Besides taking pain medications, as well as hot baths, what do you do to manage your pain?
I'm just not willing to take anymore pain medications, than what I already am, and there's just no way I can sit in a tub of hot water all the time.
Some days, I think, if I could just manage my pain better, then I'd feel better and in turn, be a lot more functional.
As always, your help is greatly appreciated!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Heating pads !!!
I like the kind you put in the microwave.(the moist heat ones - not the ones with rice or hard things in it)
someone started a meditation post this week - I haven't posted yet - I used meditation when I was bedridden 6 years ago - the only way I made it through the day
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
magnesium glycinate
Fish oil
oh, only warm baths for me.
A hot bath turns me to jell-o for days. I'd sure love to have a little pool to really stretch out and tread each day. How nice that would be !
massage when I can. I used to get weekly massages and that was so great. Since I've had to stop that, the pain has increased tremendously.
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[ 12. August 2008, 09:56 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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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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You've certainly offered me some very helpful suggestions.
I'll definitely try following through on most, if not all, of them, to see if they'll help me.
Most days, I stay wrapped up in a really good heated electric throw, which helps me quite a bit.
If you're interested in purchasing one, I got mine from JCPenney's website, which is the only way I think you can get one from them, for only $36 on sale, including shipping and handling.
I also use a tens unit, which helps me some too.
Thanks again!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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In the beg., I totally looked down on using pain meds. for my chronic pain. I read a book called "The Truth About Chronic Pain", and my perspective changed.
I now wear a Fentanyl pain patch, and it has hugely improved my quality of life! Don't suffer needlessly Jennie. There are effective pain meds. that can really improve the quality of your life. You do not have to tough it out.
Feel free to pm me with any questions.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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In the beg., I totally looked down on using pain meds. for my chronic pain. I read a book called "The Truth About Chronic Pain", and my perspective changed. Anneke
What does one do when one is diagnosed with fibro, get new symptoms 8 years later (arthritic and neurological) diagnosed AGAIN with fibro, and even though I brought my former bottles of meds that worked (including vicoprofen) he gave me generic Mobic, and Elavil.
He wouldn't give me Vicoprofen (nor muscle relaxants for my muscle spasms) even though it worked well in the past. (and history of bad accidents including getting pushed out of a car and landing on my coccyx bone, and flipped over in a car landing on the roof, having to crawl out the window.
I have such severe black pain/coccyx pain in addition to the "fibro." Had two bullseye rings years ago, but not tested until much later and negative on Western Blot.
posted
I took a medication call Namenda that really helped my pain for about 4-5 months. Then it stopped working, but it was a great few months.
It is a drug for Alzeimheimer's, but also used off label for fibromyalgia, which I thought I had for over 25 years.
I didn't have any side effects either.
Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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Honestly, I do not know, except to try to find a doctor, who will understand your needs and give you what you need.
I hope someone else will reply to you and offer you some better suggestions, if possible.
My heart definitely goes out to you!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Thank you very much for sharing your suggestion and experience with me!
I'm so sorry to hear it quit working for you!
I hope you've been able to find something else that works for you!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
I use Lidoderm patches. You need a script for them. I use them on my neck/shoulder/upper back pain. They don't stay on your neck very well. I think they work really good for a targeted area of pain.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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In the beginning, I felt the same way and I haven't even read the book you suggested, but I will, so thank you for mentioning it to me!
I'm glad the patch has improved your quality of life!
I agree, I shouldn't have to suffer needlessly, thus why I'm looking for some effective ways to control my pain and in turn, improve my quality of life, instead of just toughing it out.
I think anyone in pain should consider doing the same thing.
