Any fibro symptoms specifically in the head/neck/shoulders area?

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Date Joined Jan 2007
Total Posts : 196
   Posted 10/3/2008 8:52 AM (GMT -6)   
I am new to the fibro forum, but was previous on the chronic pain and migraine forums. I am not even sure if I have fibromyalgia, but it is my latest diagnosis. let me summarize what has been going on. Almost two years ago I was in a car accident. two to three weeks later I got the worse migraine ever, and it never went away. I had been diagnosed with whiplash and strained neck muscles. It started out with just a horrible headache, but then my neck would hurt, then soon it was the muscles in my shoulders. I had tried physical therapy, chiropractic treatment, nerve blocks, RF, trigger point injections, and even wore a neck brace. The neck brace helped me the most. I have been told I have cervical spondylosis and a tiny bone spur. I have been on countless medications to no avail.  But lately I have been averaging 2-3 days a week of pain. The pain is a little different and not as severe as it was in 2007. As of right now I am on Ultram and Cymbalta.

I had always heard that fibromyalgia is pain all over the body. Mine is strictly in the head, neck, and shoulders. Sometimes I feel this pain deep inside of my neck, and I think it is nerve pain. Sometimes just rubbing my neck over my spine hurts.And then sometimes my shoulders hurt, which I know that is muscular. Then my headache is usually in my forehead and I am sure that is a tension headache. Sometimes it hurts at the base of the skull. It feels like I've been hit in the back of the head with a baseball bat or something.

Based on all this, I am not so sure it is fibromyalgia. Personally I think my doctor just put that name on me because she doesn't know what is wrong with me. She didn't run a test, she just said it seems what I have is more muscular, and based on her experience, that is what she thinks I have.

I am just wondering if any of you have experienced this type of pain. If so, what works? I am 29 years old, but some days I feel so much older. The pain just kills me sometimes. Its been a rough 2 years!

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Date Joined Aug 2007
Total Posts : 6067
   Posted 10/3/2008 9:43 AM (GMT -6)   
Hi Holmesla and welcome. Many people with fibro have pain in the neck and shoulders but they also have widespread pain else where. Although with me it took a few years before my pain became widespread. It took an all out flare for me to get a dx.
I was in a little car accident last Nov and suffered from neck pain went to a chiro for weeks and had massages but it seemed like the more work I had done on my neck the worse it got. I had a CAT scan and all it showed was some osteoarthritis. My neck has now become a hands off zone.
I get the pain at the base of the skull and in the muscles on both sides of my spine. I get little shooting pains in my head from the muscles on the left side. The chiro did tell me that the muscles in your neck go up over your head and can cause pain in your forehead. I have sore spots on both sides of my forehead.
Maybe your doc did pull a dx of fibro out of the bag or maybe it will spread to other parts of your body.
luv and hugs
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   Posted 10/3/2008 11:39 AM (GMT -6)   
I have pain all over, but it is mostly in the neck and shoulders, I think that comes from holding all of the tension there. If I can relax my shoulders it helps a lot. I have a rice bag called a bed buddy. I heat it in the microwave and then wrap it around my neck. I think that it really helps to relax the muscles and eleviate the pain. Maybe you would want to give one a try.

Best wishes to you and welcome to the fibro forum.

Hugs, Karen
  Moderator-Depression and fibromyalgia
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Date Joined May 2008
Total Posts : 1081
   Posted 10/3/2008 12:46 PM (GMT -6)   
Hello Holmesla ; I  was dx. with Fibro in 94, but it wasn't severe enough to interfere ith my working several jobs, raising two boys and at one point taking part time university courses. It was an all over kind of pain, just aches and pains through-out my body particularly the long muscles of the legs, back and arms. Never could hold my arms up for more than 45 seconds without them becoming very painful. I managed with bed buddy (rice bag) a massaging back cushion, and amyltriptiline at bedtime. Also, some OTC tylenol. Then in 2002 I was struck by a truck in a pedestrian cross walk. I developed within a week tremedously debilitating migraine headaches, a stiff neck that crackled and crunched when I tried to move it and a much greater degree of body wide pain. I think the MVA/ Pedestrian accident allowed the fibro to settle into the damaged areas and there it sits, today. I haven't had a meaningful job since then. I cannot do any physical activity beyond two or three hours, and that's when I'm not in a flare. When in a flare, I can do little else than sit at the computer, watch tv, or read. When in a flare my mild pain reliever doesn't do diddley so I have to take amyltriptilene during the day which leaves a bad taste in my mouth, makes me groggy, and all I want to do is curl up in bed.I hope that you have sucess perhaps with accupuncture, and massage, and there's this really cool thing you can buy at medical supply stores where you have a chin strap attached to a pully with a sand bag which hangs from the ceiling. It's actually traction for your neck. I found it helped a lot. But, and this is a big butt, get it ok'd by your doctor before using it. Good Luck.

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Date Joined Jun 2008
Total Posts : 669
   Posted 10/3/2008 1:16 PM (GMT -6)   
Hi Homesla. I just want to add that I hope you've had an MRI to rule out a more complicated spinal injury as a result of the car accident. My son's girlfriend (age 23) was also in the same kind of pain you describe after a car accident (which she walked away from). Her first dx after xray was whiplash (from the ER). Her symptoms didn't improve and only got worse, so she went back to the doctor, who sent her to an orthopedic doc who sent her to a neurologist, who dx'd her with syringiomyelia - which is a cyst formed inside the spinal column as the result of the trauma from the accident, and causes nerve damage. It took months for doctors to take her pain seriously and then more months before her insurance company would schedule the MRI (despite the fact that the neuro was calling for it). She finally just went back to the ER and had the MRI done from there. And it is what showed the cyst and the injuries to the soft tissues. She's had a lot of PT, drug therapy, etc. and is finally (1 yr later) showing some improvement - but she still has pain and the awful headaches.

