My wife Andrea started a crowdfunding campaign to raise funds to help her fight fibromyalgia — a nasty chronic condition that causes her a lot of pain.

If you decide to donate, there is a link to her campaign at the bottom. This platform doesn’t charge any fees so 100% of money will go to her.

If not (which is just fine), you can understand what she is going through right now.

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My name is Andrea, I am 53 years old, I have 4 children and no prospects. I lost my home, my son, my health and I am losing my daughters. For years, I’ve been a person who would help others; I even set up an organization for this. So, asking for help for myself is really hard.

Each night, I fear going to bed. I am afraid of the mornings because they can be unbearable for those suffering from fibromyalgia. I open my eyes and my body is screaming as if I have run a marathon or unloaded railcars with my bare hands. It feels as if your body is aching from a flue and you’re having muscle soreness at the same time, which never stops. Tears often stream down my cheeks. Touching a pillow or my clothes also hurts. Each morning I fight my own body that resists even minor movements. After a few hours, the stiffness will go away, the tendons and ligaments will warm up, mobility will return, and ONLY strong pain will remain, which is usually only partially relieved by an opiate medication. Our youngest daughter Danka will walk down the stairs from her bedroom just before lunch, pain expressed on her face. She is only 19, she is supposed to be enjoying life, but she’s also got fibromyalgia. She is dreaming to become a surgeon, but… Nothing can relieve her pain at all, the pain is so strong that she is losing the will to live, and I just can’t helplessly watch it.

When people see the external appearance, they have no idea what’s inside

Photos say little about what we are going through. We often want to show a prettier reality and leave the sad things behind closed doors. Until you can no longer keep fighting on your own.

I’ve had fibromyalgia for decades. I’ve been going to see all kinds of doctors about my pain since I was 17. It is invisible, untreatable and nowadays it is no longer a rare disease though its origins are still unclear after about six thousand medical studies. There are no methods to diagnose it, there are no drugs to treat it. The diagnosis is usually made by a rheumatologist, but medications to relieve symptoms are prescribed by a neurologist, algesiologist (pain management specialist) or a psychiatrist. Danka is highly resistant to all medications, and as for me, I either have strong intolerance to most of them or they cause allergic reaction. This is nothing unusual for those with fibromyalgia. I’ve spent 6 long months at a hospital. They tried different medications and kept me under observation, but finally they had to discontinue all medications except for painkillers that I actually shouldn’t be taking due to poor blood clotting and intestinal issues.

Fibromyalgia is not just about pain. It has more than 250 symptoms and coexisting conditions. I’ve got many of those. The hardest of all is insomnia and never-ending fatigue, the restless limbs syndrome, the irritable bowel and bladder syndrome. I sleep from 0 to 5 hours a night due to pain and I wake up even 10 times a night. Chronic fatigue has been torturing me for decades, I can’t remember anymore when was the last time I felt rested and without pain at least for 1 day. Since this is a pain signal transmission disorder, everything that has nerves hurts. It’s not just muscles, joints, tendons or nerves; stomach, bowels, bladder, head, chest can hurt, too… We’ve got digestion problems as well.

The disease totally limits and isolates us

We’ve lived in Russia for 33 years. As the war broke out, we escaped in the middle of the night, leaving all of our lives behind. The NGO I was building, our foster son we had taken from an orphanage, friends, our house, our family scattered all over the world apart from Ukraine and Russia. In recent years, I’ve had many serious surgeries, experienced clinical death, but still I tried to work and help orphans and their foster families, I taught Slovak to Ukrainian doctors, Russian students as well as Slovak kids, I worked as a tutor for sick kids and for my own kids. Against the backdrop of all those events, my father was dying of cancer and my mother-in-law was getting chemo treatment after a cancer surgery. At the end of November, it will be one year that my father has passed.

The loss of our home and having no sense of safety resulted in PTSD that we all have. My arms hurt less after complex surgeries, but I was down with Covid twice and on top of that I’ve got asthma and it’s hard to breath without an inhaler. Covid was followed by Lyme disease so all that made my condition so much worse that I cannot fully use my arms or hands. I cannot slice food, open a bottle, clean up, iron clothes, hold a phone more than just a moment or type on the computer because my arms stiffen and hurt. I push a shopping cart with my belly, I change hands while driving. There are days when it hurts to turn a door knob, wash my face or use toilet paper. The constant lack of sleep brought about depression. I can’t work, I’ve been on a sick leave for three years as an unemployed person without any income. A disability examiner wrote to me that fibromyalgia did not affect my condition. In today’s Slovakia, it is almost impossible to get a disability pension due to fibromyalgia. They only approved my disability status for a year, and even then it was for depression. I am now working to change this with lawyers.

Danka quit her studies after completing the first year. She is so much pain that she can hardly walk, and even though she’s got her diagnosis, due to her age many doctors don’t believe her because they either know little about the disease or nothing at all. An algesiologist prescribed opiate-based medications for me and vitamin C for her. She has no desire to live because of the pain and desperation. A rheumatologist makes a diagnosis and sends her to a neurologist. A neurologist sends her to a psychiatrist who says she’s made it all up and kicks her out, a pain management specialist sends her to a psychiatrist and it goes on and on. Almost every patient suffering from fibromyalgia encounters medical gaslighting, especial young people. Their symptoms are trivialized at best or completely ignored and ridiculed. The young girl is locked up at home because she is exhausted, can’t sleep and everything hurts, she doesn’t feel like eating. She doesn’t interact with anyone and hardly goes anywhere. She has no strength.

