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A woman stands with her head pointed down and her hands on her back, stomach, and hips, obviously distressed and feeling pain in those areas.

Endometriosis and Fibromyalgia

Last month, I was diagnosed with fibromyalgia after over 6 months of crippling symptoms; Already being in the chronic illness community, I was already pretty familiar with the disease. For those who aren’t familiar, fibromyalgia is a disorder that causes widespread muscular pain, fatigue, and sleep issues. They say that those with fibro are more sensitive to pain than others because it affects the way your brain is processing those signals.

Understanding fibromyalgia pain

Most commonly, the pain is in specific areas such as hands, feet, back, and hips. The pain can range anywhere from sharp, aching, or throbbing. Mood and memory issues along with light sensitivity are other symptoms some may have. Because each women’s body reacts differently to the disorder, this can cause issues with a diagnosis. Those who have a history of emotional or physical trauma or other chronic illnesses have a higher risk. Therefore, I’ve come up with my own personal theory that I wouldn’t have fibro if not for my history of endometriosis.

The first signs and symptoms

I remember my first flare really clearly. My hip began throbbing as if it was on fire, so badly that the skin around it hurt to touch. Something as simple as pulling my pants over my hip would hurt so bad I’d do it slower and more carefully. Pain like this made it hard to walk, something I was familiar with due to my recurring endometriosis flares. Weeks would go by and then another flare would appear, this time in another place. Within a month period, I had the same pain in my hands, feet, toes, and legs. Tingling was another symptom most commonly in my hands and feet. My nerves seemed to be on overload and my emotional state was becoming overwhelming.

It’s scary to have new symptoms. It brought me back to when my endometriosis became a daily issue and I didn’t know what was happening to my body. The flares were beginning to happen more often and it was hard to keep up with. Because I was familiar with fibromyalgia, I had a gut feeling that was what was happening. Though without a diagnosis, I still felt on edge and I knew I had to take action immediately.

Finding someone who listens

The first doctor I reached out to was my general practitioner. I explained my symptoms in detail. The throbbing hands, the painful skin, my disruptive sleep issues, and the aching muscles in my body. I was heartbroken when the first words out of her mouth were, “You should talk with your psychiatrist. This seems more like an anxiety issue”. As mentioned before, I do suffer with anxiety disorder, but because of that, I know anxiety versus a physical issue.

I left feeling as if it was all in my head. If my GP wouldn’t listen, then who would? I made an appointment with my psychiatrist to rule that issue out so I could move forward with more evidence. He reassured me that these symptoms were not my anxiety disorder. Of course, my anxiety could make the flares worse or more often, but that itself was not the root issue. Leaving this appointment gave me back a little hope. I went home and researched doctors that work with fibromyalgia patients and soon made an appointment with a rheumatologist.

The waiting game

I waited months to get in and in that time, I was falling into a deep depression. Ovarian cysts were sending me to the ER often and my fibromyalgia symptoms made everything worse. The day of my appointment, I was so anxious I could hardly sleep. This seemed to be my last option for answers. They told me they were looking at either a rheumatoid arthritis or fibromyalgia diagnosis. Fibro seemed more likely because I didn’t have many autoimmune symptoms, but they would do bloodwork just incase.

Finally, a diagnosis

My bloodwork came back negative and I was officially diagnosed with fibromyalgia. Being diagnosed with a disease or disorder is nothing anyone wants to hear. That being said, a diagnosis can give us a peace of mind that it isn’t “all in our heads”. Knowing there is a name to the pain you are experiencing gives you the validation that we all deserve when we are chronically ill. My next steps were then trying treatments and figuring out how to manage life with endo and fibro.

Balancing a life with both diseases

It’s been discouraging, I’m not going to lie. For my fibro, the things that have helped so far have been physical therapy and muscle relaxers. With my endometriosis, anti-inflammatories can really help, but because this pain is so different, I have to learn about new treatments. I’ve tried other medications that have relieved pain for others but had horrible side effects. I am unable to take common fibro medications like Cymbalta and Lyrica. I strongly encourage those who do have fibro to ask your doctor about them, based on the success I’ve read about.

I’m learning to adjust to the fact that I will have to work harder than I did before. Realizing this is exhausting in itself. I am looking forward to trying other treatments soon like acupuncture, massage, vitamins/supplements, and meditation. When I first got sick with endometriosis, I began scrambling for anything that could help. It’s awful that I’m back in that position, especially because endo pain still controls a lot of my life. What keeps me positive is that I know I have the strength to do this, because I have done it before. Fighting becomes second nature to us. It might not be fair, but we are more than capable of doing so.

Feel free to comment about any fibro remedies you have tried, symptoms that bother you the most, or tips on dealing with both illnesses!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • jewel
    3 months ago

    I have had Endometriosis since a teen, and severe RA, Fibromyalgia, and IBS for last 40 yrs. I am 61yrs now.
    My worst complaint is that the doctors never explained a thing to me. I was married at 17 and pregnant with my first child. It was a blessing though we both almost died from toxemia. After that I had two tubular pregnancies caused from Endometriosis. No one ever explained the cause to me at the time! I lost 4 pints of blood and almost died with second one.
    Teen girls and boys should be informed of Endometriosis and Fibromyalgia. Invisible diseases that are debilitating and endometriosis can be life threatening if pregnant.

  • Jessie Madrigal moderator
    3 months ago

    Oh @jewel it sounds like you have been through so much! I agree with you and feel your frustration. Very few doctors seem to make the time or the effort to explain things thoroughly, especially after surgery when we are sedated and barely awake. In my case, things changed when I found my specialist, who not only sat down with me the day after my surgery (so I had a whole day to recover) but we had follow-up appointments where he would explain everything all over again. Sadly, he has now retired so I have to find someone else to help me 😉

    Thank you so much for sharing your thoughts with this community and highlighting the importance of good medical support. I hope you are feeling better now, and that you reach out to us whenever you need to. – Jessie (team member)

  • jewel
    3 months ago

    Thank you for your kind words.
    Because of severe cramping I had a hysterectomy at age 29 including removing the one ovary with was left after the second tubal. They said there was endometriosis all over my intestines which they could not remove. I still have much cramping in abdominal area. I have taken estrogen ever since hysterectomy and I don’t know if it affects the endometriosis or not. But I do believe the endometriosis has contributed to me having IBS-D.

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