Author Topic: Maybe we need a new main topic called "hormones"  (Read 5546 times)

aprildawn

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Maybe we need a new main topic called "hormones"
« on: April 20, 2008, 01:02:17 PM »
Hi everyone and hope you are having a better week than I am.  I have been doing a lot of research on hormones ie testosterone, progesterone, estrogen, leptin etc.  I am trying to find a md to go to to have a total hormone workup.  I notice that pretty much all my symptoms flare about the 10 days before I start my period.  Does that sound familiar to anyone.  I went to herplace.com and it seems to correlate with alot of hormones/perimenopause.  I just want some relief,  I get so frustrated and the anxiety............and hurt all over.

It seems alot of people here talk about their hormones.  That includes female, male hormones and insulin and thyroid.  Maybe it could be a topic, I don't know.  I just wasn't really for sure where to put this.

I already take alot of vitamins but now going to add calcium. If I could only find a md that will take me and not take 6 months to get into.  I moved 1 1/2 year ago.  When I had my last pap smear I was bleeding afterward from a skin tear........not going back to her.  I need a little more compassion and knowledge from my healthcare provider.  Ouch!!!!!!    What do you guys think?

Aprildawn

faithful

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Re: Maybe we need a new main topic called "hormones"
« Reply #1 on: April 20, 2008, 04:51:02 PM »
aprildawn, I experience this same thing 10 days before my period. I too have asked the doctors to do a hormonal workup and none of them will.  One doctor said I have an anxiety disorder.  Yes, during that time my anxiety is more so.  Even before being d/x I could tell when pms was coming on b/c of the anxiety.
Since being d/x my doctor prescribed Klonopin to take each night before bedtime.  I was as resistant to medications, all meds.....never had been on any.  Now, I take Plaq, Restasis, Exovac and the Klonopin.  Since taking the Klonopin my sleep is so much better and when I have better sleep my days are better. 
I don't like being on the meds, not even the Klonopin but for now they help and I will take them.  Someday I hope to no longer need the Klonopin.  Just seems at this time in my life, at 46, this is what my body needs.
Let me know what works for you.  I did try for only a day or two Valerian Root, a natural sedative but it wasn't enough for me. 
I am wondering if once I done with my periods if all will settle down? I hope so.
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Scottietottie

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Re: Maybe we need a new main topic called "hormones"
« Reply #2 on: April 20, 2008, 05:17:57 PM »
Hi Aprildawn  :)

I'll bring it up the next time we have a staff meeting but it's potentially a huge topic. I'm through the menopause now and it was as I was going into it that all the autoimmune stuff came to a head.

I joined a thyroid forum at About.com, two menopause forums - one called menopause matters.co.uk and one called menomadness (at Yuku.com) and also a lupus forum. 

I found that a lot of symptoms overlap from all these things and it's pretty impossible to work out what is causing what.

I don't think we can be a menopause forum and a thyroid forum, although both things are discussed often, but like I say - it will be discussed at staff.

Take care - Scottie  :)
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aprildawn

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Re: Maybe we need a new main topic called "hormones"
« Reply #3 on: April 20, 2008, 09:02:40 PM »
Thanks,  My rheum says that hormones do play are large part in Sjogrens as it does with any other disease/syndrome.  She suggests I do have my hormones checked and alot of the info I have read states that in can exacerbate flares when you are not in "balance".  I will let you guysknow if I learn anything for sure more. 

Its always nice to hear someone you can relate to.  I take valium for my muscle relaxer and it seems to help alot but I hate taking it all the time.  I have librax for my stomach pain (???ibs) of my stomach not colon.  I still have the pain.  I don't take anything specific for anxiety.  My rhuem mentioned ssri or maybe hormones.  i just need to know where I stand on my hormones first.

I will keep ya'll posted!    Aprildawn

Scottietottie

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Re: Maybe we need a new main topic called "hormones"
« Reply #4 on: April 21, 2008, 06:20:12 PM »
Hi There  :)

We discussed a 'hormone' thread at the staff meeting but the vote went against it because it is potentially such a big topic and could wander down so many avenues.

If testing hormones is the issue it can be posted under 'Diagnoses and Tests' and for possible hormone treatments out there - well they'd fit in with 'Meds and Treatments'

Stuff that doesn't fit neatly in either of those places still fits into general discussion.

The topic can be revisited if this is not satisfactory and suggestions are always welcome.

Take care - Scottie  :)
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pixi

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Re: Maybe we need a new main topic called "hormones"
« Reply #5 on: April 23, 2008, 01:25:14 PM »
These conditions give a whole knew meaning to PMT  ::)  I have mini flare ups 10 days before my period. Recently I've started to get acne just after. I take Klonopin when I am having a nightmare of a night and cannot sleep, but try not to make it more than twice a month.


Quote
The topic can be revisited if this is not satisfactory and suggestions are always welcome.

