Recently diagnosed.

Mystory

New member
Joined
Apr 8, 2021
Messages
1
Reason
DX FIBRO
Diagnosis
03/2021
Country
UK
Hi everyone,

I have just recently turned 29 and 3 days before my birthday I received my official diagnosis of Fibromyalgia. At first I was relieved I finally heard someone tell me I wasn't going crazy, that this pain, constant confusion and fatigue wasn't all in my head. Then after a week I realized this is for life. The last 4 years I have spent going back and fore the doctors isn't going to give me a magical pill that will end all of the above and that was what I was hoping for with my diagnosis.

I apologise in advance if this post is very negative but I lost both my grandfathers at the beginning of the year, my business crumbled and now my health feels something I'm now losing as well. This has hit me like a tonne of bricks. I am not coping very well and literally feel like I have no one to talk to as I don't know how to describe this to any one who doesn't understand and feel like my brain just shuts off when I am trying to speak to people or even think, I am forgetful, clumsy and the more nervous I get the more the words become muddled. I can not think straight these days and feel like I am so alone. This is my first step to admitting this as I am usually so independent and the kind of person 'who just gets on with it' but I am exhausted, physically and mentally :(

Today is the start of my pain management, I have been prescribed with Duloxetine and Tramadol which I have read that in the first 4 weeks can make you very low and truth be told I am scared to feel any lower than I currently am. I wondered if anyone has any advice on what combinations worked for them pain management wise, to help clear the brain fog, the insomnia and the attitude problem I seem to be developing. I do not want to let this define me but I am drowning.

Thank you in advance x
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,341
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Mystory,
First, you are not completely alone. We are not geographically where you are, but we do understand much of what you have gone through and are still going through, because we have had the same experiences. We are here to support one another and give advice where we can.

Personally, I can relate greatly to what you are saying about not wanting it to defeat you but you are barely holding your head above water. I felt like that exactly. What ended up helping me the most was a combination of many things that I implemented over time. I have put all of that into a post pinned at the top of the General forum. Don't feel like you have to do it all at once, and of course not everything there will even be helpful to you, but it is my wish that at least something there will. You sound to me like a survivor - someone who will do what you can if you only know what to do.

It seems impossible to take any kind of charge of this thing when you are drowning and feeling despair. but it's possible to start to try one small thing. And to keep doing it and see if it helps at all. I felt as if I couldn't do anything to manage the pain myself. But when I got started with one thing, I found I could actually do that.....and that led to the next one...... and so on.

I am not pain free. Today, for instance, I am having a bad pain day. And I never have a day without knowing I have FM. But the degree to which it negatively impacts my life is much less than it was years ago when I first started trying to do things to help myself. It doesn't make it all go away but being more able to manage it physically and mentally is a huge improvement.

Please beware that tramadol nd other opiate medication is very addictive. If you take it regularly you may find yourself in worse trouble because of that, so I just suggest being careful.

There is no shame is not coping well when you don't know what to do and feel alone. I hope that you will find some help and support here that will make managing FM a little more possible and easy for you. We are all here to help each other.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
491
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I wondered if anyone has any advice on what combinations worked for them pain management wise, to help clear the brain fog, the insomnia and the attitude problem I seem to be developing.
Hi Mystory - love the pun. ;-)

Quite a few fibromites try meds and it seems to help some more than the side effects that come with them. Studies show a certain amount of help from them, but always pretty limited, esp. opioids. Which is why opioids are now being stopped in the UK by the NHS for people who are not on them yet.
Meds didn't help me at all, most harmed, altho I did use amitriptyline (a bit similar to duloxetine) for 4 months in the hope it cd help at least my sleep, until the 8 side effects got overbearing, and felt much the better for weaning it off. No supps and almost no herbs helped. The ones that do help sleep, like CBD oil and melatonin, "help" "too much", make me numb and drowsy all day, like ami did too. I haven't quite finished with them yet, but trying if my cardiovascular meds are causing sleepiness, then ashwagandha and GABA, and again even more sleep "discipline".

Pain management for me tho means analyzing triggers, using diaries for every area, careful pacing and self-care, developing self-love further, if necessary using CBT. It is a new way of life, needs a lot of adapting and adjusting, if possible support, like from here.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
176
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I am in Texas and here doctors no longer prescribed tramadol for fibro. I had a back injury last year on top of my fibro and could hardly get pain pills for that ... it was truly awful. But the reason is that with chronic pain you end up just developing a tolerance for opioids and need more and more and then you are addicted and it's a vicious loop. In the past I did have doctors give me tramadol for the fibro but it was something I would have on hand for extremely bad days instead of something I took regularly and I liked that option but now they won't do that, either, even though I would rarely actually take anything.

I did take Duloxetine for maybe 4 months but I have really bad reactions to antidepressants and they tend to make me feel apathetic and just wish I was dead which obviously isn't great so I had to stop taking it. It did help with the pain initially but I found it was not worth it and I would rather feeling something, even pain, than feel so depressed that I was nearly suicidal. I don't think my reaction is common but it's important to pay attention to these emotional symptoms which on such medication.

I would recommend you do some reading, I would recommend "The Auto-Immune Fix" and/or "The Fibro Fix" to start. Both of these offer long term solutions for chronic pain management which surprisingly start with gut health. I have been working with these principles of improving gut health to heal auto-immune and right now I am not on any medication for pain management and feel better than I have in a long time. The weird thing is that I honestly never though I had gut issues but as I work to fix them I realize I do and it's a wonder that I was unaware. I am taking lots of supplements and bio-identical hormones but my doctor won't even allow NSAIDS because they destroy the gut micro-biome and so if I have a very bad day I might take curcumin or boswellia extract or acetaminophen but those are rare. It's not a quick fix but I think in the long run it's a better option than ongoing meds. I have also been in physical therapy since last August and that has also helped me with a lot of my pain issues as well, albeit slowly through daily PT exercises. I see her now every other week and continue my exercises at home daily. Not only are the exercises helpful but she also does a technique called dry-needling (similar to acupuncture) which works incredibly well for me personally.
 

Flexecif

Active member
Joined
Sep 1, 2017
Messages
92
Reason
Diagnosis
00/0000
Country
CA
State
Canada
Hi there. They already said everything I want to say. Just stay positive and always look forward to better days. Also, it could also be helpful that you have an affirmation that when you feel down, you just tell it to yourself to motivate you to remain positive. Always look at the brighter side and know that we are here for you, we're here for each other.
 

humordopey

Member
Joined
Nov 23, 2020
Messages
18
Reason
Undiagnosed
Diagnosis
01/2019
Country
US
State
CA
We are given our circumstances because we are the ones who can handle the situation. Never forget how stt\rong you have been, how strong you are, and you just know that you can make it.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,341
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
We are given our circumstances because we are the ones who can handle the situation. Never forget how stt\rong you have been, how strong you are, and you just know that you can make it.
This is one way of looking at it, and I say - if seeing it this way helps you, go for it! Anything that makes it better and doesn't harm you or others is a good thing. :)

I prefer to see it a different way - that the universe is not personal, and the operating of the universe is not personal. As I see it, things happen, and they happen to this person and not to that person, -- this person left the day before the tidal wave hit and killed everyone, and that person was there and died. But the universe doesn't operate on a merit system. When I see things this way it is very helpful to me, because it reminds me that everyone has problems and fibromyalgia is just something to deal with like everything else in life.

That works for me, but as I say...each of us needs to find their own way of looking at life, and since no one can know the secrets of the universe, all that really matters is whether your world view works for you or not.
 
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