Gingergrrl
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Sorry about that. Perhaps it was in Rowe’s video? There is a case study where someone’s brain actually descends from the top of their skull by what looks like an inch. Not everyone has a headache, but it is a common symptom. Regardless, with *any* symptom that is positional, one should strongly suspect IMHO a structural cause.
No worries and it was an interesting video! I wanted to update you (and others following this thread) that after I said that I do not get headaches, I've had a severe headache the last 2 days b/c my neck pain got much worse. I normally have PT every Sat morning but I had to cancel it this morning b/c my neck pain was so severe (even though ironically, my PT would have worked on my neck and it could have helped ).
My neck pain has two main causes: a major car accident in 2006 when my car flipped upside down and I had whiplash, and then an arm injury to my right triceps tendon in 2010 (from Levaquin). I could not use my right arm so my right shoulder, and right side of my neck, had to compensate for the arm. It's often difficult for me to tell if the arm pain triggers the neck pain or vice versa. But the last couple days, the neck pain is excruciating and is so bad that it caused a headache. I am taking pain pills, using Salonpas (pain patches), and lying down with ice packs on my neck and literally nothing is helping.
This is the first time I am wondering about CCI and I have a phone consult w/my doctor on Tues (for other reasons) and plan to ask him if he thinks CCI could be relevant to my case. He is the same doctor who treats Jeff and is very familiar w/this issue. I am 100% certain that autoimmunity is at the core of my illness (since I had 11 autoantibodies and high dose IVIG and Rituximab put me into remission) but like you said very eloquently, most of us have multiple problems going on and autoimmunity does not exclude me from having a severe neck injury from my car accident that is currently getting worse (possibly b/c I am more active now and doing PT & Pilates)?
The only position that truly improves the neck pain is bending my neck forward so my chin touches my chest to stretch out the back of my neck. Does this match with CCI or would it be the exact opposite? I am a novice with understanding this even though I saw Jeff go through his whole nightmare experience (and amazing outcome).
Now this can occur no matter what position I am in if I am not wearing my collar. For the first several months, it was only while laying down. It’s still much, much worse laying down simply because when my head is resting on a pillow, I am putting direct pressure on it, causing to slide out of place (relative to the first vertebra). For a period of time, as my symptoms worsened but before I started using a thoracic extension for my brace, I had to sleep sitting up.
I don't have a collar and when I tried one (many years ago) it did not help me but I have no idea how it might be now. For me, the neck pain improves when lying down with ice on the back of my neck but it is only a partial improvement. Yesterday the pain was a 10/10 and I couldn't type on PR at all (or do much of anything) and right now I'd say it's about an 8/10 and I am typing this b/c it is important but then going to lie down w/ice on my neck again.
Neither do I. At least, I didn’t pre-thyroid surgery (at least, not since my onset). After the surgery, I’d only get the classic occipital + neck pain when moving my neck into positions that deliberately provoked symptoms for exams or imaging. But headache not a major sx for me.
Thx for clarifying that headache was not a major symptom for you (and it was not for me either until the last few days when my neck pain got so much worse).
Neither do I and neither does Jeff (at least by current diagnostic criteria).
Thx and I am definitely NOT hypermobile whatsoever. I don't have any joints that sublax and I am not flexible by any standard. I don't even think my neck is flexible vs. that it has stenosis and radiculopathy down my arm. It is killing me at the moment where I could from the neck pain
This is a clue that you have another explanation for your symptoms, to be sure. However, small fibre neuropathy is extremely common in ME, EDS, fibro, etc. (for which IVIG is a treatment). I don’t think these things are mutually exclusive. The breathing problems Jeff and I had are not a common symptom of CCI/AAI.
I definitely 100% have autoimmunity and the treatments put my core symptoms of profound muscle weakness, breathing and diaphragm weakness, POTS, and MCAS into remission. It is unclear if I had small fiber neuropathy (but I did have abnormal QSART which showed some neuropathy). We stopped testing once I had eleven auto-antibodies including the LEMS autoantibody. This is why I never felt that my car accident/neck pain was related to my core illness (and it still might not be) but I am really wondering now and don't want to miss something important.
The only way you can know for sure is if you do the imaging and consult with a surgeon. Neck pain can have many causes and if you have chronic neck pain, you should definitely get cervical imaging and consult with spine surgeons knowledgeable in different cervical conditions (not just CCI). No one can tell if you have CCI just from your case notes. You need to be physically examined and imaged.
I am going to ask my doctor if he thinks I should do imaging of my neck and can do it as long as the MRI does not require contrast dye (which I am allergic to). My PT had said that an x-ray of my neck would not be useful b/c she already knows that I have cervical stenosis, cervical radiculopathy, and arthritic changes to my neck and it would not change her treatment plan. But now I am wondering if it would be worth it (an x-ray or MRI?) after all.
If you are in full remission, I wouldn’t worry about this *too* much. But if you have chronic neck pain, I’d try to find out why.
I am close to what I would call full remission but have no idea if it is temporary or permanent b/c I am still doing one of the treatments. And right now w/this level of neck pain, it is hard to think straight .
No, headaches are not required. (They also aren’t a required symptom of spinal fluid leaks.) I don’t think you should consider anything to be a required symptom just because it’s on a symptom list. My impression is that required symptoms are generally only a part of diagnostic criteria that are syndromes, i.e., where the pathology is unknown. With most conditions, no symptom is present in 100% of cases.
This has always been my feeling (that nothing is absolutely a "required" symptom of any diagnosis b/c we are all such "unique snowflakes" to use a term from a PR friend of mine). I was a near perfect match for MCAS with 35+ out of 50 symptoms listed by the Masto Society, and also a pretty classic case of POTS, but on other things I was not a good match (although I am a much closer match to LEMS than I was to ME/CFS).
I never had shortness of breath. I stopped breathing full stop. I don’t know if you have CCI but that isn’t the most important thing. What is important is that you had an accident and now have chronic neck pain. There can be many structural reasons for this, and you should try to figure out why.
Thank you for clarifying and I never stopped breathing full stop like you did and that must have been incredibly scary! I had profound shortness of breath and could not inhale a full breath to my diaphragm (at worst only to my shoulders) and often felt like a tight belt or vice was around my chest and I failed every spirometry test due to muscle weakness. I also had severe POTS. This is all gone now and I am beyond grateful but I am now so curious if the neck pain related to my overall illness or is completely unrelated (as I had assumed for all of these years).
Thank you again for sharing your story and it is going to help a lot of people.
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