Pain in My Soul: A Retrospective View of What I Discovered in Life

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Beyond analgesics, some had physiotherapy; however, these participants had negative perceptions of the discomfort of the treatment and a lack of knowledge and empathy from the practitioners; similar comments were made about massage therapy. Apart from yoga and tai-chi being too strenuous , other alternative therapies received almost entirely positive endorsements for symptom and mood improvement, and a lack of side effects.


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The only drawbacks to such therapies were sometimes the prohibitive costs and the difficulty of finding practitioners who were willing to work with people with FMS. Finally, four of the participants had been referred to a pain clinic and described it as an incredibly beneficial experience. Many of these participants reported fighting for pain clinic referral, echoing the battles for medication described above. Those who had persisted and been successful in gaining a referral described a service which offered expertise and support in pain management and vital links to other services.

The pain clinic was seen as an option to bypass obstructive GPs and get advice regarding dietary changes, relationship support and many other problems associated with the actual lived experience of chronic illness beyond medication and exercise. The pain clinic represented the closest approximation available for most participants of a specialist centre for FMS. Four of the participants independently questioned the absence of such a facility for FMS and linked this to the status of the condition alongside others. The implications of the study of Briones-Vozmediano et al.

The authors suggest significant modifications are required to improve clinical competencies and doctor—patient relationships in the form of coherent, multidisciplinary strategies, health professional training and nurturing improved therapeutic relationships. One positive conclusion from a United Kingdom perspective is the reference to the use of pain clinics within the United Kingdom as offering interdisciplinary expertise in pain management.

THE SOUL SEEN – Retrospective

This is undoubtedly supported in this study; however, the validation received at the pain clinic is often in contrast to other interactions with health professionals. Differences in medication beliefs and adherence in chronic illness were investigated by Horne and Weinman , who highlighted the cost—benefit analysis undertaken by patients when considering and managing medications and their adverse effects. Decision-making will form part of a large-scale survey to follow this study, focused on the experience of available FMS treatments.

Beyond the healthcare experience, the main sources of support for the participants were family and friends. The impact of FMS on friendship group activities was marked, and in some cases, FMS had completely restructured the support network. The sample for this study was drawn from local support groups and the majority of those who were able to regularly attend the meetings stressed the key benefits as helping with isolation and meeting people who would be able to understand especially soon after diagnosis.

The nature of the condition and cultural norms regarding membership of support groups Grande et al. The incomprehension of those who do not understand led to the breaking of bonds and a desire not to share experiences with others. Possibly due to the nature of the sample, the benefits of peer support were highly apparent and echo the work of Sallinen et al. Daraz et al. This was apparent in a lack of comprehensive information on most existing websites, while higher quality websites often provided information with technical language inappropriate for the general population.

Providing accurate and reliable online information not only empowers patients to make informed decisions about their own health when they might not be comfortable or able to discuss with health professionals directly Sillence et al. FMS also compromised the functioning of the family. Participants understood the strain their FMS symptoms placed on others, and this awareness caused distress:.

Participants struggled to juggle family demands and the needs of their condition. For example, although they believed it would benefit their symptoms, participants found that making even mundane changes to their diet was difficult to achieve due to financial constraints or the daily reality of family life.

The physicality of parenting was another challenge, especially for those with younger children, for whom FMS sometimes acted as a barrier between them and their child:. When discussing the onset of FMS, most of the participants described a traumatic incident later in life; however, a few of the participants described particularly problematic childhoods, including abusive relationships. Such experiences could dramatically alter the relationships within the family across the generations. Many of the participants discussed the hereditary nature of FMS and described close relatives who had also had chronic pain conditions.

Cudney et al. The current findings provide detailed insights into how and why this occurs, demonstrating the day-to-day impact on being able to parent and maintain intimate relationships in the context of FMS. The experience of FMS appeared to create negative self-perceptions in these participants. Some also felt they were unable to offer the necessary level of support and care for children and were impacting negatively upon their development as a result.

A focus group study by Arnold et al. The intense and cyclical nature of FMS symptoms can make regular work incredibly difficult, and this appeared to have had a severe impact on the identity and self-esteem of these participants with FMS:. I expect being best okay? Work was absolutely impossible for many of the participants and for the others, symptoms and medications dictated the extent to which regular work was possible. This created reliance on others, financial difficulties and guilt of not being able to provide for their family:.

The financial reality for many was the need to accept benefits but this damaged the pride of those used to working. The invisibility of the condition and an ongoing public discourse in the United Kingdom regarding the credibility of disability benefits can lead to stigmatisation of those with FMS. Garthwaite describes how media language can be employed to stigmatise those who receive sickness-related benefits as unwilling rather than unable to find appropriate work.

