Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Remission is very possible. Here are my non-secrets of how I achieved a about a 90% remission for about 15 years living a normal life.
First off I became a vegetarian because everything that I ate my body acted as if it was allergic to it. As soon as food touched my mouth, something would happen whether it be pain or something else. This went on for years after a bout with mono around age 20 or so.
I tried massive doses of vitamins vitamins, diet change, and whatever else was around at the time (early 80's). The only thing that felt good was fasting for 2-3 days at a time. I went from doctor to doctor all of them very frustrated with me when I couldn't describe my pain. I basically hurt everywhere Dr's could not understand how to treat body pain that wasn't localized to one area. Of course blood tests came back normal all the time as they do today. At this point they all said it was psychological based, but I knew otherwise.
So how did I achieve a remission about 8-10 years later? Basically none of the above treatments had any effect. The body reactions just slowly eased up on it's own, no rhyme or reason. It wasn't as if any treatment helped me other than my own body had showed some mercy.
After Fibro had eased up my life then became stressful, got married had a child, started a business etc. I still experienced some low level Fibro related issues like still reacting to food and some feet pain, yet nothing like it was prior. My life was just basically NORMAL. No flares, just little anomalies that I accepted as being part of my body functioning. After 15 years of marriage, stress etc still no sign of fibro returning.
At some point in time around 2008 I noticed my body changing. Fibro started to return gradually and I just didn't make the mental connection. No major life changes, no abnormal levels of stress, it just kept getting worse and worse each year. Maybe it was the excessive amount of exercising? Who knows? I tried herbs and and various other stuff that would help a little for a month then stop. Little by little over a several year span I had to stop all of my stretching, exercising, hiking etc. In 2009 I had to give up my business.
Fibro originally showed it's ugly face after getting mononucleosis. I'm not sure why it mostly left or why it's back again. All i can say it's pure hell this time around and every little thing I do makes it worse. Diet, vitamins, snake oil cures do not help. Lots of meds at times controls some of the pain and that's only when I'm laying down which encompasses 10 hours of my day.
During remission, I was an exercise fanatic within the time span of several years prior to the fibro returning. I'm wondering if that's what triggered its return. So I'm one of the rare people with hopes for another remission... hope. I'm just not sure how likely my hope is. I don't believe there is any one magic cure and I'm certain for me that it stems from having an overactive central nervous system. Somehow I think one of the causes lies in the bacteria in my gut. I have no way to prove it other than reading theories based on the same assumption. I stopped trying to figure it all out and I can't afford to go doctor shopping. As long as I have a doctor prescribing me drugs to dull the pain I'm content, or at least I make myself believe so.
I'm 56 now and waiting for another remission. If it doesn't happen at some point in time ( before money runs out) my plan will be to take trip to the Grand Canyon and see what it's like to fly in my car. Until then I'll have hope.
Remission is rare, then again they say about 10% of us males get Fibro. Will I beat the odds and get some quality life back or did I already pass go and get my get out of Fibro free card?
First off I became a vegetarian because everything that I ate my body acted as if it was allergic to it. As soon as food touched my mouth, something would happen whether it be pain or something else. This went on for years after a bout with mono around age 20 or so.
I tried massive doses of vitamins vitamins, diet change, and whatever else was around at the time (early 80's). The only thing that felt good was fasting for 2-3 days at a time. I went from doctor to doctor all of them very frustrated with me when I couldn't describe my pain. I basically hurt everywhere Dr's could not understand how to treat body pain that wasn't localized to one area. Of course blood tests came back normal all the time as they do today. At this point they all said it was psychological based, but I knew otherwise.
So how did I achieve a remission about 8-10 years later? Basically none of the above treatments had any effect. The body reactions just slowly eased up on it's own, no rhyme or reason. It wasn't as if any treatment helped me other than my own body had showed some mercy.
