A good vent

Jay087

New member
Joined
Aug 22, 2021
Messages
4
Hi all, I have just joined and feeling just like I need to vent and someone to say it’s not you, fibro sucks 😊. I was a Police officer for 10 years then developed PTSD. I found running my escape and it helped me through everything. I was running half marathons, running with my kids and it was looking up, I was training for my first marathon… Too hard thou apparently. Then it turned in to patella tendinitis in my knee which sidelined me for three months. Then my old injuries I had ever had, stress fracture in foot, elbow strain, sore knees all come back hurting at once. Not for a day it was like this way for six months. I felt crazy like it must be in my head. The GP said it was in my head but tried me on Lyrica which my body hated. After more months I went to a rheumatologist who said straight away 100% Fibro let’s start meds. Tried four different anti depressants, more lyrica and others. Everything makes me feel tired, fatigued and just plain off. Even little doses of Endep make me feel groggy and off.

Now the specialist says Fibro has made me sensitive to medications and maybe I shouldn’t try any of them. So after 18 months of drugs, acupuncture, massages, natrapaths I am cutting off everything and just going to see what my body is telling me. I haven’t worked in 18 months and to be honest getting mighty sick of it all. I can get a few good hours out of a day but the rest is just sore and uncomfortable for my knees and feet. My wife asks what’s it like I say you know that feeling you have at the end of day when you just want to get off your feet and so tired, that’s what I feel like all the time… it’s getting a bit old but hey as I tell my kids one day at a time and the next day I may wake and it’s just gone😁😁😁 wishful thinking. Thanks for letting me vent. If you have any advise or tips I’m all ears. Thanks fellow fibro fighters
 
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I think most of us here can identify with the things you've mentioned above. Be it exercise, the meds or the end of the day feeling.. we've all had those at some point or the other. I'm glad you've found here.. we can all suffer together!
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I have just joined and feeling just like I need to vent and someone to say it’s not you, fibro sucks 😊

Hi Jay,

Glad you're here! You're damn skippy it's not you - and fibro truly does suck!

I can relate a fair bit to your story. I was also a sporty high-achiever type who went through a series of traumas, and came out the other side with... fibromyalgia! It can be so hard when so much of what we attached our identity to becomes off limits. The fact that you're rolling with humour and positivity in the way that you are is a massive credit to your strength. That said, I get that you must be insanely fed up after so many hurdles.

I'm also in the same camp on medications - all the different things my doctor put me on over the years just made me really sick, so that was out of the window for me too. Through quite a lot of experimentation, I've found a gaggle of supplements that are really helping me. It took quite a bit of questing, but perhaps you'll be able to find useful tools too. Have you already been a way down that road?

I think your notion of going back to the drawing board to tune into your body is a really great one. The better you can be at reading how your body reacts to different things, the better positioned you will be to assess treatments/lifestyle changes that you introduce down the road. I thought I knew my body - and my mind - really well, but when someone directed me through self observation, I realised I was missing a lot of cues. I really recommend keeping a notation-style diary, tracking pain, fog, and mood over the course of each day, while also looking for both good and bad triggers, and monitoring activity and stress (no matter how small!). Only doing this for a week or two can give some big clues.

You mentioned the thought of waking up and your fibro being gone. While optimism is a really valuable thing, going through the process of accepting the reality of fibromyalgia's presence in our lives can be a really important part of getting a handle on it. When we are emotionally resisting it all the time, we hold ourselves in a stress state that will only exacerbate symptoms. I worked with an ace psychologist who got me to practice "radical acceptance". He got me to recognise that while fibro symptoms are unpleasant, they aren't a threat - they won't hurt us, and every flare will pass. The powerful optimism comes back in through finding ways to manage the condition, rather than wishing it away.

Perhaps have a look at Sunkacola's great post on managing fibromyalgia, which is pinned to the top of the General Discussion section of the forum. There are also all manner of threads to be found that go into what people have found helpful. If you want to ask any questions, or vent some more, we're all here!

