Newly Diagnosed

[seawarrior]

Hello everyone, this is the first time I've used this forum but I'm looking forward to getting to know people through it. I was just diagnosed with fibromyalgia last Wednesday, but it wasn't really a surprise to me as I've been seeking answers for my pain and fatigue for a long time.

A little about me, I'm twenty-two and have experienced persistent pain and fatigue since I was twelve after severely fracturing my ankle and needing emergency surgery. It's difficult for me to remember the exact progression of my symptoms since my memory noticeably worsened around this time, but eventually I submitted to the knowledge that the pain was not going to go away. Since I was so young people didn't really take me seriously, and my parents and doctors essentially agreed I was over-dramatic and my symptoms would resolve themselves if I tried harder to exercise and live a standard, energetic life for a person my age. I attended physical therapy repeatedly, but was never given any sort of evaluation for why I was in so much pain. I never let myself assume that I had any sort of disorder or disability because I thought that would be insensitive to people with "real" pain issues. I eventually asked to see therapists to help with my suicidal ideation, but these sessions were largely ineffective since I wouldn't mention that the primary source of these thoughts was the pain I was in. When I was eighteen a therapist was worried by how exhausted I always was and recommended I be evaluated for fibromyalgia. My primary doctor did not evaluate me properly, and decided the pain I was in was not severe enough to be fibromyalgia, and resulted from depression instead.

Once my original evaluation went poorly I went back to thinking I had no right to believe I may have a legitimate pain disorder, and figured if I got my depression under control it would all disappear. Of course, since the depression was caused by the pain this did not work. However, while seeking psychiatric treatment I was diagnosed with ADHD and autism spectrum disorder. Understanding these disorders and how they impact me has radically improved by mental health and general well-being, I've been able to maintain jobs now and attend community college online, but the pain has still caused a lot of hopelessness. I eventually decided to try for another fibromyalgia evaluation after a friend with similar symptoms was diagnosed. The rheumatologist said I definitely have fibromyalgia, and recommended some methods to improve the pain and fatigue. I see them next month to decide on more "long-term" solutions since I also have joint inflammation they need to evaluate.

I feel like since I've had this disorder nearly half my life, I've gotten practiced at enduring the pain and fatigue and working through it. What mainly distresses me now is the hopelessness. It's really hard to imagine that I'll be able to experience an independent adult life while juggling the difficulties that fibromyalgia, depression, ADHD and autism all present to me since I have times where I just feel so drained and distressed I'm almost entirely unable to function and don't feel like my life is worth living. There doesn't seem to be much empathy I can expect for any of these conditions, so I feel like my only reliable sources of support in the near future will be myself and whichever understanding doctors I can afford. Since I was so young when this began, I never had the time to set up plans for my adult life or even an effective support network, and I feel like I developed a really adverse sense of self to push myself to work even when I felt terrible.

I spent a long time thinking the pain was something I was subconsciously causing, and almost like a punishment I deserved. It seems really daunting to unlearn this idea and instead believe I'm deserving of support, but that will probably be necessary since I've been recommended to reduce stress and my current workload makes me feel like a network of live wires. I'm unsure I'll be able to use medication for pain management, as I've already reacted poorly to some of the types that are used for depression and anxiety and will have to find something that doesn't interact with my ADHD drug, which I desperately need to get my schoolwork done. I'm assuming the most effective interventions for me will be pushing myself to exercise and learning to form a more positive outlook on life and manage my responsibilities in a way that causes me less stress. I guess I'd just appreciate encouragement since right now psychological improvement and social support, and the courage to even ask for it, seem like impossibilities. I've had a lot of mixed emotions in the days following my diagnosis, and I've realized part of that is because I'm still grieving all I didn't get to experience as an adolescent and having to accept that finally receiving a diagnosis isn't like waving a magic wand that will make all the hurt vanish. There's still a long road ahead of me and that's a difficult knowledge to live with since I feel like I've already been more endurant than what's fair throughout the last decade.

Sorry for writing such a long post, I really appreciate anyone who takes the time to read it.

 

[Drtohelpfibro]

Sorry it took so long to diagnose
Very few pediatricians know much about fibromyalgia to be confident to make a diagnosis
There is a comprehensive approach and no one thing by itself is going to help
I’m a physician with a strong interest in this area of fibromyalgia
You might be surprised that there is a connection between fibromyalgia and adhd where about 50% with Fibromyalgia have adhd. This with higher fibromyalgia scores are 10 times more likely to have adhd
Treatment of adhd can cut fiq-r scores in half
Many with adhd also have rls so identifying and treating that is important as well.
Let me know if you have any questions

 

[sunkacola]

Hi seawarrior and welcome to the forum. We can all relate to thing you are saying here, and we are here to help you and to support you.

 

[JayCS]

You might be surprised that there is a connection between fibromyalgia and adhd where about 50% with Fibromyalgia have adhd. This with higher fibromyalgia scores are 10 times more likely to have adhd Treatment of adhd can cut fiq-r scores in half. Many with adhd also have rls

Wow, now that it is new to me and very interesting - thank you. But "new" often means: An idea with too little supporting research..., often jumping to conclusions. The two inter-related studies in "Pain Medicine" (Sep18) claim: Using modern FMS-criteria, the amount of adult fibromites with ADHD has gone up from 25% to 45%. Adult ADHD means a lot less H than in kids. So mainly inattentiveness, but hyperactivity is reduced to restlessness. A physical connection possibly being dopamine dysregulation, a psychological one being that childhood Trauma can lead to ADHD. So trials with pramipexole (a dopamine D2/D3 agonist) for fibro-pain etc. and methylphenidate (Ritalin etc.) for concentration, energy, and mood seem to have been successful. The main study however admits "that a screening questionnaire was used to identify adult ADHD, and future studies should include a comprehensive clinical assessment by an expert clinician for confirmation of the presence of ADHD." (The study has been done in a pain clinic, without ADHD-experts.) This is backed up by the observation "Of these, 7.27% indicated a previous diagnosis of adult ADHD, with a median (IQR) duration of ADHD diagnosis of seven years (two to 10 years)." No asking if someone had ADHD as a kid! And if you look at the questionnaire used = World Health Organisation Adult ADHD Self Report scale v1.1 (ASRS-v1.1) you see that inattentiveness is enough for the diagnosis ADHD there. So what the study should really only claim is that fibro fog and ADHD have "shared symptoms of impaired cognition", which may not be that momentous, but I do think that this can help to begin to understand & treat fibro fog better, for those who are OK with meds/'drugs': with pramipexole or methylphenidate. Muscle tension and stress may be further shared symptoms.
(My adopted grown-up son without FMS was diagnosed with ADHD (attention deficit disorder with hyperactivity) & HFA (high-function autism) as a child, so I am very familiar with the diagnoses. I am sort of hyperactive LOL, but have no brain fog...)

 

[sunkacola]

You might be surprised that there is a connection between fibromyalgia and adhd where about 50% with Fibromyalgia have adhd.

I kind of doubt that, and would want to see the scientific studies that show that before I would believe it to be true. Please quote your sources.