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Crohn's Disease Forum » Support Forum » Mental Health Support » Well, I'm not depressed!


02-11-2015, 02:46 PM   #1
Rebecca85
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Well, I'm not depressed!

Some of you may remember me, I was very active during 2010-2012 until I had my daughter. Then a combination of less free time and PND, I just didn't have the energy to help others so stopped coming here so often. I was officially diagnosed with depression and started on antidepressants in Jan 2014, then with anxiety in Oct 2014 and my dose of antidepressants was increased, and diazepam prescribed to help with that.

I've been waiting since then for a psychiatric consultation and investigation into a possible autistic spectrum disorder. I finally had my initial appointment yesterday.

I spoke to the psychiatrist for an hour, mainly about my experiences growing up. At the end, he said there is very little doubt in his mind, he is 95-99% sure I do have Asperger's. Apparently I am very high functioning, and have done a good job of analysing social interaction and mimicking it, but his clinical experience means he just 'knows'- for example my eye contact is very typical of a person with AS, and whenever he asked me an open question I paused to process it, something I don't do with closed questions.

He still gave me a handful of diagnostic questionnaires to make things official. He says he's absolutely positive I don't have clinical depression, and the symptoms that I display are down to the ASD. Likewise with the anxiety. But I can't tell you the relief it's given me, I have suspected this for at least 10 years. Already my anxiety has lessened, because I'm not anxious about being anxious, and when my anxiety is triggered I've managed to stop the downward spiral of negative thoughts. One of the last things the psychiatrist said to me is 'you're not a bad person' and for the first time I can believe it!
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Crohn's in the terminal ileum, dxed Jun '10

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02-11-2015, 04:51 PM   #2
happy
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Hi Rebecca85,
Welcome back. I am glad that you feel the diagnosis is helpful to you. I am sorry to hear about your recent struggles, however. Several people in my family have learned that they have underlying brain disorders (I don't have a better term--sorry) that masqueraded as anxiety and depression as well. They were diagnosed as adults and once they (and those around them) became educated about the disorder, life became a lot easier for everyone. May you embrace your difference--I believe that people who have exceptionalities view the world a little differently than most people and that their unique view is a gift to the world. Thank you for sharing your news with us.
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02-11-2015, 04:56 PM   #3
Catherine
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As the mother of asperger young adult. We also noticed the difference dx made to anxiety levels.

You part of a wonderful group people.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
02-12-2015, 10:23 AM   #4
Cat-a-Tonic
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Hi Rebecca, I certainly do remember you. You may recall that I also suspect that I might have Asperger's (I still haven't worked up the courage to ask my doctor about it). Part of the reason I haven't worked up the nerve to look into that is, I just wasn't sure that there was anything my doctor could do for me if I did get that diagnosis. It sounds though like just having the diagnosis has helped you immensely, so that's encouraging. Thanks for sharing that with us!

I hope everything else is going okay with you. How's your little girl doing? I also seem to recall that you were being tested for MS a few years ago - something along the lines of, you had one episode, but in order for it to be considered "multiple" sclerosis that you had to have multiple flares of it or something like that? I hope that never came back and never fully manifested as MS. Hope you're doing well!
02-12-2015, 10:55 AM   #5
Rebecca85
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We're all doing really well, thanks. My little girl is now 2, and is certainly living up to the terrible twos, she sure can tantrum! But (I may be slightly biased here) she's really bright, cute as a button, talks a lot, and she's getting to be so grown up (her favourite phrase at the moment is "my do it myself!").

Well remembered about the (potential) MS- the pins and needles sensation is slightly worse but I haven't had a major relapse yet. I'm waiting for results from a lumbar puncture that will hopefully shed some more light on whether it's full blown MS or just a one off.

With regards to the Asperger's, I'm currently medicated for depression and anxiety but because I'm still breastfeeding, I'm limited as to which anti depressants I can take. The psychiatrist mentioned that SSRIs seem to be more effective for people with ASD than the one I'm taking, or alternatively Risperidone is licensed for use in ASD. So when I finish breastfeeding, I'll look into switching meds.

Having a diagnosis would also help my husband (did I mention I got married?!) to understand me more. He's struggling at the moment because while I'm so stressed I hold it together (mostly) in public, then have huge meltdowns at home. Part of the reason I have a diagnosis of depression is because I have been hurting myself (that's the thing that my husband finds hardest to deal with). Now that my psychiatrist has pointed out it's not actually self harm, it's stimming, I will hopefully be able to find alternatives.

The final way I think diagnosis will help me is that others will hopefully be able to make allowances for me. For example, there was a new member of staff at work who put in (several) complaints about me. My supervisor defended me each time, but after a few weeks of it, she suggested we sit down and have a good chat about the situation. It turns out that the new member of staff thought I was being obtuse and obstructive, I pointed out I was doing exactly as she said, to which she replied 'yes, but can't you just take some initiative for once?'. I thought I was doing the right thing by following her instructions to the letter, no more and no less! As soon as I explained my MH problems and the fact that I was going to be assessed for Asperger's, her whole demeanour towards me changed.

But balanced against the positives, I was really anxious about the whole idea of seeking a diagnosis. I think my worst fear would be being told I didn't have AS and I'm neuro typical- because in that case I would be choosing these thoughts/behaviours!

So only you can know if it's worth seeking a diagnosis or not.

How are things going with you? Did you ever get an IBD diagnosis?
02-12-2015, 03:21 PM   #6
Cat-a-Tonic
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I think my worst fear would be being told I didn't have AS and I'm neuro typical- because in that case I would be choosing these thoughts/behaviours!
Yes! That's exactly how I feel. I'm afraid to be told I'm not an Aspie, because then what? That would mean I'm just a weirdo who sucks at being social and sucks at eye contact and has odd quirks and obsessions just because I like being like that?

