Sleep? hmmmm...Sounds familiar...

Posted on October 3, 2012 by swansonmjs

Yes, What a surprise ~ Like all Fibromites I suffer from lack of deep restorative sleep.
According, to studies 80% of people with fibromyalgia suffer from sleep apnea. Sleep apnea is a disorder that causes momentary stopping in breathing while sleeping. It can affect some people so badly that they actually cause themselves to wake up
My fatigue finally hit a level that I could not deal with it any more.
I went to the doctor – who sent me to a new Rhuem and scheduled me for a Sleep Test.
I fall asleep right away but waking up too early and can not be able to fall back asleep. I was diagnosed with sleep maintenance insomnia.
As if we have not tried everything they suggest sleep routine changes. Limit noise, lights, keep room temperature cool, if you can’t sleep after 20 minutes get up and do something in another room until you feel you can fall asleep.
I did try all of the above – it works as long as I take plenty of sleeping meds both natural and prescription.
Wikipedia explains a sleep study as the following;
“Polysomnography is used to diagnose, or rule out, many types of sleep disorders including narcolepsy, periodic limb movement disorder (PLMD), REM behavior disorder, parasomnias, and sleep apnea. It is often ordered for patients with complaints of daytime fatigue or sleepiness that may be caused by interrupted sleep. Although it is not directly useful in diagnosing circadian rhythm sleep disorders, it may be used to rule out other sleep disorders. A polysomnogram will typically record a minimum of twelve channels requiring a minimum of 22 wire attachments to the patient. These channels vary in every lab and may be adapted to meet the doctor’s requests. There is a minimum of three channels for the EEG, one or two measure airflow, one or two are for chin muscle tone, one or more for leg movements, two for eye movements (EOG), one or two for heart rate and rhythm, one for oxygen saturation and one each for the belts which measure chest wall movement and upper abdominal wall movement. The movement of the belts is typically measured with piezoelectric sensors or respiratory inductance plethysmography. This movement is equated to effort and produces a low-frequency sinusoidal waveform as the patient inhales and exhales. Because movement is equated to effort, this system of measurement can produce false positives. It is possible, especially during obstructive apneas, for effort to be made without measurable movement.”
Sounds wonderful doesn’t it…
So when I stop typing this I will be eating a dinner (without many liquids), packing pajama’s, toiletries and maybe my pillow then heading to the Hospital. I have to be there before 8:30 (which is my bedtime). They said that they have to have the study started by 11:30.
Okay – once again.. my bedtime is 8:30. Check in; get ready for bed; proceed to be hooked up to all of those wonderful wires, and pop an ambien that has been prescribed for me.
I stopped taking it months ago - stopped working for me.
I hope I will sleep the night away ~ and ~ wait to hear the results.

Sweet Dreams ~ Let’s hope!

Eeny Meeny Miney Mo~Catch a Doctor by the toe

Posted on September 27, 2012 by swansonmjs

I am off to see the Wizard.. the wonderful wizard of FIBRO…

I am on my way in the morning to meet a Doctor. The only Rheumatologist I have seen is when I was diagnosed. I have been my own “pain specialist”. I have been studying everything related to Fibromyalgia every single day for the past 3 years.
Why do I need a “Fibro” doctor?
A few weeks ago, I scared myself. My dizziness and lightheadedness got so bad that I began to black out. In addition, my fog was the worst that I have experienced. After the MRI came back clear I felt lost. I knew it was just more Fibro crap but I need an answer.
I AM SO VERY TIRED ~ so they are sending me to a sleep study. Unless I am drugged – I don’t sleep. Even if I sleep, I am never rested ~ good news I can lay down without pain now (new bed).
I began to prepare for my appointment tomorrow; started writing my story. How long have I had symptoms? What are my diagnosis, medications, treatments, daily symptoms, etc?
I went online researching what to look for when looking for a Fibromyalgia Doctor. They give you these great questions to interview the Doctor to see if he/she will work for you.
How many FM patients have you treated? • Are you familiar with my other conditions? • What medications do you usually prescribe for fibromyalgia? Do you have a problem with prescribing the medications that I am taking? What is your policy on refills?, What do you feel is adequate pain control? • Can you treat depression or must I see a specialist?
• Are you familiar with alternative therapies? How do you feel about _______? Fill in any alternative therapies.
Considering there are not many Rheumatologists in my area willing to take on new patients ~ I really didn’t get to do much choosing. I found out that this Doctor would see me and I took the appt.
She either works or I am back on my own.
Another website listed the techniques to ask about managing your Fibromyalgia.
Medications √
Coping Techniques √
Sleep √
Exercise √
Changes at work √
Diet √
Complementary/Natural Treatments – Massage, Herb, Chiropractor, Acupuncture √
I know that this makes me sound like a know it all. I am not.
I have so much to learn. Every time you think you have it figured out – Fibro throws a twist, adds a new symptom, adjusts to the medications, or hits a flare that nothing you have tried before will make it stop.
I decided awhile back to accept that my life was going to change but that I was going to make the calls. Like any other Coach I needed a good team. I have a GP that prescribes my medications, a chiropractor, an acupuncturist, my water therapy, support groups, and my writing.
I am tired of being the sole person in charge of my medical life. I like to think I am doing it right but I need some validation.
I started to get teary eyed about it. I felt so emotional. Am I really prepared to go through all of this again? What can a new Doctor do for me anyways? Am I just wasting more time and money?
The best advise I read when planning for tomorrow is;

Be realistic. Creating unrealistic standards and goals will set you up for disappointment.

False Misrepresentation

Posted on September 19, 2012 by swansonmjs

A while ago when my parents were visiting one of the Fibromyalgia commercials came on as I was asked “Why I was not on it?”. I have been asked that by others in the past. “What about the medicines advertised on TV?”
I replied NO WAY would I go on ****** - I heard too many bad things about the side effects for those who had been on it.
The people who advertise this product are so smart – the commercials are on at night when we are awake, not sleeping and in pain.. WE ARE WILLING TO TRY ANYTHING.
There are so many things that aggravate me about the Commercials. Aggravate is really a nice way of putting it. I want to throw something at the TV when they come on – I feel like SCREAMING – yet all I do is change the channel.
In the commercials the Fibromite describe Fibromyalgia as;

Being “tender to the touch”. Really?

