The Rheumatologist

The office is quiet as I sit here waiting to meet my new specialist.  I cannot help but think…  damn, this is how the world might be from now on, all of us wearing masks, staying six feet apart, walking into sparse rooms with the allowed number of people…  Oh, and how can I forget being approached by a masked, gloved nurse to have my temperature taken upon entering the building.  If all this was not stressful enough, there is the reason I am here in the first place;  to meet the newest member of my medical team, the highly recommended rheumatologist, to add another piece to the puzzle of my dysfunctional body.  I want my quality of life back… 

  So here I am in my N95 mask, waiting to meet Dr. Bones (no names or centers will be released in this post).  My heart and mind are racing.   I have so many questions!  I have been prepping for this appointment for over two months.  At a glance, I might appear calm as I sit with my notebook placed on my lap until you notice one of my legs bouncing up and down.  Breath! I tell myself.   The door opens slowly and a petite, dark-haired, very young woman walks in (wearing a mask of course).   “Hi, I am Dr. Bones”.   She sits down and immediately starts to review my medical records.  There are almost no words exchanged,  but it is okay.   I felt she was really trying to make sense of the numbers before her;  maybe something has been overlooked in my previous labs, or maybe there is a false negative.  Whatever the case might be,  Dr. Bones put on gloves and started the trigger point test.  It took only a second before she touched my arms causing me to jump.  I told her to stop.  It felt like sharp razors were being dragged along my skin.  My body’s immediate reaction was to give me goosebumps and put me on high alert to protect myself- as if I was experiencing major physical trauma.  She cautiously continued as she monitored my reactions.  She broke her silence and confirmed the speculations of my other doctors.  She told me I had a very severe case of fibromyalgia that probably started with my birth and accelerated with certain events during the first few years of my life (you can read about that in a previous post).  So it seems,  at a very early age my nerve endings were already heightened and more receptive to developing fibromyalgia later in life.  Then, when you sprinkle on more physical trauma as the year’s pass, it leads to nerve endings that are angry and ready to cause unbelievable pain for no reason in the blink of an eye. The worst part is it will continue for the rest of my life!   UNACCEPTABLE!!!     

  I should be ending here with one of the most painful of all diagnoses of fibromyalgia,  but there is more to tell my doctor.   I describe an extreme pain in my spine that makes loud, deep cracks when I move a certain way.  Without a word, she ended the physical exam today.  With pen in hand and an intense look on her face,  the rheumatologist began writing several pages worth of lab tests, x-rays, and scans that would need to be completed before our next visit.  Though I will be proactive and get all my testing done,  technically,  I am in a state of limbo until my next appointment.  So, to be continued…  

 

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

The Fine Line Between

If there is one thing I am unable to stand for it is that of non- transparency of businesses. That is why I am here to give a little more understanding of how I went from being bi-polar, to I have severe anxiety, PTSD, Fibromyalgia, and some unknown auto-immune disorder. The line between mental and physical health is a fine one, so many symptoms overlap, present themselves as something they aren’t. Even the best can get it wrong, but not so wrong that it does not make sense.  So here is the evolution of how it went from mental diagnosis, of Bi-polar, to actually being severe PTSD, which has now turned into severe physical conditions.

Bipolarbree1, started as a way for me to process my thoughts, and the desire to connect with others who might be going through, and or has gone through a similar situation as myself. As time went on, therapy sessions took place; medication checks up’s and changes were frequent but my irritability, inability to stop drinking, think before I took actions, night terrors were all still present, something is not fitting with this bipolar diagnosis, not to mention this is the beginning of when my body started to turn on me.   During my next visit, Dr. Matt and I decided we should retest me, using the CAPS-5 gold standard in post-traumatic stress disorder testing.

As I sat in the cool waiting room reading and answering each question as my life depended on it, because it did, but I did not know it at this point. So I finish up this and returned it to the psychologist whom I just had to disclose three of the traumatic events.  It was one of the hardest things to do because I believed I had cleared the trauma and was able to talk about them, but within the first few words, I was physically and mentally in a different state.  She advised, I keep seeing Dr. Quintal because I am a long way away, and it seems to her I might not be Bi-polar, but severely traumatized, but we will have to wait for the CAPS-5 test to come back.  I had scored off the charts for Posttraumatic Stress Disorder, and it was advised that I stay in weekly therapy along with Rapid Resolution Therapy.

