Today was one of those days. I woke up with a blinding headache and my major joints hurting so much I'm on the verge of tears. I am relatively new to this level of pain and I wondered what you all do to manage it?
I have a few parameters that limit my choices.
1. I am allergic to codeine. 2. I can't taken any NSAIDS due to bad tummy reactions.
Input/Suggestions would be helpful. Thanks.
-------------------- Mal "Ready?"
Zoe "Always." Posts: 36 | From Pittsburgh | Registered: Oct 2007
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posted
you need to go to a pain mangement specialists. it is a whole seperate specialty, and if you go to a different kind of specialist (rheumatologist, primmary care, neurologist, etc) you are going to get suboptimmal care.
pain is very important to treat, because if you expend all your energy fighting the pain, you wont have the energy to heal and your immune system wil be taxed
there are many studies on this that show people whose pain is not managed well dont get well as fast
Posts: 615 | From maryland | Registered: Oct 2007
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posted
Keshvara, good question. I've wanted to pose this topic myself many times. I've been dealing with an uncomfortable pain level in me body for over ten years and still haven't figured out how to control it. I'm usually thinking I just have to live with it, but maybe I don't?
I currently take mobic or celebrex daily, perhaps it takes the edge off. I also take SAM-E daily. Not sure if it really helps with pain. I used to get weekly massages and sometimes a hot bath helps. I can't take any of the addictive pain meds, unless I want to get another addiction. There are times when I feel like trading in some pain for another addiction. I've done the physical therapy, chiropractic thing, didn't work for me. The good thing is that the pain level goes up and down, but some day's are very difficult for me and I lay down alot.
If anyone has any insight on pain control, it would be appreciated. I'm sure it's been discussed on here many times, but I am new here and not really sure hoe to navigate the site yet.
My previous LLMD seemed to indicate that that smoking weed or (pill form) may be helpful. I have tried it a few times and I think it does help with pain, but I'm a Mom and don't really want to be a stoner Mom!
Thank you, Jennifer
Posts: 69 | From fort collins, co | Registered: Dec 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I agree that a pain management specialist is very important. Physiatrists are the specialty I've seen and I like that they look at the body as a whole and usually combine medicine with other types of care, like physical therapy and accupuncture.
We are all different, but what works best for me is tizanidine (brand name zanaflex). It's an antispasmodic that really helps with muscle pain.
I used to take vicodin for break through pain (I really decreased the amount when starting the tizanidine) but I just switched that to oxycodone which is vicodin without the acetominophen because of a sensitivity to acetominophen.
I also worked with a psychologist who specializes in pain coping techniques. It was extremely helpful. He basically taught meditation and visualziation techniques that help reduce the amount of pain you feel. Mind over matter. It doesn't get rid of pain, but it helps.
posted
Since pain is such a primary symptom of Lyme, I'm befuddled with all the pain medication that I have tried that don't seem to work.(soma, doxepin, mobic, neurontin, topomax, etc....) I just recalled my previous Dr. prescribed Ditropan for pain. I think it's commonly used to control bladder leakage. I tried taking it and didn't notice a difference with pain level, but I only took it for a short time and am wondering if I should give it another try.
I've avoided the heavier narcotic/opiate type meds, cuz I would become addicted for sure. These are the ones that probably work, right? Sometimes, I dream of a morphine drip.....
Does anyone take Ditropan and does it help with your pain level? What other meds are helping you all with pain?
I usually don't focus this much on my pain level, but since it is such a primary symptom of Lyme, it seems we shouldn't have to suffer with constant pain in our bodies. I'm sick of it!
thanks, jen
Posts: 69 | From fort collins, co | Registered: Dec 2007
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posted
I used to take Percocet (Oxycodone, this does include tylenol) for my pain in the evenings. I would take ONE percocet per day which takes the edge off my shoulder/neck/back/hip pain, allowing me to sleep and have some enjoyable quiet time in the evenings. Now, I take Vicodin ES for reasons I will explain below, which doesn't work as well, since its an order of magnitude weaker than Oxycodone.