I would love to describe my pain as “tender to the touch”. Everyone experiences the pain differently. It is a pain that causes you to ache all over. It can range from feeling like overworked muscles, sharp stabbing pains, muscle spasms, or the burning/aching feeling which feels like you have the flu. My “Trigger Points” hurt no matter what treatment I try.
Or how about;

“For several weeks I had this deep, unexplained pain” “I saw my doctor and he prescribed ******”.

Seriously, “several weeks” .. Have any of us been diagnosed that quickly?
It is diagnosed by ruling out conditions with similar symptoms to Fibromyalgia. In my own personal experience these tests took me a lot less time than some. Some Fibromites go through years of tests and non-believers before they receive a diagnosis. It comes down to trigger points, chronic fatigue, tenderness, non-restful sleep and “Fibro Fog“.
For me, First it was for exhaustion, insomnia, depression (SAD) and anxiety(GAD). Then onto a Dentist for TMJ. Chiropractors (DDD. Mild Scoliosis) & Doctors who sent me to Physical Therapist. Eventually, it was blood work and tests to rule out many other conditions. Then finally, a Rheumotolgist and Ta-Day – Fibromyalgia. Still, today I am going to more Doctors to figure out answers to new and exciting symptoms.

“My fibromyalgia muscle pain is real, but I’m not the type of person to just lie down and quit”.

No one wants to just lie down and quit. I admit I have days when I want to hide under my bed covers all day when my body is in such pain and the fog so bad.
It has been my experience that those Fibromites who are either no longer working or able to do their daily tasks their pain, Fog and other symptoms have gotten so far out of control that nothing works any more. Either medications stop working, they experience major side-effects, Insurance won’t pay for it or worse yet – no insurance at all.
These commercials mention pain as the symptom of Fibromyalgia. What about all of the other symptoms and “evil side-kicks” that we are so lucky to have along with the pain?

• Chronic Fatigue Syndrome
• Insomnia, Non-restful sleep
• Stiffness when waking or after staying in one position for too long
• Numbness
• Fibro Fog, Difficulty concentrating and remembering
• IBS, Migraines, TMJ
• Anxiety, Depression
• Sensitivity to lights, smells, and sounds
• Restless leg syndrome and more…

Next Commercial; “I felt just awful with my fibromyalgia before, not able to do every day things, etc.”

Yes, I have days that my hands won’t hold things, days that my balance is so far gone and dizziness makes me nearly black out when moving. The Fibro Fog days are the worst. When you can’t remember … There are so many days that I want to do nothing – I have a supportive Family that help gently push me through it. They know the days that I need to just hide under covers, have a good cry, sleep a few more hours and hit the pool in order to get through it.
On January 17th, 2012: The ad features a female Architect going to work on a very bright sunny day. She is smiling as she is getting ready, moving quickly getting in of her vehicle with ease.
Where is the morning stiffness, the sunglasses, the struggle getting in and out of the car?

What about how these Commercials have the Fibromites look and dress?

Yes, I can look and dress nice ~ but clothes hurt touching my skin. The less and lighter the fabric the better. I need sunglasses outdoors or tinted glasses indoors, I move slow, a lot of Fibromites have weight issues due to the combination of medications and the pain keeping us from exercising.
Yes – I understand they are trying to sell their product but I think the part that bothers me the most is it is as if they have found the Miracle Drug…

Take this product and it “calmed those nerves and how she is back to feeling much better”.

It takes more than one prescription; it takes prescription meds, supplements, healthy eating, good sleep patterns, exercise, support from family and friends and much more.

The ladies in the commercial are able to throw a dinner party, go on a walk, garden and happily go to work.

I can do all of those things too.
Yes, I can throw a heck of a party… and yes, I will go into a painful flare after the party is over. I will be so sore from the walk that my back and legs will hurt for days. I can garden. I need someone to help me get up off the ground and walk me indoors and yes, I can go to work after I have had an hour to get my body moving, taken my medications, had help getting in my car, adjusted my lumbar seating in my vehicle, and have donned my sunglasses.
I started writing this blog to point out how these commericals misrepresent Fibromites.
The commercials are enough of a turn off that if I was ever presented with it as a solution – I really don’t know if I could take it.
I want to be represented accurately. I want them to show us as we are;

• All ages
• Male and Female
• All races
• Struggling to get out of bed(physically and emotionally)
• Getting through the day the best we can and then our bedtime routine to end up awake most of the night in pain and with insomnia.

Maybe those of us who are dealing with this daily should create our own Public Service Announcement.

Fibromyalgia — The Real Story.

*************************************

While writing this blog I found myself not able to stop researching one particular medication and it’s side effects.

I was gathering more facts, hearing from those who have experienced the medication first hand. I think I have my next topic.

Helpful Hints? Really?

Posted on September 10, 2012 by swansonmjs

My Corporate office sends a health letter to the Employee’s each month. In the latest edition it had a sidebar titled Controlling Chronic Pain.
Sitting in my break room at work I began to read.
It started out with the statement that “If pain continues with little or no relief it can affect you physically and emotionally”.
It is funny after reading this part I laughed ~ I don’t know why but I heard my Mom’s voice clearly in my head saying “No Shit Sherlock”!
My voice – No Duh!
I continued reading ~
“Some pointers to keep in mind”…
1. Seek treatment early.
2. Keep a pain journal.
3. Write down questions before you go to the Doctor.
I reacted in my typical response to obvious statements like these .. I sighed heavily and rolled my eyes.
Sure these are good ideas. But they are not earth shattering “new” ideas for those of us having Chronic pain conditions.
Then the last pointer; I had to control myself when reading this one.
“If past treatments have failed, don’t get discouraged.
There are other pain management treatments to try.
Although your pain might not go away completely, you may be able to reduce the pain so its bearable.”
Are they serious? Did they really say “don’t get discouraged”? Sure ~ Easy for the writer to say.
“other pain management treatments?” ~ we know .. We have tried them all.
“reduce the pain so its bearable” ~ How can 24/7 pain at any level be bearable?
I understand that in these sidebars they have a small space to use to write their “helpful hints”.
Personally, here is what I would do with the Sidebar;
Ask a person dealing with Chronic Pain;
What to expect when trying to find what could work for you?
List suggestions on what alternative treatments are available?
What questions should you ask the Doctor?
How do you keep a pain journal?
Most importantly:

What do you do to try and deal with it when you

DO get DISCOURAGED when the PAIN is UNBEARABLE?

