posted
How many people here have fibromyalgia? Do you even call it fibromyalgia, since you know it is from Lyme? Any tips for dealing with the constant neck pain while I'm waiting for the antibiotics to get the Lyme under control?
Posts: 311 | From CA | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I was diagnosed with FM, but I now know it is really LD. FM is pain, something has to cause it.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I took Lyrica for a while and it is the only thing that kind of dulled the pain. Not much works on neurological pain though, which is the kind of pain you get with Lyme Disease.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Tight neck and shoulder muscles were my earliest symptom. I developed full-blown fibro a year and a half after the tickbite.
25 years later, with a new Lyme dx, its pain went to zero after one week on oral clindamycin! (150mg 3-4x/day)
I became a chiropractic patient, for spinal pain relief, when it started and still am one.
Posts: 13171 | From San Francisco | Registered: May 2006
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I'm sorry you're having such a hard time with this.
I developed what I believe is true fibromyalgia after a car accident 29 years ago where I received a major whiplash-type injury.
I was already not all that well at the time (probably candida, and more) and was having neck problems from a previous fall, poor posture, and the stress of being in college. I also had a few other traumatic events and dozens of falls and other injuries over the last 30 years.
Not sure when I was infected with Lyme and other infections, but all of this took a toll on my immune system, and probably my HPA axis, and I got gradually sicker, developing arthritis, tendonitis, inflammation, widespread muscle and joint pain.
Nothing was helping my fibro symptoms, so I began to suspect something infectious was going on, on top of the fibro. I never remember a tick bite and didn't ever develop sudden flu-like or arthritis symptoms, yet I was diagnosed with Lyme and other infections a couple of years ago.
Anyway, all that to say...it's my opinion that many times we don't just have one thing wrong with us. We know that Lyme and other infections are opportunistic and can be present without symptoms then become active when we are stressed or injured in other ways. Lyme also colonizes injured areas. Lowered immunity and chronic illness/infections also affect other systems and functions in the body, like thyroid, CNS, circulatory, where there may be inherent weakness.
I've done years of bodywork--massage, chiropractic and more, nutritional supplementation for deficiencies, healthy diet/exercise/meditation, self-care including body awareness, targeted stretching, and self-massage, heat, ice, muscle gels and creams, supplements for pain and inflammation, body-mind work, energy healing, spiritual and emotional work.
Everything helped some. My neck and upper back used to be my worst pain, but oddly enough, that's the only thing that's gotten better!
Things I would recommend for neck pain include a rice pack for warming up/relaxing the muscles in your neck. Massage and chiropractic treatments if you can afford it. Ask for exercises you can do on your own every day to help relieve muscle tension.
Also develop an awareness of where you hold tension in your body, where you tense up when you are stressed, and how your posture is--for example, slouching over the keyboard, sleeping on a pillow or in a position that pushes your neck too far forward, and carrying heavy loads that strain your neck muscles.
Once you identify any patterns that may be contributing to neck pain, you can begin to modify them.
Pain-relieving homeopathic muscle creams seem to work well for me. I also use a hand-held infrared light device that helps relax the muscles that contribute to pain. I never took pharmaceuticals for the neck or other pain, because I prefer to work on the physical cause. When it's bad I take enteric-coated aspirin or Aleve or natural pain relievers just to calm it down a bit.
Sorry for rambling. Hope there is something useful here.
Nutmeg
Posts: 386 | From WA state | Registered: May 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Janice,
What is your magnesium intake per day?
What is the type of magnesium you are taking?
Same with calcium?
What is the brand of your fish oil and how much are you taking each day?
An adjustment in any of those can make a big difference.
posted
OMG, my Lyme brain---I had just started using a magnesium lotion which was really helping, and I totally forgot about its existence today! Thanks for the reminder about magnesium! I put it on just now.
Lymetutu, is that like 7 minutes in heaven, only 12 times better? ;-)
Posts: 311 | From CA | Registered: Jul 2008
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bettyg
Unregistered
posted
i have fm in all 18 of 18 pressure points, but my lyme goes back 39 yrs.; 35 yrs. misdiagnosed by 40-50 drs.
have you had your neck recently xrayed; that showed more of what's going on there for me as well.
posted
Hi. I was dx'd with FMS. My first symptom was never ending burning neck pain, severe headaches couldn't even turn my head.
I've been treating for lyme since Oct 23, 2008 and my pain is gone. Now I know I don't have FMS or CFS.
I take 100 mgs Minocycline 2 x per day and Bactrim 2 x per day.