As I cleared the troubling events, a lot of the symptoms were left at a manageable level with therapy, medical marijuana, and writing. Writing is my way of best self -understanding, and expression. There were some, that no amount of therapy could fully cure, especially if the threshold you have for trauma was started damaged, so from a medical standpoint, I was at high risk for developing fibromyalgia, So that with all the events that caused me to be traumatized added to this life-altering, extremely painful diagnosis of fibromyalgia, and there is still one mystery diagnosis on the table we are testing for, this one goes under the chronic pain condition they also gave me, because they have yet to figure out why my spine feels as it is being crushed, and the horrific spanning sound, not normal at the young age of 29. So this is now the journey of life with Anxiety, PTSD, Fibromyalgia, and a mysterious auto-immune disorder.  I will cover everything from how I manage each symptom, what it feels like,  how I am going about with research, and everything in between.  So thank you for taking your valuable time to read my journey.

 

 

Resources: https://www.ptsd.va.gov/professional/assessment/adult-int

/caps.asp

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

 

 

 

 

 

 

 

 

 

 

 

 

Fibromyalgia – The Flare

So here I stand wearing nothing but a soft sports bra, and very soft panties because anything else against my skin is complete agony.  The breeze from the fan keeps my body cool, maybe cooler than I want to feel, but turning it off would make me feel nauseous.  This is how it starts.  There is a mental checklist of red flags that signal I am about to have a flare-up.

I can almost feel my brain telling the over-active neurons within the central nervous system what body part it should attack.  It usually starts with an intense tingling sensation in my right hand,  moves quickly across my upper shoulders, then shoots down my spine, and then zap!…  My body now starts to feel as if it has been set on fire, with nails being dragged across my burning flesh.  Agony is what I feel and this sensation is called Allodynia.  *

Did you think I was in a “ full flair” yet?  Nope, this is just the start.

Ugh.  My ears are so sensitive to sound! Why is everything on max volume?  The fan that is keeping me from feeling nauseated, is making me freeze now.  A few hours have passed and my body is experiencing about five to seven different sensations all at once, whether they go together or not. The feeling that my brain is too big for my skull, is a strange one.  Around this time I usually start to throw –up, because the pain and my senses are on over-load.  So now, here I lie on the hardwood floor, with a low –grade fever, my skin on fire, the bones in my spine and upper neck, and sometimes my face feels as if it is being completely crushed, and… I still have that burning sensation that feels like my skin is on fire that has not gone away! I need it to stop!  Frustration!

 

If being physically robbed of your quality of life wasn’t enough, it takes your mental clarity, memory, and energy as well. One of the most frustrating. A symptom is called something called “ Fibro Fog”.  Fibro fog is a cognitive dysfunction, which affects your ability to think clearly, and even remember the simplest thing.   I have learned I do need a sense of humor when it comes to having fibromyalgia.  More than once my cell phone was found in the refrigerator.  If there is not humor towards yourself,  this diagnosis will try to control your life. This is part of the reason why I have not posted in literally forever. I have been trying to manage my fibro and all the horrific and painful symptoms no one can do anything about.

 

* Technically Allodynia is the experience of feeling pain from stimuli that aren’t normally painful and the result of a pain processing dysfunction in the nervous system. *  Though usually associated with migraines there is a crossover to fibromyalgia. There are three types of Allodynia:  Static allodynia is what one feels from a light touch on the skin; Dynamic allodynia happens with movement across the skin; Thermal allodynia happens in response to mild changes in the temperature.  Though usually associated with migraines there is a crossover to fibromyalgia.  This is only one of the hundred life-altering symptoms one can experience, but this is enough for one day, at least for these fingers it is.

 

 

 

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

 

Reference: https://americanmigrainefoundation.org/resource-library/what-to-know-about-allodynia/