I have battled with neck pain and scapula pain for several years now since getting sick with Lyme and co. Its always on the right side of my neck and I have severely knotted up muscles all the way up my scapula into my neck.
After 6 weeks of Mepron and Zith added to my IV doxy in February/March this year, this pain signifcantly decreased, but I had to stop Mepron and Zith due to ringing in my ears.
I also could not take Biaxin, so my doctor started me on malarone with the doxy.
I started the malarone 6 days ago, and my neck pain and scapula pain went through the roof, and its been going on for 6 days without relief.
I just want to cry because nothing is relieving it. I and using a powerful Brookstone massager which does not help, and went for a massage yesterday and my pain is still an 8/10.
Its bringing me to tears!
Tindamax also helps my neck pain, but I can't take it with the malarone right now as it hurts my gut too much.
I cannot turn my head to the right at the moment its so stiff!
I don't know if this is Lyme or Babesia flaring, whether its a herx or just one of the infections getting worse.
Has anyone else had this pain? Anything help it?? Posted by bigstan (Member # 11699) on :
^
Posted by GretaM (Member # 40917) on :
Oceangirl-sometimes I get the bad neck pain, it is so stiff I can't bend it. Do you have headaches or head pressure with it?
Does an ice gel pack on your neck help, or is it better with heat?
Posted by oceangirlSA (Member # 40873) on :
Greta,
At the moment I am getting headaches at the back of my head that move around my head. I have tried heat (bed buddy) and it does not help. I haven't tried ice though.
The pain radiates from my neck all the way down my nerve pathway into my scapula and its sharp when I move it, but it just burns and throbs when I don't.
I have a prescription compounded pain gel which I use, but it only takes the edge off, and doesn't help the neck pain or stiffness.
I have never had the pain last this long before and I have not had it this bad for about 18 months. It usually comes and goes at a much lower level, but its been one symptom that has never gone away in 2 years of lyme treatment, which is why I am thinking it must be babesia as I have not treated the babesia until now.
Bigstan, I sure hope it is a herx. I haven't herxed in a long time, but maybe the malarone has triggered one.
Posted by Marnie (Member # 773) on :
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Posted by oceangirlSA (Member # 40873) on :
Hi Marnie
Thanks for that video! Yes, I do have trigger points in those areas and in my rhomboids.
The problem is that no treatment reduces the pain, and the trigger points flare and become extremely painful when my lyme symptoms flare.
I have had tons of treatment - massage, trigger point injections, but nothing takes them away.
I was told by one LLMD that inflammation was the root cause of the trigger points and pain.
I just wish I knew though which infection was causing the inflammation so I could get rid of it. Recent treatment for babesia seemed to help but when I stopped, the problem got worse.
Posted by lpkayak (Member # 5230) on :
I wonder if muscle relaxants would help you thru if it is a herx
I used to use skelaxin very intermittently thru my lyme tx. Something has changed now and i need it everyday
I have neck and upper body spasms but they seem different fromyours...mine radiste out from my right rotator cuff and ido have mild shoulder arthritis
My oruginal lyme pain was half way down my right scpula near the spinal column-it was a very specific space only about the size of a cherry-but it was severe and went away with tx
Way back i took flexeril for spasms and it worked really well and iloved it until i realized i had no memory of the time i was on it and i found out i had been doing wierd things...like driving
So i wont take that anymore unless someone is caring for me. I especially liked it cuz i could sleep even tho i had the pain
I dont know how.either would react to your meds so be sure to check that out if you decide to try them
Good luck. I hope you figure it out
Posted by oceangirlSA (Member # 40873) on :
LP,
Thanks - I think I am going to ask my doc for some skelaxin.
I used to use Flexeril as well, but it just knocked me out and I haven't used it for a while now so it is sure to kick my butt.
I checked out skelaxin in terms of drug interactions and its works fine with what I am on right now, so I will ask for a script.
Thanks for that suggestion!
Posted by applewine (Member # 26220) on :
There are message therapists which are well educated in treating the cause of muscle trigger points that have the "CMTPT" certification. I'm sending a PM with more information.
You may also consider that the medications may cause myalgia and side effects.
You may also want to wait until the new nano-trap antigen test comes out to confirm infection. Best wishes.
Posted by oceangirlSA (Member # 40873) on :
Applewine, what is the new nano-trap antigen test?
Is it for Lyme?
Posted by applewine (Member # 26220) on :
quote:Originally posted by oceangirlSA: Applewine, what is the new nano-trap antigen test?
Is it for Lyme?
Ceres Nano is developing the first test to look after the actual presence of infection rather than antibodies. At least a reliable antigen test. This is supposed to allow early detection and also bring clarity to the issue of testing and diagnosis.
This was done using George Mason University technology. You can Google search and find news articles about it.
It is supposed to come out this summer according to the latest. Hopefully it will not be delayed any more.
Posted by Robin123 (Member # 9197) on :
The Advanced Laboratory Services lab in PA already has an antigen test out; it is able to culture the bacteria. This new test would then be the 2nd antigen one.
I have the neck pain too. I recall when I tried Natural Calm magnesium that all my muscles just relaxed. Then I got sick on that magnesium and ad to switch to another form. I can handle that one but it doesn't make my muscles relax.
I wonder about the reason for the location of the pain - whether it has anything to do with us already having tight muscles in the area. The bacteria like to go where there is not much circulation, ie not much oxygen getting through. That neck area in me was tight before Lyme hit.
