Wasn’t sure where to post this, so I figured I’d put it in “General Symptoms”.
I was recently diagnosed with CFS, though, it was done very half-assed with a “Yep...sounds like all your symptoms fit. You have CFS.” Mind you...I have had routine labs, a thyroid panel, and a brain MRI showing normal results. Nothing more. So, not sure how much I buy into the diagnosis. Don’t get me wrong, I’m very much leaning toward it and I agree that my symptoms fit. I’m just not willing to solely base that on, “it looks like a duck and walks like a duck...so it must be a duck” criteria.
Anyway...here’s a short synopsis of my journey and then my question:
This all started one year ago next week. Started with a minor ear infection and then progressed over a couple months to lightheadedness, dizziness, neck/shoulder pain, blurred vision, near faint feeling/blackouts, sleep issues, when coughing or singing (really anything involving triggering the vagus nerve), tachycardia, general malaise, brain fog, flu like symptoms, etc. Then...it all disappeared for about 3 months. I felt good. Didn’t seem to notice any symptoms, possibly reduced to minimal.
That was short lived. After three months, came the return of all those symptoms plus muscle weakness (especially in my legs), muscle fatigue, night sweats, feeling of flushing from my neck up into my face, low grade fevers, feeling lethargic. I specifically remember walking up this very small incline in the parking lot to get to my work office and feeling like it was the tallest hill I’d ever climbed. My legs felt so heavy and uncooperative. Just felt blah...
Fast forward to now. I’ve had another small relief from these symptoms (about 6 weeks)...not including now (just in the last week- cross my fingers this will last a while). Each time I have relapsed, I seem to get all my old symptoms, plus obtain new symptoms. So far, added to the list above: Muscle fasciculations, areas of facial numbness on right side, numbness and tingling in my L leg and R forearm, issues with TMJ and Pyriformis Syndrome, shortness of breath, major hair loss, etc.
Here comes the question: I had a flu shot in October. Twenty four hours after, I noticed my neck felt heavier/weaker than usual. It almost felt like my head was a bobble head. I could feel myself catching it when it would release and fall forward (picture someone who is falling asleep sitting up and they suddenly wake up after they catch their head slightly falling forward- like that). I especially noticed it in the seated position. I didn’t notice it as much when I was upright and walking around. The next couple days, I felt aches and pains all over...the flu shot gave me the flu...no doubt. I thought this neck thing was due to that...but it’s been over a month and although, I have good days where I feel like it’s not really noticeable and bad days where it is...it definitely hasn’t subsided. In fact, when I lay my head down to try and sleep, it feels like my neck muscles are in a rapid repetition of tensing up and relaxing involuntarily. It’s not painful, but it does make it difficult to sleep. Muscle relaxants help, but it’s an oddity nonetheless. I’ve had neck and shoulder pain with headaches in the back of the head for the last year, but this is new. Anyone have this?!!!
Thanks in advance...especially if you made it through this whole post.
I was recently diagnosed with CFS, though, it was done very half-assed with a “Yep...sounds like all your symptoms fit. You have CFS.” Mind you...I have had routine labs, a thyroid panel, and a brain MRI showing normal results. Nothing more. So, not sure how much I buy into the diagnosis. Don’t get me wrong, I’m very much leaning toward it and I agree that my symptoms fit. I’m just not willing to solely base that on, “it looks like a duck and walks like a duck...so it must be a duck” criteria.
Anyway...here’s a short synopsis of my journey and then my question:
This all started one year ago next week. Started with a minor ear infection and then progressed over a couple months to lightheadedness, dizziness, neck/shoulder pain, blurred vision, near faint feeling/blackouts, sleep issues, when coughing or singing (really anything involving triggering the vagus nerve), tachycardia, general malaise, brain fog, flu like symptoms, etc. Then...it all disappeared for about 3 months. I felt good. Didn’t seem to notice any symptoms, possibly reduced to minimal.
That was short lived. After three months, came the return of all those symptoms plus muscle weakness (especially in my legs), muscle fatigue, night sweats, feeling of flushing from my neck up into my face, low grade fevers, feeling lethargic. I specifically remember walking up this very small incline in the parking lot to get to my work office and feeling like it was the tallest hill I’d ever climbed. My legs felt so heavy and uncooperative. Just felt blah...
Fast forward to now. I’ve had another small relief from these symptoms (about 6 weeks)...not including now (just in the last week- cross my fingers this will last a while). Each time I have relapsed, I seem to get all my old symptoms, plus obtain new symptoms. So far, added to the list above: Muscle fasciculations, areas of facial numbness on right side, numbness and tingling in my L leg and R forearm, issues with TMJ and Pyriformis Syndrome, shortness of breath, major hair loss, etc.
Here comes the question: I had a flu shot in October. Twenty four hours after, I noticed my neck felt heavier/weaker than usual. It almost felt like my head was a bobble head. I could feel myself catching it when it would release and fall forward (picture someone who is falling asleep sitting up and they suddenly wake up after they catch their head slightly falling forward- like that). I especially noticed it in the seated position. I didn’t notice it as much when I was upright and walking around. The next couple days, I felt aches and pains all over...the flu shot gave me the flu...no doubt. I thought this neck thing was due to that...but it’s been over a month and although, I have good days where I feel like it’s not really noticeable and bad days where it is...it definitely hasn’t subsided. In fact, when I lay my head down to try and sleep, it feels like my neck muscles are in a rapid repetition of tensing up and relaxing involuntarily. It’s not painful, but it does make it difficult to sleep. Muscle relaxants help, but it’s an oddity nonetheless. I’ve had neck and shoulder pain with headaches in the back of the head for the last year, but this is new. Anyone have this?!!!
Thanks in advance...especially if you made it through this whole post.
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