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Perimenopause and CFS...ughhh.

Messages
33
I am 39 and was diagnosed with perimenopause about 2 years ago. I have had CFS for 21 years. Well, this takes the cake. I am sicker than I have ever been. My estrogen and other hormones are so low.

I am majorly depressed and my sex drive is non existent. Even with just CFS, I always had a smidgen of some drive. Now, not at all. I feel so different.

They put me on hormones. Well, as most with CFS, I reacted to everything. In fact, I became worse and my hormone levels with blood were worse on hormones. My adrenals have tanked too. Due to perimenopause, every year is getting worse.

I did acupuncture with no success. None. It is so costly and I can't afford it anymore. I need to choose treatments wisely due to financial problems. I am on disability. I have no prescription coverage.

Has anyone else gone through this? I feel so beyond alone and I can't find another woman with CFS who has dealt with this and perimeno/menopause. It's awful.

I feel like if this is how life will be from here on out...with no hormones, exhaustion and no lust for life, what is the point?? I can't even take antidepressants to combat the depression that comes along with hormonal problems.

:worried:
Hello,

I am in the same boat as you at the time you posted this. Please tell me what's going on with you now. Did you find any remedies that helped you?
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Susan Murphy, not sure if you are a guest, but you are not showing up. NOTHING has helped. I would like to tell you something wonderful has happened. I can't believe that I was 39 when I wrote that. Going on 43.

I have continued being quite sick due to the change. I am worse than I have ever been.

Last year, my cycles were nuts. I was getting my period every 2 weeks. Now, I am skipping. I get it every other month or I get it on time, but it only lasts for a day or two. Then I may bleed mid month. Night sweats have made it horrible.

I have no energy, this year has been horrible work wise and I am miserable. I have food allergies that are uncontrollable and that started when my hormones tanked. IT changes who you are, changes your personality, your CFS, my IC got much much worse.

I have done the hormonal route with no help. I have become worse. I tried using Estrace recently and even that which is an external medicine got into my system and my breasts became so tender and I couldn't sleep. Estrogen doesn't calm me down, it revs me up. My latent endometriosis started going nuts to.

I used to go on vacation, but I can't anymore.

Herbs can help, but the acupuncturist I see doesn't understand CFS and therefore has failed at treating me. She keeps saying, "I am stumped by you, everything I try, you don't get better." I want to go to her for herbs, but I hate her for saying that to me. Even my GYN, who I dropped, recently told me, "you are not text book, I don't know what to tell you."

I wanted to have my ovary removed. I only have one ovary. She won't do it. Not sure if that's a good idea, but I am sick of waiting to go into menopause and my fibro pain right before my period leaves me drained and sick.

I hope that helps. I am sure it won't. I, or we need a magic wand. I had a life before this hormonal hell.
 
Messages
33
Susan Murphy, not sure if you are a guest, but you are not showing up. NOTHING has helped. I would like to tell you something wonderful has happened. I can't believe that I was 39 when I wrote that. Going on 43.

I have continued being quite sick due to the change. I am worse than I have ever been.

Last year, my cycles were nuts. I was getting my period every 2 weeks. Now, I am skipping. I get it every other month or I get it on time, but it only lasts for a day or two. Then I may bleed mid month. Night sweats have made it horrible.

I have no energy, this year has been horrible work wise and I am miserable. I have food allergies that are uncontrollable and that started when my hormones tanked. IT changes who you are, changes your personality, your CFS, my IC got much much worse.

I have done the hormonal route with no help. I have become worse. I tried using Estrace recently and even that which is an external medicine got into my system and my breasts became so tender and I couldn't sleep. Estrogen doesn't calm me down, it revs me up. My latent endometriosis started going nuts to.

I used to go on vacation, but I can't anymore.

Herbs can help, but the acupuncturist I see doesn't understand CFS and therefore has failed at treating me. She keeps saying, "I am stumped by you, everything I try, you don't get better." I want to go to her for herbs, but I hate her for saying that to me. Even my GYN, who I dropped, recently told me, "you are not text book, I don't know what to tell you."

