Hi from Norway

tormodg

Member
Joined
Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
Hi everyone.

I am a man from Oslo, Norway. I have suffered from asthma and sleep disorders all my life.

Yet I managed to stay fairly active. In 2010, at the age of 40, I completed a 540 kilometers (335 miles) long ultra cycling race.

Long story short:
  • In 2012 I had so much pain in my pelvic area that I was forced off the bicycle. Work became difficult.

  • In 2015 was diagnosed with Interstitial Cystitis (aka Bladder Pain Syndrome). I was on partial sick leave for about 5 years

  • In 2018 I had a radical cystectomy where they removed my bladder and created a new one from 54 centimeters of ileal gut.

  • In 2021 I was diagnosed with GERD.

  • In March, 2022, I was diagnosed with Fibromyalgia.

  • I am waiting for the results of a psych evaluation and expect to get a diagnosis of ME/CFS.
My life has turned upside down in a few months. I was working full time until recently. But I had more and more days where my brain did not function due to brain fog. I started not paying attention to what people were telling me in Teams meetings. I was unable to start doing even basic tasks at works. I could not get out of bed in the morning. I struggle with walking more than half a mile without feeling extremely exhausted. Walking uphill is extremely tiring. Even when I just sit on the coach, my arms and legs feel extremely heavy and I feel completely drained of energy. My shoulders feel very heavy, I struggle to keep my head upright at times.

I am not tied to my bed. I try to avoid lying there more than necessary. I sit around the house, and I also manage to go outside now and then.

My hobbies are reading, exercise and playing classical guitar. I can't do any of them now. I do however listen to a lot of music.

I don't have as much pain as other fibro patients (my mother also has fibro and has had pain treatments for 30 years now). But I do have constant pain in my lower back and front thighs. My knees often feel either very stiff or very wobbly. My neck is often stiff and painful. I get pain in my jaw joint. I have some pressure points which flare up often. My hands and arms shake. I struggle to find words. Just typing this takes a lot of effort and a lot of fixing typos.

I work as a Chief Marketing Officer for a small company (42 employees) in Norway. It is a dream job. They let me work from home as much as I want. Now I am completely unable to work. I can't write, I can't read for lack of comprehension, I can't plan ahead, I can't facilitate workshops and training sessions which I love to do. My boss is sympathetic and my colleagues are very understanding. I have been very open with them about my health issues.

My family is very supportive. I am married to a wonderful woman and we have two fantastic daughters (age 18 and 21) who both live at home for now (the oldest is a university student but the pandemic forced her to abandon the student housing).

I am now on 100% sick leave. My doctor is going to help me apply for a disability pension.

I feel so confused and tired. It's like I was hit by a freight train and woke up to a new reality. And I feel lost in this new world.
 

Auriel

Very helpful member
Forum Supporter
Joined
Jun 8, 2021
Messages
853
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Hi @tormodg , wow you’ve really been through the wars! I’ve never known anyone to have had their entire bladder removed and reconstructed before! yes fibromyalgia is life changing and it can take years sometimes to accept how different our life has become through it, I like music too (I think I might like music more than tv?) I still like to read but I’m more for e books and audiobooks these days (and fatigue means I can’t get to read/listen in one go) I like instruments too (mainly piano but I don’t have one right now) the pain of fibro means things like playing them gets effected, I’m a bit of a metalhead (all different types) I like classical too, although I remember aha from the eighties (when I was little) I can’t say I was a fan as such? (even though somehow I know the lyrics to their songs😆) I’ve gotten really into Morton Harket right now, I like how he’s evolved as a singer and the lyrics to some of his songs are really beautiful and touching (so its kind of a guilty pleasure but that’s a secret ; ) I saw Norway once on tv and it looked beautiful (I like how Norwegians speak, they have a cute little bounce in their accent I like that ) I hope we can be some kind of support even if it’s just a connectivity, acknowledgement or understanding 👌🏻 🇬🇧 👋🏼 🇳🇴 😊
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi tormodg and welcome in! 👋:
Such an ordeal, but good to hear what a great environment you are in. Also you haven't mentioned trying treatment yet and will know your mother's pain treatment, but we're all so different and there is lots of help in store.
So you're not at the end of you're old road, it's just taking a surprising twist which will be a challenge in a new way of finding a new life which can integrate big bits of your previous life & bring a new quality. You sound as if you've mastered so many challenges in your life and I don't think you've met your match, especially once you find how to get your mind power back!
Have you seen sunkacola's ▶️ Big Advice Post at the top of the General Forum - how's that in comparison to what you already know about FM- & ME/CFS-treatment?
 

