I am new here and also new to posting so sorry for the long one but I need help understanding what is happening to me.
About 2 1/2 years ago, I had a tooth that cracked that required a root canal and crown. Soon after, I started experiencing slight jaw pain in the mornings and a few bad headaches. About 2 months later I was in a very minor rear end accident. Within 15 minutes, I had neck pain around C5/C6. Dr. said whiplash, fine, neck was sore but not too bad.
About 2 months later, went back to dentist saying tooth was not feeling good, she said tooth was fine but noticed that I was showing severe signs of TMJ, I was having daily headaches and neck still hurt. Went to TMJ doc and started treatment for that. After about 1 year of that with no headache relief, I started seeing a chiropractor while continuing TMJ treatment. Chiropractor did relieve some neck pain but headaches continued. Then went to neuorolgist. He did basically no tests and diagnosed chronic tension headaches and put me on basically the same meds the TMJ Dr. had me try.
Then May of this year I found a lump in my throat. I was a 4cm thyroid nodule that had to be removed. (benign) During the stress of this, my TMJ, neck pain and headaches increased to the point that I was taking vicoden daily.
I got married Aug 2 of this year. On Aug 8, I joined the gym to get in shape for our Hawaii honeymoon. (despite my pain I was motivated!)Well, I injured my knee. This is the 4th time in 6 years this has happened, the first time diagnosed as a knee sprain but it took 2 years to recover so for it to happen now, I was pretty devastated. So this time after 4 Dr.'s and 2 MRI's, the new diagnosis was a bulging disk L5/S1. I guess the fact that I could not straighten my leg, move my foot, toes and my whole leg was burning didn't clue them in earlier.
Since then, things have gone downhill. I went to the chiroprator that I had seen for my neck injury to help with this low back one. Well, that did help the leg but aggrivated the neck pain and also a previous thorassic injury(unknown). Now I have pain radiating into both arms, most severly though into head, I have tremors, muscle twitches, Chills, night sweats, hot flashes, skin sensation changes on face and back, pins and needles in back of head, memory problems, and now, chronic sinusitis and a double ear infection. Also many other neuro problems that keep creeping up every day. They did a brain and c-spine MRI which showed disk bulge C5/C6 and Pavlov cyst C6/C7 but they don't think that is causing any problems. (yeah)
I have been to so many Dr.'s trying to figure out what is happening to me, many which just look at me funny or tell me to go to a psychiatrist, so I did. He thinks that I have a "post concussion syndrome" however I have only one memory of having a concussion 6 years ago with slurring speech for 6 mo.
My chiropractor sent me yesterday to a new Dr. who she trusts and she diagnosed me with central pain syndrome. I am not sure this fits and she did not have time to go over with me what this acually means yet so I have been looking online and what I find scares me. I am now on so many meds that I feel like a zombie but without the pain relief. Does anyone out there have experience w/ this? I could use some help sorting this out.
Although your symptoms may have appeared/intensifed around the time of the root canal and the auto accident, it may be the stress of these events impacted your immune system setting other things (possibly infections) into motion.
The symptoms you describe TMJ, headaches, benign thyroid nodules, muscle and joint problems, unknown "injuries", radiating pain, tremors, muscle twitches, chills, night sweats, hot flashes, skin sensation changes on face and back, pins and needles in back of head, memory problems, chronic sinusitis and a double ear infection are all symptoms of Lyme Disease which can be caused by one of more bacterial infections in the body.
The fact that your doctors are only finding "damage" and not the "cause of the damage" suggests that you may benefit from seeing a lyme literate doctor (most doctors don't have the training or the experience to diagnose lyme as it is a clinical diagnosis because most testing is unreliable).
Good news is that with antibiotic treatment, unless there's permenant damage, symptoms can go away with treatment.