Such rhetoric from the media and politicians not only fuels public misunderstanding but also may reduce the openness of employers to people with disabilities. These findings are in line with the study of Bossema et al. The participants described needing work which is paced in such a way so that energy may also be conserved for time away from work. The relationship between these participants and their FMS developed over time with changes to both the status of the condition and the individual.

A discord between body and mind was alluded to by several of the participants. The difficulty that many participants had in pacing activities to minimise the likelihood of flare-ups was based upon a feeling that they had to make the most of times when the symptoms were less intense. This natural reaction characterised the daily experience as an ongoing fight with FMS in order to maintain some form of agency.

It seemed an unwinnable fight, which understandably led some to grieve the life they were meant to have and feel a profound sense of unfairness in their position:. For those further along the illness trajectory, the concept of acceptance was occasionally raised:. I think the biggest part of it was acceptance and … I only accepted it last year. So what … seven years fighting? The process of gradually accommodating to FMS often took the form of major adaptations to lifestyle with some adapting their home including converting rooms downstairs , two needing crutches or walk-sticks and four using a wheelchair.

Three of the participants had clearly experienced times when acceptance was far from their minds: the hopelessness and burden of the excruciating symptoms and psychosocial strain had led to thoughts of suicide. Everything had just … nothing mattered. Despite occasional accounts of a deep sense of hopelessness, the interviews were characterised — in the gestures and the tones used — by pragmatism in the face of many of the barriers and difficulties these participants had faced.

While the experienced pain and FMS generally was often referred to as separate and uncontrollable using a biomedical model which reduces the accountability of the person with FMS , participants also referred to the interconnectedness of the mind, body and environment in symptom progression and management. The Cartesian dualism and biomedical model are thus enlisted and then rejected in these complex and ambiguous and conflicting understandings of the FMS experience.

This study demonstrated the immense disruption FMS had upon the lives of these participants, the challenges faced in accessing treatments and the inadequacy of many treatments. Pain and fatigue seemed at times to dominate their lives. Pain was extreme and idiosyncratic but would be misunderstood by others largely because of its permanence. These findings are replicated in more recent studies of FMS Sorensen and Christiansen, and of chronic pain more generally Stenner et al.

In our findings, fatigue could be totally debilitating, and the personal benefits of activities were constantly balanced with their negative consequence. Participants in previous studies e. Two themes outlined in Crowe et al. Frustration and depression are commonly described consequences of these disruption of activities, goals and aspirations in previous work e.

Carel , however, asserts the ability of individuals to set fluctuating levels of illness to one side, in order to carry on as the pain recedes despite the knowledge that the symptoms will flare-up again. In this way, consequences were usually ignored by the participants of this study in order to make the most of the better times. Thus, most participants still seemed to be fighting FMS, and others were starting to accommodate it in their lives, but few were even considering accepting it. Many had been forced to withdraw from work and from large parts of their social and family life as previously observed by Wuytack and Miller Most wanted to stay in work but described structural barriers and interpersonal challenges in so doing, and those who had been forced to leave did so reluctantly and grieved the losses this created.

Similarly, our participants had resented and railed against, rather than accepted, these enforced changes in their lives. Opportunities to continue employment may well be controlled by issues outside the individuals control such as the need for adjustments to workload, hours and tasks. These accommodations require the help and understanding from management and colleagues and although complex, this study is helpful in re-directing the question of employment for people with FMS away from a focus on individual disability to a consideration of how organisations might support the desire to continue work.

The chosen method produced rich data which has offered insights into the experience of FMS, which both support and extend previous findings. They also present a novel and helpful view of treatment experiences within the United Kingdom, which will be expanded upon in large-scale surveys.


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Although many of the interviews touched upon emotional and painful experiences, the participants described the study experience as useful and were extremely positive that their voices were heard and were included in research. A common perception was that FMS research especially in the United Kingdom was lacking, which was seen as further evidence of the diminished position of FMS relative to other conditions. The sample were drawn from local support groups, so these may be individuals who do not perceive they are receiving sufficient care from their family and healthcare providers, and in some cases, the participants were active in attempting to create the expertise and support service within their group that they felt was lacking.

Many from the group were unable to work and so the sample may suffer more severe symptoms than the general FMS population. Furthermore, the participants had the confidence to participate in such a group so may be a more vocal, unsatisfied and symptomatic sample than the broader UK population with FMS. It may be argued that the issue of authenticity itself is a product of a sample of whose search for recognition of their illness meant they were more likely to participate. The issue of the invisibility of the illness was keenly felt in this study, similarly to findings made by Lempp et al.

The incongruity between what is felt by the individual and seen by the outsider forms one part of the common thread tying the accounts together — that of the authenticity of FMS within UK culture.