After Fibro had eased up my life then became stressful, got married had a child, started a business etc. I still experienced some low level Fibro related issues like still reacting to food and some feet pain, yet nothing like it was prior. My life was just basically NORMAL. No flares, just little anomalies that I accepted as being part of my body functioning. After 15 years of marriage, stress etc still no sign of fibro returning.
At some point in time around 2008 I noticed my body changing. Fibro started to return gradually and I just didn't make the mental connection. No major life changes, no abnormal levels of stress, it just kept getting worse and worse each year. Maybe it was the excessive amount of exercising? Who knows? I tried herbs and and various other stuff that would help a little for a month then stop. Little by little over a several year span I had to stop all of my stretching, exercising, hiking etc. In 2009 I had to give up my business.
Fibro originally showed it's ugly face after getting mononucleosis. I'm not sure why it mostly left or why it's back again. All i can say it's pure hell this time around and every little thing I do makes it worse. Diet, vitamins, snake oil cures do not help. Lots of meds at times controls some of the pain and that's only when I'm laying down which encompasses 10 hours of my day.
During remission, I was an exercise fanatic within the time span of several years prior to the fibro returning. I'm wondering if that's what triggered its return. So I'm one of the rare people with hopes for another remission... hope. I'm just not sure how likely my hope is. I don't believe there is any one magic cure and I'm certain for me that it stems from having an overactive central nervous system. Somehow I think one of the causes lies in the bacteria in my gut. I have no way to prove it other than reading theories based on the same assumption. I stopped trying to figure it all out and I can't afford to go doctor shopping. As long as I have a doctor prescribing me drugs to dull the pain I'm content, or at least I make myself believe so.
I'm 56 now and waiting for another remission. If it doesn't happen at some point in time ( before money runs out) my plan will be to take trip to the Grand Canyon and see what it's like to fly in my car. Until then I'll have hope.
Remission is rare, then again they say about 10% of us males get Fibro. Will I beat the odds and get some quality life back or did I already pass go and get my get out of Fibro free card?
My friend said a relative had fibro 15 years ago and is symptom free now. He's not sure what she took, but probably anti-depressants since I remember that was what was generally prescribed back then (as it is now).
I think mine was triggered by emotional trauma (repeated and sustained for about five years) for being a caregiver to an ill aging parent. I had to make life and death decisions continuously. That kind of hyper-vigilance likely put my nervous system in high alert.
Now that I learn more about this disorder by reading books on it, I am working on quieting my central nervous system down. I read an article that was written in 2000 that a significant number of people go into remission. So I am hopeful.
I'm also sorry for the trauma that you had to endure. Being a caregiver is an extremely difficult usually unappreciated task, very emotional draining indeed.
My so called hyperactive central nervous system was triggered by mostly having Hyperhidrosis, excessive sweating of mostly my hands and feet. Since a child my body has always been in a state of fight and flight which I believe wore me down, not to mention erratic blood pressure even on BP medication. I always knew that fibro would return, just earlier than I thought. I'm always looking for the lesson, what's to be learned from it all.
I rarely hear about people going into remission at least nothing I've seen on this forum. Tell me more of what works for you and how you are able to quiet yourself down. I've been on anxiety meds for the past rear. Sometimes it just gets so awful. I can now understand how mental pain is yet another component of physical pain. Both are debilitating in there own way. Sometimes I find the physical pain is easier to endure, but even that is an understatement. All I know is that it all gets so tiring.
After a few years of meds, and stress management, and yoga and so on, I had med-free 8 years of not much to notice....
Then life stress hit and so did a bit of aging and since a 2011 accident injury? Pfft.
But remission does occur and I am hopeful, as well, that I'll see it again.
Also, some people call it remission if meds fix up their symptoms, whereas I think of it as remission if I'm med-free (well, fibro med-free, anyway, I have epilepsy, Ican't skip that stuff!). So a lot of people do get great results and are doing well on this or that SSRI or what-have you. And I envy them, but I'm glad for them. Because it's more *hope*!
Here's the article, written in 2000, by Thomas K. Van Sistine, MD, that has the studies statics on remission.
