posted
Well it's that time again... HERX time... UGH!!! It's like clockwork every 4 weeks...and it hits.
The last two have brought a lot of pain... especially in my neck, shoulders, and back. My SPINE is killing me!! Does anyone elses spine hurt horribly?? What is this??
posted
Don't know your gender or age but have you been checked via MRI for spine problems, like compression fractures, bulging discs etc? Have you tried chiropractic or physical therapy or massage? I also think that a premenstrual time of the month increases inflammation, which can affect spinal problems and muscles.
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posted
I am female and have had MRI's of my spine which were totally normal. I've tried chiopractic, massage, and am set up to do Acupuncture in a few weeks. The massage made me worse.
It only comes when I'm herxing which does seem to correlate somewhat with my menstruation. Are these flares "herx's" or something caused from Premenses or menstural cycle or BOTH?
My first herx was around day 5 on abx, then again at around 1 month, and now again at 2 months. It's hard to tell what's going on cause it is almost time for my period too...
posted
I do REALLY wonder if my symptoms are hormone related. I've always wondered this.
When I first got sick it was about 8 weeks after having my second child. Definately a time of hormonal shifts and regulating. Was sure it was my thyroid. Thyroid fine.
I went into a remission for 18 months. Then decide to go back on Birth Control. Literally a week into the Birth Control symptoms re emerge. Stopped taking the birth control, but symptoms have persisted and gotten worse.
Been tested again for everything under the sun, and Lyme is the only culprit.
Is it just a coincidence that during times or horonal shift that I got sick? Or is there some relation to hormonal issues and lyme?
Very confused cause until I started abx I didn't really noticed any pattern in my flares. It was more of a constant sickness. But once I started abx, my flares or Herx's became more predictable happening every 3-4 weeks.
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I have this too. My MRI did show bulging disks in my neck but my neurologist said that would only account fot the probs in my arm not down my back. My back upper back Mri showed degenerative changes but again he said it was slight.
So I guess that only leaves Lyme or co's. I didn't have this pain until after being put on steroids for the bulging disks then all of a sudden I started getting this horrible pain in my neck, back, and shoulders, even down my chest.
posted
I would get a copy of the MRI report yourself, because sometimes they tell patients that their spinal MRI is "normal" when there are slight disc bulgings or degenerative changes that they consider "normal for age." You don't say your age though...
I also first got sick right after a hormonal event, a miscarriage at 49.
I don't really care about labels anymore. The premenstrual week can worsen Lyme symptoms, and it can worse autoimmune symptoms (I and my daughter have lupus as well as Lyme, and we are quite definite on that after many many years of figuring it out). Whether you want to call it a herx, or just call it increased inflammation from hormones, doesn't really matter...you need relief!
My spine is also killing me, but all the time. I have 3 compression fractures (one big one from a traumatic fall), bulging discs, osteoarthritis with extra bone that indents my spinal cord, and also osteoporosis.
That said, I still have to figure out what pain is from a disease process (Lyme, lupus) and what is not, and how they interact.
For me, and probably for you, it may come down to muscle problems. Even though I have a lot of reasons for spine pain, the most troublesome problems are from muscle spasms. When I have pain, my left arm and leg are way shorter than my right!
I tried chiropractic, which lasted a few hours at best. Massage gave me a lot of neuro symptoms. I tried physical therapy which really, really made me worse.
Now, I have finally found a PT who understands and knows what she is doing. She does a lot of manual work, but follows what I say about what I can tolerate. With some trust built up, I tolerate a few more symptoms in the interest of getting aligned and building strength, to later reduce symptoms. It is a circle, or a catch 22 if you will.
She also found that my C1 is "translated," meaning it slides over too far to the right. No neurologist or MRI was going to give me this information. She holds it and does this repetive squatting thing that pulls the C1 back over and presto, much better !
She also found that my C2 was twisted, which I am doing exercise for. They hurt, and I get twitchy all over.
