Today much is made of being healthy, of the importance of health and wellness. I have always been “healthy” – I still am technically, even with my chronic pain and fatigue conditions. But through the years I have come to think of health as my Doctor does, as things like a healthy lifestyle with good food and regular exercise, a healthy weight, good blood pressure, normal lab work. I have those things. When I think of “wellness” I think more of my “well being” instead of whether or not I am feeling good at the moment – because for the past 15 years I have had pain and fatigue and other symptoms every single day. In fact, I haven’t had a day without joint pain since my second Lupron shot back in 2001 – but more on that below.
But I have had a few pain free hours, and with “skills and pills” (as my Chronic Pain psychologist used to say) I can get my pain and discomfort to fade into the background for a while most days. I have learned that I can feel good about feeling bad – well, or to at least be “okay” with it. I have also applied all my skills as a research scientist (in Ecosystem Ecology) to my own medical condition. This has given me a sense of power and control over the uncontrollable nature of the symptoms caused by my chronic conditions (I have several) – but all were eventually eclipsed by the diagnosis as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS – also known as ME/CFS/SEID etc…). Whether they are caused by hormonal, mitochondrial, nervous or immune system related problems (probably all of the above), does not really matter in my day-to-day management of my symptoms, since there currently are no treatments. I manage my symptoms by eating healthy, walking and doing yoga for exercise, making sure I get good sleep, and pacing my activity and rest. I am able to be active at a slower, relaxed pace. I am working hard to be as “healthy” as I can be, treat my symptoms individually, and I try to focus on my wellness and well being. Our bodies are amazing things, and though I have felt for years than mine let me down, I have discovered that in reality it is a complex and amazing thing. Even with genetic predispositions and chemical assaults, I am trying to support my body so that it has the best chance to heal itself, and I am getting better.
For those who want the details of my predisposing conditions and my healthy journey with endometriosis, Lupron and CFIDS, here is a more or less chronological account:
As a baby I often had allergies with earaches and fevers. This was considered normal. When it is actually a sign the immune system is kicking into action for things in the environment that “should be” normal. For me they were an allergen.
In elementary school my knees and ankles hurt, and all my joints were “funny” – in that they bent back farther than everyone else’s, which was entertaining on the playground. The Pediatrician said this was nothing to worry about and these were “just growing pains.” He suggested my parents have me take ice skating lessons to strengthen my ankles. In fact, 35 years later I was diagnosed with benign hypermobile joint syndrome, a condition which causes joint pain, inflammation and other symptoms.
We are Born with Endometriosis
At age 12, with my first menstrual cycle I had horrible cramping pain. I was told “this is normal for some girls” and given a hot water bottle and told to take Midol®. I knew this was not “normal” but no one could tell me why I felt this way when my girlfriends did not. My mom understood and taught me coping skills so that the pain would not stop me from enjoying life. Each month the pain worsened. I can recall my major life events in my teens and twenties by whether (or not) I was on my period and in terrible pain. By my mid-twenties I had to miss a day of school or work a month to manage the pain. I was prescribed Motrin® and birth control pills to manage my cycles. Over time pre-menstrual symptoms began, so I had pain and discomfort before and during my periods. It felt like I was just recovering from one cycle, and could enjoy one pain-free week, and then PMS would begin the cycle all over again. My doctors were sympathetic but really could not do much for me. They offered birth control to help control my cycles. I started with low-dose pills, which would help for a while, but as pain and heavy bleeding would return they would move to a stronger pill. In my late 20s a diagnostic laparoscopy confirmed I had endometriosis and fibroid tumors. It explained all I had been experiencing since age 12. I felt vindicated that I had been going through was NOT normal. But all they could do was recommend I go off birth control, so that my husband and I could try to have a baby as quickly as possible. I stopped taking birth control, knowing my abdominal pain would get worse, but we hoped to let nature take its course on the timing of a baby.
Odd Mono-like Viruses
During the 1980s, in my 20s, in college as an undergrad and after periods of high stress (such as finals), I had several multi-week episodes of fatigue, sore throat, swollen glands, flu-like symptoms. I was always tested for Mono (which always came back negative) and was always told I “had a virus.” I always bounced back from these, and went back to my worsening month-to-month endometriosis symptoms.
