New to forum but need help with fibro (bit of a long one sorry!)

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MissValkie

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Hi there I'm quite new to posting on a forum like this. So apologies if my wording is a bit off or if this has been covered already. I was diagnosed with Fibromyalgia quite a few years ago now. Since then it has done nothing but grow worse and worse. Flare ups used to be every so often and last for very short times (1-2 days max) where it hurt to even have clothes touch my skin. However currently this flare up has lasted far longer. I have a stressful time at work currently so I get that doesn't help. But I've tried all the painkillers under the sun...or feels like it. Morphine helped a bit but then it wore off and...I'd rather not up the dosage and risk getting addicted o.o that sounds scarier to me. It is hard to work whilst my body just wants to scream at me constantly. The pain levels are just intense with numbness tingles...around the base of my neck and spine which surges through everywhere else. I literally have to drag myself up in the mornings out of bed, when I do rest it doesn't help. Warm baths/showers are the only things that somewhat ease it. I walk home from work every day (which can take between 35-50 mins) and that does nothing. I'm...honestly not sure what's left to try and...again sorry for going on but...if anyone has any advice? I've had specialists in hospitals investigate heart palpatations are but one symptom I've been shoved with for my fibro. Harder to concentrate and remember stuff sometimes. Any advice would be greatly appreciated.
 

Jemima

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DX FIBRO
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Hi MissValkie,

Welcome to the forum - don't worry about the length of post. That's what we're all here for!

To quote our wonderful moderator Sunkacola's wisdom, the best approach to fibromyalgia is not to treat the end symptoms - for example by taking all manner of painkillers - but rather to develop a management strategy that addresses the root of symptoms and minimises flare triggering in the first place. Lifestyle tweaks like dedicated stress management, sleep management, learning to pace (spoon theory!), examining diet, and integrating light exercise can make a really big difference to fibro - I know this from experience, having gone from bed-bound by pain to mobile and working through learning what my body needed. It can be done!

Stress is an absolute killer with fibro - a lot of people get stuck in a vicious cycle that sees them experience a stress response to their pain and other symptoms, which in turn re-triggers everything. Breaking this cycle is vital to get flares under control. I'd guess that there's a good chance you're in a stressed state, and that's the root of your heart palpitations too - unless you're experiencing a side effect of medication.

A psychologist helped me get a handle on being stuck in a stress response by encouraging me to practice what he called "radical acceptance". I had to learn to acknowledge my pain (rather than either ignoring it or catastrophising) and sit with it calmly, while telling myself that it isn't a threat - it's unpleasant, but it doesn't put us in any danger. This practice, in combination with breathing and meditation exercises, allowed me to get all those crazy stress hormones under control! In this area, I recommend reading up on the sympathetic nervous system and parasympathetic nervous system to better understand what's going on within your body and brain.

In terms of lifestyle, check out Sunkacola's pinned post at the top of the general discussion section of the forum. She outlines her advice for starting fibromyalgia managment, and it's great advice.

From there, you can also explore whether you might have a dietary or chemical sensitivity in play, and look at supplements that might support you further. I recently listed some of the supplements that people here have found helpful:

  • GABA
  • Melatonin
  • Boswellia
  • CoQ10
  • Alpha Lipoic Acid
  • Acetyl L-Carnitine
  • Vitamin D
  • B Complex
  • Vitamin C
  • CBD
  • Magnesium
  • Turmeric
  • NAC
  • D Ribose
  • Omega 3s
  • Lithium Orotate
The majority of us have to research, be our own guinea pigs, and put on our detective hats to get this condition in line! There is so much fantastic advice and so many interesting ideas here in the forum; having a poke around and checking out other people's experiences may be really useful for you too.

Good luck 🌻 ask any questions you like, and vent any time!
 

MissValkie

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Sep 28, 2021
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Hi Jemima,

Thank you so much for replying to my post. It's nice to talk to someone who knows how it feels and has struggled like me. Not that I wish this struggle on anyone of course. I feel very much stuck in the same vicious cycle and like nothing works. I'll be sure to look into those nerves systems you said about. I'll be honest I have never heard of any of em and my nerves do feel quite upset. I will also try finding that pinned advice and look into chemicals. Me and my other half recently changed our eating habbits to lose weight which so far has gone well :D. It does help having people here that I can talk to and vent to. I love my boyfriend but he doesn't...fully get it so he said talk to someone who does rather than doctors who just want to fling painkillers at you. Thanks so much!
 

Jemima

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DX FIBRO
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11/2019
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Aww, I know I probably overwhelmed you with info there, but I hope some of it is helpful! Everyone here in the forum is so supportive and friendly; I hope you'll stick around and find exactly what you're looking for!
 

