Chronic Fatigue Syndrome

In my last post, I mentioned not feeling well lately. I continued to feel relentlessly fatigued and brain fogged, so I went to the doctor. I did not go to my old worthless doctor, but found a new M.D. whom I love. He’s an older man with experience. I checked him out on Yelp and healthgrades.com and his patients gave him glowing reviews, describing him as empathetic and taking time with a patient. I found this to be true, and then some. When I mentioned I had a high deductible, he didn’t waste time on routine blood tests, but listened to me speak about my symptoms, came to a conclusion and ordered specific tests based on what he thought was a probability.

I told Dr. Epstein how profoundly fatigued I’d been, that the glands in my neck were often so swollen, my lower jaw numb was numb. He thought I had Chronic Fatigue Syndrome and said there were blood tests for it. I also am on thyroid meds, so checking my thyroid levels was ordered also.

My thyroid is in the hypo zone, but not terribly. Dr. Epstein increased my meds to get me where I need to be.

All along I’d figured my fatigue was a remnant of chemo, but the thing that threw me was after gradually feeling better over the last five years, more recently I spiraled backwards.

I tested positive for the Epstein-Barr virus. And, yes, my doctor is named Dr. Epstein. Ironic, yes? A positive reading is greater than 21.9. Mine was 600. He told me I had this for a long time. He asked if I’d had extraordinary stressors, which can trigger a full-blown episode. I gave him the short version: Within a two-year span, I went through cancer treatment, divorce, lost a house, and made a major move. Fulltime employment while trying to recuperate didn’t help either.

Unfortunately, there’s nothing medically that can be done for CFS. Life situations have to be adjusted instead. The biggest hurdle for me right now is work. It’s hard to get through an eight-hour day let alone the 40-hour week. I used to say I could do my job in my sleep — and now I’ve proven it. In the last few weeks I’ve used some sick time. Toward the end of the week, my body just can’t take it anymore. I stay in an entire weekend, feeling flu-like and exhausted. The good news is that the increase in my thyroid meds made me feel a little better, at least in the past couple of days so I’m hoping it sticks. I’ve definitely had a spike in energy and can get through the work day better.

Dr. Epstein and I also discussed that I’ve only had routine mammograms for cancer followup and the reports note my dense breasts. Before I even volunteered the information, he said mammograms aren’t worth much in my case and that I should have a breast MRI. He recommended an oncologist who could treat me in cancer follow-up.

For now, I don’t know how often I’ll be blogging, but probably not weekly. Conserving my energy physically, mentally and emotionally is my priority. I’m certain I won’t abandon the blog completely, although I don’t see me finishing a book anytime soon. I’m so brain-fogged, I truly don’t know if this blog post makes sense, but I think it mostly does in a rambling sort of way.

Oh, there is a bright side. CFS has its own ribbon. You know I’ve wanted another illness ribbon. I mean, who doesn’t, right?

CFS Ribbon

Comments

  1. Glad you found a great doctor, Eileen; sorry you have to deal with all these health concerns. When I become God, everyone will be healthy, carefree, and not have to worry about chocolate being fattening.

  2. Ugh the ribbons….
    So glad you got checked out & your symptoms weren’t the c word…but CFS is no walk in the park either. Thanks so much for the update…been thinkin’ boutcha. xx

    • Kimberly, that was my reaction exactly. It’s not the “c” word! Dr. E. said, “I’m so sorry to give you this news because there’s no treatment…” and I’m thinking: But it’s not cancer!

  3. The Accidental Amazon says:

    Oh, crap, Eileen. I’m so, so glad you found a much better doctor; he sounds wonderful. But Epstein Barr & CFS?? Well, isn’t that special? @#$&*!!

    Yeesh. Hugs. 🙁

    Kathi

  4. Shit. Not what you needed. But (at least in the case of a friend of mine with CF, ) it has good times between the bad. But still, it sucks.

  5. Sorry to hear you’ve picked up another ribbon, but glad its not cancer AND glad you have a good Dr.

  6. I’ve been thinking about you, Eileen, wondering how you are. I am glad you found a doctor you’re comfortable with. I am sorry you continue not to feel well. Taking a break sounds like a good idea. I am about to do that myself, especially because I’ve been experiencing a lot of fatigue the last few weeks. (Plus there have been some major changes at work I would love to talk to you about when you have a chance.) I am not surprised about the ribbon since our society appreciates the labels. I wish there were no reasons for ribbons to begin with. I hope your health improves as you re-adjust your routine. xoxo

  7. Hi Eileen, This post was very coherent, and i appreciate your sharing what’s happening with you now. Wishing you better health.

  8. Oh Eileen, I’m so sorry to hear you are dealing with this but also relieved you finally have a diagnosis and can now start to plan your way forward. Wishing you lots of love, Marie x

  9. I’m glad you’ve found a Dr who can give you the time and support you need. Let’s stick with the two ribbons now, two is plenty enough for any of us xoxo

  10. I have been challenged by CFS since April 6, 1989. That’s starting to feel like a long time. I was diagnosed with breast cancer in 1990 and have had two separate mastectomies. No reconstruction – too much extra stress on my body.

    Last July I had pneumonia and last month I had Influenza A and B (yes, I had my flu shot). Each time I have an additional illness, it knocks me down. And I never come quite back to the CFS baseline. So now I’m doing “aggressive resting.”

    People will tell you that they are “tired all the time, too.” I say that calling CFS “tiredness” is like calling a teacup the ocean.

    I am sorry for your diagnosis. As you are already seeing, it will impact your life to a greater or lesser extent. But I believe you will adjust, as I have, and be able to do what you have to do. My thoughts and love are with you. And I’m glad you have an understanding doctor. I’ve been lucky on that, too.

    • Lois, thank you so much for your comment! It made me feel like I had company in all this weirdness. You’re so right. Someone said to me, “We’re all tired.” But it really is like comparing a teacup of liquid to an ocean. Apples and oranges. Although most people have been quite understanding.

      Sometimes I feel like I have the flu and just want to collapse. Other times, I’m functional. It’s unpredictable but I know rest helps a lot.

      I’m sorry you’ve had so much going on. I do think we lose something that’s never regained with each big illness hit. Thanks for assuring me that I will adjust. You would know and I trust I will do the same. Thanks again for your comment. So appreciated. xo

  11. Eileen, I’m glad you found a doctor you can rely on! I’m sorry you have to go through this crap and feel so badly and depleted after a regular work week. Just take care of yourself. I’m patient and can wait until you feel good enough to blog. And yes, those illness ribbons. A real perk.

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