I would encourage you to thoroughly check out the lyme boards!
wow you have certainly been thru it. the one thing that HAS to take place in order to actually aquire central pain syndrome itself would be some level of real affectation or damage to whats calledf the spinothalamic tract within your spinal cord. this is just what creates it. i was dxed with central pain after my spinal cord was damaged due to having to have a surgery that was needed to try and remove what was bascially a glob of blood vessels that had formed within my actual spinal cord. this area took the biggest hit. i awoke from anesthesia with this hidious burning stinging pain that at the time i assumed it6 was just all part of my post op crap since they DIDjust cut into my central nervous system the pain was just excruciating from many angles. it wasn't til i was in a rehab hospital and the post op crap started to actually go away but that screaming burning and stinging type pain just got much much worse that my NS Dxed me with the central pain syndrome.
it is just a very specific syndrome that gets triggered by affectation to a very specific area of your cord. you would have HAD to have suffered that affectation/damage to that spinothalamic part of your cord in order to have even had the chance to get it,you know what i mean? there is an anterior(right behind the vertebral column) tract and also another that sits more laterally towardsthe back of the cord that are the same tract. either one could be affected and central could result. given the mess you have inyour c spine,anything is indeed possible. have you actually looked up central pain syndrome itself and read all the symptoms and how the pain presents? from what you described here,it really doesn't sound like true central but possibly you may have had some level of sympathetic nervous system damage that belive me,can create its very own spontaneously fired and triggered pain syndromes,even in our mouths(it all depends upon just where that SNS damage is,mine just happens to cross over part of my face to the left eye but over the upper part of my mouth too). my SNS was also damaged and believe me,just having a simple drill and fill done on an upper tooth actually created its very own spontaneously triggered horrid pain syndrome that actually took over the right upper(where the fill occured) and also the right lower as well. it was absolutley insane,let me tell ya.
absolutely nothing touched that pain,not even the stronger narcotics. it wasn't til i saw an endodontist who told me how to actually use sensodyne toothpaste the 'right' way(they do not tell you this on the label)? that i actually finally got rid of this nastyness. it took about one month.
i honestly think,just from what you have described here that your sympathetic nervous system has been either damaged or is being affected in some way(the damage can also happen from just having blood vessels affected or damaged too). it does run thru the c spine area and junctions out at the c 8 nerve level. you could actually have what is called RSD,and not central pain. i actually have both syndromes(lucky me i know) but the difference bteween the two is with the central,all you have is pain,pure pain with NO skin changes or swelling or really anything that 'looks' any different than your normal skin. i have this in my left arm in patches and also over both shoulder blades. BUT, RSD,which is actually triggered from SNS damage or affectation WOULD have the symptoms you have described here. they match with the more prominant RSD symptoms and not so much the central. i have the RSD crap in my right knee. it has skin color changes,swelling,spasms,hypersensitivity to touch(like central does too) and ungodly pain that also does not respond to narcotics either.
just some info for ya to research on yourself. you mentioned a 'pavlov" cyst? i do think you ment tarlov? just where is that located in regards to l cation within your spine. it is IN the actual cord itself? if you have actual copies of all your test results? mainly the MRIs where things were identified like that cyst and herniations? if you don;t have these,you REALLY do need to start obtaining all of your very own copies of any and all testing results done on you,believe me,it does help alot in many ways to just have this all in one little file you can just atke with you to appts and stuff?
if you do have them or get them,could you please type out the actual summaries of the more important ones here so i can see how the interpretting rad saw this stuff? it would really help me to help you in the very best ways right now. the way they actually word things does help in really knowing how they see this stuff and what it may be simply affecting by its location in your cord or spine.
so sorry you are having to go thru all this crap,i do know how much it all sucks to have to deal with. i would also maybe hold off on having anymore adjustments done on that c spine area til you know more about just what you are dealing with here too ya know? in some cases,any chiro adjustments can make a situation much worse. you just need to be careful. just knowing the overall severity of your findings would help alot. the more info you can give me the bestter i will be able to try and help you with this,ya know? Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
I am confused as well. I don't remember any specific injury to my spinal cord. They are saying perhaps that it is caused by the old concussion and then maybe w/ this lastest car accident, that also gave me one too.
