SFN exacerbated during menstrual cycle

Posted by robyn @boltz7555, Jun 26, 2022

Hello. Does anyone with SFN, autonomic dysfunction and/or POTS experience “flares” that coincide with your menstrual cycle? It doesn’t happen every cycle but many times I experience flare with widespread pain, headaches, tachycardia and fatigue at the start of my menstrual cycle (about the first 24-48 hours). It can be quite debilitating at times. While I have “off cycle” flares as well, my menstrual cycle is the only trigger I’ve truly been able to identify. For reference, I am 44 years old and possibly peri menopausal (was told so about 5 years ago but still have a period every month). My SFN is idiopathic.

Is this menstrual trigger actually a thing? I was told years ago, before SFN diagnosis, that I have menstrual disorder and possibly endometriosis but was never treated for it. Now I wonder if it’s just part of SFN and autonomic dysfunction. Any suggestions for heading it off at the pass or for easing symptoms? I currently take Amitriptyline and have failed many other treatments/medications. They either haven’t helped or the side effects are more harm than the medication is good. I’ve tried cymbalta, lyrica, oxcarbazepine, botox for headaches, rizatriptan, propranolol….all the OTC remedies, including IBU, acetaminophen, CBD/THC.

Thanks for listening and for any insight. Wishing you well.

Robyn

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John, Volunteer Mentor | @johnbishop | Jun 26, 2022

Hi Robyn @boltz7555, I'm not a doctor but unfortunately I think it may be a real thing for some women. Hoping other women with small fiber neuropathy can share their experience with you. While we wait to hear from other members, here are a few references I found.

"Can menstrual cycle affect nerves?
New findings suggest not only that PMS is tied to decreased nerve activity each month, but also that those with extreme symptoms may have a permanently depressed nervous system. For some women premenstrual syndrome (PMS) is a minor monthly annoyance, but for others, more severe symptoms seriously disrupt their lives." --- Bad PMS May Mean A Depressed Nervous System - ScienceDaily: https://www.sciencedaily.com/releases/2007/12/071219202940.htm

Menstrual cycle-related exacerbation of disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3107848/

robyn | @boltz7555 | Jun 26, 2022

In reply to @johnbishop "Hi Robyn @boltz7555, I'm not a doctor but unfortunately I think it may be a real..." + (show)

@johnbishop Hi John, thank you for the reply and resources. You’re always so helpful and supportive! I appreciate you.

John, Volunteer Mentor | @johnbishop | Jun 26, 2022

In reply to @boltz7555 "@johnbishop Hi John, thank you for the reply and resources. You’re always so helpful and supportive!..." + (show)

Thanks for the kind words Robyn! We are all in this life together 🙃. I can't tell you how many times I've been helped by other members on Connect which is why I love to give back when I can. I really hope another member has some tips or suggestions that might help.

Rachel, Volunteer Mentor | @rwinney | Jun 27, 2022

Hi Robyn, it's not in your head. My menstal cycle brings me an increase in symptoms every month too. It's a natural uptick in chronic neurological "stuff" and it's a bummer. I would however rule out possible endometriosis if that was a past concern.

I used to focus on my monthly cycle and dread the increase of flares, but then realized I was wasting my energy and making symptoms worse by stressing. I decided to shift focus and work on coping strategies during that time in order to respond better. I know what's coming, how am I going to emotionally and behaviorally deal with it? We may not always be able to control our pain but we CAN control our response to it.

I've been where you are with all those meds and you yourself have answered your own question...they aren't working and/or create more symptoms from side effects. It's a freaking merry go round and makes me sad to read for you.

Have you given thought to coping strategies? How might you work towards helping yourself handle the increased symptoms?

robyn | @boltz7555 | Jun 28, 2022

@rwinney Hi Rachel -
Thank you for the response! You always give me motivation to think differently and power through. I don’t like being “leveled” and it used to upset me if I didn’t have a productive day. I still struggle with it but I just take it as it comes, turn it into a movie marathon day and tell myself I’m allowed to have a break! 😏 I agree with the meds, they don’t work and I’m done trying to find the magic pill.
Thanks again! 🤗
Robyn

Rachel, Volunteer Mentor | @rwinney | Jun 28, 2022

@boltz7555 It's not easy and yes, you most certainly are allowed a break on difficult days. It's called giving yourself grace. Not everyone comes by it naturally. I for one did not. If it makes you feel any better, I was the queen of overachieving and perfectionism. Bad, bad concoction. When my body slammed on the breaks, I was forced to comes to terms with a re-birth. I call it a re-birth because that's what I feel Mayo PRC did for me. They literally taught me survival skills which meant I had to look in the mirror and hold myself accountable to change. It doesn't happen overnight, but if you set one goal and work on that goal, you'll feel a sense of pride and accomplishment.

A movie marathon?! Yes!! You are worthy of a movie marathon on a difficult day, knowing that the next day you'll try again. Remind yourself that you've survived 100% of your past difficult days.