Thanks for the offer to send you a private message with any questions I have!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'll definitely try to get a prescription for them, just to see if they'll help me also!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
I suffer from myalagias and arthralgias from the lyme and coinfections, in addition to my other complications. We are finally getting my pain management program to be effective. I visit the chiropractor once a week for adjustments, the acupuncturist twice a month. I am on Darvocet N 100 for the pain, Zanaflex for the muscle relaxant and Lodine, a non steroidal anti inflammmatory for inflammation. This has improved the quality of my life greatly. I also use warm baths, not hot, as too hot causes herxs and weakness. Please use all modalities including medications, alternmative therapies, meditation!! Whatever works for you!! Good luck and hope you have effective relief soon!!!
Posts: 719 | From Delaware | Registered: Jan 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I am stunned that no one has spoken about detox.
The reason you have pain is the biotoxins, (bacterial die off), neurotoxins, excitotoxins(food additives),heavy metal toxins, etc that are not escaping your body.
IVs of glutathione are a great way to detox quickly and give pain relief as well. The more in pain you are, the greater and more obvious the relief.
A diet high in vegetables, especially cruciferous vegetables and fruits is very detoxifying. Meats, on the other hand, are toxifying and contribut to inflammation. Toxins contribute to inflammation and inflammation is the source of your pain. There is literature out there that organic meat does not have this same effect. That is because animals raised on grass without steriods and antibiotics produce Omege 3 in their meat which reduces inflammation whereas grainfed meat only produces Omega 6. Too much Omega 6 in our diet promotes inflammation.
Detoxify and your pain levels will decrease and eventually, as you eliminate the sources of your toxins, your pain will go away.
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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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
PS:
Keebler mentioned massage. That is a great suggestion. Massage detoxifies the body. It pops loose the knots of toxins in the body. Drinks lots of water to flush it on out.
Initially, I had to have a massage a week. Now I only get one once a month and that is because I do not need more than that. It keeps my neck and shoulders loose and free from pain.
My doctors have been steadily detoxing me for 2 yrs. I was so toxic initially, they could only do the most subtle forms of detox. If you detoxify too quickly, you can cause a lot of harm.
I tried a zeolite called Destroxin after much was posted about it here at lymenet. It blew my right knee up the size of a basketball. Needless to say, I was scared to death and my doctor was distraught. He actually did not get mad at me. He understands our desperation but he told me to always fax him any new product I want to try and he will look it up and give me a yea or a nay.
Don't try detox on your own. Use a good integrative doctor. If your LLMD is not trained in this area, use a 2nd doctor.
I bounce daily on a rebounder too which gets the lymph glands moving and keeps fluid buildup from happening.
It took months for me to do more than just sit on my rebounder. I was that inflammed in the beginning.
Today, I move about like any normal person. At my sickest, I was housebound. Unable to stand more than 5 mins, I had to sit to shower. Getting in and out of a hot tub of water was just a dream. I could not raise or lower my body with my swollen ankles, knees, elbows and wrists.
Get rid of toxins causing inflammation in your body. The inflammation can be invisable like in your brain or spinal column. If you have pain, you have inflammation. It can also be in your organs and be life threatening.
-------------------- 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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-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Thank you very much for giving me all of the information about detox and inflammation!
I agree, both of them have quite a bit to do with causing pain, thus you've given me a lot to think about, when it comes to them and pain.
I have the HLA-DR4 genotype, which doesn't allow my body to detox very well, so I'm sure having it doesn't help me with my inflammation, at all, especially when it comes to either or both of them contributing to my pain.
I already take Cholestyramine, since I have the genotype, which helps me a whole lot, as well as a few other detox and anti-inflammatory supplements, but they're just not enough to ease my pain, as much as I'd like for them to.
You've given me some really great suggestions, about how I can focus on detox and inflammation even further, which I'll do my best to follow through on soon.
Hopefully, as I use them, they'll help me to detox and reduce my inflammation even more and in turn, decrease my pain to a more tolerable level.
I'm happy to hear you've found relief with your pain, by following the suggestions you've given to me, so it will be interesting to see how much relief I can get from using them also.
