My story won't apply to everyone, of course, but you may find a nugget worth considering. I've had mild RLS intermittently for forty years until it recently worsened. I'd always managed it with weighted heat, L-Tryptophan, magnesium glycinate, L-Theanine, and if necessary, a little pacing. At age 36, I had severe endometriosis followed by an emergency hysterectomy. To manage sudden menopause symptoms, I used a compounded natural hormone replacement cream from yams. This was a combination of estrogen and other hormones in proper balance. Besides the continuation of RLS, I did fine on the hormones.
Then we moved to a rural desert community where I could no longer get my compounded hormones. I felt that I needed them to sleep and basically to function. At the time, thirteen years ago, it was impossible to have the cream sent to me. I didn't have a doctor who could/would prescribe it, anyway. So, I allowed myself to be convinced the Estradiol patch at the low dose of 0.05mg/day would safely solve the problem. It's a synthetic, though, and I have never done well with synthetic substances. She insisted the Estradiol and yam compound were chemically identical, and I didn't listen to my instincts. I was in good health, and decided I could handle any side effects. Which I never looked up or thought about again.
The doctor and I never discussed the fact that I may no longer need hormone therapy after so long, All I knew about the dangers of estrogen supplements was that dangerous clotting can occur, which was the doctor's only warning. I've watched medical reports closely since then.
During the thirteen years we've lived here, and I've used this patch, I've contracted pneumonia three times, had a mild heart attack, five major joint replacements, and both carotid arteries are over 70% blocked by plaque. GI problems developed and worsened during this time. Beginning the first year, my RLS gradually worsened. Treatments included Ropinirole, Gabapentin, the new Horizant, various anti-depressants, sleeping meds, and shelves of natural, potentially helpful solutions, including the L-Tryptophan, magnesium glycinate, L-Theanine, and weighted heat packs I'd always used. All of these either didn't work or eventually stopped working.
With RLS, there's an obvious genetic component, certainly in my family, but I've never believed genetics are a 'death sentence'. Unless death is inevitable, there's always something you can do to improve your health, even with serious conditions. Stress is also a component, and I became dedicated to keeping it at a minimum. I also became determined to end this tortuous insanity.
I finally realized that I didn't have RLS symptoms during the periods of joint replacements when I was using narcotics. I didn't want to take them if I had discomfort not associated with surgery, but since Mayo's RLS clinic was using them as a resort, I saw a pain doctor to treat my mild chronic spine pain as well as RLS. I began taking 5mg at bedtime, with Gabapentin 800mg two hours prior. This worked fine for two years - until recently. During all this time I was still using the Estradiol patch.
Recently, when my RLS became severe and completely unmanageable, I came closer to death than ever in my 73 years. My health had quickly deteriorated, culminating in a loss of 40 pounds I couldn't afford and double pneumonia. My immune system was in shreds, and something unexplained was causing rapid and severe weight loss with fatigue and weakness. I was in constant, unretractable pain body wide. I had developed 'atrial flutter' which caused a very rapid pulse, and I had constant, blinding headaches. I was beginning to have suicide ideation; I felt hopeless.
After eleven days of a horrible hospital stay, I was discharged even sicker than when I was admitted. At home, I struggled with everything above and tried to figure out my next moves. My cardiologist and pulmonary MDs both became very involved, ordering many tests that were ultimately unhelpful in explaining my many symptoms. A nightmarish month passed with little improvement, despite my good appetite and constant work on getting extra calories and continuing excellent nutrition. During this month, I gained one pound, two ounces.
Out of exhaustion, I slept for a couple of hours four nights ago. I woke with one thought.
During my hospital stay, I was without my Estradiol patch the first seven days. They last a week, and I was supposed to change it the day I was admitted to the hospital but forgot. I continued to forget to ask my husband to bring one until the eighth day. During the first seven days, I had been sleeping (in a busy hospital!), eating well without discomfort, had much less pain, my BP and pulse were always normal, my mood was normal, even bright, and best of all, I had no RLS.
Then after I replaced the patch on the eight day, all of the old symptoms creeped back. This pattern wasn't crystal clear then or after returning home because I was so full of antibiotics, steroids and who knows what else. I couldn't tell anymore what was causing what. Since arriving home, I'd at least been able to return to good food and care, and I was thinking clearer.
It was the scheduled date for a patch replacement. I ripped off the one currently stuck to my belly and tossed it, and then tossed the box full of them. I had no business taking this drug at my age with my history and cardio genetics. I knew for a fact what had been wrong all along.
This is the fifth day without the estrogen patch. I've studied the side effects of estrogen replacement, specifically Estradiol, and find I had put myself at great risk. The data lists every symptom I had suffered with for so long, which is now a terrifying memory, including the torture of severe and long-standing RLS. I suggest to fellow sufferers the following:
1. Address iron and magnesium deficiencies. Obtain a competent hematologist.
2. Try the above solutions I used before my RLS became untreatable.
3. If you can afford it, work with a competent doctor with advanced knowledge of metabolism or a Functional Medicine MD. It could save a lot of time and suffering, instead of trying to figure things out yourself.
4. Reserve drugs like Ropinirole and other Parkinson's Disease drugs as a last resort. They're often difficult to tolerate and are complicated to withdraw from. Plus, you will most likely 'augment' after 7-8 years, when the drug will begin to make the condition worse. The new gabapentin, Horizant, may help.
5. Consider low dose Methadone - it has a longer half-life than other narcotics, so it lasts from dusk to dawn. It doesn't cause a 'narcotic high' and is very effective for pain and RLS. Buprenorphine is a similar alternative but is so rarely prescribed that it's hard to get drug insurances to cover it, and drug stores to carry/order it. I was unable to tolerate it at all.
6. Exercise as much as possible, especially mild cardio and meditative stretching before bedtime. Reduce carb intake, eliminating refined ones like sugar, and end food intake at least 3 hours before bed.
7. Reduce stress at all costs. Hide away if necessary for alone, quiet time every day and approaching bedtime.
I'm happy to discuss this subject with anyone here as time allows.
Cheri
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