posted
I mean very severe all over body and head pain that has led you to be on very heavy duty pain meds. I myself have this problem and have recently had to up my meds twice in just a few months. So here are my questions.
1.Is there anyone who dealt with these severe symptoms for a long time, but did have a happy ending and were able to get off the meds?
2. Do you have just lyme, or did you have babesia or bart?
3. Have you found any outside explanations for why you are having this sort of pain? I mean aside from the Lyme, something that could be looked at or treated?
Posts: 34 | From NJ | Registered: Mar 2011
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METALLlC BLUE
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Member # 6628
posted
I've heard MSM may work well for some people.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
the narcotics don't work for me. ibuprofen does. high doses and fish oil. i need neurontin occasionally when tri geminal kicks in.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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momlyme
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posted
Up for my friend who is in a ton of pain...
not to mention my son who is in a ton of pain but rarely complains!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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sutherngrl
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posted
I had severe shoulder and arm pain, and moderate pain elsewhere. Was on Lyrica for quite a while.
My shoulder pain has completely gone away with lyme treatment. The only pain that remains for me is mild to moderate knee pain and heel pain.
Took about a year and a half of treatment for the shoulder pain to begin to lift.
I believe I have mainly been dealing with lyme and bart. Don't seem to have babesia symptoms.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lpkayak - Maybe the ibuprofen works for you in large doses because it helps with inflamation?
I myself have been am currently on morphine, vicodine and lyrica. This is for severe severe all over body and headpain, the kind of pain I didnt think ones own body could create.
The similar stories on here that I've seen have mostly ended with the pain continualy increasing and in the end no pain meds will do anything. I am hoping to not end up that way. So any advice on that would be helpful.
Posts: 34 | From NJ | Registered: Mar 2011
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littlebit27
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posted
I'll be following this. I'm on vicodin and fentanyl patches when the pain is unbearable- usually around my flagyl pulse.
It's horrible. I hate the fact that I haven't had a pain free day since Jan of 2010.
I take cat's claw for the inflammation- but since that is thought to also kill the bacteria...it could cause herxing. But it does help with my inflammation when nothing else did.
I was on neurontin for a bit- but that got too expensive and not so much worth it- so I weened off of it. But it did help in the beginning. I was on a lot...I think like 2400 mg a day.
I've tried every supplement known to man to help pain and they've all been worthless to me.
I'm hoping that eventually I will kick this Lyme and Bart (hopefully NOT babs too) and my pain with subside...until then I just keep up with my meds the best I can and deal with it. It sucks, for sure.
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
IrTabby2 - MSM is Methyl Sulfonyl Methane. I tried some from GNC and it was not helpful at all... that does not mean that a higher quality MSM would not help with pain.
I have been considering purchasing the powdered form of MSM here: http://www.bulkmsm.com
I would like to hear from anyone who has had success with reducing pain with MSM... and where you got yours.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Littlebit - I should try the cat's claw, I've heard that from a couple of other people, though I was trying other things for inflamation, like ginger and also akba plus.
Also Im thinking Bart might be what is responsible for this type of pain, though my doc has yet to treat me for any coinfections..
Momlyme - let us know if you do try the powdered for and like it.
My doc wants me to use an oxygen machine at night, he says that should help reduce pain. We've been trying to get that approved from the insurance for over a year now. Also has anyone had any success with things like accupunture?
Posts: 34 | From NJ | Registered: Mar 2011
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Razzle
Frequent Contributor (1K+ posts)
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posted
When I had the most severe pain, it was caused by an injury and my brain not wanting to shut off the pain messages after the injury healed (RSD/CRPS). It took 4 years to get the pain to go away. What helped then? Antihistamines, and a very customized physical therapy program. I am intolerant to any and all pharmaceutical pain medications (prescription and over-the-counter).
What works for my pain now?
Homeopathic Arnica - helps me with achy, bruised type pain.
Homeopathic Hypericum - helps me with sharp, shooting, or severe pain.
Homeopathic Causticum - helps me with the wandering leg pain.
Heating pad - helps most all pain I experience, except headaches.
Nettles - this herb actually works quite well for my joint pain, and also helps to prevent the wandering leg pains.
Orthotics plus a good walking shoe - has made a world of difference for my painful feet - doctor has diagnosed clinically with Bartonella, so I guess the Bart. and my poor nutrition status make my feet muscles weak, so that would explain why my feet feel so much better when they have the right kind of support (orthotics) and a good walking shoe helps stabilize the feet so they don't get into positions that are unnatural for walking/weight-bearing...
Vitamin B12 - helps some with nerve type pain/strange sensations, and also I just feel better in general when I get B12 shots!
Magnesium - helps tremendously with muscle tension/pain. I find I also need to get some Calcium for maximum benefit.
