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.
Merena coil has made a huge impact for the better on the quality of my love inner the past 4 years, I've been diagnosed for 8.5. Though I now understand a lot more about why my body experiences/behaves in certain ways, I now feel more and more that my body is 1 single system, I stopped trying to understand each thing and just try to put my energy into managing and living one I have the information that helps me. Everyone is different.
Initially, I agreed to try it to reduce blood loss, leading to low ferritin levels<10 usually. I have paroxysmal atrial fibrillation and low blood pressure. Heavy bleeding every month then led to increased episodes of atrial fibrillation, fainting etc.
Before the coil, like others have written, I had days of exacerbate ms symptoms eg fatigue which exacerbated balance etc. It took a while to settle into a regular pattern, but I am very glad I stuck with it to put it mildly. I still have very light bleeding, still have some exacerbation of ms symptoms (physical and cognitive fatigue and dizziness being the most impactful), but no longer feel a week has to be "written off" the way I did prior to having the coil. I do have months when I may feel like my body thinks I still have heavy periods but when I take a closer look, lifestyle factors eg stress, not being as conscious of pacing etc may explain a lot.
I would like to say that in addition to the improvements I have and continue to experience re ms/afib, it has the benefits of reliable contraceptive and supporting enjoyment of sex. Though it is a product that exists for those reasons and so as "silly" as it may sound, I did not choose it for either of those reasons but to help myself with a body that is doing pretty well to keep me enjoying life with a "bit of internal wiring" trouble. It does however support me as that person to enjoy more of life without always having to think ms first. And we all deserve a bit of that .....
I do have issues re heat and cold, certainly experience it at different times of my cycle, different central heating (work goes from freezing to boiling as far as my body is concerned), I find dressing in layers helpful so I can add/remove as fatigue worsens- this is my sign that it's affecting me, which is hard to notice when busy at work.
Cold water of the back of my neck helps, sipping cold water, having a breeze if possible.
Thank you, as usual. I also feel a bit fatigued during the first two days of menstruation, but on the other hand when I menstruate I feel that my body is "working properly", which is a good thing, so I just accept mood swings and feeling a bit worse than usual. In my personal view, it's "part of the game".
I would have to take time off work every month my fatigue and symptom flare ups would be so bad. The marina IUD made a huge difference, a little worsening of fatigue still but that was about it. I have now switched to the mini-pill and though not quite as effective as the IUD still much better since no 7 day break. I think more needs to be done to make women aware that they don't have to have a 7 day break when taking the pill.
I have always had a question about what was optimal hormonal wise for MSers re contraception. So it sounds like the Mirena usually is not that systemic, even though its progesterone only, compared to a progesterone only pill which would be potentially harmful? After getting MS, I've opted for non-hormonal contraception, the copper coil, but I would rather not have periods just for life-style reasons due to my mountaineering hobbies. Is the Mirena ok because it's often not that systemic? Or is it really patient specific? I am a bit confused on that. I'd rather opt for health over convenience but if I can get both safely that is information worth having! Thank you for your high quality information.
Interesting topic. I had crippling endometriosis from my mid 20s to early 40s. I didn’t know I had MS at the time. Not until I was 40. I’ve wondered if the 2 are linked. I had various surgeries and meds so I could conceive easier. And over 15 years had 3 out of 6 live babies. At 44 I had a hysterectomy. At first everything seemed wonderful. Then a year later, despite HRT, the MS kicked off, from running short distances to hobbling about. Now at 62 I have oestrogen gel and I’ve told my GP I’m staying on it until I die. There seems a definite hormone link and worsening symptoms.
I am a women with young onset Parkinson’s and we experience the same issues of worsening neurological symptoms in week before and for some in the week of the period. I am building an app to track this and looking to do research to prove the correlation as we only have retrospective evidence from survey or single case reports. We need evidence to that we can have clinical guidelines written. Www.MyMovesMatter.com
I would add blood loss = magnesium loss. Magnesium gets pulled out of storage in bone or muscle to keep blood levels level. Low magnesium = worsening spasticity plus messing up calcium/magnesium ratio.
That's exactly my experience. And I experience something similar even during my menopause. I do not have menstauations anymore. But still feling not well once a month with similar symptoms. Hormons are still active, I guess?
I was diagnosed at the menopause which is when my symptoms started to worsen. Looking back I had what I now know to be my first ms symptoms at puberty. I mentioned it to my consultant but he dismissed it.
I always feel fatigued - both physically and cognitively -during the first couple of days of my period and experience symptoms like tingling toes and fingers. Sometimes I feel like I have legs of lead, which is also the case when it is hot and/or humid.
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.
Merena coil has made a huge impact for the better on the quality of my love inner the past 4 years, I've been diagnosed for 8.5. Though I now understand a lot more about why my body experiences/behaves in certain ways, I now feel more and more that my body is 1 single system, I stopped trying to understand each thing and just try to put my energy into managing and living one I have the information that helps me. Everyone is different.
