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Addison's Disease/AI and early morning exercise?

(17 Posts)
ElphabaTheGreen Sun 03-Dec-17 21:19:11

I have Addison's Disease and I have a hell of a job fitting exercise in around a full-time job and two young DCs but I've found it a game-changer when it comes to managing fatigue, plus I want to off-set the negative effects of the daily steroids I have to take! (25-30mg hydro, 200mcg fludro)

I tend to do it in the evening which means I spend zero time with DH between putting the DCs to bed and crashing into bed myself after doing a DVD or going to a dance class.

Is getting up at 5am to exercise out of the question with adrenal insufficiency, morning cortisol levels being what they should be but actually are in our case? Apart from really not wanting to get up that early and jump around, I wake most days with a fierce headache which generally subsides with my first dose. What I'm not sure about if that's an indication I really shouldn't be pushing things at that hour. I would have to get up and exercise straight away, given my timescale (out of the house by, or just before, 7am, allowing time to get myself and two DCs ready) so I would have to neck hydro/fludro and get a DVD on, not wait for it to kick in before starting, headache notwithstanding.

TIA!

Fairylea Sun 03-Dec-17 21:23:28

Can I just say, as someone that has Addison’s disease, that I am absolutely amazed that you work full time and exercise in the evening! shock

I am 37 and have Addison’s and a child with special needs and there is no way I could even contemplate working. I squeeze in as much walking as I can but I don’t have the energy levels to exercise and my worst time of day is the evening - I am falling asleep in the chair every night by 10pm..!

I know that isn’t very helpful but I just wanted to post and say that you should be very proud of yourself for doing as much as you do. The fatigue of addisons is crushing.

(I take 30mg hydrocortisone daily, thyroxine, and I also have moderate asthma).

Fairylea Sun 03-Dec-17 21:28:31

To add to my post... I get up at 5.50am and take my steroids then and get up and whizz about with ds to get him ready for the taxi coming at 7.30am (he goes to specialist school) and mornings are very full on! So I guess it is a bit like launching into a work out straight away....! When he’s gone I slump on the sofa for a couple of hours and my meds kick in then and I feel better. Ideally I think a lot of people take meds a couple of hours before they wake but that just isn’t possible for me or I’d be waking up to take then at 3am!

Floralnomad Sun 03-Dec-17 21:35:07

fairy how much fludrocortisone do you take ? I’m fairly newly diagnosed with Addison’s but experienced as my mum has had it since I was 6 months old ( 50+ years ago) . I’m about to increase my fludro to 100mcg and take 30-35 mg of hydro , also on levo for hypothyroidism ( long standing) . I have to take my morning steroids first thing and then can pretty much do as I want , if you want to start your day at 5 could you not just take them then and bring forward the afternoon dose if necessary or split even further so you take them 3/4 times a day instead of 2/3 or whatever you do now .

ElphabaTheGreen Sun 03-Dec-17 21:43:24

I'm up at 5:45am, leap through the shower to try and beat my early-risers (Gro-Clocks keep the 5 and 3yo just about chained to their beds until 6:10), then do breakfast for me and fruit snacks for them while DH showers, shoe-horn the 3yo (often kicking and screaming) into his clothes then out of the house by 7am at the latest for an hour commute to start work at 8am. DH dresses the 5yo and does drop off to nursery and breakfast club. So, yes, it would basically be two workouts in the morning! But exercising in the evening is bloody hard too, after the marathon that is hour commute back, child pick-up, feeding, homework, playing, bathing, bedtime, so I'm wondering if I shift it to the morning - it would still be hard, but would it be bordering on dangerous? Only to give DH the opportunity to watch me fall asleep on the couch instead??

Yes, the fatigue is shit, shit, shit and I do spend most days feeling like I'm pushing said shit uphill, but I'm convinced the exercise is what actually keeps me functioning to work!

ElphabaTheGreen Sun 03-Dec-17 21:46:47

X-post with Floral - I'm more concerned about exercising on no steroid cover first thing in the morning, and whether I'd be doing myself a mischief, rather than what I do the rest of my doses. I'm pretty sure I could work that out - I had a day curve done to work out my optimum dosages/times so I'd just nudge that around a bit.

