posted
Is this a common lyme symptom? I feel like the left side of my neck is weak and is it is hard to hold my head up at times. The right side seems normal.
My LLMD calls this "head tilting" and tried to reassure me that this is not ALS, but I can't help but get really worried when it returns. It does come in episodes. The past 2 days have been bad. It is usually accompanied with a pretty severe squeezing headache that runs up the back of my neck/skull.
Can the neck muscles strengthen once the infection is under control?? Is this just a herx??
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Sounds like you have a muscle spazm back either on the back of your skull or your shoulders (or both). This is caused by magnesium depletion, which is caused by Lyme. Have you had a red blood cell magnesium level test?
Poke around with you knuckle. Find a spot that feels like a lump that REALLY hurts when you poke it with your knuckle? If you do, apply pressure as hard as you can and see if the pressure up your neck and skull disappears.
If its a muscle spazm and you press long enough, the 'referred pain' up your neck and over your skull (and maybe across your jaw or through the top of your ear) will be relieved.
This can be fixed and is common. Let me know what you find.
-------------------- 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 |
posted
Hi Julie, Today my headache is severe and on top of my head - migraine-like, pounding. I am still having the "head tilting"/neck weakness.
yesterday though it was running up my neck and into my skull and yes, when I rub it or apply pressure, it relieves the pain.
There is a spot that causes a lot of pain when I rub it and i do feel a hard lump. It is right where the base of the skull and neck meet...just to the left of my spine. I get scared to push on it too much because sometimes it makes the rest of my head feel funny and I'm worried it is an aggravated nerve or a blood vessel.
I have a lot of ear pain too and when I push on the neck, it relieves the ear pain as well...or sometimes when I push up into the big gland on the throat and into the jaw, it helps my ear pain.
How do you fix this?? Massage therapy? thanks so much!!!
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
posted
I should also say though that my arms are weak too. It feels like a an overwhelming weakness that hits me and I become "floppy" or like a ragdoll...that's the best way I can describe it.
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
If pressing on them relieves the pain, these are indeed muscle spazms. And they do not go away on their own. Without intervention, they tend to get worse because restrict blood flow.
Here's some options:
Trigger point injections- These are injections of Lidocaine directly into the spazm blissfully numbs the area and the needle helps break up the spazm.
I can recall having as many as 7 shots into the back of my skull at one time. Sounds scary, but when you live with this type of pain long enough, I was willing to have my head cut off to get rid of the pain.
I had them done by both my LLMD and a Pain Mgt Specialist. The effects may not be permanent depending on the severity and you may need to have it done again in 10 days. I think it took 3 or 4 rounds to get mine gone for good.
The Pain Mgt guy showed me how the entire back of your skull is covered in muscles and explained how this area can go into spazm. Quite interesting actually. But warning - Pain Mgt guys like to sneak in steriods with the lidocaine, under the euphemysm 'anti-inflammatories'. So if you go this route, scream at them 'No steroids!!!!'
Prolotherapy: Similar to Trigger Point injections, but water is used
Do it yourself: Take your knuckle, or that of a loved one, and jam it on that lump for as long as you can take it. Start on what you find at the back of your skull. The ear jaw stuff is most likely referred pain.
I know this sounds massochistic, but it really helps. It's like a thumb war - press long enough and something's got to give. And it will. Follow up with any type of lotion that has arnica or muscle relaxant and long rounds on a moist heating pad. If you have any Flexeril, now would be a good time to use it. This method works in a pinch, but may take a full day to provide full relief (vs instant relief from Trigger Point injections).
If you have a spazm near your that's radiating near your ear, it could be affecting your balance making your limbs feel disconnected and your thinking really foggy. I'm not a doctor, but I do recall feeling this way. Maybe it's what you are experiencing?
I really wouldn't recommend massage therapy, just based on my own personal experience. I tried that in desperation, and ended up having a full blown panic attack right there on the table because she messed around with my ears and made it worse.
Hope this helps. Let me know how you make out.
-------------------- 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 |
posted
This was one of my earliest indications too. I remember someone telling me, "Your head's falling over." I have done a ton of chiropractic for it.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Thanks Julie - that is helpful to know. Yes, I have balance issues, foggy thinking. My ear hurts and feels clogged - for almost 2 years now. No matter what I do, I cannot fix it! I have days that are better, but it is always there to a degree. I'll ask my LLMD about the injections next time I see him. I doubt he will do it, but maybe he can suggest someone else.
Unfortunately, I did have a cortisone shot in my neck when I first got really sick. I had no idea I had lyme! My neck was in so much pain. The shot was terrible - caused severe burning and so many more symptoms. It made everything worse and the Dr. couldn't believe it when I told him I was worse!
Robin, Did the chiropractor help? I did do chiropractic for a while when I didn't have a diagnosis and was desperate for help. It did help temporarily, but I haven't been back since being diagnosed.
Thank you all for the input!!
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
So sorry yet another has to go through this. I had a cervical epidural done when the quacks were trying to 'fix' me (before my diagnosis).
I also tried the chiropractic route for about 3 mos (again before diagnosis). The only thing that felt good was the heat they applied. Sometimes the adjustments would help because they would kind of snap my head up, but it never lasted and may have done more harm then good.
Get someone to do the knuckle thing and get yourself a good heating pad.
Also, most likely your magnesium levels are depleted. If you can't do an IV, at least try topical Magnesium oil. Your body will be better able to absorb it more than oral supplements. Apply to thin skinned areas such as wrist. As this is the reason you're getting these. You should also ask your LLMD to run a Red Blood Cell Magnesium count through LabCorp.
