Strong Hormonal Pattern CFS + (auto)immune problems?

[OverTheHills]

Hi there

I'm kind of hoping that some of you medically/biologically aware people might have a hypothesis or two for me. Apologies if this is covered in another thread, I couldn't find it.

The Pattern: Every month, just before my period, my CFS symptoms suddenly improve drastically - I stop feeling physically fatigued, weak, foggy/mentally tired for about 1.5 days. Looking at the graphs this seems to coincide with the time when both female hormones are at their absolute minimum. I have other seasonal fluctuations as well so it took me a long time to spot this pattern. I've noticed some posts where people say their symptoms worsen after menopause, which is the opposite to me?

Relevant Medical History:
Some autoimmune stuff - fluctuating positive ANA results, confirmed endometriosis since teenage, Raynaud's.
Also severe Polymorphic Light Eruption, many allergies (nickel, lanolin,insect bites,moulds, pollens), and unexplained severe urticarias all long predating CFS.
Never had a particularly effective immune system (caught chicken pox and measles at the same time when young - then got chickenpox twice more) later on regular flu, severe colds. Breathlessness following on from viral infections (but its not asthma)
Never tolerated the pill. Made me feel tired!

My Questions:
Have I got some sort of autoimmune thing going on here, possibly to progesterone, or is it "just" ME.

I'm tempted to tackle a GP again about this but in the past trying to talk to GPs (how about trying a chemical menopause since I'm 49 anyway - get lost ) or Rheumatologists (its not Lupus or anything common and we don't believe in CFS so go away) is about as productive as talking to my cat. And less fun.

Anyone else have a pattern like this?

OTH

 

[flybro]

Hi there

I'm kind of hoping that some of you medically/biologically aware people might have a hypothesis or two for me. Apologies if this is covered in another thread, I couldn't find it.

The Pattern: Every month, just before my period, my CFS symptoms suddenly improve drastically - I stop feeling physically fatigued, weak, foggy/mentally tired for about 1.5 days. Looking at the graphs this seems to coincide with the time when both female hormones are at their absolute minimum. I have other seasonal fluctuations as well so it took me a long time to spot this pattern. I've noticed some posts where people say their symptoms worsen after menopause, which is the opposite to me?

Relevant Medical History:
Some autoimmune stuff - fluctuating positive ANA results, confirmed endometriosis since teenage, Raynaud's.
Also severe Polymorphic Light Eruption, many allergies (nickel,lanolin,insect bites,moulds, pollens), and unexplained severe urticarias all long predating CFS. (Similar here hives, never severe but worse after sun),
Never had a particularly effective immune system (caught chicken pox and measles at the same time when young - then got chickenpox twice more) later on regular flu, severe colds. Breathlessness following on from viral infections (but its not asthma) same here again, asthma puffas made it worse, prednisone helped much.
Never tolerated the pill. Made me feel tired! same again, tired and bad tempered, emotionally distraught, same with all hormone stuff, my daughters are the same as well.

My Questions:
Have I got some sort of autoimmune thing going on here, possibly to progesterone, or is it "just" ME.

I'm tempted to tackle a GP again about this but in the past trying to talk to GPs (how about trying a chemical menopause since I'm 49 anyway - get lost ) or Rheumatologists (its not Lupus or anything common and we don't believe in CFS so go away) is about as productive as talking to my cat. And less fun.

Anyone else have a pattern like this?

OTH

I was failure to thrive from 6weeks old, until about 5 or 6.

My brother who had asthma, and excema, I also think he had ADHD & was dyslexic, he also always had sniffles, he had ulcers on his back when he was little, had many infections in his teens. Convulsions when he was a baby.

Once past 5/6 I was pretty good, highly unusual for me to get anything, until I had red flu age 10/11 I think, mind gladular fever at about 10/11/12.

Kidney and urine infections in my teens, and a couple of odd collapsing/feinting type things.

I had hysterectomy @ 28.

My alleries were sudden onset about 5/6 years ago, which was not long after a tetanus jab.

My health has declined rapidly over the last 4/5 years.