MissValkie

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Sep 28, 2021
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I am grateful for the info I looked on a couple of other posts. One that you replied to about opioids which shed some light on things. As well as that...LDN? I will be looking at the list of vitamins and the other bits you shared. It's nice to be a part of this where people understand the struggles and have great tips :) I'm hoping that this will help me get better or at least manageable <3
 

Jemima

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DX FIBRO
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Great! Yep - I seem to regurgitate the info I have in my brain pretty randomly. So many people here have fantastic tips and insights, so reading through the threads is like finding a gold mine! I am also really curious about LDN but haven't had a chance to chase it yet. I wish you every luck in getting your fibro to behave :)
 

MissValkie

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Thank you very much I will do my best to get it in line. I'm also curious about LDN and wonder if it will do any good for me too. I hope to maybe speak to many of you in time not just for help but just get to know folks :)
 

SONIA63

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Dec 6, 2020
Messages
2
Reason
DX FIBRO
Diagnosis
06/2000
Country
AU
State
WA
Hi, I'm pretty new at posting, and have been reading a lot of post on this forum and it has helped me. I had fibro for years it's and I've managed ok. I also have osteoarthritis in most of my joints and nearly all of my spine. the past few years fibros become a daily battle. I'm on anti depressant and a few other meds including LDN the LDN hasn't helped much with the pain but has helped with the restless legs. All my limbs still tingle and am fatigued all the time and of course the pain even fingernails hurt.
 

Gardener

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Joined
Jul 14, 2021
Messages
19
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
SONIA63- try adjusting the LDN dosage. I first started w/4.5mg which decreased all my symptoms but not enough. My doctor increased to two pills total 9mg of LDN and that knocked it out for good. I literally feel like I was given a new body. I have felt good everyday since then. Never had a flare! Hope this helps
 

MissValkie

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Sep 28, 2021
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Anti depressants heavily disagree with me sadly so I can't take them. But I've never tried LDN. Also doesn't help that my work place is heavily stressful right now. How did you get onto this LDN? : o
 

Spring 2021

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Joined
Apr 7, 2021
Messages
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Reason
DX FIBRO
Diagnosis
01/1996
Country
US
State
OR
I went to a counselor for pain. He told me our brains over react with pain. We stay in a flight and fight mode. I have to remind myself I will be OK and it’s just pain. And this was after I quit work and went off pain meds. That doesn’t always work but it helps. I found that when I sit or move in a redundant position is what kills my neck and shoulders from working. I requested ergonomic consultation for my work when I was employed, which helped but the stress in my work was too much so I went on SSD. My pain is not as bad but took me 3 years to feel better after going off pain pills. Worse nightmare ever but my stomach couldn’t handle opiates anymore. I’m not suggesting that for you, just giving you my story. Now what bothers me more is Chronic fatigue! If I take a pain pill once in a while I have no fatigue. Fibro sucks!
 

MissValkie

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SSD? I appreciate you sharing your story to be honest, makes me feel less alone in this. My stomach doesn't like most strong painkillers that used to help a bit with pain. I've seen about constant fight or flight which I am understanding more bit by bit. I've also started taking vitamins and such which...isn't like a huge difference but gives a little more energy. Fibro sucks indeed! I guess I'm just trying to cope however I can...I was told this could write me off work eventually so I guess I am doing what I can whilst I can.
 

sunkacola

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I went to a counselor for pain. He told me our brains over react with pain. We stay in a flight and fight mode. I have to remind myself I will be OK and it’s just pain. And this was after I quit work and went off pain meds. That doesn’t always work but it helps. I found that when I sit or move in a redundant position is what kills my neck and shoulders from working. I requested ergonomic consultation for my work when I was employed, which helped but the stress in my work was too much so I went on SSD. My pain is not as bad but took me 3 years to feel better after going off pain pills. Worse nightmare ever but my stomach couldn’t handle opiates anymore. I’m not suggesting that for you, just giving you my story. Now what bothers me more is Chronic fatigue! If I take a pain pill once in a while I have no fatigue. Fibro sucks!
Hi Spring....It is true that how we react to the pain mentally and emotionally is a big key to managing it. As Jemima has said, it's important to remember that it is pain, just pain only, not actually a threat to our lives at this moment. If we react to pain with emotions like worry, fear, outrage, self-pity, anger, and so on, we will only increase out stress level which in turn will increase the pain.

If, on the other hand, we do our best to treat our condition with a healthy diet and healthy exercise, and keep reminding ourselves that this is not a threat, use relaxation techniques if needed in order to remain calm and on the level, we will decrease the effect the pain has on our lives.

GOOD FOR YOU for going off the meds. That's the best thing you could have done for yourself. I did that as well, and now manage it all in other ways and only take pain medicine on occasion; usually using medical cannabis and CBD.
 

Gardener

Member
Joined
Jul 14, 2021
Messages
19
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
Anti depressants heavily disagree with me sadly so I can't take them. But I've never tried LDN. Also doesn't help that my work place is heavily stressful right now. How did you get onto this LDN?
 
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