Pain Meds Concerns

First of all, I'm so very sorry that you are in such pain. I've tried many of the same medications, and they did very little or nothing for me.

This may or may not be something you are ready to consider, but acupuncture has been the only thing that keeps my pain levels down to where I can live with it.

Whatever options are offered here, I do hope that you can find something that will work soon.

shadow,

I am sorry that you are in such pain. Those of us who have never been sick with the illness cannot really understand what you are going through.

A lot of the pain can be eliminated with a really thorough detox program. Some people would dismiss this claim as being overly simplistic in thought. However, i feel that they don't really understand what a thorough detox program is, and what it looks like. If the pain is systemic in scope, such as is in what is called Fibromyalgia, then, a broad-based detox program is for you. Here is a copy of something that I had posted in another thread:

There are several reasons why the muscles can become so sore. As your detoxification pathways are compromised, toxins may build up in the body, thus creating an assault on the endocrine system as well as on the cellular level. Cortisol levels skyrocket and then eventually crash after adrenal burnout. The body's core temperature often lowers as a result of metabolic syndrome, and hormone levels are further out of balance. Lactic Acid builds up. Muscles break down and are consumed especially during skyrocketing adrenal activity.

There are several things that can be done to reduce body aches. Be sure to do everything that you can to detox. Make sure to address all of the various detoxification pathways, i.e G.I, liver, kidneys, lymphatic, skin, lungs, mind/spirit etc. Use as many different detox mechanisms as possible, i.e physical, bio-chemical, bio-energetic, thermal, mental, etc. as possible.

Stay warm. Make sure that your doctor understands endocrine gland function, and has the expertise to treat their dysfunction. Try to eliminate as much stress on your body, mind, and spirit as possible.

With time, it is possible to greatly reduce the body ache/pain symptoms if a well thought out approach is designed and implemented.

Here is a link to an article that Dr. Jernigan wrote on the subject:

http://www.hansacenter.com/pdfs/Fibromyalgia_and_Low_Body_Temperature01-10-2010.pdf

Don

Can your doctor switch up with Vicodin and then go back to Oxy, this way you don't have to worry as much about dependancy. That was what my doctor wanted to do with me, unfortunately I couldn't handle Percocet.

Shadow,
With these diseases being so very complex and deep seated in our bodies, it takes an Acupuncturist that has had years of training and years of experience. My Practitioner is in her mid 60's and has had extensive training to equal a Masters degree in Acupuncture.
She has been able to 'unlock' many of my body systems so that they could function once again between using acupuncture and the herbs she has me take.

Any Medical acupuncture or Chiropractic office doing acupuncture is highly unlikely to have had more than just a few weeks (if that) of the proper training. Insist on getting information on your Practitioners, knowing how much training and experience (& with what) will help to keep you from wasting time with those that just don't have the training and experience to be able to help with such a complex illness.

Trav- thank you for that info. The acupuncurist at the chiro center is very eastern and he even makes his own herbs but he is very young so does not have the experience yet. The other lady i went to was very good but again she was my age - early 40s- but I didn't have her treat this stuff. It was very early when I was starting to experience random pains here and there. So, I will research into that. Thanks for the info.

Donna- I am really focusing on my diet- juicing, NO sugar- I really hate that one but I know it helps, gluten free, etc...I need to look into the sauna and steam. The epsom salt baths really help but I always seem to forget to do it or not want to take the time to do it. All this stuff is so time consuming. I have 3 kids and and a life I want to get on with!! I am seeing my new pain dr. so I will talk to him about switching up due to tolerance. I think the herxing is making my pain just over the top!!

Heathersdad- can you elaborate a little on the detoxing for spleen, liver etc. do you mean herbal supplements or what...trying to keep stress down in a growing house of 3 kids, a dog, a husband and all that goes with that is like trying to contain water but I am working on counting my blessings and rolling with it all!! I am also seeing a therapist who deals a lot with pain and am going to start EMDR for pain control. I also get regular massages.

Thanks everyone for your thoughtful responses and above all care and nonjudgement- I think most of my family just thinks I am an addict but until they have walked a day in this body don't let them judge.

Shadow,
Learning what things to do 'battle' (at least that's what it feels like some days!) on and rolling with the flow has been what has lowered my stress levels the most! I'm amazed at all the little things that used to make me nuts!! LOL!

