posted
i have had that same neck pain for 4 years. base of the skull, in the back, and headaches, feeling like I cant hold my head up
after 8 months of suffering with it, i got to the point where it was unbearable, and went to a pain clinic and got on pain meds
I am still on pain meds and no explanation. i think it could be a chronic meningitis (i had meningitis when it started)
since them my spine has gotten progressively more damage on the MRI's, from the neck all the way to the tailbone. i keep telling the doctors i think i have an infection in my spine, but they dont hear me
Posts: 615 | From maryland | Registered: Oct 2007
| IP: Logged |
posted
It's bad!!! I remember!!! Mine was more like an incessant spasm in my neck up to the skull.
REALLY really painful.
Most likely you're herxing. Could last awhile too.
Have you tried ice? or a heating pad?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Trigger point injections of lidocaine if your pain is from muscle spazms at the base of your skull and shoulders.
Poke around with a knuckle back there. Find a big painful lump? It's quite common with lyme (and typically caused by low magnesium levels).
However, the spazms do not go away on their own and frequently cause 'referred pain' up and over the back of your skull, down your neck and even across the side of your ear to your jaw.
I too suffered that and spent months in a neck brace and ice on top of my head (while at work - soooo attractive), before I went to an LLMD.
Several series of trigger point injections finally broke them all up. A little shot in the skull is not nearly as scary as it sounds, and it blissfully numbs the area for a while afterword.
For immediate relief of the referred pain, have someone press as hard and as long as you can take on the lump. That spot may be sore afterward, but the referred pain (causing those fun headaches that wrap around to behind your eyeball) just might be gone. Heating pad may help as well as lotion with arnica.
In the long run, trigger point injections and IV or IM Magnesium will treat the problem and keep it at bay (or hopefully never reappear).
Hope this helps someone.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
I finally went to a chiropractor for the pain who said that massage would be better. I really am greatful to him because it is 3 weeks into that and I am feeling a lot of relief.
She works on the knots, as much as I can take -more each time. You are sore and feel bad for a couple of days after. You must drink a lot of water after.
I was recommended to the place I go by a friend who is being treated for fibromyalgia. It is expensive but well worth it.
Also increased my magnesium and wish I had known about that supplement a long time ago.
Hope you get relief soon!
Posts: 472 | From New Jersey | Registered: Dec 2007
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Zanaflex can help. It's an antispasmodic that relaxes the muslces.
Also, myofascial trigger point release might help. It's hands on body work that releases the tight muscles.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
Although I didn't know it at the time, the excrutiating neck pain you describe was exactly what I was experiencing when I believe I first contracted Lyme 23 years ago.
The only thing that gave immediate relief was to wear a neck brack for a couple of months. (Too bad I didn't know it was Lyme--I'm sure some antibiotics would have done the trick.)
The neck pain has persisted over the years, but thank God not usually as bad as the initial occurrence.
Anyway, over the years of pre-lyme diagnosis, I tried many things for neck relief. PT was not a big help. Massage was a disaster. But chiropractry has been a lifesaver.
I guess different strokes for different folks. But the really uncomfortable-looking neck traction did me a world of good. Good luck.
Posts: 345 | From East Coast | Registered: Apr 2008
| IP: Logged |
posted
Oops. Forgot to say that along with neck relief at the chiropractor, I had almost a complete disappearance of daily migraines. Again, I am convinced it was that awful neck traction that did it!
Posts: 345 | From East Coast | Registered: Apr 2008
| IP: Logged |
daise
Unregistered
posted
Hi bunnyfluff,
I know it hurts. It's hard to sleep.
For me, antibiotics have very slowly (ugh!) taken it away. It's far worse while herxing.
What helped my neck muscles some was ultrasound treatment from a physical therapist. That contributed a bit to helping the pain around my skull. My shoulder--neck--head pain is all related by muscle pain (caused by goober germs.) Again, it's been very much helped with antibiotics.
posted
Bunny, I told my doctors I wanted to chop my head off. And I wasn't kidding. It seemed like an almost reasonable response to the level of pain I experienced. It is much less FREQUENT now, but just as bad as ever when it does come. It usually lasts just 4-5-6 days for me now when it arrives. I don't know if I'll have this forever or if it will slowly fade away. I've treated 14 mos with 400 mg doxy or doryx, before that sick for about 1 1/2 years prior to dx.
otm
Posts: 314 | From east coast | Registered: Oct 2007
| IP: Logged |
Alv
Unregistered
posted
Mine started 20 years ago-after I have had the high fever -but it will come and go.Than with time got worst and worst and I had to look fro special pillows..that releifed some pain on the neck.
