Just needed to be heard for a little while

haybel19

Waves_and_Smiles wrote: »

That's wonderful LIR! It does respond very well to antibiotics, I have been taking them for it for 19 years. Mine does flare if I stop them but as long as I remember one daily my skin stays clear and unswollen. I really hope things continue so well for you!

Interestingly, when I was first diagnosed with it I was immediately tested for Lupus as I had the classic butterfly flare on my face. Four tests for Lupus came back clear for me over the years even though I had all of the symptoms, but the last test was positive (love how it is called positive). My consultant told me that in some people the blood test doesn't show it for a long time even though they have it, it seems that was the case with me which if true means I have likely had it for 19 years without diagnosis. That would account for the frequent infections then...

I had something similar with my Rheumatoid Arthritis whereby i had many negative tests despite very clear symptoms before later testing positive. Like some of you I also have more than one autoimmune illness; as well as the RA I have Pernicious Anaemia and regular B12 injections.

Waves_and_Smiles

Isn't it odd how autoimmune disorders do that, haybel? I honestly had more symptoms of Lupus than friends who were diagnosed with it but every test came back negative, even my doctors thought I had it! It was actually a relief to get a positive result oddly enough, at least we could start treating it then.

I am sorry to hear you have more than one disorder, you have my total sympathy because I know how tiring it is.

haybel19

I find it hard having two conditions which both cause extreme tiredness. Do you find the same? I know it is a common symptom of autoimmune illnesses.

Waves_and_Smiles

Oh, I really do. Some days I can't manage anything at all other than getting out of bed and getting to the sofa. On days like that and for the days that follow I really need to take things easy and attempt very little or otherwise I will just make myself even more ill. Often I have to be careful about taking too much on at once, too or I can cause a flare of one condition or another which means all of my best plans to do anything for the next week go out of the window. It is a balancing act.

Pyxis

I once did a little bit of endocrinology study as part of a biochemistry course , years ago, and it is really fascinating. As you say, the interactions between hormones and precursor hormones is incredibly complicated. Just a tiny, tiny blip in one precursor can upset a whole cascade.
I know we've touched on this before, but I would have thought that for an endocrinologist, especially one interested in research, trying to find the biochemical causes of conditions such as yours would be exciting.
I know it's down to funding, but when you think of the hundreds of conditions that might be improved by just one major breakthrough, it does seem strange.

The other interesting thing is how the biochemistry changes with age. So many physical illnesses, even ordinary ones like chest infections, can manifest primarily in the elderly as confusion, which could be mistaken for senility. Even a minor level of dehydration can result in confusion! Mind you, getting elderly people to drink regularly can be very difficult, as they say they're not thirsty, or are worried about 'accidents'.
It's so easy to jump to the wrong conclusions. Someone having an insulin hypo, or someone in the throes of a stroke, can appear drunk, and be dismissed as such with disgust. If someone doesn't even smell of drink, it's more likely that they're very ill!

lostinrates

Waves_and_Smiles wrote: »

That's wonderful LIR! It does respond very well to antibiotics, I have been taking them for it for 19 years. Mine does flare if I stop them but as long as I remember one daily my skin stays clear and unswollen. I really hope things continue so well for you!

Interestingly, when I was first diagnosed with it I was immediately tested for Lupus as I had the classic butterfly flare on my face. Four tests for Lupus came back clear for me over the years even though I had all of the symptoms, but the last test was positive (love how it is called positive). My consultant told me that in some people the blood test doesn't show it for a long time even though they have it, it seems that was the case with me which if true means I have likely had it for 19 years without diagnosis. That would account for the frequent infections then...

I was excited to test negative for lupus this year. Oh well. May be if still needed they'll test me in a couple of decades:rotfl:

whitewing

http://www.dailymail.co.uk/health/article-2708901/Revealed-The-hormone-gel-banish-depression-women-Its-revolutionary-discovery-lives-countless-women-currently-given-antidepressants-transformed-using-simple-rub-gel-instead.html

A good article in the mail about the progesterone surge at ovulation, and potentially treating it with oestrogen gel. It may be worth printing this off and discussing it with your psychiatrist, WaS, as it maybe helps explain the psychosis.

lostinrates

Pyxis wrote: »

I once did a little bit of endocrinology study as part of a biochemistry course , years ago, and it is really fascinating. As you say, the interactions between hormones and precursor hormones is incredibly complicated. Just a tiny, tiny blip in one precursor can upset a whole cascade.
I know we've touched on this before, but I would have thought that for an endocrinologist, especially one interested in research, trying to find the biochemical causes of conditions such as yours would be exciting.
I know it's down to funding, but when you think of the hundreds of conditions that might be improved by just one major breakthrough, it does seem strange.

The other interesting thing is how the biochemistry changes with age. So many physical illnesses, even ordinary ones like chest infections, can manifest primarily in the elderly as confusion, which could be mistaken for senility. Even a minor level of dehydration can result in confusion! Mind you, getting elderly people to drink regularly can be very difficult, as they say they're not thirsty, or are worried about 'accidents'.
It's so easy to jump to the wrong conclusions. Someone having an insulin hypo, or someone in the throes of a stroke, can appear drunk, and be dismissed as such with disgust. If someone doesn't even smell of drink, it's more likely that they're very ill!

Yes, you'd think. The thing with the endocrine problems is they are such a tangled knot. Read the symptoms for a load of them and they sound so similar. Consider too some can be cyclical or recede at times, its very hard to pin point.

IMO its not at all surprising endocrine/ rhemotological problems come in 'bulk' because if one part of the system breaks down in the complicated whole it confuses other bits.

I didn't know there was much wrong with me until I became unwell, then everything went haywire, and continues to do so overtime. But it makes sense to me. its why people like us need to make sure we maintain our 'structures' a little better than others need to if we want them to last. Like a house, ones with quirky features need a bit of tlc sometimes to keep 'em upright.

Edit: if you think of hormones as the communications system of the body, of they are not working correctly the body is operating more like Chinese whispers than clearly expressed speech I guess.

jobbingmusician

oldestgnome wrote: »

Pyxis, I thought the shopper was JM:o

Shhhhh - yes, I am the shopper! Sorry for confusion.

I'm still reading, even though I haven't had time to post properly. I haven't been doing any thanks so I know how far back I have to go to read properly when I get back home!

whitewing

It is glorious weather today so I walked up to the doctor's after I'd got the washing on the line.

I am so proud of DD. Yesterday evening I took her to the park in a nearby town as a special treat for an hour. She had made a new friend as soon as she walked through the gate, so they ran off to play together before I'd even sat down. The new friend was slightly older and even bossier. I had to laugh as DD kept coming back to me to give me a running commentary of everything the other girl suggested. It was a new park with different types of equipment so DD tried quite a few things that she hadn't done before.

I thought of you, WaS, as I was sitting there. When there is so much going on at home, especially if you are in survival mode, it is really difficult to give yourself the added stress of interacting with people. If you haven't been out trying new things then you also have the embarrassment as a child of not being able to do things that other children can. I am hoping that DD is realising that she can be friends with a range of people, and that will build her expectations that people she encounters are friendly. Then she will probably find most of the world meets those expectations.