Th eldest of our four children, Kira, studies psychology. Since I cannot work, she has a part-time job as a student, but she is actually also sick. She graduated from a music college, but because of the pain related to her musculoskeletal system, she cannot play cello she adores anymore. So not only did she lose her home, her brother and her friends, she is no longer able to pursue her passion. Her condition is deteriorating and it looks like after the New Year she won’t be able to work due to her absences. She also has PTSD, which worsens due to her concerns about Danka with whom she very close. There are days when she is unable to get up from her bed.

Our eldest son quit studies during the graduation year and started working to become self-sufficient, not to be a burden for us and pay for his own therapy. He rents a small room and works a lot. He also has PTSD and musculoskeletal issues. He spent his entire vacation visiting doctors. He is a successful programmer with a very high IQ, but he cannot handle both work and studies due to his health condition. We really hope he will finish his school as the situation improves. He has a hard time dealing with the situation that some of his friends and classmates were sent off to war.

My husband is doing his best, but he is alone for everything. He’s got three sick women at home who cannot take care of the household. He earns money, does house chores, walks our dog, washes dishes, because I often can’t load or unload the dishwasher… We have a roof over our heads and all basic needs are taken care of, but medical treatment for the three of us is very expensive and unaffordable.

Despite that I am very ill, I don’t sit still. Since fibromyalgia patients do not have any help or support in Slovakia, I became one of the co-founders of a new NGO – Fibromyalgia Slovakia. I am also a volunteer with League for Mental Health and I am learning to become a peer consultant so I could provide qualified help to chronically ill patients suffering from mental health issues, and not only to them. Until now it’s hard for me to accept that I have an incurable disease that, on top of that, one of my daughters has inherited from me.

Even just relief is a win when the disease cannot be treated

Since we are resistant to drugs, the main help for our condition doesn’t involve any drugs. So we really need long-term rehabilitation as the disease cannot be cured and no permanent effect can be achieved.

We rely on doctors’ recommendations and on The FibroManual, a book on fibromyalgia written by American doctor and concurrently a fibromyalgia patient Ginevra Liptan, M.D.

In order to improve the quality of life and reduce symptoms, the following treatments are recommended (in addition to medications), which of course are not performed all at once and require repetition:

  • Neurofeedback at Mind&Body clinic where therapy is paid by patients – a standard price for one session is €50 and one person needs at least 40 sessions,
  • Craniosacral therapy, one session is €50 and one person needs at least 10 sessions,
  • Fascial massage, €50 and one person needs at least 10 massages,
  • Relaxing massage, €50 one massage, at least 10 times, which is not much,
  • Psychotherapy by a trauma specialist, €50 per session, once a week for a year, I would need several years,
  • PTSD group, €400 a year, once a month for Andrea; €800/year for Dana, twice a month,
  • Physiotherapy, some of this is paid by the insurance company, some I need to pay on my own (€1,500/year),
  • Mandatory food supplements, magnesium malate, magnesium glycinate, vitamin D3, Omega 3, vitamin B complex (€450), vitamin C in IV infusions prescribed by a pain management specialist, 1 infusion/€12/total €84 (Andrea has 5, Dana – 3) since our bodies don’t properly absorb nutrients from food, there is permanent deficit,
  • Probiotics (I don’t know yet, waiting for a visit to a gastroenterologist) and enzymes (Wobenzym for 3 months, minimal dosage for the two of us is €600) to calm restless bowels,
  • Examination by a podiatrist (foot doctor) and production of specialized insoles for 3 persons is €450 in an attempt to avoid yet another surgery,
  • Balneotherapy for Andrea – balneotherapy was prescribed by a neurologist, but for B group patients (that I belong to) the insurance company does not pay for accommodation or meals, which makes even the cheapest balneotherapy expensive, around €1,000 for Andrea; if there is enough money, balneotherapy for Dana, we will check with a doctor – tentatively Dudince or Nimnica spas in Slovakia (the cheapest ones),
  • Cleaning – it would help if once a month someone came to clean up the house, or wash windows once every 6 months.

I estimated some of the expenses to cover the minimum required course of treatment, which is not sufficient, some others are for the entire year if we do it once a week. The estimate is based on the full amount without potential discounts.

If I raise less than required, I will sacrifice balneotherapy, there will be fewer therapy sessions and we can do without house cleaning (like washing windows).

If I raise more than required, I plan on donating the funds to Fibromyalgia Slovakia NGO to help other fibromyalgia patients.

We cannot do what we’ve loved because it hurts or it’s too difficult. This disease totally limits and isolates us. We cannot ride a bike, go hiking, play musical instruments, or simply go out to meet people as often as we would like to. Some days are better and some are worse, but we refuse to give up. With your help, we can improve the quality of our lives and mitigate suffering.

Even just relief is a win when the disease cannot be treated. If I get better, I will be able to help other people more, and hopefully get a job. We hope that Danka will be able to return to her studies at the School of Medicine in Bratislava where she can suspend her studies for only one year.

If you decide to help us on our way to a less painful life, we thank you from the bottom of our hearts in advance.

https://donio.sk/pomocandrei?lang=en

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