Menstruation and worsening MS symptoms
Many women with multiple sclerosis notice worsening symptoms when they start menstruating. Why does this occur? And what can be done about it?
It seems as if my menstrual cycle causes pseudo-flares almost every month. I increasingly experience dizziness, lightheadedness, extreme fatigue, painful cramps, and increased visual sensitivity. What can I do about it?
Prof G’s opinion
In premenopausal women, after ovulation, the body temperature rises by approximately 0.4℃ (range = 0.3 to 0.6℃), which in some women is enough to cause temperature-dependent conduction block (Uhtoff’s phenomenon). The rise in body temperature causes old symptoms to reoccur and, in extreme cases, can be incapacitating. I call this catamenial temperature-related fatigue or catamenial Uhthoff's phenomenon. Catamenial symptoms often respond to non-steroidal anti-inflammatories, which is probably why aspirin has been shown to improve MS-related fatigue.
Another factor is that menstruation itself is proinflammatory and increases inflammatory mediators in the blood. This explains why many women experience symptoms during menstruation similar to those you experience with an infection. PwMS are more sensitive to this phenomenon, which is called sickness behaviour, which explains why menstruation, independent of temperature changes, may be associated with worsening symptoms.
Finally, during menstruation, oestrogen and progesterone levels fall and flat-line, which triggers menstruation. The endometrium is a hormone-dependent tissue and removing hormone stimulation results in it involuting and sloughing. The drop in oestrogen levels affects the endometrium and other hormone-sensitive organs, including the brain. The latter can result in a low mood, even depression, bad moods, anger, resentment, aggression, reclusiveness, fatigue, low energy levels and insomnia. From a biological perspective, this part of the menstrual cycle is like a mini-menopause, with many symptoms similar to what perimenopausal and menopausal women experience.
Please see my MS-Selfie Newsletter “Is it MS or is it the menopause?” (16-Aug-2021) for more information on menopause and MS.
About this patient above, there are several things she can do. She can use antipyretics in the second half of her menstrual cycle to see if that helps. Over-the-counter ibuprofen, aspirin or paracetamol are an excellent place to start as a form of self-management. If these don’t work, I would suggest she sees her family doctor to ask for a longer-acting non-steroidal anti-inflammatory medication, i.e. naproxen.
If this patient's worsening symptoms persist, she may want to suppress menstruation. The best way to do this is by using the progestogen-releasing intrauterine contraceptive device or Mirena coil. This inhibits the development of the endometrium, and most women with a Mirena coil stop having periods. The level of systemic progestogen may be too low to inhibit ovulation, so women with the Mirena coil may still experience the effects of cyclic oestrogen production with the negative symptoms associated with low oestrogen levels at the end of the cycle.
If this patient opts for a trial of the Mirena coil to suppress menstruation and continues to experience cyclic fluctuations in her symptoms, she could explore a continuous combined hormone (oestrogen and progesterone) oral contraceptive pill. I would not recommend the progesterone-only pill, or depo-provera (intramuscular progesterone), as this not only suppresses ovulation but suppresses oestrogen levels that may contribute to her negative symptoms.
Another option this patient could try is cooling strategies despite a relatively poor evidence base (please see Heat - what to do? (18-07-2022)). Many pwMS report that cooling improves their fatigue and intermittent symptoms.
For women reading this Newsletter, I would be interested to hear whether or not you are temperature sensitive and have catamenial Uhthoff's phenomenon and how you manage your symptoms. It would also be instructive to others to tell us about your experiences with using antipyretics and whether or not the Mirena coil or continuous OCP has made any difference to your menstruation-induced MS symptoms.
Finally, I urge you to read the following MS-Selfie Newsletters, which are related to this topic:
Do you suffer from cog-fog, fatigue or sickness behaviour? (19-10-2021)
Case study: Copaxone, menstruation and the menopause (06-04-2022)
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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Sorry to laugh at this… I said the same was occurring 30 years ago to my primary care provider… she told me it wasn’t possible. I knew every month my face went numb, and trigeminal neuralgia occurred, as a prelude to my menstrual cycle. I was also told there was no pain in MS. Also told…. My spinal cord lesions were artifact. Just wow!!
My symptoms were always significantly worse the week before my period. I would be so weak and walk so stiffly people would ask if I had a bad back. Then as soon as my period started I would noticeably ease up. I went on the oestrogen/progesterone pill and this disappeared and in fact within a month I was able to walk more easily in general. I then had five years relapse free and my walking was so much easier that people I hardly knew (like the cleaner at work) would comment that my MS must be much better. I even managed to walk 1k which I hadn't done for years! Sadly at 48 I started having relapses again (could this be menopause?). Sadly HRT hasn't had the same effect.