Been struggling, but I'm a fighter

[SeaPhoenix]

Hi all,

I'm a 25 years old guy, been suffering from fibromyalgia for 6 years now. In those 6 years, I haven't been absolutely - on the edge of ruin - type struggling the whole time, but I've definitely had gaps of time where I was managing better, or worse, or stagnating in my progress to treat and manage it.

I also suffer from comorbidity of fibro with severe depression and severe ADHD. I'm well aware mild depression is said to be a characteristic part of fibro, but I suffered from, and somewhat successfully treated depression and less so ADHD. The ADHD has not really been that detrimental to my overall state. However not treating it better since an earlier stage did contribute, I strongly believe, to exacerbating and developing the severe depression and even fibro. Fortunately, I don't seem to have other chronic or persistent health complications adding to my fight and the complexity of it, although I believe it goes without saying that the fibro alone is enough. Underneath the umbrella of fibro comes more than enough complexity :S

I've come to this forum to get help in navigating the fibro and my journey to reaching a new normal where the fibro is as much in check as possible. I wish I would have joined/reached out earlier. I hope that with time I can also become experienced and successful enough to become a contributing member and help others on their health journey. In spite of the fibro, my life has many positive and fulfilling aspects to share with the forum. Although I took a few more years than most, I'm about to graduate from college with a BSBA in finance, minor in computer engineering from a prestigious institution in the US. I have a supportive and loving family - I live with my parents and have an amazing older sister whom I'm close to. Fortunately, my economic situation, hailing from my family's financial standing, my education and geo-socioeconomic (where I live) predicament is not really a limiting factor in seeking treatment or further detrimentally compounding/hampering my living standards & quality of life upon the daunting negative lifestyle/quality implications caused by fibro. Although I still worry (a lot) about being able to transition into a full-time position after graduating and successfully establishing a career - where I can support myself completely independent of my family's financial support. I love animals, have two loving pet dogs. My girlfriend of long term is a source of sunshine and happiness in spite of it all and she is exceptionally considerate and supportive of my fibro condition. My hobbies are swimming, biking, kayaking, video games (although I try to avoid overindulging) cooking, languages, travel, multiculturalism and many many less established interests - as per the ADHD, I tend to start lots of little projects and lifestyle practices that I fail to solidify and make consistent or finish and renew; perhaps explained also because I have had to significantly modify my lifestyle and hobbies due to the fibro. Before fibro, I used to kickbox, go running, ski (this I still can do but less so).

I hope that this lengthy intro paints a detailed picture of who I am and where I am on my fibro journey, and life outside of/despite it. My first question for the forum is, what are the forum policies on members sharing sensitive individual health information? Such as treatments, medications, more specific and personal information - even interpersonal relationships and the psychological. I didn't see much on this in the forum rules. I am a very open person and happy to share about this, and I would think it difficult to discuss fibro without a considerably exposing disclosure of this type of information. Even psychological details I would argue could be appropriate to discuss because fibro has a large psychosomatic and mental health component.

 

[SeaPhoenix]

P.S.

A fibromyalgia diagnosis has never been officially given to me, but I have done some arguably exhaustive diagnostics and medical consultation to rule out all other possible malaises like Lyme, MS, allergies, etc. Rather, 6 years ago on the onset of illness I got a 'myofascial pain syndrome' prognosis, and a 2-week comprehensive health evaluation done in a Houston medical clinic specializing in mental health and chronic pain resulted in a 'somatic symptom disorder' diagnosis, implying only mental and neuropathic pain. My symptoms do present as fibro though, such as constant dehydration of the fascia, the strong correlation of symptoms with sleep quality and regimen, IBS, muscular tension, fatigue, and pain as a result of this incessant muscular tension which separates and differing from entirely neuropathic pain (which I also have).

Thank you for reading

 

[Jemima]

My first question for the forum is, what are the forum policies on members sharing sensitive individual health information? Such as treatments, medications, more specific and personal information - even interpersonal relationships and the psychological. I didn't see much on this in the forum rules. I am a very open person and happy to share about this, and I would think it difficult to discuss fibro without a considerably exposing disclosure of this type of information. Even psychological details I would argue could be appropriate to discuss because fibro has a large psychosomatic and mental health component.

