Worse or better after menopause?

[bertie7]

I hope this is in the right forum category, apologies if isn't. I have had CFS/ME for 27 years this year. My ME/CFS symptoms always followed a pattern of being dramatically worse 5-6 days before ovulation (in addition to getting worse with high emotional/physical stress). I noticed this pattern about 24 years ago and it was so consistent and reliable (and painfully noticeable) I was able to go off birth control. As soon as I ovulated I returned to baseline symptoms which included pain and swelling but manageable - NOTHING as bad as pre-ovulations in which I swelled up to almost a full dress size and my lymph nodes ached to the point of migraines and nausea.

Two years ago I started Perimenopause and at the same time my symptoms took a dramatic turn for the worse, they became exactly the same as the flares I had during my pre-ovulation and it has been awful. I am no longer ovulating so don't get relief as I did before. I can't seem to find a lot of info about this but I believe it could be because both during pre-ovulation and in menopause FSH and LH hormones rise and unfortunately stay high in menopause. Some people say its the hormonal change that makes the CFS worse and that the body adapts to the change eventually but two years on I see no relief. Does anyone have any thoughts on this or experienced anything like it? I really appreciate any input and ideas. I am thinking of trying to find a doctor that will prescribe something to suppress FHS and LH to see if it makes any difference. Thanks very much

 

[LisaGoddard]

I sympathize with you.
There is a study somewhere or at least anecdotal evidence that ME worsens during perimenopause.

As I'm perimenopausal and have had severe ME for a few years, I recently decided to go on HRT. I don't know what I really expected but I've been on the treatment for two months and have noticed a big difference! My fatigue is very much diminished and my energy levels are more consistent rather than going up and down. It underlined the fact to me that my hormones were a contributing factor. Like you, I suffer from lymph node pain (which I control with cold bathing).

I don't know anything about suppressing FHS and LH but perhaps someone else will chip in who does know.
Take care,
Lisa

 

[bertie7]

I sympathize with you.
There is a study somewhere or at least anecdotal evidence that ME worsens during perimenopause.

As I'm perimenopausal and have had severe ME for a few years, I recently decided to go on HRT. I don't know what I really expected but I've been on the treatment for two months and have noticed a big difference! My fatigue is very much diminished and my energy levels are more consistent rather than going up and down. It underlined the fact to me that my hormones were a contributing factor. Like you, I suffer from lymph node pain (which I control with cold bathing).

I don't know anything about suppressing FHS and LH but perhaps someone else will chip in who does know.
Take care,
Lisa

 

[bertie7]

Thanks Lisa,

I appreciate the response, could you please tell me the HRT that you are using? Perhaps I can discuss the treatment with my doctor.

 

[PDXhausted]

@bertie7 When you say you were able to go off birth control, do you mean a non-hormonal form of birth control? Because oral contraceptive pills would suppress ovulation...

Anyway, I sympathize with you and am glad you brought this up, because my symptoms are greatly tied to my menstrual cycle as well. Although I seem to get flares corresponding to rises in estrogen/progesterone. I was on continuous oral contraceptive pills throughout my 20's to suppress endometriosis, and gradually developed CFS/ME symptoms that became full-blown at age 30. My symptoms were consistent daily while on birth control and now fluctuate with my cycle since quitting the pill, worse prior to ovulation and around day 21 of my cycle. It is like clockwork. I have not hit perimenopause yet (I'm 34) so don't have any experience there.

I am just starting cat's claw right now since I had some antibodies show up on a Lyme test and was having trouble tolerating antibiotics. Interestingly, the antibiotics helped both my CFS (or maybe Lyme?) and endometriosis symptoms, but were too hard on my gut. There is some evidence that cat's claw can block estrogen receptors and possibly help with endometriosis, as well as being immunemodulating and I think antimicrobial, so I'm hoping it will do something for me, but I haven't taken enough to know yet.

As far as suppressing LH.. Have you looked into black cohosh? I haven't looked into it enough to know whether it would be good for CFS/ME, but just a cursory search shows that it may lower LH.

 

[Navid]

i too have had worsened symptoms since entering menopause......very interested in HRT that is helping....what drugs are involved....wld love to find some relief from this living nightmare : )

thanks

 

[TigerLilea]

I am two and a half years postmenopausal and my CFS has been hell for the past couple of years. The fatigue and the post-exertional malaise are the worst that they have ever been in the 23 years that I have had CFS. I didn't find perimenopause so bad so it's been a bit of a shock to become this fatigued now that I am post. I'm hoping that this is just a temporary setback while my hormones adjust as I can't imagine being this exhausted for the rest of my life.

