Guest Post: ME/CFS, POTS, Fibromyalgia, Hypermobility, CCI. What’s the connection and is science missing it?

Please help me offer Tracy Hagler a warm and friendly dazzle welcome! Tracy is the author of today’s guest post. A nurse with many of the same conditions as myself, Tracy and I were admiring each other’s work and decided we had to do a blog swap. In this piece, she writes about the onset of her conditions and the interconnected nature of conditions like ME/CFS, Fibromyalgia, HSD/EDS, CCI, along with some studies delving into these connections. I think you’ll enjoy it and find some similarities in our theories! After you read her post, be sure to go and give her blog a like so you can keep reading her posts! There’s a link available below, in her bio.

Without further ado, here is Tracy’s post, originally run on Unspoken Words of the Heart on 7/2/19.

ME/CFS, POTS, Fibromyalgia, Hypermobility, CCI. What’s the connection and is science missing it?

I know I have quite a few readers who battle with me/cfs, pots syndrome, fibromyalgia or Hypermobility Syndrome/EDS. Although, this is a blog to share my faith, I also want to share health updates and things that I’m learning so that we can educate one another.

The one thing I can look back for sure and see is that I’ve always had a very sensitive nervous system, I just didn’t realize it at the time. I was overly sensitive to medications and caffeine. Other people could drink several cups of coffee per day and do fine but a few sips, for me, would make me crazy. From twenty years old and on I had GERD and always reacted to gluten and sugars. I just felt bad after eating them. I just thought all of this was “normal”, at the time. I was always a type A personality. I was a nurse and I worked abnormal crazy hours (16 hour shifts, swing shifts, etc.) When I had time to sit down, well I never would. I always felt tired but wired up, if that makes any sense. I had been working as a nurse for about eight years before I became sick. The year I got sick (2017) was a busy, exhausting year for us (mentally & physically). My fiancé’s Dad passed away In February. We got married in July and my younger brother passed away in a car accident in August. In July I started having a severe pain that wrapped around my hip and into my inner thigh. I couldn’t stand, sit or walk without being in severe pain. It was actually a deep hidden inguinal hernia, with my small bowel protruding through. The hernia was pinching my inguinal and obturator nerves. (We have all heard of sciatica nerve pain, well this is the same excruciating pain only it involves different nerves.) They didn’t find out that it was a hernia until almost a year later. I was out of work and could barely do much due to the pain. (Please keep reading, I promise I am going somewhere with this story.) I had no clue what was wrong.

I went to a chiropractor for a spine adjustment because at the time no one could figure out that I had a hernia. Everyone presumed that the pain was from, possibly, a pinched nerve in my back. I go to get the adjustment and he uses an adjustment gun on my back and neck and does some deep tissue massage. He worked on me for thirty minutes. I was desperate to get back to work and wanted this severe pain to go away. What I didn’t realize is that my life was going to take a drastic change that night. I wish I could go back and change that day but I can’t. That night I awoke with my spine and neck burning hot and they felt inflamed. I was vomiting, my whole body felt feverish and I was chilling. The next day, I awoke unable to stand up. When I would stand my heart rate would shoot up. I had massive headaches in the back of my head every time I would stand for long periods of time. I couldn’t eat anything and had extreme nausea. I would lose 10 lbs over the next couple of weeks. I called the chiropractor and told him the extreme symptoms and he said I had anxiety and to come in for my second adjustment. That made me mad because it was obvious that something was severely and physically wrong with me and I only wished it was anxiety. But crazy me went back thinking he could fix what had happened. This second adjustment only worsened my condition and I ended up at my moms for a week unable to get up or eat. I thought I might die that week and no one would ever know why it happened. I truly didn’t think I would make it. By this time people probably didn’t know what to think of me. I couldn’t go back to work. I could barely make it to the bathroom. No one had ever heard of an adjustment doing this to someone. But what I have found is that it’s actually happened to a lot of people. They call it “toxic reaction”. But I never got over it.

I developed pots syndrome and months later would come to find out I had me/cfs. Over the next few months, I found that exertion would send me into severe crashes with severe symptoms. Everything was post, several days after an activity. I could see a pattern. I would wake up gasping for air at night, I had air hunger, my nail beds were cyanotic. I had severe orthostatic intolerance (pots), severe heat intolerance, blurred vision, it felt like I had the flu times ten. My spine was sore to touch. The skin on my back felt sunburned and I couldn’t stand the slightest touch. I couldn’t look at lights or phones or tv. I just laid there in complete darkness and felt close to death. I was then diagnosed with me/cfs, fibromyalgia and hypermobility (People with Hypermobility Syndrome or EDS have thinner tissues and often times have hernias at a younger age, which also helps to explain my hernia issues).