ElphabaTheGreen Sun 03-Dec-17 21:50:42

Normally take doses at 6ish, 11am and 3:30pm, if that makes a difference. If I got up earlier, I'd probably go for 5ish (10mg) then 5mg each at 10am, 1pm and 4pm or similar.

I am really trying to get my dosage down to consistently 25mg, but ideally 20mg. I can't help but feel my rather busy life will make that impossible, though!

Fairylea Sun 03-Dec-17 21:50:44

I actually don’t take any fluro- my endocrinologist hasn’t prescribed any and despite me asking about it they don’t seem to think it’s necessary hmm

I belong to a really good support group on Facebook- adrenal insufficiency support- which has some really knowledgeable posters about about 6000 people in it so may be worth joining if you haven’t already!

ElphabaTheGreen Sun 03-Dec-17 21:54:53

That's odd, Fairy. It's young females that need fludro the most!

My endo was in denial that DHEA was needed by female Addinsonians, though, despite other endocrinologists advising it for their female AD patients with persistent fatigue. Got my own from a source recommended on the AD Self Help Group and I do think it made a difference.

Fairylea Sun 03-Dec-17 21:58:39

That’s interesting. To be really honest I haven’t felt particularly pleased with the care I’ve had from the endocrinologist— most of the stuff I’ve learnt has been through forums! I was pretty much given my steroids and emergency injections and sent away with the diagnosis! (Sorry to hijack the thread!)

At the moment I take 10mg at 5.50am, 10mg at 12 and 10mg at 5pm. Evening time is worst for me. I am absolutely exhausted by 7/8pm. Dh and I don’t have much of a relationship intimacy wise at the moment, I’m just so absolutely exhausted. I was diagnosed 3 months ago.

ElphabaTheGreen Sun 03-Dec-17 22:07:38

Ah, well it takes a while, and they may yet try fludro with you, once they see how you're managing on the hydro. I assume you're still on 3-4 monthly reviews at this stage?

There also seems to be this belief among doctors that steroid replacement equals instant recovery. Several of them have said as much to me.

No.

I was off work for the better part of a year after diagnosis, mainly because of the fatigue. It took a lot of steroids higher than the endocrinologist really wanted (tough), fistfuls of supplements (magnesium, multivits, high dose B12, D3, omega 3, SpaTone, DHEA) and gradual introduction of increasing exercise to get myself functioning again. I still battle with fatigue daily, but it's not crushing the way it was in the beginning (which was after a crisis, which is never going to help!)

Floralnomad Sun 03-Dec-17 22:48:07

You do need the fludrocortisone as that replaces the aldosterone which sorts out your sodium levels and your blood pressure . Personally I’d change endocrinologists , even go private if necessary . The central portion , which does nothing life affirming does secrete some hormones which can affect libido and body hair growth . Steroid replacement has meant pretty much instant health for me after 6 months of vomiting , immobility and hospital admissions but I suppose we are all different . Have you been referred to an Addison’s nurse or endocrinology nurse specialist ?

Fairylea Mon 04-Dec-17 06:08:18

Thank you both. I’ve queried the F and they’ve told me that if I had needed it they would have prescribed it (so helpful). I am due to see them again next month so will push for it then.

It’s encouraging that both of you seem to have reached a better quality of life with time, because at the moment I feel I don’t really have much of one!

I’ve thought about going privately - even though I can’t really afford to!- but I’m not even sure who would be a “good” endocrinologist to see. The one I am under at the hospital - unbelievably- had a really good reputation! I seem to have slipped through the net really.

ElphabaTheGreen Mon 04-Dec-17 06:37:58

I actually wouldn't change endocrinologists - not when you're so early in your diagnosis. I felt frustrated for a long time and thought about changing consultants (even looking at private) when things just didn't seem to be getting better for me. I wasn't put on fludro straight away - he wanted to see how I went on with just the hydro first, and even then it was another several months before I was put on the dose I am now. Now that I'm on a more even keel, I'm very relieved I stuck with him as my appointments are close to home. We did get there in the end - it just takes time and the obligatory NHS three months between consultant visits really doesn't help when you have nothing else to do but feel like shit.

