Too Much Progesterone and Pushy People-Because it works for them, it must work for you.

[Misfit Toy]

A month ago, I had that horrible migraine from hell that I spoke about at length. A friend of mine, a very pushy friend brought over progesterone cream and felt strongly that I need to take it. She is 62 years old. I am 44. She felt that I should take it all month long instead of just the 7th day of my cycle onward. She wanted me to do so to completely stop my period which I know would cause more problems than not.

I went on the progesterone-90 mg-out of desperation, but took half the dose and actually started to feel better. I refused her idea to take it all month long. However, a month and a half later...I have become completely unstable. I took it to my doctor 2 weeks ago and he was like, "Wow...this is too high of a dose. This is for menopausal women." Because I felt like I was doing well on it, I had no desire to go down on it.

Today, after 6 days of being in bed...which is so rare for me. I mean, that never happens...and heart pounding, racy thoughts and mind and anxiety for weeks now, I thought, "this has to be the progesterone."

I called the pharmacy and they told me to stop taking it, it's too high a dose and it's probably messing up all of your hormones.

I am to go on 50 mg in a few days.

I have become completely introverted, isolating and sick. I am snippy, angry, etc. I have the air conditioner on when it's 75 degrees. I am so hot and sick.

This friend who recommended this has been up my butt for years about things that I need to try. I have written about her several times. She thinks of me as a very close friend, I am starting to see her as the enemy. She doesn't leave me alone with what I need to try and do. I am always supposed to be doing whatever she recommends. She will never try or do anything I recommend, but I am supposed to.

Have any of you ever noticed that because something works for someone, it means it's supposed to work for you, too? I have had people absolutely become cruel unless I do what they want me to for my health. I have had friends with Lyme disease who think I have lyme and want me to go on several different antibiotics, all kinds of stuff. I am tested for Lyme every year, always negative....but, "The tests aren't accurate, you have Lyme disease."

Why can't people just let you "be." I understand wanting to help someone, but to distance yourself from them because they are upset that you don't want to do what they want you to do is wrong.

Since I have become more sick, she is pushing and pushing me to go to the guy who does methylation at $350 an hour. I put my foot down last week and told her, do not mention this person again. I never want to hear his name again unless you are talking about your own appointments with him.

People don't seem to realize that just because something works for them, that it might not work for someone else. And more importantly, we are all allowed to have and make our own choices.

I am happy that she introduced me to progesterone. I am unhappy that she keeps pushing it and pushing everything at me and that I think I will have to end my friendship with her. We have been friends for 13 years. I have tried everything to get her to leave me alone about people that she wants me to see or supplements she wants me to take. She doesn't listen or respect my wishes. I am sick of it. I see it as a sickness she has.

She listens for a short time and then just avoids me. She avoids me. I am only a friend to her really, when I am doing something that she thinks I should do.

I think this goes for all people and even those with CFS/ME; if something works for you, that's great. If someone else is reluctant to try it or is not on the same page...that is their right. It doesn't mean they are a bad person, that they are not worthy etc. I have lost so many ill friends...yes, ill friends because I didn't do well on "their protocol." It's BS. I would never ever do that to someone else.

 

[rosamary]

You really need advice from someone qualified in hormone replacement etc to sort you out. Trying out someone else's medication (and it IS medication) is not a sensible thing to do.

I don't think it is a good idea to make a decision about your friendship when you are clearly not very well.

(But I know what you mean about people coming up with lots of ideas of what you SHOULD experiment with to get well. I used to get heaps of advice which grated on my nerves an awful lot. )

 

[*GG*]

You might want to ask for her medical degree, not that we always think that means much. Also, maybe you can just tell her to back off?

GG

 

[JaimeS]

First of all, @Misfit Toy, I'm sorry you're feeling so ill right now.

I think that everyone wants those around them to feel better. Here on PR, we discuss many things that have helped us, and encourage others to try those things. After that, though, the decision should rest with the person receiving the advice.