 

[PDXhausted]

@TigerLilea Did you notice if there was a fluctuation in your CFS symptoms with your cycle prior to menopause?

 

[Misfit Toy]

@PDXhausted , when I first came on here back in 2010, this was all I talked about. You can look up threads of mine about perimeno. I too am in perimeno, but my last blood work came back fine. I feel like a switch has been turned off. I was never so sick with CFS as when my hormones changes and I started having irregular periods, etc. I started at age 37. Very young. My progesterone and estrogen dropped and I was menstruating every two weeks.

My PAIN WENT THROUGH THE ROOF. I have had fibro for years, but it was okay. Nothing too bad. I stopped sleeping, my pain went nuts and like you, during ovulation, I swell and ache all over. I know exactly what you are talking about and I read your post and thought...she is speaking of me. My pain goes nuts right before I get my period and then the day before or the night before, it literally goes away. When I get my period, it's the only time I don't have TOO much pain. I don't get it.

I did BHRT to no avail. It made me nuts and worse, but that's just me. I was on estrogen, progesterone, DHEA and pregnenelone. You know what happened? My FSH went up to 22. My gyn was shocked. She couldn't comprehend how with giving me hormones, my FSH said I was in meno.

A few years ago, I went to another GYN who sent me to a reproductive endocrinologist fertility doc. He did an ultrasound of my ovary and said it was non functioning. But, why is it that I get my period. HE said I would go into meno in months That was two years ago. Still getting it. Still suffering.

I can tell you that I am sicker now than I have ever been and I wonder if meno will make it worse. I am not sure.

I used to have a wonderful sex drive...that vanished, too.

I am telling you, perimenopause made my CFS 70% worse. I used to work about 30 hours a week and travel. Those days are gone. I am here if you need to reach out to me.

You are not alone. TCM has helped to regulate my periods but does nothing for nightsweats or insomnia or pain. It can help, but only so much.

 

[LisaGoddard]

Thanks Lisa,

I appreciate the response, could you please tell me the HRT that you are using? Perhaps I can discuss the treatment with my doctor.

Hi Bertie7 and other sufferers, I'm on Evorel Sequi which is estradiol (plant based form of oestrogen) and northisterone (synthetic form of progesterone). I'm on patches rather than tablets because of a slighly increased risk of deep vein thrombosis. There are some good tablet forms of HRT, however, such as hormonin (plant based oestrogens) and utrogestan (natural form of progesterone). I avoided brands such as Premarin and Premique which use pregnant horses under inhumane conditions.

I gathered from internet searches that the sequential combination (where progesterone is just added for two out of every four weeks) is better for perimenopause than the continuous combination form (where you take both progesterone and oestrogen daily). The latter is often used in menopause.

Be aware of the increased risk of breast and uterine cancers with HRT. I had to weight this up against the benefits. In my case, I've decided that the improvement is worth the risk.

 

[TigerLilea]

@TigerLilea Did you notice if there was a fluctuation in your CFS symptoms with your cycle prior to menopause?

During the last two years of perimenopause I would get crashing fatigue about two or three days before my period, but I don't think that had anything to do with the CFS. My CFS symptoms didn't get really bad until I started having hot flashes five and a half months postmeno. Since then, even when I'm not going through hot flashes, my CFS is much worse than it has ever been in the past.

 

[WoolPippi]

My ME/CFS symptoms always followed a pattern of being dramatically worse 5-6 days before ovulation (in addition to getting worse with high emotional/physical stress).

This says "unopposed estrogens" to me.
As does the rest of your story. But then, I've suffered from this all my life and am very biased to seeing it everywhere

Having said that: I balance my estrogens now with a Progesterone supplement. And it works wonders for my CFS too.
This is logical since Cortisol is made out of Progesterone. Cortisol makes blood pressure, stomach acid and stress resilience. All the things that dwindle in CFS

My adrenals fizzed out at age 37, probably after having to produce most of the Progesterone all those years. I now supplement with Hydrocortisone and Progesterone. I can noticably take less HC when I take enough Prog.
Since supplementing Prog. (started at age 36) the madness, PMS, pain, sore breasts, baldness and hypothyroism have stopped. Perimenopause seems to have gone away again. I plan to slather it on when menopause hits.

