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A Call to Revolutionize Chronic Pain Care in America An Opportunity in Health Care Reform

Fibromyalgia: How I Live with Chronic Pain

Fibromyalgia How I Live with Chronic Pain

Five years ago Lady Gaga told on Twitter that she had 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, except for those that the patient experiences: constant pain in the muscles and bones of the whole body, fatigue and sleep disturbances.

Where this disease comes from is still unknown – there is a hypothesis that with fibromyalgia, the brain incorrectly processes nerve impulses, repeatedly amplifying pain signals. During analyzes or X-ray examination, no changes are found, and the diagnosis often cannot be made for years. Thelma Fincher, a Connecticut resident, told us what a person with fibromyalgia feels and what difficulties she and her family have to face.

Living with fibromyalgia: Thelma’s personal experience

“I am 23, now I live in New Haven, Connecticut: Four years ago my back hurt – of course, I decided that the problem was in a bad mattress and bought a new one, but the pain did not go anywhere. Then my back and neck bothered me the most.

The full medical examination took more than a year – I was diagnosed with osteochondrosis at Yale New Haven Hospital Spine Center, and for several months I went to the clinic for procedures: exercise therapy, manual therapy, physiotherapy, and others. My medical bills were huge at that time. I even had to borrow money twice. Since the cash was needed urgently, the best solution was to apply for cash advance CT. I borrowed $500 in January and then $400 more in March. I had the money in my account the same evening so I complete the examination quickly. Indeed, cash advances (or payday loans) can save your life in an emergency. The entire process is online and you can apply around the clock. The main thing is to repay the debt as scheduled.

I shudder when I remember it: every day after studying, which you can hardly endure because of the pain, I had to take a bag with a sports uniform and go somewhere by metro. This is hell for a person with fibromyalgia – but then I didn’t know what was happening to me, I was waiting for treatment to help, I thought that I needed regularity and a little patience.

I am firmly convinced that from the very beginning, the doctors understood that it was not osteochondrosis – the whole body cannot hurt because of a slight displacement of the cervical vertebrae. Then I went to the Advanced Diagnostic Pain Treatment Center – the same diagnosis, painkillers and so on. No one believed that I didn’t feel any better after injections of painkillers. I begged for novocaine blockades, which dulled the pain for about an hour. Basically, however, they injected ordinary painkillers and muscle relaxants, and they also recommended visiting a psychiatrist.

For several years now I have been keeping a diary. A few years ago, I described fibromyalgia like this: Fibromyalgia is when everything hurts. It hurts to sit, it hurts to stand, it hurts to move, it hurts to sleep. It hurts from anything. It hurts to shake hands, it hurts to open the door handle. Numb tongue and lips. Feeling intoxicated. Heat. One pain flows into another, then each merges into the previous one. Burning, whining. Painkillers do not help.

I have very adequate parents, and they support me in everything. But, to be honest, no one can bear a seriously ill person twenty-four hours a day. Over the years, my illness has become something like an ordinary piece of furniture – a bedside table, for example. And the biggest problem with this disease is that no one knows anything about it. Neither doctors nor patients. Where the disease comes from and how to remove it – no one knows yet.

Unfortunately, fibromyalgia is more than just pain. Over time, serious problems with the liver appear due to the huge amount of drugs and secondary immunodeficiency, when the body is not able to overcome anything. In this case, the disease cannot be cured. From the very beginning, I was given painkillers that did not help. I spent 1 month in the hospital and underwent procedures – I was either given physiotherapy or simply recommended to sleep. There, in the hospital, when the doctors realized a month later that their methods were not working, they prescribed me the most obvious drugs used worldwide for fibromyalgia: pregabalin and an antidepressant.

I was repeatedly referred to a rheumatologist who made a preliminary diagnosis: systemic lupus erythematosus. The results of the blood test each time refuted this. At the same time, systemic lupus erythematosus and fibromyalgia are indeed related – they often occur in one person at the same time or develop one from the other. As a result, it was the rheumatologist who diagnosed me with fibromyalgia, and later it was confirmed by good neurologists and psychiatrists. Since fibromyalgia is not really studied, I have three doctors: a neurologist, a rheumatologist and a psychiatrist.

At first, I expected that they would find this unknown diagnosis and tell me why everything hurts so much. Then I learned the diagnosis and realized that there was no cure. I probably still haven’t fully accepted it.

Unfortunately, the restrictions that this disease imposes are no longer just restrictions but a completely new way of life. I used to be able to clean up during the day, go to the store, cook something and chat with someone else in the evening. Now there are favorable days when I can do one thing from the to-do list and unfavorable days when I just have to lie down. Of course, there are also trips or moving – it’s all very painful and inconvenient. It is important to carry prescriptions with you. In Livwell Pain Management, they confirmed my diagnosis but also don’t know how to treat me, they mercifully gave me opioid painkillers – of course, if you have them with you, then it’s better to keep the prescription in your bag too.

Also, because you look like a healthy person, it can be very difficult to ask for help. But now I don’t give a damn about everyone and don’t pick up my bag at all; I go up to any person, ask for help, and they help me.

At first, I expected that they would find this unknown diagnosis and tell me why everything hurts so much. Then I learned the diagnosis and realized that there was no cure. I probably still haven’t fully accepted it. A year and a half after the diagnosis, I just lay face down in the pillow. There were moments when I could not take a shower because of the pain. My university began to disappear from my life. There are a lot of projects – and I’m just lying at home. Month after month. I can’t arrange a meeting. I need to work, but I don’t know how. To be honest, I’m not a hero, not #fibrofighter (there is such a top tag on instagram) – I’m afraid of everything and admit my weakness. It is very difficult for me – but I continue to live from day to day.

I think that even with constant pain or bipolar disorder (which I also have) or systemic lupus erythematosus (which can start at any time), 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 was in a wheelchair; even now it’s hard to take a shower. But there are days when I get up and go to meet, I’m on my friend or go shopping, and I’m ready to take all the drugs in the world, just to stay on the wave – this is the only thing that helps. It is very important for me to have something for which it is worth living on. You don’t have to be Lady Gaga, but finding the meaning of getting up every morning with such pain is a must.”

Category: General

Tags: chronic disease, chronic pain, Fibromyalgia:, medicine

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