I also think that there's a power struggle there. Your 'friend' wants to look after you not ONLY because she wants you to feel better, but because she wants to feel powerful and important. She wants to feel responsible for your recovery. In an ideal world, afterward, you'd wander the earth singing her praises. Also, you'd be a convert, further spreading her ideas regarding what will make everyone well again. And you'd be sure to mention her name every time you discussed your miraculous recovery.

There is a certain personality that's dogmatic and views medicine in a near-religious light. Just like all religions, you have the devout, the evangelical, the Sunday churchgoers, the agnostics, and the atheists. This lady sounds like the first two! Their protocol is their dogma, and if you won't try it, you're an Unbeliever and must be cast out.

That said, I agree with @rosamary , 100%. Find a hormone doctor and also wait until the storm has cleared to talk to this lady. You want to be as clear-headed as possible when you explain that her suggestions made you far worse, and to ask her not to make ANY further recommendations in the future.

-J

 

[Misfit Toy]

I have told her to back off numerous times. She doesn't listen. EVER.

@rosamary -I agree with you, however, I am in physical therapy twice a week for a wrist and a disc in neck. I am up to my eyeballs in docs, etc. I did it out of needing to do something due to a 5 day migraine at the time of menstrual cycle. Maybe not wise, but when sick and unable to get out of bed...desperate measures.

As far as the friendship...I honestly don't get enough out of it. We either talk about how or what I need to do or....she doesn't talk to me.

 

[Misfit Toy]

It's funny. Everyone loves her. Loves..."she is so sweet." She is as sweet as candy. Overly. But they don't know her. I know a different person. She is a people pleaser. And a control freak. If we go out to eat, we only eat where she wants to eat. She can only eat at certain restaurants. This one is too loud, this one has horrible chicken, this one plays Sinatra...and she hates Sinatra. So, we do and go where she wants and do what she wants. Over it.

 

[Kati]

A month ago, I had that horrible migraine from hell that I spoke about at length. A friend of mine, a very pushy friend brought over progesterone cream and felt strongly that I need to take it. She is 62 years old. I am 44. She felt that I should take it all month long instead of just the 7th day of my cycle onward. She wanted me to do so to completely stop my period which I know would cause more problems than not.

I went on the progesterone-90 mg-out of desperation, but took half the dose and actually started to feel better. I refused her idea to take it all month long. However, a month and a half later...I have become completely unstable. I took it to my doctor 2 weeks ago and he was like, "Wow...this is too high of a dose. This is for menopausal women." Because I felt like I was doing well on it, I had no desire to go down on it.

Today, after 6 days of being in bed...which is so rare for me. I mean, that never happens...and heart pounding, racy thoughts and mind and anxiety for weeks now, I thought, "this has to be the progesterone."

I called the pharmacy and they told me to stop taking it, it's too high a dose and it's probably messing up all of your hormones.

I am to go on 50 mg in a few days.

I have become completely introverted, isolating and sick. I am snippy, angry, etc. I have the air conditioner on when it's 75 degrees. I am so hot and sick.

This friend who recommended this has been up my butt for years about things that I need to try. I have written about her several times. She thinks of me as a very close friend, I am starting to see her as the enemy. She doesn't leave me alone with what I need to try and do. I am always supposed to be doing whatever she recommends. She will never try or do anything I recommend, but I am supposed to.

Have any of you ever noticed that because something works for someone, it means it's supposed to work for you, too? I have had people absolutely become cruel unless I do what they want me to for my health. I have had friends with Lyme disease who think I have lyme and want me to go on several different antibiotics, all kinds of stuff. I am tested for Lyme every year, always negative....but, "The tests aren't accurate, you have Lyme disease."

Why can't people just let you "be." I understand wanting to help someone, but to distance yourself from them because they are upset that you don't want to do what they want you to do is wrong.

Since I have become more sick, she is pushing and pushing me to go to the guy who does methylation at $350 an hour. I put my foot down last week and told her, do not mention this person again. I never want to hear his name again unless you are talking about your own appointments with him.

