Life Is Swell

Nichelle has requested that I post a few photos to show the extent of the swelling she is dealing with. We actually have one or two photos that are worse, but she doesn’t want those posted.

Since the return of the fibromyalgia symptoms in force, about the time NaNi was weaned, Nichelle has battled rather significant swelling at various times. This winter, it became much worse. At best, the swelling is bad; typically it is horrible.

Note the dramatic difference in the leftmost photo with the middle photo. These were taken only two days apart, on December 25 and 27, 2005, respectively. These primarily show the face, but the swelling involves the whole body. On most days, the swelling is very significant, somewhere between the rightmost photo and the middle photo.

We are awaiting an endocrinology appointment in about a week. The previous endocrinologist to whom Nichelle was referred refused to see her because there wasn’t anything in her records to indicate an endocrinological problem (for the most part, until recently, the swelling hasn’t been our biggest focus). A cardiologist she visited told her, “Sometimes my patients have swelling in their legs and ankles when they return from cruises because of all the high-sodium food.” Our excellent neurologist was more perceptive. Nichelle had brought these photos in to show him—he was stunned. He also pointed out that the swelling alone can cause a great deal of pain.

Our voluntary medical advisor/patient advocate Beth suspects Cushing’s Syndrome or some form of hypercortisolism. So far, Nichelle’s symptoms are consistent with that, including stretch marks on the skin in many places, and swelling varying in degree at different times of the day.

Nichelle spent a couple of hours last night going through photos from the past three years. There are obvious periods lasting several months when the swelling was very bad, and times when it was mostly gone. In general, the very bad swelling lasted much longer than the times without. There’s also a clear increase, over time, in what we might call “base level” swelling, but even within that ever-raising baseline, there are days when it is worse than others, as the photos above show.

I had actually forgotten how much smaller she was even within the past year. No amount of exercise or dieting seemed to help, either. She lost 30 pounds (after Naomi was born) doing the South Beach Diet, and was intensely exercising for an hour every day. Neither one of these things prevented the swelling or the fibromyalgia symptoms from returning, and exercise is supposed to be a very effective long-term treatment for fibromyalgia.

I’ve created a new category on the BLOG for posts related to fibromyalgia. It’s available on the categories list at the right, or from the bottom of any post classified as such.

(See related posts: What’s Wrong with Nichelle?, The Twins Are Back: What’s Wrong with Nichelle, Continued, and Pain; or view all posts categorized as related to fibromyalgia.)

4 Replies to “Life Is Swell”

  1. Nichelle,

    I’m so sorry this is happening to you. We love you very much and appreciate who you are, and if there’s anything we can do, plese let us know.

    with love,

    The Sohmer’s

  2. We have decided to let another doctor live.

    Nichelle saw a rheumatologist today for the first time. He said, “You definitely have an endocrine problem,” and was glad Nichelle has an endocrinology appointment on Monday. He also scheduled a full bone scan and some endocrinology-related blood work.

    This was comforting. Nichelle was fairly flying to find a doctor (well, an M.D.) agreeing with what we’ve been told by others. (I’ll need to start looking for some Moxie to send to Beth.)

    Unfortunately, for the past 5 hours she’s been wiped out my moderate to severe migraines. She actually went off the chart of the “0 to 10 / unmedicated childbirth” scale in pain, and we were within minutes of taking her to the emergency department.

  3. Every winter seems to feel like a death sentence for me, all I do is keep telling myself spring will help relieve some of the pain..I pray you to find relief

  4. Wow! Those pictures are dramatic- especially two days apart. I know the weight gain has nothing to do with calorie intake, but the effect of cortisol and water retention. I have been praying for your endocrinology appt for weeks now and will continue to be praying! I will pray that your pain is better.

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