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Sep 24, 2018 · Chronic Back Pain for Years in Spine Health

@oregongirl Sorry to butt into your conversation, but your comment hit's home here as well. Our local insurance based medical community just wants to dispense drugs to treat symptoms. They are discouraged to do research on behalf of their patients, and we are left chronically ill unless we take matters into our own hands. There are other disciplines, but I just wanted to mention the one I found and trust. I have to pay out of pocket for her services, but she is very reasonable because she cares and is in it to help people recover. That is a MD who has completed the Functional Diagnostic Nutrition accreditation. There are other service providers with a FDN title, but it's better having an actual MD who can prescribe medicines when necessary. This doctor knows the human system and is data driven by unique tests that she knows how to read and correlate with your past medical test, and all tests that she/he may ask for. And, this wasn't a 20 minute appointment. They will spend an hour or how ever how long they need to get the information to or from you. I tell you in the two hour data dump at the end, with all the issues she found, and explaining how they all work together, and the game plan, that has to be fluid, because they do work together, etc., etc.. I mean, I'm a very complicated case. I messed myself up. I've got 6 current doctors and my PCP actually puts her hands in the air and says, "This is beyond my expertise", but in the last two years I've been with this FDN doctor I've grown stamina, and my day to day pain level has less jumps into the 8s or 9s, and my Fog has lifted substantially. The triggers are still there, and when they happen, nothing matters, no drug is going to stop the pain, but I do believe after I come out of that hell, I recover faster. I can't put a price tag on that. It may take me 3 or 5 more years to work myself out of this, but I think there is a path out of this. Maybe I've been lucky, but that's who I would look for if I needed a doctor and was willing to go outside your network.

Sep 13, 2018 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

@bluetwinkle28 One of my FMS members with Chronic Migraines and Chemical Sensitivity recently went on Aimovig successfully. She and her boyfriend prepared for the worst and she has been very happy with the results. I can't help you get into the Mayo Clinic with Medicare only. Sorry. It really is sad that people with disability find it more difficult to find the specialized help they need.

Sep 12, 2018 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

Thanks… My FDN doc, as well as my DOM, who follows Ben Lynch and uses his StrataGene report, has run all the genetic profiles against my medications. I'm on High doses as i said, like 400mg of Lyrica, and going higher and 120 of Cymbalta, 150mg of Topirimate, 50mg of Nortripityline, hopefully changing to Amitriptyline and going higher and 40mcg of Fentanyl. No doubt I have PTSD, and I'm somewhat depressed because I'm in pain, but I'm not in pain because i'm depressed. I've got a lot to live for. My back yard is a beautiful zen garden. I pay someone to make it so, if only I could go enjoy it. I want this pin pricking pain to go away so I can go hiking again. That's all. But, I do appreciate the thought. There is just so much they still don't know about neuropathy, and what is happening with this. They've been working on this for a long time. Trench foot, for instance, is Non-Freezing Cold Injury. I assume everyone has heard of that since so many soldiers had that happen to them in World War I. But soldiers, because they get stuck in cold environments , and aren't allowed to leave, have this happen to them frequently, but generally just in their hands or feet. Because of my stupidity, it's all over my body including my thighs and chest. At least my cold sensitivity and the Cold Pain, when it's at it's worst affects me all over. It may just be the TRPM8 going out of control. I don't even want to think about it. Everyone has their burden, I read your stories, and my members have so many issues as well, many having FMS as a secondary illness, as I. But FMS Pain, Primary or Secondary is equally bad, and it has the same mechanisms as the Cold Pain. The only difference is the drugs I listed up there work for FMS. Certainly not 100% Not even 60%. It depends, again, how damaged your nerve cells are. Some of my members can't take medications, and I listen to their stories, and situations they get themselves in, and I want to cry with them. The medical practitioners, at least here, are terrible when it comes to providing care for CSS suffers. All of them have PTSD from having to deal with their doctors. Sorry, I'm hurting. I'm right now laying on a biomat set low at 121F and my electric blanket, all aimed at my lower torso. I sleep with camp boots.
Good Night.

Sep 12, 2018 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

Hi All,

I've read a lot of your introductions so I know I'm in good company. I have lived in constant pain for 5 years now, both heat and cold pain. I was a mountaineer and apparently I hurt myself playing in the cold for too long, we believe. Sub zero conditions at high altitude for many hours, while, also, having Raynaud's, come to find out is not a good combination for, at least, this body. If I get chilled, even just into high 60s, I can go into a state of pain levels 8-9.5 for days with the only remedy but to heat my core to drastic temps. It caught me by surprise in August when the outside temps dipped to low 60s, and there I was for two days and two nights. I also have FMS as a secondary illness, requiring higher than I'd like doses of Lyrica and Cymbalta and others, just because the nerve damage that's caused during those times when I'm in that level of pain. It's not just in the mind, the body is actually tearing itself to pieces. So, I live at 5-7 pain level, whole body, every nerve, and take as much Opiate as they'll give me, but you have to know, nothing touches Cold Pain (unless you guys or gals know something I don't). I've certainly read all I can on it, and the genes that express it, etc. They are working on drugs to stop it, but will probably charge an arm and leg for them because they are for the certain kind of chemotherapy drug that expresses TRPM8, the cold pain gene (plus another one).

Anyway, I'm not looking forward to winter. I moderate our FMS support group, but I had to tell them what I was thinking that I don't know if I can handle doing this again. Of course they told me to leave the state, blah, blah, so easy to say. I just sent off for Quicken Will maker, but of course I'm a fighter. It's just when I was inside those two days in August, at true 9.5 for the second day, I knew I was ready. Well, I do have a Functional Diagnostic Nutrition doctor is very good and is investigating with me, a few new appointments to go to. Anyone heard of NES? My psychotherapist's dogs tumor magically shrunk to nothing just drinking coded water. What the heck, I'll even try that…

Well, I hope you all find your health and answers, and path to Love.