The most painful time of the month, living with rheumatoid arthritis and getting my period.

It’s clear to me that my immune system is temporarily more active as my hormone levels change during my period.  

What the Arthritis Foundation says about Rheumatoid Arthritis and Menstrual Cycles.

Question: Can my menstrual cycle affect my PsA? 

Answer: Many young women with inflammatory arthritis, including psoriatic arthritis and rheumatoid arthritis, report flares in their symptoms when they have their period. Hormones such as estrogen may have an influence on the immune system. The relationship of flares in arthritis symptoms at the time of menstruation may also be due to the effects of pain perception related to estrogen. When estrogen levels are low, women report more pain. In clinical trials, those given a placebo without estrogen have more joint pain than those given estrogen. Thus, the lower levels of estrogen during menstruation may be a cause of the increase in joint pain that many women with arthritis report. 

My history with my menstrual cycle has been bumpy

In my teens and twenties my menstrual cycle was rarely regular, it was common too I would skip getting my period for months at a time. Around 24 is when I started to notice pain in my back, hands, wrists, feet and ankles, it was on and off. Doctors told me I should exercise more, watch my posture and to wear a wrist brace because it’s carpal tunnel from my job as an esthetician or not being active enough. No doctor ever properly examined me. I didn’t know how to advocate for myself, I was young, naive and afraid of having any sort of health issues. Today I feel like my health should have been taken more seriously, by myself and by my health care professionals but this is something I had to learn over time from experience and why I became a patient advocate. 

Something I have discovered over the years is that I am not the only woman out there who’s health wasn’t taken serious because of age and sex.

My irregular periods and because I was on birth control pills made it difficult for me to tell I was pregnant with my son. I found out I was pregnant with him when I was already 6 months along! For the first trimester I barely had any pregnancy symptoms and I believe I was dealing with undiagnosed rheumatoid arthritis for a number of years prior, so I didn’t feel that different since RA causes pain, fatigue, malaise. They say women tend to go into remission when they get pregnant with RA but I am not so sure I was lucky there. Research also suggests that there is an autoimmune response after pregnancy that brings out rheumatoid arthritis aggressively, which was definitively the case with me.

I was on the pill but I wasn’t the best at remembering to take it (that pesky brain fog?). Thankfully my baby boy was healthy, today I call him my hidden miracle because I never wanted children but he changed me for the better and has brought me so much joy. Now that I can’t have any more children I am extremely grateful for that hidden miracle.

When things really went wrong

During my my last term in pregnancy I struggled with preeclampsia, which today I wonder why they didn’t test me for rheumatoid arthritis because they kept going on about proteins in my blood and inflammation. I was extremely swollen and in an incredible amount of pain, after pregnancy some of that swelling went away but the pain only worsened. Still it took two years after my pregnancy and myself asking to be tested for rheumatoid arthritis to have my pain taken seriously. My family doctor at that time said it’s probably not RA, I’m too young, I didn’t have enough swelling. I am grateful that was my first step advocating for my health and asking for the test and referral to a rheumatologist to further investigate my concerns.

Now at 34, finally regular, multiple diagnoses as to what’s going on with my body, a few gynecologist consultations and surgery later I understand my health a lot more, not completely, but far better than before. I’ve also discovered a lot of doctors do not know enough about rheumatoid arthritis and the medications we are on. It can take a few different ones til you find the one who will listen and find answers with you.

My history with birth control and what I’ve learned from it

Shortly after the birth of my son I developed menorhaggia the only thing that would stop the bleeding was a Mirena IUD, this was before my rheumatoid arthritis diagnosis, five months after the birth of my son. After it’s insertion the bleeding stopped and I did not get my period for 3 years. About a year and a half after it’s insertion is when I was diagnosed with rheumatoid arthritis.

Then the bleeding returned and wouldn’t go away for a number of months. This happened when I was quite new to my rheumatoid arthritis diagnosis and did not have a clear understanding of the medication or drugs yet. I was on Orencia but it was doing nothing for me. Somehow I developed a pelvic infection from the mirena IUD, during this time my mental health was all over the place, I had extreme night sweats, my period was coming every other week, I had intense pain in my hips and stomach which I figured it was just a rheumatoid arthritis flare, I was still in my journey of trying to find the right medications sop I was used to being sick but didn’t quite understand RA.

It takes months to see a rheumatologist, the one who understands our disease best, so I was seeing a gynecologist for my bleeding answers, who also take time to see and the testing takes time. It also takes time to become an adherent patient and get over those bumpy feelings of grief. At the time the gynecologist only said to me the Mirena IUD is causing my bleeding after an ultrasound and a number of canceled appointments and wait lists. Once it was taken out my symptoms got a lot better however when I finally got in to see my rheumatologist she was shocked the gynecologist waited so long to take it out because I could have gone septic. Remember, not all doctors have a clear understand of RA or the medications – infections need to be taken seriously with this disease. That’s where I decided to ask my rheumatologist who she recommends as a gynecologist. Her referral was the first time I ever felt heard and taken serious.

When I did see  gynecologist who walked me through biologics, rheumatoid arthritis and my reproductive health I decided I would be having no more children with this body so I had a bilateral laparoscopic salpingectomy (tubes tied). During this surgery is where they discovered I have mild endometriosis and also removed a cyst. Some answers to my pain were answered.

Using health tracker to understand my own health

My participation with Arthritis Research Canada’s study on physical activity with rheumatoid arthritis using a fitbit and their OPERAS app has given me a clear visualization of patterns with my overall health. Since I have gotten into tracking my symptoms and I’ve taken on the habit of noting my feminine health a bit more carefully. I’ve noticed a thing or two how this plays a role in my rheumatoid arthritis and depression. During and about a week before that time of month I experience:

  • An increase in pain
  • Increased fatigue, I fall behind on everything
  • Increased appetite, especially for sweets and something salty
  • Increase in depression and self loathing. I become a mega bitch.
  • Nightsweats
  • Bloating
  • I gain about 30 lbs just breathing
  • I get a zit or two
  • Once a month my uterus feels like it has a balloon expanding inside me that wants to pop, pressure and pain usually 1 week to 1 day before my cycle starts

My periods usually last 3-4 days but I feel them coming on about a week before, mostly with fatigue, nightsweats, increased appetite and low mood. It takes me a few days after to get back into things because my rheumatoid arthritis and depression flare up. With my period I am often left curled up on the couch for a few days which also increases stiffness and pain with both my rheumatoid arthritis and osteoarthritis. After each period I feel I need to “get back on track” because of how much it takes out of me.

What I do about this

I am not a big fan of tampons anymore. After having a pelvic infection caused from my mirena iud and how my body reacted with being immunocompromised and on biologics I am weary of what foreign objects I put in my body without consulting with my rheumatologist first. Because of toxic shock syndrome fears I don’t use tampons regularly, only if I am exercising and I remove it right after or it’s the only thing available. I use pads normally.

To relieve pain I try to stay active by going for a walk and doing stretches to keep my joints from becoming stiff and painful, which help a little but I can’t achieve much due to the fatigue that accompanies this time of month. A hot bath or heating pads help relieve some tension. Usually this time of month is when I use my CBD oil to help me sleep with some Tylenol Arthritis or Midol Extra Strength. This isn’t a quick fix but I have to do something. I’m usually a couch potato during this time.

I also try to make a point during this time of the month to be gentle and kind to myself. I get my period because I am only human and I have rheumatoid arthritis because of the same reason. I will pick myself back up again after I fall.