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CatchMyPain Community and Pain Diary App to manage chronic illness

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Jun 08, 2016 3:36 PM

I am 28 and a long time sufferer of chronic pain that wasn't diagnosed until about 5 years ago. I suffer from debilitating endometriosis as well as Fibromyalgia and arthritis. The endo and fibro are the two that bother me the most. I spent years of my life not understanding my pains and having just about every doctor I'd see telling me that it was all in my head. This paired with family and friends not believing me led me to start questioning my own sanity. At the time, someone as young as me having fibro was let something you saw everyday and endo was just starting to be diagnosed. It took years of emergency room visits, low energy, lots of tears, and pleading until I found two doctors who would actually listen to me and my complaints. I was first diagnosed with the endo and shortly after was diagnosed with the fibro. Unfortunately the treatments for the endo did nothing and the fibro just made the pain I was already in worse. The doctors were at a loss because a lot of the meds to control the fibro interact badly with the endo. So to this day I am completely uneducated for my pain and I deal with it. There are some days when all I can do is cry and others where the pain is almost nonexistent. I am hoping that by joining this app that I can find others like me who have found better ways to cope with their pain. Thanks for letting me ramble.

Jun 08, 2016 6:29 PM

Welcome to our community family KrysEnvy! I'm sorry to hear that none of your doctor's have been able to help you with your pain. I'm 54 and have had endometreosis since 1986. When it was first diagnosed they told me to get pregnant or go on birth control. Having a toddler I opted for the birth control. My second child was born in 1988 after a scare off an ectopic pregnancy, due to endometreosis that pushed the ovary down and behind the fallopian tube. The doctors put me under to abort the pregnancy, but ended up cleaning out the ending and tracking the ovary in place, saving the pregnancy. Unfortunately I began developing medication allergies, birth control of any kind was one. So I suffered through each month until they took my uterus out in 1995, in an attempt to stop the invading endometreosis. It did not work, as we found in 2003's oophorectomy (ovarian mass) there was endometreosis all in my lower abdomen. Then in 2010 they went back in to remove a large paraovarian cyst, and found endometreosis as high up as the low stomach. I was also eat up with scar tissue badly, which took hours to clean out my pelvis. The docs are hoping now that I don't have any female organs left I won't be bothered with cysts and endometreosis. I'm hoping I never need surgery to find out! Lol I did needed surgery in 2012 to close off pelvic veins that were causing tremendous pain all the way to my feet; pelvic congestion syndrome. And I hope that is the last pelvic surgery. My sister had laser surgery to completely clean the endometreosis out, from below her breasts throughout her abdomen. She's had no recurrence since, 10 years ago.

I've had fibromyalgia since 2007 but it wasn't dx until 2012. They tried me on several meds and cymbalta worked well for 6 months, but then I began having reactions. I've had arthritis in my knee joints since the late 80's, and my spine since 1992 (OA and DDD). The OA has now spread into my hips and shoulders. I was dx with sjogrens (Autoimmune) last year, which is also attacking my joints of my hands, along with eyes, nose, & mouth. After the sjogrens dx I was put on plaquenil and thankfully it even reduced my fibro pain, lowering my daily avg pain from a 7-8 to a 3-4. I had tried so many meds already but I kept having to add them to my allergy list (huge!). The plaquenil was a blessing in disguise, even if I did have to get another dx to receive it. I also kept complaining to my docs that something other than fibro was going on. It took an oral biopsy to get the sjogrens confirmation, and an endocrinologist to confirm I had hypothyroidism.

Our illnesses aren't in our heads. It just seems to take so long to find out what's going on that docs, family, & even we ourselves begin to wonder. If you question things going on, keep a good record of symptoms, treatments that did or did not help, side effects, etc. I used hearing pads and hot water bottles, as well as drinking 3-6 oz blackberry wine on very bad months of endometreosis pain before losing my uterus. It helped thin the blood flow, as well as help the painful cramping. I hope you can find a team of good compassionate doctors, who will have ways to help you reduce your pain. I have a Urogynecologist, Orthopedist, Rheumatologist, PCP, Endocrinologist, Opthalmologist, Pain Specialist, and more (for all the other chronic pain conditions I've had since the 90's). Lol ๐Ÿ˜‰ Hugs & prayers you can find the best coping method for you! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒผ

Jun 09, 2016 1:31 AM

Welcome!!! I have had pain since I was 22 years old, diagnosed with CRPS/RSD but then have had undiagnosed new pains all over my body since then, with the original severe foot pain recurring 2 years ago. I am hopeful that someone may be able to put the pieces together soon, but also I am focusing on acceptance. If life stays this hard, I will still be ok. Glad to have you part of this community.

Jun 09, 2016 2:13 AM

Hi KrysEnvy,
Welcome, welcome, welcomeโ˜บ. You'll find compassion and acceptance in this group, as well as helpful ideas.

I found myself grimacing and nodding as I read your post. Like you and many if not most here, I too was told my symptoms were psychological. For decades.

I was dx with IBS at 18 and migraines at 23. Then decades later, I was dx with MS in '02 and then dx's and dx's some more, with fibro, arthritis, abdominal scar tissue from c-sections (that just re-forms with attempts to remove it), with knee lcl, back problems, ulcer type stomach issues, vestibulitis, bla bla bla.

In those decades in between diagnoses, I thought I was going crazy and getting stupid and becoming horribly lazy. I became suicidally depressed. I lost my job and the ability to work, lost my home, relationship, relatives and friends. I knew nothing about disability and was too proud to ask for help. And I tend to isolate when not feeling well. So, most of the time.

I know about emergency room visits, being treated like a drug seeker, white knuckling it... . Yes, you're in with an understanding group here. So welcome, KrysEnvy. Hope to hear more from you.

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