Hormonal Hell....Scream!

[Misfit Toy]

It's been really bad. When someone says, I've had a horrible day, it's so hard for me to not say, "I have had a horrible 6 years." This is a very negative post, so I apologize.

I feel lifeless. Absolutely no zest. I have had a few weeks of horrible. Hell. There is no other word for it other than, torture.

Right before my last period, I started the not sleeping. The night-sweats. The, "I feel like I just took a bath and jumped under my sheets" situation. And, someone or something just wakes me up, only to wipe my chest, my neck of this water. This salty water that is all over me. And, I fall back into some sort of sleep only to really be awake and then I wake in pain. Horrible pain all over.

I feel like I am dying.

After nights and days of horrible. Of exhaustion and horrible, I finally get my period. Finally would not be the right word. I am now getting my period early. Perimenopause, or premenopause strikes again. At age 43, I have been at this for years, but for the last year of horrible night-sweats and a lack of any energy. None. The night-sweats are recent. Two years of them, at this point.

And so my CFS, FM, CVID, pain and insomnia that I already had has become intolerable. Inhumane. It's not normal or right. And, I am on progesterone and yet it is worse. And I did BHRT to get worse.

I feel like my life is over. It feels over. For 12 days I had no sleep. Maybe 2 nights out of utter exhaustion. Lack of sleep would lead to pain that becomes out of control and I am forced to put on a pain patch, because the pain is that much worse. But, the Fentanyl pain patch causes me to develop a migraine. So, I leave it on only to have to take it off. These patches are supposed to be on you for 3 days. I can wear them for 6 hours.

So, bed bound due to hormones. Yes, from upright to not getting out of bed, but not sleeping either. Just crying. Crying, or writhing in pain. Sitting around, unable to write a check or make a meal. Avoiding, or when talking to someone, seeming NUTS. Disconnected and why wouldn't I be? I can't sleep.

I decide it's time that I MUST go to my doctor, for I can't go on like this. Mind you, before period....the week before I was due to get my period, I was doing okay. It wasn't great, but it wasn't hell. But to have 2 weeks of hell due to that time of month and "the change" is not normal.

As I am driving to doctor, CFS doc, which is an hour away.....the main turnpike is closed. All cars are at a dead stop and I am forced to get off at an exit that literally takes me into New Jersey. Another state. 2 hours later, I am home. I am in bed dead tired, never made it to doctor. But, that CLOSED sign over the turnpike and then the cops and fence closing down the pike made me feel, "this is a metaphor for your life." CLOSED. And, having to go so far out of the way to get back home. Traffic, dead stop, paying money for tolls only to have gotten nowhere. So, no help with sleep with an early wake up tomorrow to hopefully get to the doctor. Try again.

I reached out to a friend who had Lyme, a good friend who was crying. Her friend who lived near me, killed herself on Sunday. Yesterday. Her friend also had Lyme. I felt horrible. So bad for my friend and so bad for the woman who killed herself, but felt....happy for her, too. She got out! I know I am messed up if I am thinking that. Completely awful. Her friend with Lyme suffered with horrible untreatable migraines. Nothing worked for her. 15 years of Lyme with no help. No meds helped her. This whole thing made me feel worse. Sad.

Anyway, this whole hormonal thing for me, is worse than anything. IT is worse than anything I have been through with CFS, CVID, whatever it is I have. Endo was so bad. I had so many surgeries and so much pain, but at least I had hormones. I was more sane, I slept better, even with endo pain...then I do now. Now, they have switched over to where I have too many or too little all in a matter of a day. I can't take the inconsistency. The lack of sleep, the exhaustion. I was hot all during my period. So hot. It was 65 degrees out and I am walking around in shorts. I am always cold, this is not like me. Before perimeno, I lived. I thrived.

Now, I am dying. Or, I want to be. I hate this. And, I hate that this is downplayed. That menopause is not even talked about that much. There really isn't much on here about it. It effects well people horribly, let alone those with CFS.

 

[minkeygirl]

Menopause on top of this sucks. I was lucky I didn't get hot flashes but I feel dead inside most of the time, others I cry or am too sad to function.

I had my hormones balanced once and it was like the sky opened and the angels sang. It was wonderful. But I had a bad reaction to one of the estrogens and stopped and never got back to it.

My NP has said hormones play a huge role in this and it's on our list of things to do.

You've had a miserable day, things on top of things on top of things. You're allowed to be angry and bitch.

As for your comment about your friends friend being free. I do understand that. I have thought about ending things, even bought a book. It's nice to know that there is an out if I ever get to that point.

