Addison's disease psychological symptoms

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Hi, after 13 years of being unwell and always declining, much faster in the last 3 years I seem to finally have an answer. I have a short synacthen test tomorrow for Addison's but I have many classic symptoms including darkening of skin, so I think it is highly likely to be positive. I really hope so!

I was put on the 'fibromyalgia shelf' and left there for more than a decade and after pushing for further tests, being refused and having to get them from a second doctor, I was diagnosed with hypothyroidism last year. 

I want to ask about one of the problems I've had that has really troubled me. I seem to have lost self discipline in certain things. I understand that motivation will be affected but I have never been a lazy person, and it never feels like laziness or procrastination, rather a brain block. I have had huge problems with birthdays and christmases. None of my family talk to me any more, they've never believed I've not been well and that hurts because I have tried so hard to organise gifts and cards and sometimes I do, but for the life of me I cannot seem to get them sent off. The Christmas that all of 3 my sisters suddenly stopped sending presents at the same time was really painful because they'd obviously all talked about it and decided to come to that decision. There is a lot of stress involved with my family as my mother runs hot and cold with me for no reason often not speaking to me for years. This started becoming so painful for me to deal with (now it makes sense with low stress hormones) that my sisters got fed up I believe with me crying about it whenever we spoke on the phone.

I have always loved baths, but can't have them any more, because no matter how many times I tell myself before I get in, that this time I will be out within an hour, I stay in for 3-5 hours. I have tried washing first so I get the painful stuff done, that doesn't help. I literally cannot seem to act. It sounds so crazy and I can understand how it would be difficult for others to understand as I am totally confused about it myself.

If I am in the middle of one of my sleep marathons, which can last for 2-3 days, I can be in so much pain or bursting to go to toilet yet unable to get out of bed to get medication or go to the toilet. Of course I'm exhausted otherwise I wouldn't be in bed in the first place, but again it feels like that brain block thing.

Playing a game, or writing something on my phone when I am tired out and almost forcing myself to stay awake to keep doing it, even continuously sitting up to wake myself up if I nod off to keep doing it even though I have got to a point where I am just holding the phone and unable to actually carry out the act, and invariably end up asleep again, only for me to wake myself up again, and got through the whole process another few times.

Strangely enough it was one of the first things I noticed 13 years ago. I used to have an airbrushing business and noticed that suddenly I couldn't seem to change colours the way I did. All it involved was a simple rinsing of the cups and airbrush, and putting in a new colour. It suddenly became a stumbling block and it was always at that point I would stop work. I started finding it harder and harder, and put it down to pain and tiredness as the other symptoms developed, but it was the same brain block feeling that does not feel like procrastination or laziness.

I'm just hoping that now I (almost) have a diagnosis that someone will be able to understand and recognise what I'm saying as I have found it so upsetting to be honest. I just feel that I cannot be in control sometimes and it has had a devastating effect on me in many ways.

Here's hoping that I'm not the only one  who has these crazy symptoms.

Thank you in advance for any response. smile

 

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7 Replies

  • Posted

    No edit button!

    I have said I almost force myself to stay awake.

    As you can see by that sentence 'almost' is the wrong word. I literally force myself to stay awake. smile

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  • Posted

    good luck with the test - I went through the short synactin test to rule out alternate causes for mylow 24 hour urinary cortisol and suppressed overnight stress test levels - turns out I don't have primary adrenal insufficency but could stll have secondary  but had a big enough response that my endicrinologist says I a ma not dpleted and or in atrophy - which aligns with my original PTSD diagnosis. Other things that have a HPA axis dysfunction include MDD and Chronic fatigue though most drs are still catching onto the research findings = if your short synactin test ends up negative forprimary adrenal deficiency and you don't have benign pituitary tumours then worth heading back to the internet and searching up Drs conversent with HPA dysunction and anyof the above.I have PTSD which has emotional dysregulation and fatigue but it could be any of the others =they have different dysfunction signatures but no dR could tellme thisI did the internet research and took it to DRs who then obliged in ordering tests on my HPA dysfunction - big relief to have a definitive diagnosis afterbeing pulled in many directions so I hear you on hoping for a definitive diagnosis even if it is something You have to live with for ever, Will help with Family acceptance as well as your own,

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    • Posted

      Thanks for the advice. smile

      I'm glad you understand about me hoping it's positive. I've been ill for 13 years and become homebound almost bed bound much of the time. I've lost so much and I just want a chance to be treated for something and feel even 30% better, but yes in a way I also want to feel vindicated and have an explanation for what had happened to me. I don't know about the family, I don't know I could ever forget how no one in all those years has ever asked how I'm feeling or in any way acknowledged that I'm not well or struggling. I had to eventually stop trying to keep in touch because emotionally I just couldn't handle it any more. I live in Scotland and they are all down south.

      Anyway, like I said I have a kind of perma tan, and I hardly leave the house and almost black skin (I'm Caucasian) in my groin area/ inner thighs, so Addison's is looking pretty likely with all my other matching symptoms, but if it's not, I won't let it go, and like you say, I will be back to the internet searching for more answers.