I need a new drug

Posted on September 4, 2012 by swansonmjs

The other night I awoke at midnight in pain and found myself unable to fall back to sleep. This is not an uncommon occurrence. However, usually I can reposition, turn on a mystery show, chat with another Fibromite, play Words w/Friends, apply ice or heat and within 1-3 hours fall back to sleep.

As I watched the time get closer to 3 am with no relief from the pain or feeling like I had no chance of getting any sleep. I felt desperation overtaking my body. I had tried all of the past solutions and had even got up and straightened the house.
I opened the hall closet, looked thought “my” box of medications.
Nothing. I looked through the rest of the medicine.
At this point I was looking for anything. I found several bottles of cold medicine. Non-Drowsy! WTH! Why on earth would I buy all “non-drowsy” cold medications?
It began to dawn on me that I was acting like an addict.
I was “in need” of a fix. That fix was sleep. I didn’t care how I got it.
I just knew I needed it and I needed it NOW!
The search continued… I found a pain prescription for my husband at the bottom of the box. I looked it up the side effects and possible drug interactions on the Internet finding nothing that I felt would cause any harm.
I have never taken someone else’s’ meds – until now.
I took one. It did not bring me sleep but it brought me relief from the pain.
I went to my Chiropractor appointment and then work. So very tired.
Once at work, I realized I had forgotten to take my morning meds – I proceeded to take them.. Approximately 1/2 hour later – the yawning would not stop, I was fighting to keep my eyes open. This was not normal. I know I had been up since Mid-night but this was different. It dawned on me – I had taken my bedtime meds.
Sure – Now my bedtime meds wanted to kick in and work for me. I did go home and slept the day away. Of course, then I took my night meds again ~ and back to sleep I went.
My prescription drugs include a Serotonin Modulator, a SSRI, a Tricyclic antidepressant, an Opiate, an Anti-epileptic medication and an Amphetamine.
Once my body gets accustomed to the “drug” I have to go bigger and better or find a “new” drug that will work at least until I get accustomed to it too.
I began to look at this – I am an addict. Reality is that I take “uppers” in the a.m. to wake me up and get me going and my “downers” bedtime meds to get me to sleep.
I find myself heading back to the Doctor this week to find the “new drug” to help with the insomnia.. Until then – Huey Lewis and I will be singing a duet.

Song of the day; Huey Lewis “I need a new drug”

I want a new drug
One that won’t make me sick
One that won’t make me crash my car
Or make me feel three feet thick
I want a new drug
One that won’t hurt my head
One that won’t make my mouth too dry
Or make my eyes too red

I want a new drug
One that does what it should
One that won’t make me feel too bad
One that won’t make me feel too good
I want a new drug
One with no doubt
One that won’t make me talk too much
Or make my face break out

No Title

Posted on August 14, 2012 by swansonmjs

Is this you? (btw; Can’t think of a Title-in a deep fog)

Do you . . .
. . . forget where you leave things you use daily.
. . . forget names of friends, co-workers, acquaintances.
. . . forget mid-conversation completely what you were going to say?
It’s there but it can’t come out.
. . . miss appointments or forget things that you were supposed to do.
. . . have trouble remembering what you’ve just read, or details
of a conversation.
. . . become easily distracted.
If you have not experienced THE FOG - You are blessed. Fibro Fog is to say the least very frustrating. I would never have thought how much panic & stress forgetting something can cause you.
I am constantly stopping as I start to tell a story and ask the person I am conversing with – “Have I told you this yet?”
So, If you have heard these stories ~ I am sorry but there is a plus – I do remember telling them to well… someone anyhow.
I was sitting at my phone. I was going to call my parent’s house. I have never put their home phone on speed dial. I know the number. Well, I thought I knew the number. I sat there staring at the phone. My brain was spinning to find the number. Panic over took. I could feel my head spinning. Emotion took over. I began to cry. I could not no matter how hard I try remember their number.
Another time, I was in the locker room after swimming. I went to my locker to get my clothes. No problem – right? Wrong! I had no idea which locker had my clothes in it. I stood there – fighting the panic – I lost.
Most recently when I was in “THE FOG” ~ I went to McDonald’s to pick up through the drive thru. A short time later on my way home (4 blocks from McDonald’s), started thinking “What was I supposed to do?”, OH, that’s right – McDonald’s. Looked to see if I put it in the back of my car – nope not there. Did I not go? Yep – I went receipt was right there. Food was not. I had gone thru, ordered, paid for and kept on driving. Totally forgot to pick up the food. So back I went.
I told them I was the scatterbrain who forgot their food. I didn’t go into the whole “I’m sorry” “I have a health condition that makes me forget things”.. I am so SICK & TIRED.. of saying “I’m Sorry, I have a health condition that makes me … (Fill in the blank with any of the following) ~ Forget things, Drop Things, Not be able to open things, Tired, Dizzy, Walk Slow, etc.
What causes us to go into “The Fog?”

Sleep deprivation is the leading cause of Fibro Fog.

In addition to sleep deprivation, side effects of medication, depression, Vitamin B12 deficiency, Thyroid problems, Alcohol abuse & Dehydration.

What can we do to …

Get plenty of sleep. Yes – I know that this sounds like the impossible but if you stay on a regular routine – it really can improve your sleep.

Exercise; Walking is a great way to help fight memory loss.

According to the American Academy of Neurology, older adults who walked between 6 & 9 miles per week had more gray matter in their brains nine years after the start the study than people who didn’t walk as much.

Get together with Friends & Family; keeping social contacts will help your memory.

Watch what you eat; Avoid foods high in salt, fat and sugar. Avoid alcohol.

Manage stress. (Good Luck – we only have hmmmm… a very long list of diagnosis that go along with Fibro)

Keep to a routine. Schedules are a Fibromite friends.

Make lists – and lists – and lists. Post it notes are a great help with remembering things. “The palest ink is better than the best memory” - Chinese Proverb

Get rid of distractions. Loud music, people talking at the same time, fluorescent lighting, all create confusion.

Know your circadian clock. Pay bills, grocery shop, and do other tasks that require a high level of concentration when your energy level is highest.