Finally, you mentioned the thought that you were training too hard for your marathon. You probably weren't - your injury probably happened because your fibro was gradually ramping up in the background, rather than the other way around. Don't blame yourself in this equation! Fibro is totally unfair, but it's also indiscriminate. It sucks, but it doesn't reflect who you are - and it's not always going to define you as much as it is right now. Good luck 🚀
 

Jay087

New member
Joined
Aug 22, 2021
Messages
4
Thanks for your insights good to know there’s others in the same boat. What I really don’t get is that feeling I my head that is between a cold/fatigue/heavy feeling that won’t go away. I’ve just done a month with no medications and that was a horrible idea I am far worse of now than before. I’m trying to go back on them but my head and body is just in pain and I can think clearly now for two weeks. It’s wearing very thin to be honest.

in regards to supplements I’ve tried magnesium, zinc, vitamins d and b, men’s health the list goes on. Nothing makes it bearable. I think I need a new rheumatologist as my current one will only try endep, duluxotine and lyrica. His suggestion is to change the doses every time to keep from the fatigue drugged feeling settling in. That does not work either. Just feel like the little engine is running out of steam.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Thanks for your insights good to know there’s others in the same boat. What I really don’t get is that feeling I my head that is between a cold/fatigue/heavy feeling that won’t go away. I’ve just done a month with no medications and that was a horrible idea I am far worse of now than before. I’m trying to go back on them but my head and body is just in pain and I can think clearly now for two weeks. It’s wearing very thin to be honest.

in regards to supplements I’ve tried magnesium, zinc, vitamins d and b, men’s health the list goes on. Nothing makes it bearable. I think I need a new rheumatologist as my current one will only try endep, duluxotine and lyrica. His suggestion is to change the doses every time to keep from the fatigue drugged feeling settling in. That does not work either. Just feel like the little engine is running out of steam.
Ah, the dreaded fibro fog and fatigue one-two punch! It can wind up feeling like we're endlessly wading through treacle sometimes.

For this specifically, I found that supplementing for mitochondrial support really helped me to clear the fog - at least in part. I take CoQ10, Alpha Lipoic Acid, and Acetyl L Carnatine daily to improve my energy and brain function. Boswellia seems to help me a bit with physical pain and discomfort. Some people find GABA very useful too.

Managing stress and getting enough sleep are also really crucial - don't underestimate the impact of self-care! It might seem insignificant, but the way our daily routine settles and how we manage our mental health can make all the difference to the severity of our symptoms.

Do be careful with Duloxetine, because many people have a really hard time with withdrawal if it doesn't suit them. It made me incredibly ill - but we are all different. Many of us here advocate for trying to find ways to self-manage without medication, purely because the side effects of these kinds of drugs can be pretty hardcore - but this is a really personal choice, and some people do find success with meds. There have been a lot of discussions on here recently about Low-Dose Naltrexone (LDN), which I haven't tried yet, but it does sound intriguing. That could be something to pitch to your rheumatologist if you're hunting for new ideas.
 

Jay087

New member
Joined
Aug 22, 2021
Messages
4
I’ve always heard of Fibro fog and flare ups but I’ve bad for about 18 months and my “normal day” is pain and headache/fibro fog with no relief. I have now ordered all the supplements you have suggested and emailed my rheumatologist 😀.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I’ve always heard of Fibro fog and flare ups but I’ve bad for about 18 months and my “normal day” is pain and headache/fibro fog with no relief. I have now ordered all the supplements you have suggested and emailed my rheumatologist 😀.
For my own experience, flares can last for only a day, or literally for months! My first year or so with fibro was literally maximum symptoms all the time - so you're not alone in that. Now that I have some pretty good self-management strategies going on, my symptoms are usually a fraction of what they were (maybe 20-40%), with just occasional flares - the last time it got really bad was at Christmas (of course!), and that lasted about 6 weeks. Obviously, Christmas is a long time ago now, so I guess I'd advise that there is good reason to be optimistic :) Quite a lot of sufferers here in the forum seem to have got themselves up to a much better level, so focus on believing that it's possible - just got to track down the right puzzle pieces and slot them together!
 
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