Does anyone have terrible neuropathic pain and NO joint or muscle pain?
This is what I have-terrible burning pain in underarms,arms, legs and numb feet.
I also have terrible headaches and tingling,burning chilled head. It is so hard to explain.
My head feels foggy alot but I don't seem to have cognitive issues.
The woozy,disoriented feeling in my head can be really brutal .
I don't know what is worse the head issues or the neuropathic pain.
It seems like everyone here has joint and/or muscle issues.
My muscles and joints seem fine and I can walk fine . All my pain is internal...
Does ANYONE have terrible nerve pain and head issues like me?????
I have had 2 positive Lyme tests but don't remember a bite-I have no idea when I got it...
Has ANYTHING helped you??
Thanks for any help.
Laurie
Posted by notkrazybrian (Member # 10621) on :
YES I DO!!! Brian
Posted by Monica922 (Member # 13496) on :
Hi Laurie I have the smae kind of reaction. Most of my symptoms are in my nervous system. I did IV Rocephin for three months and now doryx. The doryx sesms to be helping with the neuropathy a little.
Posted by chamade (Member # 11472) on :
My main problem is neuropathic pain in my legs and arms. My hands are really sensitive to temperature as well. Recently I started feeling pin prick sensation around my torso when I stretch it. I guess I will be burning everywhere pretty soon. Nothing has touched this symptom for me. The head problems went away quickly for me. No joint/muscle pain here.
Posted by feelfit (Member # 12770) on :
I have the exact same head stuff. My body feels great, but the head things have been there 24/7 since at least this past December. I have some tingling and zaps, but no burning pain.
Feelfit Posted by laurie sm (Member # 14584) on :
feelfit-do you feel like you are in a constant fog in your head? I never did drugs but I almost feel that's what it would be like.
It is such an awful indescribable feeling and nothing helps it except when I am sleeping.
No one understands what I am talking about and I know it is a real symptom.
If i just had the pains it would be more bearable but the head thing is driving me insane.
My husband thinks I am a drama queen! I would love for him to feel my pain and take mine away from me for just one hour a day.
Then he would be more understanding!
Laurie
Posted by Bitrex (Member # 13103) on :
Most of my problems are neurological, though I had some musculoskeletal pain that seems to have resolved with time. I get a lot of vertigo and inner ear type symptoms, but I also have symptoms like you describe. The burning feels like someone has applied a hot iron to a part of my forehead for a few seconds. Also a weird numbness and tightness, kind of like your scalp is suddenly two sizes too small for your head, accompanied by a tingling feeling. My best guess is that it's caused by some kind of irritation/inflammation of the cranial nerves that send sensation from the face/head to the brain, particularly cranial nerve VII. In some Lyme patients that's the nerve that goes haywire and causes the stereotypical Bell's palsy.
Posted by kelmo (Member # 8797) on :
I am really concerned and frustrated because this is my daughter's biggest issue right now.
It seems there is incredible head pain/pressure, and it goes down her spine.
I think it wouldn't be long before it turns into some kind of encephalitis or meningitis. Just waiting for the fever to hit.
Went to see LLMD, he is testing for West Nile, because we live in a high incidence area, and she also has nausea with this.
I would love for her to get a spinal MRI
Posted by njlymemom (Member # 15088) on :
The head issues are the worst... I had all the neuro symptoms long before I had the joint and muscle pain...one of the reasons for the misdiagnosis of MS.
Just a heads up (no pun intended) about encephalitis - my spect shows that I am living with severe encephalitis - and I don't get fevers....just alot of other problems - pain, pressure, memory loss, seizures, vision loss
Posted by feelfit (Member # 12770) on :
Laurie,
My head feels pressurized at times, other times it feels like ice picks are being poked in different places.
The weirdest is, and this is the best that I can describe it, my head feels like my stomach would feel decending the highest point on a roller coaster....so yeah, kinda high, indescribable really.
My coordination feels a little weird with this too.
My SPECT Scan was normal, as was my MRI, my MRA showed funky blood vessels suggesting vasculitis.
LLMD said not to worry about the MRA because metabolically, my brain is working fine....
Sure doesn't feel like it!
Posted by feelfit (Member # 12770) on :
Bitrex-
I also have the scalp too tight feeling...two sizes too small, pigtails too tight....or it feels like I am wearing a hat when I am not!
Feelfit Posted by savebabe (Member # 9847) on :
Yup...neuropathy and headaches are my worst symptoms. Maybe we got bit by the same tick on LI?
Anyway, I have found that hitting not only babs, but bart has really helped. In fact, Dr. B once told me that more ticks on LI carry bart than lyme, so maybe treating co-infections would help.
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![[bonk]](graemlins/bonk.gif)
I had all the neuro symptoms long before I had the joint and muscle pain...one of the reasons for the misdiagnosis of MS.![[Eek!]](eek.gif)