Play games such as; Scrabble, Words with Friends, Sudoku, Crossword and Jigsaw puzzles, try playing the kid game “I’m going on a picnic and I’m going to bring”

Read newspapers, magazines, mysteries – Anything that will challenge your memory.

Today, I was going to come home from work and post this blog. Well, work gave me another story for this entry.
At my work the woman’s- bathroom key is kept on a bulletin board. I looked for it – not there. Checked all around the desk, the cabinet beside it, the floor etc. No where to be found. I wasn’t worried about be going in there and someone else coming in (I am the only Female at work). I was worried about someone locking and shutting the door and then not being able to get in there next. I was walking to the supply closet and put my hand in my pants pocket. Yep – you guessed it – that was where I found the key. Later a co-worker asked me if I found the key. He was with another co-worker and a vendor. I said yes. He asked me where I found it.. I said in my pocket. Of course, the laughter began and the stories.. “I’ve looked for keys, sunglasses etc.
I don’t know about you but I am just plain tired of people telling me that Oh, I have the same problem. I forget to …. or I forget where I put ….

IT IS NOT THE SAME!!!!!

Forgive me but I did not write the below chart and I have no idea from where I copied it. I really thought I had saved the page to give the author credit.
Therefore – I did not write the chart below but please read it. PLEASE – read the differences.
Understand that those of us with Fibro Fog experience symptoms in both columns and it is very SCAREY!

Normal age-related memory changes	Symptoms that may indicate dementia
Able to function independently and pursue normal activities, despite occasional memory lapses	Difficulty performing simple tasks (paying bills, dressing appropriately, washing up); forgetting how to do things you’ve done many times
Able to recall and describe incidents of forgetfulness	Unable to recall or describe specific instances where memory loss caused problems
May pause to remember directions, but doesn’t get lost in familiar places	Gets lost or disoriented even in familiar places; unable to follow directions
Occasional difficulty finding the right word, but no trouble holding a conversation	Words are frequently forgotten, misused, or garbled; Repeats phrases and stories in same conversation
Judgment and decision-making ability the same as always	Trouble making choices; May show poor judgment or behave in socially inappropriate ways

I began to search for the perfect quote that would say it all for us Fibromites.

I found the following quotes;

QUOTE MY REPLY

“Our health always seems much more valuable after we lose it.” – unknown VERY TRUE
“One of the keys to happiness is a bad memory.” ― Rita Mae Brown VERY UNTRUE!!!
“I hate when I put something in a safe place so I won’t lose it Not funny – happens daily.
But then forget where that safe place is” – unknown
“When it comes to memory, it’s use it or lose it” – unknown author BLAH, BLAH, BLAH
“Right now I’m having amnesia and deja vu at the same time; Wow – almost nailed it!
I think I’ve forgotten this before.” ― Steven Wright

“If you wish to forget anything on the spot, make a note that this thing is to be remembered.”-Edgar Allan Poe

Leave it my FAVORITE POET to make me laugh.

After spending forever reading quote after quote about memory loss I just couldn’t find the one that said what I truley felt about Fibro Fog.

I decided that I needed to make my own statement. So here it goes;

FIBRO FOG SUCKS!

Invisible? Not to me!

Posted on August 8, 2012 by swansonmjs

Arriving at work the other day my Manager greeted me with “you look like hell”, then proceeded to ask the following Migraine?, No Sleep?, Pain?, Been Crying?
My response – “yes”
On almost every Fibro site somewhere you will find a post, article, or item for sale that has the statement ~ “But you don’t look sick”.
Most weekdays for me that statement would be accurate.
Fibromyalgia is one of the Invisible Illnesses. I do my best every day to keep it “Invisible” as often as possible. (nice clothes, fun shoes, jewelry, make-up & a well practiced fake smile).

On this day, I looked the way I feel every day of my life.

So what’s the price of looking like we aren’t sick? For me it means a few altered daily items.

Clothing ~ I wear clothes that are made of soft, light fabric, preferably armless.

Shoes ~ It means that if I wear my “fun” shoes for more than one day – I will no doubt have a lower back ache or shooting pain down my one leg.

Jewelry ~ My jewelry even has started to aggravate my skin – it bothers my fingers to wear rings and my wrists to wear bracelets.

What you don’t see ….

. . . is after a restless, pain-filled night it takes 15 min. to an hour to get our stiff and achey body moving in the morning.

. . . is standing to brush our teeth or hair hurts.

. . . is that we either cried ourselves to sleep, cried our way to work or both.

. . . is that I take 20 prescribed meds & supplements on a good day (and I don’t take as many as most Fibromites)

. . . is that Fibromites have to watch what they eat.

. . . is that I see an acupuncturist and a chiroptractor to help me get through the month.

. . . is that every day we maybe experiencing any one of the following & more;

*light sensitivity leading to migraines
*difficulty sleeping
*fatigue/complete exhaustion
*lightheadedness/dizziness
*depression/feeling so alone
*pain, bloating & gas from IBS
*allydonia; the feeling of skin feeling sunburned
*low grade fever/chills
*forgetfulness
*sitting (hurts), walking (hurts), standing (hurts), lying down (hurts)

. . . is that on most days it takes every ounce of effort to get out of bed and face the day.

How can we describe it to non-fibromites? Try remembering the last time you had the flu. Your body ached? You were exhausted? You couldn’t think clear? Your head pounded? You were emotional? Could you have gone to work with those symptoms? You probably would have called in sick.
I along with many other Fibromites – go to work every day with these symptoms.
These are our good days.
Fibromyalgia may be called an invisible illness but for 3 – 6 million people in the world it is very VISIBLE.

Swept under the rug of Fibro...

Posted on August 27, 2012 by swansonmjs

I was like most Fibromites who struggled to get someone to believe them that there was something really wrong. First there was exhaustion, depression, anxiety, insomnia, body aches and pains. Results: Nothing found ~ It must be stress of dealing with the increased work load and a family crisis.
Next, I had a terrible jaw ache and migraines. After seeing a Dentist, a specialist, an Optometrist, a Chiropractor and having had an MRI I discovered that besides having TMJ there was “nothing wrong with me”.
After quite some time I finally couldn’t take it anymore sleepless painfilled days and nights. I went and saw a new much younger Doctor who not only was unaware of my medical history was willing to hear the laundry list of symptoms. Of course, that meant more tests but….
FINALLY, a diagnosis (more than one) Fibromyalgia, GAD & SAD.

