Red tape hobbles traumatized Gaza border residents hit with fibromyalgia

Increasingly frequent clashes between Israel and terrorist groups based in the Gaza Strip have been taking their toll on residents of communities adjacent to the border, where the number of people diagnosed with fibromyalgia has increased exponentially over the past few years.

The disorder is characterized by widespread musculoskeletal pain, fatigue, sleep, memory and mood issues. Data by the Health Ministry and Asaf, the Israeli fibromyalgia association, suggests that some 4% of Israelis – 240,000 people – are affected by fibromyalgia and its sibling-condition, Chronic Fatigue Syndrome, both of which affect more women than men.

There is no known cure for fibromyalgia and daily care focuses on managing its symptoms. It usually includes lifestyle changes and alternative treatments such as hydrotherapy, cognitive and behavioral therapy and in some cases, medication.

Fibromyalgia thus joins a host of other stress disorders afflicting the rocket-plagued south where, according to a report released in May by NATAL – Israel Trauma and Resiliency Center, there has been a significant increase in the number of Israelis suffering from symptoms of traumatic stress.

“People who have been diagnosed [with fibromyalgia] over military campaigns in the south or over rocket fire of 500 projectiles or more a day, shouldn’t have to pay for treatments and medication themselves, nor should they be subjected to the prolonged, humiliating process of facing social security [eligibility] committees, which can drag on for years,” Efrat Ohayon, who heads the fibromyalgia patients’ struggle over the issue, told Zman Yisrael, the Hebrew sister site of The Times of Israel.

Ohayon, a resident of Ofakim, a southern town some 25 kilometers (15 miles) from the Gaza Strip, said that dozens of Israelis in the greater Beersheba and Ashdod areas have been diagnosed with the debilitating chronic pain syndrome over the past two years alone.

The timeframe correlates with the increasing number of clashes between Israel and the Gaza-based terrorist groups, Ohayon said, but still, the state has failed to address the issue despite dozens of medical studies indicating a direct link between the disease and the security escalation.

“If we have to, we’ll file a class action suit and take the state to court,” she stated.

Prof. Dan Buskila, a rheumatologist with the Soroka University Medical Center in Beersheba and a member of Ben-Gurion University’s Faculty of Health Sciences, has researched the subject. He explained that there is a clear and definite connection between security tensions in the south and what he described as an outbreak of fibromyalgia in the region.

“Stress is known as a trigger for either the onset or the exacerbation of a flare-up of fibromyalgia,” he said. “Patients who have already been diagnosed often see the disease become aggravated during times of increased stress. Patients often report flare-ups when a Qassam [rocket] falls, after prolonged stays in secure rooms, or over sirens or missile fire.”

“Many times it starts with mental trauma — post-traumatic stress disorder — and evolves into fibromyalgia,” Buskila said. “In a study I conducted several years ago, we concluded with certainty that there are more fibromyalgia patients in the Gaza-vicinity area than in other areas. There is no doubt that the security situation has actual physical consequences.”

There is no doubt that the security situation has actual physical consequences

“The disease disrupts the pain mechanisms in the brain and the central nervous system so that any pain is experienced as significantly amplified. The side effects of the disease are fatigue, concentration and memory problems, depression and anxiety,” he said.

A rain of mortars

One resident of Sderot, some 2.5 kilometers (1.5 miles) from Gaza, who requested that his name be withheld, doesn’t need Buskila’s studies to know that his fibromyalgia was triggered by tensions on the southern border.

That resident was diagnosed with the disease in late 2018, following a two-day flare-up during which an unprecedented 500 rockets and mortar shells were fired on southern Israel.

“I remember the exact day when my body stopped fighting,” the resident recalled. “There were constant sirens and a lot of hits. I was rushing my children into the secure room when I remembered that my daughter was outside, riding her bike with some friends. Those were excruciating moments and my body just couldn’t handle it. I screamed her name, but she was too far away to hear me. I have no doubt that that was it — that’s the moment I got sick,” he said.

Since that day, the resident began experiencing intense pain, usually in the form of sharp pains, all over his body. Later he began experiencing increased fatigue, weakness, leg pain, and muscle pain. Puzzled by his symptoms, the resident began a battery of medical tests, which failed to yield an answer.

“I would get really depressed in the evening. I couldn’t help with anything around the house, I couldn’t be with the kids — my legs would hurt so much that at a certain point I couldn’t quite move them in the evening. The situation got progressively worse until my doctor asked me to undergo a test for fibromyalgia. It came back positive and from that moment on, my life changed completely,” he said.

‘My body gave out’

Thirty-six-year-old Ella Raskin, a resident of Kibbutz Erez, 1.5 kilometers (less than a mile) from Gaza, began experiencing the onset of fibromyalgia in 2014, soon after the conclusion of Operation Protective Edge.

