe…hear that Hubby?? The argument still continues about having my extra pillow between us each night.)

Sacro-iliac instability and pain.

Joint Hypermobility and Laxity: lax ligaments or what is commonly referred to as being “double-jointed”. People who have this condition often ache and are more susceptible to osteoarthritis later in life. Studies suggest that joint hypermobility and fibromyalgia are associated and that the hypermobility can play a role in the pathogenesis or development of pain in fibro.(For more information search Joint Hypermobility + Fibromyalgia)

(I have double jointed elbows and toes.  “Monkey toes” as they’ve been nick-named.   Had no idea it could have an impact on my Fibro.)

Arm and Shoulder pain: Often burning type of pain – often between the shoulder blades. May go across shoulders and down arms. Neck may also be sore &/or stiff. Arms may ache or pain may be severe in them. One side may be more painful than the other. A small pillow placed under the arm to elevate it slightly when lying down is often helpful, as arms tend to drop down on the bed and pull on the neck and shoulders. When riding in a car, it is often helpful to place a pillow over your knees and rest your arms on it. This helps elevate the arms and shoulders and can alleviate the “drag” one them and stop arms from going numb if this is a problem.

(*ahem* again…they’re suggesting an extra pillow.  My shoulders and neck are where I carry almost all of my “regular” pain.)

Postural Changes: shoulders hunched forward or rounded, head thrust forward with neck kinked forward, chest sunken, low back pushed forward causing abdomen to protrude, knees locked, muscles in back of thighs flexed – all a mechanism to find a comfortable position.

(This is terrible for people like me who work on a computer all day.)

Painful lymph nodes: under the arms and in the neck.

(Hmm..interesting!)

Carpal tunnel syndrome: numbness, tingling and pain in wrists, hands and/or fingers. Pain in hands makes writing, typing, wringing out dish cloth etc difficult. Pain when plunging hands into cold water. (also pain maybe experienced on entering the water if swimming in cold water).

(Again, terrible people constantly on computers.  I also totally agree with the cold water.  It’s like being burned in reverse.)

Paresthesia: Numbness or tingling (non-dermatomal) Numbness in arms and legs.           

(This is also a little scary.  I pushed myself too hard working out the other night and lost all feeling in my wrists.)

Raynaud’s – like symptoms – numbness and tingling in the extremities especially in fingers, exacerbated by the cold.

Many fibromyalgics feel cold even when it is not particularly cold inside or out. Often hands & feet are very cold. Sometimes the sensation of cold seems to cause pain as well as giving the sensation of cold. A warm shower will usually help to alleviate this sensation whereas turning up the heat in the house does not.

(A total problem right now at work, as my office mates LOVE air conditioning.  I keep my space heater going, even through the summer, as well as keeping all my windows open just to try to stay warm.  It makes me super grumpy and impatient because I just can’t get people to understand cold is not just “annoying” but very painful.)

Tennis Elbow: Pain in elbow and forearm.

(I do ok in these areas.)

Dry, itchy, blotchy skin &/or skin rashes. Especially on the face by ears and jaws and on forehead.

(My legs and hands are my problem, especially in the winter. It gets really ugly by the end of the season.  I’ve yet to find a solution to this problem, as I seemed to have developed a resistance to steroid creams to help it.)

Ridges: may develop in finger nails and toe nails. Nails may split. Nails may break off easily. If they do grow they may curve or curl under.

(checking my fingers and toes…they look ok to me!)

Restless Leg Syndrome: Aching in legs especially at night causes legs to be moved constantly in an attempt to ease the pain or aching.

(I go through phases where this is an issue, thank God it’s not ALL the time for me, it’s not only annoying to the person who has it, but to anyone else who shares a bed with that person.)

Weak knees and ankles. Cramps in legs.

(I have to constantly change tennis shoes for Zumba to prevent this.  It’s an expensive problem.)

Foot Pain: Plantar arch or heel pain, may be plantar fasciitis or just “fibro feet”. Orthopedic shoes and orthotics may help.

(see above)

Muscle and joint aches.

(duh)

Severe muscle weakness.

(yep)

Muscle spasms: may feel like tight knots or charlie horse or lumps. Muscles contract but do not release properly. Muscles apparently may contract without receiving stimulus from the brain.