I have used a tiny fraction of a Baclofen pill (10mg) for some of the PT sessions to keep my muscles from spasming from the massage and exercises.
None of this may be relevant but the main points are:
1) hormones are probably relevant, and interact with other problems like Lyme and lupus
2) find a really good PT for spinal problems, preferably one who does manual work as well at regular PT stuff
3) muscles/fascia are probably the problem
4) Lyme, and inactivity can throw our body's alignment, flexibility and strength way off, which affects muscles throughout your body
5) there is hope, but you might have to go through some pain (too much is a bad sign, but some pain is necessary) to get better
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posted
I am only 27 years old, and I have gotten copies of my MRI which are normal. My spinal xray shows mild degenerative changes but everything else was normal.
I think I read that spine pain is a symptoms of one of the coinfections? Anyone know about this?
posted
Yep I've had my ANA tested twice already in the past 6 months. NEGATIVE. Rheum assured me it wasn't autoimmune. Also my LLMD is also a RHEUM so I will ask him.
posted
sorry to chime in with my own problems, but shosty you have struck a proverbial nerve with your story.
I have almost identical issues. lyme compounded by hla genes and high sed rate.
xray and mri show bulging discs, one very twisted congenital defect vertabrae, and spinal stenosis, and possible simple fractures in two vertabrae after probably from a fifty foot fall I took rock climbing.
I did trigger point, massage, accupuncture, nsaids till I had two ulcers removed from stomach, and pt which made it worse than ever.
finally ended up on pain meds, work but hate the dependance factor.
I am intrigued by the fact that you now are seeing good results from a pt.
Is there any special way that I could find a pt that could help me.
Did you just go to another one, or have one suggested by llmd, a friend?
You have given me hope that a PT could help me if I find the right one.
Looking for suggestions on how to shape my search.
Thanks for any and all replies
Posts: 6 | From arcadia, ok | Registered: Sep 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Ana can be anything. It depends on your titer and site identity of cells, how far they investigate. A low titer is common in Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Shosty
Unregistered
posted
ANA is often indicative of autoimmune problems, or an infection, but can also be low positive for healthy people. Normal is 1:40 or less. Mine is actually 1:5120 recently. I've had other tests that show lupus, especially skin biopsy, and I get sick in the sun. But also had very positive Lyme tests going back to 2001. Hard to unravel these things for any of us.
Ucostudent, I was referred to the PT by a chiropractor, but had heard she was good from others. Manual therapy is not offered by that many PT's in the way that she does it. She does not have fancy equipment (ultrasound, TENS, machines etc.) but uses her hands, and simple exercises done carefully and sequentially so that any strengthening is only done when things are aligned properly. Sorry to repeat myself.
I wanted to use a PT at a major rehab hospital clinic. They had told me that only their clinic had the expertise to help me. But driving caused so many problems for me (as did the sun while driving) that I could not get to that clinic, which is an hour away.
I tried another local PT and almost literally ran away, then waited another 3 years before daring to try.
I am still having a lot of pain, and my neurological stuff is crazy. I was getting jiggly eyes (nystagmus), chills and nausea if I moved my neck wrong. Twisting it too far, or getting jostled, would make me feel sick in a weird way for weeks, and flashing lights also bothered me during those times. Weird.
Anyway, I am noticing more strength in my neck and back, better posture, I can turn my neck much farther, and the neuro symptoms either don't occur as much or don't last more than 30 minutes or so.
The PT caused pain afterward that was almost unbearable at first, like pain that makes you vomit. It still causes pain, but not as bad. I do not get as many chills when touched now either.
Still a work in progress, but am hopeful. Maybe it could help you. I would ask for someone who is good with manual therapy. This is not massage. What she does does not necessarily feel good. She gets my C1 vertebrae back over, for instance, with her hands.
She also works with my pelvis, and back, which all helps my neck too.
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