Initially, I agreed to try it to reduce blood loss, leading to low ferritin levels<10 usually. I have paroxysmal atrial fibrillation and low blood pressure. Heavy bleeding every month then led to increased episodes of atrial fibrillation, fainting etc.
Before the coil, like others have written, I had days of exacerbate ms symptoms eg fatigue which exacerbated balance etc. It took a while to settle into a regular pattern, but I am very glad I stuck with it to put it mildly. I still have very light bleeding, still have some exacerbation of ms symptoms (physical and cognitive fatigue and dizziness being the most impactful), but no longer feel a week has to be "written off" the way I did prior to having the coil. I do have months when I may feel like my body thinks I still have heavy periods but when I take a closer look, lifestyle factors eg stress, not being as conscious of pacing etc may explain a lot.
I would like to say that in addition to the improvements I have and continue to experience re ms/afib, it has the benefits of reliable contraceptive and supporting enjoyment of sex. Though it is a product that exists for those reasons and so as "silly" as it may sound, I did not choose it for either of those reasons but to help myself with a body that is doing pretty well to keep me enjoying life with a "bit of internal wiring" trouble. It does however support me as that person to enjoy more of life without always having to think ms first. And we all deserve a bit of that .....
I do have issues re heat and cold, certainly experience it at different times of my cycle, different central heating (work goes from freezing to boiling as far as my body is concerned), I find dressing in layers helpful so I can add/remove as fatigue worsens- this is my sign that it's affecting me, which is hard to notice when busy at work.
Cold water of the back of my neck helps, sipping cold water, having a breeze if possible.
Thank you, as usual. I also feel a bit fatigued during the first two days of menstruation, but on the other hand when I menstruate I feel that my body is "working properly", which is a good thing, so I just accept mood swings and feeling a bit worse than usual. In my personal view, it's "part of the game".
I would have to take time off work every month my fatigue and symptom flare ups would be so bad. The marina IUD made a huge difference, a little worsening of fatigue still but that was about it. I have now switched to the mini-pill and though not quite as effective as the IUD still much better since no 7 day break. I think more needs to be done to make women aware that they don't have to have a 7 day break when taking the pill.
I've always noticed worsened symptoms during my cycle but didn't know if I was imagining it or not!
I have always had a question about what was optimal hormonal wise for MSers re contraception. So it sounds like the Mirena usually is not that systemic, even though its progesterone only, compared to a progesterone only pill which would be potentially harmful? After getting MS, I've opted for non-hormonal contraception, the copper coil, but I would rather not have periods just for life-style reasons due to my mountaineering hobbies. Is the Mirena ok because it's often not that systemic? Or is it really patient specific? I am a bit confused on that. I'd rather opt for health over convenience but if I can get both safely that is information worth having! Thank you for your high quality information.
I use continuous oral contraceptive pills. They work wonders to prevent monthly misery for me
Interesting topic. I had crippling endometriosis from my mid 20s to early 40s. I didn’t know I had MS at the time. Not until I was 40. I’ve wondered if the 2 are linked. I had various surgeries and meds so I could conceive easier. And over 15 years had 3 out of 6 live babies. At 44 I had a hysterectomy. At first everything seemed wonderful. Then a year later, despite HRT, the MS kicked off, from running short distances to hobbling about. Now at 62 I have oestrogen gel and I’ve told my GP I’m staying on it until I die. There seems a definite hormone link and worsening symptoms.
I am a women with young onset Parkinson’s and we experience the same issues of worsening neurological symptoms in week before and for some in the week of the period. I am building an app to track this and looking to do research to prove the correlation as we only have retrospective evidence from survey or single case reports. We need evidence to that we can have clinical guidelines written. Www.MyMovesMatter.com
I would add blood loss = magnesium loss. Magnesium gets pulled out of storage in bone or muscle to keep blood levels level. Low magnesium = worsening spasticity plus messing up calcium/magnesium ratio.
That's exactly my experience. And I experience something similar even during my menopause. I do not have menstauations anymore. But still feling not well once a month with similar symptoms. Hormons are still active, I guess?
Somewhat worrying in light of this discussion:
https://dailyclout.io/dr-naomi-wolf-details-the-chamber-of-horrors-the-jab-poses-to-womens-reproductive-health/
I was diagnosed at the menopause which is when my symptoms started to worsen. Looking back I had what I now know to be my first ms symptoms at puberty. I mentioned it to my consultant but he dismissed it.
I always feel fatigued - both physically and cognitively -during the first couple of days of my period and experience symptoms like tingling toes and fingers. Sometimes I feel like I have legs of lead, which is also the case when it is hot and/or humid.
Every month it's drama again, as if the life is being sucked out of you. I've tried everything but an IUD or contraception gives me migraines again
I just accepted that I'm just not feeling well two weeks a month