Increased CFS symptoms and hormones ...

[xchocoholic]

Hi All,

I was hoping we could put our heads together here. Women who are post menopausal may be more aware of how hormones affect them than those who are still experiencing a monthly cycle. But, maybe not ...

I wrote this on Rich's thread about pregnancy and CFS symptoms but honestly if I hadn't experienced this myself I'd never have looked at that thread. I'm 54 and post menopausal.

Does anyone have any more info on how, why or which hormones affect our CFS symptoms ?

And should women consider stopping their periods somehow so that their bodies can recover from CFS ? This would certainly eliminate the problem we have with blood loss each month.

I'm not up on what options are available nowdays. I was on BC pills for most of my life. (I wonder if this made my CFS worse or caused me to get CFS ? )

FWIW. I used to throw up continually the first day of my cycle when I was a teenager. My whole cycle was hard on me though with excessive bleeding, cramping and pains. Anyone else ? Is this a sign that CFS will follow ?

Here's my post from Rich's thread ...

"Originally Posted by richvank

That's what I suggest goes on. I don't doubt that the increase in blood volume during pregnancy also helps. And not having to break down and get rid of estrogen every month would also be a big help, because, as I suggested in a 2007 IACFS poster paper, I think this is what causes CFS to be more prevalent in women than in men. Those who inherit certain polymorphisms experience redox cycling when their bodies are disposing of estrogen, and this biases them toward oxidative stress and glutathione depletion, which I've suggested is what leads to the onset of CFS in people who are genetically predisposed."


Hi Rich,

Can you tell me what this quote means in layman's terms ? Do you know what we can do if our bodies are having trouble breaking down estrogen ? Or how we can be tested for this ? I'll have to google "redox cycling" ...

I'm not sure if this will help you or not but I'm experiencing a return of some of my "CFS" symptoms due to ovulation this month. Most women experience an increase in allergies, abdominal symptoms, etc when menstruating but I'm not sure if it's all related to ovulation or what part of the cycle or which hormones. Do you know ?

It's probably been 6 months since I ovulated and over a year since I've had a period. I wasn't sure what this was the last time I did this but now I know for sure. All the signs are there ... lol ...

I'm post menopausal so this is something I can look at without being confused by the normal stress, loss of blood, etc. that having regular menses cause. And since I have my candida, vulvodynia, UTIs, allergies, sleep disturbances and food intolerances under control most of the time I can tell what's up now.

By a return of my "CFS" symptoms, I mean that my allergies, esp my chemical sensitivities are back. I'm super sensitive to laundry soaps, newspaper, etc. My nose is running quite a bit and I'm sneezing about 20 times a day.

If I still had an obvious candida problem and vulvodynia I can assure you that these would be worse now too. TMI ...

My digestion has slowed and I have to be careful what I eat right now.

I had one day of cloudy urine and took AZO just to be sure I wasn't getting a UTI. I figured out awhile back that I was getting UTIs regularly and taking AZO and staying on a low oxalate diet is keeping that under control. This could've just been something I ate too and unrelated to ovulation. I haven't had any other UTI symptoms with this just some pain in the lower region around my bladder and uterus.

My sleep is being interrupted by this too. I was wide awake for 5 hours in the middle of the night and had to increase my 5HTP to 200 mg in order to sleep. And I need 100 mg of theanine for my myoclonus now too. At least this is working though ...

And I'm more tired / weak than I was despite keeping the same regime.

I'm not sure where my glutathione levels are now but when they were tested in 2008, they were good and my diet is still healthy. I did however show a decrease in the ability to detox via Spectracell testing. Vitamin E was the only recomendation ... FWIW. I'm craving raw aspargus which has glutathione ... lol ... oh and my chocolate cravings were horrible last week and totally gone now. At $4 a bar, I'm glad that's over ... ; )

I was going to wait until I understood all this better before posting this here but realistically, it would take me too long to learn all of this ... HTH ... Marcia

PS. I experienced massive blood loss when peri menopausal and can tell you that the feeling of weakness I got from that had nothing to do with the symptoms I get from gluten or other food intolerances, or constant UTIs, or vulvodynia or candida, etc etc ... Those were seperate conditions ... So, IMHO, low blood volume has little to do with my CFS. I tested positive for iron anemia, used a cast iron pan for several months and then retested fine ...

BTW, I can't remember the name of the test they ran at the ER that showed that my blood volume had dropped significantly in a couple of days but wouldn't that work for us too ...

Thanks .... Marcia

 

[leaves]

Hmmm im end twenties and i havent menstruated in 7 years or so, very low estrogen, prolactin etc. still cfs im sorry tosay...

 

[xchocoholic]

Hmmm im end twenties and i havent menstruated in 7 years or so, very low estrogen, prolactin etc. still cfs im sorry tosay...

