I have spoken about an extreme tension in my body.
I know it is somehow part of the lyme.
It is crazy how tense it becomes, like frozen.
Does anyone experience this, know what exactly is the causes of this one symptom? I am very curious about this one because I want to get rid of it big time!
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hello,
my whole pelvic area freezes so much so that sometimes i almost cant urinate. Usually happens more with a herx. But i often say i feel like the tin man from the wizzard of OZ.
not sure if thats the kind of tension you mean. If so then im glad that you posted this tonite.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Yes. I experience this sometimes while herxing.
Valium helps but is of course only a bandaid .
abx and or other treatments to the root cuase.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I think I understand what you mean. My body tends to just become a ball of tense nerves and muscles. I used to not even recognize it because I just thought "man I am hurting" "Or my legs feel like lead"
Then I realized as I was trying to relax I couldn't relax my muscles, if I did I would begin jerking and twitching uncontrollably.
Many times when the tenseness occurs, 4 to 5 times a day, I lie in bed trying to relax and my body just seems frozen. Yes I can move my extremeties etc but it seems like a delayed reaction rather than my brain telling it to move and it automatically doing it.
It seems like it takes all thought focused on that movement to make it happen. This occured when I first became sick in 89 but was much more severe then, actually had the nurses in the hospital having to turn me and put me on the bedpan. And I was only 22 at the time. My symptoms baffled all the docs at our little rural hospital at the time. Was never diagnosed with anything but fever of unknown origin, arthralgia, myalgia, and rash to palms of hand and soles of feet.
They did ask about a tick bite, which was unusual for that time considering I live in Ky and it was early in the lyme days. Unfortuneatly since I never saw one it was dismissed. At that time though, if it had been positive, the lack of knowledge of treating probably would not have been as aggressive as what it was. They thought it was some type of toxic shock from the birth of my daughter a couple of months before.
Thank God I was treated aggressively with the right IV meds and then orals on my three hospital stays. The symptoms would disappear, I would go home and within a week be back for the very same thing though not as intense. After the 3rd time I had decided to go to a larger hospital if it recurred as by that time the doc was kind of blowing me off, was very strict in pain control meds and seemed to think that was what I was looking for.
Three months after that I had a miscarriage, began to battle bouts of depression, energy level would wax and wane, massive headaches, corneal abrasions and uveitis with no explained cause, cholycistitis, you name it......
Was still going to the same doc who said it was chronic fatigue of being a mother of two and working full time and was given an antidepressant that did nothing so I learned to cope with it rather than going back to be told I was depressed and nothing was wrong.
After a major car accident in 2002 with multiple broken bones, much damage and reconstruction to my teeth ( which now I know was done very wrong, filled my mouth with mercury) and two cervical spine grafts, the disease went full blown.
Fortunately I am one of the blessed ones to find out within 6 months I actually had lyme. Did my own research on the net, esp this forum, put the illness in 89 into perspective and found a LLMD. Began the whole gammut of antibiotics, orals, IM and IV only to herx really badly on some, find some relief in others but had to discontinue because ins wouldn't pay or liver enzymes would sky rocket. Played that game for over a year.
Started seeing a chiro who does muscle testing and homeo treatment and within six month saw tremendous improvent. Unfortunately my brain kept telling me I was SO much better I could try to work part time, raise four kids (all of which have lyme) so I stopped seeing anyone. Now I have relapsed but am back on the road to recovery.
I havent done antibiotics for well over a year. My body just cant handle them. Currently looking into rife and other homeo treatments.
Unsure at this point if I am actually a lyme baby because my mother exhibits the very same symptoms I have had and now have when I flare. She and my brothers also have classic lyme symptoms and when muscle tested for them by my chiro they turned out positive.
But trying to convince them to at least get tesed or to seek treatment is like preaching to the choir. They are so hung up on conventional medicine and refuse to beleive.
My illness in 89 sure sounds RMSF to me, now that I know the symptoms. The rash has come back to my hands though not as severe. It is now more of a slapped hand appearance that turns white when pressed with my finger then to a blotchy red again.
Well didnt mean to type my life story in response to your questions! As far as the muscle/nerve tension I have found the only thing that truly works for me is Valium and my pain med. I tried going off of it and did for about 5 weeks but ended up getting back on it. My lyme is very nuero. Also take an antidepressant which I know is kind of a touchy subject on the forum but right now it is what I need.
A few weeks ago before gettting back on those meds I just could not force myself to get out of the house unless I had to. Unnatural fear of something but I couldnt say what. I do know though it IS NOT me but this disease causing the mind games and that makes it easier to bear.
Even when I get my body relaxed enough my mind goes at marathon speed without the two meds. Like you, no amt of relaxation techniques work. I do read the bible quite a bit, esp Matthew and Luke because those chapters talk alot about healing.
Not sure if I have helped any with my babbling.
God Bless!!!
Cheryl
Posts: 204 | From kentucky | Registered: May 2003
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I have recently allowed myself to take a pain med when I need it and also I received xanax as well. I have not wanted to take these things, but I simply must.
I am losing my Lyme NP soon and started flagyl today. I'll have this flagyl and bicillin twice a week for the next five weeks. I am considering that at that time, I will have been under abx treatment close to 7 months, and just take this as a sign to try the more alternative route for the next 7 months. But if I relapse, I will seek out another llmd and maybe even have to move back to the northeast to do it!
I so well know that feeling you describe about the fears of leaving the house and just that whole thing that seems to be for just no reason at all. So that is why I have begun xanax and will also take a pain med when needed.
I am greatly disappointed in this situation of lyme. I have had it likely most of my life for certain. Mine is also very neuro. But it is just awful to finally receive a diagnosis that fits perfectly then to meet up with all of this controversy about it, thus further invalidation. It just doesn't make sense one bit.
But I take inspiration in your story and I thank you much for sharing it. Even though no one wants to experience these things, it kind of helps in some way to learn that the strangeness of this tension and anxiety is simply a part of the disease and it is no reason to go beat myself up about it.
posted
Cheryl, that was quite a story; glad you are better now. Please use the enter key more often to avoid long paragraphs for us neuro lyme folks ok and double space just like you are doing...thanks a million.
Tension, my sciatic left thigh is the worst. I can't turn over in bed. Pain is unbelievable...just like a severe charlie horse. If I bend over, I can't straighten up without it going out of place & pure pain again. Good luck to you.
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