posted
My very first real noticeable symptom was my neck. It felt like it was on fire. The skin/nerves muscles.
It was so bad that I doctor hopped all over the place in tears and bathed in icy hot to dull a *little* of the pain. It hurt so bad, AND STILL DOES, that without benzos (the only thing that will take most of the pain away), I can't do anything.
I can't play with my kids, cook, clean, stay organized, walk like a normal person because I'm hunched over in PAIN.
Burning stabbing knife pains all in my neck, then recently they started in on my head, and sometimes in my lower jaw.
I read all the posts, and I read about arthritic neck problems, but nothing like mine.
How come it seems that I'm the only one out here with this problem. It makes me doubt it all sometimes. The only thing that puts me to rest is I got a CDC positive blood test.
My neck is my chief complaint. But of course, I have the twitching, BRAIN FOG (it's unreal), and I noticed the other day while sitting in the doctors office, I was staring at a sign that obvious said "Check out, this way" and looked weird, I don't know what dyslexia really "feels or looks ilke", but the letters looked "backwards" to me.
It really freaked me out.
But back to the case at point. All of you complain of tight muscles that are so painful, mostly in your legs, I feel these tight muscles in my neck.
So bad, I feel like they are going to SNAP.
Is this something that my brain is telling me to feel or is really my neck that is making my neck muscles pull and burn so badly???? Or is their bacteria in my neck? I would really like an answer to that.
I know many people have different symptoms, but why MY neck and NO one else's?
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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posted
I can relate to some degree. I used to have stabbing burning pain inside my throat(left side) and in my ears. I had numerous doctors look for infection and I was told it was all neurogenic pain. It was similar to something called glossophyarangeal neuralgia. I don't have it anymore so it wasn't permanent. I have numerous brain lesions (CDC positive for lyme also) and so I think my pain was coming from the CNS.
Have you asked your LLMD about it? It sounds really painful. (I guess you have ruled out any pinched nerve or chiropractic problem also?)
posted
I just applied as a patient to an LLMD in Tampa. They said if they get all my paperwork in time, then they hope that they can get me in by the end of the month. I've had x-rays of my neck and an MRI of my neck and brain. Everything was clear. I can tell this is neurological. I know what a pinched nerve feels like.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
i think my pain is nerve related... it doesnt feel like the bone which is what i assume you mean when you say others have arthritic pain.
If i am on the computer then I have a heating pad wrapped around my neck.... and usually one against my back too
my neck is worse and constant but it runs down my whole spine alot.
How much I can turn my neck will vary ...sometimes i can barely move it all day then it will just decide to turn... so i think mine is a nerve thing...
mostly sharp slicing pain... i have nerve pain other places and it behaves the same..
sorry i dont know how to help it other than heating pad but your not alone.
When I first started getting symptoms, it was along the trigeminal nerve in the face. The feeling in your jaw is probably the 3rd (mandibular) branch of the trigeminal nerve.
It sounds like some weird facial/neck neuralgia. I guess all the doctors weren't much help to you? (Did they ever offer a muscle relaxer or any medication for neurally mediated pain?)
I don't know if you are already on antibiotics, but I haven't had the pain since starting on antibiotics. From what I have experienced, it is unbelievable what lyme can do to your nervous system. I have had every kind of strange "paresthesias" numbness/sensations/pain all over my head and face. Nothing would surprise me.
posted
nessa, call upledger institute in west palm beach or go to their website. ask about getting into the best practitioner in your area. he/she will not be able to cure your tbi's but can definitely help out with the nerve/muscle tension and pain in your neck!
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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posted
Severe neck pain was my first symptom of lyme (unfortunately I didn't know that at the time). I had all negative neck scans, just as you.
I have a really high tolerance to pain, but this pain brought me to tears too. The only thing that helped was buying a soft-style neck brace to immobilize it as much as possible.
Over the years my neck pain has come and gone, (never even close to as severe as first episode, thank goodness). Now that I have started lyme treatment--guess where my worst herxes are??? My aching neck--oh well, soon enough I will be pain free. Good luck!
Posts: 345 | From East Coast | Registered: Apr 2008
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posted
nessa, believe me, you are not alone. If I told you what I went through, you would be shocked. my knees were burning so bad, that my skin would turn red, and I slept with ice packs on my legs. THIS stayed happening from march 2007 through August 2007, I went to 11 ducks, 2 LLMD's, and finally found a very good llmd in NYC. I was in tears 24/7, could not walk, do anything. I was depressed, everyone thought I was going crazy. I wanted to die, asked God to take my life and to take care of my kids when he takes my life. Kept praying , and now I have been under treatment for about 10 months. So, the burning in the knees is 90% gone !!!! But, they crack like crazy. I have burning in other parts of my body, but not like my knees. Even my eyelashes burned. when I breathed I felt burning. I really think it is mostly Bart. I am on levaquin (second time around), and I think my herxes are a little more intense. But, do not give up. I never thought I would be able to walk with my husband and kids ever again, but we just went to the beach last weekend. !!! So, I am now functional (still in pain though). get a gooooood doctor, that is the key. Jenin
Posts: 455 | From Maryland | Registered: Jul 2007
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posted
I have this type of pain very severely---I've had several very severe EMG and Nerve conduction studies showing Demeylination, as well as entrapped nerves, Peripheral Neuropathy and other nerve problems.
Have you seen a Neurologist? Had an EMG and other autonomic nerve studies done?
Lyrica/Neurontin and other meds. might help, but I know for me they did not....
Good luck!
Posts: 371 | From CT | Registered: Jun 2008
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posted
I would never wish this pain on anyone. It hurts so bad and I am in so much pain, I feel paralyzed from it.
I've never had any nerve conduction studies done, but if you'll read my other post, you'll see that I was fired from my Neurologist, lol.
But luckily, I think the LLMD I'm going to is an ID doc and a neurologist....so it said on a website. Maybe he can guide me through some of this.
Sometimes, I can't help but wonder if there is something worse wrong with me. The way most doctors make you feel, crazy, "it's all in your head", doesn't help you feel secure in your diagnosis.
Oh wait, don't forget, "Have you been tested for HIV?" or "It is just anxiety"
There's no professional out there to look you in the face and know you are in pain and to ensure you that it is Lyme that is literally wrecking havoc on your body.
Sometimes it seems too hard to believe that some bacteria can ruin your body....and your life....and your finances...and your relationships. Sad and unreal.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Have you tried a neurologist/chiropractor. You might get some relief there.
Posts: 2360 | From SE PA | Registered: Mar 2004
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Neck pain/tight muscles is a big symptom for my son & me. We have tried many things - meds (Lyrica, Neurontin, muscle relaxants, pain meds), massage, chiropractic, accupuncture, PT, prolotherapy, trigger point injectins, etc.
Prolotherapy has helped us the most in the long term. I take a muscle relaxant and pain meds everyday.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
You have a lot of company-burning neck pain like acid is the way I describe it. It comes from the nervous system. I have recently been trying infrared saunas which seems to take the edge off of it.
If I find a better method I will let you know. Chiropractic just made it worse.
Posts: 425 | From NY, United States | Registered: Mar 2005
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