Interesting ... I still have CFS (OI, PEM and fatigue) too but my symptoms have lessened in the last year since stopping menstruation (is this the correct term for the bleeding part ? ). I was chalking up all my improvements to dietary changes but obviously hormones are playing a role here. Because I've only ovulated 3 times in the last year or so, I didn't make the connection.

Do you know why you haven't menstruated in 7 years ? I'm assuming it's from the low estrogen but are you ovulating ? This alone is causing my symptoms to return. My doctor told me when I saw her for this on Thursday that she didn't think I would have a period because my estrogen is too low so my uterine lining wouldn't be thick.

I'll have to look at my labs to see if my prolactin was checked.

I'm not up on all the female hormones so I'll have to do some homework here ... thanks ... Marcia

 

[MEKoan]

I experienced a remission to 85% of normal (with crashes) following a hysterectomy/oophorectomy at 33. Since the hysterectomy was for severe endometriosis of the bowel which, along with PMS, became symptomatic suddenly coincidental with the initial triggering flu-like illness, I was not given replacement estrogen for more than 6 months following surgery and experienced a surgical menopause.

When I was prescribed HRT, I took it but always felt that it did not agree with me and put that down to the fact is was made from pregnant horse urine. As an ethical vegetarian, that did not sit well with me but other options were not available at that time. I was less than compliant and sometimes wondered if estrogen made me worse. However, it seemed silly to think that HRT would bring on things like sore throat, swollen glands, fatigue, bladder infections, cognitive issues... when some of these issues like bladder infections and cognitive issues are more often connected with the absence of estrogen at menopause. However, we know now that it very probably did make me worse. Plant based estrogens were slightly better but I took a very small dose. I stopped them when I could not longer afford them.

I developed osteoporosis and fractured my pelvis in a fall when I was not yet 40 so I did attempt to be compliant with the estrogen for my bones. I also took a bone building drug for a time.

So, for what it's worth, and I don't advise this as a treatment, the removal of my ovaries coincided with an improvement in my health.

 

[alice1]

I'm post menopausal as well and felt much better after I stopped bleeding.
When I did get my period I would have one decent week.Two weeks of pms and then one week to get over the blood loss.That was 13 years ago.
Dr Klimas did say my testosterone was good which seemed to please her.

 

[xchocoholic]

I experienced a remission to 85% of normal (with crashes) following a hysterectomy/oophorectomy at 33. Since the hysterectomy was for severe endometriosis of the bowel which, along with PMS, became symptomatic suddenly coincidental with the initial triggering flu-like illness, I was not given replacement estrogen for more than 6 months following surgery and experienced a surgical menopause.

When I was prescribed HRT, I took it but always felt that it did not agree with me and put that down to the fact is was made from pregnant horse urine. As an ethical vegetarian, that did not sit well with me but other options were not available at that time. I was less than compliant and sometimes wondered if estrogen made me worse. However, it seemed silly to think that HRT would bring on things like sore throat, swollen glands, fatigue, bladder infections, cognitive issues... when some of these issues like bladder infections and cognitive issues are more often connected with the absence of estrogen at menopause. However, we know now that it very probably did make me worse. Plant based estrogens were slightly better but I took a very small dose. I stopped them when I could not longer afford them.

I developed osteoporosis and fractured my pelvis in a fall when I was not yet 40 so I did attempt to be compliant with the estrogen for my bones. I also took a bone building drug for a time.

So, for what it's worth, and I don't advise this as a treatment, the removal of my ovaries coincided with an improvement in my health.

Hi Koan,

Sorry to hear about your hysterectomy but on the upside, it sounds like it may have helped ... I'm leaning towards thinking that it's the ovaries causing the problem but I don't know enough yet. My ovaries are the only part doing their thing at this point. Actually it appears that it's my right ovary only at this point ...

My integrative doc gave me a script for Estrace when I saw her but I haven't had time to look into it yet. I'm a little concerned now that it's going to make my CFS symptoms (MCS, allergies, digestive issues, etc ) worse.

Both my integrative doc and my GYN told me that my candida, vulvodynia and bladder issues might improve if I used estrogen vaginally. The idea is to heal the area without taking it orally. I didn't realize that these were common problems for menopausal women. I thought it was just me ...

I see that you no longer take a bone building drug. Good for you ... Did you see the latest on Fosamax and bone breakages ? I can get you the link if you need it ... I sent the link to my sister who is on Boniva ...

thanks .... Marcia

 

[xchocoholic]

I'm post menopausal as well and felt much better after I stopped bleeding.
When I did get my period I would have one decent week.Two weeks of pms and then one week to get over the blood loss.That was 13 years ago.
Dr Klimas did say my testosterone was good which seemed to please her.

