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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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Neck Strengthening Exercises

These resistance exercises for the neck are so simple, I had a tough time conveying the concept. Basically, you’re going to push against your head in order to create resistance; something for your neck to have to fight against. You can’t really see it in the video, because you’re not supposed to move your head, you just meet your hand with equal resistance. It should remain in basically the same position as you resist the force of your hand. You want to do these exercises coming from all four directions, both sides, front and back. Keep your hand position toward the top of the skull on each side. Your hand should be positioned on the center of your forehead when facing the front, so the pressure is high on your skull, but well balanced. On the sides of the head, your hands should be slightly in front of and above your ears. In the back, it should be a mirror of the positioning on your forehead.  It doesn’t really matter if you do a whole set before moving to another side or one repetition; just do what’s most comfortable for you and gets you in a good rhythm. They will help you to gradually build up the muscles in your neck. You can hold them beginning at a count of three as I do in this video and work your way up to a longer hold and more repetitions. You should not experience any pain with this exercise. If you do, you may be exerting too much pressure and need to ease up. You may also benefit from more magnesium in your diet and/or myofascial therapy. if you have persistently sore muscles.

I look at these exercises as a way to maintain a healthy neck. If you already have neck issues that you’re struggling with, seek a therapist and imagining, if necessary. I’ve gone through five or six different head and neck therapies and there’s one I felt was most effective, but of course I’ve lost all the information I had on it and haven’t seen the practitioner for years. I had terrible neck pain for the longest time, but never could quite determine how much was attributed to coat hanger headaches and how much was the damage to my cervical spine caused by my degenerative disc disease. I do have instability in my neck from a couple of herniated discs, but once I got my POTS under control and had been working on  my head, neck and shoulders by fasciablasting them for about a year, my neck pain resolved, with the exception of the occasional twinge.

The important things to remember during this exercise is that you maintain good posture while doing it, try not to hyper extend or overexert your neck by pushing too hard or doing too many reps, and be sure to keep your movements slow, measured and steady. Jerking movements to the neck can be damaging and of course that’s exactly what we want to avoid. Since you can vary the amount of pressure, number of repetitions and length of time you hold the movement, it’s easy to increase the challenge of this exercise. Finally, in my opinion these exercises are safer than flexion and extension exercises for zebras, which primarily involve stretching and could damage our already fragile collagen.

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Chronic Head Pain in EDS

This post was recently reviewed for accuracy and updated on 4/10/19


brain-pain-centerHead pain is an incredibly common problem for people with Ehlers-Danlos Syndrome. I have struggled with head pain for so many years that I found it almost impossible to accurately identify where it hurt whenever I was examined by a neurologist. My head hurt everywhere, all the time, though I would often experience sharp, shooting pain or more focused pain in certain areas at times.

It wasn’t until I began to resolve some of my issues that I was able to begin to understand the different types of headaches I was experiencing and their possible causes. In large part, these revelations came on the heels of major dietary changes, written about in this article, and fascia treatments, which I talk about here and will be sharing some more about in this article, today.

To the best of my knowledge, most head pain in relation to EDS occurs because of Chiari malformation (CM), Craniocervical Instability(CCI), Temporomandibular Joint Disorder (TMJD), or another connective tissue/joint issue that causes neuralgia (such as occipital neuralgia,  Mast Cell Activation Syndrome (MCAS) or another allergy or intolerance issue, orthostatic intolerance (OI), or medications. The more of these conditions you have, the harder it is to sus out what’s going on and it’s very important to address each and every problem in order to address your pain.

First, if you aren’t familiar with each of these conditions and you both have EDS and suffer from chronic head pain, get familiar with them now. They can cause a wide variety of symptoms that can wreak havoc on your health and well-being and if you have any one of them, depending on the severity, some may require surgical intervention, physical therapy and/or bracing. Also, in some cases, one condition can cause another, such as CCI or CM can lead to developing OI. Also, any one of the connective tissue issues like CCI, CM or TMJD can lead to trigeminal or occipital neuralgia; chronic nerve pain in the head and face. Of course it doesn’t usually stop there, causing problems with the neck, shouders, arms, chest and back. If severe enough, it can even cause digestive and whole body issues.  There is no end to the problems CCI and CM can cause because of its ability to alter the autonomic system.

I’ve gone through many different therapies on my neck, some with varying degrees of success, but none completely effective. Laying in bed seemed the only thing that provided me relief from the worst of my head pain, my glare and sound sensitivity, and even that was no guarantee.

Then I changed my diet and finally started eating chemical-free foods and figured out to what I’m allergic and intolerant and that I probably have MCAS and eliminated everything that was triggering me that I could. Yet more of my head pain cleared, along with many of my lifelong chronic sinus and respiratory problems.

I finally got a vascular specialist who put me first on midodrine and then florinef to at last get my POTS well controlled while simultaneously weening myself from some of the drugs I was taking to prevent the constant muscle spasms, cramps, and joint pain.  Again, this meant less head pain.

