Menopause and Multiple Sclerosis (MS) a Raging Battle
“I can make you believe there's nothing wrong with me by the way I look and act, but in reality, there's a raging battle inside my body that I'm constantly fighting.”
Menopause can be challenging all by itself. Pair it with a chronic condition like multiple sclerosis (MS), and the challenges can seem overwhelming.
Part of the problem is that so few studies have been done on how menopause affects women with MS, so women don’t know what to expect. And because many of the symptoms of menopause are so similar to those of MS, it can be difficult to know exactly what’s happening.
Women like Richelle already deal with so much uncertainty about their bodies. We want to help women with MS be better prepared to understand and manage their menopause.
Richelle’s story of MS and menopause
Diagnosed with MS in 2009, Richelle believes she’s now in perimenopause, but like many women, she’s finding it hard to identify where she is in the journey.
“I believe I'm in perimenopause. I don't know for sure,” Richelle says. “I have night sweats, hot flashes, and cramps occasionally but I have a Mirena IUD, so it's hard to know. I have had sporadic spotting while using Mirena but no real periods.”
MS only complicates and adds to the confusion so many women feel as they enter perimenopause—earlier than they thought, and with symptoms they didn’t know to expect.
“I had never been someone who sweats very much so suddenly having night sweats was strange to me. I've mentioned to my doctors that I believe I am entering menopause. I asked if they could test my hormone levels but the VA doesn't provide hormone tests,” she says. But she has noticed an intensifying of the brain fog and fatigue that MS already causes.
Like most of us, she finally self-diagnosed perimenopause, based on what information she could gather. “I just realized how hot I would get but still believed it was too early for menopause.”
At the moment, Richelle hasn’t made lifestyle changes or added prescriptions to help combat menopause symptoms. But her MS does make perimenopause physically harder on her. Her advice to other women in the same situation?
“Rest when your body tells you to. If you need to lay down in the middle of the day, give yourself permission; you're not lazy. Buy a fan...or five.”
The more information we can provide women — all women — the better we’ll be able to make the choices that impact our health and quality of life. So, what do we know? Unsurprisingly, the answer is: not enough.
Does menopause worsen MS symptoms?
So little research has been done that this is a difficult question to answer. However, MS is more common in women and MS symptoms tend to first appear in the mid-reproductive years. And because both the first period and postpartum period can trigger relapses, it seems likely there’s a connection between women’s reproductive hormones and MS.
One small study seemed to indicate some reduction in relapse rate but that disability progression didn’t change after menopause.
A small study on MS and menopause from 1992 showed slightly more than half the subjects reported a worsening of MS symptoms, about a third noticed no change, and a small percentage reported an improvement. Of those who noticed improvement, three-quarters had received HRT.
While this may show some promise for HRT in women with MS, the study of 30 women is too small to draw conclusions. Sadly, the alarms raised by the largely erroneous WHI study of HRT means even fewer women have been placed on HRT, and that means fewer women to study.
Other, larger studies have also reported mixed results: in some, women reported that hot flashes caused MS symptoms to flare up. Because those with MS are more sensitive to heat and the neurologic symptoms of MS worsen temporarily when the body is overheated (Uhthoff’s phenomenon), controlling vasomotor symptoms such as hot flashes and night sweats may be more urgent for women with MS to retain quality of life.
Women who have had surgical menopause in particular notice a worsening of multiple sclerosis symptoms, possibly because the fall off of hormones tends to be much more dramatic and sudden.
In a study published in 2016, researchers found the impact of menopause on MS was “statistically significant” (meaning there is a likely correlation) but that the effect of menopause on the progression of MS was “modest” (approximately 1 Expanded Disability Status Scale point over 10 years).
How to manage menopause and multiple sclerosis
MS and menopause symptoms can overlap, making it difficult to distinguish typical menopause symptoms from a flare up of MS.
Symptoms they have in common include fatigue, bladder issues, depression, waning libido, vaginal dryness, brain fog, and mood swings. If you’re unsure whether what you’re experiencing is a perimenopause or MS, you should consult your doctor. Tracking your periods to note irregularity may help you determine what’s happening in your body.
For the most part, according to a study on MS medications and menopause, MS doesn’t change the age of onset of menopause. Women taking the medications methylprednisolone and beta interferons (IFNβs) may enter the transition earlier, though the studies aren’t yet large enough to determine correlation.
Once you’ve determined you’re experiencing peri/menopausal symptoms, you can begin to take steps to manage those symptoms. Because HRT may have some protective effects when it comes to neurological issues, it’s worth having an in-depth discussion with your doctor, ob/gyn, and any other medical support on your team.
Additionally, HRT may help with reducing hot flashes and maintaining bone density, both of which are particular concerns for women with MS.
Managing menopause with MS is much the same as managing without, says the UK-based MS Trust: wear removable layers and keep a cold drink nearby for hot flashes. Keep your bedroom cool and have a cooling towel by your bed for night sweats. Exercise regularly, practice good sleep hygiene to get as much quality sleep as you can. Consider yoga and meditation for relaxation and reducing anxiety. Take the best possible care of your body and spirit as you can. In addition, many women find their symptoms are lessened when they reduce caffeine, alcohol, and sugar. Definitely quit smoking if you possibly can.
As a society, we don’t really discuss menopause, so many if not most women are caught off guard by perimenopause symptoms. We often don’t expect the hormonal fluctuations in our early or mid-40s, nor are we aware of the symptoms that can occur just about anywhere on our bodies and aren’t just limited to hot flashes and irritability.
Unexpected and unexplained symptoms are a concern for anyone, but it can be much more alarming for those who may experience similar symptoms for another reason — such as an MS flare-up. So it’s even more important for women with MS to understand the symptoms of perimenopause, when they might occur, and how to manage them.
Are you dealing with MS or another chronic illness? How has it impacted your menopausal transition? How do you manage both? Please share your story with the Gennev community via our Community Forum.
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