“Your Suffering Will Be Legendary, Even in Hell!” – 25 Years of HELLRAISER Retrospective

Difficulties in doctor—patient relationships often began during the long wait for diagnosis, as reported elsewhere. Accurate diagnosis is important; however, the doctor—patient relationship is a long and potentially problematic one, especially in the context of under-developed understanding of the condition, varied treatment paths, many of which prove unsatisfactory, and financial constraints on providing more popular options. Our study highlights how these aspects contributed to a long-term disruption to the expected healthcare experience, resulting in growing mistrust of the medical profession, indeed, a mutual loss of trust Juuso et al.

For the person with FMS, diagnosis is a step in a process of discovery about the condition and living with it, which gradually unfolds and is never complete Adamson, Navigating this process involves drawing on a range of resources, in which medical advice plays a vital, but not by any means the only, part Madden and Sim, Participants in this study perceived a lack of expertise and resource within the NHS which forced many into difficult decisions regarding private healthcare. The sense that for many patients the onus was upon them to repeatedly demand satisfactory treatment for such a debilitating condition was profound and suggests professionals could consider taking a more proactive approach to FMS.

The authors suggest that researching treatments, with the concomitant energy and skills required to access or to demand them, should not be the responsibility of a patient with a diagnosis of FMS. Our participants were all drawn from online support groups and had, therefore, taken it upon themselves to seek out the support they lacked elsewhere.

Raymond and Brown discussed the importance of support groups in coping with diagnosis, and Madden and Sim described the role of the support group as an ongoing co-creator of FM diagnosis. Somewhat in contrast to certain previous findings e. Crowe et al. The data suggested that an important part of new relationships was the sense of understanding and validation which was lacking elsewhere. Using Leventhal et al. In a recent study by Ruiz-Montero et al.

Kool et al. Such findings underline the very social nature of this phenomenon and the multiple layers involved in the construction of illness authenticity. The contested status of the condition has led to a social construction of FMS which negatively impacts the experience of those living with it Lempp et al.

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The reframing of FMS would require both validation of the condition by health professionals and increased public awareness. Improving the experience for people with FMS by challenging issues of illness status is a monumental societal task; however, the lived experience of FMS could be improved by a proactive health service which acknowledges FMS and improves access to interventions which can alleviate symptoms.

Acknowledging FMS means admitting the shortcomings of medical knowledge Werner and Malterud, , accepting and valuing the experiences and expertise of people with FMS Donaldson, , and supporting and empowering them Kool et al. Improving access ranges from signposting available treatments to research and funding to enhance what is currently available.

Research into improved or the creation of new online resources which better balance accessibility with content may also be of benefit. Currently available interventions which could benefit people with FMS — as described by these participants — are clearly not being made available to patients or are only accessed by those who have the skills and energy available to fight for them, which places many people with FMS at a distinct disadvantage.

The findings of this study are being used inform a national survey to quantify the experience, perceived effectiveness and adverse reactions to treatments currently available, with the intention of designing a new user-focused intervention.


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National Center for Biotechnology Information , U. Journal List Health Psychol Open v. Health Psychol Open. Published online Sep 7. Author information Copyright and License information Disclaimer. Sheffield Hallam University, UK. Email: ku. This article has been cited by other articles in PMC. Abstract This study explores the life and treatment experience of people in the United Kingdom with fibromyalgia in order to inform the development of treatments which are both effective and acceptable to users. Keywords: chronic illness, fibromyalgia, interpretative phenomenological analysis, qualitative methods, treatment.

Introduction Fibromyalgia syndrome FMS is a chronic pain condition which has a global mean prevalence of 2. Methods This qualitative study explored the lived experience of 14 people with FMS with a particular focus upon treatments and interventions they had tried or been offered. Participants A total of 14 participants were purposefully recruited in the South Yorkshire area of the United Kingdom.

Kirsty encounters a young girl named Tiffany, who has an affinity for solving puzzles, and they must join forces in stopping Dr. Her dear evil stepmother is back and wanting to seek revenge on her stepdaughter, as well as serving her new God and Master: Leviathan. Leviathan sure if a jerk…for a deity that looks like an inanimate object Itself a giant version of the Lament Configuration. Of course. And the Cenobites learn a thing or two about humanity — their own.

The sets were larger, the story was more in-your-face, the gore was upped tenfold, and we got two heroines for the price of one. The uncut version of the film is definitely the one to check out, including the extremely bloody and gruesome death scene involving a patient who sees insects and maggots all over his flesh and carves at them with a straight-edge razor the old-school one that barbers still use.

His blood-shedding is the catalyst for bringing Julia back, which it does. Another recommended viewing. It is certainly not the biggest cinematic train-wreck, but there are so many cringe-worthy moments that you have to wonder what the hell the studio executives were thinking about. You know that they had their hands all over this from day one, and it shows.