My Husband has found MSM to be very helpful for his joint pain (caused by long-term Prednisone use - the drug destroys connective tissue...but the MSM helps the body rebuild the connective tissue). I'm sensitive to sulfur (methylation cycle genomic variants cause me to have difficulty processing sulfur) or I'd be taking the MSM also...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
There is a prescription medication called Voltaren that may be helpful. It's a cream and may take the edge off for you.
I'm so sorry you're dealing with unbearable pain. My daughter is too and it's heartbreaking.
Posts: 677 | From Virginia | Registered: Sep 2002
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lymeinhell
Frequent Contributor (1K+ posts)
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posted
You need to have your Dr. figure out what type of pain it is - is it nerve pain? inflammation? referred pain (that shoots up over your head and down your neck, shoulders perhaps?) that is caused by muscle spazms?
Each of these types of pain do have things that will help, without resorting to the use of narcotics. But it takes a very patient and thorough investigation to figure it out.
I was able to resolve mine, but it took about a year, with 1. Zyflamend - an herbal anti-inflammatory made by New Chapter - truly helps with inflammation and the associated pain. You can get it at any Vitamin Shoppe. In the beginning, I took up to 8 a day.
2. Flexeril - muscle relaxant at bed time to help loosen up tight muscles
3. IV Magnesium to restore my magnesium levels so I didn't end up with muscle spazms (that feel like lumps under your skin, usually in the neck, head and shoulders areas)
4. Trigger point injections of lidocaine injected to the knots on the back of skull (which completely got rid of my head pain).
5. Get an inflatable mattress and stop sleeping on a spring mattress (springs cause pressure points and bedtime a nightmare). An aerobed or sleep number bed (which I got) or even a water bed may give some relief.
Write it down as pain crops up. Does it hurt when you lay down on a not so comfortable surface? Or only when you are in the same position for a while? Is it an all over ache?
Or feel like your bones hurt?
Or is it shocks and sparks?
Does the top of your skull feel like someone slammed a hammer into it?
Does your skull hurt when you walk or are jostled? Does it wrap around your skull or feel like your skull is too tight? Or is it the type of pain that feels like a sinus headache times 10?
This is the type of process you need to go through to figure it out.
I truly do hope you are able to figure out what type of pain it is so that you and your Dr. can figure out the puzzle of your pain. It will resolve over time with treatment, but there's no reason you need to suffer endlessly in the meantime.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Razzle, what type of injury was it? ARe you almost pain free now after four years or still experimenting the same level of nerve pain?
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
imagine2 - Im not sure if a cream would work, but I will look into it. thanks
lymeinhell - Well Im not sure exactly what is causing the pain, I believe a mixture of neuropothy and inflamation. My brain seems to send out pain signals constantly for no reason. -
It is an all over general pain, and it is constant (when not covered by my pain meds), hard to describe, it is in the head, stomach and all over body.
Its about a 200 on the pain scale of 1-10. Kind of like the head has a huge drill in it that is drilling all over, while Im being shot all over my body and set on fire...I know that sounds extreme, but its the only way I can describe it.
I am seeing a nuerologist also so hopefully he can figure something out. With the lidocane shots, how did that help, and what kind of head pain had you been experiencing?
Thanks everyone for all the info and suggestions!
Posts: 34 | From NJ | Registered: Mar 2011
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Razzle
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by Shahbah: Razzle, what type of injury was it? ARe you almost pain free now after four years or still experimenting the same level of nerve pain?
I sprained my foot twice within 1 week...after the second sprain, the pain never stopped and continued to get worse/more severe with time. And then the pain started to spread to other places, and at the worst, was in both feet and my right leg from ankle to mid-thigh, and also my right hip. It was trying to spread further up my left leg but I got into the physical therapy program and that stopped the progression and put me into remission.
The pain felt like an elephant was standing on my right foot - a very deep crushing sensation, plus sharp shooting jolts, a deep ache, and strong throbbing through the rest of the affected areas. It felt like about a 20 on a scale of 1-10 when at rest, and using my feet for walking, standing, even just touching the floor, increased the pain quite a bit above that. Took 2 years to get diagnosed with the RSD, and another year to find a doctor who could effectively treat it.
I have been in remission from the pain since 2001, though the crushing sensation tries to return if I don't do some kind of physical activity on a regular basis (even walking out to the mailbox helps to keep the crushing sensation away). I also still have not been able to recover all of the muscle lost to wasting in my right calf muscle, but I'm just thrilled to not be in such screaming pain anymore.
I do still have wandering leg pains, joint pains, headaches, etc., from Lyme/Bart., but am very thankful for not having the extreme nerve pain any more.
Thanks & take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Muscle relaxers along with anti inflamatory meds help also. I spit the pill in half. Makes me less sleepy. I only use on days i really need to. And yes, i do take vicodan 750 2 times a day and sometimes 3 times a day, but never more.
I don't know what I'm going to do either. I take inflamatory herbs also as mentioned above. they do help but not the whole answer.
I see a pain doc. he's trying to help me. Right now he has me reading a book called - Manageing pain before it manages you by Margarette A caudill. It may help somewhat.
