all4family Posted July 8, 2009 Report Share Posted July 8, 2009 Hi Everyone,I am just trying to find out how many people here have neck problems, and if any of you have noticed any relationship between the neck problems, and your POTS symptoms. I am sure a lot of you know I was doing really well, and even redoing my house, when I started to go back down hill again. The thing is I was doing work on my celing that involved sanding overhead, and esentially reaching overhead. My neck started to hurt worse then usual. (I had side to side whiplash interestingly enough right before I got sick) I always have a knotted left shoulder. A doctor who once looked at it said she specialized in sports injuries, and had never seen a shoulder as badly knotted up as mine. Well anyways My neck kept getting worse, and tighter, and tighter, as my POTS symptoms started to play havoc in my life again. And I noticed one day a couple of weeks back that after I had popped my neck I had an improvement in my symptoms. Well the improvement didn't last for too long, but I have noticed a very close connction between my neck, and at least some of my symptoms. So anyways yesterday started out good, but ended really bad. My chest was hurting worse then usual, my breathing was bad....you get the idea. I was having a really bad time. I was stretching my neck, because it was pretty bad like the rest of my symptoms, and it popped really bad. Once in a while it will pop this bad, where I have electric like shocks in my hands, and head. I had that happen bad last night. It knocked me for a loop at first, but then almost immediatly the chest tightness, and breathing just relaxed, and felt better. My head felt clearer, everything just seemed to get better. I slept so good last night, because it was the first night I didn't have chest pain all night, and when I woke up I only had pain and numbness in one hand, (which I usually have over most of my body.)Excited that just maybe I might have some kind of way to help myself I started looking up neck and chest pain. I found this article on myfacial pain syndrome, and the neck. http://saveyourself.ca/articles/perfect-spots/spot-04.phpI know a lot of you have myofacial work done. I was wondering of those of you who do, do you find it helps with your symptoms? And how often do you do it? I was also wondering in general how many other people have had neck or spine problems, and if they know how much relationship there is between dysautonomia, and neck or spinal problems? Thanks in advance!! Suzy Quote Link to comment Share on other sites More sharing options...
bellajulz Posted July 8, 2009 Report Share Posted July 8, 2009 Just a thought... I am starting to belive that the two are related.. Before I got sick I never had any direct neck pain, the day I fainted for the first time I had a strange neck ache all day. I mentioned this to the docs though no one has really thought much of it. I believe there is something that triggers the neck pain that is pOTS related. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 8, 2009 Report Share Posted July 8, 2009 I have had lots of myofacial work done to my neck, hip and entire back (over 100 PT appointments). I can say for certain that it feels great to have those tight muscles relaxed, but that's about all for me. It doesn't make my POTS any better, except that anytime we have less pain I think it is helpful! As I mentioned in another post, last week I felt great while I was taking clomid because it makes one retain fluids. I still had visible pooling in my extremities, because my blood vessels still didn't constrict. But the extra blood volume gave me so much energy and guess what else?... my back and neck pain were nearly gone for the whole week! I really think that decreased upper body blood flow not only affects our brains, making us tired, dizzy, faint, etc. but the muscles in our upper back and neck get starved for bloodflow too, creating tight muscles and pain. I'm starting to get arthritis in my neck and upper back, grinding of the vertebrae (called crepitus), and pinched nerves.I know that standing up straight with my head high and shoulders back is healthy for our backs. But most days I'm too POTsy and find myself bent over like an old lady. Last week when I had energy, I stood up straight without even thinking. POTS has caused me so much pain. I force myself to stand up straight whenever I think about it but end up bent over before I can catch myself. Standing up really straight makes my POTS symptoms worse because of the exertion.One month before I went to the ER for my first tachy episode in 2006 my hubby and I were T-boned which caused side-to-side whiplash and injured my hip. I also had mono 2 months prior. Mayo believes mono caused my POTS, not the trauma. I'm beginning to think I've had mild POTS for a good 10 years, however, because my neck pain and headaches go back over 10 years. I noticed way back then that lying down got rid of the headaches within a few minutes... hmmmm.I know there are some folks with real neck/cranial issues like chiari malformation or cervical cranial instability, and those issues can cause of exacerbate POTS symptoms. I don't think I'm in that boat, thank goodness. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 9, 2009 Report Share Posted July 9, 2009 My computer just deleted my long response ... here's an abbreviated version.Hi Suzy,You took the words right out of my mouth! I have very bad myofascial problems and pain and tightness in my neck and the base of my skull. I have told doctor upon doctor for years that there is some connection between my neck and my dysautonomia, but they just shrug their shoulders... and tell me that I am tighter than tight throughout my body, but especially in my neck. I was actually told yesterday by a podiatrist that he couldn't believe how tight the muscles and tendons in my feet and ankles are. I am one of those people who gets weekly myofascial and craniosacral work done by a PT, and it does provide benefit. Some days it helps my pain and tightness more than others, but the improvement is usually short lived or I make tiny baby steps of progress. I have been going for two years and working with a PT who I really trust and works well with my body. (You have to search to find a good practitioner). In terms of autonomic symptoms, I don't experience long-term changes in autonomic symptoms with the myofascial therapy, but I do know that for 24 to 48 hours after many of my appointments my symptoms are less severe and my body is in somewhat better control of itself. Also, I have mentioned on the forum before that using kinesiotape has helped me a lot. It is very effective at bringing down my muscle tension, and I have to constantly have it on several muscles in my neck and shoulders or the tightness is so severe that I am constantly dizzy and barely able to tolerate sitting up and holding my head up. Please feel free to PM me if I can provide you with any more support.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
njfainter42 Posted July 9, 2009 Report Share Posted July 9, 2009 It was strange to see this post as I was recently trying to figure out why I have sudden flare ups in neck pain. I was rear ended about 5 times...I've been to physical therapy, acupuncture, massage, chiro, etc. When my POT/NCS was really bad I had neck pain that ran into my hands causing tingling. Right now I am trying the graston technique done by a chiro on my neck and low back/hip where I have pain. I am not sure if it will work but the goal is to reduce the severity of my flare ups. I have been diagnosed with fibro so I believe there is a connection with NCS/POTS. I love massage but it's so pricey...I do neck stretches and chin tucks each night to help the neck. When my pain acts up I think my BP lowers and I get tired. I think light exercise helpsquote name='Broken_Shell' date='Jul 8 2009, 08:09 PM' post='117073']My computer just deleted my long response ... here's an abbreviated version.Hi Suzy,You took the words right out of my mouth! I have very bad myofascial problems and pain and tightness in my neck and the base of my skull. I have told doctor upon doctor for years that there is some connection between my neck and my dysautonomia, but they just shrug their shoulders... and tell me that I am tighter than tight throughout my body, but especially in my neck. I was actually told yesterday by a podiatrist that he couldn't believe how tight the muscles and tendons in my feet and ankles are. I am one of those people who gets weekly myofascial and craniosacral work done by a PT, and it does provide benefit. Some days it helps my pain and tightness more than others, but the improvement is usually short lived or I make tiny baby steps of progress. I have been going for two years and working with a PT who I really trust and works well with my body. (You have to search to find a good practitioner). In terms of autonomic symptoms, I don't experience long-term changes in autonomic symptoms with the myofascial therapy, but I do know that for 24 to 48 hours after many of my appointments my symptoms are less severe and my body is in somewhat better control of itself. Also, I have mentioned on the forum before that using kinesiotape has helped me a lot. It is very effective at bringing down my muscle tension, and I have to constantly have it on several muscles in my neck and shoulders or the tightness is so severe that I am constantly dizzy and barely able to tolerate sitting up and holding my head up. Please feel free to PM me if I can provide you with any more support.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
all4family Posted July 9, 2009 Author Report Share Posted July 9, 2009 Hi bellajulz, it is kind of like the chicken and the egg thing. Does the neck problem come from the POTS? Or does the POTS come from the neck problem? I think it will be interesting to find out. Hi Thankful, that is a very interesting thing you mentioned , because what you say about not being able to sit up straight. Do you know how many doctors have told me that maybe my bad posture is causing the problem. I frequently find myself hanging sideways over the side of a chair, just trying to get lower. But when I was feeling better I also stood better. Maybe there are a lot of factors going on here. It is interesting though. I definatly felt better after my neck popped, and this is not the only time. It has happened many times to me. Anyways thanks for your thoughts.Hi Broken shell, I am so glad I am not alone in my thinking! My improvement from the cracked neck was also short lived, as I am feeling bad tonight again. But not as bad as last night. But I feel like if I can at least find something that may help, it would make my life so much better!! I am definatly going to look into finding a myofascial therapist. Does insurance usually pay for this? Or do you think I will have to pay out of pocket?? I don't know what kinesiotape is? I am having a hard time holding my head up right now, but as soon as I let it rest for a bit I will send you a pm. I have really thought that my neck was a very good posibility for the start of this. ha ha!! I just wrote that about my head, then re-read your message, and you said the same thing LOL!! Although not being able to hold your head up isn't funny! And I feel so bad the computer deleted your response. It always happens when you put a lot of work into something!!Hi njfainter, what is the gastron technique? I am interested in doing something helpful for myself, and I can't take any meds. The first symptom )severe enough to seek help for) I had was numbness on the left side of my face, chest, and down my arm. plus some other things, but I know that at least some of my problems are connected to my neck. I am also wondering if I have fibro. Anyways thanks for your thoughts. I am going to lay my head down for a bit. Also I just read a similar post by mkoven. If you haven't seen it yet look for it. There has to be something to this. Thank you, thank you,Suzy Quote Link to comment Share on other sites More sharing options...