Geesh this sounds like me too. I'm glad you're feeling better now. Congrats on the testosterone level. My doc said mine was good too. It's 39 on a range of 20 - 76. My progesterone is .5 and less than .7 is post menopausal.

FWIW. I'm post menopausal and still ovulating !! I was shocked to hear this ... I've done this 3 times now about 6 months apart but I didn't figure this out until now because I felt like crap and had candida and vulvodynia all the time. GEESH ...

Funny story ... I didn't realize what a grouch I was until this happened and all of the sudden I don't feel so cynical ... lol ...

thanks ... Marcia

 

[MEKoan]

Estrace was the place based estrogen I took and, while it did not trigger the same reaction that horse pee did, I can't say what, if any, effect it had on symptoms as I was pretty symptomatic all the time whether I took it or not and I was not very compliant as it was not covered on my drug plan so I could not always afford it. It never occurred to me, pre XMRV, to really examine HRT and symptoms, unfortunately.

No, I didn't see anything about Fosamax and bone breakage! I don't know why I stopped, actually. Carelessness, I think.

Thanks for the heads-up, I will Google!

Good luck to you - it's all so bloody complicated, isn't it!
Koan

ETA Looked it up: Yikes!

 

[gracenote]

My symptoms got worse with peri-menopause and continued downhill when menopause came ten years ago.

My testosterone tests low.

 

[kerrilyn]

Hi Marcia,
My hormones have been a problem for me since my periods started (age 11). I've been estrogen dominant (high estrogen/low progesterone) with horrible periods. BCP caused serious emotional side-effects so I had to stop taking them in my 20's. I've heard some people have bad effects from progesterone, but I've done better (gyn wise) with supplementing with bio-identical prog cream. I haven't seen a change in my CFS type symptoms since the cream, not that I've attributed to it anyway. Everybody's hormones can be messed up in a slightly different way I think.

Couple things may interest you regarding hormones. The liver is involved with hormones, hormones are processed through the liver, so another reason to support the liver. Pregnancy greatly increases progesterone, it increases with ovulation too. Sounds like progesterone changes affected you. I've been reading about adrenal function lately, just took a saliva cortisol test yesterday. Some of the issues you mention like disrupted sleep, sugar cravings, allergies, chemical sensitivity, OI (to name a few) are all linked to low cortisol. Something else to look into maybe.

 

[xchocoholic]

Estrace was the place based estrogen I took and, while it did not trigger the same reaction that horse pee did, I can't say what, if any, effect it had on symptoms as I was pretty symptomatic all the time whether I took it or not and I was not very compliant as it was not covered on my drug plan so I could not always afford it. It never occurred to me, pre XMRV, to really examine HRT and symptoms, unfortunately.

No, I didn't see anything about Fosamax and bone breakage! I don't know why I stopped, actually. Carelessness, I think.

Thanks for the heads-up, I will Google!

Good luck to you - it's all so bloody complicated, isn't it!
Koan

ETA Looked it up: Yikes!

Hi again,

It sure is complicated ... and I was ready to take a break on learning anything new. lol ...

I'll try the Estrace when this is completely over and let you know if it helps or makes things worse ... I'm hoping to go back to not having MCS, etc. once this is over. Hmm, without having menstruation, I'm not sure how I'll know when it's over. Hopefully, this will let me know if this is an estrogen reaction or some other hormone or chemical.

I was thinking .. Do you have OI or PEM ? Or what are your CFS symptoms ? Maybe we can shorten the list of symptoms associated with CFS if we know which ones are associated with hormones ... did that make sense ? For example, I still have OI, PEM and fatigue even when I don't have MCS, digestive issues, etc from hormonal issues ...

thanks ... Marcia

 

[xchocoholic]

My symptoms got worse with peri-menopause and continued downhill when menopause came ten years ago.

My testosterone tests low.

I'm sorry to hear this Gracenote. So far is seems that those of us who improved with loss of menstruation have high testosterone levels ... I'm afraid I don't know enough to know why though. Hopefully someone else will come along and know if there is a connection or not ... tc ... Marcia

 

[kerrilyn]

My testosterone levels were low too. I supplemented with testosterone cream (along with the progesterone cream) because testosterone helps with stamina and muscle strength (which I have none). The cream at a higher dose did nothing except make me irritable and grow some hair in places I didn't want. Within a few months I went from being really low to being twice the normal level, so I've stopped using it. From what I've read on the forum, I'm not the only one who experienced no positive affects from supplementing with testosterone.

 

[MEKoan]

Hi again,

My symptoms are pretty classic. Began with totally flattening mono-like illness, kept the red sore throat and swollen glands whenever fatigued - which was mostly - for a couple of decades but those two symptoms have lessoned though not gone away.

