Sticky Blood-Hughes Syndrome Support
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Problems with Health Diaries

I have many times tried to complete a daily health diary

However this seems almost impossible for me ! When I go to fill it in I often have such a long list of ailments that it is depressing males me feel worse, let alone how much paper I'd need :D

I am symptomatic everyday varying degrees but the list is always long there is no way and consultant would have time to read through everything !

Today I woke up with severe pain in my kidney and migraine legs (knees) locked cannot string words together so have assigned myself to a day on the computer researching and reading other proples experiences -

Does anyone else have problems with thier kidneys ?

And then when I go into clinic and Doc asks are you ok my mouth says not bad - when in truth I feel like screaming no my life is **** !

3 Replies

Hello, yes I get days like this... and often have kidneys that hurts... more notice being taken now i have finally passed a few tests. I always find any form of virus makes my eyes itch and my kidneys hurt - and results in a 'does she take sugar' sort of day. Hope you feel better soon. Mary F x


Mary thank you no doc has ever associated my kidney pains with my APS and your right my eyes are icthing like hell today, viscotears out of the draw now !

Hadn't realized till you said it

"Few tests" ??? which tests ??

- I had an extensive U&E test the recently in preparation for my MRI (eGFR Estimated Glomerular Filteration Rate) this came back that for my age my Kidneys were working below par where as normal U&E come back fine ?

Still doesn't explain pain though hey ;)


Gaul: When you feel as though you want to scream that you feel like ... doo-dah in your MD's office, you should just say it to him. (I'm sure he's not hard of hearing and you can scream for your own psychological pleasure at home, I go to the forest preserve personally) It's a ligitimate symptom. You wouldn't even have to bother screaming if your diary indicated it. What seems so long and complicated to you on those days, really is an organizational issue. The symptoms are basically the same, so that is a constant. Then go down the line rating 1-10 and 0 if the symptom does not appear that day. Add your psychlogical state of the day to your list. So you don't have to string words together if that is the symptom of the day, you only need to number a list already made out for each day in the month, just like your calendar (but you need more room). On the days that you can write, do it. You will be surprised at how seriously your MD will take that journal because they are programmed for documentation. Having the symptoms as a constant all he has to do is run down your scoring to get a quick idea of how " in general" symtpomatic you have been since your last visit. Your last visit is also right in front of him for comparison. I know it seems like you are doing a job they should be doing but the object is to get the right diagnosis for the right symptoms so the right cures may be applied. Also, it really helps you keep your own handle on it. You'll be surprised how many times you will refer to it to see if you have ever felt this or that before. Have I had that rash before or am I just imagining it? You will know. I'm just a safe road traveller on this journey. But, I hope you give this a try to see if a diary is manageable for you. It can provide a lot for your history down the road when we and the medical commmunity know more about this disease. It is inevitable that we will eventually, as it seems to me they are becoming more aware of the diagnosis.

Best of luck on your journey. Prayers, smiles and lots of luck.


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