posted
I want to know if this is normal fore lyme and/or Bartonella, or if I should start exploring other potential causes.
My muscles, especially in my upper back and neck, are rigid and full of knots, and intensely painful. Every chiropractor, masseuse and physical therapist I've seen says the same thing the first time they feel those areas with their hands: "OH....MY....GOD."
They say I have the hardest, most knotted muscles/fascia that they've ever encountered, and want to know how it is that I'm still functioning and working.
The people I know with Lyme have muscle and joint pain, but I havent met anyone with this much rigidity. Antibiotics have helped every other symptom enormously, and I believe I have almost wiped this out. I still have joint pain and these muscle issues though, and I don't know if it's just lingering damage or has an active cause. I don't want to stay on antibiotics forever.
I see a masseuse, chiropractor, take NSAIDS, and try to stay active. What else can I do?
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi Jennifer. I have had this too. and got the same "OH....MY....GOD." from everyone who works on me too. I was told for 18 years it was fibromyalgia/myofascial pain syndrome. Ironically when I was dx'd with lyme and started abx the pain went to my joints but my ropy/knotted muscles feel almost normal. The first time i got an inkling as to what it felt like to be normal was after about 4/5 months of abx. I still sometimes get this when I herx, and I can't believe I lived all those years feeling like that constantly.
I found nsaids/ibuprofen made me worse-- magnesium helps a lot (I like magnesium optimizer by Jarrow) fish oil helped a great deal (I like carlson med omega liquid) epsom baths help (this is magnesium too) , and cvs has a an epsom cream you can rub on especially tight muscles. There is a product called topricin, that I sometimes would have my massage therapist use on especially ropey spots when she did deep tissue work. I would use it myself later in the day and the next day. It doesn't really help the pain, but it helps you from getting that bruised feeling you sometimes get from massage.
And the thing that helped the most is good sleep! are you sleeping? a tempurpedic or other pressure point free mattress along with a sleep help has been the best thing for my sore muscles
But I think it is lyme and co and when you hit the right combo of abx it will release. but these other things can help along the way.
but you described the pain perfectly... I totally feel your pain.
Posts: 1728 | From USA | Registered: May 2011
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Yes!! I have this bad.
My LLMD says its Bartonella (which I def agree with) and that rifampin works best for it. Rifampin has great penetration.
I use a foam roller (amazon) and use it for myfascial release where you focus on the knots and let the foam roller go deep.
It hurts and I still have issues. I also believe nerves and twitching causes the muscles to contract and convulse to the point of death.
This is my worst symptom and has stopped me from working out, gaining strength, playing softball, football, basketball... anything.
I really miss playing sports.
By the way... is your IT band (side of legs) bad for you too? My neck and triceps are bad. Outer thighs too.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Kudzuslipper- thank you for all the advice! I do take magnesium and take epsom salt baths, which helps a little. The Epsom cream sounds great! I too was told it was fibro/mps. I was actually worse prior to antibiotics, and though it's improved, it's still pretty intolerable. I think the only reason I'm still functioning is that you somehow gain super human endurance when you become a mother!
Cane fan- I'm on Rifampin, but am only doing 3 months, combined with clarithromycin. I have a foam roller, but I don't really like it. Maybe I need to watch a video on how to use it properly or something. Yes, my legs are bad. Everything is tight, knotty and sore, but my upper back and neck are so bad that they minimize everything else. My masseuse says I have nerves entrapped between the fascia in my neck and my god, that gives me so much referred pain that presents as headaches and scalp pain. I get referred pain elsewhere too, but it makes it hardest to function and think when the pain is in my head.
Well, hopefully the rifampin will help....I thought about going to a pain management specialist, but I'm afraid they'll start me on narcotics and I'm afraid to go that route (I know myself- too much of an addictive personality).
Thank you again for the help!
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Look into systemic enzymes too (Serratia Serrapeptase & Boluoke)
And possibly muscle relaxants.
Agree with epsom salt baths and magnesium. But I believe it all stems from Bart in the brain... nervous system over-fires for far too long and you get these knots and muscle death.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Bart and Lyme can suck the iron out of you body. Make sure these aren't charlie horse type muscle spasms.
Posts: 482 | From Oregon | Registered: Feb 2011
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