666921 tn?1254990618

pain - head/neck

I am getting 'very bad' pain in head/neck area - I know I've had this for 3 years but it feels 'different' somehow - maybe
just forgot how bad I can feel!

How is everyone else - head/neck pain - wise?

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428506 tn?1296557399
I currently refer to my neck as "popcorn neck."  It crackles when I move it, and while that could be Father Time marching on, the correlation between the loudness of my neck and illness makes me think it's more likely Lyme related.

After I started treatment, I did notice a worsening in neck pain (which is now gone, it's more just stiff/loud now).  For me, it felt like there was a fluid pillar in the side of my neck, and if I turned it to that side (it was on the R), it would really smart!  Enough so that when I drove, I would try to use my mirrors more and turn with my shoulders to look.

When you say pain in your head, I take it not a normal headache?  I've had tons of cranial symptoms, ranging from bizarre to painful to frightening.  For over a year, I've had a tingling/crawling feeling inside of my head (sort of like pins and needles, but actually within my brain!  Ick!).  It is almost always present, only on my best days has it gone away.  I've also had burning, tingling, and partial loss of sensation on different parts of my head, scalp, face, even lips.  Everywhere except the top of my nose and my ears.  I've also had on and off facial flushing, where I get very very red (I'm fair enough to really notice this.)  I've also had problems with pressure in my head, where it starts to feel like my head is "gonna blow."  That was driving me nuts in the fall, I used ice packs on my head but was still fighting tears back and very, VERY cranky :)  

I've had cognitive problems as well, not so surprising given all of the weirdness from the neck up.  That is starting to get better now, but there were days when I was stuttering and unable to recite my own phone number.  It is terrifying, but so far, I don't think I've done any (or at least not much!) irreversible damage.  On my good days, my mind still seems to be there.

My symptoms changed a lot after I started treatment.  Again, hopefully the "different" feeling is a good sign, but I know it's still early to tell much.  Hang in there.

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Avatar universal
I get it too.

I've posted about it elsewhere and they also say it is babseia but I'm always always negative.

I do know on a fibro forum many people complain about the weird snaps, cracks, pops, glass shattering sharp sounds emanating from the back of the neck at the base of the head. It's awfully scary.

My llmd recently ordered an x-ray. But what would it show and what could be done. I've tried all the Lyme stuff she has in her arsenal -- I believe. Only time will tell.

Keep on striving for answers and remedies. About all we can do isn't it?

Yoga helps a lot. Be positive. Fight on.
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Avatar universal
I've read (somewhere) that the current tests for babesia only detect three strains of it, and so you can have it but not show positive on the test you are given.  If I run across that reference, I'll [try to remember to] send it to you.
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Avatar universal
I wonder how many of those people you mentioned on a forum really have lyme but were misdiagnosed with FMS.
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666921 tn?1254990618

my neck feels sort of solid on left side- with pain in bottom of skull - [ the bulbous part]

Today I went for a short walk with my 'better half & dog' - it was such hard work!!
My legs felt like lead - never been this bad - they ache a lot too - I was almost not moving where I was walking so slowly.

I have had pain in left ear also blocked feeling in both ears - this morning I had a strange sensation around my right cheekbone/ear area - like something was moving in there.

I do have 'numbness' sensations all over my head/face - they don't last long .

The swelling in right side of neck -collarbone - area [ I have asked about this in previous post] - is making me feel more anxious [only when I look at it] but anxiety is not what is causing this new leg pain/heaviness.

I am more tired than usual - zero energy.  

I have to have a chest x-ray and blood tests - G.P. ordered these - but by the time I get them done and have results its going to be like two/three weeks .

I also have permanent - 'slight nausea' .   Feeling around chest area that I can't stand to have a 'bra' on! {I do get this quite a lot esp. when menses is due]. I don't get acid reflux.

I thought I would write all this down so that I might get some more 'in-put - opinions' from you all.

I know I keep saying it BUT I do appreciate you all being there - VERY MUCH.

My headache is changing all the time! it can be stabbing -all over the top- it sometimes is slight throbbing in my temples [mostly right] - the bottom of my skull is pretty much permanent for the past few days  -  lots of crackling when I move my head side to side [like trying to put my ear to my shoulder] movement.

Last night - after 'epsom salts' bath - I was relaxing on couch when suddenly there was a sort of 'jump' sensation - hard to explain - in the side of my hand -just down from little finger - then it was a cold sensation - it was actually quite pleasant!

I think I'd better leave it at that or you may not finish reading!!  Let alone reply!

Helpful - 0
Avatar universal
My headaches were variable and severe at first.  After weeks of that, they lessened (even before I found my way to an LLMD and got treatment), but I still was fuzzybrained and had no stamina.  I also had Babesiosis, so I can't tell which symptoms belong just to Lyme.  

Everyone is different in the presentation of the disease(s), but your symptoms are not markedly different from others I have heard.  I began to keep notes through the day of how I felt, because I was unable to recall my symptoms later in order to tell the many doctors I consulted.  I was going through those notes just the other day and am surprised at how many things I have forgotten -- including earaches, which I remember posting recently that I had not particularly had previously -- but I did have them.  Lyme symptoms seem to jump around the body, differently for everyone.

I got a magnesium deficiency when I was first ill, and recommend Epsom salt baths or footbaths -- to my knowledge, they can't hurt you, and may help.  Hang in there.  The three longest parts of Lyme are:  (1) getting diagnosed; (2) waiting for the next dr's appointment; and (3) waiting for the abx to kick in!  Not necessarily in that order, but that's how it feels sometimes.

Take care.
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