I tell this long story because it all makes sense looking back. It seemed like a perfect storm. I do feel like my body had a strong reaction to the adjustment and inflammation set up in my spine that night. It was like my body overreacted and attacked me in order to protect itself (kind of like an autoimmune response). During my sickest times, I had chronic UTI infections that antibiotics did nothing for (8 to be exact). Later they said I had Interstitial Cystitis which can be set off by mast cell activation. I started taking Benadryl nightly and it helped decrease the pain of the Interstitial Cystitis. They checked me for mast cell activation and it was negative but at the time I was taking a daily antihistamine. So I’m thinking that might be why it was negative.

This illness definitely originates, in my opinion, in the spine, brain stem and at the base of the skull. I always feel so much pressure and swelling there especially during a crash. I love to write and sometimes just the effort required for that will cause a crash. This really is a cruel disease with severe suffering (which I am happy to say, has only made me a stronger person). I keep putting my story out there because I’m a minority where my me/cfs was caused by something other than a virus. Although, I have heard of spine adjustments triggering or reactivating viruses in the body. I was checked for EBV and they just said it wasn’t currently active but I had been exposed to it in the past. I also have heard of people getting sick from deep tissue massages because it releases toxins from the tissues into the body. Studies are also finding dorsal root ganglionitis in the brains and spines of those suffering with severe me/cfs, postmortem.

I’m not exactly sure what happened to me that day. I’ve got a few theories. However, the one thing I do know is we all have the same illness. Where science has gotten it wrong for so long, they seem to be on the right track, for the moment at least. The recent stories of people recovering from Me/cfs and Pots after having craniocervical instability surgery (a surgery of the neck) has left me with a lot of questions. Especially, since my me/cfs was triggered by a neck adjustment. It has been found that people with hypermobility or EDS can have laxity in the ligaments that hold the skull up causing instability and pressure on the brain stem therefore causing POTS, ME/CFS and Fibromyalgia. There have been several people that have had CCI surgery done and all their pots and me/cfs symptoms have disappeared. Jennifer Brea, the producer of the Netflix documentary film “Unrest”, also had severe Pots and Me/cfs and is now in a complete remission after CCI surgery. Her Me/cfs was triggered by a virus/infection.

In my case, was I a ticking time bomb? Did it just take one or two more millimeters of instability at the base of my skull to cause me to develop Me/cfs, Pots and fibromyalgia? Or, did my spine set up inflammation that led to dorsal root ganglionitis? I may never know but I will never give up hope that I WILL someday get better. My trigger was a chiropractic adjustment. Your trigger may have been a virus, a concussion or head trauma. All the science behind this is kind of intriguing and it starts to come together after studying on it for a while. It’s like five separate illnesses operating under one specific cause. If we keep telling our stories, hopefully it will help science fit the pieces of the puzzle together and they can find out the cause and develop a cure. Most importantly if you have this illness, don’t give up, there’s still hope. We have a God who is greater than science. Let’s continue to support and lift one another up in prayer!

(This is in no way medical advice and should only be taken as part of my story and personal opinions.)

Resources


Tracy Hagler is a nurse who was diagnosed with ME/CFS, POTS, Fibromyalgia and Hypermobility Syndrome within the past two years.  She started writing a  blog where women can share faith, hope and encouragement. She has become an advocate for theses conditions and shares information and education about them. She also writes on mental health and her Christian Faith. You can check out her blog at Unspoken Words of the Heart.


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In this guest post, Tracey Hagler explores the connections between ME/CFS, POTS, Fibromyalgia, CCI, and Hypermobillity Spectrum Disorders. She talks about the progression and diagnoses of her own conditions, some compelling research and more to put together this thought-provoking post about the interrelated nature of these illnesses.
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8 thoughts on “Guest Post: ME/CFS, POTS, Fibromyalgia, Hypermobility, CCI. What’s the connection and is science missing it?

  1. Wow, parts of Tracy’s story sound similar to mine. I was first diagnosed with ME/CFS, but that was later switched to POTS, MCAD, hypermobility, and now small fiber neuropathy. I find it so interesting to read other’s journeys with their symptoms and diagnosis because there seems to be a common theme that we were all type-A very active and ambitious people. Which makes it that much more frustrating when we’re misdiagnosed as anxious or lazy. I had just finished law school when my POTS symptoms started, and absolutely hated just sitting at home. I still hate it, but have had to adjust due to symptoms.

    Anyway, thanks to Tracy for sharing her story. I look forward to checking out her blog!

    Liked by 2 people

    1. Lindsay, thank you for reading my story! Sometimes it’s good to just to be able to tell it. I can only imagine how much hard work you put in to Law School. I had the same let down after putting years into nursing school. The type A in us wants to continue going but our bodies won’t let us. It’s the hardest part. In order to stay at a baseline of health, we have to do nothing which makes us seem lazy. It’s pure torture! And yes, please do visit my site. I just posted a blog entry today about, “When our dreams for our life turn out different then what we envisioned”. Which is something I think we all, on here, can relate to. Thanks for your comment and the warm welcome!

