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A MyFibroTeam Member asked a question 💭
Brisbane, AU

***sorry long rant follows***

I’m finding every symptom is worsening. I don’t even remember the last time I smiled or laughed that wasn’t sarcastic. Yet tears I’m totally familiar with. I’ve started with a new GP at the same practice and at least this one seems to want to make changes that may influence my conditions on a positive manner rather than leave me to deteriorate on my own.

I’ve changed my pain killers to an extreme opiate level in dosage but have seen a pain specialist and we are… read more

September 12, 2018
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Answer Summary

Members connected deeply over the question of coping with deterioration, sharing raw experiences of severe pain, extreme fatigue, cancelled... Read more

Members connected deeply over the question of coping with deterioration, sharing raw experiences of severe pain, extreme fatigue, cancelled social plans, and the grief of losing their former lives, with several describing the emotional weight of feeling like a burden and questioning whether their current state is a prolonged flare or the new normal. Several members offered practical strategies they've found helpful, including reducing opioid use after learning it can worsen symptoms, trying alternatives like acupuncture, CBD, and magnesium supplements, pushing through to get dressed daily even when showering feels impossible, and focusing on small joys like time with grandchildren despite days of recovery afterward. A recurring theme was the importance of addressing root causes through diet changes, food allergy testing, working with holistic practitioners or psychiatrists for PTSD and mental health support, and holding onto hope during the darkest moments while acknowledging the profound mental and physical toll of living with chronic pain.

A MyFibroTeam Member

Thank you for sharing! This post is the battle I have been fighting for the past year. I just turned 30. It’s nice to know I am not alone. I canceled my 30th birthday party and pretty much any social outing ever because my pain is so bad. I rarely feel happy or joyful, but commonly frustrated or sad. I almost feel like I am grieving for my old life. Some days I don’t want to cope with the idea that I will have to live with this the rest of my life, while other days I have the energy to keep fighting.

Have you tried some alternatives to pharmaceuticals? Acupuncture and CBD didn’t cure my pain, but makes it manageable most days.

September 12, 2018
A MyFibroTeam Member

Yes Christine, but what is causing the inflammation in the brain? I ended up with Encephalitis and unresponsive for 2 days. The cause of my scenario was Herpes Simplex...bug that gives one cold sores. Dormant little mite that it is...sx are not always noted outwardly. An immunosuppressive situation. As is fibromyalgia. I have
lived with fibromyalgia for 25+yrs. our bodies are screaming at us to find/get to the root cause. There is an approach to resolve the root cause....one step beyond treating symptoms.
Do go on the hunt (google) for the root cause of fibromyalgia. A holistic practitioner is the one to make the connection between fibromyalgia and it’s root cause. Our family practitioners/rheumatologists may not/do not have the background to make the connection - our pain is the result of food allergies, preservatives, along with the root cause, most often, being chronic yeast overgrowth. BUT, there are other viruses that are also known to be the culprit. Do, do, do check it out. Life is too short to live with pain that IS treatable. Any ? do email me ( (Email address can only be seen by the question and answer creators)) or leave me a message on FB. My ID on FB is same pic on this site.
I found the connection when googling and brought the article with me to family practice doc appt—— for proof. No wonder they think it's all in our head when every lab test “they” connect with fibromyalgia comes back within normal limits. They are not aware of this connection. One asks why????? Treatment = diet. No meds.
Go girl go! You r way to young to live with this.

September 18, 2018
A MyFibroTeam Member

But it is not worth a try...rule it out. Preservatives are having a huge impact on our bodies d/t most everything we consume has preservatives in it. Preservatives are an unnatural substance to our body and esp, these days, with the quantity of items that all contain such.
Dairy is probably a more common sensitivity.
Sugar....another tough one but then there is the but.......
When ruling out diet one does have to follow the diet for a considerable amt of time in order for our bodies to rid itself of all the impurities.
And yes, there are many “root causes” out there creating fibromyalgia. Along with the possibility that a person may be dealing with multiple diagnoses.
One author, I recently read, feels that 80+% of medications would not be needed if everyone ate a healthy/fresh diet....
Have you gone through with being tested for food allergies?
Do take care...it would be such a blessing if all could take this diagnosis and just stuff it in the garbage!
I will add the list of foods that contain yeast.... just in case🙃

September 21, 2018
A MyFibroTeam Member

This may be true for some, but not for all.

September 20, 2018
A MyFibroTeam Member

Okay, I’ve been dealing with a disease of the brain, yes the brain for basically my whole life. I’ve not been working for 3 years now and it has given me time to really go over things and make some major conclusions. It started out that I had so much pain in my neck and hip and shoulder. I was having migraines and was so exhausted I felt as if I could just lay down and roll up into a ball on the floor and go to sleep anywhere. Then came all the specialists trying to find an answer for the specific pain in my neck, shoulder, hip and so on. They would all come back basically saying you show wear on your body parts according to my age and it really wouldn’t affect an average person like it was me. It has taken me decades to put together the pain in my body has directly to do with my mental health. This was really hard to grasp for me. Your brain doesn’t have just one place that pain is derived from it is all over making it harder to treat. I’m not against the use of opioids but I will admit after long term use and having to up the dose to get more relief they can start to cause a negative effect. They do cause your nerve pain to intensify and in my case make me more sluggish and tired feeding my depression. So be careful I realize how terrifying it can be to think about not having them. Every now and then when I feel the hydrocodone isn’t working I ask to be put on a different form such as Oxycodone for a month. This seems to help break the hold one medication can have on me over the other. I have recently started to have manic episodes where I can’t sleep. I have sleep medication and muscle relaxers and pain medication but just can’t turn my brain off. I hav a long history of mental illness in my family with people who have self medicated with alcohol or other drugs. I also had to sit down and seriously think about my own issues. My next move is something I’ve done previously but have been very resistant to finding a good psychiatrist to deal with PTSD issues anxiety and on working on how to reduce the overactivity of my brain/nervous system. I know this is a lot of information and I short handed 20 plus years of dealing with fibromyalgia. Ask me anything I’m not embarrassed about having depression or not necessarily wanting to commit suicide but if I didn’t wake up the next day and was free of all this pain it would be OK.

September 15, 2018

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