Opioids are pretty much what work for me. OTC NSAIDs do next to nothing, and I'm not willing to put up with the side effects from "Fibromyalgia" type drugs - Nurontin, Lyrica and the like. During the day I deal with my pain the best I can without taking anything, simply because I will not allow myself to get addicted to painkillers. Ultram (Tramadol), I hear some good things about, however.
I've been told to start smoking marijuana, but as I'm a young man in my 20's, the possibility to fail a drug test for a Top Secret security clearance has me hesitant. Strange isn't it, that I can dose myself with a Rush Limbaugh-amount of oxycontin if I so chose, and still pass, but if I smoke marijuana suddenly I'm a burnout of questionable moral character! But I digress...
(prepare for small rant)
Has anyone else encountered a LLMD who refuses to prescribe narcotic pain management? I became very frustrated to find out that my LLMD mentioned that his office "really didn't deal" in narcotic pain relief and that I was "too young" to be getting into such things. The office didn't seem to mind when I was taking my own percocet, left over from wisdom teeth extraction, but suddenly when it comes to prescribing, they start to take a negative view.
I'm no stranger to the medical profession, and pain management is a big thing these days, nomatter a doctor's specialty. It strikes me as odd that offices that claim to cater to "Integrative" health care, such as LLMDs, refuse to integrate this very important part of disease management.
Now I'm going to have to find a "stand alone" pain specialist, and plead my case to them, which is quite honestly stress I don't need. For the time being, I'm lucky that as a "favor" a GP doctor of mine prescribed some Vicodin, but he can only do it once as, I'm not truly under his "care", as he's not equipped to deal with lyme. Has this every happened to anyone else?
Posts: 691 | From East coast, USA | Registered: Jun 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
There is some info available on the web about "addiction" to pain meds. It's not as big of a problem as some people think it is. If people need pain meds to help with pain, you are not an addict. It's an issue of dependence. If you are in pain, you need to get rid of the pain to be able to function - it's not about getting high. Only a very small percentage of people who are actually in pain get addicted (like .02% or something). Most of the fears are due to the "war on drugs" from back in the '80's & are a remnant of an outdated, outmoded way of thinking.
Most reasonable doctors will prescribe pain meds. Many doctors are afraid of the gov't hassling them for handing out too many pain prescriptions, so they don't like to give them out. Any doctor who knows how much pain people with Lyme go through & doesn't want to prescribe something is not a doctor worth seeing.
I've tried many things (Soma, neurotin, tramadol, etc.) but oxycodone & vicodin seem to be the only ones that help me. I did try Cymbalta & it did help alittle but it made me a bit nauseous. I try to take the smallest dose possible & take more if I need it. I have a pill slicer & take a quarter or half a pill. If I suddenly stopped being in pain, I would stop taking it. These days, I have to take it every day since my pain issues are so severe. I have been taking it for many years & I don't feel addicted in the least. We all are different, though.
I wish I didn't have to be in pain but I've tried so many things to get rid of it. I've been in pain for 10 years... I hope one day I will be able to find a cure but it really does help to have pain meds available. If you told me I would be on pain meds 15 years ago, I would have thought "never". You don't really know what you would do until you are in the situation. Chronic pain is no joke...
Meditation CDs with binaural beats (like Hemi-sync) are helpful. I go to the sauna which has a hot & cold tub - this is good, too. Light exercise, doing something to get my mind off of the pain like cooking, watching TV or doing photography or art are also good - but (unfortunately) I still need the meds...
Massage (especially the deep kind) usually makes my pain worse - so I have stopped that. Foot massage or something light may be good but I've been kind of short on cash.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Ok, I'm going to get on my bully pulpit about this discussion on pain management!
I went for about 3 years in almost daily pain, before I broke down, got smart, and went to a smart and kind pain specialist. We explored some options - all of which did not help enough.
Then he recommended that I get on Fentanyl patches. Fentanyl is a strong drug in the opiod family. It causes PHYSICAL DEPENDENCE, WHICH IS HUGELY DIFFERENT THAN ADDICTION!!!
tHE BAD PRESS pain meds get in the press make the use of them for legitimate pain seem too dangerous, and just a bad idea.
