Anyone had experience improving RSD? - CHADD's Adult ADH...

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Anyone had experience improving RSD?

If-love-were-all profile image
If-love-were-all

My 30 year old daughter with ADHD has extreme sensitivity to rejection and an intense fear of failure. She has great ideas and never implements them. If she thinks she's being criticized by those close to her she can attack and criticize them ruthlessly. She sometimes feels intense physical pains I think may be triggered by RSD. Has anyone had any success treating this unhappy disorder? Kindness and support are things she has from us, but it isn't enough.

14 Replies

Im sorry that both she and you are dealing with this! ADHD really does impact the entire family!

I’m a 33yo female with ADHD and RSD, but haven’t quite figured it out yet! I do know that for me, with the proper treatment, medication, dosage, etc, it has helped me a lot with the self-control and emotional regulation. I went through at least 6 or 7 medications, and my only issue now is that it doesn’t last long enough in the day, but I’ve “maxed” my prescriber’s allowed dosage of 40mg/day on Adderall. So I’m looking into foods, supplements, hormones, etc. that may be preventing effectiveness.

Please know from an ADHD/RSD perspective, we know we have this, we know when it’s happening, we know it impacts others, we don’t feel we have control, and we hope you never give up on us! Shame makes it worse. Empathy and compassion help! It’s a rollercoaster, and we’re always trying!

Much love and support for both of you!

Colorado387 profile image
Colorado387 in reply to Gem1n1

That is awful your prescriber is cutting you off at a specific dose, without any medical reason. The FDA limit is arbitrary and it only means they didn't study it higher, not that it is bad for you to go higher. Dr. Dobson said 40% of people need higher than the FDA approved amount to see results, if I remember correctly. I was on 40mg XR with 20mg IR for the okay few years (and actually 30mg IR before the new Dr adjusted it down - for 6 years, I believe). My meds became less effective the past year of so, so I'm in the middle of the experiment phase, which I hate lol.

I hope OP's daughter has tried meds though, and I hope you can find a Dr who doesn't arbitrarily cut their patients off at ineffective dosages!

Gem1n1 profile image
Gem1n1 in reply to Colorado387

Thank you! I completely agree and am searching for new doctors who will treat me as a unique individual! It’s proving very difficult!

I even asked if my PCP would treat my ADHD, since my psychiatrist left the practice, and she said no. Of course, my PCP also said “I didn’t seem the type” to have ADHD prior to my diagnosis... So lack of education in our healthcare system has absolutely impacted my quality of life.

Their reasoning for the limit was based on height, weight, etc. - nothing to do with my brain or ADHD symptoms/severity.

Hi Gem1n1, thanks for the kind reply. May I ask if you have found satisfying work that works for you, and what that might be? Also have you found that your relationships have become more stable as you have become aware of and more successful in managing the RSD?

I’ve actually been unemployed since June 2020 due to Covid and struggling to land a job, regardless of the many interviews and job applications.

In the beginning of my job search, I was applying to jobs that I thought I’d enjoy doing, but wasn’t getting interviews because they were in a different industry. I have a BSME and MBA with 9 years experience in engineering design, manufacturing supply chain, and LEAN (specifically aviation).

I would change jobs almost every 2 years (within same company, different locations), which I liked because I was doing and learning something new. Desk jobs were too boring for me. Manufacturing (specifically operations, materials management, etc) was high-paced, and every day had its own unique challenges, so I really enjoyed that, and now trying to find something similar. I’m currently looking in areas outside of my state that have more job opportunities for my background.

As for my relationships with my family - I still feel very misunderstood by all of them, knowing they are all well-intentioned. They do not understand my unique experience & struggles both undiagnosed/untreated and diagnosed/treated, and I’m having a hard time reaching them to help them understand. So sometimes I just give up. I feel the only way my family and I can really move forward is if there was “family ADHD treatment” where everyone was counseled on how to support their sibling/daughter/etc with ADHD. But it’s too late for me because I was diagnosed at 32 and everyone else is too busy with their own lives and families. I did ask them to do their part in learning how to support a family member with ADHD, but was met with “you’re not my priority. My husband and kids are my priority.” Ouch. But I get it.

As for romantic relationships - I feel I’m making better decisions for myself and recognizing healthy and unhealthy relationships. I’m currently single by choice. The pandemic and unemployment have made it difficult, so I’m trying to be patient. When I was undiagnosed/untreated, I was in (and stayed in) many unhealthy relationships and felt out of control. Now diagnosed/treated, I feel much more in control.

Hope this helps!

I am so impressed by your determination and self awareness. I wish you all the appreciation you deserve and that rewarding work and relationships are just around the corner for you.

Thank you ❤️

Is she undergoing regular counseling/coaching or just relying on the medication? Drugs alone won't change behavior (the reactivity aspect to the ADHD) which often are learned self defense habits. Also, and I know this will come across as weird, but studying the basic tenants of Buddhism has been helpful for me. Many of the principals are directly relevant to the challenges faced by those battling RSD.

We are looking into everything and as she is a very spiritual, and a natural empath I am gently encouraging her to look more deeply into these gifts. She is also getting counseling and has done quite a lot of CBT.

Late 30s with ADHD/RSD. Was diagnosed in my early 30s and still working on it but significantly improved. A ton of therapy, SSRIs, and educating myself on ADHD have been really helpful. I do a lot of reading about emotional regulation/ADHD, rejection, etc. (and even love the ADHDers on tiktok who make it all feel relateable!). My therapist had recommended group therapy, which I think would have actually been really helpful in order to have a controlled and honest dynamic to look at the whole reaction... but then Covid happened and the groups paused. I’ve also tried to cultivate close friendships where I can express my rejection concerns honestly - and its helped to allow me to stop and breath when the feeling arises, and then discuss my feelings with those around me in a healthy way. It’s definitely a process but one that can be improved with self awareness, education, and support. It’s not easy and just want to recognize that if you are on here asking these questions she is so lucky to have you as a parent.

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it is not a virus don't worry, even i have the same thing so I read through it.

thanks, downloaded it.

After ten years of being diagnosed, I still find myself attempting to explain ADHD to family and friends.

My observation is that it is tough for people to discern and comprehend what ADHD is, including those with ADHD.

Imagine fifty-plus years of creating earth-saving concepts, each based on hundreds of hours of intense research and a profound desire to be successful. That obsessive hard work and creativity took the place of what could be called normative behavior.

I believe that every person needs and desires love and acceptance; my message is that your child needs the same no matter their age.

It is harder to walk in a person's brain than their shoes; one is based on physicality, the other requires interpretation and understanding of highly individual ADHD mental processing.

Think behavior and impacts; each great idea created but not actuated has a personal impact on your child.

That impact weighs heavy on the none normative’s back.

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