PEM remains bad. I have myalgia which waxes and wanes. I do have OI, thermostatic instability, cognitive problems, pounding heart with exertion, and other stuff.

I used to have IBS but don't now and I don't know why -- could be I am accidentally eliminating a food that was a problem for me but I have no idea what it is as I eat whatever I can afford.

I also have some neurological issues: fasiculations, foot drop, twitching, numbness and tingling (or tumbling and ningus), neurogenic bladder, abnormal reflexes in knees - too brisk, and in the foot that drops - often absent, and intermittent issues with gait, posture ... there's more

I don't have MCS at all. I have always had many allergies and asthma.

I forget what else

One can only laugh, really, can't one.
:tear:

 

[xchocoholic]

Hi Marcia,
My hormones have been a problem for me since my periods started (age 11). I've been estrogen dominant (high estrogen/low progesterone) with horrible periods. BCP caused serious emotional side-effects so I had to stop taking them in my 20's. I've heard some people have bad effects from progesterone, but I've done better (gyn wise) with supplementing with bio-identical prog cream. I haven't seen a change in my CFS type symptoms since the cream, not that I've attributed to it anyway. Everybody's hormones can be messed up in a slightly different way I think.

Couple things may interest you regarding hormones. The liver is involved with hormones, hormones are processed through the liver, so another reason to support the liver. Pregnancy greatly increases progesterone, it increases with ovulation too. Sounds like progesterone changes affected you. I've been reading about adrenal function lately, just took a saliva cortisol test yesterday. Some of the issues you mention like disrupted sleep, sugar cravings, allergies, chemical sensitivity, OI (to name a few) are all linked to low cortisol. Something else to look into maybe.

Hi Kerrilyn,

My sister's name is Carolyn. lol ... I'm brain dead and in need of a shower at this point but wanted to reply quickly. That's interesting that you're doing better with progesterone. I haven't looked at this one yet. More homework ...

I'll have to look at low cortisol too. Actually, most of the symptoms (MCS, chocolate cravings only not sugar, insomnia, etc) that I had when ovulating aren't a problem normally so maybe my adrenals are ok now ... My chocolate cravings were so out of control that I should've had some idea that I was getting ready to ovulate ... duh ...

Thanks .. Marcia

 

[kerrilyn]

The progesterone has helped with pelvic pain but unfortunately not helped with the bleeding.

Dr. Oz had something on today about chocolate and caffeine, that it can stimulate estrogen. I only remember that because I thought - no, I love chocolate - but I don't want more estrogen. Isn't chocolate a stimulant also?

I crave anything with sugar in it, and if I give in, it makes my pain increase a lot.

 

[leaves]

No, the indirect cause of the amenorrhea is a mystery, the direct cause is hypogonadism. I think I am ovulating yes, not sure ... sorry this is all I know

 

[Sasha]

I've had heavier and heavier bleeding during menstruation for the last few years as I doubtless head menopause-wards. Having got up to losing about a third of a litre of blood per period, I was finally been prescribed tranexamic acid (scroll down a bit if you follow the link) to reduce the bleeding. It's amazing! I'd say my blood loss is down by about two-thirds or more. If I'd known tranexamic acid existed I'd have been begging for it years ago.

I have orthostatic intolerance and wonder how much this has been contributing to possibly reducing my total blood volume. I've taken it for the last two periods and didn't take the usual dive in energy. Fingers crossed these effects continue. I recommend trying it if you share this problem.

This isn't about hormones per se but if you can get heavy bleeding under control, you can see more clearly what's left to deal with.

 

[Catseye]

periods and CFS

I, too, took BC pills for years when I was younger. Very stupid, but oh well. I always had bad periods, this should have been a clue that my hormones were off but I was in the dark about everything. So with CFS, periods became worse and more frequent. I got down to a 24 day cycle with cramps so fierce I had to give myself injections of anti inflammatory drugs for 2-3 days every month. Dr. Farr put me on progesterone pills and now the periods are back to 28 days and with hardly any cramps. He also said that when the liver is overworked, like it is in most of us, then it can't break down estrogen properly. I would pay close attention to diet and liver. Liver cleanse pills can be very useful. They make your liver go ahhhh!

 

[xchocoholic]

Hi there,

Thanks for all the replies. I didn't forget about this I just got busy cleaning (from the B12 I took) and now I am too brain dead to comprehend this ... I'll be back.

BTW. I've had the exact same lower back pain in the exact same place I used to get it when I was having a period (down low and on one either side of my tail bone) and I didn't have a period. And all this time I thought it was from the cramping and bleeding ... what a hoot !!

I wonder if there have been any CFS studies or any physical symptom studies on post menopausal women or those who no longer ovulate or have periods regularly ...

time to lay down ... tc ... Marcia