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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyFibroTeam Member asked a question 💭
Boise, ID

Im tired. Sick of dealing with this. I have had fibro since 9/09. I've tried every prescription known to man. With that I've come to the conclusion that with fibro your body is sensitive and you are burdened with horrible side effects or the medication doesn't work for the pain, brain fog, fatigue. I've also tried every herb, plant, elixir, out there. I've spent hundreds of hours combing the internet in search of an answer. It's so frustrating, often times I think of taking my life from the… read more

August 9, 2017
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Answer Summary

Members rallied around someone feeling exhausted and hopeless from years of trying medications that either caused unbearable side effects or... Read more

Members rallied around someone feeling exhausted and hopeless from years of trying medications that either caused unbearable side effects or simply didn't work for fibromyalgia pain, with many sharing their own frustrations about being dismissed by doctors or labeled as drug-seeking despite genuine suffering. Several members offered practical suggestions, including switching to pain management clinics that better understand fibromyalgia, exploring natural remedies like medical cannabis or CBD oil (which some said provided hours of relief without making them high), trying Lava Hot Springs mineral baths for lasting pain relief, and working with naturopaths to test underlying issues like cortisol, melatonin, serotonin, or Substance P levels that might be making symptoms worse. A recurring theme was the deeply personal journey of finding what works for your own body, the importance of advocating fiercely for yourself when doctors won't listen, and the comfort of knowing you're not alone in this exhausting fight.

A MyFibroTeam Member

I hear you. I was at the end of my rope. Fortunately, medical cannabis is legal in Illinois for treating severe Fibromyalgia. I've never even smoked in my life. The dispensary was very helpful helping me find an oil you place under your tongue. It does NOT make me high. I have 4-6 hours of pain relief never experienced with any med I've been on. IDK if your state allows medical cannabis use, but if it does, I encourage you to keep an open mind. God bless. I hear you dear.
Peace & gentle hugs, TR

August 9, 2017
A MyFibroTeam Member

@A MyFibroTeam Member, you sound like you are even more sensitive to medications than I am, and given I haven't had a very good time with meds and side effects, I can't imagine how badly that has affected you.
I ended up telling the Docs to jam their meds after they put me on Seroquel, after just 5 weeks at HALF the dosage they prescribed, I was sick as, in pain, putting on weight like no tomorrow, and I just felt severely ill in general. Had blood tests and found my insulin had gone through the roof (Seroquel has been known to cause Insulin Resistance and trigger diabetes). So I was super angry.
I got off all meds and went to a naturopath who decided to run some tests of her own and we found that I was high in cortisol and low in melatonin, so we began treating that to reverse both issues. Bearing in mind here, my biggest complaint was severe insomnia which was causing a domino effect for all my other symptoms. For you, I know you've said you've tried all the natural stuff, but I wonder if there is an underlying problem that they need to find that is exacerbating the Fibro pain. I have read that if you are higher than normal in Substance P (I think it resides in your spinal fluid) then you will have more pain (or pain signals to be correct). See if you can also get your serotonin levels tested; Fibro people tend to have lower serotonin levels which is conducive to higher pain levels, as one of the functions of serotonin is as the body's natural pain relief. I am increasing my Serotonin levels naturally at the moment, which is safer than any meds to do the same thing, it's basically just a powder with a bunch of Tryptophan in it, which the body uses to make serotonin. Dopamine is another one but you have to be careful here as many meds are designed as Dopamine Agonists (used to treat Parkinson's, RLS etc), the issue here is that for the first few years of treatment to increase dopamine it works like a miracle, then your Dopamine receptors max out and it doesn't matter how much you up the dose, you can't get more dopamine in, or enough to make any difference, so for a while you will be great again, and then you will crash and burn. Or at least that is what I have been told by my specialist. I haven't researched natural ways to increase dopamine yet, but maybe that's an avenue for you? I believe that the best way forward is to find and better understand the problem and then treat the cause, not the symptom. Doctors don't think this way. I have been on so many meds and they all either didn't work or they worked in reverse (Tramadol did the same thing to me after awhile - I was in more pain on it than off it, but coming off it made me just want to die).
If everything about Fibro is connected to a dysfunction in a part of the brain then that's what we need to be targeting with treatments...... Good luck, I don't know if any of this was helpful, but I hope you get some relief soon.

August 9, 2017
A MyFibroTeam Member

I have been there, you just get tired of the roller coaster of every thing. If medical marijuana is not legal, try some CBD oil from Palmetto Harmony. They have a vape also. I wish I could help you. Lucky for me my doctor keeps me with plenty of Vicodin., and even this just takes the edge off. Were you seeing pain management?

August 11, 2017
A MyFibroTeam Member

I see you live in Idaho. I treat my fibro all natural. One of the ways that really helps a lot is I go up to Lava Hot Springs in Idaho. It's really inexpensive to stay there and the benefits of soaking in the mineral water are so wonderful I have no words. The pain relief last for days after. It's heavenly to he pain free while I'm there.
Have you tried it?
xxxx

August 9, 2017
A MyFibroTeam Member

I was on gabapentin and lost my mind, Lyrica did the same thing. Took flexeril for several years and it worked barely, what it did do however is make several of my teeth chip. That is one of the side effects. I guess I should've looked into it more closely. I've had every test because here they won't diagnose you with fibromyalgia unless they rule everything else out. I've had it since 2009 and only recently have come to terms with it. I've had MRI's, cried for help, prayed this wasn't happening. I was in pain management, they prescribed me tramadol which only heightened my pain, he refused to take me off of it even though I would go in crying in pain. The nurse once said, "I bet you wish he would just prescribe you opioids." I told her I didn't care what he gave me as long as it worked. I was even prescribed Seroquel which is a tranquilizer. I guess we can hope they will figure this out. I am a business owner so I haven't tried to get disability yet. But life is very difficult for sure. I do see a DO who is also a chiropractor. Thank you for your suggestions I appreciate it.

August 9, 2017

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