“I was just starting a new job and I was very energetic, but I had to quit only a year later, when my body essentially gave out,” Raskin said.

Raskin described being in a lot of pain, with frequent high fever. She said she could not walk properly, lost a significant amount of weight, and felt a constant, unexplainable fatigue.

“My son was almost a year old and at first, I attributed the fatigue to childbirth,” Raskin said. “I tried fighting it, but it was impossible. I had blood tests done and everything came back perfectly [normal]. Still, every morning I would wake up as if I hadn’t slept at all.”

Raskin said that it was at that point that she began reading online about chronic fatigue, which is when she came across a disease called fibromyalgia. Realizing that the listed symptoms matched exactly what she was going through, she asked her doctor about it and was referred to a rheumatologist, who verified the diagnosis.

Operation Protective Edge ended in August, and my pains started almost immediately afterward. There’s definitely a connection

Raskin also believes the security situation in southern Israel triggered her disease.

“[Operation] Protective Edge ended in August, and my pains started almost immediately afterward. There’s definitely a connection. A few months after the fighting my body began aching. During the war and a little after it, I was on auto-pilot. I took painkillers to make it through the workday. Anyone who thinks the [security] situation doesn’t affect you physically is wrong,” she said, adding that “Every siren immediately affects the pain.”

Asked whether she was currently doing better, Raskin replied, “Having fibromyalgia is like being trapped in your own body, with your head going forward and your body failing to keep up. The kids know that they can’t touch me or yell near me. I have to muster considerable energy just to make dinner, and even that doesn’t always work.”

‘Being afraid is unpopular’

Rona Raviv, 50, a resident of Kibbutz Bror Hayil, 8 kilometers (5 miles) from the coastal enclave, began experiencing joint pain soon after Operation Cast Lead in 2008, but was only diagnosed with fibromyalgia in 2011.

“Around here, being afraid is unpopular,” she said. “I was diagnosed soon after a Qassam [rocket] hit Kibbutz Mefalsim [a mile from Gaza], where I was living at the time. The siren wailed and then we heard this crazy boom. The Qassam hit the kibbutz and rumors started flying that it hit the kindergartens.”

“Then I realized that my son and two of his friends were on their bikes, heading to that area to volunteer, and rushed over there. On my way, all I could think about was – that’s it, they’re dead. They’re gone,” said Raviv.

“I got there moments after the [rocket] hit to look for them. Everything was black and there was dust everywhere,” she said. “Walls had collapsed, cabinets and dressers fell to the floor — it was a chaotic scene. I was walking around terrified I would find them dead.”

Then came a text message from her son, telling her they were all somewhere else, safe and sound.

“That’s where I think my body reacted to the trauma, and it was very intense,” Raviv said. “It’s like my mind and my body couldn’t shake those moments of horror; the understanding that it could happen to me, that I could lose my child, suddenly became very real.”

It’s like my mind and my body couldn’t shake those moments of horror

“I slowly realized that I needed to take care of myself. I stopped watching the news because I could no longer stand hearing the names of those killed [in the fighting in Gaza]. The pain in my back, legs and muscles, and the lack of concentration and sensitivity to light and touch — every security incident makes things worse,” she said.

Since being diagnosed, Raviv hasn’t been able to work as she once had. She went from earning NIS 26,000 [$7,400] a month to making barely NIS 3,000 [$850] as a travel agent marketing her own niche of concept business trips, she said.

She said that despite having built for herself a good reputation and solid income, she was forced to leave it all behind during Operation Defensive Edge.

“I hurt people who were close to me, hurt my clients, and made mistakes at work, and I suffered huge financial losses,” Raviv said. “I started to stay home and developed depression and anxiety, which are part of the disease. Fibromyalgia causes a lack of concentration, and when I started making mistakes at work I realized that that was it — I had to close the business. I just couldn’t function.”

Raviv said that her fibromyalgia gives her something like an unwanted sixth sense.

“Having fibromyalgia augments things,” she said. “Just like I feel pain more intensely than anyone else, when the helicopters begin flying overhead, it’s like I can feel the beginning of another round [of violence] before everyone else. I know everything beforehand. My senses have changed. It’s like someone peeled off my skin.”

My senses have changed. It’s like someone peeled off my skin

Like others with the condition, Raviv is severely limited in what she is able to do for work. She makes a living through jobs referred her way through Enosh, the Israeli Mental Health Association, which they vet beforehand, she said. Whatever work comes in must be stress-free, and not involve heavy lifting or even being seated for extended periods of time.

“Fibromyalgia means instability. Whenever it seems like things are finally settling down, new hostilities erupt and shuffle the deck,” Raviv said.

