posted
21 years in, had a nasty flare up a few years ago. I've been taking abx for 3 years now, just started with pain pills two years ago.
Showing serious improvement, but still need pain pills.
Any words of advice?
Without the pain pills every day's pain just builds on top of the day before. What ever normal process to deal with pain, adrenals, endorphins, just doesn't do anything most of the time.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oldman,
Is it possible for you to address the source of some of the pain, such as the inflammation, herxing and toxins to help reduce the pain levels?
Glutathione, epsom salt baths, Alka-Seltzer Gold, ibuprofen, and a combo of inflammation reducing supplements have helped some people with pain issues.
I am so sorry you are hurting. I hope the pain cycle is broken soon for you.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Magnesium helps a lot, also coffee enemas help a lot (don't knock them until you've tried them!). There are lots of other supplements that help: enzymes, etc. Glutathione can be sublingual, in suppositories, or nebulized.
There are topical pain meds, including Lidoderm patches (helps me a lot). They're rx.
And anti-inflammatories, both herbal and rx.
If all of that isn't sufficient, it sounds like you need a pain management doc. But the above is enough to keep you busy for a while. That said, for some the pain level is such that pain meds are a necessity.
There are also meds like gabapentin (neurontin) and baclofen, which can help a tremendous amount, too. You will likely need a combo of a number of these.
Posts: 3771 | From around | Registered: Mar 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Parasites/worms can cause a tremendous amount of pain. I was on morphine and in a lot of pain until I treated for parasites. Google parasite symptoms and check out Humaworm symptom list.
If you have not looked at this angle and much overlooked co-infection of Lyme disease, it would be a good idea to do so.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Try low fat. I just did and my pain completely went away. When I start eating fat, it comes back (protomyxzoa rheumatica). That's one of the reasons I'm pretty sure I have it. Of course, gluten free, sugar free will help too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Sorry to hear this old man. Treating lyme, herxing, and being sick and tapering pain meds is a crappy combo.
Just coming off pain meds too quickly can be horrible not to mention lyme thrown in the mix.
I hope your doc is being gentle and allowing a slow taper. I hope you find a solution.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Maybe you could find a pain management place? If they were helping & not causing serious duress - I don't know why he wuld just cut them off.
I think alot of doctors are under pressure by the authorities to stop prescribing pain meds. It's probably a decision based on being called on the carpet rather than your health or improvement. Many doctors do not have pain management training.
Try to find a pain clinic. Opiate pain meds have been proven to help people who need them with few side effects. Not treating chronic pain seems to be much worse that taking the drugs.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Herx is part of it, most afternoons around the same time, 4 to 5 days a week, generally tolerable.
I have nerve problems in my arms, unsure whether it is primarily caused by activities (computer guy) or Lyme. Always gets worse when I herx, but most things do.
I was on lortab, helped plenty, if I took one before I started hurting I never got bad, but then I was taking them and not hurting, didn't have enough to make it from appointment to appointment.
Doc gave me percocet 7.5, 40 pills with one refill to last 90 days. Generally that is enough to make it with a few left over, but the pharmacy says that we can't do refills on percocet. Called the doc and he says he's a bit nervous as I've been on pain pills for nearly two years.
The worst of it is my arm, radial nerve is irritated for some reason, shooting pains through my arm, feels like my muscles are being pulled through my hand, kind of hard to describe. When I can't sleep because it never lets up, I can't work, when I don't sleep I hurt worse...
I've found a few stretches that help, but the stretches irritate tennis and golfers elbow, but make the radial nerve problem better. Anything that improves one of the three makes one or both of the others much worse.
Aside from sitting on my thumbs until it quits hurting, I'm kind of at a loss.
Working out helps to a point, but I don't know what point to stop at until the next day, and in general Lyme form the damned target keeps moving.
edit: cut out sugar, low on carbs and eating fairly healthy, got better after I started back on sugar.
Might feel better if I cut it out again, I'll try it.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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posted
I just feel bad when people are in so much pain.
I would for sure go to a pain management specialist.
My sister has/had Lyme- she has serious arthritis, nerve damage and pain from her Lyme her spine is in constant pain.
I just want to tell you she was in so much pain taking so many pain pills, then a ton of stomach issues and taking even MORE pain pills
That she ended up getting HALF her stomach cut out and some intestines from the pain pills creating two LARGE ulcers that would never heal with acid meds
She is now forced to deal with the pain because her stomach cannot handle any pain meds ever again.
I am not saying anyone is that bad yet, I didnt think she was either, and I do not think she thought the pain she was having in her stomach would lead to half taken out
-------------------- Good friends are like stars... You don't always see them, but you know they are always there!!! Posts: 362 | From west chester, pa | Registered: Apr 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Do you think it could be carpal tunnel related? I got carpal shortly after we moved next to a park (tick bite). My arm felt like it was being electrocuted inside. I ended up getting surgery for it(helped).
I think when we herx (don't really know for sure, just speculating here) that we may have more inflammation due to the toxin release. So that alone, and if you had carpal too (computer work), could aggravate it.
Does one arm have it more than the other (the one you use the mouse with)?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by 0ldman: The worst of it is my arm, radial nerve is irritated for some reason, shooting pains through my arm...
You may be able to reduce the inflammation and pain in the nerves using several things.
Systemic enzymes Fish oil Magnesium SOTA Magnetic Pulser
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I already take naproxen and magnesium along with a dozen other supplements.
I can't tell that it is helping until I miss a dose, then it is pretty obvious how much better off I was.
I've had carpal tunnel before, exercising can clear that up for me. This is different, but similar.
The best comparison I have is kidney stones. No matter how you move, be still, double up, stretch out, drink water, don't drink, nothing helps.
The only relief is from lortab, percocet or a stiff drink, and I can't drink anything harder than sweet tea now. If I stop using my arms and sit for a few days they get better, but 10 minutes of activity will completely undo the progress of two days rest.
Actual work (yard, car, etc) seems to help unless I happen to pull my arm funny, then it feels like I've been sliced open. It is primarily when I lift something with my palm down.
It is like walking on eggshells. I guess mostly I just needed to vent to folks that have been there.
I've tried several different natural anti inflammatories that have helped, but constant heartburn keeping me up at night isn't much better than my arm keeping me up.
Reminds me of the song "The Tax Man", when you walk we'll tax your feet, when you sit we'll tax your seat, when you're cold we'll tax your heat...
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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or Flex Now... (vitacost) .. I haven't tried it yet but it looks promising.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You need to see a DO, physiatrist, or neurologist---or orthopedist---to see what the cause is of this pain. You may even need to see more than one doc to find out. This way, if it is something that can be fixed by manipulation, Physical Therapy, or surgery, etc., you can take care of it.
It sounds like your computer use, etc. is the issue.
Next to that, see a PAIN MANAGEMENT doc! But don't skip the first step!!
Posts: 3771 | From around | Registered: Mar 2008
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posted
I am a pain person too and what really makes a huge difference for me is msm. It is inexpensive, vitacost has the best price on it, I think. I take 5 grams am and pm. Boy do I know when I forget to take it.
I still have some pain meds, but prefer to do something all natural as the narcotics lower the immune system and we all need to beef that up!!!
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I am a big fan of acupuncture. It helps me in so many ways...one of which is the pain department! Maybe you could give that a try.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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