『まじめに、線維筋痛症の話。』
Let Me Talk about
“Fibromyalgia”
I rarely write about my illness…
But I thought that I should write about it today.
Recently Lady Gaga announced that she was taking a break from performing after revealing her health condition.
https://headlines.yahoo.co.jp/hl?a=20170913-35107205-cnn-int
She has the same condition as me, which is "Fibromyalgia."
In short, it is a disease that causes severe pain in the whole body.
For those who want to know more:
→ http://www.jfsa.or.jp/page0101.html
My condition has developed since I was in the eleventh grade (the simultaneous onset of Myalgic Encephalomyelitis and Cerebrospinal Fluid Depletion) and now I live with Fibromyalgia every day.
It is the twelfth year now.
I consulted 16 doctors, and I underwent many examinations before I was diagnosed with this disease. It took one and a half years from the onset to be finally diagnosed, and every one of those days was hell.
First of all, if you do not know "what the sickness is," you cannot take medicine or treat it, so you have to endure the pain. Commercially-available pain killers do not work.
Even with a diagnosis, there is still no established cure for the disease… I tried medicines which were "highly likely" to respond to this disease.
As I was not relieved of any of the pain, I was also advised to consult at a pain clinic (anesthesia department) to help relieve my condition, and I searched and tried such clinics.
However, there were pain clinic doctors who did not understand Fibromyalgia and thus were unable to provide me any relief.
So I started a journey to find the right pain clinic for me. I visited many pain clinics until I finally met a doctor at Takeda Clinic in Gifu City, who has an understanding of the illness I am currently dealing with.
When I started going to the pain clinic, I was hospitalized every day and had over 40 injections all over my whole body. (Three times a week now.)
People often say, "Injections hurt, don’t they?" Of course they do, but the pain of my body without them is way worse than that of an injection needle. After the injections is the only period when I can relax. (I still have some pain though.)
The effect of the injections lasts only for 3 hours or so, but without this period, I would…
“I would go crazy without this treatment.”
(NEWS ZERO coverage picture)
I'm sorry this is a very old picture.
This disease is so painful that it drives me crazy!!
For 24 hours, my whole body aches intensely.
It feels like my body is being squeezed tightly, sometimes my whole body is throbbing in pain.
On bad days I would be in agony just from a wind blowing clothes against my skin. Even washing hands in tap water can be painful.
Without the medications and the pain clinic treatment, I cannot move at all and every day would be like hell.
There is no clear explanation or cure for the disease, but with appropriate treatment I can manage to live somehow.
In my case, the support and understanding from my family is huge and it enables me to live. There are many patients that don't have the support or understanding from those around them.
As this disease has not been designated as an intractable disease, it is currently difficult to receive any welfare support for it.
This disease is not easy to be understood at first glance.
Please do not think, “Does it hurt when nothing is wrong? Isn’t it just a mental problem?” No, no, it REALLY hurts.
There may be some people who are sick with "Fibromyalgia" around you as well. Or, some people may have diseases and symptoms that you do not know.
When you see such people, I would like you to do this:
Please “believe” what they are telling you, especially when they are close and special people for you. The support from others alone gives me a reason to face the disease and a power to stand up.
The cause of the illness 'Fibromyalgia' is unknown and treatment has not been established. But everyday medical care is progressing and I believe that one day there will definitely be a cure. I believe in this hope because I have people who believe in me.
Every day I take more than 20 tablets of strong pain reliever... If I want to have a baby, I will have to stop this medication.
Without a cure, the pain will never go away. To tell the truth, not many people have overcome this condition.
Nonetheless, as long as we are alive, there are still many possibilities.
It is very sad that Lady Gaga has is also suffering from this disease. I am a big fan of her. Thanks to her announcement, however, I'm sure the condition will now become better known all over the world.
This will also give hope to those suffering in the world.
This is not a fatal disease, but it sometimes makes me feel like dying. There have been many days when I just feel like disappearing, but the support from people around me has pulled me through this hell.
So I am also striving every day to become a supporter for others.
Through my media work I can make people more knowledgeable about this disease. I hope many people will search on the Internet about me and my condition.
I also hope that you will care about patients in the world. It may be presumptuous of me, but I will do my best on my end little by little.
Finally, I pray that Lady Gaga's health condition will improve soon.
※ Patients have various symptoms and there are various effective treatments.
Akari Tsukamoto