Perimenopause and CFS...ughhh.

[Misfit Toy]

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:

 

[flybro]

Hi Spitfire,

Sorry to hear yr having such a crap time.

I had a hysterectomy at 27, I'm 44 now.

When what I now know was CFS synptoms kicked off the Doc put me on HRT thinking it was menopausal.

It was awful, i felt depressed and murderous. I came straight of them.

It is quite possable that I can't tell menapausal symptoms from CFS, but I rarely have energy, and when I do it is often fleeting.

My boobs can sometimes get really painful as well.

Have you tried Q10 for the CFS, it has been helpful for energy, for me.

Anyway sorry I have nothing to offer that may help, other than Q10 that you probably know about.

I'll hope that you get through to the otherside in a the blink of an eye.

Nice to meet ya.

 

[George]

Me 2 and 3 and 4

Yeah, my estrogen levels tanked in 04 (28) but I lost my sex drive in 01. I'm 46. Haven't had sex since 1999.

The doctor won't consider HRT because my blood pressure and cholesterol levels started going up at the same time the estrogen and progesterone levels started going down. Of course considering my med sensitivity (three years to get a set of blood pressure meds that worked and I didn't have really weird reactions too.) I don't think I would have been up for trying it anyway.

On the menses side, I keep hoping that I'll just give up the old red ghost and get to the other side quickly. Partially because it will be one less thing to mess with and maybe it will stabilize the energy level. Instead of going from a 20 to a 40 through out the month I'll just hang out at 30. (Bell scale)

So how do I keep going? Well, two things for me. One is that I practice radical acceptance. What the CFS didn't strip from me I tossed out. I don't believe that I will ever get my old life back. I don't believe that I will ever get my old energy back, I don't believe I will beat this DD. I believe that this is the next phase in my life kinda like going from 44 to 84, I just lost some years. My mom died at age 47, lymphoma. So I understand that I can't count on a normal life expectancy. I get what I get. The quality of it is what ever the quality of it is. I tossed out every preconceived notion of what life "should be" or "could be" and just accepted what it is"today". I like it, today I sat and watched the birds from my window all puffed up and looking for crumbs. I did that for hours as the sun came up. Pretty good why to spend a morning really. Better than downing coffee and and starting the review process for a 12 hour work day! (ha)

And I schedule 3 Pity Parties per year. (grins) Since I only get three, I sometimes schedule them months in advance. I invite one or two friends or my ex-husband or my aunt or cousin and I just rant, whine, bitch or what ever. I just get it all out. Then I feel better and don't have all that resentment and anger simmering under the surface. Love my pity parties. I highly recommend them.

See "Ye are not alone." (grins)

 

[Dreambirdie]

Hi Spitfire--

I have currently had more hormonal issues, as I'm getting closer to menopause. What I've learned is that balancing the hormones is DEFINITELY an ART, not a science. It takes a really competent and skillful practitioner, as well as a great deal of masterful self-observation and constant re-adjustments.

When the ovaries begin to slack on their hormone production, and eventually to stop producing all the hormones they once did, the ADRENALS have to take over the job. With CFS, we are all pretty adrenal depleted, so this adds even a bigger burden to them. So anything you can do to support adrenal health can be helpful. There is a whole slough of herbal adaptogens to pick from for this purpose... like eleuthero root, schizandra, ashwaghanda, rhodiola, holy basil. (I take most of them in rotation). Pantothenic acid (B5) is great too--(I take up to 5 grams/day), and the P5P form of B6. If you can tolerate DHEA, this can also provide a big boost for the adrenals. Personally, I found that the 7 Keto DHEA was MUCH MUCH more tolerable for me. I couldn't handle the straight DHEA at all, as it became estrogen in my system, and caused a lot of agitation. Getting to bed EARLY and making sure you eat regular meals with PROTEIN at each one--in order to keep your blood sugar stable, has been absolutely essential too.

