Something strange going on with my neck!

It's 5am now and this is the usual time I wake up when in pain. Something is going on with my neck. For the past few days, for some reason I can barely lift my head off the pillow. It feels extremely heavy and I have to use both hands to lift it up. There is no pain, but as I am trying to lift the neck, it's a struggle, like the neck doesn't want to respond. Very strange. Once I am up, it moves fine.....side to side and up and down.The rest of me?? Ouch! I hurt everywhere this morning. especially my right hip and upper back. I do remember years ago being diagnosed with what is called ANKYLOSING SPONDYLITIS. It has to do with the spine and discs. I do get a lot of Firbro and Arthritis in my back. Also terrrible Fibro on the sides of my neck, when it's inflammed. I can't drive when this happens because I can't move my head to look behind me or sideways to look out of the window. I have a question: Do you find that if you lift something heavy, your Fibro will flare up? This happens to me quite often.. Just now, I turned my neck to the left and right on top of my spine I am now having pain. Just noticed it. Would it be obvious to say that my neck problem might be related to the Ankylosing Sponylitis? Has anyone had this problem with their neck?I I am always discovering something new going on with my body in regards to the Fibro. .It frightens me a little bit, because I am having to limit a large percent of my body of what I used to be able to do. It also makes me angry and can, at time, bring tears to my eyes. Now this weird neck thing is going on as well. I see my doctor next week on the 11th and will have to bring up what else is going on with me. Always something, you know? Do any of you have any idea as to what the neck problem might be? It might help me in talking to the doctor and what the possibilities could be. Thanks so much! Laurie

I am not a doc but I think you should call yours ASAP! How long have you had this going on may make it worse. Please be careful and do what the doc says.

Good luck! I will be thinking of you.

I had something similar when I increased my night time meds. If I woke in the middle of the night, I would try to lift my head off the pillow and it felt extremely heavy. This was due to meds though and I did get it checked out. I do agree that you should consult your doctor.

My neck has ruptured discs. I have a lot of problems with it. I just live with it. The pain clinic helps me some.

I wish you the best Laurie. Hugs and love.

Has your doctor ever checked for chiari malformation or anything like that? It often involves headaches though. I have just been diagnosed with Ehlers Danlos Syndrome and a lot of people with EDS have fibro and many have "neck instability" because of the CTD. A CTD means connective tissue disorder. EDS is a genetic mutation that causes the body to make faulty collagen. Ankylosing Spondylitis is something I've seen people with Ehlers Danlos have also. I have EDS with hypermobility.. I'm not a doctor though. This is just my experience. I hope your neck feels better.

Susan W

Hi Laurie,

It can definitely be related to the Ankylosing Spondylitis. But it can be muscle also, so it could be Fibro. It could be something to do with the nerves in your neck area. There are a lot of things, but it sounds kinda urgent to me since it's sudden onset. Can you call the doctor's office, see what they say.... they might tell you to go to the ER to be checked. At least let them know today so the doctor can decide if it should wait or not.

Lifting something heavy, getting a bug bite, or just moving wrong can trigger FMS to flare up in the strangest ways. I was diagnosed 20 years ago, and I still have new symptoms all the time, weird things. I also have herniated discs in my neck which causes a lot of different things, like the muscle tension where I can't turn my head enough to drive. I never know if things are happening because of my spine, or the FMS.

So many different things could be going on with you, and with your medical history, I really think you should call the doctor's office today, just to be sure.

Keep us posted!

Renie ♥

Susan W. - thank you so much for the information! I will definitely bring this up to my doctor next week. I don't have pain with the neck when trying to lift it. But it feels like someone is actually holding my head down and I am struggling to get my neck off the pillow. I will soon be seeing a new Rheumotologist and as I continue to get more info from this website, I am going to write things down and tell the doctor. I really wouldn't be surprised if I have CTD. I have heard of this before. I am gaining so much more knowledge from this website and it helps me to feel hopeful that I can get the Fibro and problems associated with it, under control. Also - I do have headaches. Mostly migraines, but have had mri's done several times and everything seems to be fine. I do have arthritis in my neck, on both sides. I am going to see the doctor next week and she is going to refer me to a doctor that is highly recommended. Thanks so much for your info! Laurie

Thanks Renie - I am going to call my doctor and see if I can get in sooner, as my appointment is supposed to be on the 11th. When you mentioned, 'moving the wrong way', I could relate to that. I also can very easily pull a muscle in my neck as well. I see my regular doctor and she is to recommend a rheumotologist. I didn't like the last doctor I had. He was so rude and horrible to me, that I left his office in tears.....but of course I said a few choice words to him! (Smile). The new doctor that I will be referred to, is a woman. I feel better about this now.

