“The skin is about to burst”: the story of a girl with a “disease of the elderly”, which often affects young people

Help Healthy Food Near Me: Rheumatoid arthritis is an autoimmune disease of unknown nature, characterized by a chronic inflammatory process in the joints and damage to internal organs. The patient develops swelling and decreases in range of motion. Chronic inflammation leads to the destruction of cartilage, its deformation.

It is one of the most severe human autoimmune diseases. Autoimmune refers to the process by which the immune system begins to attack itself.

Women get sick more often, the ratio of women to men is about 3: 1. The disease develops in all recurrent groups, but the peak falls on the most active and able-bodied age – 35-55 years.

Early 2000s. I am 19, the third year of the Faculty of Economics at the Bryansk Academy. I wake up on a May morning, get out of bed and see that the little toe is swollen several times, it has become just huge, the size of a thumb. Every touch of it causes hellish pain.

Then I did not yet understand that it was rheumatoid arthritis, for two and a half years the doctors could not make a diagnosis. The problem was that all the markers that could indicate the presence of the disease were simply absent in my analyzes.

And while I wandered around hospitals (for example, Nasonova Research Institute of Rheumatology, Moscow, Bryansk polyclinics), healers, temples and “places of power” in search of answers and the right treatment, the symptoms became stronger, shifted from feet to hands and knees.

A year before that, I met my future husband. Soon we decided to get married. I remember there was a competition at the wedding, the guests tried to steal my shoe.

When they pulled her off her swollen foot, I practically passed out from the pain.

At the age of 21, I moved to Moscow, where my husband lived. Despite the illness, I quickly found a job and tried to live a normal life. But very soon she became a hostage to her apartment and her body, she could not go anywhere.

In the morning I lay in bed for a long time, waiting for the stiffness to pass. I had to quit because I could not physically perform duties, even just fill out paperwork. Imagine: you can hardly move from room to room, unable to hold a spoon, fork, toothbrush, pencil in your hands – your fingers simply unclench from pain. My husband helped me get dressed, buttoned, use the toilet.

“The feeling that a tractor drove over me”

I say “imagine” and I understand how difficult it is. Indeed, in the minds of our society, rheumatoid arthritis is a disease of the elderly. Maybe that’s why, being ashamed of their condition, people with such a diagnosis rarely talk about it.

Even my family cannot always understand my condition. When I tell my husband “I have a pain like this” (I describe the level of sensations), he replies that this cannot be: “If this is true, you should now lie down and not move at all”.

And I’m used to living with pain, during exacerbations it becomes everyday.

Rheumatologists rate the degree of pain on a scale from 0 to 10. Patients are asked to name the number corresponding to the level. Before I was diagnosed and prescribed treatment, my hands were huge, my fingers did not bend, it seemed as if the skin was about to burst. And believe me, the scale from 0 to 10 is not enough. I couldn’t think of anything but pain. And the morning began with the quest “how to get out of bed.” The feeling that a tractor drove over me, or that all the joints were crushed with a hammer. 

“An aunt with a swollen face and a square body looked at me in the mirror.”

So, everyone tried to treat me. The moment came when I lost hope, realized that I no longer want to live with this pain. And just at that time, doctors were found in the Bryansk diagnostic center (and this was not the first time I went there), who took responsibility and made a diagnosis based on symptoms, not tests. Medical therapy began, an immunosuppressive drug was prescribed – it is also used in chemotherapy, but in much higher doses than in autoimmune diseases.

Within six months, I began to feel quite bearable. About a year after the diagnosis, I went into the office and practically returned to her former life.

Somehow in the fall I again felt stiffness, there was swelling of the hands. The doctor was far away, in another city. And I was all at work, ahead of me was a vacation in hot Egypt. Well, it was not before that. And suddenly I remembered that when they could not diagnose me for a long time, they gave me a “magic” injection in the hospital, after which I practically fluttered. I found an extract, figured out the drug – it was from the group of glucocorticosteroids. She began to prick. Intramuscularly. On demand.

At first it really fluttered, then the injections became more frequent, and the effect was less and less pronounced. I remember well the early morning of January 1st.

I look at myself in the mirror, and some aunt with a thick, swollen face and a square body is looking at me.