People don't seem to realize that just because something works for them, that it might not work for someone else. And more importantly, we are all allowed to have and make our own choices.

I am happy that she introduced me to progesterone. I am unhappy that she keeps pushing it and pushing everything at me and that I think I will have to end my friendship with her. We have been friends for 13 years. I have tried everything to get her to leave me alone about people that she wants me to see or supplements she wants me to take. She doesn't listen or respect my wishes. I am sick of it. I see it as a sickness she has.

She listens for a short time and then just avoids me. She avoids me. I am only a friend to her really, when I am doing something that she thinks I should do.

I think this goes for all people and even those with CFS/ME; if something works for you, that's great. If someone else is reluctant to try it or is not on the same page...that is their right. It doesn't mean they are a bad person, that they are not worthy etc. I have lost so many ill friends...yes, ill friends because I didn't do well on "their protocol." It's BS. I would never ever do that to someone else.

All agreed. Suggestions and pushing for what has worked for them happens all the time, yet most people don't necessarily know the person's medical history, the contraindications and side effects that hasn't happened to them.

It should also serve as a warning here on this forum for those who are very quick at offering quick advice.

 

[Misfit Toy]

@Kati -thank you. That is exactly what I am trying to say. I have had people on this forum offer advice, want to be my friend, etc...but when I decide..."Nope, I am not trying this or doing that" they disappear. It's like the only reason they are a friend is because I am to try what they had work for them and they will take me under their wing and show me the light...it's not right.

I remember years ago having CFS/ME friends just because we were in the same boat or had the same disease and had some interests. That doesn't really happen anymore. Now, it's about being friends because I will be doing what they recommend. And if I don't...."hasta lavista, Misfit Toy."

It hurts.

 

[Kati]

@Kati -thank you. That is exactly what I am trying to say. I have had people on this forum offer advice, want to be my friend, etc...but when I decide..."Nope, I am not trying this or doing that" they disappear. It's like the only reason they are a friend is because I am to try what they had work for them and they will take me under their wing and show me the light...it's not right.

I remember years ago having CFS/ME friends just because we were in the same boat or had the same disease and had some interests. That doesn't really happen anymore. Now, it's about being friends because I will be doing what they recommend. And if I don't...."hasta lavista, Misfit Toy."

It hurts.

Yes. first, we are human beings. Then each one of us is completely different than each other. This disease has many different presentation and 'personalities' if you will. Some have so many drug and food intolerance, and others don't. Some swear it's a fatiguing illness, they feel tired, while others feel sick. some relapse and remit, and for others it is progressive. Many of us have other complicating factors and co-morbidities.

Friends respect each other and their journeys. Each of our journey is unique, with its up and downs. Being a friend is offering a shoulder to cry on, a hand to hold and a smile to share. The medical side is only one aspect of the whole person. So being a friend should be about respecting these private boundaries and stop trying to fix people. We all know there are no quick fixes and most around here have a physician to oversee the whole picture.

As for here on the forum, each one of us should wonder about the message that is being shared, what the person is asking. Is it advice? Is it emotional support? Is it just a chat, its it company? If the person is in need of support why are people saying that Herb X has helped in that kind of situation?

 

[Hip]

@Misfit Toy

I have used progesterone cream to good effect for my anxiety (progesterone may be a NMDA receptor inhibitor, 1 as is magnesium, which I find helps reduce anxiety).

However, the daily progesterone dose I used was 10 mg, which is considerably smaller than your dose of 90 mg (although note that I am male).

When I tried a higher dose of 20 mg, I found this caused a disturbed sleep: my sleep felt too light, and I was unable to fall into a deeper, more restful sleep.


Progesterone has been shown to inhibit the antiviral Th1 immune response, and promote the Th2 response. So high doses for long periods might not be such a good idea in ME/CFS.

 

[Kyla]

Sorry to hear your friend is being a jerk.