YES! There was an answer – IT WAS NOT IN MY HEAD!!!!

I started reading every article, blog and online support group to gather as much information as I could. I would be silently reading and then start bluring out loud “This make so much sense”, or “I have this too”. It was like putting the pieces of a puzzle together. It all began to explain so much.
In addition I met a wonderful Chiropractor who specialized in treating Fibromyalgia patients.
Of course, that meant more tests and additional diagnosis ~

Degenerative Disc Disease and Mild Scoliosis.

Over the past two years I continued adding new symptoms.
Each time a new symptom presents itself I simply chalk it up to ~

“Another Fibro thing”

Have you recently looked at the list of Fibromyalgia symptoms and sidekicks;
(I am certain I am missing some symptoms) My current one’s are blue.

Pain Fatigue Night sweats Sleep Disturbance Parensthesia Depression Anxiety Subjective swelling of extremities Myofascial Pain Headaches/migraines IBS Severe PMS symptoms Morning stiffness Mild butterfly rash Hair Loss Sciatica Photo phobia Taste, Smell and hearing sensitivity Low Grade Fevers Restless leg syndrome TMJ Weight change Sensitive to Temperature extremes Cognitive Function problems ~ Brain Fog(Saying wrong words) TinnitusLow Body Temperature Restless leg syndrome Dry Mouth Low blood pressure Carpal Tunnel Syndrome Poor balance & Coordination Easily Bruising Muscle spasms

Over the past two weeks I started experiencing some new symptoms. I began having hard to explain head pains, light headed, dizziness and my fog has become so strong it has started to scare me. I visited my parents recently and had an episode. After telling them about what was going on my Mom reminded me of the family history of brain anuerisms and made it known in no uncertain terms that I was to visit a Doctor.
This time – I listened to my Mom.
However, I went into it sure that all the Doctor was going to tell me was another symptom of Fibro.
Just as I thought – the Doctor is 90% certain that my new symptoms are Fibro related. However, to be on the safe side he has scheduled an MRI for this coming Thursday. Since seeing the Doctor last week I have experienced 2 black outs and an increase in the light headed/dizziness feeling.
Altho, I am still certain that it is all Fibro related… this has all led me to start wondering how do we differentiate between what is caused by Fibromyalgia and what is something new or more serious that we should see a Physician.
Do we begin to assume that any health issues that arise are caused by Fibro?
Are we causing ourselves harm and putting our own health at risk by dismissing indicators or signs that could be other ailments?
What about our Family & Friends? Do they become so accustomed to us “Complaining” that they begin to tune us out?
How often do we ignore new symptoms?

Are we just …Sweeping them under the Fibro rug?

Fibro Ettiquette

Posted on July 27, 2012 by swansonmjs

Recently my daughter was trying to be funny and waited outside the bathroom door as I was getting ready for bed. When I opened the door she did her best to startle me. It worked. If you have Fibro – I don’t have to tell you how I felt. If you don’t have Fibro – just know that since we have overactive nerve disorders – the reaction isn’t just shock. It is painful.
She is usually so good at understanding. She often is offering to save me spoons. This time I got the 12 year old eye roll and I don’t think every single second of every single day that my Mom has Fibro. My reply was “I am glad that you don’t that means I am still fighting it. But remember that even if you don’t remember every single second of every day that I have it – I don’t have a second go by on any day that some part of my body doesn’t remind me that I do”
Well, that led me to thinking -
Maybe what we should have is big flashy signs with arrows pointing to us or a rewind/delete button – oh better yet – a force field so other’s can’t touch.
I love Bill Engall – I feel this should say – HERE’S YOUR SIGN!
“HANDS OFF”
When greeting someone with Fibro – don’t touch our back, squeeze our arms.
Never sneak up or surprise us – When you startle someone with Fibro – you get on their nerves – literally.
Did that hurt? continue to touch – really ? that hurts? YES!!!

Mirror, Mirror – Yes, I own one.
You don’t look sick - Well, Looks can be deceiving and just because I am in constant pain (and all the other symptoms) – doesn’t mean I lost my ability to buy cute clothes or look nice in public.
However, I may look pain-free but I AM NOT.
“HA-HA-HA”
Yes, I can laugh and smile at the same time as wanting to cry.
We can be happy and be in pain at the same time.
We are also very good at hiding the pain with fake smiles.
“Me too!”
I forget things too – everyone does when they get older.
Ooh, I hurt so bad too – everyone does when they get older.
Trouble sleeping? me too. Everyone has trouble sleeping the older they get.
Dr. Joe G Public
It’s all in your head. You are right – my head is full of nerves and so is the rest of my body.
I read they found a cure for that.
My friend/family has it – they are fine.
You just need more rest. lesss stress.
Remember the rule – If you can’t say something nice….
Must be stress. You just need to not do so much.
WOW – that is a lot of pills. I know – It takes me 8 oz of water and 4 handfuls to have my breakfast.
How old are you? You are way too young to have that.
I don’t know do I look Psychic?
In a lot of pain? - How come? Weather? Stress?
You went to bed early? How come your still tired?
You slept in late? Why aren’t you sleeping?
Words of caution (really not a threat)
Hurry Up – or give me a look like why am I walking so slow;
“Yes – I may look fine but I am going to walk very slow across this cross walk”. Seriously, I can not walk any faster.
Our minds are foggy – Don’t laugh at us when we mix up our words or can’t get them to spill out!
My best sign isn’t my own idea – I stole it from a fellow Fibro-mite – Robin
“To the next person who tells me no pain, no gain, those will be the last words you ever speak “

Wanted: Fibromyalgia

Posted on July 18, 2012 by swansonmjs

STATE OF WISCONSIN, CIRCUIT COURT, COUNTY
For Official Use

Plaintiff: Melissa Swanson
-vs-
Defendant(s) : Fibromyalgia, Sad, GAD, Degenerative disc disease, TMJ, ADD, Allydonia

