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KayH

New member
Joined
Sep 30, 2021
Messages
2
New here, just saying hello.. had fibro for years but not diagnosed til recently. In the middle of a flare up.. gabapentin, tylenol and lidocaine patches barely help but all i have currently.. welcome all suggestions!
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi Kay,

Sorry to hear you're having a hard time.

We talk a lot here about symptom management through lifestyle, and it's made a massive difference for me - in combination with a cluster of supplements. I'm a different person! Go check out Sunkacola's pinned post at the top of the general discussion section of the forum. There, she outlines a really good fibro management strategy.

I didn't have any luck with medications, but have found certain supplements help a lot. I take CoQ10 and ALA for fog, Acetyl L-carnitine for energy, boswellia for pain and inflammation, and magnesium glycinate for the whole show! Other people have had luck with different things - we all have to be our own guinea pigs and try things until we find what works! I recommend reading through some of the threads here in the forum to see what everyone else is up to.

The other thing is suggest is making a notation diary for a couple of weeks to try to see if you can find any triggers that you're not currently aware of. Note down when your symptoms change,
what you feel mentally and physically, and look for patterns in relation to what you're doing/eating/experiencing/exposed to. That can help a lot!

I hope you find the support and answers you're looking for here 🌻
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi there and welcome. I hope you can find good answers and support here. I'd like to recommend this post, as it has many suggestions for things you can do for yourself that may very well help you enough to be able to stop taking addictive medication. Many things have have worked for me and for others. I wish you the best.....

 

KayH

New member
Joined
Sep 30, 2021
Messages
2
Thanks to both replies... my flare is finally on the down side.. this the 2nd severe one in the last 3 months, dont usually get them this close together but under a lot of stress currently.. i am facing open heart surgery prob within next couple of months (waiting on appt for a second opinion).. i am seriously concerned about the surgery causing another severe flare up which would just mean more pain on top of pain! I have had afib for many years now and every procedure they have done so far has resulted in a bad flare up lasting st least 2 to 3 weeks..
I eat a healthy diet, cut out almost ALL sugar + carbs, lost 20 lbs (working on more) but none of these have helped with th FM pain... adding more supplements slowly..
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Thanks to both replies... my flare is finally on the down side.. this the 2nd severe one in the last 3 months, dont usually get them this close together but under a lot of stress currently.. i am facing open heart surgery prob within next couple of months (waiting on appt for a second opinion).. i am seriously concerned about the surgery causing another severe flare up which would just mean more pain on top of pain! I have had afib for many years now and every procedure they have done so far has resulted in a bad flare up lasting st least 2 to 3 weeks..
I eat a healthy diet, cut out almost ALL sugar + carbs, lost 20 lbs (working on more) but none of these have helped with the FM pain... adding more supplements slowly..

Hi Kay,

Wow, it sounds like you're going through a lot right now, and have achieved so much in terms of self care - give yourself credit for that, even if you're not feeling much benefit yet! I can totally understand your worry in anticipation that the surgery could trigger you. I think the only advice I can give - what I'd try to do if I were in your shoes - is to do all the "right" things (as you are already!) and then focus on being as self compassionate as possible, with the aim of keeping that stress as low as you can. For me, keeping my stress response to pain down (and its capacity to keep re-triggering that pain!) was all about acceptance. I know that the pain and recovery from your surgery is going to be a totally different ball game, but for the fibro side at least, perhaps these ideas might help a little. I wrote this to someone else a while back:
I was stuck in a vicious cycle of being afraid of my body, and having a really massive stress response whenever my symptoms either flared up, or did something I couldn't figure out, which in turn triggered my fibro. A therapist helped me make a massive breakthrough by introducing me to the idea of "radical acceptance". Emphasis on the radical!

He got me to sit with my pain, tuning into my body, and to try to accept that each feeling is just there, but that it can't hurt me. As awful as we might feel, that pain is just a sensation - it can't damage us in any way - and it will recede again. When we have a good day, we can try to just live in the moment, and enjoy it as much as we're able. The more we accept how we feel, the less likely we are to trigger ourselves more by dumping stress hormones into our systems.
Best of luck to you through it all, Kay. Please do let us know how you get on, and come chat/vent whenever you feel like it!
 
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