How many of us fighting fibromyalgia are also fighting endometriosis? What is that like and how do we deal with it? Amanda Pratt LCSW, CPLC, has so graciously answered my questions about her endometriosis and fibromyalgia symptoms. Amanda gives us some amazing advice and tips on dealing with endometriosis symptoms.
How old were you when diagnosed with Fibromyalgia?
When I was 29 years old, second semester in graduate school at the University of Michigan.
When were you diagnosed with Endometriosis?
A couple years later – August, 2015 (I suspected I had it for more than 10 years prior to my diagnostic surgery though)
Which diagnosis came first?
Fibromyalgia – mostly because Endo requires surgery to diagnose
Do you have any other diagnosis or conditions? If so, what are they and were they diagnosed before or after the Fibro and Endo?
I was also diagnosed with Systemic Lupus Erythmatosis, Rheumatoid Arthritis, Hypothyroidism all from 2013- 2015
What are some of the symptoms that you experience?
- Brain Fog
- Chronic Widespread Pain
- Gastrointestinal problems
- Food Sensitivities
- Sensory Sensitivity
Do these symptoms affect your daily life? Have you had to change the way you live? If so, please explain.
Absolutely. I’ve had to completely change my lifestyle, mindset and activity level to accommodate and reduce symptoms. I can’t work a ‘regular’ job due to my need for frequent rest periods. Also, I have a hard time making and keeping friends due to people just not understanding how my illness affects me. I experience pain daily and the fatigue completely cripples me when it comes up unexpectedly.
If not already stated above, was diagnosis a long road for you? Please tell us a little about the struggle to figure out “what was wrong”.
I suspected I had endometriosis since I was 16 but doctors would either tell me to just deal with it (because there wasn’t any viable treatment options) or they couldn’t do the surgery because I didn’t have access to health insurance. It took 13 years to get an Endo dx. The Fibro dx happened within a few months of symptom onset (I had access to a great doctor at the time I was in grad school) and the Lupus/RA overlap Dx came a couple years after symptom onset, because doctors were ‘wishy washy’ on whether it was lupus or something else acting like lupus. When I responded to lupus treatments favorably, they made the official dx.
What are some of the ways you deal with your endometriosis and fibromyalgia symptoms that have helped you get through them?
- Stress Management
- Pain Management Techniques
- Focusing on Radical Self Care
- Frequent Rest Breaks
- Creative Expression
Are you on medications or have you tried medication for any of your conditions? If you would like tell us about what you have been through. What has helped and what hasn’t?
I take Cyclobenzaprine daily, which helps with both my Fibro and Endo and some of my joint pain. I also take prednisone daily or every other day at a low dose and dose higher when I’m in a flare. In addition, I take a DMARD called Minocycline to help with my RA/ Lupus Joint inflammation. I take levothyroxine for my hypthyroidism. I’ve found that if any of these meds are missed, the cascade of everything effecting everything else begins and my functionality declines.
As a result of my endometriosis I also have anemia. My iron has a hard time binding to my blood cells. Do you also have this, or is there anything else you experience directly related to Endo?
I’ve tested positive for anemia since I was 16 and they always told me ‘you’re just anemic’ – whatever that means – but I do personally feel it is connected to my chronic health conditions – especially my lupus and endometriosis. My platelets also are low and so is my blood pressure, especially in a flare.
How old were you when you started having pelvic pain? Have your periods always been unusual or painful? Did you have fertility problems?
I think I was 12? I started having pelvic pain prior to starting my menstrual cycle, but they couldn’t figure out what caused it. Ultimately, I don’t want children so I haven’t encountered fertility problems due to it not being an aspect of my life.
Do you have any tips or advice to give to others in either getting diagnosed, treated or living with Fibromyalgia and Endometriosis symptoms?
Don’t give up hope – know that the healthcare system is NOT set up for people with chronic health concerns. The louder and more persistent we are about demanding adequate health treatment, the more they will be forced to listen to us and do something about it. There is power in numbers and also power in sharing our stories.
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