I just got diagnosis about a month ago (although I have had the symptoms for several years), so I am reading a lot to learn about it. The books by Devin Starlanyl are very good. It is important that we educate ourselves so that we don't do the wrong things to exacerbate it.
The books said PAIN itself is a perpetuating factor in fibro, so we have to treat pain. I am getting trigger point needling (injection) and acupuncture to release the muscle knots. Also massages.
Since there is a psychosomatic component to fibro, I have to lower my anxiety and quiet my nervous system. Psychotherapy. Anti-depressants (but I was on it even before I got fibro). I also just started EMDR therapy (Eye Movement Desensitization Response) to help process the traumas that wasn't processed appropriately before (sort of PTSD). I don't know if it works yet.
I have to attack this from multiple fronts. Good thing I have good health insurance.
Now, if I can only figure out the right exercises for me...
In 2012 I was practically bedridden and had to go on FMLA. It was as if some thief came along and stole my life over night. As I lay in excruciating pain, I vowed that I would never give up searching for a cure. I began to read and research everything that I could get my hands on about fibromyalgia. I refused to believe that there was no cure, or at the very least that I would greatly improve.
It's been a long journey, but I have found a regimen that works for me and I'm very thankful to God for guiding me along the way. I have gone from daily pain levels of 8-10 to mostly mild symptoms with occasional flares. I would not consider myself in remission, because remission to me means symptom free; however I consider myself one who managed fibromyalgia well.
These are the things that have helped me the most:
1. Working with an Integrative Doctor who specializes in chronic pain
2. Following an anti-candida diet and using anti-fungals to treat candida and balance my gut
3. Removing night shades from my diet as well as several other foods
4. Getting massages 3x a month (more frequently in the beginning of my illness)
5. Aqua therapy in a heated pool
6. Heat therapy---hot Epsom salt soaks, hot tub, heating pads etc.
7. Medicinal marijuana (life saver for pain, stiffness, and tight muscles). I use a high cbd strain. Cbd cancels out the effects of thc, so I don't get euphoria--just great pain relief.
8. I am now following the paleo lifestyle, which is basically the same as the anti-candida diet
9. Very high quality supplements targeted for bone and joint relief as well as gut health.
10. 10-20,000 I us of vitamin D3 daily under a doctor's supervision.
I still am searching for something to help me get deep, refreshing sleep again though. I have alpha eeg anomaly, which is a beast to treat.
You can read my story on my blog: www.kickfibro.com
Best Wishes to you and feel free to reach out to me anytime!!
Currently I am searching for the right cannabis strain to treat it. I just got a new strain for sleep and have to gradually increase it over time to find the right dosage. I have a great day time strain called Cannatsu which gives great pain relief and energy for the day without any psychoactivity. I just got it and I love it. The one I got for night is excellent for pain and putting you to sleep, but only time will tell if it will help with deep sleep:
When I went to my sleep doctor recently, there were all these brochures for Xyrem. I don't think I have enough narcolepsy symptoms to get it (although some).
At this point in my life I've given up on finding a cure, nor do I have the money to do so. At best I try and manage the symptoms and hope that it eases up before my time here expires.
Sprawling I believe the key lies in the gut as well, as least a great deal of it anyway. The anti candida diet along with the antifungals helped me improve greatly. I was also put on various probiotics to help repopulate my gut appropriately.
I have read about leaky gut syndrome and how food seeps out of the intestinal walls and wreaks all kinds of havoc. It takes time, commitment, and the right doctor to assist in this process. I am considering doing another round of anti-fungals (under doctor's supervision) because I don't believe the that the systemic candida was entirely eliminated. I know my diet keeps it at bay though because I still follow it (the diet) closely. It's similar to paleo but a little bit stricter.
Doug Kaufman talks about this in his tv show: Know the Cause. You can also check him out on the internet as well.
Have you applied for disability? You would get medicare if receiving disability.
Stay out of the Grand Canyon please and come here instead.
Soft gentle hugs to you.