I don't want to scare you - fibro can certainly cause what you describe as well - but please seek a second opinion - preferrably from a specialist who will make sure you get an MRI taken. There are too many doctors who don't have the breadth of experience to diagnose everything, and should refer when they are unsure.

Good luck, and hang in there - it's hard, but it's so important to be your own advocate - and make sure all the appropriate tests/steps have been taken. Maybe you have a friend/mate who can help you do that.

diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

solar powered
Veteran Member

Date Joined Nov 2007
Total Posts : 538
   Posted 10/4/2008 10:36 AM (GMT -6)   
From what I have read to be officailly diagnosed with fibro you have to have pain above and below the waist. The rhuemys set up that criteria several years ago which also includes the tender points, etc. Of course not all drs follow things like that. Maybe you might want to go to a rheumy to get a second opinion on the fibro issue. I am sorry that you have been struggling so much. Lisa

Regular Member

Date Joined Jul 2008
Total Posts : 368
   Posted 10/5/2008 4:38 AM (GMT -6)   
I took a blow to back of head which triggered fibro.  my pain is in neck , shoulder, and upper arms, they ache and burn intensely
all the time to the point of needing narcotics, plus because its in my shoulders I need arthritic meds.    sue2z cry cry
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica

Regular Member

Date Joined Jul 2008
Total Posts : 408
   Posted 10/5/2008 8:36 AM (GMT -6)   


Most of my pain is in my neck and shoulder also.  I also had an accident but is was a ceiling fan that hit me (it fell, I no longer will stand under one).  My pain started in the neck and shoulder and then moved to other parts of the my body.  Have you seen a rheumotologist, if not, you may want to ask to be referred.  If you do have fibro, a rheumy may be better able to help you with the pain.

I hope you feel better soon!


Regular Member

Date Joined Sep 2003
Total Posts : 254
   Posted 10/7/2008 7:41 PM (GMT -6)   
This is exactly where my FM started. I worked as a nursing assit,. in a nursing home and was put in a head lock by a resident. I had MRI"S, bone scans, etc. and nothing was found, this was in 1882. I saw several different Drs. and none could figure out what was going on, than they started thinking M.S.

Finally I went to a physciatrist (sp) he deals with muxcles, ligaments and etc. He dxed me with Fm and chronic myofascal pain. It was only in my neck and shoulder on the left at that time, in a few years started spreading into the upper chest, shoulder blade and arm, than the right side started as well. It went into my ribs and breast after that and than the lower torso. I would say it took about 5 years to spread all over my body, but the Dr,. dd tell me it would spread because all your muscles are connected.

I had MRI's repeated about 5 years ago have severe arthritis, herniations and nerve impigment in my neck also have a large bone spur and arthritis in my thorastic spine. So now the pain comes and i do not know from what.Right now I have terribe spasms in my low back with leg pain and tingling also getting those shock like pains in my low back. Never a dull moment with FM.

Hugs, Linda


Regular Member

Date Joined Jan 2007
Total Posts : 196
   Posted 10/10/2008 7:40 AM (GMT -6)   
I have had a MRI to rule out anything serious. Thats where they see the spondylosis and tiny bone spur.
I don't know, a big part of me doesn't think its Fibro, but I just don't know. I will keep doing what my doctor says, and perhaps get a second opinion.
I really feel that if I am careful in my posture and the way i sleep, I can avoid the pain. The pain often comes when I sleep on my side. i just feel it in my neck. Then it moves to my shoulders and head.

Veteran Member

Date Joined May 2008
Total Posts : 704
   Posted 10/10/2008 7:54 PM (GMT -6)   
Hi Holmesta
Boy, you hit in right on the nail describing the pain as someone hitting you with a bat at the back of your neck. That is exactly what I tell people when they ask me about the pain in the back of my neck. Not the initial hit but what it would feel like directly after. I haven't had any accidents it just started happening about 9 yrs ago with the bad headaches. I didn't even realize at the time that it was actually coming from my neck. My shoulders are always sore and I can never seem to comepletly relax them. I'm actually huring right now pretty bad. I took 4 advil thinking that would help...NOT, I'm going to have to pull out the percocets and take them. I didn't want to as we are going to dinner but if I don't take them I will be sitting there in terrible pain.
My neurologist wants me to try having the shots in my neck, but I am scared to death to have that done. I'm so afraid of the actual needle going into my neck that I just can't get beyond that fact the it would feel better.
Doing alot of walking will bring it on for me too. Also if I'm doing alot of housework, I'm done after that. I am so with you on this. I usually don't have pain below my waist and my rheumy has confirmed that I def have fibro.
What works for me is percocet and muscle relaxers, neck rubs and the rice bags.
I sure hope you're able to find something that works for you.
Let me know... I also take Lyrica 200 mgs 2x's a day. I have good days and bad days...make sure you stay on your doctor about getting something for the pain. It may take a while to find what works best for you.
Hang in there, you are NOT alone!!
Fibromyalgia, Anxiety, IBS, Reflux, Insomnia,
Lyrica 200Mg X2/ Zolft 150 Mg/Ambein CR/Zantag (presc strength)
Taking it one day at a time.... 

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