Embracing life with chronic pain.

Archive for March, 2016

The Struggle

Receiving the diagnosis of Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/and-or any other chronic condition is a huge life changing event.  It comes with a wash of initial emotions and questions.

If you are like me, the time leading up to the diagnosis as well as the time that has elapsed since the initial diagnosis have been filled with more tests….more doctors….more specialists….along with more research on your part.

We wear out our keyboards and few working brain cells….to view forums, blogs, medical research sites, etc….all in an attempt to connect with others….which also helps to reinforce the fact that we are not alone!

There are days that we are “in control” of our emotions….by this I mean…that we understand that we have a permanent condition.  For some, its impact is minor/moderate….for others (like me) its impact is extreme….robbing us of all things that we enjoyed and took for granted!

We focus on putting our best “foot” forward….enjoying those few things we can do….like being able to walk to the restroom with a walker….step outside to sit on the porch and enjoy some fresh air….we remember that the milk goes in the frig…or to simply recline and have no muscle spasms.

It is inevitable though…..to have those times when we feel frustrated….overwhelmed…wish that things were like they were before….

Some are able to find relief with medicine…..some with supplements…..some with alternative treatments…..others, like me…..may het be searching for something that will work!  Something that will at least dial down the daily pain/symptoms.

Don’t get me wrong….I am so thankful that my body will tolerate Cymbalta!  (So far the only med……) I am also thankful for the pain specialist that I have seen that stated that simple gentle stretching is the best form of exercise for me right now…this provided a good daily goal for me….something that is usually attainable!

However…knowing that there is really nothing traditional medicine can help….realizing that many of the alternative options are also out….and waiting for another 4 months until the next specialist (Functional Medicine)….and then the additional wait time for all of the tests to come back…..adds another layer of stress!

I am glad there is another option to explore…..yet…there are days that I just wish something would happen….like…maybe I would awake to find that I was just having a bad dream!

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Brain Fog

OR….My Brain on Fibro!

Awake in a daze

No focus….eyes blurred

Eyes to heavy

Use walker to find bedroom

Collapse under covers

Now in recliner

Wow ceiling is bright

Sun through the window

Sun glistens on the water drops in the trees

What was that sound?

I must use lotion on my hands

Where is my water?

I am so tired

There is my cup

So much burning today

Look at all the colors in the carpet

The coffee table is so pretty

Where is my water?

What is that smell?

Oh yeah! I am heating up a snack

Just a slight breeze is moving the trees outside.

I am thirsty!

Where is my water?

I better check my snack

There’s my cup!

LOL right next to me!

What was I going to do?

Silence

Yes….there has been a lull in my writing…simply due to the fact that I am having great difficulty in focusing!  The brain fog and inability to focus has been overwhelming.

As I attempt to just write a brief note, I catch myself rotating my head…looking out the window…glancing to the ceiling…glancing at the TV…pausing to focus on the continuous ringing in my ears….

Oh right!  I thought I would try to write a brief note!  LOL

Yet Another Specialist

Yesterday I met with a pain specialist with a background in anesthesia and chronic pain conditions.  What impressed me most was that he had taken time to review my file…he was also very gentle with his exam…understanding that I was all ready hurting.

Our discussion was very frank….he reinforced the fact that so much is not yet known or understood about Fibromyalgia.  He also said he could easily say that I am the worst case he has ever seen.

Due to my body’s “unique” response to medications…..basically….overly sensitive to almost everything….he was very pleased that I could tolerate the daily 60 mg tablet of Cymbalta. He reassured me that Fibromyalgia is a true diagnosis….it is part of the Chronic Pain Syndrome family.

As he discussed some possible options, he took time to write the various ways to address Fibromyalgia….as he spoke about them…summarized by the headings of Meds, Other Meds, Functional, Behavioral, and Others….he crossed off all the ones that I could not have.  The few options left were assigned to me to research.  Like he said….I know my body and how it reacts better than anyone…

Once home, I was excited to begin my research.  Of the three medicinal options of Named, Naltrexone and Ketamine Infusion…..my review of the rare side effects (which inevitably are how my body responds)….quickly ruled out the first two.  The Ketamine Infusion remaining as an option.  One that my husband and I are hesitant about because of my body’s usual reaction to anesthesia…..even thought this would be an extremely low dose.

