For those of you who didn't already know this, Poiema and I recently made a trip to Mayo clinic. The whole story doesn't start in June though, it started last August when Poiema started getting pain in her hands that had been labeled as Carpal Tunnel. This pain increased and grew into massive headaches that left the doctors clueless as to what was going on. In February her general practitioner told her to go to Mayo Clinic Research Hospital in Minnesota. For her first visit, her sister Shekinah went up with her. On this visit she was ran through the gamut of tests as the doctors tried to figure out what was going on with her. Towards the end of her visit the spinal doctor did a test and told her that he suspected that she had Fibromyalgia. He referred her to the Mayo clinic Fibromyalgia and chronic pain clinic, but because they are really one of the only places in the U.S. that has a specialization in this area, the closest appointment was June 17-19.
Poiema and I quickly decided that I would go with her, since I wouldn't mind visiting my family, and the first day of her appointment was my 22nd Birthday and we wanted to spend it together. One of our biggest prayers throughout this time was for clarity. That when we went up to Mayo that it would be very clear that she did or didn't have Fibromyalgia, and that we would be left with no doubts.
Throughout the spring Poiema struggled with her symptoms but was massively helped by medication used for fibromyalgia that made it so she could finish up the semester. This trip gave us something to look forward to this summer as we both miss being roommates and were looking forward to spending some good quality time together on this trip. The simple trip to Mayo quickly turned into a road trip to visit Luke in Missouri, Keith & Lindsay in Illinois, Luke's Mother in Illinois, my parents in Minnesota, staying with an old highschool friend of mine in Minnesota, visiting my grandparents, aunt & uncle and cousin in western Minnesota and South Dakota, and then a very long drive back.
On June 17th, I woke up at 4:50 on the morning of my 22nd Birthday to drive my roommate to Mayo. I even let her sleep in the car on the way over (And as someone who is NOT a morning person, you must understand the depth of love that it takes to do this). Anyways, our first appointment was with a nurse who asked us hundreds of questions. Literally, it was over 100 questions between the written and spoken part of the test. She also did a pressure point test on Poiema. After she left, Dr. Mohabbat came in to talk with us. He informed us that Poiema very very positively has Fibromyalgia. Out of 18 criteria for the 1990 test (with 11 being positive), she had 18. Out of 19 criteria for the 2010 test (with 5 being positive), she had 17. We asked God for clarity, and He came through.
I don't really know how Poiema felt in that moment, but I know for me it was almost a sense of relief, to know that Poiema had this confirmation that it wasn't in her head, and that now we could move forward with helping her regain her life.
His first question was to ask us what we knew of Fibromyalgia. After telling him, he told us that although we weren't wrong, there was much more then that going on. He also told us that over 95% of what we see online concerning Fibromyalgia is also wrong & that the most important thing we can do to help Poiema is to educate the people in her life. He then began explaining to us what it actually is, and since educating people in her life is the most important way that I can help her, I am going to attempt to explain to you what Fibromyalgia is in layman's terms.
Historically, Fibromyalgia was very probably known by names such as Rheumatism or Psychogenic Rheumatism. It was labeled as Fibromyalgia before Doctors really understood what it was. We still don't know why it happens, but it is believed to have a genetic tendency to carry down through a family. It is most commonly seen in young white women, and Dr. Mohabbat said he has yet to see a case that hasn't occurred in someone who wasn't a type A personality.
understanding Fibromyalgia is not simple, as there are multiple components to it, and we don't yet fully understand it. For starters, Fibromyalgia is a syndrome, not a disorder.
Before we go any further I need to explain some areas of the brain, the thalamus, hypothalamus, and the amygdala. These three parts of your brain work together every day to process life, give you energy, control your moods, and control your temperature.
Thalamus: translates the bodies signals. It learns to tune out normal things like a breeze but also alerts the brain to pain, pleasure, etc.
Hypothalamus: Controls your body temperature and energy levels in your body.
Amygdala: Controls your mood.
In doing research, they discovered something interesting. When you poke a normal person in the left hand, the part of their brain corresponding to the left hand (right side of the brain), lights up. In a Fibro syndrome patient, not only does the corresponding area of the right side of the brain light up, but so does 3-4 other areas of the brain not necessarily on the right side. Here's what is happening. Think of the post office at Christmas time. They are getting soooo many packages to ship off that they get overwhelmed and are understaffed. This is a Fibro patient's Thalamus. Now, imagine that the post office worker goes over to McDonalds and gets the cashier to help the post office out. This cashier is willing to help but has no idea what they're doing. Soon enough the packages are being sent to Idaho instead of Florida, and Arizona instead of Wisconsin - this is a Fibro patient's Hypothalamus and Amygdala. There are so many pain messages coming through the Thalamus that is has to attend to that the hypo and amygdala are also helping out and sending messages to the wrong place. This causes body temperature to flux, mood swings, decreased energy, lack of good sleep, and a confused brain.
