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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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PMS and CFS

Messages
6
I feel like my CFS is very much related to my cycle or blurs in with PMS and I find it very confusing! I would like to know whether that is the case for all women or whether this is only true for some people. I often can't really say whether I have a relapse as it might also be PMS. Would be great to open a broader discussion on this with all females here that experience this or thought about it.

eg: the pill: I have experienced severe tiredness in PMS time during the pill and I have also experienced severe tiredness for weaks whenever I went off and then again onto the pill and wondered whether this was true for any other CFS people here - as supposedly this is not a side effect of the pill (I took one of the minipills, AIDA) - I am now off the pill since 2 years and very happy and will not interfere with my body with any hormones again!

how do your PMS/CFS interfere and how do you know what is what or how do they interrelate?
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I'm menopausal now but came down with CFS when I was 36. My tiredness was always worse for several days leading up to my period. I spent more time in bed because of it. I knew I had to plan ahead for those days and not plan any activities such as doctor visits at that time. I seem to recall other females with CFS in a support group having the same problem with worsening CFS right before their periods.

I don't have any experience taking the pill while I had CFS, so I don't have any feedback for you there.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
I haven't noticed any change in ME symptoms associated with my menstrual cycle.

It's an interesting question. I'll try to track things and see.
 

PDXhausted

Senior Member
Messages
258
Location
NW US
Yes, mine is highly associated with both the pill and my cycles, as well as endometriosis.

I'm too severe to type out details but wanted to chime in. Can search through my older posts for more info.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
@Ellea I found the monthly hormonal cycle quite powerful in triggering ME relapses. ME is very sensitive to change in many ways. I'm 51 now and I think I am nearly through the menopause. I don't get the horrible headache/nausea a week before and sometimes after a period that I used to get when I was having periods. I not only had headache, my whole body would become weaker, my legs felt weaker.

I think there were a few odd months where it wasn't as bad and I stayed a bit stronger through it but mostly I deteriorated. I guess it also depends on how much one overdid it as well leading up to a period, possibly.
I am so glad to be off that monthly rollercoaster - one less ME relapse trigger.
 
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Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
My pain gets substantially worse when I've got my period, especially my legs and hips.
 

Snookum96

Senior Member
Messages
290
Location
Ontario, Canada
Everything is worst before my period, or at least when I should have. I switched to a UTI because I was bleeding pretty much constantly on the pill.

Leg, hip and bum cheek (I don't know how else to say that) is much worst. I'm usually bedridden around that time, feel like I have the flu.
 

Michelle

Decennial ME/CFS patient
Messages
172
Location
Portland, OR
Flu-like symptoms, insomnia, GI issues and wide-spread burning pain generally get substantially worse the week before my period -- in addition to the usual cramping. I started taking Red Raspberry leaf every day four months ago for cramping as recommended on several endometriosis sites (along with Red Raspberry leaf tea during the week leading up to my period), which has helped a great deal. But -- go figure -- it also seems to help with the widespread burning pain and even a little bit with flu-like symptoms. I've only got four months worth of data, so that may not be enough to say definitely that it's helpful. And of course, your mileage may vary. Prior to that, I've taken Red Raspberry leaf in capsule form for several years at the first onset of cramping and found that did relieve cramping if taken immediately upon onset of cramping. If I waited several hours or until the cramping got worse, it was less effective.