On the contrary, paid meds in the opiod family, such as Fentanyl, which has the great benefit of a small, small patch placed on the back vs. pills. Opiod pain meds that administer a constant low dose of prophalactic med. ARE EXTREMELY SAFE, and have the least amount of negative effects of any of the other pain meds such as NSAIDS and Celebrex.
Lyrica, Topomax, and Neurontin did not work for me, but Fentanyl has been my life saver. I could not believe the level of pain relief I got from Fentanyl in the beg and now, and it's been 2 and a half years. And, I deeply regretted that I had not started it sooner.
Cymbalta has also been helpful. It made me nauseous in the beg., so my dr. gave me Reglan for the first couple of weeks to quell the nausea until my body got used to it. I also had to start at a very, very low dose, and build up from there. After a month, I could take it at full dose without any problems.
When taking opiods for pain, stopping the meds. when the disease has cleared has to be done carefully under the supervision of a dr. It is truly fairly easy, it just takes awhile of gradual reduction, along with a med called Catepres that's typically used for blood pressure.
Addiction involves a pattern of behaviors such as hoarding, using higher doses than prescribed by the dr., secretly pursuing more drugs by stealing or trickery. Before the administration of opiods, a psychological assessment is done to screen out those who have addictive issues in the past.
My dr. friend told me that when patients use opiod meds for legitimate pain, they don't get the same kind of high or rush that others who don't have pain get. This has been the case for me and several of my friends. I have NEVER felt a high, I just feel incredible relief.
There is a great book called "The Truth About Chronic Pain" that I recommend to get better educated about pain management.
IT IS SOOOO IMPORTANT to get out of pain!! It's debilitating, it can cause depression, can be caused BY depression, and studies have shown that it actually does DAMAGE to the BRAIN if not controlled.
Don't hesitate. Get to a good pain specialist as soon as you can. Get to someone who you trust, and who you feel trusts you.
If you do get on pain meds, email me, and I can give advice with specifics from my own experience.
Anneke
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
posted
Ok, I'm going to get on my bully pulpit about this discussion on pain management!
I went for about 3 years in almost daily pain, before I broke down, got smart, and went to a smart and kind pain specialist. We explored some options - all of which did not help enough.
Then he recommended that I get on Fentanyl patches. Fentanyl is a strong drug in the opiod family. It causes PHYSICAL DEPENDENCE, WHICH IS HUGELY DIFFERENT THAN ADDICTION!!!
tHE BAD PRESS pain meds get in the press make the use of them for legitimate pain seem too dangerous, and just a bad idea.
On the contrary, paid meds in the opiod family, such as Fentanyl, which has the great benefit of a small, small patch placed on the back vs. pills. Opiod pain meds that administer a constant low dose of prophalactic med. ARE EXTREMELY SAFE, and have the least amount of negative effects of any of the other pain meds such as NSAIDS and Celebrex.
Lyrica, Topomax, and Neurontin did not work for me, but Fentanyl has been my life saver. I could not believe the level of pain relief I got from Fentanyl in the beg and now, and it's been 2 and a half years. And, I deeply regretted that I had not started it sooner.
Cymbalta has also been helpful. It made me nauseous in the beg., so my dr. gave me Reglan for the first couple of weeks to quell the nausea until my body got used to it. I also had to start at a very, very low dose, and build up from there. After a month, I could take it at full dose without any problems.
When taking opiods for pain, stopping the meds. when the disease has cleared has to be done carefully under the supervision of a dr. It is truly fairly easy, it just takes awhile of gradual reduction, along with a med called Catepres that's typically used for blood pressure.
Addiction involves a pattern of behaviors such as hoarding, using higher doses than prescribed by the dr., secretly pursuing more drugs by stealing or trickery. Before the administration of opiods, a psychological assessment is done to screen out those who have addictive issues in the past.
