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Hormonal Hell....Scream!

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@Misfit Toy I hope you get some relief. Nothing you can do now but wait but at least the doc is helping you.

Is your not sleeping pain related or sleep problems or both?
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@minkeygirl, it started as sleep problems with night-sweats and then went into pain. Now, it's both. A vicious cycle. The sleep is more an issue. I can be in no pain and not sleep. Hormones.
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
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.

I'm two and a half years post and the added fatigue has been the worst part of menopause for me. As this started the same time as the hot flashes, I'm hopeful that when the hot flashes go away, so will the added fatigue and low stamina. Fingers crossed! After going through peri/meno hell for almost five years, CFS by itself will probably look pretty good. :rolleyes:
 

SDSue

Southeast
Messages
1,066
@Misfit Toy Looking back, I lived with mild ME/CFS for a long long time. Menopause was a major factor in pushing me off the cliff to a housebound/bedbound status. It was hell. Still is at times.

I'm sorry you are suffering. I know the pain, the emotions, and the desperation. I'm glad you vented.

@PNR2008 Botox has been suggested by my docs, but it scares me. Did you have no side effects?
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
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.

Isn't Xyrem for people who can't stay awake? I thought you had insomnia??
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I am scared to take either one. I have to wait because the Xyrem is not something you get instantly. I have to be approved. @SDSue , that's what I am frightened of. That because of perimeno and then meno....my life will be over. It is over. That I will be housebound/bedbound. I wasn't that before it so I am in a depression.
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
I am scared to take either one. I have to wait because the Xyrem is not something you get instantly. I have to be approved. @SDSue , that's what I am frightened of. That because of perimeno and then meno....my life will be over. It is over. That I will be housebound/bedbound. I wasn't that before it so I am in a depression.

Misfit, I think a lot of women feel like their life is over as they go through menopause; I know I've certainly felt like that at times. From what I'm being told by other women, is that we will come out the other end and feel like we have our lives back again. It might not be exactly the same as before, but it will be good again. Well, as good as life can be when you have CFS/ME. :cautious:
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I was actually thinking today, should I have my one ovary taken out? But, that could make it worse. I just don't know anymore. When I was younger with Endo, I was so sick and now I am sick. Losing the hormones is making me sick. I was young when this started. 37 years old. Now, I am 43. I am still so young. Doesn't meno start in the late 40's? I've heard it can start in the late 30's it's just so damn long. And, I probably have a long way to go.
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
I was actually thinking today, should I have my one ovary taken out? But, that could make it worse. I just don't know anymore. When I was younger with Endo, I was so sick and now I am sick. Losing the hormones is making me sick. I was young when this started. 37 years old. Now, I am 43. I am still so young. Doesn't meno start in the late 40's?

Perimenopause can start a good 10 years before menopause happens.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Yes. It has. I may have a while to go. I am 6 years in, but some it lasts for 15 years. UGH.
 

PNR2008

Senior Member
Messages
613
Location
OH USA
@SDSue, Botox for migraines was the best thing I ever did. I get them by a nuerologist about every 6 - 9 months and seldom get a migraine if one breaks through they are mild and over with quickly. I tried them for a head tremor but it didn't work because my neck muscle are too weak.
 

PNR2008

Senior Member
Messages
613
Location
OH USA
When I got ME/CFS, it was so sudden that many people said it was early menopause even though my periods were more less regular. It angered me that at 38 all my horrible symptoms were dismissed as meno. Yes some of them are similar hot flashes/night sweats but I could tell the difference. Mood swings that preceded periods were not CFS/ME but the depression I got with CFS/ME was monumental.

Both problems made each other worse but early meno was not my big problem, ME/CFS was and those who said "early meno" with such authority made me feel like I should just go in a corner and wait until it's over and be a good girl. As bad as meno can be it's a natural occurrence, ME/CFS is not. I knew I had something different and scarier.
 

SDSue

Southeast
Messages
1,066
When I got ME/CFS, it was so sudden that many people said it was early menopause even though my periods were more less regular. It angered me that at 38 all my horrible symptoms were dismissed as meno. Yes some of them are similar hot flashes/night sweats but I could tell the difference. Mood swings that preceded periods were not CFS/ME but the depression I got with CFS/ME was monumental.

Both problems made each other worse but early meno was not my big problem, ME/CFS was and those who said "early meno" with such authority made me feel like I should just go in a corner and wait until it's over and be a good girl. As bad as meno can be it's a natural occurrence, ME/CFS is not. I knew I had something different and scarier.
Agree totally. I searched desperately for answers, envying those women who thought meno was so bad because the had hot flashes. I would have killed to only have hot flashes. It's just too easy for docs to blame women's hormones for everything - it's happened throughout history.

While we may not have gone thru meno before, we have lived in these bodies for many years prior and we have observed meno in our families and friends. We instinctively know that something is horribly amiss. You'd think doctors would be able to make the same simple observations. Don't get me started lol.
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I am about 2 years post and for me the emotional rollercoaster has been the absolute worst. It has made me think about the "thing" that people don't want to talk about more than any other time with CFS. I have read on menopause support groups that this is not that rare. I am going to try BHRT.....once AGAIN. I am grateful in that I have a close friend who I can share all.......and I mean all thoughts with...............poor guy............he's heard it all...........has listened with patience as all my emotions come crashing in............and he never gives up on me. I've shed buckets of tears in front of him and he always tells me it's OK to do so...........We do share laughs also.....thank god. Long story short...hormonal hell can be devastating.
 
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PNR2008

Senior Member
Messages
613
Location
OH USA
@Tammy, I am so sorry that you have suffered with meno, I did too but I was so grateful when the periods stopped and the migraines were taken care of that I felt stronger to deal with the ME/CFS. I would never want anyone to think that meno isn't a big, horrible problem. What has science done for us in that regard?

Take care I wish you the best of luck.
 

SDSue

Southeast
Messages
1,066
Are we talking about two different things here? For "normal" women, the transition to menopause, or perimenopause, can be difficult, emotionally and physically. But I find it hard to believe that normal perimenopause is devastating.

That's a very strong word. Devastating is defined as "ruinous" or "catastrophic". Normal perimenopause allows women to continue with their lives, make plans for the future, and "get thru it", albeit sometimes with great difficulty and medicinal help. By definition, the transition is temporary, ending upon "menopause".

ME is devastating. ME ruins lives. ME is catastrophic. ME is not temporary. I don't know of a single woman who lost her career, home, hopes, plans, family, etc to menopause. I know of many who lost all that and more to ME.

I tend to think that our experiences with perimenopause are worse than average and can be very confusing, simply because they are mixed in with all the ME stuff. It's hard to know where one ends and another begins. Unfortunately, the hormonal upheaval is a known trigger for worsening ME.

I know it's semantics, but while I am living with this truly devastating disease, I'm sensitive to the term. Or maybe it's just my hormones talking ;)
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
If you are feeling bad enough physically or mentally to have suicidal thoughts.......which some women do.......either peri or meno...............I would call that devastating. (doesn't matter if it's short term or long term)..... Yes..............ME is devastating.............I've had it for 18 yrs...............I do not use the term lightly.
 
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SDSue

Southeast
Messages
1,066
If you are having suicidal thoughts.......which some women do.......either peri or meno...............I would call that devastating. (doesn't matter if it's short term or long term)..... Yes..............ME is devastating.............I've had it for 18 yrs...............I do not use the term lightly.
We might just have to agree to disagree on this one though. I'm gave up trying to change people's minds a long time ago - just stating mine.

That said, I'm very sorry you've been ill so long. Also, I kinda love the sign in your photo.