tilly Posted July 9, 2009 Report Share Posted July 9, 2009 I too suffered a neck and spine trauma over 20 years ago .... i damaged my brachial plexus which is the trunk of nerves that carry your sympathetic and parasympathetic nerves ( if i remember rightly ) ...... and i have wondered if there is any connection ... although i have never had a doctor to talk to about this ..... I have been tachy for a long time but only became ill two years ago to a more severe degree .... i have spondylosis in the whole of my spine and this causes significant pain and headaches and other symptoms and so i would not no if the neck injury was the cause of my "ist/pot" ...... but interesting that the nerves in this area are to do with the sympatetic nervous sysem ..... Quote Link to comment Share on other sites More sharing options...
njfainter42 Posted July 10, 2009 Report Share Posted July 10, 2009 I too suffered a neck and spine trauma over 20 years ago .... i damaged my brachial plexus which is the trunk of nerves that carry your sympathetic and parasympathetic nerves ( if i remember rightly ) ...... and i have wondered if there is any connection ... although i have never had a doctor to talk to about this ..... I have been tachy for a long time but only became ill two years ago to a more severe degree .... i have spondylosis in the whole of my spine and this causes significant pain and headaches and other symptoms and so i would not no if the neck injury was the cause of my "ist/pot" ...... but interesting that the nerves in this area are to do with the sympatetic nervous sysem .....www.grastontechnique.com/ I can't tell yet whether it is helping but so far no negative effects and I am hopeful. I went 2/week for a couple of weeks and now I go 1/week. Only once they overdid it a little and I had more soreness than I should have had so my chiro has been gentler with the technique now. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted July 10, 2009 Report Share Posted July 10, 2009 I was recently trying to figure out why I have sudden flare ups in neck pain.That's the puzzling part for me ... I don't tend to have pain all the time, but when I have a POTS flare my shoulders and neck seize in pain. For me what I noticed helps is to have someone push down REALLY hard on the top of my shoulders. But I feel so bad about asking everyone to help me each time this flares up, so I looked on the internet to see if there was some kind of massage that I could do myself.I settled on the bodybackbuddy ... after reading some reviews and looking at a couple of videos on line. (I picked mine up at Amazon with free shipping.)The device arrived yesterday. I was impressed that it was solid, not a flimsy piece of plastic. I looked over the online manual and within a few minutes found a position that I could hit that exact spot on my shoulder to aleviate the pain when it comes up. Have no idea how this will help long term. But I like accupressure in general, and this self-help-tool lets me reach some points that I otherwise would need a helping hand. Quote Link to comment Share on other sites More sharing options...
mkoven Posted July 10, 2009 Report Share Posted July 10, 2009 I have a slightly different one--a theracane-- and it really helps for those knotted lumps in my upper traps and inside my shoulder blades. the knots come back pretty fast, but it's nice to have some non-drug tricks up my sleeve. Quote Link to comment Share on other sites More sharing options...
all4family Posted July 10, 2009 Author Report Share Posted July 10, 2009 I am sorry I haven't responded. I am just really sick. I will as soon as I can.Suzy Quote Link to comment Share on other sites More sharing options...
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