Diagnosis #1….

Happy second week of February everyone!  Hopefully we’re heading towards some nicer spring weather soon.  As I mentioned in my last post, this week I will be discussing myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), or my internist referred to it as neuro-immune dysfunction syndrome (NIDS).  This was the first chronic condition that I was diagnosed with.  I would be lying if I said I didn’t burst into tears in that internist’s office.  I had gone in prepared with lists and data all about me and my ongoing symptoms, she took one look at me, one look at my notes and she said “I’ll have to do a few tests but from what I see here, you have chronic fatigue syndrome.”  I was also diagnosed with chronic non-cancer pain (CNCP) at the same time.  She was extremely knowledgeable, very firm on what I would need to do as her patient and very empathetic to the fact that I had been suffering for MONTHS.  Now, if you’re a little bit like me you might be thinking myalgic encepho…what, chronic fatigue syndrome? Well everyone gets tired, and you’re right, everyone does get tired but the difference is, you can go take a nap and more than likely will wake up feeling better and with more energy.  I, on the other hand, cannot just go for a nap and wake up feeling better, the fatigue never goes away.

In order for a doctor to diagnose ME/CFS/NIDS he or she has to rule out every other possibility of what could be causing your ongoing symptoms (ex. cancer, anemia, hyper/hypothyroidism, etc.).  Then they look at the “key elements” of diagnosis and according to the Institute of Health, they are: “an inability to engage in pre-illness levels of activity that persists for at least six months, accompanied by fatigue, the worsening of symptoms after any type of exertion (physical, mental or emotional) this symptom, post-exertional malaise, is seen as key.  Also, unrefreshing sleep, cognitive impairment, and the inability to stand upright for other than short periods of time, a symptom known as orthostatic intolerance.”1  I met all of the criteria, and then some! NIDS has a lot of different symptoms; many of them are vague and can be caused by a multitude of things.  My main (most troubling) symptoms were/are: swollen and tender lymph nodes, sore throat, recurrent flu like symptoms, abdominal pain and nausea, weakness and extreme malaise, painful muscles, joints and nerves, cognitive impairment, disordered sleep, perceptual and sensory disturbances, POTS, severe headaches, mental fatigue, post exertional malaise, loss of previous levels of physical and mental functioning, and worsening of symptoms with stress.

So there’s a diagnosis, now what? Good question and here’s the problem; there are no specific treatments or cures for ME/CFS/NIDS.  There are medications for symptom control but with that you’re not treating the heart of the issue.  I was given a book on NIDS that was written by an infectious disease doctor who also quoted research from my internist herself! I was told to keep a daily diary of everything I did, including approximate length of time for each task then rate each day on a scale of 1-10, this was all explained in the book, (one being completely bed bound and ten being absolutely perfect and carrying on with all regular life, and career/social obligations).  Ok, not too hard, so each week I would make up my columns and track what I was doing, etc. but I was never higher than a three on the scale (which is awful by the way).  I would go back to the internist every few months, she would review my diary, give me suggestions and then we would discuss medications.  In all honesty, I really wasn’t able to do a lot so my activity diary was short, I would show her and she would tell me that I was still doing too much! I was told to try harder to not do anything, I was not to watch TV (as this is still causing you to focus), I was told not to study for school, not to cook dinner, not to watch TV in the evening when relaxing and spending time with my boyfriend and many more restrictions.  Everyone’s dream right? Your doctor actually prescribed doing nothing! Except that it’s not fun or relaxing or a vacation, it’s feeling trapped, wanting to do things around the house but not being able too, and it’s boring! Now don’t get me wrong, for the first little while I was so exhausted that I would sleep in intervals throughout the entire day, I could barely get up to take Opie outside.  So, time went by and I continued tracking with my diary, following up with my internist every 2-3 months and I was not seeing any improvement.

At my last appointment with my internist, prior to my hospital admission where I spent a week as an inpatient at Ross Memorial, I talked a lot about POTS and my GI issues.  I had seen a cardiologist at St. Mike’s in Toronto during February 2016 who had already confirmed my suspicion of POTS.  So my internist prescribed a probiotic and Florinef (I’ll talk more about this in my post regarding POTS) and sent me home with instructions to see her in May 2016.  Unfortunately, before that could happen I was admitted to hospital with severe dehydration due to ongoing GI issues.  Since I was admitted at the hospital here in our town, I called to cancel and reschedule my appointment with the internist and was politely informed by her receptionist that she was retiring and that her last day was 3 days away!  So here I am, alone in the hospital, hooked up to IV’s and covered in bruises because my IV kept failing because my veins were non-existent.  I was receiving pain medication IV and then subcutaneously with oral medications as well and I’ve now just found out that the only specialist who was my main care provider other than my PCP was gone…no warning whatsoever, just gone.  Thankfully, my amazing PCP showed up at that exact moment and I told her what I had just found out and she was just as shocked, she had not received any notice from my internist either.  She reassured me that all would be okay and she would do whatever necessary to get me a new internist.  It was during this hospital admission that I was assigned to not only my new internist (who is located right in town here and is an absolute genius) but also a GI specialist (who is also located right in town).

I was inpatient at the hospital for an entire week, they discovered that the Florinef I had been put on to manage my POTS had actually caused severe hypertension, and really wasn’t controlling my heart rate at all.  It was also during this admission that the ball really got rolling with my GI problems and the IBD and gastroparesis diagnoses started to form.  It also became a bit like a which came first scenario, the chicken or the egg? Was I suffering from my cardiac and GI issues for so long and that’s what caused the NIDS? Or did I have NIDS and then the rest of me started going haywire?  So, I went from one diagnosis to two, then three and so on.  In some ways I can see the positives of what felt like chaos.  I received my first diagnosis that validated what I had been suffering with for months, I began learning of other diagnoses and how they were all intertwined.  Plus, as wonderful as she was, it was a blessing in disguise that my internist retired because when I say my new internist is a genius, I 100% mean it!

I’ve attached a couple of articles that help to explain NIDS and there is some more in-depth information in relation to what they think may be the cause of this syndrome, why certain people get it and others don’t and so much more! Another topic that is big in the NIDS world right now is a name change.  Think about the most recognised name of this syndrome, chronic fatigue syndrome, it’s hard to have anyone, let alone health professionals take you seriously when you’re basically telling them “Hi! I’m really, really tired.”  Even though NIDS/CFS/ME is about so, so much more, it is still laughed at in the medical world, seen as a “mental” diagnosis or whining rather than a serious condition that can actually alter a persons life quite significantly which again leads us to the conclusion that we NEED more and more awareness to help educate others to help them understand us and what we’re all about.

Thanks again for reading, next week I’ll talk about postural orthostatic tachycardia syndrome (POTS).  It has been the craziest of my diagnoses and I have learned so much from my research and own experiences.  I can’t wait to share it all with you guys!

Wishing You All Health & Happiness,

Lyndsay

 

References

1Andre Picard. (2015, February 17). Time to take chronic fatigue seriously. Retrieved from http://www.theglobeandmail.com/opinion/time-to-take-chronic-fatigue-seriously/article23023462/

http://www.nids.net/_page_id=17/

https://www.cdc.gov/cfs/

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2 thoughts on “Diagnosis #1….

  1. I am so glad that you are doing this Lynds! Not only will it be therapeutic for you to tell your story, you will help others who may need validation and someone who understands their struggles! 😇❤

    Liked by 1 person

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