Don't know how else to help you. Life sucks.

 

[Misfit Toy]

Hey @minkeygirl -thanks. I know. Honestly, thinking about dying at times makes this whole thing easier. If I knew I could leave, it is a better option. I very much so believe in euthanasia and think it should not just be reserved for pets.

I feel for you. I know that dead feeling. I have that, too. It takes away any REAL positivity. Like positive emotions, or true energy. I used to get so excited about things, but now I can't. I feel too tired or have zero interest for anything for too long due to some mood swing. I will be on some sort of kick for something and then that very thing I was excited about ...that desire just falls out.

I like your explanation on what it was like to have things balanced. I have never had anything balanced. Hormones, all forms make this worse for me. When they put me on estrogen, I just totally stopped making any on my own and then my FSH level was 30, which meant that I was in menopause, but it was only happening because of the hormones. So, the GYN was like..."Ok, we are taking you off of estrogen. Your body or brain thinks you have too much estrogen due to the estrogen you are on, so it's totally stopped making ANY." Bizarre.

Anyway, thanks. Life does suck. It's good to hear someone else say it. I am tired of people thinking that everyone should smell the roses and look on the bright side. I can't. I am too tired and I sneeze when I smell them.

 

[minkeygirl]

I think too many people just don't want to talk about "self deliverance", but I really think something would be wrong with us if we were this sick and didn't. I like the idea of having a choice in the matter.

I have no hormones at all but what little I have, I have more estrogen so if I don't use an OTC progesterone I will get totally nauseated and then get migraines. And without balance I have zero libido. No amount of trashy novels has any impact.

Then some times it's like a switch has flipped in my brain and I'm sad, and paranoid and overwhelmed and I just have to wait for the switch to flip back so I'm back to my normal deadness.

The time I was balanced it was for 3 hours until I felt like I was on speed from one of the estrogens. And I was seeing a guy who really knows BHRT. I think it will take someone who knows ME and BHRT to help me out. But then there is the money thing too.

It sucks. That's all I gotta say.

 

[*GG*]

Sorry that people in our situation so often feel that way, I just think if most of us "offed" ourselves, than how will there ever be any progress in treating this illness(es)? Just seems to let people who should be doing research on a grander scale and our public officials in charge of battling chronic diseases and stopping epidemics (NY and NV etc) of the hook much to easily!!

Not sure how much we can do as house/bedbound people, do these emails do a thing? Sure hope so

GG

 

[Misfit Toy]

Hey @ggingues I am sort of thinking that I am tired of waiting for progress. It's been too long with this illness with no progress. That's the problem. People are offing themselves because of no progress. How long are we supposed to wait? I've been sicker longer than I've been well. I understand your thoughts, but come on already. And, so many of us don't have the energy to write anyone or get political. How many diseases and people out there are vying for attention from the government? So many diseases need their attention. Not just CFS and they are overwhelmed with people bitching and wanting help. I agree in fighting and at 15 years of illness, I had the fight and fought and wrote and petitioned and now...no thanks.

BTW, I am realizing that one of the reasons I may be having crazy ass periods is because I have been getting injections monthly for fibro and pain due to intercostal neuralgia of Cortisone. So, this may be the problem. A contributing problem as to why my periods have become erratic over the past few months anyway.

CORTISONE shots. But, what would I do without them because the pain, when I don't have my period is so much less. I swear, every medicine...damned if you do...damned if you don't.

 

[minkeygirl]

Maybe if more people did "off" themselves we might be noticed more. Not that I'm advocating that.

I remember when Dr Kevorkian helped a woman with FM. people said oh she's not terminal, how could you, totally minimizing the pain she was in. They didn't understand.


It's not up to me to judge anyone's pain, physical or emotional. Of someone was suffering that much I would understand their choice.

I hope, if I'm ever I that much pain, again not necessarily physical pain, to the point where I felt that was the only way out, that those who have seen me go downhill the last 20 yrs while understand and be glad I was free.

 

[minkeygirl]

Hey @ggingues I am sort of thinking that I am tired of waiting for progress. It's been too long with this illness with no progress. That's the problem. People are offing themselves because of no progress. How long are we supposed to wait? I've been sicker longer than I've been well. I understand your thoughts, but come on already. And, so many of us don't have the energy to write anyone or get political. How many diseases and people out there are vying for attention from the government? So many diseases need their attention. Not just CFS and they are overwhelmed with people bitching and wanting help. I agree in fighting and at 15 years of illness, I had the fight and fought and wrote and petitioned and now...no thanks. .

