posted
Hi all. Went to LLMD to discuss possibility of relapse. She says no way to test so started doxy. No relief yet but my main symptom is severe arm pain (on the top of my arm where the deltoid ends.)
It's muscle pain. It radiates down my arm and up into my neck. Can barely move my arms.
I'm back on magnesium. I've tried ice, heat, curcumin, regular nsaids. (I'm already on tramadol for my smashed vertebrae pain. It is not touching this pain.)
I am in agony, new doc tomorrow--limb specialist. (What is that?) Any suggestions for symptom relief on my arms? I am desperate. Thanks in advance.
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Breaking this up for easier reading for many here. - Robin
[ 03-25-2014, 02:19 PM: Message edited by: Robin123 ]
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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posted
I had severe left shoulder and all down arm migrating muscle pains and neuropathy when Bb symptoms hit hard last summer.
A physical therapist did some simple movement tests and found that a certain vertebrae area was causing at least the shoulder/arm neuropathy.
He said physical therapy would help, however I had read that lyme (I didn't tell him I suspected Bb), can cause inflammation in the spinal column, usually lodging in one spot or another, and the inflammation presses on the nerves and affects usually just one side.
If you have a damaged vertebrae in the same area, it may be inflamed and swollen and causing this.
You tried curcumin. I use turmeric (curcumin a part of that)from Source Naturals and Kyolic garlic (formula 100) and NOW resveratrol (from J. Knotweed) to reduce inflammation.
These took away all muscle pain and most of the neuropathy for me within 10 days, and I still take these herbs.
If you have a smashed vertebrae, it may be swelling-inflammation causing pain, or the smashed vertebrae may be causing it with or without inflammation.
Nothing like tylenol or alleve helped me at all.
Posts: 254 | From North Carolina | Registered: Nov 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i will follow this thread. i have been dealing with similar pain for 18 months or so. PT made it worse. a soft tissue steroid shot put me in bed for 10 days
i have found just doing what i need to do for daily living is all i acna take. it keeps me stretched almost to where i need to be-putting deoderant on is hard and washing back etc is hard
reaching to back of fridge or to upper cuboards is hard
not doing is a problem cuz it freezes up so i do what i need to do but actually execising puts me back in bed-even when the pt was only stretching and then i couldnt take care of myself...
i wish i had the answer and hope one of you finds it. there is someone else here now who is getting pt for it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
thanks both of you. I have tried my own chair yoga stretching. it hurts so bad to do it but thought it might help. doing it, when I turn my neck,
I get spinal pain in the middle of my shoulder blades (my other symptom) and when I turn it in another certain prescribed way, the pain shoots down my shoulder and arm.
I think I hurt my neck (smashed bones are T12, not near the other pain) somehow, or lyme is in my neck.
I am thinking not to tell the doctor tomorrow that I'm on doxy. How do yall feel about withholding that from this "physical rehabilitation specialist" doctor?
[ 03-25-2014, 02:18 PM: Message edited by: Robin123 ]
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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posted
I have been doing physical rehab for frozen left shoulder for about 3-4 weeks, with some progress but it stiffens up when I miss a day of stretching.
I told my physical therapist, but I don't think she thought much about it. Remember, that doctors don't know anything about lyme and this includes physical therapists.
posted
Doc says probable rotator cuff injury, pt recommended. Doing a cervical mri to check out the neck/back issue. Probably unrelated to the arm pain, though possible if herniated disc. He agreed with me that the pain mgmt. guy saying it's fibromyalgia is not right. Thank goodness for that. (We did not speak of Lyme.) He mentioned Medrol and I said no, he said fine.
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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posted
Beth, have you tried the turmeric (curcumin) for at least a week/10 days? I would add the Kyolic garlic, formula 100, and the NOW Resveratrol from Jap. Knotweed for the same week or 10 days.
If these don't help the pain, then it may not be from inflammation, though inflammation can press on the nerves and cause extreme muscle aches and neuropathy. I know, as I had them.
The MRI sounds good. And the physical therapist should be able to tell you exactly where your nerves are being pinched. But unless you rule out inflammation from Bb, you might get into surgery or some unnecessary strong drugs.
My opinion, of course, but I am anti-surgery and anti-drugs unless no other recourse.
Posts: 254 | From North Carolina | Registered: Nov 2013
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Beth, even if your doctor thinks you may have a rotator cuff injury, there are still some things you could do on your own which would NOT make things worse.
Nancy has some good advice about treating inflammation. However, if you decide to try the supplements she recommends, be sure to start only one at a time, to see how you do with them.
For example, when I took turmeric I got loose stools the same day. When I tried Resveratrol I got awful kidney pain after ramping up to four tablets daily. I stopped everything until I felt better, then I tried one tablet several days later, and it happened again.
An over the counter supplement that has helped me tremendously is Wobenzym, which is a blend of systemic enzymes that reduces inflammmation and pain.
Physicians in Europe frequently prescribe this, as it has few side effects. You can look for reviews of it at iHerb.com and you can google for Wobenzym pain to find many articles.