As for the hormone balancing, I have used some of the bio-identical hormones without much of a problem. You can get them made at a compounding pharmacy with a prescription at a very very low dose, and build up as needed. I recently began a higher dose of progesterone cream. (I posted about this on another thread.) It is giving me some clear benefits, but getting the dose JUST RIGHT will take some time. It's the one hormone that FEELS most useful for me right now, in that it relaxes me, helps me sleep better, relieves some of the inflammatory reactions, and raises my libido. It also shrunk a HUGE breast lump that recently appeared, which was the size of a peach pit, and it did so in 6 days.

To get a good picture of where your hormones are at, the saliva tests (I've used the ZRT Labs) can be helpful. The results will give you a good place to start. But ultimately it takes a lot of trial and error to find the EXACT right combinations.

SO that's what I have to offer. Good luck with it.

 

[Misfit Toy]

I did the BHRT with horrible effects. I was so sick. I was nuts on estrogen and even the plant estrogens that are "natural." I was tested for allergies to hormones and the BHRT was the worst way to go. I came back allergic to estrogen, DHEA and progesterone. I continue to take progesterone though. But the estrogen made me a crying psycho.

Also, cortef, which so many can handle, I cannot at all. I used to. I was fine on it. Now, I can't take it. I am having to go the supplemental route.

Anyway, thanks so much for your input.

Oh and George, I allow a pity party for myself at least once a day! 3 a year?? I have IC, endometriosis, Fibromyalgia, eczema and so many physical problems. I believe at least one point throughout the day, you are allowed to feel sorry for yourself especially when you can just about function.

 

[Martlet]

The best thing for me was progesterone cream made from Mexican yams. I didn't really expect it to do much when I ordered it off the internet but it halted hot flushes AND increased my sex drive... definitely a bonus.

 

[Tammie]

Just wanted to say that you are not alone, by any means....I'm going to be 38 in a couple of weeks and though I have not been diagnosed with perimenopause, I have had hormonal levels tested and (though I am on the pill) they could not find ANY estrogen or any testosterone.....I am also very low in pregnenalone, DHEA, progesterone, growth hormone,& T3....the Dr cannot figure out what my body is doing with the pill, but oddly I see a HUGE difference when I'm on it vs not on it.....this is esp weird as I cannot tolerate taking most other meds or hormones (even in tiny doses)

 

[Misfit Toy]

Thank you Tammie! What I think is interesting is when I was on estrogen and progesterone, my blood levels were even worse! What does our body do with what it's given to us is a mystery to me. You are lucky you can take the pill. It makes me sick as a dog. Plus, I have a history of blood clots so...nope. Can't do it.

 

[Alex]

I can sure relate

I've had CFS since I was 32 but for the last 3.5 years it has gotten exponentially worse (I'm now 47). This so happens to be about when I started going through perimenopause. Around the same time I started having horrible stomach problems on and off and finally found some relief with 1 medication after trying several that didn't work. To add insult to injury I had one of my adrenal glands removed last January as it had an aldosterone producing tumor that was causing high blood pressure. The anesthesia made me sick for months. I have severe fatigue, new joint and muscle aches and pains and sleep issues related to night sweats. Some days I really feel like my life is not worth living I'm so sick. I've tried natural progesterone but it didn't seem to help. The irony is I've never had PMS, never tried the pill, have low body fat/BMI, a ridiculously healthy diet and used to be a marathon runner before I got sick. No matter what I try I don't feel better. I just keep hoping once I'm thru menopause maybe it'll be a little better. It's interesting to hear someone else with the same issues. Oh, and libido: completely missing in action - much to my poor, sainted husband's chagrin.

 

[Sushi]

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, 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

 

[starryeyes]

Hi Spitfire,

Welcome to the Forum. I had CFS for about 15 years before I went into perimenopause. You know when it's happening even though there is no blood test. Have you visited PowerSurge.com? I love reading the new posts on their board. I didn't join there but I sure do get solace from reading what other women are going through.

Thank goodness for them because I found out everything I'm experiencing is normal. And I don't mean most women experience it. Some of us are very unlucky and have a horrible time with perimenopause. Most women just sail through it. But there were 40,000 women belonging to PowerSurge last time I looked and how many countless others just read there like me?

I can't believe how much worse I am. What gives me solace is when women who are older than me with CFS say they used to bedridden and now they're just housebound, which is still bad but not as horrible. I'm mostly bedridden now.