(Ever get a “runner’s cramp”- Try getting them is really weird places like the bottom of your foot, or your neck.)

Twitching: can be muscular – may experience eye twitch or a facial twitch.

(My face twitches during Pilates.  I can only hope my instructor doesn’t think I’m winking at him.)

Burning sensations in muscles throughout the body.

(I’m not really one for this problem, but many other fibro people mention it.)

Nausea: may be caused by overload of pain stimuli bombarding the brain – nausea may also be experienced when moving from a horizontal to a vertical position.

(Welcome to my mornings)

Recurrent flu-like illness with muscle pain and aching.

(ahhh…I’m now realizing…oh..SO many co-pays wasted!)

Weight change: – usually gain – a feeling of swelling or puffiness might be experienced. May experience retention of fluid for a few days and then return to “normal”. May “feel” swollen even if inflammation and swelling are not actually present. Weight gain may also be due to various medications used to treat fibro.

(Thank goodness for Zumba)

Hair loss: hair may come out in great “gobs” when combed or brushed. May notice hair coming out when it is being washed as well.

(This was a problem for me a few months ago.  Seems to be doing better.)

Sleep disturbance/non restorative sleep: may be described as not being able to fall asleep, not being able to stay asleep or more common, “I feel like I haven’t slept at all”. May awaken frequently and be unable to return to sleep for some time. May wake up “full” of pain and feel “more tired” than on going to bed.

(I can’t remember the last time I didn’t wake up feeling completely exhausted)

There is a disturbance in the sleep pattern and fibromyalgics are not able to enter into stage 4 sleep, thus they awaken frequently through the night when they reach Stage 4. One may also feel that they are awake and asleep. In essence what happens is that there is brain wave activity of sleep going on in the brain and at the same time there is brain wave energy of being awake going on – almost like the sleep patterns and awake patterns are playing in the brain at the same time. Restful sleep is never achieved. Thus there follows deep aching discomfort throughout the body and the feeling of being exhausted. The shoulders, neck and low back are often the most painful.

(This is one of the worst feelings in the world.  I wake-up (?) often wondering if I’m actually awake or asleep.  The only thing I know for sure is I just feel really tired and I know I’m not resting properly.)

Frequent, unusual nightmares or being unable to dream – “black” heavy sleep may be experienced if medication is taken to aid staying asleep.

(Screaming in my sleep, or when I do dream, it’s so incredibly realistic it puts me back into that “Am I awake or sleeping” feeling.

Night sweats: wake up drenched in perspiration, then become very cold and maybe even start to shiver.

(All the time)

Intolerance to cold: muscles contract in response to exposure to cold – cold weather, cold drafts, ice packs etc. Sometimes referred to as muscle jelling as in jello – jello is fluid and liquid when warm and jells when chilled. Extreme sensitivity to seasonal changes, climatic changes – rain and impending storms. Most Fibro patients find that their muscles respond to the application of warmth but that application of ice packs or cold intensifies pain.

(I actually just read where someone recommended Ice packs to put on Tender points.  Do they have ANY idea how much this would hurt?)

Body temperature fluctuations – hot one minute and cold the next. Perhaps inner “controls” (thermoregulatory system) are out of whack.

(Again…all the time.)

Fatigue – can be described as feeling tired to being extremely exhausted after minimal physical exertion. Sometimes a short nap in the afternoon may help relieve the feeling of fatigue, yet some people require frequent rest periods to get them through the day. Sometimes the fatigue can come on suddenly for no apparent reason and can be very debilitating. Short periods of exertion can require long periods of rest to recuperate. Can be severe and have a sudden onset even with minimal physical exertion. May experience sudden debilitating fatigue that makes it necessary to immediately stop whatever one is doing and go and rest. May be experience as a sheet of fatigue descending over one. It is so debilitating that patients are often left wondering how they can carry on – “I’m just too tired to keep on living”

(That sudden onset is also awful to deal with.  I just had an instance where my husband and I went out to breakfast and we drove home with me in tears because I was just so damn tired.  Miserably tired.  I took a three and a half hour nap for the rest of the day.  I get so frustrated with this symptom, feeling like I’ve lost whole days of my life to sleeping.)

