Here we can all be heard for a little while. Part 3

whitewing

Sorry, code. Also I agree with solarjunkie's post.

Also sorry to faerie about the Addison's. Maybe you can try to embrace getting the diagnosis rather than the fact that it was missed for so long. I know you didn't feel believed, and it is wrong that you didn't feel believed; I think we can all improve our listening and talking skills to be more effective.

Waves_and_Smiles

Massive hugs, code. I am so sorry. Be kind to yourself right now.

Yes, I have Addison's Faerie, and I am sorry you do, too. It is always one of the last things doctors think of because it is relatively rare and the symptoms are similar to many other conditions, it took years for me to be diagnosed. It isn't too bad to live with, the hardest part is the fatigue and you might find you feel more depressed when it flares. What it really means is your body isn't producing enough of it's natural steroid, so you will take supplements to help it out, just like with low thyroid conditions.

It is very important to keep hydrated, I always keep a glass of water topped up next to me. Also you need to keep your potassium levels steady, bananas are your new friend. I eat 2 small ones every day. It is possible to have an adrenal crisis where you need to be hydrated at hospital hence the medi-alert but I never have in 13 years. It is thankfully quite easy to manage.

Make sure you have your thyroid checked frequently as the two problems go together, if one flares the other tends to so be aware of that. It does take a few months to stabilise but once you find what works for you it really isn't too bad at all. You will live a normal lifespan, just take the medication and remember activities might make you a little more tired than they did previously.

faerielight

thanks WW, I am so relieved they found it in the end, I'm feeling overwhelmed with the amount of physical illnesses I have though.
Thanks Waves, hopefully I will stabilise with this over time. I just feel so dreadfully ill at the mo, and I'm sure all the current stress isn't helping. I already have autoimmume hypo and didn't respond to thyroxine so I'm on T3, plus autoimmune ovarian failure, I really hope that the mri doesn't conform inflammatory arthritis as well, I've got enough autoimmune illnesses! I feel so dehydrated, that's interesting. I always drink loads of filtered water anyway, but it doesn't seem to be enough. the banana tip is helpful, thank you, and I can't get enough salt either, it must be the dehydration. What dose of steroid are you on Waves? I'm on 15ml a day, but have been doubling it due to the stress. The test showed that 2 months of steroids hasn't made a difference, but hopefully it will have a cumulative effect.

faerielight

how you holding up today, code? we're all here for you to listen and support you

Waves_and_Smiles

I take 20mg Faerie. You do have to be careful in hot weather because you will dehydrate faster so you need to drink a lot more then. I am never not drinking, I have water by me at all times and drink on average 3-4 litres a day. You can drink flavoured water or fruit juice diluted if you get bored. Watch your alcohol intake or anything that dehydrates, for every glass of wine drink a pint of water with a pinch of salt in it. if you have an upset tummy then you need to drink a lot of water with a pinch of salt and teaspoon of sugar and practically live off bananas.

I can pour out a teaspoonful of salt and just eat it, I crave it constantly. It isn't actually the whole salt itself that our bodies want, it is the potassium ingredient in particular. So eat lots of bananas and your salt craving will reduce. Do you like yoghurt, potatoes of all kinds, leafy greens and fish? They also have high potassium levels so a diet based around those will help with the cravings. We crave salt because it is difficult for our bodies to retain potassium. It is important to try to stay calm which I know is hard for people like us. When we have a shock our body pumps out a natural steroid to stabilise itself which we lack so the more relaxed you can be the better. Something like a car crash for example can cause an Addison's crisis, anything that causes our body to release adrenaline suddenly. That is why we carry a medi-alert, so people know to rehydrate us straight away and increase our steroid temporarily.

Many, many people develop an autoimmune thyroid disorder and Addison's at the same time, I have myself. Is it Hashimoto's you have like me? They tend to go hand in hand so try to think of it not as another random condition but as one that accompanies what you already have. Hot weather is difficult so try for minimal activity, don't try running a marathon! You will soon learn to love winter like me! They will start you on a low steroid dose and gradually work up, it took 4 months for them to find the right dosage for me. Symptoms-wise it really isn't that different to autoimmune thyroid disorder, just with thirst and salt cravings if it is hot or we are stressed.

faerielight

thanks Waves for your advice, I've never known anyone else with this! I don't drink alcohol at all which is good. I 'm vegetarian and I love leafy greens and I do eat a couple of bananas a day anyway! I didn't realise it is the potassium we need.. my salt cravings are insane and I'm ravenous on the steroids I'm so overweight I don't want to pile on any more weight, but with the psych meds as well I can't stop eating. Yes it is hashimoto's too that I have.. The last couple of summers have been utter hell for me. I used to love the heat but I've really struggled recently. I thought it was the premature meno/rosacea/m.e combo but maybe it was this making me struggle so much in summer. I'm freezing to the bone though at the mo, I just can't get warm which is weird.I have always been thirsty and a big water drinker, but I'm drinking constantly and feel so dehydrated. The other thing is that I can't sleep it's impossible to get much at all, my heart is racing, even when I'm trying to relax. The other symptoms a are constant headaches, blurry vision, I can't read,feeling sick and ongoing tummy upset..with utter exhaustion, weakness and bad cramps in my legs. do you think these are related, waves.

