18 years of pain, recently diagnosed.

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,116
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I agree wholeheartedly with the above posts on medications. Mostly pain medications do more harm than good, in my opinion. I have had significant improvement in my pain level, frequency, and severity since I started really paying attention to the natural things that help anyone to be healthier over all. If your body is as healthy and strong as you can make it, despite pain or difficulty or disability, you will have a better life, guaranteed. There's no magic cure, but there are so many things that people can do to help themselves.

I don't think it's anyone's fault if they start out thinking they have to rely on doctors, because in the western world we have been trained to think that doctors are the only people who know what to do and the only ones who can help.

But often, especially with fibro, they can't help, and that produces terrible frustration and anger and anxiety, all of which make the fibro worse. This is a vicious circle. And people don't know how to get out of it because they think they have to depend on doctors.

But the truth is, you don't have to depend on doctors.

In fact, it is up to every adult individual to take care of him-or herself. No matter what the medical problem is there are things any individual can do to help their body along. Diet, exercise, maintaining good mental health, stress control.....many more things. And it's up to each person to do as much as they can with those things. Some can do a lot, some not very much, but everyone can do something.

It is amazingly freeing and exhilarating when you take charge of your own body's problems and decide to work on them independently of doctors. Doesn't mean you shun all doctors, just means you add in your own work on yourself. It's amazing how much better a person feels when they stop complaining bitterly or feeling sorry for themself about things that are not changing, and start doing things that are geared toward better overall health. I don't know of anyone who has cured fibro with this approach. But I believe that if a sincere effort is made there's no way it won't help. I know...I was the feeling-sorry-for-myself, why-doesn't-anyone-help-me person, and I changed that and am so much better off.

Some medications are necessary, of course. I am not saying they are all bad! But relying on doctors for everything, and expecting someone else to help you without doing all you can to help yourself is the road to despair. Believe me. I have been on that road. I'm on a different one now and want to encourage everyone to do the same.
 

srdodla123

Member
Joined
Aug 2, 2020
Messages
28
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
NJ
I agree wholeheartedly with the above posts on medications. Mostly pain medications do more harm than good, in my opinion. I have had significant improvement in my pain level, frequency, and severity since I started really paying attention to the natural things that help anyone to be healthier over all. If your body is as healthy and strong as you can make it, despite pain or difficulty or disability, you will have a better life, guaranteed. There's no magic cure, but there are so many things that people can do to help themselves.

I don't think it's anyone's fault if they start out thinking they have to rely on doctors, because in the western world we have been trained to think that doctors are the only people who know what to do and the only ones who can help.

But often, especially with fibro, they can't help, and that produces terrible frustration and anger and anxiety, all of which make the fibro worse. This is a vicious circle. And people don't know how to get out of it because they think they have to depend on doctors.

But the truth is, you don't have to depend on doctors.

In fact, it is up to every adult individual to take care of him-or herself. No matter what the medical problem is there are things any individual can do to help their body along. Diet, exercise, maintaining good mental health, stress control.....many more things. And it's up to each person to do as much as they can with those things. Some can do a lot, some not very much, but everyone can do something.

It is amazingly freeing and exhilarating when you take charge of your own body's problems and decide to work on them independently of doctors. Doesn't mean you shun all doctors, just means you add in your own work on yourself. It's amazing how much better a person feels when they stop complaining bitterly or feeling sorry for themself about things that are not changing, and start doing things that are geared toward better overall health. I don't know of anyone who has cured fibro with this approach. But I believe that if a sincere effort is made there's no way it won't help. I know...I was the feeling-sorry-for-myself, why-doesn't-anyone-help-me person, and I changed that and am so much better off.