Lightheadedness

(Again…welcome to my morning)

Vertigo

(No more roller coasters or rides for me!  I would walk sideways for a week!)

Disequilibrium – impaired co-ordination: misjudge distances – bang into door frames, walk into furniture, walls etc.

Cognitive function problems: such as attention deficit disorder, calculation difficulties, memory disturbance, spatial disorientation, difficulty with concentration and short-term memory. These things are commonly referred to by FMSers as “fibrofog”.

(My husband just point to all of these and said “Yep to that one, Yep to that one…”  Guess that answers that one…humpf)

Neurogenic inflammation: rashes and hives, inflammatory sensation, with rashes that may be severe, severe itching with inflammation – initiated by nerves.

(Hives.  Sometimes right after Zumba and I’m not sure why.)

Alteration of taste, smell, hearing. Some odors may make one nauseous.

(The smell of our bathroom spray at work just about sends me running out in tears.  I would rather them just not use it…yes, that’s gross, but so is green apple scented spray…yuck..I’ve got to stop thinking about it, it’s making me nauseous.)

Sensitivity amplification: may be more sensitive to smells, sound, odors, lights, pressure and temperature fluctuations, vibrations and noise etc. – the buzzing from fluorescent lights, hum of computer, buzz of overhead hydro lines may become almost unbearable to an FMSer at times. FMS hyper-sensitizes nerve endings.

(The sound of the copier at work sometimes give me that “nails on a chalk board” feeling.  Not good for an office manager.)

May develop food intolerances, allergies and chemical sensitivities.

(I’m all of a sudden having issues with cranberries…weird.)

Changes in visual acuity: impaired function of smooth muscles used for focus as well as skeletal muscles for tracking. May experience blurred vision &/or double vision. Some people require two or three different eye glass prescriptions as their needs change with the Fibro symptoms. May experience Visual or Ocular Migraines.

(I have trouble on highways.  It gives me the feeling that the road is moving side to side.  I actually thought something was really wrong with my car for awhile.)

Exaggerated nystagmus: involuntary rapid movement of the eyeball.

(Not that I know of)

Intolerance of bright lights/sunlight.

(*Bright light, Bright light!*  Did anyone catch that reference??)

Dry eyes and mouth: dry mouth can cause dental problems – dry eyes may cause inability to wear contact lens, may cause other visual problems, may require eye drops to keep eyes moist and free from infection. Eyes may be very dry at times and water at other times.

(Dental problems!  Oh no, now I’m worried about my teeth again!)

Hearing Loss: low frequency, sensorineural hearing loss.

(I’m blaming my hearing loss on the speakers in Zumba, not my Fibro.  This one is my own fault.)

Decreased painful sound threshold. Sometimes normal everyday noises become very irritating. May not tolerate radio or television well.

(Fire alarms-ouch.)

Ringing in the ears – ringing and sounds like the rolling ocean or whispers may be experienced.

(I’m sorry, I can’t hear you over the Latin music.)

Allergies: Severe nasal and other allergies and patients may also have a deep sinus infection.

(And they come unexpectedly and end with a night in the E.R. having an allergic reaction to a medication you’ve taken multiple times.)

Environmental sensitivities may develop.            

(Fresh cut grass, some people love it.  It makes me feel the same way as the bathroom spray.)

Enhancement of medication side effects.

(see above)

Intolerance of medications that were previously tolerated.

(Ha!  See above again!)

Intolerance of alcohol.

(teehee…I’m a lightweight!)

Intolerance of caffeine.

(But I love it so…)

Intolerance of processed white sugar and most artificial sweeteners.

(I’ve heard this causes headaches.  I’ve cut it out since being diagnosed just for good measure.)

Premenstrual Syndrome: swelling, tenderness and lumps in breasts are often experienced with PMS, painful periods as well as mood swings, exaggerated emotional responses etc. etc. as common in PMS.

(EXAGGERATED EMOTIONAL RESPONSES!!!! SHUT UP!!!….)

Fibrocystic Breast Disease: may be experienced by FMSers especially prior to period. Breasts may become very swollen and sore and be full of cysts or lumps that disappear after period.

(yep)

Frequent vaginal yeast infections.

(*sigh*…yep)

Vulvar vestibulitis or vulvodynia.