Can I ask, if it's not too intrusive, are there other people with Autism or Asperger's in your family? I ask because I once read that Autism seems to run in families (there's still so much they don't know about ASD so they weren't totally sure and of course there is likely much more to it than just genetics). I have a cousin with high-functioning Autism which also makes me wonder if I might have Asperger's - maybe my mental quirks are related to my cousin's. He also has digestive issues (mainly a lot of food allergies/sensitivities) and I've read that a lot of people with ASD also have digestive issues, so there again there may be a connection for me.

Thanks for asking - no, I don't have a firm diagnosis yet. My GI and GP both call it IBD, but they still haven't been able to pin down the specifics of which type of IBD I have or how best to treat it. I respond well to Entocort, but it gives me wicked migraines. They won't put me on stronger meds than that (currently just on Lialda, was on Entocort for most of 2014) as they feel it's unsafe to put a technically undiagnosed person on the stronger IBD meds. I don't blame them, but it is frustrating. It's been over 5 years now with no diagnosis. I have an aunt (related by marriage) who took something like 30 years to get a diagnosis of Crohn's, so I'm trying to be patient as I know from my aunt's example that sometimes it just takes a long time!

And no, I didn't know you had gotten married - congrats! I think the last time we chatted, you were still referring to him as your boyfriend. Congrats on your little family!

Wow, your stimming certainly sounds awful and I'm glad that it sounds like you're getting help for it. I don't self-harm except that I pick at the skin around my fingernails, and sometimes I do that until it bleeds or gets infected. For some reason that skin and the cuticles, I just feel compelled to pick at it and to snip away at it with a fingernail clippers. It usually seems to be in relation to stressful times (I've had a very stressful time at work lately and my fingernail areas are a mess right now!). Other than that, I don't even know if this would be considered stimming or just a quirk, but I "air type". Like, if someone says a word or phrase in a certain way, sometimes it'll bounce around in my head and I'll make my fingers move as if I'm typing that word or phrase, that's how I get the word out of my head. I'm guessing that's considered stimming! I think pretty much any sort of odd/compulsive behavior like that can be considered stimming?
02-13-2015, 02:16 AM   #7
Rebecca85
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No one in our family has a diagnosis of ASD, but my brother is a stereotypical aspie, and my dad is 'quirky' (he wouldn't meet criteria for diagnosis though, my brother would).

I think stimming is repetitive sensory seeking behaviour (self stimulation) so not just any odd/compulsive behaviour. I think air typing comes under that category. Though most people have stims, the difference is NT people tend to have fewer/do them for less time. I have quite a few stims, and the worst one (head banging) only happens when I'm in meltdown so I guess it sounds more awful than it is. It got to the point where I was having a meltdown like that every week though so I definitely do need help with it.

My everyday stims are tapping- on my legs, table, ipad, wherever- I did use to be a chewer but I mostly trained myself out of it, I use music (I must look like a right sight in my car because I turn my music up and sing and flap and tap along), I fiddle with my name badge at work. Not sure if this is classed as a stim but I burst out into song at every opportunity, if someone says something that sounds like a line from a song then I have to sing it back to them. If I'm anxious then I twitch my feet (I was unaware of this one till my husband pointed it out, he says that's how he can tell if I'm getting anxious, though I'm a lot better at telling him than I used to be) and play with my hands, bite my lip or nails, pick at the skin around my nails.

Now that I've written all those down it's a huge list, and they're just the ones I can think of! I certainly rarely sit still. I was trying to describe it to my husband, sitting still just feels wrong in the way that crossing your arms or legs the wrong way does.

Anyway, we got married summer 2013, our daughter was (a very cute) bridesmaid and stole the show- especially when the registrar got to the bit about 'does anyone here have any lawful objection...' she blew a huge raspberry! Since then we've also moved house (though not far) as our old place was a little too small for the three of us. So loads of changes since we last chatted!
02-13-2015, 11:48 AM   #8
Cat-a-Tonic
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I rarely sit still as well. I get fidgety especially when I'm supposed to be sitting and watching a movie, or something like that. I jiggle my leg a lot (something my mom and brother also do, we can shake the whole house if it's the 3 of us together doing the leg jiggle!). I have found crocheting to be hugely helpful, it keeps my hands occupied and my mind occupied (I need to count stitches/rows or pay attention to when I need to change the yarn to a different color, etc). I'm not sure if crocheting counts as stimming, but it helps me from being too antsy when I'm supposed to be sitting still.

Your wedding sounds lovely, and I bet everybody laughed when your little girl blew the raspberry at that particular part of the ceremony! Ha ha, she sounds adorable. Congrats on the new house as well, that's both exciting and exhausting to move to a new place. We bought our little fixer-upper house about a year before I got sick, so it's been challenging at times to have to do house repairs and upgrades while also dealing with whatever challenges my body is throwing at me on any given day. Our bathroom still needs to be remodeled, it's currently brown & pink (it was previously brown & yellow & pink but we did paint over the yellow walls!). So yeah, the entire time I've been ill, I've had to use a pink toilet. I can't wait to get new bathroom fixtures that are less ugly, ha ha.

That's interesting about the bursting out into song stim that you mentioned - I don't have that normally, but I did during the short time that I was on pred (I did a trial just to see if it worked for me, and it did work wonderfully). I felt so fabulous on pred that I had to stop myself from bursting out into song. I definitely did the car singing & dancing that you mentioned! For me though I'm pretty sure it was just a pred thing and not a stim. I do sing in my car when not on pred, but not to the extent that I did when on pred and I don't feel the overwhelming urge to burst out into song when not on pred.
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