Good luck
Posts: 46 | From NE Ohio | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Most of us were first dx with FM. I don't think it is accurate to use the term, FM, anymore as that just falls into the umbrella dx for those with chronic infections.
Lyme is painful. The "myofascial pain" or "nerve pain" is what I talk about.
When I can, weekly massage is a wonderful help in so many ways.
A lot of pain can be from an over stressed liver. The authors below address that - and much more - including inflammation (and that can cause much pain).
You can take magnesium to bowel tolerance. Magnesium glycinate or citrate are just two of the more absorbable types.
Calcium is good to balance that, too, but I don't have details.
I am not sure that the magnesium lotion will be enough alone although it may help.
You can read more in an article search at www.vrp.com
SIMPLE TRADITIONAL FORMULAS FOR PAIN Shixiao San, Jin Lingzi San, Liang Fu Wan, and Baishao Gancao Tang
by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine, Portland, Oregon
excerpt:
. . . Corydalis is added "to increase the pain-relieving effects of this prescription."
To compare Shixiao San and Jin Lingzi San, it is helpful to examine two of the main ingredients. Yang Yifan (9) compares corydalis to trogopterus (wulingzhi):
Corydalis and trogopterus enter the liver and spleen meridians. Both are able to promote blood circulation and remove congealed blood. They are very effective for relieving pain.
Ingredients; Corydalis root, jujube seeds and Schisandra fruit.
Jujube is also called zizyphus. Schisandra is also spelled schizandra. Both can be searched at PubMed and at The One Earth Herbal Sourcebook ( http://oneearthherbs.squarespace.com )
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I was never diagnosed with Fibro, but I have bad muscle cramps and some pain. Not full blown bad though. But the muscle cramps do get pretty bad.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
fibro, my ____. it's lyme....don't know when these idiots will recognize it. (i mean the doctors).
my friend is a walking zombie because she's on all these heavyduty painkillers like oxy and all.
but again, man, what is it? she won't listen....everybody thinks i'm crazy...
you can lead a horse to water but you can't make it drink....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't think that all Fibro is Lyme. I took abx for 8 months & I didn't feel any different.
I was diagnosed with Fibro & then Lyme 9 years later. I'm still in pain...
I think there may be other causes out there that we may not know about just yet.
There are a number of other issues that can cause pain like mycoplasmas, viruses, bacteria, etc.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I tried every single thing anyone offered to me with very little success.
These medications helped me significantly for a few months each: Celexa, Neurontin, Namenda
I see a chiropractor every week for temporary relief. He adjusts my atlas, along with everything else. I think atlas adjustments are important.
Hot showers are my best friend.
I've been treating for Lyme, Babs, Bart. for one year with a little pain relief. I am hoping for much more, but I am very stressed caring for my bedridden Lymie daughter.
Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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Rocephin / Zithromax / Supps Posts: 107 | From Plainview, New York | Registered: Sep 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I was diagnosed with fibromyalgia. I believe that I have lyme induced fibromyalgia. Fibromyalgia is just a collection of symptoms with no known cause. Like Keebler said, mostly caused by infection.
My pain levels have greatly improved after nearly 3 years of treatment under an LLMD (Lyme literate medical doctor). Also with a focus on detox and methylation cycle issues.
I still have neck pain, especially while herxing on abx. I consider it to be a symptom of inflammation. Natural anti-inflammatories and sometimes trigger point therapy is helpful.
I don't do trigger point injections. I use a theracane or have my husband give me a shoulder rub. My neck pain seems to often be caused by referred pain from my shoulders.
Hang in there. It can take time to see improvmement if you've been infected for a long time.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I was dxd with FM 4 years ago after years and years of hearing "I don't know what it is"
I grew up in MD and remember having ticks several times, but no rash/flu afterwards. I just got the Lyme dx last week.
I am convinced I have Lyme induced FM.
I have been on anti-depressants that helped some pain esp Cymbalta which is known to have pain-relieving properties, Neurontin, Lyrica, Lamictal, Vicodin, Darvocet,etc. The pain meds help and none of the others had any effect.
I have tried chiroproactic, massage, and physical therapies and all provided some relief, but nothing long-term. I am still in PT, but getting tired of going 3 X a week.
Looking for an LLMD and started Doxy last week.
Am at the end of my rope and ready to give up on tryng to fight the pain. I learned to "live with pain", but sometimes the "pain does not allow me to live"
I know you all understand.
-------------------- Michele:) Posts: 30 | From York, PA | Registered: Jan 2009
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