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#44074 - 07/29/06 07:06 PM my head feels so heavy
cjjames3 Offline
Registered Visitor

Registered: 08/08/05
Posts: 339
my head has been feeling so very heavy. it feels like i need sombody to hold it up? i guess that's the best way to describe it. i also have what i call my "neck bump". it is right where the middle of your shoulders and your neck meet. it gets swollen and painful. my t-spine is the most painful area, and always has been. i don't want to hold myself up anymore.

i was reading another post about their hands falling asleep and being numb, and that has been happening to me lately too. they fall asleep while i'm trying to stretch out my back, or any time i try to be on my stomach. i can't hold my head up for very long if i'm on my stomach either. i know that for a lot of you, you can't turn or move your necks, so i am grateful that i can. i just wanted to know if this is how some of you started to fuse.

thanks for reading!

[19_1.jpg[/i/Users/christinajames/Desktop/DSC_0542.JPGmg]The reason i keep on movin'!!!

#44075 - 07/29/06 07:36 PM Re: my head feels so heavy
wizardofoz Offline

Registered: 12/30/05
Posts: 250
Loc: Sydney, Australia
Hey Christi,

I have a bump in the same spot. The bump has been there a very long time and well before I was diagnosed. I agree that it gets very sore, and I agree that the pain from that spot seems to spread to the arms and hands.

When I fist had noticeable problems I was sent to a rheumatologist in Canberra. My doctor thought that I might have AS because I had returned a low positve ANA result. I had plantar fasciitis in both heels. The rheumatologist said that I had fibromyalgia. Then I went to a rheumatologist in Townsville Qld, and he was observant enough to be concerned about that particular spot.

I have arthritis in my thoracic spine, as well as the thoro-columnar (sp) spine. I have arthritis in the lumbar spine. There is evidence of arthritis in my hips and pelvis, as well as my feet, especially around my toes, in my knees, wrists, neck and hands. I have real difficulty that these signs are dismissed as being FMS.

It was only after the inflammatory markers changed that a new rheumatologist diagnosed a mild inflammatory arthritis, plus secondary fibromyalgia. The other Sydney rheumie had diagnosed generalized osteoarthritis plus enthesitis. However, I kept nagging my doctor about my pain issues, and eventually he ordered more x-rays. The sacroiliitis was not visible on the x-ray, but he was willing to name the condition as AS. The good news happens to be that there was no sign of fusing.

That spot you mentioned really hurts at times, and when it is actively hurting I end up with very sore shoulders, to the point of the muscle spasm being very visible to the naked eye.

The best way of treating this problem is to keep with a good exercise program - stretching and flexing is very important for our mobility.

Today is the first day of the rest of my life

#44076 - 07/29/06 09:11 PM Re: my head feels so heavy
Rob H Offline
Registered Visitor

Registered: 02/09/04
Posts: 1269
Loc: Westwood Hills, KS
Hey, Christi,
I just saw a cool device in a medical supply mag (it was in skymall of all places) that looks like it might help. It's an inflatable cervical collar, and I'm giving serious thought to buying one myself. I'll do a bit of research on it and get back to you, if I decide to buy it. If you want me to I can PM you link to where you can buy it, when I find it again...

My neck is fusing, almost completely done now, but it hurts like hell whenever my head gets pushed around - left,right,front,back - doesn't matter which way, and my neck muscles are way over-stressed keeping my head locked in place, sorta 'guarding' the fusion of my cervical spine, and I know just what you mean about having a 'heavy' head. I think I'm the one who posted about having a 'numb' head, as well - I'll wake up with a funky-a** numb spot on the whole side of my head, probably from nerve impingement. Fortunately it usually clears up after I've been up for a while, but it sure weirds me out... I feel like I could break a bottle on my head and wouldn't feel a thing, until the numbness wore off and I had to go get it stitched up, that is... smile

I also get a huge amount of relief from a product called a 'bed buddy', which is like a tube sock-type thingy with rope handles on each end, and it's filled with some sort of beads that hold heat when it's microwaved for like a minute and a half - it's like a heating pad that you can wrap right around the sorest part of your neck. (if you've ever tried that with a conventional heating pad, you know that it's really quite impossible) I got this thing at Osco and it was cheap - under 10 bucks.
Small price to pay for a huge comfort.

Hope this helps, I feel your pain - honestly.


Always remember, E=mc2 is a Localized phenomenon. Oh, and never forget where your towel is.