This is what I think of every time someone tries to give me unsolicited health advice :

 

[Gingergrrl]

MT, ironic after our recent discussion! Trust your instinct and you know your own body better than anyone else. And of course confirm with the doctor that you trust.

There are people out there who are both smart re: illness being different in each person AND kind/supportive and it is possible to find them. The ones who are not quickly reveal their true colors.

I have three very close friends who live locally and none of them ever try to push treatments on me and just want to listen and help. They ask questions or mention things they hear about but it is never pushy or with judgement. The friends who push treatments or abandoned me when I got ill are no longer friends.

 

[Misfit Toy]

@Kati - all that you wrote is so on point. Thank you! You said it much better.

@Gingergrrl -You are so lucky to have friends like that. Right now it's hard for me to reach out to friends when I am so sick because I am not really functional. They would hear in my voice how ill I am and they (mostly) have kids and enough on their plate. But yes....I can't deal with this treatment pushing. Enough. Yes...to our recent conversation....so true...the irony! Ugh.

There was this photo on Pinterest a few years back that I LOVED. It read..."Please write down all of your advice on a piece of paper and place it in this lovely can." The can was a trash can! So funny! It would crack me up. I can't find it!

@Hip -thanks for letting me know that...good to know!

 

[Effi]

@Misfit Toy
you mean this one?

 

[Misfit Toy]

ha ha has....@Effi...yes, it was like that, but for people who give advice to anyone. Unsolicited advice to even normal folks (as in, not ill.) It had a woman sitting at a desk with a small trash can on the desk....

I love it!!

 

[Misfit Toy]

I just looked up what too much progesterone can do. 31 % of women who take it have daily headaches. That's what I've been having. I honestly just thought it was from my herniated disc in neck.

Here's hoping when it really leaves my system that these headaches subside.

Last night was another night of lousy, I can hear everything sleep with intense memorable dreams...

Ugh. My fault for taking it. Still, her fault for pushing it on me, too. When I let her know what had happened yesterday vis text, her response was..."Bummer. I was fine taking it at 46!"

Yes, because you are you.

 

[L'engle]

When I took progesterone a few times as a cream it instantly made my thyroid sore and overactive. I never took it again! but it was a cream I got online and it might be different from the ones people get as a prescription, I don't know.

But what I do know is I am also totally sick of people who try to use us as a 'project' to help them feel smart and knowledgeable and useful. It often seems to be people who have an gap in their life or else control issues. They love to be the one who knows, the one who can help, but the problem is, they can't. Their advice is ludicrous and their empathy skills sub-average. Looking at how these people run their own lives often shows a very flawed method in how they cope with their own problems. So sick of these stupid power plays and people assuming that because I am ill they can dominate and control. Ugh. Lever and trapdoor time. And the assumption that sick people will be so desperate for companionship that we will put up with it, oh I don't even want to start...

For me personally I'm talking about mainly people in real life. I haven't encountered this type of parasitic behavior on-line.

 

[rosamary]

There is an amusing side to the 'Advice Givers' problem.

Imagine if you obediently did all the things suggested:

Give up gluten
Give up eggs
Give up wheat
Give up alcohol
Avoid cats
Take b supplements
Have more vitamin c
Have more calcium
Vitamin D
Eat organic
Avoid stress
TAKE PROGESTERONE
oestrogen (have some!)
Drink green tea
Give up coffee
Drink 20 litres of water a day!!!!
Do this
Do that

(Just imagine!! )

SO : maybe a good idea is to say:

'Thanks. I've already tried that.'

(Just tell a lie)


(That's MY advice anyway!!!!)

 

[JaimeS]

...I like to help people and feel useful. Does that make me a bad person?

The woman in MT's original post is a rude, overbearing woman. However, I wouldn't want newbies to come here thinking that their thoughts and ideas are not appreciated. And I wouldn't want to think that if someone posted regarding a problem that people on PR would feel tentative about offering ideas/solutions because they worried it might come across as preachy or demanding.