Hi SeaPhoenix,

Welcome here, and thank you for sharing your story with us.

Perhaps our fantastic moderator, @sunkacola can clarify more succinctly, but we often discuss these aspects of navigating fibromyalgia in depth here in the forum. The use of monikers allows anonymity for those who choose it, so people can discuss what's worked for them or not worked, the impact of their illness on their relationships, and the useful insights that they've gleaned along the way without revealing their own identities or those of other people relevant to their stories. For example, not sharing real names or locations means that life events can be talked about in relative abstract. I hope that helps!

I'll look forward to hearing more from you here. I hope you find value - there's an Aladdin's cave of information to be found in the forum's threads! You can also ask anything you wish, and vent whenever you need to.

 

[JayCS]

Hi SeaPhoenix and welcome "on board"!

Hi all,

I'm well aware mild depression is said to be a characteristic part of fibro, but I suffered from, and somewhat successfully treated depression and less so ADHD.

"but"?: You had your depression before the fibro-type symptoms, you mean?

The ADHD has not really been that detrimental to my overall state. However not treating it better since an earlier stage did contribute, I strongly believe, to exacerbating and developing the severe depression and even fibro.

Do you mean that the ADHD was indirectly detrimental then?

Fortunately, I don't seem to have other chronic or persistent health complications adding to my fight and the complexity of it, although I believe it goes without saying that the fibro alone is enough. Underneath the umbrella of fibro comes more than enough complexity :S

Yeah, fibro is complex, but does vary in severity. May be helpful that your other complications seem "separate". Altho 1-2 studies claimed that 45% of fibromites have ADHD, which looking at the details just means that they measured their brain/fibro fog.

experienced and successful enough to become a contributing member and help others on their health journey.

Don't worry - All questions and thoughts are contributions and help: it's give and take all along.

my life has many positive and fulfilling aspects

Wonderful, that's a great fundament. It helps us all if we all relate and translate to one another, those who have more benefits can try out more, for the benefit of reporting those experiences, whilst we all need help of many kinds.

swimming, biking, kayaking, ...

Some of us still manage some sports, but for many with a more severe form it's all a struggle. A few people seem to be able to "push thru the pain" and evangelize about that, but either they have a rarer sort of fibro that allows that or it's not really fibro.

I hope that this lengthy intro paints a detailed picture of who I am and where I am on my fibro journey, and life outside of/despite it. My first question for the forum is, what are the forum policies on members sharing sensitive individual health information? Such as treatments, medications, more specific and personal information - even interpersonal relationships and the psychological. I didn't see much on this in the forum rules. I am a very open person and happy to share about this, and I would think it difficult to discuss fibro without a considerably exposing disclosure of this type of information. Even psychological details I would argue could be appropriate to discuss because fibro has a large psychosomatic and mental health component.

For your personal situation and that of your family it's important to realize that everything we write on this forum is public and can be found by all search engines, so we are not anonymous, we are pseudonymous. The more detail you give about all areas of your life the more easily all the other details about you can be "found". So I try to keep to sharing all health incl. psychological information and tone down details like my job, even tho they may be helpful to know. The main inappropriate behaviour internally is telling others what to do - evangelizing often occurs when someone so inclined is happy about something that helps them, disregarding that all fibromites are different.

A fibromyalgia diagnosis has never been officially given to me, but I have done some arguably exhaustive diagnostics and medical consultation to rule out all other possible malaises like Lyme, MS, allergies, etc. Rather, 6 years ago on the onset of illness I got a 'myofascial pain syndrome' prognosis, and a 2-week comprehensive health evaluation done in a Houston medical clinic specializing in mental health and chronic pain resulted in a 'somatic symptom disorder' diagnosis, implying only mental and neuropathic pain. My symptoms do present as fibro though, such as constant dehydration of the fascia, the strong correlation of symptoms with sleep quality and regimen, IBS, muscular tension, fatigue, and pain as a result of this incessant muscular tension which separates and differing from entirely neuropathic pain (which I also have).