Than with time I got worst and the pain spread to my shoulder and my hands.
I had nights that I could not move my arms--my neck was constintly in pain
Than continued physical therapy -and weight lifting helped slowly that pain.
Antibiotics brought it back so severely .I learned that the bugs were releising the poisons and little pockets were created around my spine...
My chiropractic -will adjust my neck -and if you go to see somebody that does adjustment will notice that your neck is not Ok ...
Once I get the adjustment and he presses the pockets of the toxins around my back and close to the neck -i will be in pain for a few days.
You need to drink water and do epsom salt baths to release them quickly from your system and than feel better.
They are better now -but still have days that really hurts...mostly on rainy days or if I do to much for my conditions right now.
It hurts to raise the hands ...in the morning..I know bart ( whoever has it ) increases that pain more..as it hurts not only in the muscle but deep in bones .Probably had bart before I got lyme.
Yes my chiropractic uses a machine that stimulate muscle movements and heating pads on my back that -presses the bubles around my right side mostly -where my symtoms run -than adjust my body .
After that I feel that i can breathe...as a new person .It is worth a try.Massage caused so much pain in the begining -so I am not using that for the moment.AZITHROMAZ helps mostly as it reaches the ketes in the skin.
When I am off azithr and other combo the pain gets worst.I wish I could do HBOT -so the antibiotics could go deep in the tissue and get the ketes .
BUT I can not have that luxury ( $$$)!
IP: Logged |
posted
I have the same thing. I describe it as feeling like my head is going to crack off my neck. At times I feel like I have to hold my head up with my hands.
I think the few I tell think I am exaggerating. I have a high tolerance for pain and it hurts something terrible.
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
posted
I don't want to say "I'm glad that others have been in the same boat", b/c I would not wish this pain on anyone, but I am glad that it seems that it is not unusual to have this horrific pain.
No pain, no gain, it seems.
Thanks!
Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have it too. So sorry you do. the neck does contribute to the headaches for me. Sometimes the pain is through my whole spine.
Once my head hurts so bad light, sound and odors make it much worse. I have lyme/babs not sure which one is doing it to me.
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
That was one of my worst symptoms before being properly diagnosed. It felt like there was a vice grip on the base of my skull.
Massages would help temporarily. I would beg my boyfriend to squeeze that area as hard as he could because it actually helped to hurt it MORE than the pain it was already causing.
I was constantly squeezing/pressing/rubbing those two skull nodes with my thumbs...always asking my Mom to rub it for me, too. JUST THE WORST!!!
I am excited and thrilled to tell you that after being treated for Lyme 6-years-ago, I haven't felt that horrific vice grip pain in 4 years. It WILL go away but I will never forget that feeling/sensation/tension-grip as long as I live.
posted
I have to battle this same pattern of pain. It is so brutal. It is like a piercing claw at the base of the skull.
A pain patch has made a big difference, and I have an arsenal of stuff for break-thru pain.
I'm considering doing a procedure called nerve ablation - where a lasor burns the nerves. It's not the full blown nerve ablation that i'm considering - it's a variation of it where the nerve is heated but not burned completely.
I would just LOVE to get rid of the pain without pain meds. the pain dr. said that if the pain was based purely on inflammation and not any known structural issues, it might not work.
I'm going to do some more research on it, and try to find some patient groups online who may have tried it. Anyone know of any?
Anneke
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
posted
My neck ach was a problem in the early beginning of LYME, boy did it hurt, just could not move and would last for a few days at a time. Along came headaches and shoulder pain
After starting treatment for LYME that is when the pain in the neck was at its worst. That has been a year ago, could not hardly move my head, I believe this was the most painful hexing as of yet.
Posts: 108 | From maryland | Registered: Sep 2007
| IP: Logged |
posted
My neck pain is very intense, and I currently see a chiro every 3 weeks, and have weekly PT. This is one of my worse symptoms. I have not done massage, except by the PT, because my insurance will pay for PT, but not massage.
Want to try something? I have been going to PT for 2 years and recently switched to a new practice. This person was playing around looking for trigger points and ran her hands up and down my arm. Just below the elbow, on the forearm, it was very tender - I never noticed that before. Well, she rubbed that spot, and darn it if the pain in my neck let up.
"the hip bone's connected to the - thigh bone"... Oops - showing my age here!
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic