Part 1 Fibromyalgia and ADHD my story

Fibromyalgia also called fibromyalgia syndrome

= Muscle Fiber Pain (FMS)

I wrote this post in 2019 on my old blog.

On good days it tingles and reminds me that I have skin, on bad days it burns like nettles. This pain feels like a really bad case of muscle ache, which unfortunately is also in full swing when I'm resting. The burning pain goes deeper under the skin and wafts from the fingers to the tips of the toes and is interrupted by severe joint pain. The forearms and shins feel as if someone has hit them.

These are my feelings. Everyone experiences their pain differently and it doesn't always appear in the same way; fibromyalgia doesn't follow the textbook approach.

You could say that it hit me pretty well.

Other fibromyalgia patients choose to use a wheelchair because they can no longer hold themselves upright without pain.

FMS will accompany me throughout my life.

This chronic pain disorder affects women significantly more often than men. The first symptoms often appear after the age of 35, but it can also affect children. Many suffer from the same pain as I described above.

And as if that wasn't enough, there are also sleeping problems and concentration problems - in my case, these problems appeared long before the pain. Unfortunately, depressive episodes are also common, usually as a result of loneliness because one isolates oneself from the outside world.

Not everyone understands an illness that you can't see. Not everyone has the patience to keep hearing that you're not feeling well. And who wants to constantly complain about their pain? So in the end, everyone is left with this game of putting on a brave face and so on... or you hole yourself up at home and don't have to answer to anyone.

The so-called fibro fog bothers me more than the pain. The feeling of not being able to control anything anymore because your mind literally shuts down and you think you're going to get demented drags you into a deep hole. That's about the depressive episodes.

I think the best way to compare the fibro fog is to have a cold, just without a runny nose and sore throat. But with aching limbs, which are always there. When I notice that the world is slipping away from me, I prefer to stay at home where I feel safe. I can't predict when this will happen like I can't predict when I can expect the pain attacks after a walk.

Unfortunately, research has not yet been able to find a concrete cause. The range of possible causes of the pain extends from genetic predisposition to psychological factors.

Fibromyalgia is an exclusion disease, which means that inflammation (eg rheumatism - as the joint pain is very similar to that), neurological and organ damage can be excluded. However, it is so serious that it is known to all doctors (who continue to educate themselves and listen to their patients), health insurance companies and insurers - and of course you are excluded from various services.

Roughly speaking, pain perception and pain processing are impaired in people with fibromyalgia. While you could previously climb three flights of stairs without any problems, five steps now feel like you have run a marathon.

In very severe cases, medication is also used as therapy.

Exercise is recommended by everyone and I can confirm that swimming is particularly good for me. While I have to recover after a 30-minute walk and my legs hurt afterwards, after 30 minutes of swimming laps (with a few breaks) I feel very light and energized and have a window of up to 3 hours in which I feel fit and strong. However, if I overdo it during this time, I am quickly reminded by a strong bout of pain that I am not healthy.

Everyone has to find out for themselves which movements are good for them. I envy everyone who can go to yoga. I miss the nice after-yoga feeling. Artistic activities that distract the mind and require flowing movements such as painting and playing musical instruments are also recommended and at least painting (I'm very unmusical) is also very good for me.

A conversation with a psychologist or psychotherapist can take the pressure off your mind and help you cope better with everyday life through behavioral training. Since my appointment here is still pending, I can't say much about that yet.

Note November 2024: I can now do yoga and light strength training again. In the last few years I have become very familiar with my pain and know exactly when I can do how much and what. Instead of fighting it, I have accepted my situation and learned from it.

Even after weeks, I am much stiffer in yoga and Pilates classes than many older people, but I have also learned to accept that I am sick and cannot/should not compare myself.

But it feels incredibly good to be able to take part in active life again.

Part 2: My path to the diagnosis of fibromyalgia

Part 3: Doctors' Marathon and Diagnosis

Part 4: then ADHD too