I don't get the joint pain, the sore muscles, anything skeletal or muscle just purely neurological. Wondering if there is anyone else out there like that?
Also, I have only had these issues + bite(s) for just over a year now which may be part of it.
Posted by Ocean (Member # 3496) on :
Hey Toppers,
For the first 12 years mine was like that too. Fatigue, anxiety, depression, memory problems, muscle twitches, ect.
Then almost twelve years later, I had 2 episodes of my right knee getting swollen, painful and red. I couldn't put weight on it.
Around that same time, I started getting cyclic muscle pain in my legs/feet that has stayed.
Symptoms can change over time. Not sure how long you've had it, but I know others on here also do not have a problem with a lot of pain/joint issues.
Take care, Ocean
Posted by Toppers (Member # 20083) on :
yeah i've had this stuff for about a year but it's multiplying and now I'm finally feeling stiff/strange stuff in my body, but it has been only neuro up until now.
Posted by venus (Member # 16991) on :
yes, i am right there with you. my neuro stuff is off the charts, but I can still walk, run, etc. I have no muscle pain.
PM is you need ot talk.
Posted by tickssuck (Member # 15388) on :
Yes, completely neuro here. My CNS is completely shot. I have not had any arthritic symptoms, so far. The only real pain I have is unrelenting neck pain.
My neuro symptoms are off the charts and with me 24/7. I wake up every day wishing I could see improvement with my overly-charged nervous system, I'm miserable. Muscle twitching, tremors, numbness/tingling, palps, jumpiness, my entire CNS is agitated to some degree ALL THE TIME. I have been on orals for 15 months and feel like I'm getting nowhere. I consult with a new LLMD next month for IV consideration; I don't know what else to do at this point. Good luck to you. TS
Posted by Kerryblue (Member # 4077) on :
Hi, I live in horrible muscle pain/fatigue the list is endless as most. I actually feel most is do to neurological, our neurotransmitters. They say may be more that hundred. They only know few as serotonin,etc.We have long way to go.
Being that most of us will not see in lifetime. Drs. even admit that have no idea how much we need healthy transmitters. I think we all have neuro problems, just come out in diff. ways. I also have all your symptoms now in late stage Lyme. My pain has been relentless. When asked my patients beyond the pain what bothers you most it memory,loss word,sentences++
Gather much about pride since we are sooo aware. Diff. with later stage alzheimer's do not know.
Take care, Sorry for all you frustration about this crud!!!!!!!!!! Huggggggsssss, to all in need!!Kerry
Posted by Ms. Myoclonus (Member # 6750) on :
Hey there, Yeah, I was about 90% neuro symptoms. I developed myoclonus (involuntary muscle jerking), blurred vision, vertigo, brain fog, fatigue, etc. I never had the arthritis, which I think delayed my diagnosis. I had it for four years before I was diagnosed.
I was in antibiotic treatment for four years (both oral and intramuscular injections). I never did IV because it was never available to me. I was afraid I'd never recover without IV, but the IM injections and pulsing antibiotics worked wonders. (Although the antibiotic treatment did make me significantly sicker when I first started). I also did a lot of supportive alternative therapies and herbs.
I am now 100% prescription drug free and have been off antibiotics for over a year. I' m doing well, and functioning at about 99% of my former Lyme self.
bye, Ms. Myoclonus
Posted by Pinelady (Member # 18524) on :
I am about where you are maybe a little longer.
I did not get the arthritis symptoms until now in
treatment. Dx Jan. Started trmt. April. Before that
it was all neuro. Doc said I would get worse before
better. And so far he has been right on. Neuro
better but that has started so worse. Looking ahead.
Posted by liesandmorelies (Member # 15323) on :
Mine was strictly neuro at first. Now I have both neuro and muscular and skeletal. I have been in treatment for a little over a year now.
Some of my neuro symptoms are much better, but my new muscular and skeletal issues are worse. I am hopeful though and keeping my chin up.
I hope you are able to rid the neuro symptoms and pray you don't also get the muscular and skeletal issues.
Posted by gridmonster (Member # 19280) on :
I too, started out with neuro symptoms. Fatigue, tremor, loss of fine motor control in one hand, and difficulty sleeping.
Posted by LisaS (Member # 10581) on :
I was completely neuro for 18 years. Then an er doc gave me steroids for bulging disks. Now for the last 7 months I have it all! Neuro and arthitis and pains I never though could exist. Never do steroids.
Posted by Starfall1969 (Member # 17353) on :
Most of mine now seems to be neuro; a lot of the joint pain and stuff has gone away with treatment.
I still have a lot of air hunger, visual symptoms, feeling spacey/lightheaded, stuff like that.
Posted by peacemama (Member # 17666) on :
Was completely neuro until the CNS damage. A little joint pain. Lots of muscle weakness.
But the joint pain big time? Not much.
Failure more than pain. I can do major yoga workshops some days. Others I can't walk without help.
I've been sick from 24 years. First 22 were all psych.
Posted by bv (Member # 9578) on :
Yes. terrible muscle twitches in legs, burning skin all over my body & floaters in my eyes.
Doc says muscle twitches & burning skin are BB infection of peripheral nerves.
Posted by BugBarb (Member # 210) on :
Started out as tingling on my back and spread to entire body, typical peripheral neuropathy...itching, burning, stabbing pain, crawling feeling....I'm on 3200mg of neurontin for the neuro symptoms.
Started ceftin six months ago, now have fatigue, muscle aching, head pressure, irritability for two or more weeks out of every month. This month, I'm going into week three of being herx sick.
Miserable disease with a cure that makes me feel ten times worse than before I started antibiotics.
Posted by swedish lyme sufferer (Member # 14579) on :