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In a Really Bad Place with Pain

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Posted 9/8/2016 2:12 AM (GMT 0)
I am in a really bad place with my pain management. Sorry- this is long!

When I first was diagnosed (most likely misdiagnosed) with fibromyalgia, and it got really bad, I was prescribed Tramadol to take as needed. That was about a year and half ago. Eventually over time (especially since I didn't even know to treat lyme) my pain just worsened to the point I needed a Tramadol every day. My primary care doctor didn't like I was taking it daily and wouldn't prescribe it anymore. (That was about this past February.) She also doesn't believe i have lyme despite a positive Igenex test because she had never heard of Igenex and my Quest lab came back with only two positive bands. Anyway, the reason I bring that up is it is really hard to have a doctor that has always just thought I needed to exercise more and give me antidepressants to get rid of my pain. So, I've never been really happy with her.

So, after her not able to help me with pain medicine, I'm feel embarrassed to say I would go to urgent care to get help. I'd usually get 30 pills that would get me through a month or so. But you can only do that so long.

I have officially run out of pain medication as of last Wednesday. I am not able to leave the house anymore and spend most of the day in bed. I'm not handling it mentally well at all. It always helped to at least know I could take a pill in the afternoon and be able to pick my kids up from school or go to their soccer games or at least be able to leave my house not in pain.

I just don't know what to do now. I've tried finding new doctors over the last 6 months since I had been so unhappy with my current primary care doc, but I know it looks like I'm doctor shopping for pain meds so it's absolutely humiliating. No one takes my pain seriously. I have been trying everything I can think of over the last year, and especially this last week, cannabais, CBD oil, magnesium, Kratom, etc. My pain is just so severe I need help.

I'm so tired of doctors feeling like I'm exaggerating pain (I've been told many times pain is not a symptom of lyme) and feeling like a drug addict just trying to get help to get out of bed.

I'm not sure what else to do. I'm super close to just trying to order it illegally online because I'm so desperate for pain relief. I don't understand why no one can help. My goal is to of course not need it after I get my lyme under control, but in the meantime, I have absolutely no quality of life at all.
Posted 9/8/2016 2:25 AM (GMT 0)
Listening and caring and imagining the support you need manifesting.
Posted 9/8/2016 2:30 AM (GMT 0)
Pain killers (controlled substances) won't be available online, don't go there. Abx yes.

Try finding a LLMD in your area? sounds like it's time for a new doctor.

is this joint pain? take gellatin for collagen support, and turmeric/curcumin?

Have you done any antibiotic? doxy at all? how long?

I understand pain is driving you to pain meds, but I'd say your priority should be getting to a LLMD and getting on abx ASAP.
Posted 9/8/2016 2:38 AM (GMT 0)
Thanks, Caramba. I have been through two LLNDs in my area, but they've referred me out because they haven't been able to help me. I'm currently seeing an LLMD about 2 1/2 hours away (just had my first appt with him last week).

It's not joint pain, it's muscle pain. My joints sometimes hurt, but not to the point where I can't use them. It's all muscles which is what throws doctors off. They want it to be my joints.
Posted 9/8/2016 2:40 AM (GMT 0)
And thank you very much for the suggestions. :) I do have collagen everyday (BioSil) and collagen powder i put in my smoothies. I'm not allowed to take tumeric/curcumin because of my genetic profile and my food sensitivity lab test. It causes inflammation in my body for some reason.
Posted 9/8/2016 2:44 AM (GMT 0)
JSlag pain sucks and it sucks the life out of you. I am so sorry you are going through this.

I would hope you find a llmd and get on treatment and maybe the pain will lessen.

I had pain so bad and narcotics did not help it. I was crying a lot. I tried everything that was legal and nothing touched the pain.

The only way it went away was with treatment. It was a suckie for those months that I had to just live through the pain. Finally, little by little it went away and then I was scared as heck it would come back.

Good luck and wish I had more of an answer other than my experience.
Posted 9/8/2016 3:56 AM (GMT 0)
Cordyalis is really good ..also some do kratom tea..or maybe thc edibles ..? Kava kava tea numbs out maybe it is a magnesium thing too...iv phosphatydle choline and ala helped my nerve pain ...they usually will give gabapentin like candy ? Its in your file you are labeled a seeker
Posted 9/8/2016 4:22 AM (GMT 0)
I had all over pain for years, is was really bad for at least five. What I learned is you have to learn and self analyze your pain, as Drs will not be able to help much directly with pain.