Venturing away from my mini-rant, Hell on Earth features a new heroine named Joey, an intrepid journalist who is stuck doing filler stories for her television station. Confused and frightened by what she has seen, Joey sets out to discover more about the strange box the victim was holding, and gaining more information from the woman who came in with the victim: Terri.

Thanks, jerk, for helping unleash Pinhead into our world and turning him into your average slasher.

THE SOUL SEEN – Retrospective

Two-Minute Review: This movie is thoroughly entertaining if you take your brain out, safely store it in a jar somewhere, and for the full running time let your suspension of disbelief be your best friend. If you try to view it as a serious horror film, you are going to have a miserable time. In terms of continuing the Hellraiser saga, there are some interesting bits: we learn a bit more about Elliot Spencer Pinhead and his origins, we see Kirsty — in videotape form — warning about evils of the box, and we learn that Pinhead is able to distance himself from his human counterpart, even in Hell and on Earth.

Other than that, you can tell the suits at the studio had their dirty, grimy money-making hands on it, turning what could have been a pretty decent movie that had a pretty good script into your average, boring pseudo-slasher flick. Oh, and as if J. Favorite Scenes: Pinhead scaring the shit out of J. Paul Merchant.

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As some intergalactic police officers arrest Dr. Going back to our modern times, John Merchant is visited by a mysterious woman named Angelique, who has her own past with his ancestor Phillip LeMarchand and the infamous Lament Configuration. Did I mention that Angelique was a Princess of Hell? There is a workprint version of the film that lots of fans swear by because it has lots of interesting scenes that were left on the cutting-room floor by the studio execs.

You can see clips of it or the whole workprint version in full on Youtube, and some fans spent lots of time turning it into a watchable working film. Favorite Scenes: The creation of the Twin Cenobites, Pinhead and crew arriving in space through the puzzle box, any scene with Angelique, the Hellhounds, and the final 10 minutes of the film, where we see out space carrier turning into one huge Lament Configuration. Are these bizarre visions really happening, is it a form of psychosis, or is it something much worse?

And who is the strange pale man with the pins in his head? Two-Minute Review: One of the better sequels to come from the Hellraiser franchise, Inferno is a pretty good crime-thriller mixed with some horror elements. Craig Sheffer helps move the movie along and keep it flowing steady thanks to his portrayal of the tortured, tough, badass detective, Joseph Thorne. I would love to see it sometime. The Wire Twins are some of the more imaginative Cenobites to come out from the franchise, and their appearance in the film is a welcome sight for those trying to wash away the memories of those lame-ass Cenobites from Hell on Earth.

At least Bloodline has some pretty cool ones. Two-Minute Synopsis: This is not one of the most easily remembered of the Hellraiser series, or one really loved by fans. But you have to give credit to the filmmakers for at least bringing one of my favorite characters back to the Hellraiser universe: Kirsty Cotton! Yes, Kirsty is all grown up, quite the stunning beauty, and married to a nice guy named Trevor. Trevor is really an asshole that tries to come up with various schemes of getting rid of Kirsty for her inheritance, even if it means murder. Not the most original idea for a film.

Then again, he did give her the puzzle box as a birthday gift…. Two-Minute Review: From what I remember reading about this film, and the next two sequels, was that the script was not written as an intended Hellraiser vehicle, but for a standalone film. For sure Deader, our next sequel in this retrospective, was a standalone script that was later changed to be included in the Hellraiser franchise, but does not feel like a Hellraiser film.

Doug Bradley does what he only he can do best as Pinhead, and the new Stitch Cenobite is creepy. Not the best of the franchise, not the worst, but a forgettable entry. Our heroine in this film is Kari Wuhrer, who has been doing genre work for quite some time. Kari plays a journalist named Amy Klein, who will go to the extremes to get an exclusive take that, Joey from Hell on Earth!

Her editor gets a strange and shocking tape featuring a young woman who seemingly comes back from the dead with the help of a cult leader named Winter. Winter runs a cult called the Deaders, who are a group of people who have harnessed the powers of Hell to resurrect themselves time and time again, essentially cheating death.

Amy starts to follow the Deaders and becomes a bit too embroiled in their world. Trying to save her life and sanity, Amy encounters Pinhead, who offers her an interesting proposition. Things get crazier from there. This is one of my favorite sequels from the franchise, and the fourth one that I remember seeing I saw all three back-to-back a few years previously. Oh, those were the days. Kari did a pretty decent job in this film, but the stand-out star is Paul Rhys as the charismatic Winter.

Pinhead barely makes an appearance in the film, with a few brief random scenes sprinkled throughout, and the somewhat anti-climactic ending. Definitely a fun one to watch on a weekend with friends. Number of Lament Configurations:.

Pain in MY Soul

Two-Minute Synopsis: Train wreck galore coming up!


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