I made a promise to myself, that for the New Year, I am going to really take control of my Fibro and anything else associated with it. The kind of life I lead now is not the life I want to have. I am really going to push through all this and get it taken care of! Thanks for your info! Laurie

A lot of doctors don't know much about EDS and other CTD's which makes them harder to diagnose. I hope your doctor is at least open to the idea and will evaluate or refer you. I just wanted to add that with Chiari an upright MRI is sometimes necessary for diagnosis because the if the brain is squeezing down into the spinal canal, it;s easier to see if the patient is standing up for the test. You're welcome and I hope the new doctor they refer you to is a big help. Please let us know what happens.

I had terrible headaches and pain in the back of my head for two years, going to physical therapy, biofeedback, saw a pain management doc and took muscle relaxers all day long, had occipital nerve block, cervical facet injections & trigger point. I had more massages to try to help get rid of the hard knots I had in my shoulders from the tension I had due to all the pain. This continued, even after I had an MRI a year into this mess until my physical therapist referred me to a neurosurgeon who asked me why I didn’t have surgery after I had the MRI. I had 2 herniated discs at C 5/6 & 6/7 and ended up having a double cervical fusion. The doctor thinks the cause was due to my desk at work being too high and I was always looking up at the computer. So I had an ergonomic guy come from the schools insurance company look at my work area and ended up having the desk cut down and a new chair!

I’m sure I did more damage waiting so long and trying to do exercises. It was pure hell. Got the TMJ diagnosis after the neck surgery, as the tension aggravated everything. Like everyone said - don’t wait too long to get it checked out and if it continues - find a doctor who knows what their doing. It ticks me off that I lived with all that pain and doctors ordered biofeedback as treatment! Hopefully, it’s nothing serious and like you said, it may have been aggravated from heavy lifting. I wish you the best and hope you find a great doctor.

Sandy - thank you so much for responding! I will be seeing a new specialist soon and I have learned so much

from you and others about what could be going on with me. I had TMJ too. Maybe you already knew this?

It was so painful and to also have to deal with the FIbro as well......a double whammy! Hugs! Laurie

Hi Laurie,

I am not a doctor, but I wonder if this is what's going on with your neck?

About Ankylosing Spondylitis (AS)

Ankylosing spondylitis (AS) is a disease that causes pain and inflammation of the joints of the spine. AS affects the joints between the vertebrae and also the sacroiliac joints (the area where your spine meets your pelvis). In many people, joints of the arms and legs can also be affected. If left untreated, it eventually can cause the affected spinal bones to fuse together. Early diagnosis and treatment helps manage symptoms and may help to limit damage to the spine and damage to other joints.

I would ask your doctor if your ankylosing spondylitis is affecting your neck. I also think it's worth your while to look into what Waterwaves is suggesting. It's a bit shocking how many people I've spoken to who have fibro plus hypermobility and/or EDS.

Muich luck you to. Please keep us posted!

You describe it well - difficulty moving, but no pain. Also the time of day. This is a great description for the doctor, as it will help him help you.

I have cervical disk issues - central stenosis, squashed (herniated) disks, arthritis, osteoporosis, etc. etc. etc. If I have done a lot of lifting over the course of a day, or if I have carried a purse, then I have similar symptoms as you. My head gets heavy, and I have to "take a break from gravity" by lying down on my side with my head carefully positioned on a tempurpedic pillow. I use that kind of pillow because I can control the position. Lying on my side also relieves full spinal pain, as I have similar situations in my lower back, due to falling as a computer chair rolled out from under me.

In contrast, when I have fibro symptoms, it usually includes pain, fibro fog, fatigue, diffuse muscle pain that does not have a specific location. When the pain is in a specific location, I know something is wrong. I know you said you don't have pain, but it is still in a specific location, hence it's time for the doctor.

There are weird symptoms from fibromyalgia, but sometimes we also have other conditions. This is why I would recommend telling your doctor what is happening - especially since you have ankylosing spondylitis.

Please keep us up to date on how you are doing!


Susan (Scribelle)


Funny that I would log on tonight and see this discussion about your neck because my Neck has been so sore lately and I do not know why. If I turn to the right the pain that shoots in my neck almost makes me pass out. My head doesn't feel heavy..just painful...but my girlfriend was diagnosed with cervical dystonia and she can barely lift her head up..and she has to sleep on one side because her whole head twitches all night...cervical dystonia all I know about you have uncontrolable muscle movement...your whole body can twitch into weird it..just to make sure you don't have any more of the other you can tell your doctor..because unless you ask..they don't check for gf's went undetected for 10 yrs...and in that time she now has permanent of luck!!!! oxoxo