Another thing that I know would help your shoulder and back is PEMF, pulsed electromagnetic field therapy. I bought a SOTA Magnetic Pulser, which is FDA approved. It is not as strong as the professional models, but is less expensive.
This is simply a machine that gives a pulse of magnetic energy every five seconds, using a hand held paddle you place on the skin. You can find info at http://www.sota.com/magnetic-pulser.html
The way it works on the body, is that it adjusts the electromagnetic charge on the body's cells, so that nutrients, minerals, and waste products can pass through the cell walls better. Oxygen, blood sugar, and minerals go through the cell walls into the cells, where the mitochondria use them to make energy. Waste products exit. With this improved circulation, the cells function better and injuries heal much faster.
I fixed my knee pain with PEMF, and a number of other things too. If everyone had this in their first aid kit, doctors would lose alot of business.
Nancy, although you may give good information, many people choose to follow their doctor's advice. Hey, they're paying good money for that advice, can you blame them.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I know ppl dx with rotator cuff injury who had surgery and it didnt work-just be careful and check everything else out first
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thanks Carol for all that wonderful information.
I have something going on in my spinal column since I started taking artemisinin, which moves up and down about 8 inches depending on when I take the ART.
I understand that nutrients/meds move more slowly in the spinal column CNS, so that paddle thing sounds good.
Also, I read that if you exercise within half hour of taking some nutrient/med, that it opens up the capillaries and gets it to the tissues better/faster.
These forums are so helpful.
About good information: I tell what works for me, you tell what works for you. At least we are not choosing blindly or following a doctor blindly. We know what works for SOMEONE
Posts: 254 | From North Carolina | Registered: Nov 2013
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posted
Resveratrol, I use NOW brand (from cuspidatum polygonum - jap. knotweed). I don't know if it would make a difference, Carol, in the brand.
The bottle sugg dosage is 1 cap/daily and that is all I take. I have been taking it for 6 months with no bad effects.
However, Resveratrol (from knotweed, there is some from grapeseed that is not the same) is not only anti-inflammatory, it is also anti-spirochetal. So you might hertz from it, if your Bb load is high. Good point, Carol, to take one new med at a time, to see how it affects you.
One side effect, it is supposed to contain SIRT that mimics calories, and over the last 6 months I have lost significant weight. Not sure if it was from the Resveratrol or anti-inflammation diet (Dr. S diet, Maryland), or both.
Posts: 254 | From North Carolina | Registered: Nov 2013
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Nancy, regarding the time I tried Resveratrol, I was attempting to do Stephen Buhner's protocol, which recommends ramping up to four capsules of each herb, four times daily.
I used the brand he recommended, Source Naturals. Resveratrol is a potent antioxidant, and it certainly did something for me...my brain started working again. But that benefit went away when I stopped the Resveratrol.
Please, if you have pain, consider the PEMF.
p.s. I think you mean "herx," from Jarische-Herxheimer reaction.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
It sounds like you may have thoracic outlet syndrome- which is very painful and many Dr's miss this diagnosis.
A torn rotator cuff usually hurts more at night when you lay down
Thoracic outlet (TOS) can feel like a knife in your shoulder blades. Often 1 arm will "go numb" .
Do you sit hunched over a computer, or do repetitive movements with your arms? Certain jobs are more prone to TOS
Not everything is Lyme!
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Carol, do you mean you took 4 capsules 4x a day=16?
That does sound like an awful lot. I was just self-diagnosing & treating, and I just used the bottle suggested dosage.
Only a few things have helped the brain fog. The quickest is the apple seeds. I think the artemisinin is helping some.
And early on, andrographis seemed to help, but I started to feel bad from it after a month or so, and now just take it occasionally to feel sharper.
Beths - I agree that not everything is lyme. A lot of these systemic things like yeast are caused or exacerbated by Bb infection, I think, but the usual systemic cures for them may be helpful.
Posts: 254 | From North Carolina | Registered: Nov 2013
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
No, I had ramped up to four tablets daily, total.
But the effect on my brain function was absolutely startling...I could THINK again.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
thank you all so much. I'm sorry I've been MIA. (long story) I have stopped the abx, and have started PT. I am going to investigate everything you all have said, I am in so much pain. The PT seems to help the next day, then the second day back into screaming pain in the arms. She did the scraping thing (grafton) that about killed me but I think it helped. I'm gonna go write all this down!
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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posted
I had a lot of muscle pain everywhere and for me it went way down when I found the right antibiotic for me, oral clindamycin.
I also stretched out a lot of tight painful muscles in the swimming pool before I ever found out I had Lyme. I took a pain killer and started stretching. In one month's time I could see this was starting to alleviate pain.
It took 9 months of doing this once a week, while held up by a torso flotation belt, to get the muscle pain down. I'm going to hazard a guess that I got the waste products out and the good stuff, like oxygen and nutrients, in.
Posts: 13116 | From San Francisco | Registered: May 2006
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