Professor Oni and professional model Miss Fifi Alexis offer an overview of fibromyalgia in this first-part, 13-minute clip. Oni introduces the topic by highlighting general symptoms; and Fifi shares her personal experience with the disease, noting especially its physical and psychological effects. They also discuss how Fibro affects her modeling and suggest ways to use mental power in response to such physical pain.
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9 Responses to “What is Fibromyalgia?”
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I also have fibromyalgia, and have had it since I was 16. I just wanted to comment here and say that it’s really important to know that fibromyalgia can present itself VERY differently from patient to patient. That’s one of the reasons why it can be hard to diagnose, hard to study, and hard to treat. It’s no longer being seen as a condition primarily for middle-aged and above, there’s plenty of younger people who have it. My diagnosis was easier because my mother has it.
While my doctors consider me to have a fairly advanced case of it, and my pain is very difficult to treat, my pain doesn’t sound to be much like Fifi’s; in some ways yes, some days yes, but we’re different. Professor Oni also mentions that the pain tends to manifest in joints, similar to arthritis, as well as other spots, but a number of patients have widespread tenderness which can make BDSM difficult. For example, my upper arms do not hurt as I sit here, but if you poke my upper arm it is terribly painful. For me, personally, pinpoint pressure (for example, from fingertips as a strong hand would grasp my arm) is the worst. Diffuse pressure can be much more tolerable. It’s important to ask your partner were their tender locations are, and to keep it in mind.
Also, many fibro patients are supersensitive (in bad ways) things like strong-smelling perfumes/candles/oils, itchy prickly ropes, etc.
Thank you for the input Dangerous Lilly!
i won a one-month free membership to kink academy online and have enjoyed watching most of the videos. i was really excited to see a fibro video on kink academy until i actually saw it. i’m so outraged by what i saw that i thought i should post here and as a comment to the clip.
i’ve had fibro for many years now. i agree with the other commenter to the video that the condition has a variety of manifestations. as was her experience, my pain is not like fifi’s either. the one-sided, poorly researched approach to fibromyalgia presented in the video is a disservice to those who have it, our care givers, our friends and family and our play and life partners. i feel so strongly that this video is a misrepresentation of fibromyalgia that i hope no one i know watches it.
while i liked some of his other videos, professor oni clearly has no clue about fibro and fifi doesn’t seem to be very educated on it either, aside from her personal experience. many of us who have fibro become “professional patients” and end up knowing far more about it than many of our doctors. i’m just as likely to believe what some folks on the fibromyalgia and kink forum on fetlife have to say about my concerns as i would my rheumatologist. when it comes to my other docs, forget it; they’re mostly clueless. for professor oni to say that you can take control of your pain and your life and not let fibro stop you shows how little he knows about the condition, how you treat it and how to get it under control. i’m not sure what happened to fifi to make her more functional (it sounds as though she only struggled for 5 months while many of us struggle for years or even the rest of our lives), but she seems to be much better which is great. however, just because she can function and work now doesn’t mean that everyone can regardless of how much we may want to return to our careers.
fibromyalgia is a serious condition. fifi tried to stress that it’s not a condition you’re going to die from without mentioning that the suicide rate of people with fibromyalgia is significantly higher than in the general population. there’s been much press about this lately with varying figures from different studies putting us at least 10 times more likely to commit suicide. i personally worked on an assisted-suicide plan for two years when i was at my worst with the full knowledge of my doctors and therapist. as someone accustomed to grabbing life by the balls before i was cut down by fibro and chronic fatigue syndrome, i can assure you that i worked my ass off to get to where i am today. to say that i could have just taken charge of your body is pure ignorance of the condition. i am so much better than i was, yet i still wasn’t able to go out four consecutive days three weeks ago without crashing. i’m hoping to finally start going out again this week, but at a much more gradual pace, building up again for the umpteenth time. unless you have fibromyalgia or some other chronic condition, you can’t know the emotional devastation and thoughts of suicide that come when you think you’re able to try to have some semblance of a quality of life worth living only to have it taken away over and over again. and that’s not even considering the grieving over the full lives we used to lead.
this video is so misrepresentative of fibro and offers so little valuable information, it really should be removed. perhaps someone who is educated on the ins and outs of fibro and HAS fibromyalgia could lead a panel discussion of people at various stages with various symptoms. there is an excellent fibro and kink group on fetlife. perhaps kink academy could get in touch with those of us who live in the boston area and we could put together a video series that is both factually and experientially accurate and represents a variety of manifestations of the condition.
*fyi: it took me at least three times as long to write this as it would have before fibro. my writing often suffers from being less clear and to the point because i just can’t do it anymore. i’m now known for writing epic emails. it’s just one of my many symptoms.
@playgirl – I understand your response to the video, and the one video clip (and the others that will come in the series) come from the same perspective as all of our videos…each presenter offers their own experience which is not mean to be an end-all be-all statement on the subject.
We look forward to offering more information (both academic and personal perspective) on Fibromyalgia as well as other health issues, but again, it is impossible to offer ALL information and ALL perspectives and ALL experiences in a 10 minute clip. Their experiences are valid, and so are yours.
I would love to feature a panel discussion or other individuals who would like to share Fibro info & experiences, if you or anyone else you know would like to discuss shooting some video content please fill out the educator form at http://www.kinkacademy.com/home/educator-application/ and I’ll get back to you asap.
Thanks for taking the time and making the effort to share your thoughts :)
@dangerouslilly thank you for sharing your experience with Fibromyalgia and offering both your perspective and additional information :)
I’ve only known a small handful of people who are afflicted with fibromyalgia. They all share a common insufferable pain and struggle with intense depression, which can lead to contemplations of suicide (as Fifi mentioned in this video and Play Girl has also pointed out). Amongst the few people I’ve known with this condition, the efforts to cope have resulted in various approaches. Meditation, constant slumber and rest, attempts to embrace the pain and efforts to mask it with medication are a few of the tactics I’ve witnessed and, like the condition itself, the results have varied wildly.
I do hope more people step forward to offer more insight to this condition here on Kink Academy. Thanks to everyone who has shared their experience and knowledge, thus far.
@Playgirl,
I very much appreciate your perspectives and comments. Fifi and I were ofering one prson’s perpective and expereince. Our goal was not to define fibro, but rather to offer her individual story and how she deals with it.
I do like your idea of a panel and suggest you complete a presenter’s application and submit a proposal to Kink Academy for consideration.
Exactly, I was not trying to speak for all fibro patients and that was not the intent of the video. I was asked to give my story. And, to correct playgirl, I did not only suffer for 5 months, the 5 months was the time in which I finally started to document my symptoms and try to understand what was going on with my body. I have been dealing with fibro pain since I was a teenager (I am 25 now). I am sorry if this piece offended you, that was not my intention. I just wanted to show what it is like for myself, not all fibro patients.
My Master and I both have fibro and neither of us object to this video at all. It’s obvious that it is an account of Fifi’s experience. There’s no way to comprehensively cover any topic, much less something as complex as fibro, in 15 minutes. We both appreciate that this video even exists.
If you still are interested in people for a panel discussion about fibro, we live about 3 hours out of Boston and would be happy to take part.