Waves_and_Smiles

Aw Penitent, that is hard. No wonder you feel upset today. I know how you feel because I will always rent. Will you be able to return to work at any time? Do you need someone to care for you? You have different options depending on the answer. Renting is possible even now but it is difficult to but not impossible, to find a landlord who will accept benefits. Hang in there and post when you need to.

Ah yes Faerie, you have the triple whammy I do, antipsychotics, steroids and low metabolism with Hashimoto's. It isn't easy. Try to snack on healthy things if you can, anything green or raw mushrooms are a bonus because of the potassium. When you describe feeling cold do you mean inside your body like it's your bones? If so, that is Addison's related.

The thing to remember is most symptoms come from lack of salt and dehydration. You may get bad aches in your bones and leg cramps, headaches, dizziness, fast heartbeat and nausea as well as feeling sleepy. They mean you need to drink more water with a pinch of salt in the glass. I will be honest and say summers are hard, try your best to keep cool. You only want to lose minimal fluid through sweating. I dread the summer every year but I live in a very hot flat and never go out, if you can get outside on cooler days and keep your flat cool it will help a lot. I find starting summer days with a pinch of salt and a teaspoon of sugar in a pint glass of water helps a lot.

If you are craving salt try some salted crackers, unless you have high blood pressure then having small and regular amounts will help. Check with your doctor if you have any other health problems that could be influenced by salt, if you don't then have some when you want it, your body is craving it because it needs it. Do remember not to guzzle too much water without salt too, you need both. I practically live off diluted fruit juice and various salted crackers, sometimes with extra salt sprinkled on top. I even put salt on cheese. Do you like crisps? Low-fat salted ones can help, I add extra salt to mine. Salted nuts are also your friend and good for protein so will fill you up and stop the snacking. Salted popcorn is another option that will help and not pile on weight. One of my favourite snacks is kale chips. Put leaves onto a baking tray and sprinkle with salt and olive oil, cook in a medium oven for 20 minutes. A very low calorie potassium and salt snack! Again though, before you try any of these check with your doctor that extra salt won't harm another condition. I feel like I have said salt a hundred times in one paragraph...

The first few months with Addison's are the worse while they adjust the steroid, it gets a lot easier after that. So many people with Hashimoto's go on to develop it, you certainly aren't alone. I often confuse my Addison's symptoms for my psoriasitic arthritis, so that could be what is hurting you right now. Let the steroids build up and then see what improves, it takes 2 weeks for each adjusted steroid dose to take effect. Although Addison's feels horrid it doesn't limit your life span at all just like Hashimoto's, unless you have a crisis caused by something like a shock it is just something you need to keep at the back of your mind. Don't worry about the steroids, I have taken them for 13 years with no bad side effects other than wanting to eat everything that isn't nailed down. In our case steroids are a supplement our body needs, not an extra medication if that makes sense? The very bright side of course is you will have had this for a while so as soon as it stabilised you will feel better than you have in years. Believe me, the difference is amazing!

Waves_and_Smiles

That is a bit between a rock and a hard place, Penitent. Do chase up MIND, they should be able to give you at least link to a befriending service I would hope. I understand totally about the problems going out, I have WaSp here and I still stay in. The income related benefits is a factor, it is something I panic over because it is my only income so I can understand your worries there. For the time-being can you create a little haven for yourself at your mum's house? Perhaps have things in your own room that you have purchased that mean something to you? That may not work for you of course, I say this as a hoarder who needs her things around her to feel at home!

mellymoo74

WaSp is WaS partner

MIND are good for drop in centres and meets so would be good for you.

mellymoo74

Speak to the park they may have a degree of movement on age.


Hi everyone have been reading

Elsien yet again you have impressed me with your kindness and ability to cope.
Code I'm sorry I'm a bit male in my thinking so tend to jump straight in with hectoring - just be kind to yourself and doggy hugs lots and lots of doggy hugs.
Cal - proud to call you my friend Mrs, look how far you have come!
HBS - have replied to your beautification thread, little things make a huge difference

Anyone I have missed Hi.