(I think I’m ok here.)

Interstitial cystitis.

(yep)

Irritable Bladder/Frequent Urination: might be uncomfortable or painful. Also bladders spasms may feel like a bladder infection.

(lord yes)

Foul or strong smelling urine: May smell like green hay. May be dark in colour.

(Maybe I’m just a city girl but, first off…that’s kinda gross, and second…what the heck does green hay smell like?? Do I want to know?)

Irritable Bowel Syndrome: alternate between constipation and diarrhea. Frequent abdominal pain, gas and nausea.

(awful, horrible, embarrassing, painful…I could go on…but my stomach is currently rejecting my McDonald’s dinner choice, so yes, some of this is my own fault.)

Depression: may be reactive or clinical. Often pain and feeling ill all of the time causes the depression. FMSers are depressed because they hurt. They do not hurt because they are depressed.

(self explanatory)

Anxiety: may include panic attacks.

(Hence the recent and WELL SPENT co-pays to the therapist)

Emotional lability or mood swings. May be tearful at times because life seems overwhelming.

(yep)

Irritability probably due to pain and inability to do the things that you need to do and want to do.

(see above at my frustration with my co-workers and the air conditioning.)

Personality changes: usually a worsening of a previous tendency. People who have FMS sometimes have a hard time accepting their limitations and the loss of the person they “used to be” – they may actually go into the mourning process. Because FMS is an “invisible” sort of illness – and patients often see many Doctors before being properly diagnosed, they often begin to doubt themselves.

(Terrible personal conflicts go on here.)

Fibromyalgics desperately need support and understanding from those closest to them but they often feel alienated because of their illness and inability to participate fully in many common activities of daily living. Many are unable to continue working at the jobs they love and thus lose part of the identity that their job may give them. They begin to lose their sense of independence and productivity and their sense of value.

(Read this closely)

Anger and resentment towards lack of understanding may alter FMSers personality drastically and cause even further alienation from family and friends. Along with this sense of helplessness and worthlessness that may develop, they may begin to feel guilty for not being able to be the person that others need or expect them to be. They may become extremely depressed and begin to lose interest in life altogether.

(Read this closer)

Fibromyalgia does not usually respond to anti-inflammatory medications. Initially there may be a positive effect but often this initial response subsides. Low doses of anti-depressants are often administered in an attempt to modify sleep patterns and serotonin uptake. Analgesics likewise often become ineffective once the body has become accustomed to them. Doctors are sometimes reluctant to prescribe narcotic analgesics due to the possibility of addiction. Various herbal remedies are found to have some positive effects by some fibromyalgics as are various vitamin and mineral supplement preparations. There are special herbal combinations specifically for FMS.

(Herbal combinations?  Hmmm…something to look into. My husband would like to add this “may or may not” mean pot.)

Exercise Programs are effective for some FMSers while they exacerbates the pain for others. Swimming is helpful for some people. Warm Baths are sometimes comforting especially if sea salt or epsom salts are added to the water. Heating Pads are helpful – either regular pads or moist heat. Infra Red Pads are also helpful for some patients. Analgesic rubs or liniments also bring some temporary relief. Massage, Reflexology and Chiropractic treatments are effective for some FMSers but tend to be aggravating to others.

(Find what works for you and stick with it!)

It is very important for those who suffer from this syndrome to remember that THEY have fibromyalgia and that fibromyalgia DOES NOT HAVE them!

(Read this the closest!)

 

 

 

“I love being married. It’s so great to find that one special person you want to annoy for the rest of your life.”

It’s been a busy few weeks.  Worked a hellish half week, worked out, took a mini vacation with my Mom to Indianapolis for a late mother’s day gift, and my husband finally returned Friday from a two week work trip.

The last few weeks were, well…different… without him at home.  I’m not going to act surprised like I never realized how much he helped around the house until he left.  I knew darn well how much he did and became very paranoid after he left.  Could I do it all??  Could I work, keep up with my workouts, take care of the dogs, take care of the house, the chores, and all the little things AND not have my fibro attack me full force?

My answer to this now that the trip is all said and done is I “kind of” survived. 