I'd also be wary of Facebook groups (she says, ironically, on an Internet forum grin). There are a huge number of unqualified people who attribute everything from fatigue to the Syrian crisis to whatever condition they have, and seem to know FAR MORE than medically trained professionals, and it's almost treated like a conspiracy against whatever affliction you happen to have. I was a member of the Addison's Disease Self Help group for a year, which I found a bit that way as well, but as a member you do have access to the actual evidence-based stuff plus their meetings. I wasn't able to get to any of the latter but you might. They have talks from endocrinologists and specialist nurses. You do have to pay to join which I think influences the demographic and content somewhat.

Finally, don't be afraid to examine psychological causes to your fatigue as well. You have a lot going on in your life, as do I. Finding something that could be a 'magic bullet' cure to one thing that's making life difficult is almost a relief, but doesn't actually fix the problem. So while you might get some temporary/marginal improvement from medical treatment, you might spend the rest of whatever chasing your tale blaming a condition that isn't actually at the root of your problem. I actually work as an OT with people with fatigue - neurologically-related and auto-immune related. The ones with the worst fatigue are those with the most shit in their lives, but are most resistant to talking therapies because they think it's all the fault of the condition (which also happens to give them a handy get-out clause for the least pleasant things in their lives). This is why self-management is also so important - exercise, good diet and pacing yourself by pushing yourself a little on a bad day, but planning in rest on a good day.

Filzma Mon 04-Dec-17 07:45:13

I'm on hydrocortisone and levothyroxine and I must say the first year post diagnosis is by far the toughest.
I wouldn't have dreamt of exercise until recently when I begun taking supplements and watching diet well. By exercise I mean lifting light weights to counter the muscle wasting. No cardio for me, I find it causes more adrenal fatigue and wears me out faster. So that's an amazing feat you're accomplishing OP!

Floralnomad Mon 04-Dec-17 10:52:51

I was started on fludro at my second appt , so 2 weeks after I’d started the hydro ( this was private but I’ve now swooped to NHS care with the same endo ) , perhaps this quick treatment explains why I seem to be feeling better than some of you . I’ve got an appt (NHS) this week so 5 weeks since I last saw him and I expect him to increase the fludro dose I’m on , although I have a wheezy chest at the moment so not feeling so good . I’ve also been diagnosed with emphysema this year so it’s been a bit of a downer health wise .

ElphabaTheGreen Mon 04-Dec-17 19:38:53

I would encourage you to persist with the cardio, Filzma. I know of at least two people with Addison's who have run marathons, there's a Canadian Olympic gymnast with AD and, of course, JFK ran a country with both Addison's and hypothyroidism - The Bay of Pigs alone must have been the equivalent of two marathons! I don't think I'm an exception. Grade your cardio up slowly, and maybe plan it for towards the end of day so you're winding down and can crash afterwards (have I just answered my original question...🤔). Weights are important for metabolism, which is what slows down with long-term steroid use, but the cardio is essential for cardio-vascular fitness and weight control. It's the combination of cardio and weights that really helps me keep fatigue at bay, and what research backs up as a key fatigue-fighter. The less I exercise, the more tired any activity makes me. I have to force myself back into it after illness, but it really is the best way to fight fatigue, even if it seems counterintuitive to begin with.

Also - is your steroid cover adequate/timed correctly? 'Adrenal fatigue' is a bit of a new-agey thing beloved of personal trainers and nutritionists trying to sell you diets. You'll be hard pressed to find a medic who thinks it's 'a thing'. Those of us with AD don't have any adrenal function, and therefore can't technically get 'adrenal fatigue' - whatever function was left by the disease has been flattened by steroids! If your steroid cover isn't accommodating physical activity you might need to tweak timings or doses.

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