My dr. friend told me that when patients use opiod meds for legitimate pain, they don't get the same kind of high or rush that others who don't have pain get. This has been the case for me and several of my friends. I have NEVER felt a high, I just feel incredible relief.
There is a great book called "The Truth About Chronic Pain" that I recommend to get better educated about pain management.
IT IS SOOOO IMPORTANT to get out of pain!! It's debilitating, it can cause depression, can be caused BY depression, and studies have shown that it actually does DAMAGE to the BRAIN if not controlled.
Don't hesitate. Get to a good pain specialist as soon as you can. Get to someone who you trust, and who you feel trusts you.
If you do get on pain meds, email me, and I can give advice with specifics from my own experience.
Anneke
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
posted
Ok, I'm going to get on my bully pulpit about this discussion on pain management!
I went for about 3 years in almost daily pain, before I broke down, got smart, and went to a smart and kind pain specialist. We explored some options - all of which did not help enough.
Then he recommended that I get on Fentanyl patches. Fentanyl is a strong drug in the opiod family. It causes PHYSICAL DEPENDENCE, WHICH IS HUGELY DIFFERENT THAN ADDICTION!!!
tHE BAD PRESS pain meds get in the press make the use of them for legitimate pain seem too dangerous, and just a bad idea.
On the contrary, paid meds in the opiod family, such as Fentanyl, which has the great benefit of a small, small patch placed on the back vs. pills. Opiod pain meds that administer a constant low dose of prophalactic med. ARE EXTREMELY SAFE, and have the least amount of negative effects of any of the other pain meds such as NSAIDS and Celebrex.
Lyrica, Topomax, and Neurontin did not work for me, but Fentanyl has been my life saver. I could not believe the level of pain relief I got from Fentanyl in the beg and now, and it's been 2 and a half years. And, I deeply regretted that I had not started it sooner.
Cymbalta has also been helpful. It made me nauseous in the beg., so my dr. gave me Reglan for the first couple of weeks to quell the nausea until my body got used to it. I also had to start at a very, very low dose, and build up from there. After a month, I could take it at full dose without any problems.
When taking opiods for pain, stopping the meds. when the disease has cleared has to be done carefully under the supervision of a dr. It is truly fairly easy, it just takes awhile of gradual reduction, along with a med called Catepres that's typically used for blood pressure.
Addiction involves a pattern of behaviors such as hoarding, using higher doses than prescribed by the dr., secretly pursuing more drugs by stealing or trickery. Before the administration of opiods, a psychological assessment is done to screen out those who have addictive issues in the past.
My dr. friend told me that when patients use opiod meds for legitimate pain, they don't get the same kind of high or rush that others who don't have pain get. This has been the case for me and several of my friends. I have NEVER felt a high, I just feel incredible relief.
There is a great book called "The Truth About Chronic Pain" that I recommend to get better educated about pain management.
IT IS SOOOO IMPORTANT to get out of pain!! It's debilitating, it can cause depression, can be caused BY depression, and studies have shown that it actually does DAMAGE to the BRAIN if not controlled.
Don't hesitate. Get to a good pain specialist as soon as you can. Get to someone who you trust, and who you feel trusts you.
If you do get on pain meds, email me, and I can give advice with specifics from my own experience.
Anneke
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
posted
Ok, I'm going to get on my bully pulpit about this discussion on pain management!
I went for about 3 years in almost daily pain, before I broke down, got smart, and went to a smart and kind pain specialist. We explored some options - all of which did not help enough.
Then he recommended that I get on Fentanyl patches. Fentanyl is a strong drug in the opiod family. It causes PHYSICAL DEPENDENCE, WHICH IS HUGELY DIFFERENT THAN ADDICTION!!!
tHE BAD PRESS pain meds get in the press make the use of them for legitimate pain seem too dangerous, and just a bad idea.
On the contrary, paid meds in the opiod family, such as Fentanyl, which has the great benefit of a small, small patch placed on the back vs. pills. Opiod pain meds that administer a constant low dose of prophalactic med. ARE EXTREMELY SAFE, and have the least amount of negative effects of any of the other pain meds such as NSAIDS and Celebrex.