But why is the thalamus getting so many pain messages that it must attend to? When you poke your finger, the nerves send a message to your spinal column saying "Ouch!" your spinal column then sends pain chemicals (Substance P & Glutamate) to your brain conveying the level and location of pain. In response your brain releases pleasure chemicals to reduce pain and stress on the body (Dopamine, Serotonin, norepinephrine, epinephrine). In a normal person the presence of the chemicals is about half and half. In a Fibro patient, the presence of the pain chemicals is 8x higher then the average person, and the presence of pleasure chemicals is greatly reduced. this means that more signals are sent in at a higher level of pain importance and that there aren't enough pleasure chemicals present to reduce the bodily stress and reaction.
There are different variations of treatment used to keep symptoms under control, but there is no cure for Fibromyalgia. Drugs used are to either reduce the level of pain chemicals in the body (like lyrica), or to increase the presence of pleasure chemicals in the body (like Cymbalta), and are often used together to help bring the body back to equilibrium. The biggest part of treatment is to learn how to manage self. Mayo clinic has a 12 part Self-management wheel that is a major part of the treatment. For this, we spent two days sitting in 12 hours of classes. The main areas of focus in this class was on clean sleep, exercise, nutrition, and moderation. The idea is to keep life at a manageable level. To not over plan, and to live healthy to help decrease symptoms.
As a supporter I learned that the worst thing I can do is to ask her how much pain she is in, or how she is feeling. Asking about the pain reminds the brain that it's in pain and causes her to be in more pain. It's my job to live life with her and be her friend, not a care taker. Letting her live a normal life is one of the best things we can do. We do have measures in to deal with bad days, but for the most part, I do my best to just be her friend.
So what does life look like? Well, Poiema is learning to eat a balanced diet, to try and not take on too much at once, and how to survive planning a wedding and being a psychology major. As friends, we're learning how to support her, be there for her, but mostly how to just be the best friends that we can be for her. Poiema and I feel super blessed that she was diagnosed so quickly (9 months, with the average diagnosis taking 5 years), and for the community that she already has around her. For the friends that make her get up and not lay around all day (That may have been me...) and for the wider family that has supported her in prayer and continues to be there for us.
Thank you for all the prayers that kept us safe on our road trip, and for the prayers that continue to surround Poiema as she learns to balance life.
Soli Deo Gloria
-Sara Jean
Poiema and I quickly decided that I would go with her, since I wouldn't mind visiting my family, and the first day of her appointment was my 22nd Birthday and we wanted to spend it together. One of our biggest prayers throughout this time was for clarity. That when we went up to Mayo that it would be very clear that she did or didn't have Fibromyalgia, and that we would be left with no doubts.
Throughout the spring Poiema struggled with her symptoms but was massively helped by medication used for fibromyalgia that made it so she could finish up the semester. This trip gave us something to look forward to this summer as we both miss being roommates and were looking forward to spending some good quality time together on this trip. The simple trip to Mayo quickly turned into a road trip to visit Luke in Missouri, Keith & Lindsay in Illinois, Luke's Mother in Illinois, my parents in Minnesota, staying with an old highschool friend of mine in Minnesota, visiting my grandparents, aunt & uncle and cousin in western Minnesota and South Dakota, and then a very long drive back.
On June 17th, I woke up at 4:50 on the morning of my 22nd Birthday to drive my roommate to Mayo. I even let her sleep in the car on the way over (And as someone who is NOT a morning person, you must understand the depth of love that it takes to do this). Anyways, our first appointment was with a nurse who asked us hundreds of questions. Literally, it was over 100 questions between the written and spoken part of the test. She also did a pressure point test on Poiema. After she left, Dr. Mohabbat came in to talk with us. He informed us that Poiema very very positively has Fibromyalgia. Out of 18 criteria for the 1990 test (with 11 being positive), she had 18. Out of 19 criteria for the 2010 test (with 5 being positive), she had 17. We asked God for clarity, and He came through.
I don't really know how Poiema felt in that moment, but I know for me it was almost a sense of relief, to know that Poiema had this confirmation that it wasn't in her head, and that now we could move forward with helping her regain her life.
