tormodg
Member
- Joined
- Apr 5, 2022
- Messages
- 23
- 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:
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.
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.
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.