Lyrica, Topomax, and Neurontin did not work for me, but Fentanyl has been my life saver. I could not believe the level of pain relief I got from Fentanyl in the beg and now, and it's been 2 and a half years. And, I deeply regretted that I had not started it sooner.
Cymbalta has also been helpful. It made me nauseous in the beg., so my dr. gave me Reglan for the first couple of weeks to quell the nausea until my body got used to it. I also had to start at a very, very low dose, and build up from there. After a month, I could take it at full dose without any problems.
When taking opiods for pain, stopping the meds. when the disease has cleared has to be done carefully under the supervision of a dr. It is truly fairly easy, it just takes awhile of gradual reduction, along with a med called Catepres that's typically used for blood pressure.
Addiction involves a pattern of behaviors such as hoarding, using higher doses than prescribed by the dr., secretly pursuing more drugs by stealing or trickery. Before the administration of opiods, a psychological assessment is done to screen out those who have addictive issues in the past.
My dr. friend told me that when patients use opiod meds for legitimate pain, they don't get the same kind of high or rush that others who don't have pain get. This has been the case for me and several of my friends. I have NEVER felt a high, I just feel incredible relief.
There is a great book called "The Truth About Chronic Pain" that I recommend to get better educated about pain management.
IT IS SOOOO IMPORTANT to get out of pain!! It's debilitating, it can cause depression, can be caused BY depression, and studies have shown that it actually does DAMAGE to the BRAIN if not controlled.
Don't hesitate. Get to a good pain specialist as soon as you can. Get to someone who you trust, and who you feel trusts you.
If you do get on pain meds, email me, and I can give advice with specifics from my own experience.
Anneke
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
posted
Ok, I'm going to get on my bully pulpit about this discussion on pain management!
I went for about 3 years in almost daily pain, before I broke down, got smart, and went to a smart and kind pain specialist. We explored some options - all of which did not help enough.
Then he recommended that I get on Fentanyl patches. Fentanyl is a strong drug in the opiod family. It causes PHYSICAL DEPENDENCE, WHICH IS HUGELY DIFFERENT THAN ADDICTION!!!
tHE BAD PRESS pain meds get in the press make the use of them for legitimate pain seem too dangerous, and just a bad idea.
On the contrary, paid meds in the opiod family, such as Fentanyl, which has the great benefit of a small, small patch placed on the back vs. pills. Opiod pain meds that administer a constant low dose of prophalactic med. ARE EXTREMELY SAFE, and have the least amount of negative effects of any of the other pain meds such as NSAIDS and Celebrex.
Lyrica, Topomax, and Neurontin did not work for me, but Fentanyl has been my life saver. I could not believe the level of pain relief I got from Fentanyl in the beg and now, and it's been 2 and a half years. And, I deeply regretted that I had not started it sooner.
Cymbalta has also been helpful. It made me nauseous in the beg., so my dr. gave me Reglan for the first couple of weeks to quell the nausea until my body got used to it. I also had to start at a very, very low dose, and build up from there. After a month, I could take it at full dose without any problems.
When taking opiods for pain, stopping the meds. when the disease has cleared has to be done carefully under the supervision of a dr. It is truly fairly easy, it just takes awhile of gradual reduction, along with a med called Catepres that's typically used for blood pressure.
Addiction involves a pattern of behaviors such as hoarding, using higher doses than prescribed by the dr., secretly pursuing more drugs by stealing or trickery. Before the administration of opiods, a psychological assessment is done to screen out those who have addictive issues in the past.
My dr. friend told me that when patients use opiod meds for legitimate pain, they don't get the same kind of high or rush that others who don't have pain get. This has been the case for me and several of my friends. I have NEVER felt a high, I just feel incredible relief.
There is a great book called "The Truth About Chronic Pain" that I recommend to get better educated about pain management.
IT IS SOOOO IMPORTANT to get out of pain!! It's debilitating, it can cause depression, can be caused BY depression, and studies have shown that it actually does DAMAGE to the BRAIN if not controlled.