While your waiting for the lyme to go away you need to manage your pain, not so much with drugs, but with physical improvements to your circulation. Improved circulation will also aid in detoxing your muscles. If you dont own a foam body roller, go get one. Under $50 at any sports store or big box retailer like walmart and target ect. You - tube has plenty of videos on muscle release using these "tools". This helps to loosen the surface fascia, but deep muscle pain needs to be delt with a golf or lacross ball. Tennis balls feel better, but dont provide much lasting releife as they are too soft. Once you learn it, this is more effective than massage in the long run, even though massage feels better short term.
Posted 9/8/2016 6:35 AM (GMT 0)
Glad to hear you have a new LLMD. you could try some herbs, like Bluelyme suggested to see if that helps. and try to boost your immune system/detox?

How about a IV push of vit C + Glutathione? those made me feel very well for a few days, and it shouldn't contradict your current treatment. if you feel a little better with them, you know that your immune/detox path needs to be worked on.
Posted 9/8/2016 1:41 PM (GMT 0)
I'm so sorry you're in so much pain. It is not fun at all. You didn't mention what kind of pain. If you did I missed it. I have peripheral neuropathy and it can really kit my butt. I take Gabapentin and Low dose naltrexone (LDN) but neither one helps much. My LLMD is increasing the LDN but first I have to finish the first round. Hopefully it will help more once it builds up. I just read a study that doctors give more narcs to men than women. I'm so glad you found a LLMD

What helps me the most is Kratom. I have to eat and the taste is most unpleasant. If you are thinking about it you'll have to hurry. Unfortunately, the DEA is in the works to make it a schedule 1 substance at the end of the month. Which is totally stupid. It helps so many people and doesn't affect your live. I buy the Red Strain Maeng Da. It's the one that works best for me but everyone is different. Anyway it's legal until the end of the month. I bought a lot of it to stock up. Also I leave in a state that had medical marijuana. For me it really doesn't take away the pain. I just fall asleep. I use a vaporizer which
supposedly makes you only get the THC.

Do you have a detox plan? Not always as it is with Lyme, taking an epsom salt bath and then the infrared sauna as well as several others does help with the neuropathy. You can buy portable infrared sauna for around $200 or less. For me, I didn't think it would help but it is one of the best detox methods for me.

I can let you know about what vendors to buy Kratom. Also if you don't have a detox plan just let me.
Best of luck.
Posted 9/8/2016 2:59 PM (GMT 0)
I just found a forum on healingwell on chronic pain. I'm just starting to read it and I thought of you.
Posted 9/8/2016 3:16 PM (GMT 0)
JSlag - I am very sorry you are hurting this much. I fully understand because I, too, am in the same circumstance. I do have a LLND, but in over 2 yrs. I have not felt any improvements. I saw a new doc last week and I do not think he took my constant pain seriously. One thing I did take away from that appointment was him saying that along with lyme I must have the parasite Protomyxzoa and hence he suggested the Biocidin for that along with other aggressive treatments that I just am not prepared to do at this time ( I am feeling quite fragile at moment). If you scroll down to this forum's 5th page - look for my previous post "what else now?!" Project posted there a link to the symptoms of the parasite I mentioned. See if that relates to you- if so, then keep taking that Biocidin. Since you are herxing on it, it means it is "hitting" something hard. Please don't lose faith JSlag!
Posted 9/8/2016 4:33 PM (GMT 0)
Interesting, starting reading on Kratom and people actually got enough signatures for the white house to review.

https://petitions.whitehouse.gov/petition/please-do-not-make-kratom-schedule-i-substance
Posted 9/8/2016 6:26 PM (GMT 0)
Would you consider using acupuncture? It was the only thing that was helpful to my pain levels, it helped more than any pharma drug did.

If you decide to try it, ask around for referrals for a highly intuitive acupuncture therapist that has had many years of training, many years of apprenticeship and many years of working with it on their own (in a hospital or private practice). They are the only ones worth checking out in my opinion.

I like using this site to help find acupuncture and herbalists, as they usually list quite a bit of information either on this site, or on the practitioner's personal site: /www.acufinder.com/

And I would encourage you to get started with herbal protocols, since you can't seem to find someone that knows how to help you. I usually recommend Buhner's as it's very comprehensive (there's even a protocol for pain) and is capable of being tailored to suit your specific needs of healing.
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