Summons & Complaint: Theft/Larceny
(Defined as the taking of almost anything of value without the consent of the owner, with the intent to permanently deprive him/her of the value of the property taken).
Claim for money
Return of property (replevin)
Tort/Personal injury
Summons
To the Defendant(s): Fibromyalgia, Sad, GAD, Degenerative disc disease, TMJ, ADD, Allydonia
You are being sued as described on the attached complaint.
Complaint
The plaintiff states the following claim against the defendant(s):
Brief statement of dates and facts: The defendant(s) have over a period of years caused the loss of restful nights, pain-free days & the ability to stay up late. The defendant has stolen from the Plaintiff the enjoyment of a pedicure, massage chairs, going to the movies, wearing high heels, sitting through concerts or sporting events. The monetary expense has not been calculated. The medications, Rheumatologist, Chiropractor, Acupuncture, Supplements, Water therapy, Eye glasses (light sensitivity) and heating pads are a few of the expenses incurred.
In addition you have caused; constant Pain, Muscle Spasms, Fatigue, Morning stiffness, Paresthesia, Depression, Migraines, Weight changes, IBS, Severe PMS, Sub-Normal Temperature, Night Sweats, Sensitive to Temperature extremes, TMJ, Easy Bruising, Balance problems, Photo-phobia(intolerance of bright lights), Cognitive Function problems (Brain Fog): calculation difficulties, memory disturbances, spatial disorientation, difficulty with concentration, short term memory loss, frequently saying wrong words, and allydonia (burning pain, similar to bad sunburn).

Verdict

Guilty as charged!

A Simple Choice...not that Simple.

Posted on July 8, 2012 by swansonmjs

I recently spent some time with a few friends. I always make sure not to mention Fibro when I am around one of them.
She told me a few months ago in her words, “Oh, I had Fibromyalgia once but when the stress was gone I got rid of it”.
My only comment to her at the time was “Really, you are the only person I have ever heard of that was able to get rid of it”.
At the time of our get together I was not in a flare up but I was not doing well either.
Not sure if it was the roads, the vehicle or her driving but it was a painful ride.
We arrived at our destination – an outdoor auditorium on a college ccampus. She parked the absolute farthest away. Her comment was “no one minds, we can all walk.
I kept silent.
We walked to the seating area that was landscaped with tall walls in a stadium seating design.
Everyone stepped up the 1st and 2nd big steps before putting down their chairs – I walked the long way to avoid the high steps.
My daughter carried my chair for me and was asked why she was carrying two.
I kept silent.
We were experiencing 100 degree temperatures, full sun, no shade, no wind and high humidity.
The perfect weather for a fibromite to be sitting outdoors in a camping chair for 3 hours (Sarcasm intended).
Not to mention I was going to be late taking my meds and getting to bed.
It all could have been avoided. It was my choice after all.
I could have said that I was in too much pain or it was too hot.
I could have said I can’t be out that late.
I could have told her I couldn’t walk that far without it causing more pain.
I could have driven myself so I could have left early.
All of those would have been honest easy answers.
Why is it we can’t tell people the truth? What are we trying to prove?
Is it that we don’t want people to think we can’t do things – that we are “disabled”?
So many of us suffer in silence trying to keep our jobs ~ or not to complain so much we annihilate our friends and families?
We have been taught our entire lives to think of others first.
The courtesy of thinking of others and not speaking up about what may seem very minor daily activities could result in days or weeks of debilitating pain.
This means I need to change how I make my choices.
I need to chose to do what I can to help ME!
I need to choose to speak up!
It really is that simple!

I'm baaaaaaaack!

Posted on July 1, 2012 by swansonmjs

My time away has given me the opportunity to try new so called solutions for fibromyagia symptoms. As we all know every Fibromite has their own symptoms but not a single medicine or therapy works the same on any of us.
In the next weeks I will share some and the results.

Can you judge a book by it's cover?

Posted on June 3, 2012 by swansonmjs

Signs of an Invisible Syndrome

Chapter I. Blow drier & Closets

Chapter II. Clothes & Shoes

Chapter III. Shopping Carts & Parking Lots

Can you really judge a book by it’s cover?
Would you be able to tell by the shirt someone was wearing or the shoes they have on what kind of day they are having?
Most of us fibromites do not look like we have anything wrong with us. We forge through our busy days with forced smiles and once we are home you can see the real us – the toll that the day has taken on us.
Should we wear a sign? Do we apologize when our conditions affect other’s?
I don’t want Fibromyaglia to be the first thing people know about me but at times I feel like I have to be apologetic and explain why I am moving so slow, can’t reach low to pick something up or my thoughts are scrambled and the words won’t come out of my mouth.
During the day I run into so many obstacles that no one would know about unless told. The solutions are simple changes in our lives. So if so simple why do they mean so much to me?
The problem; It is too painful to stand and apply makeup and blow dry my hair. The solution; I sit on the toilet when drying my hair and applying makeup.
The problem; I couldn’t sort through my clothes on the top rod anymore. My shoulders and neck became to stiff and hurt. The solution; I put all my clothes on the bottom rod in the closet.
The problem; My balance is way off it isn’t possible to stand and put on clothes and shoes. Solution: I sit on the side of the bed to dress and the stairs to put on my shoes.
The problem; Recently I went to two different stores that required you to bag your own groceries. I couldn’t bag them fast enough before the next people in line were waiint to bag their items. The solution; None – I am slow I apologize again.
In addition, I use a cart for even a few items both for balance and the basket is too heavy to carry.
I park as close to the store as I can but still use the cart to get back to the car. I look at the signs close to the building. They read; Handicap, Elderly, and expeciting mother’s parking.
Where are the signs for us in pain?
The answer to the question – Can you judge a book by it’s cover? No – you have to look inside and read the book.

Are you a saver or a spender?

