SMILE AND MUTTER: Does anyone experience a distinct... - PMRGCAuk

PMRGCAuk

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SMILE AND MUTTER

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Does anyone experience a distinct temperature variation in left and right side? my hands and feet are about 2-3 C colder. And no i am not sitting with my hand and foot in the fridge :-) my hands (not me, just the naught hands) have been dropping things alot over the last week. As you can imagine dropping lunch is not guaranteed to see me smile!

my pred has been up and down a bit but following an episode i had my adrenal gland tested and it appears to be suboptimal so for the moment i am on 4mg pred no headaches but all the usual basic aches and worth nothing after lunch time. still its 2 and a half years in and the edrocranologist said pains are probably due to adrenalin withdrawal so to stick with it and see her again in AUGUST.

Currently struggling with my own bad attitude but i have been told that smiling releases andorphins which kids your body and mind into feeling happy so whenever i remember i smile...sometimes accompanied by mutterings.

14 Replies
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Hi Doubtfullee. It seems you are in the midst of a big sloppy bumout! And you have to wait till August to see the doc again⁉️⁉️⁉️ Well....crap!

There! I’m ticked off for you too!

Now, ...any way to turn some of this situation around? As in re-frame and maybe feel better?...

I wonder if increasing your pred dose to 5 or 7 mg. Might give you a bit of relief from your “suboptimal “ adrenal function...i dont know the answer...but soon, our Wise Ones will appear, and I know they will give you some ideas.

Here’s an FYI from me... today, I was feeling pretty crummy, both body and brain. It occurs to me that I have been neglecting to drink water... by quite a lot!

I know that water is my friend, and generally makes me feel better when I pay attention to hydrating myself. So, back to my fav cup of hot water ........(yes, plain hot water)😁. Me thinks my brain gets thirsty, and wrecks havoc with everything else till I wise up!

So, we ( you and I) can give it a try, and see if drinking more water will help everything else feel better🤪. No harm, huh...

Big hugs, and we got your back here! Jerri

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Hidden in reply to 1Purplecrow

Our water eprecently has tasted too shemical. Even the dog drinks from rain water but I will up my water drinking again via fruit tea, thanks for that timely reminder😀

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Hidden in reply to Hidden

If you get a jug with a lid and refrigerate overnight the water loses the smell a bit. When I had my kitchen done I paid for water filter as my water was undrinkable. It's soooo much better and my dog drinks it happily now .

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Hidden in reply to Hidden

Oh and there's no way I would sit until August feeling so rough.

PMRpro
PMRproAmbassador in reply to Hidden

You can buy jug water filters that remove the chemical taste.

HeronNS
HeronNS in reply to Hidden

We get a rather strong smell of chlorine. I used to use a Brita filter but decided water sitting in a plastic jug was probably not that great either. So now i have a glass jug which I fill up as necessary and the chlorine odor dissipates quite quickly. Makes better tea, too. We do have very soft water, so we aren't getting any other odours from it.

Hi doubtfullee, Did you mean Pred withdrawal, where you said Adrenaline withdrawal, causing your aches and pains?

How much have you dropped your Pred dose by?

What are they going to do about your suboptimal Cortisol production?

I wonder if your temperature variation is to do with that?

Is your blood pressure normal and the same reading in each arm? That can be significant apparently - if they differ by 10 points or more. Mine did consistently and I was sent for an MRI scan to look for Aortic Stenosis, I was cold in the extremities on one side too.

I don’t think that you are showing a bad attitude. I think you’ve got health worries that require proper attention. You need to see someone before August. Perhaps your GP to get her to explain things to you more clearly and to investigate the symptom of being cold on one side. I would want to ask what treatment is planned for my Adrenal Insufficiency. You’re not tapering your Pred dose are you?

I would also mention the dropsy if it carries on.

My smile would be a bit rictus by now in your shoes. Let us know what happens?

PMRpro
PMRproAmbassador

Has the endocrinologist checked your adrenal function with a synacthen test?

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Hidden in reply to PMRpro

Yes she has, said thE there was some function but not enough, at that point she increased pred from 2.5 to 5 and left me at that level for 4 months, at my next appointment saw another endocrinologist who dropped it to 4 without retesting first, she said she would send me out an appointment for another synth test in June and gave me an appointment to see her again in August to discuss the results,

PMRpro
PMRproAmbassador in reply to Hidden

I've just had a similar conversation with someone else whose endo seems to be ignoring the fact they have been on a low enough pred dose to stimulate adrenal function for 18 months and it hasn't happened - and has been told it is fibromyalgia! He has had to retire because he can't get out of the house never mind work. Now they have found it is low cortisol that previous history is being ignored. You couldn't make it up could you?

How did you feel at 5mg? How do you feel at 4mg?

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Hidden in reply to PMRpro

Felt exhausted on 5 feel the same on 4 no worse . I've reached the stage of giving up . Non ill people tell me I should just do more , go out more, whatever they suggest I cannot possibly have made it clear enough that simply getting essentials done feels overwhelming. I have to keep going till I stop because once I sit down I seize up and walk and feel like I am 100 years old. I am failing to see any tunnel let alone the light at the end of it.

PMRpro
PMRproAmbassador in reply to Hidden

You are almost certainly on too low a dose to manage the inflammation that causes the PMR symptoms. Once you are at too low a dose for that it makes little difference in that 1/2mg too low lets the inflammation build up slowly to the stage of a flare while 2mg too low lets it build up faster. Either way eventually the bucket fills up and overflows and you are in the same state you were originally. The fatigue is an integral part of the autoimmune part of the PMR, the pred doesn't do a lot about it. Except the fatigue plus the inflammation makes you feel even worse.

You are the only person who can change that - you need enough pred. Nothing else makes a difference.

I use a water filter made by Zero. Highly recommend

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Hidden in reply to Ronswife

I will look for that on line thanks

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