Hypothyroid Hormone Crash
I was in Graduate School in the 1990s, in my 30s, and having the time of my life doing research I loved and advancing my career. However, after the high stress of prepping for and passing my PhD oral exams in 1994 I crashed, as “everyone does,” but this time I didn’t bounce back. I was beyond tired with a new the bone crushing fatigue (I attributed the many other vague symptoms to my endometriosis). I guessed I might be anemic from my heavy bleeding during my periods, but my blood work showed a high TSH level, indicating, that at age 35, I was hypothyroid.
As most do, my doctor prescribed Synthroid® which restored about 80% energy, but my endometriosis was worsening with menstrual migraines and month long pain. One lesson I learned was not to assume that all my symptoms were related to my endometriosis, although the hypothyroidism had almost certainly made my endometriosis and infertility worse. By the end 1997, since I already had secured a good career position, so that when I filed my dissertation my inability to get pregnant and my endometriosis were my primary concerns.
Infertility Treatment Treats Endometriosis
When I was unable to conceive and wanted to get pregnant, I was referred to a Reproductive Endocrinologist. He did extensive testing, followed by extensive surgery to remove numerous marble sized fibroid tumors and patches of endometriosis (treatment that, at least in the 1990s, was not offered to me unless I wanted to have a baby). What followed was three years of infertility (IF) treatments, with repeated cycles that included my doctor balancing my hormones, then giving me stimulating hormones to grow eggs, followed by interuterine insemination. I knew the IF process would caused the endometriosis and fibroids to regrow, and two more laparoscopic surgeries were needed to remove them again, as well as scar tissue caused by the previous surgeries, to give me the best chance to conceive. We were not successful, but at least had no regrets for not having tried.
However, I was left with worsening abdominal pain from endometriosis and fibroids stimulated by the fertility drugs, and very difficult choices to make regarding treatment. I considered hysterectomy but I really wanted to avoid it because of my scar tissue issues, and because I wanted to keep my ovaries. I researched Lupron and knew there were risks. What I didn’t know was that I had pre-disposing conditions that made it riskier for me and more likely I would have a bad reaction. We were more concerned about scar tissue causing lifelong abdominal pain if I had more surgery. Lupron seemed like the conservative choice to shut down the endometriosis and shrink the fibroids. I was told the treatment would be six monthly Lupron Depot injections. I insisted on, and my doctor agreed to, low dose hormone add-back therapy (estradiol and progesterone, prescribed separately) to minimize side effects.
With my first Lupron depot monthly injection (in Dec 2000), I had the expected mild menopausal side effects. The second injection the following month added severe joint pain in all paired joints to the hot flashes and other symptoms, but in addition, my abdominal pain went down! I was told that the joint pain should go away after about 6 weeks, but unfortunately, it did not. By the end of Lupron treatment my abdominal pain was reduced by half (and was considered a success) but my Doctor recommended we stop treatment after 5 injections due to the joint pain. I was assured the joint pain should stop with the treatments. In fact, it has never gone away. Eventually, I was referred to a rheumatologist. I reported my negative experience with Lupron to the adverse drug events sections of the FDA.
Post Lupron Joint Pain
My doctor recommended that I take the birth control Depo Provera to try to maintain the “Lupron gains.” This was mid 2001, and it worked for a while, before the abdominal pain and bleeding slowly returned, and then worsened. During this time, I still thought the endometriosis, hormones and abdominal pain caused the fatigue, nausea, and unwellness I was experiencing. Between my primary care doctor and my rheumatologist, they were treating my individual symptoms and watching me become more symptomatic. By 2002 my joint and abdominal pain was so bad I was on 8 vicodin a day and high dose ibuprofin.
Chronic Pain Clinic – “Skills and Pills”
I was referred to a chronic pain clinic (CPC) to receive better prescription pain management and cognitive behavioral therapy which helped me to learn coping skills like mindfulness meditation, self-hypnosis, and other skills in order to “feel better about feeling bad.” Thanks to the “Skills and Pills” of the two year Chronic Pain Clinic program, my pain was now under better control. I was still working fulltime, but more and more days from home a few days a week now as the fatigue, brain fog, headaches, flu-like symptoms all worsened along with the ab pain.