-------------------- 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 |
posted
Shouldn't that get better with treatment? Are you adressing co infections as well? I think injections could be a temporary relief but don't address the root cause...
Posts: 723 | From Montreal | Registered: Oct 2010
| IP: Logged |
posted
Julie, I have a picc line. Do I ask my LLMD for magnesium to inject into the picc line? I will ask him to run the red blood cell magnesium count as well. I know they did just check my magnesium, but not sure about red blood cell. Thanks for all the tips!
I stopped going to the chiropractor when I finally was diagnosed because I was afraid she'd done more harm than good, although people swear by chiropractors. She used some kind of electrical current stimulation on my upper spine (lots of problems with my upper spine too). It made my muscles spasm and now I read in Burrascano's treatment guidelines to avoid that!! Little did I know...
I do have topical magnesium. last time I used it, I felt a burning sensation on my skin and never used it again. I will have to try it again.
Thanks for all the help!!! Is your neck better now?
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I have the same thing. Left side of my neck very weak and get the awful pain in the upper atlas, where skull meets spine. This went away with abx treatment but I also think my upper cervical specialist chiropractor had a LOT to do with it getting almost 100% better. It's been a year since I've been to see him and now I'm back to where I was where my neck is concerned
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
posted
2young, Do you have windows when your neck feels normal or almost normal...or is it a constant weakness? does your neck hurt as well? My weak neck started with antibiotic treatment, although I had lots of neck pain/severe headaches prior to antibiotics.
IckyTicky, how did you find an upper cervical speacilist chiropractor? I definitely feel I may need PT. Not sure I want to go the chiropractor route again as I'm afraid the cracking of the neck did more damage.
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
posted
Hey guys, I've had 2 years of h---! with my neck and head pressure.
Tomorrow is the big day, I am going to an Upper Cervical specialist.
Montel Williams on TV said it saved his life so I am going to give it a try. Nothing to lose, and since nothing has touched this we'll see how it goes.
I'll let you know tomorrow how it went.
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
| IP: Logged |
posted
The chiropractic adjustments are temporary - I like the temporary pain relief but my neck doesn't seem to hold.
Meaning I believe more has to happen as far as treatment goes, but I don't know what at this point. Has anyone been able to fix their neck symptoms with Lyme treatment?
I suppose it matters what neck condition each of us has. I started with a year and a half of upper cervical (C1 and 2) and it didn't stop the pain. Now I get full spine adjusting, including whatever in the neck needs adjusting.
I do recall one marvelous change, when a chiropractor did an atlanto-atlas adjustment, between the skull and the top atlas vertebrae. All the color came back into my face and I was able to get up out of bed.
So there are so many angles to getting checked out, and it takes chiropractors who are very good at what they do to figure it out.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Jwall, yes my neck is better now and has been for years.
I have on occasion gotten the start of a knot after wearing my sunglasses all day during trips to our vacation home 400 miles away. (Apparently this is quite common among some truck drivers. I mentioned to a friend who is one and he said don't wear your glasses all day. You subconsciously are tightening muscles to hold the glasses up). And the knuckle routine with lotion and heat has come to the rescue.
You should ask for the RBC mag count - it's a better indicator. The regular test will not tell whats in your cells and can produce a normal result even if you're low. Since you have a picc, I would think an IV Mag chloride would be a piece of cake. But just MHO. Hope you're able to break free of this - it can be devasting to live through.
BTW - Topical magnesium can burn, which you've already experienced - I think that's why I much prefer IM or IV. IM is injected with lidocaine so no burning felt. Topically the burn is temporary - not sure if you could cut it with a carrier oil and if it would still be effective.
-------------------- 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 |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
JW an upper cervical specialist does not yank or twist your head/neck EVER. It's a very gentle approach. I had no pain at all. I won't let anyone jerk my head...that is why he is the only type of chiropractor I'll see.
Mine adjusts the upper atlas first, then gently does the rest of the spine and sometimes other joints (elbow, knee ect)
Do a search for Atlas Orthogonal Chiropractic
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
posted
Thanks, I will look into Atlas Orthogonal chiro. I should've gone that route to begin with! I never felt comfortable with someone cracking my neck.
Julie, I used the topical magnesium last night. I have the Ancient Minerals brand spray and it didn't burn this time. Do you know how much I should be applying/day?
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I never really understood the methodology, but I think it's a lot.
From their website: 8 sprays of Ancient Minerals magnesium oil delivers approximately 100mg of elemental magnesium on the skin
So you'd need to do this at least 4 times a day to try and absorb 400mg
They say to spray it in your hand and rub all over. So that's not how I've used it (and probably explains a lot).
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 |
posted
Thanks Julie for all your help! I remember reading that too when I first received it and I was confused. I'm afraid if I spray it all over and rub it in, it will burn! It was fine on my wrists.
I'll have to ask my LLMD about IV magnesium. Neck feels a bit better today - not quite so weak.
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I actually wore a neck brace for a while bc I felt like I couldn't hold my head up all day at work. At one point, it was so bad my hair even hurt - I couldn't touch it (not a pretty sight!)
Get someone to help you with those knots, and when you find yourself horizontal, spend some time with the heating pad on those lumps.
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 |
posted
My scalp hurts as well. Some days it's so painful to move one piece of hair on my head! This symptom comes and goes.
I was thinking how nice a neck brace would feel! I use my hand mostly to prop it up. the muscle on the left definitely feels strained.
took flagyl yesterday and remarkably, the pain/tightness/weakness in my upper spine, shoulders, neck area went away.
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
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!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
the muscle on the left definitely feels strained. 
Printer-friendly view of this topic