Today is a really bad day for me. I've slept alot, taken extra herbs, kept myself calm. That's all i felt i can do. I find distraction helps somewhat, but when the pain gets that bad its even hard to distract.
Warmth helps - the sun, heating pad. Pet a cat. Watch a tv show. Massage helps. Even the cheap ones at the mall.
Getting on the right medicine really helps the most.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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posted
Imagine I was given Voltaren prescription cream also by my ortho for anti inflammatory pain.
You can use it anywhere the pain is up to three times a day. It was a bit expensive even with insurance but does help that severe pain ease up.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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I haven't had a pain free day in over 20 years. I have different kinds of pain:
>Neuropathy, mostly in my feet and legs (painful numbness, if that makes sense). I ALWAYS feel like I'm walking on rocks, when it's bad it feels like walking on broken glass.
>All over "hit by a bus" achyness that has better and worse cycles.
>And sharp sudden pains like someone is sticking me with an ice pick.
Over the past 20 years I have had numerous tests and MRIs. No brain or spinal problems were found (meaning no tumors or bad discs or pinched nerves). Have had xrays on feet and legs, nothing to explain the pain except Lyme & Co.
Lyme & co damage nerves. And damaged nerves send extreme signals with no cause.
Heavy duty pain meds really knock me out and I'm groggy even the next day. They only take a little of the edge off of the pain so most of the time, they are not worth the grogginess.
I just started using the Voltarin. It's ok if you have pain in one area. I've been having sharp pain in my right toes the past week and it helps a little with that.
The best help I've found is the supplements Alpha Lipoic Acid and B-12 (methyl form). And a gluten-free, sugar/starch free low carb diet with plenty of protein and fats. Fats and cholesterol are necessary to rebuild and repair nerve tissue.
For me sugar/starch = PAIN
Hope you find something that works for you.
-------------------- "To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld
Lyme neuro symptoms for 20+ years. Infected in Maryland. Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy) Posts: 261 | From Colorado | Registered: Oct 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Well it sounds like you have a combination of both inflammation and neuropathy going on. I'm no doctor and this is just IMHO... The all over general pain is most likely inflammation. Which can be addressed on many fronts.
As I mentioned earlier, Muscle relaxers, sleeping on an air bed, along with anti inflamatory meds and an anti-inflammatory diet will help with this (the candida diet) - no sugar, no carbs. Significantly helped.
A Neuro had put me on prescription Bextra at first, but it was pulled off the market along with Vioxx and I switched to big doses of Zyflamend. In NJ, it's very easy to find Zyflamend in most vitamin stores.
Your other type of pain (Kind of like the head has a huge drill in it that is drilling all over, while Im being shot all over my body and set on fire) does sound like Neuropathy - I sure hope you get a Neuro that actually listens so you can work to get the right meds for this.
Re: Trigger point injections They were used to break up the muscle spazms covering the back of my skull (that I didn't even know I had). I felt jabbing pains everywhere on my head, and in reality, it was these stupid spazms in the back sending out referred pain. The needle breaks up the spazm, the lidocaine numbs the area blissfully, and blood flow is restored to the muscle area.
Muscles go into spazm there because Lyme depletes our magnesium - magnesium is hugely important to our bodies and low levels cause many many of our symptoms, including muscle spazms, crazy blood pressure,insomnia, inflammation... the list is endless.
Here's a quote from low magnesium symptoms: Magnesium deficiency symptoms involving the peripheral nervous system include numbness, tingling, and other abnormal sensations, such as zips, zaps and vibratory sensations.
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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IrTabby- I'm sorry you're in so much pain. I know how horrible that is and what it can do to you.
I have had RSD since 1997, one of the worst symptoms of RSD is constant pain. 24 hours a day 7 days a week, the only thing that changes is the intensity. I also get an extreme hypersensitivity throughout my body from nerve pain to where I can't be touched from the neck down. Thankfully this is not a constant symptom and usually only happens about every 3-4 weeks or so.
Anyway, nothing has ever taken my pain away completely. However,things that have made my life more managable have been high dose morphin 3x a day, percoset for breakthrough pain, and Lidocaine patches on areas that are not RSD sensitive. I also take topamax daily for nerve pain and to help prevent daily headaches and migraines.
As far as your head pain goes, it depends on where it's coming from. I get head pain from migraines and from neck problems. I take treximet for my migraines as needed and at night I take zanaflex to help me with back and neck pain.
I've tried MSM but it didn't do anything for me.
I hope you can find some relief, I know chronic pain can really make it hard to function. Add Lyme on top of that and life becomes really hard to deal with.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Most who try MSM do not take enough of it to work. My DH takes 6000mg/day. I've seen recommendations of upwards of 10,000mg or more per day. So the rule of thumb is to slowly and gradually increase the dose of MSM until you notice something, unless you get to 10,000 and don't see any difference, before claiming it doesn't work.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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