Posted on May 27, 2012 by swansonmjs

If you are a saver or a spender (tosser) in life.
Does that relate to how you live your health life?
The question I pose is should we save or spend our spoons when we find ourselves having a good day.
If you are new to reading my blog you should know that I have not been pain free in 2 1/2 years. I am often asked to number my pain level on a scale of 1 – 10. I find that too difficult since each body part varies all the time.
Today is Friday, the sun is shining (a bonus in my world) and I am feeling pretty good with only my lower back and hips hurting.
I have a three day weekend ahead of me alone – my family is going away and I have to work on Saturday (only 4 hours). I was upset at first about having the weekend alone and tried to get together with friends to no avail. So, when I woke this morning feeling such low pain and having tons of energy I decided to start my “to do list”
Those of you who know me, know that I am a multi-tasker, list maker, control freak. A type “A” personality. I like everything to be a certain way. I have baskets to organize things and label trays so they get organized correctly. Anytime a crisis arises – I go into “Fix-it” mode. I make lists, check off sheets, and even create forms to help me make better lists and check off sheets. My brain is always spinning with thoughts that I need to get down on paper so I can get them out of my head.
I have a “to do list” on a white board in my kitchen and I filled the board with all of the chores I hoped to accomplish before my family returns.
If I had to be classified a saver or a tosser – I definitely would consider myself a tosser. I keep only those things that have extreme sentimental meaning to me.
Here I was faced with a 3-day weekend. A “Free” weekend – where I could get clean, toss, organize and write. Since last night I thought I needed to take a hot bath. By the time I sat down and thought it would be a good idea I looked at the clock and saw it was my bedtime. Even sitting here typing in my chair with an Ice pack on part of my body and a heating pad on another part I know it would be best if I went in the bathroom for a long hot bath yet Everytime I get set to do so I find another thing I want to get done before I take a break.
This takes me back to my original question. Save or Spend?
Crystal ball anyone?
Are the results of a clean “to do ” list going to balance the results of how I may feel after completing all of that work or should I take it easy, relax and enjoy the quietness with early to bed, late to rise, long baths, mystery movies and blogging.
Will it make a difference? I am already tired, sore and in pain daily. Would taking a “down” weekend make me keep my “spoons” or even add some to next week? Or, will I enter a horrendous flare after doing so much?
I will try to do a mixture of both work and rest. Time will tell.

We cannot direct the wind but we can adjust the sails. ~Author Unknown

Walk in another man's shoe or at least try to walk.

 

Posted on May 20, 2012 by swansonmjs

Walk a mile in another mans shoes is a well known phrase.
It’s interpretation is that one can not really understand what difficulties one has faced or is facing until you face the same challenges.
I belong to 4 online support groups. I read them every day offering encouragement when I can. There are many posts explaining how they don’t leave their house or bed due to the pain. I always suggest they move, even if to mailbox, even if it’s baby-steps – as long as you step.
For me going to bed has always taken time to get the right position, the pillows placed and the ice or heat applied. I have always been sore getting out of bed but I could still get out of bed on my own.
A month ago my work hours changed so that I no longer had the opporutnity to swim 5 times a week.
I entered into my longest and most painful flare. This flare was different. I had to plan my workday around when I needed to stretch with when I needed to get my reports, faxes, etc. I needed help getting in and out of bed and assistance getting in and out of car. I found myself taking tramadol, trazadone, and even vicodin. It barely touched the pain.
One of the mornings while still in bed because my left leg wouldn’t work I began to cry. I had cried a lot during this flare due to frustration of the fog and that I couldn’t find the “it” to stop this one.
This time I was crying for others. This time I understood. I realized I had judging those who said they would spend all day in bed and never leave the house.
I would comment to my family and friends that these people were hurting theirselves. Even tho as difficult and painful as it is to move if they would move they would feel better by doing so.
I wanted to say I’m sorry for every time I thought “Why don’t they just get up and move?” I never understood why they wouldn’t get out of bed, why they wouldn’t leave their homes.
I thought I’m in pain but I still get up and go to work, live my life with as a working wife and mom of a busy pre-teen. In my mind I felt that my pain is decreased because I keep moving -swimming is my savoiur : “Why can’t others?”
I’ve been so fortunate unlike many I have gone long times in-between flares, have found the opportunity to swim and the meds that work most of the time.
Although I still believe that in order to keep fighting Fibro from keeping us bed-ridden we need to move.
I will no longer be so quick to judge someone.
I will encourage and hope they have the support that I do that keeps me moving every day.

Assume (you know what they say)

Posted on May 16, 2012 by swansonmjs

Over the years I have not only heard the phrase “Don’t Assume anything” but I have spoken it to my Daughter already numerous times.
Assumption means; A thing that is accepted as true or as certain to happen without proof.
I recently had two incidences within the past week that led me to do more thinking about how looks can be deceiving and why we shouldn’t assume anything based on appearances. I was in the changing room at the gym for my Monday a.m. swim. I was already changed when another regular came in and started complaining about the benches being in her way. She said, “Oh great, they moved them again”, “I don’t know why they don’t just move them out of here”.
Prior to having health issues I would not have cared and if I had cared I never would have spoken my feelings out loud.
Fibro may have taken so much from me – pain-free days, sleep filled nights – but it did give me the courage to speak up and use my voice.
My reply to her was “I do, they need to be here for people like me who need to sit to get dressed”.
The second situation occurred the other night when my GF and I attended a girls night out spa event. While standing at a vendors table she offered me a hand scrub. I would never turn down a free spa treatment. She applied the scrub lotion and asked that I rub it into my hands. Then all of a sudden I felt this pain on my upper back across my shoulder blades. She had without asking began to use one of those hand held massage tools across my back.
I hollered “Stop”, you can’t do that to me – I have Fibro and my nerves are on fire”. She said she was sorry and then went onto attempt a lighter massage. What part of stop do people not understand? It hurts!!! Don’t touch me!!!
Within a few minutes my FG was standing at the same table with the hand scrub on her, making a sighing sound because it felt so good.
The same thing that caused her to be relaxed caused me to almost be drawn to tears. Why don’t people ask someing if they want to be touched? Don’t Assume!
I think our society still looks at people and believes unless you can physically see someone has an illness or disability that there is nothing wrong and they are healthy.
I push through fighting each day to not let fibro take over my life. There has not been a day in 2 1/2 years where I was pain free. I can’t recall the last time I could go to or get out of bed without it taking mental and physical work.
I work at it so that isn’t so obvious what medical conditoins I battle each day. I don’t use a walker or a wheelchair but at times I can’t stand up or walk without someone’s help or wall support. I don’t have a handicap sign or use an electronic cart at the store but the simple task of parking and walking all the way through the lot or store will wear me out and take hours to recover.
Keep your eyes open to the unseen – the person you see walking and smiling might have just struggled an hour to get ready for work, cried her way there and is hiding a very real invisible illness.

What's new? Watsu is new to me.