Exactly @Misfit Toy I am realistic enough to realize they are not going to find anything in my lifetime.

 

[Misfit Toy]

I've thought a lot about this. I think one of the best things one could do if they ever decide to end it is to write a letter to a newspaper, to family and make sure it's found on the internet, in the news, etc...that someone killed themselves due to CFS/ME. I think that gets attention more than petitioning or writing a letter. Again, also not suggesting anyone do this. BUT, if I ever decide I want off of this ride....I will make it an announcement as to why I am doing it. I will write a letter to the paper, to my friends, to my family and make it so that they and myself will carry out that I killed myself because I could not take this illness. Will it make a difference? NO, but people will listen and want to know what it is and will remember the name. When anyone commits suicide people want to know why. If you go to DC to speak with congress, etc...people don't care and they won't even ask why!

And, when my friend told me her Lyme friend killed herself, I thought....good for her! I was sad, but why the hell should anyone have to stick around just to make everyone else happy? This comment, "Oh, this person was selfish for committing suicide." Bullshit. It's selfish of anyone to ask me to stick around because of THEM. My pain is too much, this illness is too much, I and so many deserve an award for what we have put up with. Enough already.

 

[rosie26]

I'm sorry your having an awful time with your hormones Misfit. You remind me of how I was when I first started experiencing menopausal symptoms 2 years ago. Although I think my hormones have been out of whack for many years. I experienced some very good relief from some tablets I bought from a health shop.

It is called Promensil, I am not sure if it is suitable for you to try along with any medication you may be taking though ?. I am thinking of looking at hormone replacement in the near future but need to look into it more.
I am more optimistic about research, I think things are looking better for us. It could still be awhile yet, but it is looking better and we have more researchers taking an interest in ME now.

I know, having to go through menopause on top of ME is a blow and aggravates all the ME symptoms. Hope you can find some help, to help you get through.

 

[Misfit Toy]

Thanks rosie, I am starting to think that this most recent bout of problems with my cycle is due to the cortisone shots that I have been receiving every month. It's been great for pain, but it may be messing up my cycles.

ps. @rosie26 , I am quite happy you have found relief. I read your post about having hot flashes and they are not a good time! I was/am in perimeno, but I think these shots are detrimental.

 

[rosie26]

Thanks Misfit. Hope you are getting more rest these days.

 

[Misfit Toy]

Thanks, Rosie, here's hoping. Sleep fairy....lay your dust on me. I need it. My rheumatologist wants me to take the date rape drug for sleep, but it scares me.

 

[PNR2008]

I had horrible periods all my life, migraines, fainting, aching legs and cramps I hated all of it. When I stopped at 52 I said halleluia. My doc says but now you'll have to worry about bones and aging, I said who cares, I'm free, I'm free.

Well the migraines got worst but botox takes care of that and the night sweats still occur but randomly more CFS/ME and fatigue than anything else. That was one good thing that happened to my body. End of MENOPAUSE.

 

[rosie26]

Thanks, Rosie, here's hoping. Sleep fairy....lay your dust on me. I need it. My rheumatologist wants me to take the date rape drug for sleep, but it scares me.

Perhaps start out on a very tiny dose and see how you go? But yes it is scary. It took me 10 years to be brave enough to try melatonin.! I was so sick in the severe years, I didn't want to be touched, too weak to handle any side effects from tablets. Do what you think you are able to do. You do need to get some sleep, it may be helpful to you?

 

[Misfit Toy]

PNR, botox scares me. It made me really sick before, but I have migraines due to perimeno. I wonder!

rosie26, yes, I may try it, but it's VERY expensive. Like $3,000 a month. So, I have to have prescription coverage for it in the fall. We shall see.

 

[minkeygirl]

@Misfit Toy I'd try rohipnol. Someone here talked about it I think. I'm more scared of ambien.

 

[Misfit Toy]

@minkeygirl -at docs now. I want it out of desperation but I can't afford it. It's very expensive. Will find out soon.

 

[minkeygirl]

I know how you feel. It's horrible. It's probably cheaper to buy it on the streets.

Find out if the pharmaceutical company who makes it has an indigent program and you might be able to get it cheap.

I'll PM you later about some OTC stuff I take that works. I layer about 3 different things every night, changing each night.

 

[Misfit Toy]

Went to doctor. He prescribed Ketamine nasal spray and also Xyrem. I am going to go through the patient assistance program. Thank you for being in touch, @minkeygirl. Now, it's a lot of hurry up and wait. I am exhausted. I pray I sleep tonight. I can't take this. No sleep last night. I am hoping the Ketamine via nasal will help with pain.