Minimally Invasive LAVH-BSO
At this point, I am still thinking all the fatigue and other symptoms are primarily from endometriosis pain, and that Lupron triggered the arthtitis due to HMJS. My rheumatologist blamed the Lupron for triggering it all (still does). My primary care doctor, rheumatologist and Pain Doctor all witnessed my decline. By the Fall of 2003, I was bleeding so badly I sought a referral for a minimally invasive GYN for an LAVH-BSO. To manage the endo, it was agreed the ovaries had to go. He did a great job. I have only very mild discomfort around my bikini scar – otherwise no further ab pain at all. I went on Vivelle Dot patch immediately. Minimal menopause symptoms at age 44.
Diagnosed with CFIDS
The Joint pain continued and the rest of the ME/CFS symptoms intensified through 2004-2005…I was struggling to keep working 3/4 time with “reasonable accommodations”, getting sicker and taking FMLA because I was out of sick leave. I was working so hard trying to keep working. Finally, an endocrinologist in 2005 said I met all the criteria for CFIDS (and told me it was ridiculous to blame the Lupron…she was wrong). My pain was managable but not the fatigue. I took the Bruce Campbell course in managing ME/CFS and added “Pacing” to my list of skills. By late 2006, I was facing medical retirement after 22 years and by June 2007 I was out on Federal Disability Retirement at age 48.
Thanks to my Kaiser Doctor’s observing my decline and my own ability to write, I was awarded SSDI on first appeal in 2008. Technically it is for chronic pain but really it was the fatigue, flu-like symptoms and brain fog that kept me from working. And still today keeps me from being as active as I once was.
Living Well with CFIDS
These days I have to sleep 8-10 hours per night. I used to take daily 2 hour naps but since starting Armour Dessicated Thyroid with T3 (in 2013), I get by with horizontal rests, not daytime sleep most days now. I have a 1:3 activity to rest ratio – for each hour of activity, I need about 3 hours of rest. I consciously “rest before and recover after” extra activities not part of my daily routine (from laundry to a doctors appointment to dinner out).
I keep regular hours, and most days I am able to make meals, take a 30-60 minute walk and can manage one “extra activity” per day. I do a bit of volunteer work. I leave the house 3-4 days a week for 1-3 hrs without a setback, depending on what I do. I can grocery shop (with effort) but no longer shop for pleasure. Despite this careful pacing ANY infection, social event, life stressor, or simply too long duration of mental, emotional or physical activity can tip me over into Post Exertinal Nueroendocrine Exhaustion PENE. I have a 36-48 hour PENE/PEM response (the time from the over-exertion to the crash) with increased flu-like and CNS symptoms and usually must rest 3 times as long as whatever caused the crash took to do. After a bout of flu or an abscessed tooth, I have had bad dysautonomia episodes that resolved over weeks or months to my “baseline” – my “new normal” since Lupron activated or switched on (or off) a gene or damaged my mitochondria and reset that baseline. For me, the Lupron was the turning point. It is a tough balancing act. But I have worked on pacing, keeping healthy and being as active as I can.
Ironically my husband of 30 years has Fibromyalgia and knows keeping active helps him. So we support and encourage each other. He helps me be active and I remind him to pace and rest and we have a happy life, all things considered. He was able to retire at 55 so we are able to manage our conditions and enjoy life. We have a truck-camper RV and a small cabin-cruiser boat from before I got sick, both of which have allowed me to travel and do things at my own pace, with my own bed, bath and kitchen. Whether we are visiting family or traveling the West, this kind of travel allows me to be as active as I can without causing crashes. We are both very grateful for all we have.
It seems there are many ways to end up with the same or similar body response and set of symptoms that is ME/CFS and/or Fibromyalgia. For me if it hadn’t been Lupron, it would probably been something else since I have so many co-morbid factors. Understanding this has helped with acceptance. And knowledge is power. I know there are no ways, yet, to reset the genes or fix the mitochondria, or other body systems that no longer work as they should, but I am hopeful researchers, who care and collaborate, will find the answer. In the meantime, I will work to be as healthy and well as I can be.