I also have a terrible mouth pain. The tooth that had the root canal didn't feel right still so about a year ago went to endo and he tested it, along with my other teeth. Since that, ALL of my upper teeth hurt all. This was recently made much worse by the streroid injection they did for my lower back injury. Within an hour of that my upper teeth were in pain like thier roots were exposed. I wanted to pull them out myself.They still are in more pain than before but not as bad as that, but no one can explain why I would have had that reation to the injection.
Another thing I did forget to mention is sometime since all this started, my tongue pushes against the roof of my mouth, HARD, all day. They have ruled out dystonia but no one can tell me why that is happening or what damage that might be doing to have constant pressure on my palate. My tongue is now so enlarged from the "workout" that they have suggested they shrink it w/ radio fruequency.
The only place that I have had "burning" pain is in my r leg which so far is resolving. That was sensitive to touch but no color changes, etc. That MRI said
L5/S1 A mild circumfererential disk bulge and concomitant right paracentral disk protrusion is noted seen to contact the central left S1 nerve root without significant displacement (5/23 &6/23) Bilateteral neuroforamina are patent.
The C-spine MRI - Minimal C5-C6 disk bulge without significant canal comprimise. There is no neuroforamina narrowing. Incidentally noted ia a perineural cyst within the right foramina of C6/C7 measuring approx 5 mm.
I have done some reading on central pain syndrome but from what I have read, it doesn't sound like me. I have many places in my body that are affected, no one "area." I am not sure if this is thier way of at least giving what I have a name since they are having such a hard time diagnosing me.
... This was recently made much worse by the streroid injection they did for my lower back injury. Within an hour of that my upper teeth were in pain like thier roots were exposed. I wanted to pull them out myself.They still are in more pain than before but not as bad as that, but no one can explain why I would have had that reation to the injection....
Lyme disease...steroid treatment creates an environment in which the Lyme bacteria thrive and grow so symptoms get worse. People with Lyme Disease should not be treated with steroids.
I have read only a little about lyme and how some of my symptoms fit so I will take a closer look into it. Thanks you! Do you think that the reaction to steroids could have been that quick, 1 hour? They are also talking about putting me on them to help w/ whatever is going on in my sinus and both ears, guess I should hold off for now on that!
I would definitely hold off on the steroids as it is not worth the risk...IF you do indeed have Lyme Disease, it could move your condition into the advanced stages which can result in death...which supposedly is "rare"...but why take that chance?
You ask if it is possible to experience a bad reaction in an hour? I don't know but Lyme is circulated throughout the body via the blood stream. How long does it take for the blood to circulate once through the body?
Sinus infections are very common with LD...I can't speak from first hand experience, but many have taken antibiotics for their sinus infections, only to have the sinus (and other) symptoms get worse, and then get better. The reason for this is that when the person starts taking antibiotics, it begins killing off the unwelcome bacteria. Dead bacteria produces toxins which the kidneys and the liver dispose of. If there is a very large amount of dead bacteria, the kidneys and the liver can't get rid of it fast enough and the symptoms worsen temporarily.
When people experience undiagnosed problems in multiple body systems, like you yourself have experienced, it often occurs after a stressful event...illness, car accident, unhappy anniversary, etc. And it may be difficult for someone to understand why Lyme would be the culprit...but when one is under stress (or under the "influence" of steriods), the body's immune system becomes overwhelmed, or ineffective, and unwelcome bacteria thrive and grow and are circulated by the blood to the brain, the bones, the nerves, the digestive system, the reproductive system, etc. And because (among other things) that bacteria may have 300 or more different strains, it doesn't show up in any tests! So while doctors are taking test after test after test, those little devils are having a party and are eating nerves, bones, cartilege, etc. and otherwise raising Cain and no one is the wiser.
Simplified version, definitely not clinical, but hopefully, you get the idea.
