I am so sick again that I want to see if anyone else has these sx this far out.
First, when I wake up, I burn. My spine is on fire. My hands tingle. My major joints ache and burn. My eyes are dry and sore. The back of my head feels like a baseball bat has slammed into it. Sometimes it feels icy cold and my brain feels like it is fizzy. My muscles hurt and my neck and right shoulder are tense. My legs from my hips down feel like a gazillion bees are stinging it. Not as severe or painful, but more than “my leg has fallen asleep tingles.” When I get up to walk the bones in my feet hurt. I hobble the first half hour or so. The back of my arms burn and my chest feels tight, like a truck is parked on it. My tongue also burns and my ears ring.
When I walk I feel weak and disjointed from the world. Like I am in a fog. I don’t always know where my legs are in space and time. Hard to explain. Its like I am drunk or drugged sort of. I feel very weak and dizzy, but not spinning vertigo dizzy. Just like I am under water… again, hard to explain. The walking around like that is one of my worst sx. It feels so frightening.
Of course my memory is shot. I lose everything. I cant keep up with the things I used to be able to do. Life is overwhelming but I take it in small bites.
My twins have been dx with Lyme disease. One has been fighting it for two years. One doc told me I have it. Another said no. I am back to mostly in bed today. I am too exhausted and too woozy to do much. Is anyone else this sick this far out?
I don’t want to start treatment for Lyme unless I really have to. I am praying that this is still the withdrawal.
Anyone else still feel pretty awful? Around 10 am this morning I felt at death’s door. I also have intense DR when I drive. Months ago that was better and only came every so often. Now it is every time I drive. The entire time I drive. What’s up with that??
You have all been so supportive of my journey. Can you tell me if this sounds normal at 26 months out? This degree of debilitation?
Thanks everyone.
I am curled in bed, searching for my Forever Dog online. Max, the dog from AHAN.org that I fell in love with was fostered and his foster mommy wants to keep him. I am happy he found his forever home. Now to find my Forever Dog. 🙂
Yet that’s all b/w
Sent from my iPhone
Mt muscle and nerve pain is worse in this 3rd year. My mouth still burns and my head still buzzes. but I see improvement. perseverance still has some pretty good waves. she told me to give this 5 year and that’s the mind set I have taken on. yes I do believe we get hit this hard this far out. it really sucks I know. I have no idea how we made it this far. just hang on Jen. We will get better. Xo
Sorry on all the misspelled words. I’m ok my iPad and I still have very blurry vision also. Lol
I have that too. Tight band around head also. A handful of other sx I didn’t go into.
Five years huh. Wow. Ok. So be it. Thanks for your help. Hold on. I will too. This fucker doesn’t get to win. And I’m Not apologizing for my French. Lol
I’ll be three years free on the 24th. Yes, I’m still symptomatic, but certainly better than I was on zero day. My burning skin went away around six months free. My tight, painful muscles remain. I’ve begun doing yoga to see if that will help my muscles and with neuroplasticity. No lasting results yet, but I always feel better at the end of class compared to when I walked in.
I am 6 years out and still experience much of that – was bedridden pretty much until 2 years ago when I started reading about nutrition for nerve damage. Today I can still have down days but they are fewer and happen mostly when I over exert or pick up a virus….
Hey Jennifer, It sounds like you have the physical stuff worse than me but I wanted to share a little if it might provide some comfort. First off I want to say that at 25 months off I have seen some of my biggest improvements this passed week. Most of the good stuff has been in the areas of mental improvements. I realize only now how my brain had shut down all thinking related to anything but my immediate experience. For two years+ I lived and suffered but was never really aware of my past, future, or the lives of others in any real way. Over the last week my ability to connect with time as a continuum has returned. The DP/DR have abated significantly. I’m starting to feel like Scott again and not in the strange detached way that I’ve existed in for a LOOONG time. I still wake with extreme head pressure, dizziness, soar achiness in my neck and back of my head radiating down into my shoulders. About 6 months ago a raging burning nerve pain began in one dematome of my left thigh but nowhere else. The raging burning is no longer an issue but the area is left with a weird irritated nerve pain. Is not so bad and is often eclipsed by my weird head stuff. Generally all of the muscles and joints in my body are in alot of pain despite not having injured any and being in good physical shape. Also there are times when a strange pain/achiness/twisting sensation becomes really bad in the core of my body, kind of around my middle spine but radiating into all the muscles of my chest. Breathing is still very tight and constricted as well.
Anyway, I hope this provides some comfort. I’m not sure if it would help but I have Jack Hobson’s email and he has always been wonderful responding to my querries for support. I know that he had alot of physical stuff that seems to have lasted a long time but he is doing much better. Matt Samet also has been really helpful when I’ve written him.
Let me know if you want Jack’s email. I know this sucks but things will get better. And I have had my streaches of loosing faith as well. I’m glad I didn’t .
Be Well, Scott.
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The vagal nerve gets damaged by the benzos. They stop the parasympathetic influence that nerve has on the heart and will cause heart problems if you don’t die of cancer first. My experience. If they do that to the heart, then it happens with all the organs as that nerve innervates all the organs. Those drugs damage the intestines. Been doing a lot of research on it lately as I’ve done a whole body detoxing program called The Natural Healing Paradigm for 5.5 years and have found out that my intestines were so badly damaged from the drug that is what caused the vagal nerve to do what it’s doing. Same symptoms. Same scenario with me. Very painful. Badly damaged intestines that spelled out the word CANCER in the end. Just get it cleaned out via instructions in the Natural Healing Paradigm, but you have to be off the drugs first.
I think anyone could use the lymephotos.com website to help with getting rid of Lyme. The medical’s drugs won’t do the job right. I don’t seem to have joint problems with it, but Lyme can affect everyone in a little different way. It’s possible that’s part of the problem.
I’m doing the methylcobalamine form of B12 and will add the stabilized R lipoic acid–300 to 600 mg a day to that, but no improvements yet. It takes nerve tissue so long to heal and regenerate. I’d say the only way to obtain freedom from those terrible drug is to get the drugs gone, get the inside of the body cleaned out and get the nutrients in there that will heal the body as well as the nerve. Have yourself checked for Lyme disease, because it can affect the CNS. Medical doctors are not going to suspect it, so it’s the patient that has to be aware and take the initiative.
I’ve used Dr. Billie J, Sahley’s protocol for pain that’s and amino acid– DLPA. You really have to do her whole protocol for pain. It’s available from The Pain and Stress Center.
That far out and still with symptoms? Are you all functional though???
Oh yes! I drove across the entire nation for three months. I can do anything if I set my mind to it and ask God to help me.