Thanks again!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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quote:I am stunned that no one has spoken about detox.
The reason you have pain is the biotoxins, (bacterial die off), neurotoxins, excitotoxins(food additives),heavy metal toxins, etc that are not escaping your body.
IVs of glutathione are a great way to detox quickly and give pain relief as well. The more in pain you are, the greater and more obvious the relief.
I'm looking for pain relief too. I bought my lemons and olive oil, and some milk thistle and plan to use that at least to start with for detox.
My pain is probably due to the 35 years of mis-diagnosis and treatments. LOTS of steroid shots, muscle relaxors, physical therapy and so on.
I'm only on week one of abx and the only thing I've noticed so far is that some of my symptoms seem more intense. I'm not having any unusual or new symptoms.
Can people be Herxing without abx? or other treatment being used? Is the pain truly a herx or is it from all the damage that these little buggers have done?
The patches sound like a good idea and i sure agree with others here that constant pain is counter productive to the healing process.
The ideas posted here are wonderful.
proudmom Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Thanks for sharing your experiences, ideas, and plans with me!
It's so nice to be able to come here and interact with so many different people, such as you, about so many different issues.
I find that especially true, when it comes to what those of us with lyme and coinfections are experiencing.
I think you can herx, without taking any antibiotics, if your immune system is strong enough to kill any infections you have.
As well, if you're using other treatments, which affect any infections you have, especially if they're killing them, such as alternative things you're doing, like massages, saunas, etc., as well as alternative things you're taking, like herbs, supplements, etc.
I think the pain, which a lot of us with any infections have, comes from both herxing, while they're being treated and damage, which they've caused.
I agree with Luvs2ride inflammation and toxins have a lot to do with pain.
I believe the more of them you have affects how much pain you have, to a reasonable degree.
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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quote:Originally posted by MarlaSue: I took a medication call Namenda that really helped my pain for about 4-5 months. Then it stopped working, but it was a great few months.
It is a drug for Alzeimheimer's, but also used off label for fibromyalgia, which I thought I had for over 25 years.
I didn't have any side effects either.
Marla
It's weird that a med for Alzheimers is used for pain. I give it to patients at work for memory, and I know someone who takes it for their MS... hmm..... what is the correlation?????
Posts: 37 | From Connecticut | Registered: Jul 2008
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Can people be Herxing without abx? or other treatment being used? Is the pain truly a herx or is it from all the damage that these little buggers have done?
I was so bad tonight I was crying. While at work, I had a strange thing happen. I felt like I had to pick up my right leg when I walked. The inside of my right hip?/the top of my "femur" or the socket, I had severe pain. My whole body hurt as well. I am taking some herbs (cumanda) as well as colloidal silver. This socket thing will.... like other weird symptoms will go away. Very weird. I will have acute problems somewhere, and then it will disappear. Last weekend, it was my knee. I limp, and then a day later it will disappear. Sometimes I can't turn my neck enough when I am backing up in a car. Sometimes I can't lower my head long to read a book. It's so painful. What is that? It shifts around.
I also eat a lot of tuna, seldom eat bread, seldom eat meat, I eat a lot of fruits... Lychee 'nuts' sort of like a grape, sunflower seeds, watermelon, cherries, lemon in green tea. cucumber salad (made with vinegar, a little bit of sugar, (raw) minced garlic and shallots), yogurt. Oh... and by the way... are GAINING weight despite my healthy diet!
Posts: 37 | From Connecticut | Registered: Jul 2008
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Hopefully, MarlaSue or someone else here has an answer to it and will let us know!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I really can't answer your questions, as to why you have so many issues, which move around to different areas of your body.
I just want to let you know you're not alone though, since the same thing happens to me a lot.
For instance, for months now, out of nowhere, I've developed a problem with my left leg, from my knee all the way to my toes, staying swollen, but only ever since I started treating myself for Bartonella.