But no matter what I did, I couldn’t get these vice like tension headaches to go away. These are headaches toward the back of my head and along the sides. They cause my head to feel heavy and my neck always tired and tight. I couldn’t wait to lay down.

Over the last few months of doing the migraine series with the FasciaBlaster not only did the heaviness of my head and my neck pain begin to subside, so did my head pain, little by little, until one day I actually had a completely head pain free day and then another and another.

At first, I thought I had developed a cerebral-spinal fluid(CFS) leak and it was taking the pressure off of my overtaxed brain, but after several weeks with  many pain-free days mixed with some that weren’t so lucky, I have come to see that it was the FasciaBlaster migraine series that finally did the trick. I’m not honestly sure how long I’ve been doing the migraine series with dedication, so I can’t give you a ballpark on how long it might take you to get relief. Besides we’re all different. I can say that moving toward doing my head every 1-2 days has brought further improvements and now that they are mostly under control, I can do the entire migraine series once a week, my head twice a week and I’m pretty much good to go.

If I do experience any break through neuralgia, I simply get out my blaster, blast my head (dry works just fine for me) for 5 minutes and it clears up the headache completely about 90% of the time. The rest of the time, it’s brought the pain to a low enough level that I still don’t feel the need to take a triptan.

This may sound a bit odd, but one of the benefits to having those unending migraines gone is that I can now tell when something else is giving me a headache, making it much easier to identify when something is aggravating my MCAS or POTS. Before it was anyone’s guess as to whether I was sitting up too long, if I ate the wrong thing, if some scent might be a problem (I’m allergic to most synthetic scents), or if my blood pressure had dropped too low. Now, I can  more easily monitor the rest of my health and that’s very valuable to figuring out how to control and improve all of my comorbid conditions.

Identifying Head Pain and How to Treat It

In order to help you identify the type of head pain you’re experiencing, here’s a few tips about mine.

CCI & CM

Feels like: dull to sharp burning pain in the neck, back of the head, sides (around the ears) and to a lesser extent in the temples. While the pain radiates from the neck and the back of the head, it extends up toward the face, but tends to stop there, even if the numbness doesn’t. It can however, create tension in the entire head and neck area, so they can begin to hurt and these areas benefit from massage or fascia work. They can be accompanied by visual auras, light/glare sensitivity, sound sensitivity, nausea/vomiting and mood changes. I am told CM feels much the same way and I cannot guarantee that I have CCI as I haven’t found a doctor to properly test me, but I certainly have all the symptoms.

Treatments: Triptans work some of the time for these migraines, but you need a prescription. If a triptan doesn’t work, you can add a benedryl. I don’t know why it works exactly, but it helps. For prevention and treatment, the fasciablaster and neck therapy is the best thing I’ve found yet. There are also surgeries, preventative medications and treatments such as botox, topamax, Aimovig, Verapamil and many others that you could discuss with your physician, but healing the fascia and rebuilding the muscle to support your head and neck as well as possible should definitely be a first line defense. Once the surgeries begin there’s no going back and while it can improve some symptoms, it can make others worse. These are incredibly difficult conditions to treat.  This is why my primary recommendation is a program like the FasciaBlaster migraine series or another route of physical therapy.

Unfortunately, if you have a Chiari malformation or Cerebrospinal fluid leak, fasciablasting probably isn’t going to resolve these or high pressure problems related to these conditions and Ideopathic Intracranial hypertension. I’m not going to cover chiari in this article. It’s simply too complex to cover in a brief article like this one and I don’t have enough experience with it to offer any personal insights.

MCAS/Allergy

Feels like: all over/nebulous pain, dull ache. If respiratory in nature, it can bring on nasal congestion and pain in the sinuses, but often, it’s just a general ache. Usually, if it’s related to allergies/MCAS, it’s accompanied by joint pain, digestive issues such as bloating, inflammation and diarrhea.

Treatments: MCAS is a complex disorder and treating the resulting headache really isn’t enough, but if you find yourself in a flare with a headache, try some zyrtec, zantac, and benedryl with either some advil, tylenol or aspirin, depending on your tolerance. For a full list of medicines used to treat mast cell activation disorders, click here.

Dysautonomia

Feels like: Sharp shooting pain radiating from the top of the skull. I still get these from heat intolerance, even though I have my POTS well in hand. They hurt and they take a long time to resolve. Longterm untreated dysautonomia can also cause what is known as coat hanger headaches, as they cause the neck and shoulders to hurt as well as the head.

Treatments: I wish I had a fancy trick for these, but I don’t. You need plenty of electrolytes and to cool your head off. My best recommendation is a cold shower  and a liter of ice cold ORS followed up by a nap.

Of course the best way to treat any and all of these conditions is to know your enemy and proactively treat them. In other words, if you know you have POTS and heat intolerance, stay on a good treatment plan with your doctor, do your best to stay out of the sun and drink plenty of electrolytes when you know you’re going to be out. Part of being proactive is also making sure you have everything you need when you leave the house; medications, ORS packets, assistance devices, etc. It’s a pain in the ass, but waiting an hour to take a triptan can mean the difference between a close brush with a migraine and 3 days of trying to get them back under control.