Don't hesitate. Get to a good pain specialist as soon as you can. Get to someone who you trust, and who you feel trusts you.
If you do get on pain meds, email me, and I can give advice with specifics from my own experience.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I am going to get on my soap box here about the pain management issue. Lyme and Co can and will steal your life if you don't do something to be able to function in life.
If it takes going to a pain clinic then go. Take what you need to take that doesn't damage your liver, like the pain meds high in tylenol do. Norco, percoset and vicodin are hard on your liver.
My daughter has been though all the different types of pain meds that are typically prescribed by GP's and LLMD's. None of them worked. She is on Cymbalta, Lyrica and Soma for breakthrough pain and the depression caused from being so young and not having a life.
She went through several different types of pain meds that are considered "Highly addictive". Most of them, including morphine and Fentanyl patches made her sick. She takes a long acting med now and one for breakthrough pain. Prescribed by an MD at a Pain Center.
She takes what she needs to take to get her thought the day, and I would too. I think that people need to do what it takes to get through the hell of Lyme and co.
You can deal with weaning off the drugs when the time comes. Most people do NOT become addicted to their pain meds if they take them for pain, not to get high and they take them as directed.
Lyme is a horrible life stealing disease, I don't think that people should have to suffer with the chronic pain along with everything else they have to deal with. It just gets to be too much to live with.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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posted
I am going to get on my soap box here about the pain management issue. Lyme and Co can and will steal your life if you don't do something to be able to function in life.
If it takes going to a pain clinic then go. Take what you need to take that doesn't damage your liver, like the pain meds high in tylenol do. Norco, percoset and vicodin are hard on your liver.
My daughter has been though all the different types of pain meds that are typically prescribed by GP's and LLMD's. None of them worked. She is on Cymbalta, Lyrica and Soma for breakthrough pain and the depression caused from being so young and not having a life.
She went through several different types of pain meds that are considered "Highly addictive". Most of them, including morphine and Fentanyl patches made her sick. She takes a long acting med now and one for breakthrough pain. Prescribed by an MD at a Pain Center.
She takes what she needs to take to get her thought the day, and I would too. I think that people need to do what it takes to get through the hell of Lyme and co.
You can deal with weaning off the drugs when the time comes. Most people do NOT become addicted to their pain meds if they take them for pain, not to get high and they take them as directed.
Lyme is a horrible life stealing disease, I don't think that people should have to suffer with the chronic pain along with everything else they have to deal with. It just gets to be too much to live with.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
tmmort - It sounds like you have had past addiction, so I understand your inability to take narcotics. I've been told Ultracet works like a narcotic but is not addictive. You might want to ask a pain specialist about that.
Blackstone - My LLMD does prescribe my narcotics, but I first got a prescription from a pain management specialist and I work with a pain management specialist. I recommend a pain specialist to any Lyme patient with chronic pain.
There are a few reasons why LLMDs don't prescribe narcotics. There is the DEA fear and, since they are already at risk with medical boards, I don't blame them for being nervous about narcotics.
Some LLMDs won't prescribe narcotics because they say they weaken the immune system.
Other LLMDs just feel pain management isn't their specialty and they don't feel competent. I actually agree with this. There are doctors who specialize in pain and a good pain management doctor will know what pain treatment is best for different types of pain.
While I take a narcotic when necessary, my pain doctor was the one who prescribed zanaflex which is what gives me my quality of life. He also worked with the psychologist whose pain coping techniques were incredible (I'd never stop meds because of them, but they can help me cope when I'm waiting for meds to kick in).
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Have you tried changing your diet?
Diet makes or breaks my pain. Certain foods cause inflammation in our bodies. If you have food sensitivities (you can develop sensitivities at any time and always to the foods you eat most) then everytime you eat one of those foods, your body will incur pain.
I learned about the diet connection early on. If you haven't explored this, try eating just fresh fruits and veggies for 2 weeks and see how your pain level goes.
During this time, no animal products of any kind. Not butter, eggs or any food that has those ingredients in it and of course, no sugar.