I've been able to stretch out other areas in me and relieve the pain. But I haven't been able to stretch out the neck area - dicey there.
Hm - one more comment - when I went on oral clindamycin, all pain stopped. So maybe it is a matter of getting the treatment right?
Posted by springshowers (Member # 19863) on :
quote: The bacteria like to go where there is not much circulation, ie not much oxygen getting through. That neck area in me was tight before Lyme hit.
Yes yes yes I have CCSVI Low blood flow and dieseae all now settles in between brain and heart and my neck hurts a lot. I'm thinking if chiropractic to help some but but sure I can handle it. !
I use cold laser but due to herx reactions. - confirming the gathering there. I can't use it much. And only on surface settings For now.
Posted by oceangirlSA (Member # 40873) on :
Since I started this thread, I have been going to trigger point therapy for a month now, 3 days per week.
I found an excellent chiropractor and acupuncturist who is using needles to deactivate my trigger points. His skill is really good and he definitely is deactivating the trigger points, but they just come right back after 24 hours.
It is so frustrating to know that it can work but it doesn't last!
He said the blood flow to my muscles is very good, but he said I have tons and tons of trigger points - too many to count.
I think what you said Robin is most likely the issue - getting the treatment right. I think infection is the source of my muscle pain, and since I am already on IV doxy, I can only think its Bart or Babesia causing the muscle pain as the doxy just does not touch it.
I have also increased my magnesium by taking lots of epsom salts baths, and increasing my supplementation, but so far it has not helped.
I will continue the accupuncture dry needling as it does give me some temporary relief in the meantime.
Springshowers, how do you know you have CCSVI and how is it diagnosed? What is it?
Posted by lymeinhell (Member # 4622) on :
I would suggest 2 things - 1. Getting the magnesium to where it counts - INSIDE the blood cells. Can you get a magnesium IV? My LLMD gave me several, and coupled with weekly IM mag injections I started giving to myself, I was able to restore my magnesium levels to healthy, and keep the trigger points from returning. I had refused to try the IV for more than a year - what an idiot. 20 minutes, tiny needle in hand. It's a no brainer.
2. Get a mini-trampoline (rebounder), and start using it daily, even just for a few minutes. I had frozen shoulder and mystery upper arm pain that went away after just a few minutes on the trampoline. I swear by it. You can spend $30 for a cheap one, or $200 on a good one. Either way, it's worth every stinkin penny.
Posted by LisaK (Member # 41384) on :
I have had this pain, but not nearly as bad as you describe. so sorry you are going through this!
hugs
Posted by springshowers (Member # 19863) on :
Have you tried chiro and physical therapy combo. ?
I'm finding after so long of avoiding the trauma of chiro Due to chrinic widesspresd pain and I just couldn't tolerate it
That I need it The chiro can adjust alignment to help muscles not be compensating so much and relax them
It may not fully erradicate all issues as the neck is such a hot spot for this disease. But I could help.
They can do tens stim , uktrasound , cold laser , heat , cold packs , stretching , as well as adjusting.
I'm starting with this and first session was kinda hard but I couldn't believed the relief too in tension and crackling noise in my ears when I turn my head and in the tightness etc. I wi be going once or twice a week. I have my low back to deal with too since I had surgery and this Disease can cause extra trauma and problems to the spine
Just an idea I found a place that bills as medical PT and they throw in chiro as part if It so my insurance covers it all Posted by springshowers (Member # 19863) on :
Also agree treating the neck and the biofilms raft love that area can help. It can be tough depending on how long you have been ill. Don't ignore biofilm treatment and don't wait as they can end up attaching and building and being harder to treat later so sooner the better.
Posted by Kudzuslipper (Member # 31915) on :
Hi Ocean. I totally understand what you're describing. I wish I had an answer. It does sound like a Herx or flare. I was recently on zyth and on day 3 all my muscle pain melted away... But then I got dizzy and had to switch. But those days were awesome (other than be dizzy)
I think the muscle relaxer is a good idea. I also want to throw out a brand of mag. that works well for me. It's jarrow magnesium optimizer. It has oddly low levels of magnesium but it also has potassium and tourine in it and it really helps take the edge off for me.
And also if you can have your massage therapist traction where your neck meets your head ( you know that amazing thing they do when they cradle your head with their hand?)I find that helps a lot! But most massage therapists don't do it for long enough. If they can do it for 15/20 minutes it helps and releases the neck and down to the scapula.... Sometimes. But like everything it only helps for a while... My dr. Wants me to try zyth again, cause of the release... But I'm worried about that.
Posted by oceangirlSA (Member # 40873) on :
Lymeinhell, I am definitely going to ask my LLMD about the IV magnesium next week when I see him. My RBC magnesium testing came back on the low end of normal.
I love your idea of a mini-trampoline! I had frozen should too recently but PT fixed it 90%! But on another thread a trampoline was suggested for swollen lymph nodes which I have too, so this is a great idea! Thank you!
Springshowers, I have run out of all my PT visits for this year already and the chiropractor only does a teeny tiny adjustment, just to satisfy my insurance requirements.
I went to PT for my neck for 4 months three years ago for these same problems before I knew I had lyme and it didn't to a thing. It feels good for a few hours, and then just goes back its normal state again.
Kudzu, I bought a collar a while ago, on Amazon that you can inflate and it does a gentle traction so maybe I will try that again. Do you have Bart? Zith always hits Bart for me, but when I stop, my symptoms just return.
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