Sometimes what we want is simply reassurance, or kindness. Sometimes we've already decided what we want to do about an issue, and don't want to get sidetracked or derailed by other suggestions. In that case, I think we should state what it is that we want from an interaction, especially online where it is so easy to be misunderstood. "I already know what I want to do about this; I just need a little support", etc.

People can't know what we want unless we tell them.

-J

 

[Misfit Toy]

@JaimeS -I don't think there is anything wrong with telling someone hey, this helped me. I think that is wise. I want to help people, too. However, when you post on an "emotional support" forum, it means you are looking for emotional support. If I post on a forum asking a question about a supplement, a test, it means I want advice. That is the difference. Sometimes, you can just tell by a post that this person is overwhelmed, sick, etc and what they want is to be heard and listened to by other folks that are in similar situation.


I really think people should think about this..

1) Do they know the situation of the person-(About me)that I have CFS, but other autoimmune problems like Sjogrens, CVID, Interstitial Cystitis and Endo and Fibro. What does this person know about the person they are wanting to "help."

2) Do they know the person's financial situation? (About me) Do they know I am on SSD, live alone, don't have money hanging from a tree.

3) What do they know about the person that allows them to assume that what they have to say would even be feasible, make sense, etc. (About me) Do they have my blood work in front of them? Do they have test results?

And one of the worst things...when you tell the person all of this and they tell you to borrow money from someone....seriously? WOW. Brazen.

Bottom line, you have to be in a good place to hear from people like this because they are cultish. My adrenals are not able and I am too overwhelmed to deal with the "YOU MUST DO THIS." They are sold on what they know and can't think outside of it.

Many like this can only relate to others who are part of the same tribe...as in, same treatments.

Last year I had someone tell me how to take pills, how to cut them, how to rotate and not take the same thing over and over. It makes sense. If I had a reaction to something...this person would say I need to be patient. I need to realize there will be setbacks and try it again. It went on and on and I felt like I was not meeting the "requirements" for how to do things with this disease in this persons mind.

I couldn't take it (the teaching, the advice when all I wanted was just to talk about how this disease sucked-this person had no time for being a friend but all of the time for advising) and when something makes me sick...as in in horrible body pain (which I live with, but it can become worse from a bad supplement or med) I MUST not take it, or I must back off, because I am already too sick and in disabling pain. My cup is already too full.

This person didn't suffer with pain. Couldn't understand my reluctance to take something again that just made me so sick. Had no clue. So, how can this person judge me as being what...weak for not keeping up and doing what this person wants me to do? The irony...this person who advised was so sick...they can't leave their home. I get out regularly. Doesn't mean I am enjoying myself, but I get out. I don't have POTS...yet and even when I am tired...I get out. I can work...not all of the time, but here and there.

Did I judge them because they are not doing as well as me? Nope. Yet I was judged because I can't take many meds.

I need to write this not to call out people, but because it needs to be read that this should not happen. We are sick people here with different situations and should not be judged. Unless I have your head in a vice or I purposely killed your cat, please don't judge me. Unless I am insulting to you on a forum, be nice.

There are many good people on here. I email a few people and talk to a few off of here through regular email and phone. They keep me going and send me photos of England, Australia, or wherever they are and we talk about what it's like to live with this thing. We send each other Youtube videos.

We don't mention (often) supplements to each other, or how or what we take or how it may help them...we talk like friends about things we deal with, with this crazy condition.

Or, if we do mention, "Hey, this has really helped me," if the other person is not up for it, hey, no problem. I have friends on here where we talk about treatments, too. It's respecting the boundary part and knowing...there is more than one way to skin a cat if I don't want to try what you recommend.

However, if I go onto a board and ask a question directly about a treatment....that is on me. 100%. I am clearly asking for advice and all bets are off.

I totally understand wanting to help people. I have wanted to help people and have recommended treatments. But if the person doesn't bother...okay, they have set a boundary and I respect that.