I'm a bit surprised, but only a bit, that despite high quality evaluation they haven't even mentioned fibro, despite your "self-diagnosis".
Maybe similar to a centre for rare diseases unsuccessfully suspecting Sjögren's and Hashimoto's "behind" my fibro.
Or maybe what they said 6 years ago was preliminary and they or similar people would now admit to it being fibro.
Whatever: This can be the right place for you, our Big Advice Post pinned at the top of the forum helps whatever the diagnosis.
And in my experience it pays to prevent and/or alleviate each symptom separately, incl. groups (e.g. tenseness/relaxation of muscles).

 

[sunkacola]

I hope that this lengthy intro paints a detailed picture of who I am and where I am on my fibro journey, and life outside of/despite it. My first question for the forum is, what are the forum policies on members sharing sensitive individual health information? Such as treatments, medications, more specific and personal information - even interpersonal relationships and the psychological. I didn't see much on this in the forum rules. I am a very open person and happy to share about this, and I would think it difficult to discuss fibro without a considerably exposing disclosure of this type of information. Even psychological details I would argue could be appropriate to discuss because fibro has a large psychosomatic and mental health component.

Hello SeaPhoenix, and welcome to the forum.

to address your concerns: The amount of personal information you disclose is up to you, although because this is an open international forum that anyone anywhere can read we do forbid the disclosure of email addresses, phone numbers, or mailing addresses and other similar information which would make a member's identity exposed. If you wish to disclose specific health concerns, issues with interpersonal relationships, or your own psychological issues without personally identifying yourself and without clearly identifying any one else either, that is fine. Our concern is with the indadvisability of self-identification or exposure of specific details about ourselves on the internet, because that can be a dangerous thing to do in many ways.

So, for instance, disclosing what you or your parent or partner does for a living is fine, but not including the city and state or province in which you or they live, if that might identify them specifically. Discussing your interpersonal relationships without disclosing anyone's name including your own is fine. Medication is fine if you don't disclose your doctor's name or place of practice. And so on. Really, we are open to discussing most anything as long as personal identities and privacy are properly protected.

If you would like to read my post designed for new members of the forum, and that has many ideas on various things you can do to help you manage and navigate fibromyalgia, please check it out. And questions are always welcome.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[SeaPhoenix]

"but"?: You had your depression before the fibro-type symptoms, you mean?

Do you mean that the ADHD was indirectly detrimental then?

Yeah, fibro is complex, but does vary in severity. May be helpful that your other complications seem "separate". Altho 1-2 studies claimed that 45% of fibromites have ADHD, which looking at the details just means that they measured their brain/fibro fog.

Yes, I had clinical depression that was diagnosed and treated for a couple years before any sense of fibro.

exactly, ADHD is indirectly detrimental. my poor time-management skills have lead to increased stress from schoolwork, responsabilites, at work and even at its worst managing daily household chores. When the fibro started, I first got unusually high pain when taking exams that had me really stressed out because I failed to properly study/ prepare for them.
At home, my ADHD even gets in the way of me properly developing and maintaining stress-relieving habits and hobbies well, I feel like I have 80+ hobbies but only a few that I properly continue to do and am adept at whereas the others where projects or interests I started and never properly finished.
its good insight to hear that the many fibromites who have ADHD and the correlation therefore may be the other way around - causation and not correlation - due to the fibro fog. I had previously heard of the high proportion of fibromyalgia patients with ADHD, and thought there was a direct causation therein, such as with ADHD and anxiety disorders: where ADHD patients are much more likely (as compared to the gen. population) to develop anxiety, depression or other similar disorders, suspected to be influenced due to the behaviours impairments in functioning caused by ADHD.

 

[SeaPhoenix]

@ Sunkacola,

Thanks for your reply, sounds like pretty straightforward guidelines.

 

[JayCS]

fibromites who have ADHD

I've only heard of few who like you have had ADHD diagnosed before the fibro. And for the other cases we (and most docs apart from above researchers) would not call it ADHD at all, we just say brain fog or in this case fibro fog. But actually comparing is helpful, because similar techniques like making lists, using alarms, tokens for extrinsic motivation etc. can be helpful for both. Interesting'd be if the supps we use for the fog would help and even are used by non-fibromites with ADHD... Quick search: yep. Nothing new for me there! (Inositol for agitation...)
I'm interested: What do you do to get your ADHD under control, where do you look for new ideas? Attention's not directly my problem, but I'm pretty hyper - my wife calls me ADHD, which does sometimes get in the way of my self-care, so I can very much relate!