Especially when you have these infections long standing, it really does pay off to have the most experienced - yet the most open to changes- doc's and practitioners we can find!!

spall- that is such a beautiful way to put it and exactly spot on! The pain IS bone crushing and thus soul crushing as is the pill use but it seems to be what I have to balance at the moment and hope that this level of pain will go sometime soon as my lyme improves and at that point, I will be able to reduce. I have also thought of trying the suboxone (twin) route, especially as it is used for chronic pain and to help get off these other meds. Twin, do you find that the suboxone works for your level of pain? Also, I hear you on taking the meds or being disabled but my therapist tells me constantly- people have no idea what it is like to live with your level of pain, so don't even pay any attention to them. And so I don't- I mean noone is handing out any awards for martyring through the pain- you do what you have to do to get through and to function. It is not like that is the only thing I am doing to manage this illness. Anyway, twin, it seems you are near me too in the DC are, whereabouts are you?

samjones said...
Hey Donna,

Are you from CT?? I am assuming so by your name.. I am from CT too..

yes sam...i live in fairfield county...still digging out from this whopper storm! donna

i use kratom for my lyme pain. unfortunately there are many government agencies trying to label it as "incense" like that fake pot stuff so it is starting to get banned everywhere. It is already banned in indiana


i can give you the site of a good wholesaler with great quality/bulk pricing if you would like

Ugh sorry for all those typos! I was trying to say:

I would be interested in what strains and/or doses you recommend.

Thank you! :)

Hi All--

So grateful for this timely thread on pain management.  I am dealing with Lyme with my daughter (like Heather's dad!!).  We also went to Hansa, as some of you know--and it helped but we are still in the battle.  My daughter has gone from bedridden and housebound 2 years ago, to now holding down 2 part time jobs and trying desperately to try to rebuild her life.  Unfortunately, she still struggles greatly with the pain issue as well as insomnia.

She is begging for a pain management doctor.  We actually have worked with one to get her OFF of the valium and hydrocodone she was on because she was needing more and more.  She tried a Butrans patch which has not seemed to work very well.  Anyway, lately she has just been taking hydrocodone.  She is pretty non compliant as far as diet goes and is addicted to sugar.  No amount of nagging is changing any of this, so am trying to back off.  We have tried acupuncture (though maybe not as experienced as we should try to find. . .), NUCCA chiropractic, and so many other things.

I just feel that there is a piece of the puzzle we are missing.  Dr. J feels it is CCSVI. . .  Her local ND thinks it could be related to her neurotransmitters.  We just got those test results back, so will be trying some different supplements.  One is called Kavinace.  Anyone have any experience with this??

It is a challenge working with a teenager.  I feel like better nutrition would help, we also have a sauna that she does not use, and a PEMF (iMRS mat) that I feel may help.  She just cannot seem to do anything consistently and would prefer to take a medication.  Which I am against!  It's turned into a battle of the wills--which neither of us want! 

Anyway, thanks for allowing me to vent.  I love all of the suggestions and thoughts. . .

~~Joni

Well, Joni, I had a lengthy, well-written response to your post written, and left the page to get a link to share with you, and lost the entire post. That's what I get trying to do everything on my so-called "smart"'phone! ;)
Basically, I just wanted to say that I understand both sides of this, as a parent and as a Lyme patient.

I'm currently seeking pain management because my rheumatologist was furious when he found out I was being treated for Lyme. He was prescribing my medications for pain.

I was prescribed Valium briefly, and along with hydrocodone I was able to do more than I had in well over a year. I took my son for walks...to the park, the library, etc. I felt so much better mentally, and I think that's an important part of this healing process. The pain of Lyme is cruel and unrelenting. I know that it makes it even harder, knowing that I'd finally found medications that gave me some "freedom" from the pain, and now I no longer have it. I still take hydrocodone, but the Valium in combination was so helpful, not only with the muscle spams (the reason it was Rx'ed), but also with the nerve pain. It's harder now knowing that I found something that actually helped but can no longer take it.

The ER doctor Rx'ed the Valium and said that is it helped to have my rheum continue it, but he basically dropped me like a hot potato once I told him I was pursuing treatment for Lyme. But that's a whole other post...he was highly unprofessional in his reaction, and it's infuriating, to say the least.

I'm seeking a new doctor and hope to return to taking Valium, and continue the Hydrocodone.

However, as a parent, I truly understand your concern about your daughter taking these things. It terrifies, (and even embarrasses me), at times that I rely on these medications, but I feel it's what I need to do until my treatment "kicks in".

I may have posted this before, but I wanted to share an article that talks about the use of opiates in pain management. I know it helped me a lot when I was torn about taking the medication. I think it's a great read for anyone dealing with chronic pain:

http://health.howstuffworks.com/mental-health/addiction-v-dependence-on-pain-medications.htm


Also, I too have trouble with the diet, and I'm an adult, almost 33 years old. I should have way more self-control than I do! Sometimes the cravings for sugar are stronger than I care to admit :)

You and your daughter will be in my thoughts. Whatever you decide, I'm sending positive thoughts your way in the hopes that you can come to an agreement to help your daughter find some relief until she can heal.

I personally think pain management is a big part of the healing process. Less pain = less stress = less flares... in my case, anyway! :)

As for the Kratom I inquired about, I still haven't gotten the courage to try it. It's a bit controversial, and I have enough controversy in my life as it is. If it comes to that I will try it, as I have to function in order to take care of my busy little toddler