Some medications are necessary, of course. I am not saying they are all bad! But relying on doctors for everything, and expecting someone else to help you without doing all you can to help yourself is the road to despair. Believe me. I have been on that road. I'm on a different one now and want to encourage everyone to do the same.
Well said @sunkacola
 

Peachy

Member
Joined
Jan 14, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
06/2017
Country
CA
Hello,

Sorry you’re having to deal with all this. Yes, I share many of the symptoms you’ve mentioned. I’ve found meds to hurt me more than they help so I’ve cut as many chemicals as possible from my life and that has helped more than pharma. I use Ayurveda to great effect. I wanted to gently suggest to you to perhaps ask that you be tested for narcolepsy during your sleep study. I am narcoleptic and your day and night sleep/fatigue issues and symptoms sound very familiar to me. Just a thought. Worth at least ruling out If nothing else. It’s much underdiagnosed and I suffered for decades before a smart doc joined the dots. Many people with narcolepsy also have chronic pain conditions and are often comorbidities. Your drunk legs’ sound like possible cataplexy. I’m not diagnosing you. Just think if you’re having a sleep study anyway, it would be valuable to know.
 

TinyBec

New member
Joined
Nov 23, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
I'll never understand why you all take so many chemicals. They cause more problems. If you use vitamins, supplements and natural remedies you'll get relief without side effects and other problems. Diet is very important as to how you feel. I realize some medicine is helpful but look at long term.
Just research before you pop that pill. I'm taking a thyroid pill but would welcome another way so I'm researching.
I was taking alot of pain and spasm medicines and still hurt. Once I weaned off of them and used sprays and lotions and pot I feel alot better. Maybe some of you could try it.

Maybe some of us have tried it...I have tried diet, exercise, & natural remedies... for a lot of the things I have experienced, it's been 18 years. I have NEVER in my life had a normal lipid panel (because I have hereditary high cholesterol) I have even tried being a vegetarian to lower my cholesterol, and it went UP! Yesterday after only 6 weeks of being on Lipitor, I had a completely normal lipid panel! So, yes I would love it if I had another option, I don't...nothing else has worked and I'd rather take "chemicals" than die of a heart attack and leave my son without a mother. Thanks for your advice though.

Hello,

Sorry you’re having to deal with all this. Yes, I share many of the symptoms you’ve mentioned. I’ve found meds to hurt me more than they help so I’ve cut as many chemicals as possible from my life and that has helped more than pharma. I use Ayurveda to great effect. I wanted to gently suggest to you to perhaps ask that you be tested for narcolepsy during your sleep study. I am narcoleptic and your day and night sleep/fatigue issues and symptoms sound very familiar to me. Just a thought. Worth at least ruling out If nothing else. It’s much underdiagnosed and I suffered for decades before a smart doc joined the dots.
Thank you! I was actually just telling my husband yesterday that I believe I have Narcolepsy 2...I have had sleep paralysis, sleep walking, talking, and hallucinations my entire life. I will bring it up during my sleep study!
May I ask how you deal with the fatigue? I've been trying some natural remedies like gensing and Schisandra...they help some, but not much.
 

Peachy

Member
Joined
Jan 14, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
06/2017
Country
CA
“sleep paralysis, sleep walking, talking, and hallucinations” are classic narcolepsy symptoms, as is EDS (excessive daytime sleepines). Also, long sleeps yet still exhausted after and needing to nap during the day. I can function for 4 hours then my body shuts down if I don’t sleep. My doc tried me on various stimulants but they made me sleepy (paradoxical reaction), and sedation at night, but pharma hasn’t helped me. I rely on specialist presribed naps during the day to function and reset my brain. I’ve removed sugar, alcohol, processed food and eat lots of brain healthy foods with omega 3. Also, I take herbs like Maca, blackseed oil, etc.. to support my system. Reducing stress is huge as, like with fibromyalgia, it’s one of the biggest triggers of an attack if not managed. lifestyle modifications have helped me the most. Learning to slow down, be kind to myself, recognize that my best effort might look different to others, and listening to the signals my body sends has been key in managing the condition. Many of the protocols that help fibromyalgia also help narcolepsy. I wish you luck.
 
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