Part 3 Doctors' Marathon and the Diagnosis

Doctors' Marathon and the Diagnosis

Thanks to my great friends and acquaintances on Facebook, I received good tips and doctor recommendations.

Thanks to competent doctors who also listened to me, I “only” had a small marathon of five doctor’s visits in five months.

After I had gained hope and received an appointment with an orthopedist within two months, the appointment was, of course, as sobering as expected.

At least I only had to wait two months, others had to be more patient. After countless calls to all the doctors I tried, I was lucky to find someone within a 50 kilometer radius of Frankfurt who was able to make an appointment fairly quickly (i.e. within two months).

I discovered that there are many, many doctors' offices that only accept private patients. When I managed to get someone on the phone, I immediately answered the phone and said that I had "public insurance."

So I went to the neurologist and rheumatologist. The neurologist sent me for an MRI.

However, she did determine beforehand that my cramping hands were caused by the fact that there was not enough space for the nerves in my elbows. If they were squeezed (when bending my arms, when supporting myself), then the line to my hands was cut. The recommendation was to take it easy and not to put my elbows and forearms down on anything until the next appointment, when the nerves in my head and arms would be measured to rule out organic damage.

I was surprised that no one had mentioned ultrasound or anything like that. But then I was told that the organs are functioning properly when the nerves transmit the information (very light electrical impulses) from the head to the fingers and toes without any problems.

So my next visit was to the rheumatologist, who only looked at me briefly and then sent me on to an internist/rheumatologist. The first doctor ruled out rheumatism because although I have pain in my joints, I don't have any other typical symptoms, such as swollen fingers and tenderness to pressure. The internal rheumatologist/internist can research a broader field.

The Pain Management Book says: Find out what you can be grateful for because of your illness.

In addition to the usual, that there is nothing worse, I added to the list that I have already learned a lot from all the appointments.

The internist therefore immediately diagnosed fibromyalgia, even though there were no organic causes.

So I finally had someone who said that word. But it still wasn't like a weight was lifted from my heart. I don't know what I expected. But I drove home and thought: Hmm.

I then read through it online and it said what I already knew and what the doctors had recommended up to this point. I had already implemented a lot of it and was still in the process of implementing it.

In the past few weeks I have also noticed how severe my attacks have become the more stressful the day has been. It was clear after my first visit to the doctor that I needed to avoid stress.

Now I had made the decision to give up my self-employment.

I hadn't done much anyway, but I was still obliged to pay this and that. When I deregistered my business, so many things suddenly became a thing of the past. It was a real relief for me.

It felt good. Then it felt like failure. I gave up. I left my husband to take care of the family alone.

As I said, I had already cut back a lot before. But that was it for now - it's over. The possibility that if maybe, maybe then - that is now over. The fact that I have been really, really lucky with my really understanding and caring husband and his two little ones, who are in no way inferior to him, is a great blessing.

In between I also had an MRI scan. It was only my head that was in there, but I really don't need that again. At least I have it in black and white that everything is fine with my head. And then finally the appointment for the nerve measurements, where of course everything was fine. That day I went home with the certainty that I have a chronic illness and now have to continue to take care of the treatment myself.

No Dr. House, no team of doctors who reserved a place for me in a health resort because we spent so much time together and became friends. I wouldn't recognize any of the doctors on the street.

But I am grateful to them that each and every one of them listened to me and that every single appointment takes me one step further. Once the diagnosis has been made, you no longer worry about what else could be wrong. Now you have time to find out what is good for you. And wait until you get a place in a pain center or a day clinic.

My next appointment is with a psychotherapist, with whom I hope to be able to break my terrible behavioral patterns and also get rid of the bad thoughts with which I torture myself every day.

HOW I FEEL ABOUT IT...

I naively hoped that I would get a direct answer with the diagnosis or that I would be given appointments for specific therapy. Unfortunately, I have to take care of that myself. At least I have been given a referral for psychotherapy.

I never wanted to talk to a stranger face to face about my problems. I don't like to force myself on people, they either decide to follow what I say or they scroll on. I can live with that. But someone who is paid to do it? Do they really care? I would like to have a team of doctors who think about me during their lunch break and work like detectives to find a solution. Who I can happily throw my arms around... Yes, being a TV junkie puts too many crazy ideas in your head.

I may be a stubborn person, but I know when I've lost. I can't get out of my behavioral patterns without help. And I really need that because I just can't calm down. And I need the peace and quiet to deal with the pain or just to forget about it. While I've been coping very well with my tinnitus (which sounds like the noise of an old TV) for 13 years thanks to meditation and relaxing music, I currently get aggressive when someone tries to relax me.

I can't stand esoteric sounds or ways of speaking. I think my pain is too intense for that. I would love to just hit a punching bag and scream everything out. But I don't have the strength to do that. Sometimes I don't even have the strength to open a water bottle.

My pain is always there, like many chronically ill people. At best, it just flares up under the skin and feels like sore muscles. At worst, it feels like the flames are about to break through the skin while dissolving the muscles. When I sit quietly here at 1:35 a.m. and write, I can bear it well, even if it's more burning than blazing. But when I have to move and my head has to deal with more, it feels like I'm being asked to carry a boulder around the apartment while solving math equations. (Math and I = not friends, never have been).

I really enjoy swimming, three times a week if nothing else comes up. 30 minutes of swimming, 15 minutes in the sauna. After three months I have unfortunately not been able to increase my stamina. I am also regularly "overtaken" by older ladies and gentlemen. After swimming I no longer have sore muscles, I feel pleasantly exhausted and the pain is reduced to a minimum for about 1-3 hours. On days like this I also find the inspiration to sit down and paint. I have discovered watercolors and hand lettering. The movements are almost meditative and I really enjoy being able to be creative again. Unfortunately my head just won't switch off completely. I am constantly thinking about everything I could do in the same amount of time. All the work that is left undone that I would otherwise not have the energy for.

If I use the balance I have gained after swimming to work through my to-do list, then there is a 99% chance that I will be in so much pain in the evening that I can hardly move. Everything has to be moderate and always flowing. Then everything is OK. But the little lively self inside me is working against me.

Next part: And then there’s ADHD.