I wanted to have my ovary removed. I only have one ovary. She won't do it. Not sure if that's a good idea, but I am sick of waiting to go into menopause and my fibro pain right before my period leaves me drained and sick.

I hope that helps. I am sure it won't. I, or we need a magic wand. I had a life before this hormonal hell.

Susan Murphy, not sure if you are a guest, but you are not showing up. NOTHING has helped. I would like to tell you something wonderful has happened. I can't believe that I was 39 when I wrote that. Going on 43.

I have continued being quite sick due to the change. I am worse than I have ever been.

Last year, my cycles were nuts. I was getting my period every 2 weeks. Now, I am skipping. I get it every other month or I get it on time, but it only lasts for a day or two. Then I may bleed mid month. Night sweats have made it horrible.

I have no energy, this year has been horrible work wise and I am miserable. I have food allergies that are uncontrollable and that started when my hormones tanked. IT changes who you are, changes your personality, your CFS, my IC got much much worse.

I have done the hormonal route with no help. I have become worse. I tried using Estrace recently and even that which is an external medicine got into my system and my breasts became so tender and I couldn't sleep. Estrogen doesn't calm me down, it revs me up. My latent endometriosis started going nuts to.

I used to go on vacation, but I can't anymore.

Herbs can help, but the acupuncturist I see doesn't understand CFS and therefore has failed at treating me. She keeps saying, "I am stumped by you, everything I try, you don't get better." I want to go to her for herbs, but I hate her for saying that to me. Even my GYN, who I dropped, recently told me, "you are not text book, I don't know what to tell you."

I wanted to have my ovary removed. I only have one ovary. She won't do it. Not sure if that's a good idea, but I am sick of waiting to go into menopause and my fibro pain right before my period leaves me drained and sick.

I hope that helps. I am sure it won't. I, or we need a magic wand. I had a life before this hormonal hell.
 
Messages
33
Hello again spitfire,

Thank you for sharing. Common sense tells me things will mellow out when our hormones mellow out! It's hard to think clearly when feeling so miserably! The worst of it is having to feel so awful. It's an added bonus that we must deal with how other people react to us! As for me, the change in hormones has done something to my adrenaline. It makes sense that the adrenal glands have to work extra hard to make up for the slacking ovaries. I have no noticeable adrenaline, even when I should. Before I started getting hot flashes, this was not the case. I had 28 years of CFS with noticeable adrenaline, sometimes appropriate and sometimes not. I am working with a naturopath. First area to address is hot flashes/night sweats. So far biodentical hormones have not helped. Waking up 5 times a night will make anyone more tired. However my increased fatigue is due to something other than interrupted sleep. I've had nights with little sleep before, and they didn't feel this bad. Please keep in tou
ch. Am I allowed to type my email address?
 
Messages
33
Hey Spitfire,

Been there too! I am past the ups and downs (post menapausal) but still find a tiny dose of DHEA helps in a lot of departments. When I was in the screamin, flamin perimenapause period,:eek: I tried conventional hormones--felt horrible! Then found a really good doc who did regular saliva testing and gave me the right blend of bioidenticals--magic! He adjusted as needed. I know you have tried them, but there are different routes to take them that have different effects--oral, transdermal, and vaginal.

Also, pregnenalone helped me. The key may be a really knowledgeable doc.

Best wishes,
Sushi

I am 39 and was diagnosed with perimenopause about 2 years ago. I have had CFS for 21 years. Well, this takes the cake. I am sicker than I have ever been. My estrogen and other hormones are so low.

I am majorly depressed and my sex drive is non existent. Even with just CFS, I always had a smidgen of some drive. Now, not at all. I feel so different.

They put me on hormones. Well, as most with CFS, I reacted to everything. In fact, I became worse and my hormone levels with blood were worse on hormones. My adrenals have tanked too. Due to perimenopause, every year is getting worse.