I do know it can be a symptom of Bartonella, especially after comparing what my leg looks like with someone else's, in Dr. Schaller's book about Bartonella and seeing mine's the same as their's, except somewhat worse.
Even with me taking a diuretic everyday and wearing compression stockings a lot now, it's only gotten a little bit better, thus it's still pretty bad, to where it hurts me to walk on it now, much of the time.
That's leading me to believe I'm not treating my Bartonella aggressively enough, so I plan to look into doing that soon, to see if that will help me with it.
Hopefully, you and I both can find something to remedy our situation, before too long!
I think your diet looks pretty good, so I'm guessing you might have a problem with your thyroid gland being underactive (aka hypothyroidism and/or Hashimoto's), else I don't know why you'd be gaining weight.
Have you had your thyroid hormone levels checked?
The best blood tests are T3, Free T3, T4, Free T4, and Reverse T3.
Have you had your thyroid checked for any autoimmune antibodies?
I forget exactly what they're called, for the test, but their level can indicate whether or not you have a thyroidal autoimmune condition, such as Hashimoto's, which can destroy your thyroid.
If you have an underactive thyroid, then it can't secrete the proper amount of thyroid hormones your body needs, which, most often, will make you gain weight.
If you have that, then you have to take thyroid replacement hormones to make up for the ones your thyroid can't secrete on its own.
When you do that, if you are gaining weight, as a result of having that, then I believe doing that would, most likely, keep you from gaining anymore weight.
It's not uncommon for someone, who has lyme disease, to have the thyroid problems I've mentioned.
Given that, I think it's definitely worth you having your doctor have a lab run those tests on you, which I mentioned, to see if your thyroid is okay or not.
I have an underactive thyroid, as well as Hashimoto's, plus my body is unable to convert T4 thyroid hormone into T3 thyroid hormone (T3 is what your body uses the most), which is considered a thyroid hormone conversion disorder.
It took me quite a long time to fully investigate my thyroid problems, then figure out exactly how much and what kind of thyroid hormones I needed to take, before I was able to manage to return my thyroid hormone levels back to normal.
A big part of that was because not all of the thyroid hormones I tried taking worked for me and I found out I have to take two different kinds of thyroid hormones, where one of them is only T3, because of my disorder and the other one of them is a natural one, which isn't prescribed as often.
Now that my thyroid hormone levels are normal again, I feel so much better!
I never even thought I had any problems with my thyroid either, until my doctor mentioned it to me as a possibility, tested my thyroid hormones, then explained my abnormal test results to me, but I was steadily gaining weight, despite the fact I was following a good diet, like you.
All I have to do now is repeat my thyroid hormone tests a few times per year or more often, if my doctor feels like I'm having some more problems with my thyroid.
If my thyroid hormone levels have gotten lower, then I just take some more thyroid hormones, a little bit at a time, until they reach normal levels again.
If my doctor and I hadn't figured out my thyroid was causing me so much trouble, then I'm sure I'd be feeling a whole lot worse than I already do, from having lyme and coinfections, for sure!
I can't even imagine what that would be like either, but I do still remember how very sick I was, before I got proper treatment for my thyroid abnormalities, and it was quite horrible, to say the least!
Mary Shomon wrote a great book, about the thyroid, which I suggest you read.
I highly recommend anyone, who has or suspects they have problems with their thyroid, to read it.
You'll find even more information about it on Amazon, including over 250 personal reviews, from people who've actually read it.
If you do decide to purchase the book to read, please make sure you buy it through LymeNet, by clicking on the Amazon picture, which is located on the lefthand side of most of LymeNet's pages and is linked to Amazon!
That way, your purchase of the book will help to support LymeNet, which so many of us with lyme disease really enjoy being a part of, such as myself.
They'll receive a certain amount of commission from Amazon, based upon your purchase amount, but only if your purchase originates from LymeNet's website, which I've already explained how to do.
I really hope all of the information I've given to you helps you!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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