His first question was to ask us what we knew of Fibromyalgia. After telling him, he told us that although we weren't wrong, there was much more then that going on. He also told us that over 95% of what we see online concerning Fibromyalgia is also wrong & that the most important thing we can do to help Poiema is to educate the people in her life. He then began explaining to us what it actually is, and since educating people in her life is the most important way that I can help her, I am going to attempt to explain to you what Fibromyalgia is in layman's terms.
Historically, Fibromyalgia was very probably known by names such as Rheumatism or Psychogenic Rheumatism. It was labeled as Fibromyalgia before Doctors really understood what it was. We still don't know why it happens, but it is believed to have a genetic tendency to carry down through a family. It is most commonly seen in young white women, and Dr. Mohabbat said he has yet to see a case that hasn't occurred in someone who wasn't a type A personality.
understanding Fibromyalgia is not simple, as there are multiple components to it, and we don't yet fully understand it. For starters, Fibromyalgia is a syndrome, not a disorder.
Before we go any further I need to explain some areas of the brain, the thalamus, hypothalamus, and the amygdala. These three parts of your brain work together every day to process life, give you energy, control your moods, and control your temperature.
Thalamus: translates the bodies signals. It learns to tune out normal things like a breeze but also alerts the brain to pain, pleasure, etc.
Hypothalamus: Controls your body temperature and energy levels in your body.
Amygdala: Controls your mood.
In doing research, they discovered something interesting. When you poke a normal person in the left hand, the part of their brain corresponding to the left hand (right side of the brain), lights up. In a Fibro syndrome patient, not only does the corresponding area of the right side of the brain light up, but so does 3-4 other areas of the brain not necessarily on the right side. Here's what is happening. Think of the post office at Christmas time. They are getting soooo many packages to ship off that they get overwhelmed and are understaffed. This is a Fibro patient's Thalamus. Now, imagine that the post office worker goes over to McDonalds and gets the cashier to help the post office out. This cashier is willing to help but has no idea what they're doing. Soon enough the packages are being sent to Idaho instead of Florida, and Arizona instead of Wisconsin - this is a Fibro patient's Hypothalamus and Amygdala. There are so many pain messages coming through the Thalamus that is has to attend to that the hypo and amygdala are also helping out and sending messages to the wrong place. This causes body temperature to flux, mood swings, decreased energy, lack of good sleep, and a confused brain.
But why is the thalamus getting so many pain messages that it must attend to? When you poke your finger, the nerves send a message to your spinal column saying "Ouch!" your spinal column then sends pain chemicals (Substance P & Glutamate) to your brain conveying the level and location of pain. In response your brain releases pleasure chemicals to reduce pain and stress on the body (Dopamine, Serotonin, norepinephrine, epinephrine). In a normal person the presence of the chemicals is about half and half. In a Fibro patient, the presence of the pain chemicals is 8x higher then the average person, and the presence of pleasure chemicals is greatly reduced. this means that more signals are sent in at a higher level of pain importance and that there aren't enough pleasure chemicals present to reduce the bodily stress and reaction.
There are different variations of treatment used to keep symptoms under control, but there is no cure for Fibromyalgia. Drugs used are to either reduce the level of pain chemicals in the body (like lyrica), or to increase the presence of pleasure chemicals in the body (like Cymbalta), and are often used together to help bring the body back to equilibrium. The biggest part of treatment is to learn how to manage self. Mayo clinic has a 12 part Self-management wheel that is a major part of the treatment. For this, we spent two days sitting in 12 hours of classes. The main areas of focus in this class was on clean sleep, exercise, nutrition, and moderation. The idea is to keep life at a manageable level. To not over plan, and to live healthy to help decrease symptoms.
As a supporter I learned that the worst thing I can do is to ask her how much pain she is in, or how she is feeling. Asking about the pain reminds the brain that it's in pain and causes her to be in more pain. It's my job to live life with her and be her friend, not a care taker. Letting her live a normal life is one of the best things we can do. We do have measures in to deal with bad days, but for the most part, I do my best to just be her friend.
So what does life look like? Well, Poiema is learning to eat a balanced diet, to try and not take on too much at once, and how to survive planning a wedding and being a psychology major. As friends, we're learning how to support her, be there for her, but mostly how to just be the best friends that we can be for her. Poiema and I feel super blessed that she was diagnosed so quickly (9 months, with the average diagnosis taking 5 years), and for the community that she already has around her. For the friends that make her get up and not lay around all day (That may have been me...) and for the wider family that has supported her in prayer and continues to be there for us.
Thank you for all the prayers that kept us safe on our road trip, and for the prayers that continue to surround Poiema as she learns to balance life.
Soli Deo Gloria
-Sara Jean
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