I did acupuncture with no success. None. It is so costly and I can't afford it anymore. I need to choose treatments wisely due to financial problems. I am on disability. I have no prescription coverage.

Has anyone else gone through this? I feel so beyond alone and I can't find another woman with CFS who has dealt with this and perimeno/menopause. It's awful.

I feel like if this is how life will be from here on out...with no hormones, exhaustion and no lust for life, what is the point?? I can't even take antidepressants to combat the depression that comes along with hormonal problems.

:worried:
 
Messages
33
Hey Spitfire,

Been there too! I am past the ups and downs (post menapausal) but still find a tiny dose of DHEA helps in a lot of departments. When I was in the screamin, flamin perimenapause period,:eek: I tried conventional hormones--felt horrible! Then found a really good doc who did regular saliva testing and gave me the right blend of bioidenticals--magic! He adjusted as needed. I know you have tried them, but there are different routes to take them that have different effects--oral, transdermal, and vaginal.

Also, pregnenalone helped me. The key may be a really knowledgeable doc.

Best wishes,
Sushi


Hello Sushi,

So, did you have CFS before you went through the change, and now you're done with hot flashes? Did you experience increased CFS symptoms during that fun time of change? Is your fatigue level now comparable to what it was before you noticed your hormones changing?

Thank you!
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Susan, can you email me on here? That way only I will see your email address.

I stand by the fact that lack of hormones is by far the worst thing to have happened in my 24 years of CFS. I was working, then perimenopause hit. Goodbye job, boyfriend, friends, the ability to focus, sleep, function. My adrenals tanked. No reviving them.

Another sucky thing? No one can tell you how long this will last. My last GYN said possibly 5 years, possibly 10.

10 years, no way. All I could think to this response was; pill overdose, buying a gun maybe, assisted suicide? At least it would be over! Totally over. Crazy thinking, I know.
 
Messages
33
I am 39 and was diagnosed with perimenopause about 2 years ago. I have had CFS for 21 years. Well, this takes the cake. I am sicker than I have ever been. My estrogen and other hormones are so low.

I am majorly depressed and my sex drive is non existent. Even with just CFS, I always had a smidgen of some drive. Now, not at all. I feel so different.

They put me on hormones. Well, as most with CFS, I reacted to everything. In fact, I became worse and my hormone levels with blood were worse on hormones. My adrenals have tanked too. Due to perimenopause, every year is getting worse.

I did acupuncture with no success. None. It is so costly and I can't afford it anymore. I need to choose treatments wisely due to financial problems. I am on disability. I have no prescription coverage.

Has anyone else gone through this? I feel so beyond alone and I can't find another woman with CFS who has dealt with this and perimeno/menopause. It's awful.

I feel like if this is how life will be from here on out...with no hormones, exhaustion and no lust for life, what is the point?? I can't even take antidepressants to combat the depression that comes along with hormonal problems.

:worried:

I am 39 and was diagnosed with perimenopause about 2 years ago. I have had CFS for 21 years. Well, this takes the cake. I am sicker than I have ever been. My estrogen and other hormones are so low.

I am majorly depressed and my sex drive is non existent. Even with just CFS, I always had a smidgen of some drive. Now, not at all. I feel so different.

They put me on hormones. Well, as most with CFS, I reacted to everything. In fact, I became worse and my hormone levels with blood were worse on hormones. My adrenals have tanked too. Due to perimenopause, every year is getting worse.

I did acupuncture with no success. None. It is so costly and I can't afford it anymore. I need to choose treatments wisely due to financial problems. I am on disability. I have no prescription coverage.

Has anyone else gone through this? I feel so beyond alone and I can't find another woman with CFS who has dealt with this and perimeno/menopause. It's awful.

I feel like if this is how life will be from here on out...with no hormones, exhaustion and no lust for life, what is the point?? I can't even take antidepressants to combat the depression that comes along with hormonal problems.

:worried:
 
Messages
33
Susan, can you email me on here? That way only I will see your email address.