I had a broad spectrum hormone analysis done (both blood and 24 urine) by dr. Thierry Hertoghe in Brussels. Results have to be interpreted coherently, not just by the reference values a lab gives. (Lab said: "prog levels are ok." Dr. said: "not for a woman on day 21 of her cycle, you are 600% defficient.)

Now I supplement with the exact molecule my body would have produced otherwise: Progesterone. Not progestins that are in regular contraceptives or HRT. I take a pill (100 mg, Utrogestan) and have a cream (NPC)
I believe all HRT should be the bio-identical form of human hormones. Not the patented, slightly different molecule.
With bio-identical hormones you have no risk of side effects such as trombose.

The cream works instantly. Just a tiny amount, less than toothpaste, on the inside of my wrist. Immeadately (sorry spelling) my whole body sighs of relief. This, to me, points to the neurotransmitter qualities that Progesterone has. It is much, much more than a female sex hormone.

I realize I present only one topic in what is likely to be a bouquet of hormones and causes but this is the only one I know a bit about. Best of health to you.

 

[persuasion]

I'm getting increasingly worried that I'm getting worse during peri-menopause but am holding out a hope that once it's over and menopause is finally here, I might start to improve a bit. This is what my gyn' says, but he knows nothing of ME.

Now I've just read a post by a woman saying she's got a lot worse in menopause and I'm even more worried.

I'm sure hormones are key for all women with ME. I was definitely a bit better when pregnant and had a catastrophic collapse (completely bedridden for a solid 3 years) after coming off Dianette (a contraceptive pill).

Can you tell me what your experience has been?

 

[persuasion]

I've just been taken to this page before seeing posts here. Worrying to read that others are worse after menopause has finally come, as I'd hoped that once the fluctuations of peri-menopause had calmed down, things would get better.

Can you tell me if any of you were severely affected pre-menopause, (ie housebound/bedridden)?

 

[Little Bluestem]

After menopause, I was better than I was during peri-menopause, but worse than I was before peri-menopause. I was, and am, not seriously affected.

 

[sueami]

Persuasion, worrying now about something that may or may not happen after menopause is borrowing trouble, and adding stress to a system that could better spend it's resources elsewhere. I'm perimeno right now as well. I can't see pursuing anectdotes about this as in any way helpful to our energy and mental state. It could go any way, but it's most likely to improve if we focus on what we can do in the here and now to rest and recover. Just my two cents' worth....

 

[Little Bluestem]

During perimenopause my low blood sugar became worse and I think my low blood volume did too. You might watch out for those things. If you stay on top of them, you will feel better.

 

[persuasion]

Persuasion, worrying now about something that may or may not happen after menopause is borrowing trouble, and adding stress to a system that could better spend it's resources elsewhere. I'm perimeno right now as well. I can't see pursuing anectdotes about this as in any way helpful to our energy and mental state. It could go any way, but it's most likely to improve if we focus on what we can do in the here and now to rest and recover. Just my two cents' worth....

Yes, you're probably right! We're going to find out in due course!

 

[xchocoholic]

Since my peri menopause included excessive bleeding I feel much better now that it's over. Before peri menopause my "normal" periods would always make me run down for about a week. Looking back I probably should've eaten more red meat and rested more during these.

I switched to a gf + diet during peri menopause so any other changes could be from that.

Tc .. x

 

[Aileen]

Please don't assume that things will get worse for you. In my case, I used to get terrible migraines either a day or 2 prior to or during my period. I have just been through peri-menopause and now am, I think, in menopause. The monthly hormonal headaches are gone.

I'm not sure what is happening temperature-wise. I did have some hot flashes for about 6 months. It was at the same time as a virus started reactivating though, so I'm not sure if it related to menopause or not.

Overall I really don't feel any different. Just that the typical menstrual symptoms are gone. Yay!! I'm not taking any hormones or other treatment directed at menopause.

I've been sick for over 25 years. Just because we are very ill does not mean that menopause will be a problem. It will vary just as it does in generally healthy women. Don't panic. My advice is to forget about it. If symptoms develop when it comes, you deal with that the same way you do any other health issue that arises. I'm not laying awake at night worrying about how I'll deal with a broken hip when I'm 80!