My husband was the main coffee maker each morning (mostly because he tends to be an hour or two before me.)  I have discovered I am absolutely incapable of pouring coffee grounds into the coffee maker without spilling them all over the counter and kitchen floor.  I’m pretty sure my dogs had a good caffeine buzz going for the last few weeks since they are always right under your feet in the kitchen looking for clumsy food droppings!

While I may like to complain that I can’t understand how two people create so much laundry, I am now thinking it’s a bigger pain the rear doing laundry for one.  Yes…I didn’t have to do it as often, but the gross truth-be-told problem?  My Zumba clothes (soaked from class) sat in a pile in the hamper for too long and pulling out wet clothes three days later is…as I’m sure you’re already thinking…disgusting!

Sleeping is enough of a challenge with Fibro, but, for me, not having my routine at bed time or my husband next to me only made it worse.  The last two weeks brought the worst sleep I have had in years.  I tried to “make the best” of it with the “I have the bed all to myself so I’m going to stretch out in all directions” theory, but it was a huge failure.  The first night I think I stretched too far and woke up with a terrible stiff neck. The next multiple nights I saw the clock hit two or three, and by the night before my trip with my mom, I just gave up and slept on the couch.

I STILL can’t cook.  I’m not sure why my husbands leaving made me think that I would magically pick up the skill out of necessity or something but I was dead wrong.  I made a turkey burger the second night, but had to ask my husband if the colors coming out of the juice were safe to eat.  He said it was fine, but my stomach had already turned from the thought I may have poisoned myself and I couldn’t finish it.  This led to a few weeks of eating really badly.  Not junk food badly, just had no appetite.  I have to thank my mom for getting my appetite back when we went to Indy and I tried to eat my weight in brisket. Y.um.m.y.

I survived the yard work ok, although I’m convinced our weed eater only has eyes for my husband since it never wanted to charge.  I mowed and pulled weeds out of the garden, but the rest had to wait until he came back.  To be honest, I think he was glad to do it.  He actually really enjoys working in yard, but it’s a shame Indiana had 90 degree weather waiting on him when he came back.  I have to toot my own horn here and say “Thank goodness” I am not heavy anymore.  I couldn’t help in the yard when I was heavy without getting heat sick and am so happy I can do these things now…and as much as I never thought I would say it, I actually really enjoy it.  I know my husband is happy too, it’s a LOT of work for one person!

By the end of the last week I felt really sick.  I’m sure it wasn’t eating well combined with not sleeping well, and a little bit of fibro mixed in, but I felt horrible.  I had to leave work early Wednesday.  My heart was racing, I felt like I was going to throw up and felt like I was running a fever.  I went home and slept for four hours and started to feel a little more human.  I was miserable.

 

What I thought about most (and with perfect timing with Memorial Day coming tomorrow) is I have no idea how service men and women leave each other for so long.  Although this past few weeks seemed like a lifetime, I feel very fortunate.  I don’t know how those husbands, wives, and families do it.  A tremendous thank you to them for serving our country and being strong enough to go through everything they do for our freedom.  Two weeks was hard, I can’t imagine months, or even years of being away from home.  Thank you all.

I will have to say my trip with my Mom came with perfect timing.  It was the night before my husband came home and a lovely way to pass the time.  I hate being four hours away from her, but I can tell the distance hasn’t prevented so many similarities in our personalities.  We both got lost going to the hotel, we are drawn to similar clothing styles while shopping, and let’s face it…we look so much alike it’s uncanny.  While shopping, I’m pretty sure we completely confused a sales girl.  My mom is probably convinced that she was trying to figure out if we were together, but I’m convinced she was trying to figure out if we were mother and daughter, or sisters.  My mom is one hot lady!

We had a fantastic dinner and got to really talk.  I talked about my Fibro and how the video contest I was recently in impacted me so much. We talked about her life after breast cancer, our husbands, and the excitement we have to find out the sex of the baby that is on the way from my sister.  It was very relaxing.  We ended the night in the hotel hot tub, which I think should be covered by insurance for anyone with Fibro.  I hope my mom and I can travel more in the future, and I promise, when I win the lottery (which my mom lovingly pointed out I have to actually buy tickets first) that we are taking a trip to New York City!!

Today I get a visit from my sister and her family.  I’m excited to see them and my adorable nephew.  I’m so glad the end of this few weeks has been filled with family!

 

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