Plain rice is ok on this diet. Just 2 weeks will tell you if food is an issue for you. If you get better on this elimination diet, then find a doctor trained in nutrition, leaky gut, etc and get help identifying which foods you have to avoid.
www.acam.org is a good place to find physicians trained in this area.
I have "explosive" rheumatoid arthritis (to use my doctor's words) and yet I have practically no pain just by diet and detoxing herbs (compounded). Cruciferous vegetables actually detox the body.
The main problem I have is an inability to detox properly. This has been identified by a specific gene test that shows several key-to-detoxing genes either missing or flawed. I have to compensate with special concoctions to keep my body detoxing properly.
Major migraines used to occur whenever I was exposed to molds. (that includes moldy foods like cheese, mushrooms, breads) Pizza is my biggest enemy.
I haven't had a migraine now in two years and practically haven't even had a regular headache. Allergies, food and other, could be contributing to your pain.
I think most of us on this board have a poor detox system. That would explain why some people get well and some do not.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
blackstone, why would you ask your LLMD to prescrivbe pain meds? unless he is also double trained in pain management, he is not going to be able to help you. I would not even trust a rheumatologist or an orhtopedist either.
no kind of doctor should be treating chronic pain other than a PAIN MANAGEMENT SPECIALIST. usually they are physiatrist.
if you have a surgeon or dentist giving you a few days of post-operative narcotics, thats different but for long term chronic pain, if you try to get it from a dr who is not trained in pain management you are treading dangerous territory.
the pain specialists know how to control your pain without getting addicted. usually it involves a long acting med like fentanyl, oxycontin, ms contin (long acting morphine) combined with another short acting narcotic for break through pain.
as for just trying to deal with it or stay in pain or try some bogus things like acupuncture or hypnosis or physical therapy, they do not work for chronic pain and the longer you stay in pain the more you are damaging your nervous system
chronic pain is a disease of the nervous system. when you are in pain, nerves get activated, and the longer those nerves are fired without any relief, the more damaged they become and they could just stay like that forever.
it sometimes is caused by a post-op situation or injury where a person did not take the few days of narcotics prescribed or were not given enough and had to tough it out. even if it heals, the nerves dont heal and keep firing.
so if all your energy is going to fight the pain, you have no energy left to heal. it could weaken your immune system and you will just get sicker and sicker
dependence is not addiction. dependence is much better than permanent nervous system damage
Posts: 615 | From maryland | Registered: Oct 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Interesting point about nerve damage roro.
Does long term pain actually damage the nerves?
How can you tell the difference between the nerve damage produced by neurotoxins by the spirochete vs. the damage done by chronic pain?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
i am using the term "damage" but I do not know if its actual physical damage like you get from a disease process such as an infection
its a problem with faulty firing. kinda like a short in a wire? i had to take pain classes for 6 weeks as part of my pain management clinic where I learned about all this.
i think in some cases there is on-going disease adding to the damage causing the pain, as in my case with lyme, and it makes it more complicated.
some people actually have chronic pain without any further damage and only have the faulty nerve firing, i think its called RMS (reflex pain syndrome)
here is an excerpt:
What is Chronic Pain? While acute pain is a normal sensation triggered in the nervous system to alert you to possible injury and the need to take care of yourself, chronic pain is different. Chronic pain persists. Pain signals keep firing in the nervous system for weeks, months, even years. There may have been an initial mishap -- sprained back, serious infection, or there may be an ongoing cause of pain -- arthritis, cancer, ear infection, but some people suffer chronic pain in the absence of any past injury or evidence of body damage. Many chronic pain conditions affect older adults. Common chronic pain complaints include headache, low back pain, cancer pain, arthritis pain, neurogenic pain (pain resulting from damage to the peripheral nerves or to the central nervous system itself), psychogenic pain (pain not due to past disease or injury or any visible sign of damage inside or outside the nervous system).