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    • Posted

      One more thing, I've been through much the same as yourself regarding having to do research and then take it to the docs to get the right meds for my hypothyroidism.

      The NHS only prescribe T4 thyroid hormone and it was just making me worse. I had to resort to buying what i needed (T4 and T3 hormones) from Thailand as the only place i could get it without prescription. It was only then after a year of trying to get a referral to the endocrinologist that she finally agreed to refer me. As soon as he saw me he prescribed the T3 i needed, but also said my symptoms were too severe to be just thyroid and started looking for the problem. I've changed my doctor, I wish I'd done it many years ago.

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  • Posted

    let us know how your tests go o I amlucky here don't need referral to see a specialist so I research away and then just go and see the endicrinologist or concerned specialist  for me there is no cure yet or even universally succesful treatment so its in my own interests to keep up to date but the big thing about coping with PTSD is acceptance that some things are life changing - so knowing that helps instead of trying to get back to pretrauma self - - at least until there is a way to switch of the dysfunctions.

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    • Posted

      I'm sorry to hear that you don't have much in the way of treatment, I hope something changes for you.

      Acceptance, I agree, it's very important and something that I struggled with immensely in the first 2-3 years as everything started changing, particularly when I had to give up my work and claim benefits. I was heartbroken, but had no choice. I had guitars, motorcycle helmets and other bike parts waiting in line for artwork that I had to design, never mind paint and I'd be stuck on one job that was suddenly taking 4 times longer (at least), and I eventually ended up having to send a whole load of jobs back and admit defeat.

      It was so hard to accept I'd lost that feeling of waking up and feeling refreshed, pain free and high on life. I woke up every morning feeling like I'd been kicked by a horse in my sleep. At least at that time I didn't realise how bad it was going to get as the decline was much slower at first, and I was always being told fibromyalgia was not a degenerative condition and I would have pain free periods in between flares, which never actually happened with me but I kept believing it would once things 'settled down'.

      Another of my manifested cognitive problems is the inability to be concise any more, so I apologise for my tendency to veer off subject so much, but my point was that once I finally decided acceptance was key, it ended up being a double edged sword for me. I accepted my diagnosis of fibromyalgia, which made life a bit more bearable but unfortunately I attributed every new symptom, or worsening of usual symptoms to fibromyalgia and trusted myself to the doctor. And so I got worse and worse and just accepted for more than a decade. I couldn't give my young daughter (She was 5 when I fell ill) the childhood I wanted to which was probably the worst, and although she swears I was the best mum is the universe and never put a foot wrong, she suffers terribly with anxiety, brought on, I'm sure, because she worried so much about me.

      I'd I hadn't snapped out of my acceptance mode and started to be proactive in finding out what was wrong, I don't know that my doctor would have done anything, she just never seemed to take my symptoms seriously.

      So yes, I absolutely agree that acceptance is very important and can make a huge difference it has to be within reason.

      It genuinely upsets me when I think of how many people's lives are fading away because a fibromyalgia or similar diagnosis is masking their real illnesses.

      If my test for Addison's is positive, I believe I have already been through a crisis, and it's so scary to think I could have died.

      About 3 years ago I underwent opiate withdrawal with a new treatment called lofexedine. I was prescribed methadone for pain by my pain specialist years ago as he eventually persuaded me it was the best pain medication for me. I was in hospital for about 10 days and was very ill. I got sent home believing the worst was over; it had barely begun. Back at home I got much worse with all the symptoms of an Addison's crisis (i now realise), severe back pain, vomiting, diarrhea, very low blood pressure and pulse, hallucinations... It was a nightmare and I couldn't reach my pain doctor as he'd gone directly on holiday, even though on discharge he'd said if there were any problems, to call him and he'd get right back to me. I had to beg one of his colleagues over the phone to do something and of course he didn't accept how ill I was; as far as he was concerned I was over the worst of it before I left the hospital! He actually told me over the phone there are people a lot worse off than me, when I complained about the severe back pain.

      So in light of a very probable Addison's diagnosis, I would say the chances are high that I was going through a crisis and whereas normally if I'd have been that ill I would have probably gone to hospital or something, I just suffered through it as part of the withdrawal.

      I'm sorry, I had no intention of writing such a long post.

      I really wanted to make the point though that I think fibromyalgia is very often a misdiagnosis and could be dangerous.

      I think many people diagnosed with fibromyalgia could have thyroid problems, and if 1 person read my post and got successful treatment for a hidden condition I would be very happy.

      In fact I should make a shorter past about just that subject at some point I think. But smile

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  • Posted

    I was diagnosed with Addisons Disease

    17 years ago. I had a lot of the symptoms

    and issues you had. Because of my quick thinking Endocrinologist he ordered blood test that determined I had Addisons.

    I was put on a steroid replace regime and within a week I was finally feeling that all of

    the problems that had been plaguing me

    was finally over. I was put on Decadron

    Florinef & cortisol for the steroid replacement. My Dr. told me I was within

    a month of passing away. He said Addisons Disease is a Disease that most Dr's don't think of a first because it's so rare.

    Today I'm back to my normal self.

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