Did you know that women who are healthy can become totally disabled from perimeno alone? It's not that uncommon.
That just blows my mind but again, give me hope for the future as many say it gets better.

I can't take hormones either and acupuncture didn't help me at all. My accupuncturist finally said that my system, specifically my internal themometer was broken. That's from CFS. She said her AIDS patients responded better than me. I live in the San Francisco Bay Area.

Tammie, the low-dose BCP and probably other BCP have more hormones than HRT. Amazing huh? My advice is to stay on it if it's helping you but make sure there's no history of breast cancer in your family.

When you say your hormone levels were even worse on BHRT, Spitfire, do you mean they were low or non-existent?

To make things even more confusing, our hormones are supposedly spiking a lot during peri, so who knows if the tests would reveal something else on a different day or at a different time?

 

[Lesley]

Bioidentical progesterone was miraculous for me

I realize now that my symptoms first started after pregnancy. I couldn't function for two weeks of each month. I had taken the pill for years, but after pregnancy it made my symptoms worse. I found a good doctor who prescribed a low dose of bioidentical progesterone cream. It was as if the fog had lifted! I felt like my old self.

Somehow, the bioidentical hormones act differently in the body. Maybe you could tolerate tiny doses.

Good luck.

 

[hope love light]

Your Preaching To The Choir Sister

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:

Dear Spitfire,

I am so glad to read your post because you sound just like me... it almost brought me to tears to know that someone is going through the same thing and understand how I feel.

I too have had CFS for 20 years and I am going through peri-menopause at 46, it started last year and I have gotten sicker than a dog. My life as I have known it for the past 10 years (which was no picnic) is over and I am in bed and/ or a prisoner in my own home most of the time. I have vertigo, can't think, can't sleep, eat all the time out of constant hunger and sex drive and sex itself is a distant memory.

I also am seeing an acupuncturist / naturopath with not much in the way of results. My adrenals are so shot... I took licorice for two months and it was going really well... then boom it went back to crap again. that was devastating.

I also don't do well in the fall and I don't know why that is.... anyway thanks for the post and please email me and let me know how you are doing we have ALOT in common and I would really like to keep in touch!

P

 

[Ocean]

I know this is an old thread, but in case anyone checks it: for those of you who've had hormones tested, can you have your obgyn or endocronologist do it or are these the kinds of tests only more alternative practitioners do, like naturopaths and such? My hormonal symptoms each month make my CFS so much worse. Thank you!

 

[Misfit Toy]

Wow. I posted this awhile ago. Starry, my hormones were lower on bio-identicals. My doc, said, "get off of them, your FSH is 18. On the hormones, you are practically in menopause." It was nuts. I can't take hormones and progesterone does nothing for me, I think it may help the migraines I have developed due to peri.

A few years ago, I was running around, going out, I had CFS, but I was functional. I had to rest often. Since peri, I can barely function at times, no one takes it seriously. My mom always says, "I sailed right through it with no symptoms."

Sometimes my sex drive is through the roof, other times, I don't ever think of it. It's a distant memory. Cobwebs have formed down there. I don't have a man in my life which I think is ok, because he would need to lift cars.

My adrenals are the worst thing from the whole experience. I can't deal with stress at all. It was not so great before, but now, I hide under desks. Kidding, but you get the point.

Right before this hit, I traveled, I went out with my friends, I was thin. Now, I rarely go out, I can't travel, I have gained weight, I can't sleep, my fibro is through the roof. That's one of the biggest things, my fibro is awful. All due to lack of hormones.

And, I have no vitamin D. I think I am getting a prescription of it.

OCean, I had both Western med docs see I was in it and I had specific Great Smokies tests. Especially for the adrenals. Every western med doc confirmed it and then the saliva spit tests I had.

Also, I don't go on Power Surge. I should, but after 3 years of this crap, I am more used to it and I get it now.

 

[Ocean]

Thanks Spitfire for the info.

