Can someone help me?/Severe symptoms

SleepingDaisy

New member
Joined
Jul 26, 2021
Messages
4
Hi, I'm new here, but I have had fibromyalgia and chronic fatigue for 12 years now and I really need some help.
Every six months or so, I get a bad flare up after which my health would get worse. I've tried staying as active as possible, eating healthy and taking supplements, but nothing works.
Now I'm bedridden and so tired that I have to take medication to stay awake. Doing even the tiniest thing has become excruciating. I'm really desperate. I feel like I've lost my life.
Please, can anyone help me?
If you have been in a similar state, could you tell me what worked for you?
Is anyone else having severe symptoms?
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi SleepingDaisy,

I'm so sorry you're going through that - it sounds absolutely awful. I have had a couple of flares like that, ending up bed-bound for months at a time and just desperate with pain. I think that, while I did and continue to do all of the things you describe above (light exercise, healthy diet, supplements) the key was getting a handle on my stress levels.

I worked with a neuropsychologist, who helped to pull me out of my worst period. He explained that we wind up stuck with our sympathetic nervous system (fight/flight and adrenaline/cortisol) running in overdrive, and in the meanwhile our parasympathetic nervous system (rest/digest/repair and all the happy hormones) doesn't get a look in. He got me to do breath work exercises and safe-space visualisations to trigger my body to switch from one to the other - the key is to get your body to slow down and recognise that it is safe.

He also introduced me to the idea of "radical acceptance" - I had to scan my body, recognising my pain, but telling myself that what I was feeling wasn't a threat. He got me to tense and then release each muscle one by one, from my head to my toes, as I did this. I had to be really dedicated - practising all of this stuff several times a day - but I think it really helped me turn the dial down on a bad cycle of re-triggering that was keeping me stuck.

I recommend reading up on psychologist Paul Gilbert's theories of the three human emotional regulation systems, and using self compassion to pull ourselves out of a stress state. I hope something there helps, and I'm sure others will have more ideas for you here - there are a lot of people who have been dealing with this much longer than me 🌼 Please let us know how you get on.
 

Gardener

Member
Joined
Jul 14, 2021
Messages
16
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
Sorry to hear your having a bad flare. Have you tried LDN. After one dosage adjustment my fibromyalgia symptoms were gone. The first month the pain and fatigue decreased significantly. Then by the second month the brain fog lifted and pain/fatigue went completely away. New research is showing fibromyalgia is a autoimmune inflammatory disease.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Sorry to hear your having a bad flare. Have you tried LDN. After one dosage adjustment my fibromyalgia symptoms were gone. The first month the pain and fatigue decreased significantly. Then by the second month the brain fog lifted and pain/fatigue went completely away. New research is showing fibromyalgia is a autoimmune inflammatory disease.
Hi Gardener,

I've been reading about Low Dose Naltrexone with some interest! That is extraordinary, that it eliminated your symptoms all together. Have you experienced any side effects?
 

ginanicole12

New member
Joined
Aug 4, 2021
Messages
2
i’m taking ldn and it helped a lot at first and gave me more energy but i’m currently having an awful flare up and am bed ridden like you. i’m not sure the ldn is working for me due to this.
as far as side effects go i have really weird dreams and i noticed an increase in anxiety. but nothing super serious! it’s worth a shot! feel better
 

Warbucks

Member
Joined
Jan 3, 2015
Messages
10
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
New York
Sleeping Daisy I am relatively new here also but at the age of 81 have many problems much self. As a man we are in the minority as Fibro seems to be a female exclusive problem. But back to your problem. Your age and any other thing thaat might lead us off fibro. I have another autoimmune disease that is attacking my joints and I now have to titanium knees and two shoulders. I also have spinal stenosis so many times I have no idea whether the pain, fatigue and other problems are from fibromyalgia or??? If I,am constipated for example the intestinal track can become impacted and press against the nerves in that area causing excruciating pain in my button, hips and lower back. My rheumatologist has no idea what it is A fibromyalgia flare or something else.We are all in this same boat. I get up early in the morning no matter how I feel. Go to bed at midnight normally and up between 3 or 4am for the day. We can either give up or smile and tell the pain to get lost. Life is to short to give up early and think we are not strong enough to persevere about fibromyalgia.
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
754
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
SleepingDaisy: Praps my main experiences with additional flares inside of my long-term continual one are of help:
I - only speaking for myself - have always been able to detect triggers using symptom pinpointing and tracking via symptom & treatment diaries. It takes time to develop and research, but it was always worth it.
My longest big flares were caused by treatments, esp. meds, supps or herbs, as things we take are more long-term & I often didn't realize it was from them. Shorter flares from physio treatments and overdoing activities (often more than 2 per day, more than 1 or 2h, sometimes just more than 30' of something may be too much, even/especially if I feel fine ("normal at last") while doing it).
 

Gardener

Member
Joined
Jul 14, 2021
Messages
16
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
JEMIMA-
LDN -low dose naltrexone side effects were only a few nights of insomnia and then never had problems with sleep. My 9yr old son thinks he has a new mommy. I have so much energy, exercise frequently, and just feel alive! Please look into it. It hardly has any side effects.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
JEMIMA- fires
LDN -low dose naltrexone side effects were only a few nights of insomnia and then never had problems with sleep. My 9yr old son thinks he has a new mommy. I have so much energy, exercise frequently, and just feel alive! Please look into it. It hardly has any side effects.
It sure does sound interesting! Next time I get an audience with my doctor I'm going to talk to her about it. Thank you 🌻
 

Gardener

Member
Joined
Jul 14, 2021
Messages
16
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
i’m taking ldn and it helped a lot at first and gave me more energy but i’m currently having an awful flare up and am bed ridden like you. i’m not sure the ldn is working for me due to this.
as far as side effects go i have really weird dreams and i noticed an increase in anxiety. but nothing super serious! it’s worth a shot! feel better
I had to increase LDN dosage from 4.5mg to double 10mg because I still had lingering fatigue and pain. That completely took all of my symptoms away. You might have to increase.
Good luck.
 
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