Complex regional pain syndrome (CRPS) is a chronic pain condition. The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. CRPS most often affects one of the arms, legs, hands, or feet. Often the pain spreads to include the entire arm or leg. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling. Doctors aren't sure what causes CRPS. In some cases the sympathetic nervous system plays an important role in sustaining the pain. Another theory is that CRPS is caused by a triggering of the immune response, which leads to the characteristic inflammatory symptoms of redness, warmth, and swelling in the affected area.
I think in our case with lyme, we are in pain because of continuous damage from the infectious process. but the nerve firing problem can also contribute. before I was dx w/ lyme they thought i had the pain syndrome
Posts: 615 | From maryland | Registered: Oct 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Chronic pain changes how the body perceives pain. So chronic untreated pain can actually result in more pain in the long run.
Roro, I disagree that acupuncture is bogus. I work with a great pain management specialist and he has had great success with patients using acupuncture in conjunction with medication and other pain treatment modalities. Not acupuncture to get rid of pain alone, but to use along with other treatments.
Acupuncture didn't work for me, it caused my muscles to spasm. But I really believe this doctor because of the success we've had with other treatment modalities he has had me try.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I am sorry, I did not mean to imply that acupuncture is bogus. I know it works for a lot of people. but like physical therapy and other such treatments it takes time to work
I do not think people should be left without pain medicines and suffer in pain and possibly get nerve damage waiting for the acupuncture to kick in
Posts: 615 | From maryland | Registered: Oct 2007
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sparkle7
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posted
I have always tried to use the most "natural" remedies & go to the root cause of the problem. I am trying to do this with Lyme but it's really hard. I didn't have much success with accupuncture or most physical therapies. I've tried. They are good temporarily but they don't give much long term help - especially, if you've had Lyme for many years with no treatment.
I do take oxycontin & vicodin. Opiates have been around for centuries. My doctor suggested Cymbalta - which I tried for 2 weeks at a very low dose. It did seem to help some but I am concerned at what the long term effects are. I don't think there are alot of studies about this. I've also heard it's hard to stop since you go into a kind of withdrawal.
I do want to get to the cause of the pain but I'm not real sure it's possible with long term Lyme. Can we ever do enough detoxing & killing of the spirochetes to ever get completely better?
I've decided to not take abx & just use the herbal protocols. Some supplements/herbs are quite strong & cause herxes just as severe as with abx. I'm not sure this really means we are getting better.
So, I guess we have to do both - try to kiil the spirochetes & detox & take pain meds to try to have some quality of life.
Does it ever end??? I'd like to go to a bunch of specialists but I don't have insurance. Even if I did, it may not even cover it since I don't have an "actual" positive western blot...
I guess we all have to keep killing the spirochetes & detox, get some pain management, get some physical therapy & try to have a life in between all that. It's hard even to know why we are in pain... Is it the muscles, in between the cells, not enough cellular energy, vitamin/mineral deficiencies, nerve pain, hormone related, toxins???
I think most of us just want it to stop by any means necessary.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
My LLMD won't work with pain management, but referred me to a pain specialist.
It made a huge difference to me. When I'm pain free, not only do I sleep better, I've been taking lovely naps during the day too. They feel very healing.
A lot of symptoms that I thought were part of the illness, actually were in response to the constant pain: lack of motivation, unsocial lifestyle, inactivity, irritability.
Actually, with pain relief, about the only symptom I have left is low energy.
I highly recommend going to a pain specialist.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
anyone know of pain management center in maryland?? I have really crappy insurance- cigna starbridge. i am in constant pain and can only do herbal protocols because i do not have the funds for a LLMD. i just got regular bloodwork done and my lyme antibodies are high and WBCs low.
i have to work 40+ hrs a week to keep this insurance and its killing me..im getting sick
im 23. anyone have any advice?
-------------------- If Your Going Through Hell, Keep Going... Posts: 99 | From Shepherdstown, WV | Registered: Sep 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Hope - I sent you a PM with a pain management doctor in Washington, DC if you can make it here.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I woke up with a blinding headache and my major joints hurting so much I'm on the verge of tears. I am relatively new to this level of pain and I wondered what you all do to manage it?
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