Jumping through bureaucratic hoops

Fibromyalgia patients find it increasingly difficult to exercise their rights vis-à-vis the health care system, particularly with respect to the National Insurance Institute (NIII), the government agency responsible, among other things, for handling social security claims pertaining to any disability.

The problem begins with the fact that there’s no specific definition of fibromyalgia

“The problem begins with the fact that there’s no specific definition of fibromyalgia,” Raskin said. “In May last year, I was scheduled to go before an NII committee that was supposed to confirm my status as suffering from PTSD, because as it turns out, in Israel, the only way for fibromyalgia patients to get help is to first be recognized as suffering from PTSD.”

“The day I was supposed to go before the committee, in Ashkelon, [Gaza terrorists] fired a barrage of rockets at the city, but the appointment wasn’t canceled. So I ended up sitting across from the people who were supposed to affirm my PTSD status with rockets being fired on us. I was experiencing terrible anxiety. It was an insane situation,” she said.

According to Raviv, the process of dealing with the NII is “long, disappointing and very unpleasant.”

“For a year, I sent letters, supplied documentation and answered personal questions,” she said. “Eventually, I just gave up. I expect the state to help me over the hours I can’t work. That’s what I’ve been paying taxes for my entire life. This is the first time I’ve ever asked [the state] for something.”

In the absence of a state-sponsored treatment facility in southern Israel, some patients seek help from the Rabbi Firer Ezra LeMarpe Center in Sderot, a nonprofit medical support center that offers a host of treatments free of charge.

According to Liraz Cohen Biton, the center’s social work director, “The number of people applying for fibromyalgia therapy has spiked from zero to 200. A year and a half ago we had a few dozen fibromyalgia patients. Today, we have 250 patients on the waiting list.”

Cohen Biton said that more women are diagnosed with the disease, which correlates with the general statistics of fibromyalgia in Israel and around the world, but noted that “our men’s therapy groups are also filling up. I believe that at least 50 percent of patients come here because of the security situation.”

Still, patients in southern Israel are desperate for government and public attention.

“Those who are familiar with the disease know that patients must receive ongoing hydrotherapy treatments, emotional therapy, and in some cases, medication,” Raviv said. “I shouldn’t have to pay for everything by myself, that’s a lot of money.”

The cost of hydrotherapy treatments is a particularly painful subject for the patients, and some noted that Clalit, Israel’s largest state-mandated health care service organization and the one most dominant in the south, was making it difficult for them to access this therapy.

“Some health care organizations subsidize hydrotherapy treatments, but Clalit, which treats 85% of the south’s residents, doesn’t always approve it, despite the fact that it’s very helpful,” said one patient who asked not to be named.

Responding to the allegations made by fibromyalgia patients, the Health Ministry said in a statement that “budget allocation priorities are periodically discussed in accordance with changing needs. Specific complaints can be addressed to the ministry’s public health ombudsman and the State Health Insurance Commission, and they will be dealt with accordingly.”

A statement by Clalit said that the health care organization “adheres to the health basket guidelines, which state that patients suffering from chronic conditions are eligible for 12 physical therapy treatments. The referral of patients for hydrotherapy treatments follows the eligibility guidelines, as set in the health basket, as well as any professional recommendation. In the event any individual case is brought to our attention, we will examine it immediately.”

The “health basket” is a term used to describe the package of state-sponsored medications and services all Israeli citizens are entitled to under the country’s National Health Insurance Law.

The National Insurance Institute issued a statement saying, “The NII is currently undergoing a process of updating its list of disabilities to add a section for fibromyalgia.” The institute said it was pursuing “a lengthy, exhaustive process of medical discussions alongside a public examination so that we can properly determine the percentage of disability for patients with fibromyalgia in a manner the professionals find acceptable.”

The statement clarified that fibromyalgia and post-trauma are two different diseases. “The medical committees review and determine disability percentages according to the merits of each case. As for the specific cases described in this article, we will have the NII’s chief physician review them,” the statement said.

The NII said it subsidizes immediate mental health care for those suffering from anxiety and patients are eligible for at least 12 psychotherapy sessions without filing a social security claim. The statement adds that NII centers can aid patients through the bureaucracy of requesting further treatment.

Despite the financial challenges they face, Idit Tzedek, a physiotherapist and hydrotherapist who serves as the professional director at Sha’ar Hanegev Hydrotherapy Center, said that the number of fibromyalgia patients coming to the center has increased by the dozens in the last two years.

Tzedek, too, is convinced that there is a connection between the sirens and rocket fire and what has become a phenomenon unique to southern Israel.

“Chronic pain syndromes are known to intensify in stressful situations,” she said, “and I would say that the anxiety over the security situation definitely makes for a stressful life.”

This article was adapted from the original Hebrew on The Times of Israel’s Hebrew sister site, Zman Yisrael.