Posted on May 9, 2012 by swansonmjs

According to http://www.watsu.org.nz/ Watsu is a gentle form of body therapy performed in warm water. It combines elements of massage, joint mobilisation, shiatsu, muscle stretching and dance. The receiver is continuously supported while being floated, cradled, rocked and stretched. The deeply relaxing effects of warm water and nurturing support, combine with Watsu’s movements, stretches, massage and point work, to create a bodywork with a range of therapeutic benefits and potential healing on many levels.
Moments of stillness alternate with rhythmical flowing movements, which free the body in ways impossible on land. The warm water relaxes the muscles and supports the spine. With this support and without the weight of the body, the spine, joints and muscles can be manipulated and freed in a way unique to water work. The effects include a very gentle, yet deep stretching and a release of muscular and joint restrictions, along with a state of deep relaxation, which encourages the release of stress and tensions.
I belong to several online support groups and every time I see someone trying something new whether it is a new medication or therapy - I try it. Recently I read about a person who had attended a session of Watsu. I did my normal thing – research, research and more research. I found that the rehabilitation center that I had attended for Fibrocize offered Watsu. The therapy pool is set at 85 degrees, has a ramp or stairs for entry and benches along the side to sit. The hot tub is a part of the pool so is easily accessible.
I had been on my longest flare that I have experienced. It seems that when I get them they are stronger and last longer. I decided to make an appointment with Holly one of the three therapists that perform Watsu at the Courage Center.
Even though I had done my reading I still did not really understand what I was going to be doing. She explained that I would be using floating devices attached to my ankles to help me from sinking. I would also have another floatation device under my knees and that my neck would either be supported by her or a floatation device. She told me that I would lay back and that everything but my face would be in the water and that for the next hour I was just to lay back, close my eyes, relax and just let my body go limp. . She would be moving my body and wouldn’t push it too far since it was my first time.
Basically – I was being told that for an entire hour I was supposed to do nothing, relax and give up all control of my body.
Ok – for those who know me personally – you can stop laughing now. I can do those things – really I can. Seriously – you can stop laughing.
What happened the next hour? I laid back, eyes closed and let the water take over.
I can honestly say that for that hour I felt relaxed and more importantly I felt no pain. How is that possible? I can’t even flip from one side of my body to the other side in bed without major pain. Even while during my treatments at my wonderful Chiropractor I experience pain. When the hour was over I was placed on the bench in the water. She said that I should keep my eyes closed and take my time to come back.
Afterwards, she asked what I thought of it and how it felt. She could tell that I had let my body “go” or relax. She then told me that even though I had been relaxed – she could tell I was in a flare. She could feel my nerves pushing almost fighting back. It has been almost a week since my session. I am out of the flare. I wish I could say I knew it was the reason. I don’t think I will ever know what the exact cause of the flare to start or the end. I just need to keep trying to find out how to keep them further apart.
I’m not sure whether I believe entirely in all of the astrological signs. However, the more I read about earth, water, and organic/natural remedies – I am changing my mind.
I no longer think its a coincidence that my birth sign is a water sign. One site stated that Cancers health issues generally have a strong emotional component. Water sign people easily pick up negativity from others. They tend to be stiff and dehydrated and have difficulty sleeping.
For me, it may be the perfect astrological sign; I belong in water – it’s been my pain saviour.

Weather report:FOGGY!

Posted on April 18, 2012 by swansonmjs

Synonyms: groggy, befuddled, blear, blear-eyed, fogged, woolly, blurred, logy, woolly-headed, wooly,brumous, addled, fuzzy, fuzzed, misty, blurry, muzzy, muddled, bleary, stuporous, hazy, dazed, bleary-eyed, clouded, wooly-minded
Hands are numbs, arms and legs on fire (nerves are on high alert), mind is spinning, mouth is dry, eyes are burning, fog has moved in and taken over.

I just want someone to understand.

Posted on March 31, 2012 by swansonmjs

When writing my blogs I think about what has occurred or bothered me that maybe can make people who are non-Fibromites to understand if even for a moment some of the things we face. It have spoken about it previously that I had researched what would help me with the light sensitivity. I had not only online but by calling optometrists to find what kind of non-prescription non-glare tinted glasses I could buy to wear instead of always wearing my dark sunglasses all the time.
I thought that it didn’t bother me anymore. The majority people that see me when I have to wear them indoors have known me long enough that they know why I have them on. I get a few comments once in awhile – like “bad day?”, or “headache?”, “rough night?”. Mostly I reply – Lights are just too bright today.
We went to get our daughter her eye exam today – perfect timing for me to get my glasses. I knew what I needed.
They had to be brown tint – level 2, non-glare coating. I had lasik years ago and the thought of having to go back was killing me. The torture part of having glasses was always picking them out. However, my Daughter has great fashion sense and the pair that I would no way have picked out was the winner.
I sit down to place the order. First, they tried to tell me they couldn’t sell them to me because my prescription had expired. Prescription? I don’t have need one. My vision is still perfect. I almost had to argue with them and said I would go elsewhere then to buy them. Once the doctor told the tech that I was fine and they could order them with a zero prescription – we continued. Then – it has to be plastic because they can’t tint the other stuff and then they can’t do the tinting and the non-glare together. It could be UV but not non-glare.
They said we have sunglasses here that you could get. I HAVE SUNGLASSES!!!! Lots of them.
I cancelled the order and left to go take a walk. I went to the bathroom – and cried. Afterwards, we did our shopping and as we were leaving I asked if they understood why it upset me so. They said not really and that “didn’t think it cry-worthy”. My reply – I don’t get to live any of my life “normal” any more. Every part of my day whether awake or asleep has cause, effect, consequences. I want to be able to sit in a room full of parents at 8 p.m. at night in a school room where the lights are too bright and still look like the others. I know it is a petty small thing but it is one of the few things I can control now.
I will go to another optical store next week and see if they can help me.
If not, I know that it is one more thing I can add to the chart – Fibro gets another check – it wins another small battle – but I will win the war.
Fibro may win when it comes it’s symptoms against my body – but I intend to keep on fighting to win the biggest challenge of all – to win the battle of the mind. Yes, I want to win the challenge of thought – how I think about it, how I react, how I deal with it all – but more importantly – to continue on support groups, blogging and connecting with those who have Fibro and those who do not.
Afterall, my wish today – is “I just want someone to understand”.