PS You might want to check the Lyme Boards to see what antibiotic Lymies with sinus infections have found to be effective. If your sinus infection responds to treatment, your other symptoms may abate as well....but do some more reading as there is more to it than that.
Last edited by bethsheba; 11-08-2008 at 08:46 AM.
Reason: I need to go back to school to learn how to type!
Your state government has some useful info about LD in your state...although I frequently pull up federal government sources, I am not as confident doing so (in keeping with Board Rules) with state government info...but you might want to look for that information yourself.
Thank you so much for advice! I will certantly do some reading! Although psyciatrist today thinks I have undiagnosed ADD and may be one reason I now have a hard time reading and understanding. (never used to have a problem, don't think you can "catch" ADD) at this point though willing to explore all options.
I am on antibiotics now an have appt with ENT in 2 wks, should know at least by then if it's touching the sinus thing.
Thanks for the reply, it is scary dealing w/ this type of thing and nice to know I am not alone.
...Thank you so much for advice! I will certantly do some reading!
You're welcome, but yes, it is only some advice as we are not medical people here. And please do alot of reading...too many people on these boards do some "checking" only to stop "checking" before they find the truth.
I don't think you have ADD..Lyme can present with many neurological problems, and reading and understanding are just two of them. BEWARE as I suspect many with undiagnosed Lyme are written off as having Alzheimer's Disease or Dementia so it is very important to address these symptoms before you can no longer advocate for yourself!
It's good to know you are on antibiotics, and I would think that would help (at least keep the problem from getting worse), but do keep reading. From what I understand they use specific antibiotics to treat these infections and it depends on the symptoms. As I've alluded to above, Lyme can bring with it different bacterial infections and therefore all the symptoms may not respond to one type of antibiotic...and antibiotic treatment is much longer for a Lyme infection than it would be for another type of bacteria (this is due to the life cycle of the bacteria).
No, you are not alone...you have alot of company as over 27,000 people in the US were diagnosed with this condition last year alone...and they were the "lucky" ones! I have read some reports that suggest that there may 25 people with undiagnosed lyme to every 1 person that has been diagnosed with lyme.
Again, you don't know you have lyme...only a Lyme Literate Medical Doctor can make that diagnosis...but Lyme Disease can be treated and if caught early enough, can be cured...
Take care hpatrice...and may you find your answers soon.
I just came across some information that says that in the normal resting state (versus exercising state), that the heart is capable of pumping about 5 litres of blood, or its total blood volume through the heart within one minute...so in one hour the blood in your body would have circulated, roughly, 60 times.
Thought you may want to know. Oh, and I would assume this would be someome with a "healthy" body.
Thanks for the info. I have done some reading about lyme, some of it fits. I have appt w/ Dr. on Friday. I will ask to be tested for that among some other ideas I have found from these boards, B-12, mag, etc. I know there are a lot of false negatives for lyme though. I have also found a lyme specialist in the area I might follow up with if this Dr. doesn't take it seriously. The current antibiotic they have me on for the sinus thing I have is levquin which I think is one they also use for lyme, haven't seen a difference in any symptoms yet but it's only been a week!
It's good that you have found a lyme specialist in your area...did you "check him out" on the Lyme Boards...some LLMDs are better than others from what I hear...and the good ones are worth seeing!
Caught your post on the sleep boards...and just for your info, many people have described the symptoms you have described there. The only ones who have had their symptoms respond to treatment (to the best of my knowledge), are people who are being treated for Lyme.
Yeah, I saw that too. It is very interesting. Psychiatrist I am seeing, I spoke to him about this, (didn't want to tell regular docs as they already think the standard depression, anxiety, etc) and he doesn't know exactly what to say. But I had told him that after one of these vibrating events, I had a hallucination. I guess he said that is called a hypnogognic hallucination.
Anyways, pretty weird stuff and that also has resolved since starting the prozac. (I hope!)
Today they had me do a 24 hr urine test for copper, I guess to see if it's Wilson's disease. Don't think so but worth a shot!