Dear Dr. Myers, Thank you so much for writing this article. I am 31 (32 next week) and I experienced similar things as you and the journey is still going. I had an intussusception at 6 months old where they had to remove 6 inches of my colon and fuse me back together. Since then, I had always had bowel and stomach problems. Growing up I had mono in the second grade for about 4 months I was out of school. Then when I started getting my period in the 6th grade I suffered immediately. I was told it was normal but the bowel issues, the horrid pain, heavy bleeding, etc. was awful. I knew it wasn’t normal but I was told it was and I was told that I couldn’t let it keep me from doing things. I had to stay home 1-2 days per month (or more- because my periods were sporadic). And as the pain and symptoms got worse I also ended up vomiting the first day of my period each month from the pain. I cried a lot. I asked for ER visits, doctor visits, specialist visits – and I went. They all said I was normal. It wasn’t until 4 years into this period misery that a 5cm cyst appeared on one of my ovaries and I was sent to GYN at Children’s Hospital Boston (Children’s knew me and my family well – they did the bowel surgery for me). When I was seen by the GYN and head of gynecology he said “I think you have endometriosis.” I cried. I didn’t want something to be wrong but I was also happy to be validated. I had my first laparoscopy in 2001 confirming the endometriosis diagnosis. It is worth mentioning that 8 years after I had mono the first time, I got it a second time (even though they say you can’t get it again). And the mono came about around Halloween both times (the summer to fall transition of the year). In 2006 I went on Lupron shots with aygestin as add back therapy after having had a second laparoscopy and having tried a few other pills/treatments. The first shot was okay (they were 3 month shots) and I had to keep a daily calendar journal to rate on a scale of 1-5 how awful I felt. But it wasn’t long after the first shot that I started feeling gross, warm, and like death warmed over. I was in pain and I felt awful. Thankfully, it managed to improve a little bit making me think I was better (but I wasn’t). Since then I have been on almost every endometriosis treatment available. I refuse IUD’s and the arm implant one because they freak me out. Depo-Provera caused my teeth to have tiny cavities (5 at once) and I never usually have cavities. I have gotten maybe 4 cavities over the course of 27 years. But I had 5 just appear one day and I have been going to the dentist every 6 months – so they sprang up out of no where. I stopped that shot as soon as I could. I have had EBV reactivate off and on since the last bout of mono. But I still feel awful. I am exhausted in varying degrees, I get low-grade temps out of no where, feel pain every day (was diagnosed in 2006 with fibromyalgia during Lupron time), and depending on what I do, how much I do, stress, etc. depends on how I feel. I am now being tested to rule out rheumatology stuff because they think I have CFS. I have every single symptom on webmd’s site (the common and rare ones) for CFS. And in addition – which I find interesting, is that I am ever so slightly immune deficient in IgG. I feel like a mess.
I also have IBS, generalized anxiety with panic, agoraphobia with panic, and mild depression.
I try not to let it get me down but it is hard. On a hunch I looked online to see if anyone else has had CFS related to Lupron and I came upon your post.
I thank you for sharing your story. It helps knowing we are not alone.
Hi Dr. Myers,
I am in tears after reading your article. I was beginning to think that I would never be able to get any answers about my symptoms. I used to be active, fit, energetic, and happy. Now I try to get through each day without 18 hours sleep, falling, or wiping away tears. I have nearly all the same symptoms you have but still no diagnosis. As a child, I was was sensitive to chemicals, had extreme allergies and frequent infections, too. My periods frequently kept me from activities for 1-2 days. About 5 years ago (at age 30) I could no longer tolerate the pelvic pain and reached out to my gynecologist- She started Lupron Injections. In the last 5 years, other symptoms developed and were addressed by: 2 family physicians, neurologist/ sleep specialist, cardiologist, pain management physician, gastroenterologist, and psychiatrist(not to mention countless ER doctors). None of them have been able to do anything but run tests and treat symptoms. I have to see 5 of them regularly just to treat the symptoms. I am 35, losing my ability to work full time, and most importantly- I can no longer keep up with my 3 year old for more than an hour of play.
My symptoms/treatments: chronic pelvic pain, had 5 pelvic surgeries for endo (led to hysterectomy and oopherectomy, three-6 month stints on lupron, mono, sleep apnea treated with CPAP, insomnia, excessive daytime sleepiness, chronic fatigue, vitamin D deficiency, excessive exhaustion after strenuous activities or stressful times, pain management, depression, anxiety, mood swings, IBS, random diziness, light/sound sensitivity, cold extremities, frequent chest pain, and inability to concentrate.
I keep digging and my savings and patience are both nearly gone. I have seen so many doctors who seem to do the same tests over and over without getting to the root cause. All of them keep trying to push medication or saythey just don’t know-and that isn’t good enough! I need answers and a long term plan.
You really seem to have gotten your illness under control. Do you have any advice for someone trying to learn their own balancing act with complete medical care?