Fibromyalgia: How I Live With Persistent Pain
A little less than a month ago, Lady Gaga told on Twitterthat suffers from severe pain due to fibromyalgia; the singer had to go to the hospital and cancel part of the planned concerts. Fibromyalgia is called an “invisible disease” because it has no external manifestations other than those experienced by the patient: constant pain in the muscles and bones of the entire body, fatigue and sleep disorders.
Where this disease comes from is not yet known - there is a hypothesis that, in fibromyalgia, the brain incorrectly processes nerve impulses, multiplying pain signals many times over. In tests or radiological examinations, no changes are found, and the diagnosis often cannot be delivered for years. Anya Kuzminykh told us what a person with fibromyalgia feels and what difficulties she and her family have to face.
I am twenty-three, now I live in Nizhny Novgorod: I draw, write the script and pass observation by doctors - a psychiatrist and a psychotherapist. Some four years ago, when I studied at VGIK, my back ached - I, of course, decided that the problem was in a bad mattress, and bought myself a new one - heaped up, for princesses on a pea. With bliss she lay down on him every evening, but the pain did not go anywhere. Then I was most worried about the back and neck.
The raid on the doctors took more than a year - in the center of Dikul I was diagnosed with osteochondrosis, and for several months I went to them for procedures: exercise therapy, manual therapy, physical therapy. I start when I remember: every day after studying, which I could hardly endure because of the pain, I had to take a bag with a sports uniform and go somewhere by subway, with transfers. For a person with fibromyalgia, this is hell - but then I didn’t know that with me, I waited for something that would help, I thought that regularity and a little patience were needed.
I am firmly convinced that from the very beginning, doctors in the same center of Dikul understood that it was not osteochondrosis - it could not hurt the whole body because of the slight displacement of the cervical vertebrae. Then there was the Myasnikov clinic - the same answer, painkillers, and so on. Nobody believed that after injections of ketonal or something else it didn’t get any easier for me one iota. The doctors began to look askance at me: I begged for Novocain blockades, which dull the pain for about an hour, and sometimes they did it to me. Mostly, however, they used to prick ordinary painkillers and muscle relaxants, and also recommended to visit a psychiatrist. Almost no one knows about fibromyalgia in Russia, and if everything hurts, but we cannot cure, then you will go to a psychiatrist.
Fibromyalgia is when everything hurts. It hurts to sit, it hurts to stand, it hurts to move, it hurts to sleep. It hurts from what should not
For several years I have been keeping a diary, it has been published in the magazines "Art of Cinema" and "Banner", but at the same time it is very personal. Several years ago I described fibromyalgia as: “Fibromyalgia is when everything hurts. It hurts to sit, it hurts to stand, it hurts to move, it hurts to sleep. It hurts from what it shouldn’t do. It hurts on the table, it hurts to open the handle doors. Tongue and lips go numb. Intoxication feeling. Heat. One pain flows into another, then each infuses into the previous one. Burning, nagging, pain. It can be anything and anytime. There are no dependencies. Anesthetic too. then one thing you try to pysh tsya, but once you fall into another. "
I have very adequate parents, and they supported and support me in everything. But, honestly, twenty-four hours a day, it is impossible for anyone to take out a seriously ill person. Over the years, my illness has become something of a common piece of furniture — a bedside table, for example. And the biggest problem with this disease is that nobody knows anything about it. Neither doctors nor the sick. Where does the disease come from and how to remove it - nobody knows yet.
Unfortunately, fibromyalgia is not just pain. Over time, there are serious problems with the liver due to the huge amount of drugs and secondary immunodeficiency, when the body is not able to overcome. In this case, the disease can not be cured. From the very beginning I was given painkillers that did not help muscle relaxants to relieve muscle spasm; a month and a half I was in the hospital and underwent procedures - I was doing physical therapy, then I was just recommended to sleep. There, in the hospital, when after a month the doctors realized that their methods were not working, they wrote out the most obvious drugs prescribed worldwide for fibromyalgia: pregabalin and an antidepressant. True, they still wrote some nonsense on the statement, as if they were afraid to admit that they had a patient with fibromyalgia.
I was sent more than once to a rheumatologist, who made a preliminary diagnosis of systemic lupus erythematosus. The results of the blood test every time denied this. At the same time, systemic lupus erythematosus and fibromyalgia are really related - they often happen to one person at the same time or develop one of the other. As a result, it was the rheumatologist who diagnosed me with fibromyalgia, and later he was confirmed by good neurologists and psychiatrists. Since fibromyalgia has not really been studied, I have three doctors involved: a neurologist, a rheumatologist and a psychiatrist - a good set is obtained.
At first, I waited to find this unknown diagnosis and tell me why it all hurts so much. Then I recognized the diagnosis and realized that there was no medicine. I probably still have not completely accepted it.
Unfortunately, the limitations that this disease imposes are no longer just limitations, but a completely new way of life. Before, I could put things in order during the day, go to the store, cook something and talk to someone in the evening. Now there are favorable days when I can do something from the list of cases, and unfavorable when I just have to lie. Of course, there are trips or travels - it's all very painful and uncomfortable. It is important to carry with them recipes. In Berlin, where they confirmed the diagnosis, but they also don’t know how to treat, I was mercifully given opioid painkillers - of course, if they are with them, then the prescription is also better to keep in a bag.
Also, since you look like a healthy person, it is very difficult to ask for help. But now I already spat at everyone and didn’t pick up my bag at all; I approach any person, I ask for help, and they help me. There are quite absurd situations. In Moscow at the station, it seems, Leningradsky, I did not have time to train and had to wait for the next one. Of course, it was very painful to me, albeit under pills. There is such a fence, behind which there are chairs, but only people with disabilities are allowed in there. I do not have a disability, because it is impossible to prove it in Russia. I know Americans and Europeans who have it - and makes life much easier at such times.
At first, I waited to find this unknown diagnosis and tell me why it all hurts so much. Then I recognized the diagnosis and realized that there was no medicine. I probably still have not completely accepted it. A year and a half after the diagnosis, I just lay my face in the pillow. There were moments when I could not wash myself from the pain. VGIK began to disappear from my life, where I study as a screenwriter. There are a lot of projects there - and I'm just lying at home. Month after month. I can not arrange a meeting - suddenly there will be an aggravation? I need to work, I need to write scripts and make films, but I do not know how. To be honest, I'm not a hero, not #fibrofighter (there is such a top tag in instagram) - I'm afraid of everything and see my weakness. It is very difficult for me - but I continue to live day by day.
I think that even with persistent pain, or bipolar disorder, which I also have, or systemic lupus erythematosus, which can start at any moment, you need to try to get up every morning and do something. Yes, for the first year and a half I lay face down in a pillow and visited a wheelchair; even now it is hard to take a shower. But there are those days when I get up and go to make a movie, I am on the court and am ready to drink all the drugs of the world, just to stay on the wave - this is the only thing that helps. I made my first film with Peter Mamonov, showed it at world festivals, received awards, I am preparing the next work - all with the same fibromyalgia as in the beginning. It is very important for me to have something worth living on for. It is not necessary to be Lady Gaga, but to find a reason to get up every morning with such pains is necessary.