 

[Athene]

Opposite effect

I get the exact opposite from you - drastic worsening of ME symptoms for about 5 days before my period. It improves pretty rapidly (in a day) once my period starts.
I also have high ANA titers.
I tend to get very high histamine and I know this interacts with estrogen, though I don't know the details. (Apart from the muiltiple allergies and urticaria you mentioned I get other histamine symptoms: Histamine causes headaches, sleep disturbance, gut problems inc. diarrhoea, the "tired but wired" feeling, low BP and tachycardia and many other CFS symptoms)
I also had no tolerance of the pill. Apart from feeling tired it made me basically go "psychotic". I've tried 3 types and they all did this. I turned into a nutter.
I don't know how any of this fits together but could it be useful to do a sticky poll to see how other women are affected before their period? Do you know how to set one up?

 

[OverTheHills]

A Poll: Good Idea

I don't know how any of this fits together but could it be useful to do a sticky poll to see how other women are affected before their period? Do you know how to set one up?

Hi Athene and Flybro , and thanks for taking time to fill me in on your experiences. I get the impression that my pattern of "remission" just before my period is rather atypical for CFS. Everything I have read indicates that your pattern Athene - worsening just before periods is the usual thing.

I think the idea of a poll is a good one but
you have NO IDEA how little ability I have with this sort of thing.

Comes from being middle aged with no kids (Twitter? Facebook? Why?).

I will just ask in an embarrassed whisper.... who should I ask to help me set it up??

OTH

 

[nina22]

Oh I just found the poll thingy accidentally! So you post a “new thread” (I found the new thread button under the hormones heading) and then there is a button to make a poll at the bottom of that page. Please do a poll I’d love to see that question answered! I have a PEM crash two days before my period every month like clockwork!

 

[Seadragon]

Hi there

I'm kind of hoping that some of you medically/biologically aware people might have a hypothesis or two for me. Apologies if this is covered in another thread, I couldn't find it.

The Pattern: Every month, just before my period, my CFS symptoms suddenly improve drastically - I stop feeling physically fatigued, weak, foggy/mentally tired for about 1.5 days. Looking at the graphs this seems to coincide with the time when both female hormones are at their absolute minimum. I have other seasonal fluctuations as well so it took me a long time to spot this pattern. I've noticed some posts where people say their symptoms worsen after menopause, which is the opposite to me?

Relevant Medical History:
Some autoimmune stuff - fluctuating positive ANA results, confirmed endometriosis since teenage, Raynaud's.
Also severe Polymorphic Light Eruption, many allergies (nickel, lanolin,insect bites,moulds, pollens), and unexplained severe urticarias all long predating CFS.
Never had a particularly effective immune system (caught chicken pox and measles at the same time when young - then got chickenpox twice more) later on regular flu, severe colds. Breathlessness following on from viral infections (but its not asthma)
Never tolerated the pill. Made me feel tired!

My Questions:
Have I got some sort of autoimmune thing going on here, possibly to progesterone, or is it "just" ME.

I'm tempted to tackle a GP again about this but in the past trying to talk to GPs (how about trying a chemical menopause since I'm 49 anyway - get lost ) or Rheumatologists (its not Lupus or anything common and we don't believe in CFS so go away) is about as productive as talking to my cat. And less fun.

Anyone else have a pattern like this

OTH

Exactly the same as you both with the drastic improvement for 1-2 days per month just before and sometimes first day of period onset.

I also have weak positive ANA and high positive Rheumatoid Factor (but no Arthritis), also weak positive AntiSmooth muscle antibodies and intermittent high positive ESR in the past.

Also like Athene, I can't tolerate any form of the Pill or even very low dose HRT and really badly struggling during perimenopause now as a result, both with increased ME symptoms and inflammatory type pain/stiffness and also emotional lability and mood swings etc. Hoping menopause gives some much needed relief from this rollercoaster.

Have not had any solutions from doctors (they have tried to help to be fair to them) because I don't have any obvious autoimmune disease (was thoroughly investigated by a good rheumatologist several years ago) and I can't tolerate hormone treatments.

Interesting thread and relieved to know I am not the only one!

 

[xebex]

I have a similar pattern, but can’t quite figure out if I’m at my best just before the hormones drop or when they are at their highest. One theory I have is that I am homozygous for COMT gene met/met which means I struggle to break down catechols estrogen and dopamine plus raising estrogen also helps raise dopamine so in that week before my period my dopamine rises making me feel better but it either rises too high causing me to push too far or simply causes a crash in itself.

 

[Seadragon]

@xebex Yes, it would be good if there were reliable tests that could determine exactly which hormones are doing what when we are feeling better.

 

[nina22]

@xebex Yes, it would be good if there were reliable tests that could determine exactly which hormones are doing what when we are feeling better.

Yeah that would tell us so much if we could see it in real time!