#44077 - 07/29/06 10:00 PM Re: my head feels so heavy
Kay101629 Offline
Registered Visitor

Registered: 02/10/06
Posts: 566
Loc: Midwest
I have the same bump and it feels like intense pressure there along with pain in my neck upper shoulders and arms. I don't show any confirmed fusion yet. Tests all say, "slight to moderate osteophyte formation" all up and down my spine. I asked my doctor if this could be early fusion and he said it was certainly possible. That was a year ago and I am much more stiff now.

My neck is a mess and was before being diagnosed with AS. I have had a problem my entire life with looking up more than a few minutes. Painting or shopping at warehouse stores where you have to look up has always been painful.

Also, when I had a CT of my neck, the tech kept trying to get me to straighten it out. She kept saying it was "like an upside down C." I have some kyphosis in the shoulder and that is just what it does when I lay down! I can no longer lay on my stomach at all because my neck just won't turn in that position. I lay in the tanning bed during the summer months. In the past I was able to flip onto my stomach and gradually turn my neck enough so that I could lay my cheek flat on the surface. The first few times I did it each season, it would hurt but after that it felt sooo good.

My ortho has me do exercises that help with that spot you are talking about, I think. When he examines me, he puts both hands on either side of my shoulders and sort of lifts up while pushing back at the same time. I can feel the tension release back there. The exercises are just basic ones you may have seen, but done a little differently.

I stand as straight as I can with head, shoulders and butt touching the wall with heels about 2" away from wall. I just lift (shrug) and pull back on my shoulders in one fluid movement back against the wall, relax and repeat. I have seen this exercise on the AS site I think but it has you shrugging as high as you can and then pulling shoulders back against the wall as far as you can, in two separate movements. That really feels miserable. He has me doing it in one movement and it feels pretty good and strengthens your back muscles at the same time. There is also one I do where I lock fingers behind my head, not my neck and gently press with my hands against my head for a few seconds. That also helps with the heavy head feeling. Of course ask your doctor before doing, but wanted to let you know these have helped me.

#44078 - 07/30/06 04:07 AM Re: my head feels so heavy
jimmy white Offline

Registered: 06/21/06
Posts: 62
Loc: scotland
i was the one who posted on your numb head post, my back is fused and i now feel my neck very stiff and painfull as if its in the process of fusing, when i try my hardest to exercise it, i feel , and here, like bones cracking, even some one sitting next to me can here it, i would be interested to hear more about this inflateable neck collar,,j w
jimmy white

#44079 - 07/30/06 08:37 PM Re: my head feels so heavy
Terry Stephens Offline
Registered Visitor

Registered: 03/01/04
Posts: 1543
Loc: Michigan
Hi Christi, I sure can relate to what your saying about the pain of holding your head up. This was one of my biggest problems the last year I worked before I retired this spring. I also experienced this when I was driving any great distance. I did find a soft cervical collar helped a lot I didnt wear it a lot but did wear it when I was flared so bad I could hold my head upright. Do you suffer from any Kyphosis because this than even worsen the pain because of the head being shifted farther from the balancing point of the spine. Im almost completely fused with over 64 degrees of Kyphosis and still find it very painful to support the wieght of my head. I often sit with my head resting in my hands because of the pain. Nerve impingement or a combination of both vascular and nerve pressure can cause the numbness you describe. Id as for some further testing to try to pin point the areas giving you the most problems. I wish for you some relief very soon. Terry

#44080 - 07/31/06 12:24 PM Re: my head feels so heavy
IrishElf Offline
Registered Visitor

Registered: 01/14/04
Posts: 5612
Loc: Upper Midwest
I just wanted to interject, I have PsA (psoriatic spondylitis) and have the same "bump" on my spine just where my neck meets my back. If I press on it it hurts. And if I hold my arm the wrong way of in certain positions for too long my hand/arm will "fall asleep".

As you slide down the bannister of life...May the splinters never point the wrong way.

#44081 - 07/31/06 07:36 PM Re: my head feels so heavy
bstharper Offline
Registered Visitor

Registered: 06/21/06
Posts: 169
Loc: Tennessee
I bought one of those bed buddies at Walgreens. I sometimes wake up and can't turn my neck to one side. Also I feel a pulling, tightening up, stiffening feeling along each side of my neck down into the collar bone area to the shoulders. Thanks goodness I can look around and turn my head. I don't know if these are signs or not??? that I might be getting worse????? Those microwavable bed buddies does help to put around the neck.
Sherry Harper, 37 AS at 32


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