Would a section for Related conditions be feasible? That way hormones can be discussed there. It may also help for people who want to know if their other conditions are related to SJS

faithful

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Re: Maybe we need a new main topic called "hormones"
« Reply #6 on: April 23, 2008, 03:50:23 PM »
pixi, I am within the 10 days of my monthly and I am flaring big time with much pain. 
I have not found anything yet to ease up.  Unfortunately I take Klonopin almost nightly but I pray a day will come where I will no longer need it. BUt for now, it sure helps me to get a good night's sleep. i am told that is what our bodies need the most, that restorative sleep.
I go to bed each night when my little one goes at 8:30. I stay in bed most morns. until 6:30 or 7:00.  That is what I need for now.  Thankgoodness I can.
If you find something to help with the flares during pms let me know? I heard calcium/mag works but I dont know.
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Scottietottie

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Re: Maybe we need a new main topic called "hormones"
« Reply #7 on: April 23, 2008, 05:08:41 PM »
Hi Pixi  :)

I'm not sure that medical experts are sure what part hormones play in the whole autoimmune spectrum and none of the staff here are doctors or students of any medical speciality.

I'm not sure that anyone of us can say for sure what is related to what either. Some of us have a hunch sometimes. Sometimes we're wrong. (Sometimes the docs are!)

Are related illnesses any of the many AI diseases out there? Then there are conditions like osteoarthritis, which a lot of people with no AI conditions suffer from and the medical profession don't seem to be able to sort out what pain is caused by OA and what is caused by Lupus or Sjogren's. It really is just such a potentially huge field. Menopause is not an illness but can make people feel really ill. Really bad menopausal symptoms are very similar to many SjS and thyroid symptoms. The thread turns into a 'how long is a piece of string' sort of thing.

Most things that aren't SjS can be posted in the general discussion under their own headings and when enough people post the thread stays 'within range'. The search facility can be helpful for finding old threads on related topics.

Take care - Scottie  :)
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gurs

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Re: Maybe we need a new main topic called "hormones"
« Reply #8 on: April 25, 2008, 12:21:30 PM »
As you can see from my previous postings, having horrible problems with my Sjogren's and "surgical menopause". I've had Sjogrens since I was just a teen and suffered from it over the years, but nothing prepared me for menopause with it. Im not talking about a few hot flashes, mood swings, dryness etc, that I could handle, Im talking about my whole body just flaring up a Sjogren's storm. I can barely talk, walk, swallow, function period. I have such terrible neuropathy pain all over...cognitive functioning gone totally. Ive tried several types of hormones and I cant even tolerate the mildest (bio) forms of it...my body is rejecting every single medication. It's been a nightmare, but I wont stop trying. Im sure there is a huge link between the two though.

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Scottietottie

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Re: Maybe we need a new main topic called "hormones"
« Reply #9 on: April 25, 2008, 05:49:47 PM »
Hi Gurs  :)

I kinda don't doubt there's a link. I didn't get dxd till I was well into menopause but the problems go back to puberty with episodes (flares maybe) after all 4 kids. I had a remission during my 40s and then everything came back with a vengeance and I literally did not know what to blame which symptom on. No one could tell me either.

I rejected HRT because I wanted one lot of symptoms behind me - or at least one cause of symptoms. I'm still having hot flushes (maybe not quite as often) but I'm pretty sure these aren't menopause. Maybe the first lot weren't either. How would I know? Flushing and sweating is flushing and sweating. (In my case usually from mid chest on up - and not elsewhere)

Take care - Scottie  :)
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Kaitlyn

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Re: Maybe we need a new main topic called "hormones"
« Reply #10 on: June 16, 2008, 05:42:45 PM »
Hey, y'all!

I also have been struggling with hormonal issues -- was just perusing the forums because my acne is *horrible* again! My chin looks like a 16-year-old's! It is soooooo embarrassing!  :-[

I don't know how this would work long distance, but I have seen Dr. Maureen Pelletier (http://www.lmihealth.com/pages_blocks_v4/index.cgi?plisting=2&pheader=1&pfooter=1&Key=22&Field=key&palias=&ptitle=&thisroot=/pages&pkey=22&catg=practitioners_bios&Exact=yes&this_sect=Practitioners%20Bios) about Bio-Identical Hormone Replacement and she is awesome! She ordered bloodwork and went from there.

If you can't get a local doctor to help, you may want to contact Dr. Pelletier.

K.

Joe S.

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Re: Maybe we need a new main topic called "hormones"
« Reply #11 on: June 16, 2008, 06:52:32 PM »
I do not know about the hormone issues that most of you face. I was told once that evening prim rose would help with my pain levels. I did not notice any improvements in my pain level but my breasts grew bigger. That was very embarrassing. I quit taking it.

I am now on Androgel. My beard used to grow fast. Now I shave once or twice a week which is better than it was with the evening primrose. Maybe Androgel will improve my beard growth.
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Heather Bell

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Re: Maybe we need a new main topic called "hormones"
« Reply #12 on: June 17, 2008, 03:14:41 AM »
Hi Aprildawn
I found your post and the replies about hormones interesting.
My experience is that many symptoms get worse in the 10 days to week before my period the ease off just before.
I have also noticed problems around ovulation also, so it seems both ends of the hormone seasaw cause problems for me.
I am not on any meds so I do not have that complicating my observations.
But I have also noticed that my heart problems also get worse at this time, probably of autoimmune origin but the angina is probably made worse by the increased tiredness even non SJS sufferers get at this time, what I am saying is it could be the extra hormonal tiredness making many things worse.

Lastly I did not see anyone mention the flare a lot of people have after giving birth - big hormonal change there!