Auriel

Very helpful member
Forum Supporter
Joined
Jun 8, 2021
Messages
853
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
What music do you you like @tormodg? (I can ask about things other than fibro, one of the moderators said when I joined) I’ll put a donation in next week to make up for my non fibro questions 😁
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
216
Hi tormodg and welcome. I'm sorry to hear about your struggle, it can feel overwhelming dealing with Fibromyalgia but you will find sure support here. You've fought hard to keep going and will hopefully get the support you need from your doctor. It's painful having to stop playing an instrument, I used to play guitar and the drums. My best friend still plays bass in a local band. Atb
 

tormodg

Member
Joined
Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
Thank you all for the kind answers. I have had a couple of very rough days. I’ll answer some of the questions in a few days when I feel better.
 

tormodg

Member
Joined
Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
I’ve gotten really into Morton Harket right now, I like how he’s evolved as a singer and the lyrics to some of his songs are really beautiful and touching (so its kind of a guilty pleasure but that’s a secret ; )

I once played in a Jazz Band and at one gig back in around 1998 or so we were booked for the night. The opening act was...Morten Harket. We didn't get to play together with him but it was really nice getting to see it. My wife and I also saw the A-ha Unplugged tour a few years ago. It was a lovely night. And here in Norway, everyone knows all their songs so it was quite a "sing-a-long" night. :)

I saw Norway once on tv and it looked beautiful (I like how Norwegians speak, they have a cute little bounce in their accent I like that ) I hope we can be some kind of support even if it’s just a connectivity, acknowledgement or understanding 👌🏻 🇬🇧 👋🏼 🇳🇴 😊

Thank you @Auriel.
 

tormodg

Member
Joined
Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
What music do you you like @tormodg? (I can ask about things other than fibro, one of the moderators said when I joined) I’ll put a donation in next week to make up for my non fibro questions 😁

I like a lot of music. I can listen to classical, modern jazz, pop, rock, ambient, electronica. I'm a big fan of Röyksopp (another Norwegian group with international fame). I tend to mention bands that were big in the 80s (or before) like U2, Pink Floyd, Genesis, The Police, Peter Gabriel, Sting. But I can listen to a lot of stuff. :)
 

tormodg

Member
Joined
Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
Hi tormodg and welcome in! 👋:
Such an ordeal, but good to hear what a great environment you are in. Also you haven't mentioned trying treatment yet and will know your mother's pain treatment, but we're all so different and there is lots of help in store.

I have not had much treatment yet, so far it's mostly been all about figuring things out. It has taken many years to get to this point.

I am now titrating Cipralex in order to start Sarotex in a couple of weeks.

I am in the process of applying for disability benefits and it's a looooong and winding process.

So you're not at the end of you're old road, it's just taking a surprising twist which will be a challenge in a new way of finding a new life which can integrate big bits of your previous life & bring a new quality. You sound as if you've mastered so many challenges in your life and I don't think you've met your match, especially once you find how to get your mind power back!

Thank you for the kind words. I am so used to fixing things myself. This time it feels as if everything has come to a halt. But my psychologist is wonderful. She helps me through this time of transtion from my "old life" to my "new life". Right now I'm very much in an "in-between state" and it's confusing and troubling. But life goes on. And I thank all the powers that be for living in a country with a good health care system.

Have you seen sunkacola's ▶️ Big Advice Post at the top of the General Forum - how's that in comparison to what you already know about FM- & ME/CFS-treatment?

I have seen it and re-read it several times. Very helpful post.
 

tormodg

Member
Joined
Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
Hi tormodg and welcome. I'm sorry to hear about your struggle, it can feel overwhelming dealing with Fibromyalgia but you will find sure support here. You've fought hard to keep going and will hopefully get the support you need from your doctor. It's painful having to stop playing an instrument, I used to play guitar and the drums. My best friend still plays bass in a local band. Atb

Thanks @Badger. Things are slowly moving forward. I just talked to my doctor who is working on the application for disability benefits.

I have had a few requests this past year to play in bands with people. I have tried but I can't keep it up anymore. At first I didn't understand why...but now it makes so much more sense. Brainfog, pain and extreme fatigue do make life harder.
 

Auriel

Very helpful member
Forum Supporter
Joined
Jun 8, 2021
Messages
853
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Cool! I like Peter Gabriel too! I found out recently Norwegians invented the cheese plane I think the nearest we’ve got to that in Britain is the other side of a cheese grater : ) I love to learn new things about different countries, also glad that your feeling much better now
👍🏻🇳🇴⭐
 
Last edited:

Sabina

Active member
Joined
Aug 6, 2020
Messages
40
Reason
DX FIBRO
Diagnosis
09/2010
Country
US
State
IL
Hang in there tormodg. The best thing I did for myself when I got hit with the Epstein Barr virus & Fibromyalgia was get myself to the library and read as many books on those disorders and alternative health & healing as I could. Even though there aren't cures for these issues, there is so much we can do for ourselves to manage our symptoms and our lives. Be sure to include a holistic "mind-body" approach to healing as that will give you much more insight. And if you cannot get to the library, download some books on Kindle or read up online articles.

All the best to you. And remember, we are all in this together.

Sabina

 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,319
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Hello @tormodg , your post that included the video will not be seen on the forum.

Please read the Forum Rules so that you understand what is and is not OK to post.

Any post with an outside link is very unlikely to appear, as we carefully monitor posts and rarely allow an outside link to be posted.
Thanks.
 

tormodg

Member
Joined
Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
No, it was a very interesting link to a new video from Open Medicine Foundation discussing an innovative method to distinguish between ME/CFS and Fibromyalgia in order to provide better and more correct care.

@sunkacola I did read the rules and it said «do not post frivolous YouTube videos» and I explained in my post why I posted this one - and it was posted in the «research» category because it is fresh and important research.

You could have sent this message as a PM. Hanging me out to dry in this thread is not nice.

For the interested it is on the Open Medicine Foundation (OMF) youtube channel.

I could have contributed with interesting content here as I watch a lot of relevant science research. I’ll take it elsewhere.
 
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