      Liked by 2 people

    2. Hey Lyndsay, I guess we’re all practically sisters, because my story is also very similar. Started out first with CKD toward the end of undergrad and a Fibro dx almost 5 years later, then my CKD went into remission, my back went out from herniated discs and I developed even worse fatigue and intractable migraine and was given the ME/CFS dx. Then POTS, then finally hEDS, MCAS, and Dystonia with a little gastroparesis thrown in there for good measure of course. I was in grad school working toward a Ph.D in women, gender and sexuality on a Presidential fellowship when my fatigue got be too much to deal. Total type A and very ambitious. I still got a masters degree, on my back. I had every intention of being a kick ass college professor and writer. That’s why ME/CFS was once labled the “Yuppy disease,” I believe. There’s supposedly a disparate number of professionals with it, and I wouldn’t be surprised by that at all if it were true. I have no doubt stress was a huge contributor to exacerbation of what were very mild symptoms as a teen. I think it’s hardest of all for us to come to find acceptance. Took me about 8 years really and I still sometimes struggle. Big hugs! I hope you’re finding other things to replace those bit dreams with. It’s really helped me so much to have finally been able to get back to my creative writing and do my blog and some freelance. xx

      Liked by 1 person

  2. It’s comforting when you meet someone else in the online world going through something similar, and I think a blog swap was a brilliant idea – welcome, Tracy! I’m just so sorry for everything you’ve got to go through, it sounds like it’s been a rough journey and I can understand you wishing you could go back to that day with the chiropractor. It’s hard to look back and think of the things we wish we could have done differently or wonder what other path things could have taken. But moving on from that is what takes true strength, so thank you for sharing some of your story with us  ♥
    Caz xx

    Liked by 1 person

    1. Hi Caz!
      Thank you so much for the warm welcome and your kind words! I think for those of us who have this illness, we get it! Your absolutely right! We can’t go back and change the past, we have to move forward with the best attitude possible with what we are dealing with. The whole reason I started blogging was because after becoming sick, I realized how the chronic illness community is so misunderstood. Many of us are isolated at home and are no longer able to get out and interact with people or even with our church family. On my blog, I write about my illness but I write a lot about my faith as well. I realize that some of us are housebound and although it’s online, my intentions are to build community and friendships so we all don’t feel so alone on this chronic illness journey! Please feel free to hop on over to my site and see if you can find something that encourages you. I would love to have you there as well! Thanks again for kind and wise words!!
      Hugs, Tracy Hagler

      Liked by 2 people

  3. My ME/CFS symptoms began after a stroke I suffered in 2009. I was told I would recover and my life would get back to normal. That never happened and in addition to ME I have long list of other diagnoses, including epilepsy and enchephalolamacia.

    My theory is that ME/CFS is always a misdiagnosis. It not a disease or syndrome but a SYMPTOM of something else. For each who has been diagnosed, the underlying cause is different. No one seems to care to find out what illnesses it is a symptom of. This is frightening. For some of us it could be a symptom of something terminal which we are not yet aware of.

    Liked by 1 person

    1. Michelle,
      I’m truly sorry to hear about all that you are going through! I think you are absolutely right. I think me/cfs can have many different underlying causes. It is a symptom, as is pots and Fibro. And you are right, no one wants to figure out the cause, they only want to treat and cover up the symptoms. In my opinion, that’s why people recover from me/cfs in so many different ways. For some it’s CCI surgery for others it may be a ANS rewiring program, for others it just goes away on its own. I think that’s why they have never been able to completely pin it to a virus. Because many of us didn’t get me/cfs from a virus. I think the key is advocating for ourselves. Because, we the patient, truly are the only ones who know our own bodies and we know when and how our unique illness started. Thank you so much for your comment. It gives others something to to think about with their own struggle and illness. Once again, thank you for your comment!

      Hugs, Tracy Hagler

      Like

    2. Hi Michelle!
      I’m truly sorry to hear about all that you are going through. I absolutely agree with you. I think me/cfs, POTS and Fibro are all symptoms of a greater cause. I also think our causes are all different. That’s why they’ve never been able to pin point the cause to a virus because everyone is getting me/cfs through all sorts of ways. Some people recover from CCI surgery, others recover from ANS rewiring, yet others never recover. I think the patient is the one that has the most knowledge about their own body. They know the exact date when their illness started. You’re right, not many providers want to help find the cause, and many times we are given medications to cover up the symptoms. This is super frustrating. We ultimately have to be our own advocate and keep pushing until we find the one doctor who will listen. Thanks for your comment. Sharing your thoughts and story will help others! ❤️

      Liked by 1 person

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