Such a bedside table with thin handles and slender legs. I cried, cried, pulled myself together and gave up self-medication (only then I realized how I risked my health – the drug had a lot of side effects from mental disorders to adrenal insufficiency, which can turn into an acute form). I went to the doctor to adjust the therapy. Finally, she came up to me.

“I held the child in my arms through pain”

Remission began. Before her, I constantly walked in sneakers, and then “my soul rushed to heaven.” She became a shoe shopaholic, and only after 120 pairs of shoes, which were mostly heels, did she calm down a bit.

Sport has returned to my life. Of course, I gave up the idea of ​​skydiving after learning what it means to be practically immobilized from hellish pain, stiffness and swelling. But there were no bans on swimming and, for example, stretching. You can even work out in a fitness club, but carefully and with a mandatory warm-up.

After another 10 years of stable remission, I decided to give birth. On drug therapy, pregnancy is a contraindication. If you are taking medication, then contraception is a must. Some doctors did not recommend having a baby at all. But during remission, I made my choice, left work in advance to prepare the body and get rid of the stress, changed the treatment to a less aggressive one.

The pregnancy itself was proceeding quite well. But I was constantly under the supervision of a rheumatologist-gynecologist tandem. Immediately after giving birth, I began therapy incompatible with breastfeeding, so my son is an “artificial” from birth. But, nevertheless, the aggravation overtook me, however, six months later.

The kid, constantly spinning and spinning, I held in my arms through the pain.

I could not dress him properly, take a walk with him. Nerves were on edge, and at this moment the psychotherapist helped.

“When I asked the chief for a sick leave, he did not understand me.”

Then it turned out that none of the basic therapies helped me anymore, leukopenia began (a decrease in the number of leukocytes per unit of blood volume, – approx. Healthy Food Near Me). Then I started the process of getting a disability so that the state would provide me with a genetically engineered drug, an expensive medicine (it takes about 50 thousand rubles a month). In March 2020, they gave me the third group, for a year. By May, despite the pandemic, it was already possible to get the opinion of the commission and start taking medications. Remission is still a long way off, but his condition is already much more stable. Hope I can get to work soon.

Unfortunately, so far our society does not know anything about this disease at all. Except for those people who have already encountered it. When I first announced the diagnosis to my boss, so that I could participate in the GIBT study (genetic engineering biological therapy, – approx. Healthy Food Near Me), they just didn’t understand me.

We thought it was like a headache, and you don’t have to ask for time off.

Where does the disease come from and can it be cured

According to doctor-rheumatologist, candidate of medical sciences Yulia Voinova, the causes of the development of rheumatoid arthritis are still unknown, although several theories have been put forward and discussed:

— The trigger factor can be stress, previous infection, surgery, hormonal changes (pregnancy, childbirth, lactation, menopause), — says the doctor. — Rheumatoid arthritis is not limited to joint damage; many organs and systems are involved in the process. In addition, it is often associated with an increased risk of developing severe infections, cardiovascular diseases, and tumors, which leads to a reduction in life expectancy.

The “calling card” of rheumatoid arthritis is the defeat of the hands, but almost any joint can be involved in the pathological process.

Patients are often worried about pain, swelling, joint stiffness and restriction of movement in them, and in the later stages there is a change in appearance, up to disfigurement.

The disease is incurable. But in some cases, it is possible to achieve a stable remission, which allows patients to live a normal life: work, travel, have families, have children.

— Today there are both standard anti-inflammatory drugs, symptomatic drugs for pain relief, and modern genetically engineered biological therapy. The last group — these are drugs obtained using genetic engineering technologies and capable of targeted (pointwise) impact on various mechanisms of the development of inflammation, — says Yulia Voinova. — Unfortunately, it is impossible to avoid surgical treatment – joint prosthetics. This occurs in cases of late diagnosis of arthritis, inadequate or untimely treatment, aggressive course of the disease itself. 

A significant share of the responsibility falls on the patient himself: this is strict self-discipline and self-control, daily adequate physical activity, physiotherapy exercises, and rehabilitation. All this combined allows not only to lead the patient to the desired goal — stable remission, but it will also avoid complications in the future.