I stand by the fact that lack of hormones is by far the worst thing to have happened in my 24 years of CFS. I was working, then perimenopause hit. Goodbye job, boyfriend, friends, the ability to focus, sleep, function. My adrenals tanked. No reviving them.

Another sucky thing? No one can tell you how long this will last. My last GYN said possibly 5 years, possibly 10.

10 years, no way. All I could think to this response was; pill overdose, buying a gun maybe, assisted suicide? At least it would be over! Totally over. Crazy thinking, I know.


Well, I don't know how to email only you. My email address is Suekmurphy@cox.net. Please email me! :0)
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Susan, that's fine but for future reference, you click on my photo. It either says send a message or start a conversation with The Spitfire. That way you can email people privately! Will get to you.
 

GracieJ

Senior Member
Messages
772
Location
Utah
So far, black cohosh has been an absolute lifesaver for perimenopause symptoms. Stay tuned. :)

My symptoms are not typical. I have atypical hot flashes, the type associated with stroke risk. :confused: They feel like heat stroke and last 45-60 minutes, after which I am so tired I just have to sleep. Have only had 3 of those, thank goodness. As long as I stay on the herb, I am fine. Almost no symptoms. I cannot imagine hot flashes -- the sweaty kind -- and other things on top of me/cfs. What a nightmare that would be.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hello Sushi,

So, did you have CFS before you went through the change, and now you're done with hot flashes? Did you experience increased CFS symptoms during that fun time of change? Is your fatigue level now comparable to what it was before you noticed your hormones changing?

Thank you!


Yes, I had ME/CFS before menopause. I didn't have an increase in symptoms because I took bioidentical hormones throughout perimenopause and menopause.

BTW you might want to edit your post and remove your email address as the forum is indexed by Google and anything you post here is public! The "conversations" we use here, are private.

Good luck!
Sushi
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
I hope you all are ok. I have a little add-on story, with a good ending:

I balance hormones and CFS but the last couple of months everything tanked and nothing helped and in the end I was not safe to be alone anymore because I was ready to pull the plug.
Even though I knew it was hormones and not me I could not take it anymore. Not when HRT didn't help and menopause was dooming on the horizon.

as a last resort, two days before I'd have myself committed or killed (yes. really.), I upped my vitamin D.
The depression lifted within 45 minutes. :alien:

I felt aghast and betrayed and flummoxed and relieved and enraged.
Later that day the depression returned and I took more vit. D. Again it went away.

This was last week, 3rd of March. Now I keep it at bay. Am a bit hyper at times. Npc is working again.
Need serious rest from the ordeal. Still very angry. And happy.

Just wanted to chime in in case this helps anyone.

In my case, my vit D receptor is not working properly and I've been on 50 mcg of vitD3 most of last year. Back in Octobee my blood levels were finally good (60-80) and doctor said: now take halve the dose.
We both forgot that I started methylation which uses a lot of vitD and that in Winter everyones vitD levels drop.
So on 25mcg of vitD3 my levels dropped below 60 all during January. February was hell. And then it became unbearable.

Now I'm on 65mcg per day. Less and I get weepy again. Not depressed, thank the stars.
I wonder wether my blood levels are meant to be higher than the recommended range (60-80) because of those receptor problems. (VDR Tag)

Also: lots of breast pain because I lathered on the npc-cream because they hurt so much those two months. Also took 100 mcg Progesteron every day. Second half of cycle 200 and sometimes 300 mcg. Didn't do a thing. It didn't even help me sleep. I thought the pills where past their date or something. Got new ones. Nothing.
I even suspected the factory had changed its recipe or something. Or that they were scamming.
 
Messages
1,082
Location
UK
I've just wrote a post about the effects of peri on me and i seem to be the only one who is being affected positively by it (so far)
Ive noticed changes for last 2 years since hysterectomy but no changes to the ME.
Only since hellish hot flashes started a month ago i'm feeling quite good for first time in 16 years. This was already confusing me but after hearing of others negative experiences i'm now even more confused unless its just a phase to make the most of while it lasts