Monika Miller, the granddaughter of former Prime Minister Leszek Miller, publicly admitted a few months ago that, in addition to fibromyalgia, she also suffers from another incurable disease that causes, among others, vomiting. In an interview with Medonet, she talks about why she decided to break the silence about her health, how she feels, whether medications help her, and why it is a challenge to go out with friends in the evening. He also jokes that he has to take a second suitcase on vacation.
- Fibromyalgia is a chronic non-inflammatory rheumatic disease of soft tissues (tendons and muscles). Difficult to diagnose, requiring a lot of research
- It is pain in part or all of the body, fatigue, insomnia
- I’ve always had headaches for as long as I can remember. No drugs were working. It was such a migraine pain, including photophobia. And after the age of 20, my neck, shoulders, neck and upper spine started to hurt – says Monika Miller
- He adds that some doctors just don’t believe in the disease
- The woman admits that she takes medications that have some side effects, but there is always “something for something”
- He has also been diagnosed with another disease for ten months. Many hypotheses have been put forward, including esophagus disease of the nutcracker type
- You can find more such stories on the TvoiLokony home page
At the end of December 2021, you publicly admitted that you suffer from fibromyalgia. Why did you do this?
It wasn’t like I knew the diagnosis much earlier, before I confessed. I decided to do it because there were a lot of questions from my friends and people with whom I work. They asked why I was sick again, on antibiotics, sad, why did I not speak up. I didn’t feel like answering casually anymore. Besides, I wanted to make people aware of what fibromyalgia is and share my experience. It is also needed by people who suffer from it. In general, in any disease, it is important to seek support from people who have the same disease. There are forums, groups, foundations …
How are you even now?
Reasonably well. My psychiatrist helped me a lot. It was more of a coincidence. He told me that he knows the disease, knows how to treat it, and I am not the only patient of his who has been diagnosed with it. He prescribed a drug, usually used in psychiatric diseases, but also recommended for people suffering from fibromyalgia. I must admit that at the beginning I was very skeptical because it is a cure for depression and I did not believe that it could help my soft tissue autoimmune disease. How could that make any sense? But I do feel better.
Make an appointment with a psychiatrist at Medonet Market, if you suffer, for example, from a mood disorder, cannot cope with the death of a loved one, nervousness, anxiety or headache and heartache, despite the correct test results.
How long have you been using it?
For over half a year. I felt the difference after about a month of taking it. I cannot say exactly when it was. I just started to wake up and wasn’t all stiff. I didn’t feel like everything hurt. This is a disease that is just characterized by the sensation of immense pain that may affect part or all of the body.
Do you remember when it started? Where was the pain?
I’ve always had headaches for as long as I can remember. No drugs were working. It was such a migraine pain, including photophobia. And after the age of 20, my neck, shoulders, neck and upper spine started to hurt. I got used to it, because it seemed to me that everyone does, and I seem to be too delicate and oversensitive. I was unable to sit in the chair. Experience one makeup at the hairdresser. The pain then became excruciating. I’ve tried everything. Rolls, rollers, tennis balls, pain gels, acupuncture. Unfortunately, massages only make matters worse.
What is this type of pain? Sharp, blunt? Does it go on or does it come in waves?
It is a pain, as if someone was walking all day with something heavy on their back. It is like the pain that happens to us when we exercise too hard. I used to train very intensively and, not yet knowing about my illness, I had enormous sore muscles after each training session. It happened that after one workout in the gym I had to wait two weeks because it hurt so much.
What specialization did the doctor diagnose your disease with?
I accidentally came to the rheumatology ward. There were suspicions of another disease. One of the attending physicians was just a rheumatologist. I had tests done, medical history had been done and this doctor said one thing for sure is that I have fibromyalgia. I was in shock. It was the first time I heard about this disease. Some of the doctors to whom I am telling you that they do not believe in such a disease …
Paradoxically, this disease is such that the more the patient rests, the stronger the pain. That’s true?
Unfortunately it is so. Movement saves me. It is also the case that any activity allows you not to focus on the pain.
The rest of the interview is available in the video.
Are you saving yourself with some painkillers? They work?
Yes. I still have the drug, but I am not a supporter of it, because it has a bad effect on memory. It is also a psychiatric painkiller. I take it for a different reason, but by the way, I found out that it has an analgesic effect. It dulls the memory and that’s not good in the profession I’m in. I’m trying to walk away from him. But this is something for something. Then it hurts more.
Do you feel blocked, e.g. professionally, because of this disease?
Something you cannot do or it is more of a challenge for you. Your body is just blocking you. This disease really blocked me when I competed in “Dancing with the Stars”. I trained very hard, also before the show, 15 minutes before going on stage, but one such attempt took me 90%. strength, energy. I went out on the dance floor and was pumped out. The social sphere is also very limited for me. I have to admit that it is very difficult for me to gather energy to go to a restaurant or club during the week. Meet someone. At. 21.00 I fall. It’s the end of my day. I also take medications for insomnia, because it’s a disease that also characterizes it. For many, many years.
You also mentioned that apart from fibromyalgia, you suffer from another incurable disease …
Yes, she is incurable. It’s such a rare disease. Until the end, still unexplored. It cannot be named exactly yet. There is no definite diagnosis. This disease is associated with ailments of the esophagus and the labyrinth, which deals with the motility of the esophagus. It is similar to gastroesophageal reflux disease (GERD). It is accompanied by downpours and vomiting. For ten months I have been undergoing tests to find out exactly what is really wrong with me. There have already been many medical hypotheses. For example, it’s a nutcracker’s esophagus, odynophagy, esophageal motility disorder. It’s hard to check. This is a functional disease. For the last ten months, I have completely disappeared because I have been to an examination or to a doctor practically every day. I had esophageal manometry, gastroscopy, and X-ray of the esophagus with fluid, with contrast.
Have these esophageal ailments now calmed down?
Yes. I was given an experimental drug. It was not known if it would help, but I was given a month to test the drug, but I have to admit that since I started taking it, I haven’t vomited once. I don’t notice the side effects of all the drugs I take. At least for now. Maybe there is one inconvenience and I am talking about it jokingly. When I go on vacation, I have to take a second suitcase.
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