The one option that he discussed that really piqued our interest was that of Functional Medicine….there is a doctor who is a leader in this field within about a 45 minute drive. The specialist spoke about the additional tests that would be done, saliva, blood work, etc. that would be sent to various testing sites to determine chemical imbalances, etc. Much more detailed testing than has been done to date.

He also praised us for all the effort and work we have put in so far….the many specialists, tests, and research were good.  We have narrowed the field…..he felt that the Functional Medicine would be the next best option….to exhaust all medical tests that exist at this time.

We also discussed what could be an option if Functional Medicine is unable to offer any sort of relief…thankfully any type of a radical decision (like an internal pain pump)….is quite a ways down the road.

I will have a follow up with my pain specialist to review my research and to discuss our preferred option(s) in about two weeks.

I have also made an appointment with the Functional Medicine doctor….which will not be until the middle of July.  (Yes…I requested to be placed on the cancellation list….and I called my pain specialist’s office to see if they could help “pull any strings”.)

In the mean time?  I have been instructed to continue stretching daily.  I am to consider “stretching” my exercise…..be diligent and not overdo….just the gentle stretching to help the tight weak muscles.

For the first time, I feel that we have a “game plan”….it will not be quick….that is for sure!  But there is a plan!  And I have the right doctors in place…

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We Are Unique

Unique

What???

I wish I could remember

I wish I could think of my thought

That I thought was important…

Important enough to share with others.

Our “hidden” illness/conditions

Put us in such an awkward position

We must present ourselves

In a strong manner to those around.

We dare not

Give in or let down

Our guard

For we fear

Our loved ones might see.

Yet…we cannot remember

We cannot complete

We cannot say

The sentence

Or question

That was on our tongue!

It is the frustration

It is the injustice

Of our conditions/illnesses!

We look completely healthy

Yet…if you could see….

The true part of us….

Our inner being….

Inside we are SICK!

Inside is a battle

That Science does not understand

No full knowledge is known

To explain why

We can appear SO fine

On the outside….

Yet!

Be so SICK inside!

We Are Not “Complainers”

Living in the world of chronic illness/conditions brings many struggles that those not in “our” world take for granted….like…going to the doctor because of cold symptoms, a sprain, or infection.

I say this because it can take a long time for us to realize that something else is going on….that what we think is just a normal “ache” is not normal…..or that pain we feel is just a normal part of our illness.

I know that I don’t want to be seen as a “complainer”….nor do you!  It is so difficult when we go to our doctor visits…..we rehash the same-oh same-oh…..we must answer the answer to their pain scale questions…….we must try to remember what we want to discuss!

I am thankful for my smart phone….when I have a thought I want to speak to my doctor about, I add it to my notes or tasks….then when I do have an appointment, I can bring up these issues…..

However, this last visit…it was difficult to bring up issues that I have been dealing with…..I was embarrassed and afraid of sounding like a “complainer”!

Thankfully….my doctor and her nurse are awesome!  Her nurse quickly reassured me that I was not a “complainer”….that I should report anything….ANYTHING….that is not normal for me.

I then “spilled the beans”….my pelvic region had been hurting….it was painful to urinate….

I then decided to turn this to a positive!  When my doctor came in, I proudly told her that I had an issue that I knew she could help me with!  Then I went into the symptoms….even though I could feel the heat rising in my face!  LOL

I was able to obtain the medical care that I needed!

What I learned? The MOST valuable lesson that all of us with chronic illness/conditions need to know!  We often feel that we are just a broken record….reporting or recording the same symptoms, more or less, each and every day.  It is TOO easy for us to feel that we are just “complainers”…..after all…no one else in our immediate sphere is living in constant pain!  LOL

Just remember…we are NOT “complainers”!

We MUST report to our doctors ANY symptom that is NOT NORMAL for us!

I know that this would have prevented me from dealing with such a severe bacterial infection!

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