 

[soxfan]

Spitfire- I know this is an old thread but I actually just noticed it...yes I went through peri/meno with CFS and it was so debilitating for me. The exhaustion was so much worse and I had to completely change my life just because of meno. I was doing just okay with the CFS but when the peri hit it was like being thrown into a brick wall.
I had to cut back my work hours by half..couldn't even think of going out to dinner or with friends at night. I had to be resting by 1pm every afternoon. We once went to visit my son in NC and during the walk around UNC I actually had to go back to his apt. and lay down whle the rest of my family took the tour. It was horrifing. I could go on and on but it just brings back bad memories. I am completely through now but of course I still have CFS and my body has completely changed(for the worse) in my opinion. I never took any hormones or anything thing like that during this...I knew I would have reacted badly.

I use to go on power-surge but I always seemed to feel the worse on there with the fatigue etc...couldn't relate there. My thyroid and adrenals also went crazy at this time as well. You can PM me if you want because I have been there.....

Kim

 

[Ocean]

How do you know when you're going through perimenopause? Do wildly irregular cycles mean anything?

 

[rydra_wong]

Spitfire,

Have you had your vitamin D levels tested? In my memory I thought u were complaining about terrible PMS symptoms (like I had) and
I used to tamp those down with a 3x/day dose of cal/mag pills (as was determined by some doctor to help the average female with pms) ...indeed I would eat cal/mag pills like crazy and one time went to a clinic to have my calcium measured (after my 3xdose) and it was low).

After menopause I had my genes mapped as things were getting harder to make work and I find I have the VDR genetic defect (vitamin D receptor) and need 7000 units Vitamin D/day. Now I no longer have problems with calcium and I believe this would have erased PMS for me at a younger age. I do not know if any component of what you are experiencing could be called PMS, but to ME - menopuase is PMS-FOREVER and so may be peri-menopuase. Test your Vitamin D status and disregard the lab ranges. Your Vitamin D should be 70. It can range higher but at some point (around 100) it changes your ph so that you can get urinary tract infections easily. And you don't want that. But if you get it above 70 and it is say 80, that's fine. Just shoot for 70.

You need testosterone to feel desire. When I started up my DHEA supplements it made me crazy horny! And I can make that happen at will. All I have to do is let my DHEA wane a little bit (say leave off the evening dose. Then after taking the morning dose the next day it will throw me right in to "bunny mode". It is the rise in testosterone that does it. (It's very disconcerting if it is not what you want and much better to keep a level amount of testosterone via a level amount of DHEA in your system).

I think there is a way to get you to tolerate hormones because they are natural. (Same as there is a way to get me to tolerate iodine -- I just haven't found it yet! But have faith - we will find the ways!) Have you tried JUST DHEA, not pregnenolone or progesterone? Some people can't tolerate the progesterone and pregnenolone makes that. So you would start with the DHEA (getting yourself out of the intolerant toward hormones state) and afterward add the pregnenolone. I think I mentioned to someone else that DHEA only persists for 20 hours so you need a staggered dose. If you let yourself get depleted it will feel like it's not really working or not working right or you will have psychological problems on it (I did anyway - panic, anxiety, or just being a hopeless slug).

I have to say that I do not have ME/CFS. But I have 18 genes broken, many in the methyl cycle, worse genes than anyone I have met, and I am able to function -- I just can't keep up with my friends! (Right now I am hyper to the max from chemical reaction to flea products that I have to keep reapplying to my pets).

So I don't know if this is any help. But to my mind the key to banishing PMS is Vitamin D in doses of 7000/day. It is not unusual to have a VDR genetic mutation...in fact it is very common. If you do not have it you probably still need at least 2000 D/day.

 

[rydra_wong]

Spitfire, to deal with stress you need DHEA. The ratio to tolerate the most stress (the youthful ratio) is DHEA:cortisol 10:1.
You don't need a perscriptiion for D - I would NOT get one. If you do it will be a 1 pill per week honking huge dose and you will feel ILL on it. You need a daily dose and there is no prescription for that. Here is what I take: http://www.evitamins.com/d3-10000-iu-superior-source-13487
(this is not where I get it from but I could not find it on iherb...dunno if they discontinued it or I am just blind). I take 5000/day and twice a week I take 10000/day. Alternately I buy the 10,000/day version and skip a few days a week. The goal is to take 50,000/week which si the prescription dose.