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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Thank you for your sweet and thoughtful words. I gained great insight from a fellow RLS sufferer, SalemLake, to whom I'm replying today. I hope you find that reply, which may be helpful to you. This site is a godsend for membership communications about this torturous condition, I'm sure you agree. I believe my journey may actually finally become a peaceful one.
Best to you as well.
I agree, shame on your doctor for not telling you in your late 40s to stop the HRT and go through menopause. That’s what Mother Nature has ordained for us. It’s become a cliche, but “it’s not nice to fool Mother Nature.” With that said, it’s always been my understanding that Estrogen/Estradiol is heart protective via lowering the bad cholesterol and raising the good. So even though you’ve stopped the patch I would continue to monitor your cardiovascular system.
I also have a theory about your case, I think the Estradiol led to an overgrowth of Candida albicans in your GI tract. It’s a natural and needed part of our gut - when it’s in it’s unicellular yeast form. When it grows and turns into a multicellular fungus beast it makes you feel like you’re being poisoned and are dying. You have no appetite, it steals your nutrition, it clings to the walls of your intestines and gives off toxins into your blood stream that make you fatigued, dizzy and out of it. Many doctors don’t recognize this condition. Some do. There is an antibody test for it, but you need an order for a blood draw and it has to be sent to a lab that tests for it, like Great Smokey Labs. A heavily coated white tongue is another sign of Candida overgrowth.
You see, the Estradiol allows the Candida to escape your innate immune system. I wouldn’t be surprised if the Estradiol allows other microrganisms to do same, hence your bouts of pneumonia. And of course blood clots and strokes are known side effects of HRT, but for some reason I thought more so with Progesterone. Plus, I thought estrogen was never prescribed without Progesterone anymore because of certain cancer risks? Though that may not be a concern if you don’t have ovaries? But what about breast cancer?
Anyways, I digress. My main point is, HRT only makes the “symptoms” of RLS worse. It does not further down-regulate our already genetically lousy dopamine receptors the way the DAs do. To the contrary, it may even do just the opposite. It may up-regulate them. Hence your reprieve from all RLS symptoms when you stopped the HRT in the hospital. If my theory is correct, you should have a nice, but short (a few months?) reprieve from RLS symptoms. Without the HRT, your receptors will crawl their way back to lousy baseline. Fear not, I and numerous people on here, find that taking one or two 25 mg capsules of ferrous bisglycinate on an empty stomach about an hour before bed stops the RLS cold… for one night. There’s an explanation for this which I won’t get into in this already long (but fascinating 😅) post.
Also, I would knock off the tryptophan. It’s still an unknown in terms of RLS. Since it’s a precursor to melatonin (which definitely makes RLS “symptoms” worse) it’s not worth the risk, so I think.
I'm so sorry for posting this late. The site doesn't alert me by email when I've received replies, and I've been so ill I wasn't checking in every day.
Your reply and advice were a joy to receive; everything you offered is right on! Thanks to you, I am finally seeing a light at the end of this long and tortuous tunnel.
Although I barely mentioned the GI component, you picked up on it immediately. I actually have a history of candidiasis following a long period of antibiotic use. In the seventies, the malady was a popular subject, creating awareness in many of us living in Southern California. I was diagnosed with it after tests were conducted by, I think, the very lab you mentioned - Great Smoky Labs. I don't, however, remember whether I was prescribed a pharmaceutical anti-fungal. Beginning a regimen of unsweet kefir and high-quality, refrigerated acidophilus complex may have arrested it, I'm not sure. It certainly helped to restore the healthy bacteria the antibiotics destroyed. But the research I've done so far suggests only pharmaceutical anti-fungal meds work to eradicate candidiasis.
Your understanding of candid overgrowth and estrogen/estradiol is phenomenal and rings so true, particularly your comment about feeling like you're being 'poisoned and are dying'. You're either a fine physician or a highly experienced and body-aware similar sufferer. I had the deepest feeling something like this was happening, but ripping off the estrogen patch and trashing my supply wasn't my best idea ever. After the fourth day, I realized I'd become bitchy, depressed, my BP was erratic again, and I was losing sleep. A little research confirmed that it's best to taper off to avoid the sudden return of menopausal symptoms. I sent my doctor a portal message asking that we reduce the next mg size down, then the smallest soon after, then cessation. I had been told 0.005 was the smallest size, when in fact, it's the largest. I haven't heard back yet. Maybe you can tell I'm dealing with enormously incompetent medical people. I found a patch I had misplaced, and after putting it on, the menopause stuff stopped, but the other symptoms I previously discussed returned. I can't be certain which condition is worse, and I'm not sure what to do at this point, other than rattle my doctor's cage on Monday. Thankfully, I have an appt on the 19th with the best GI doc in the county, which I've waited for since September 2022. He may want to do an endoscope and will work with me I'm sure on investigating this problem and providing any needed meds.
I would love to further discuss with you the comments of your fourth paragraph. What are DAs and why does ferrous bisgycinate work for only one night? I did quit taking the tryptophan and slept better last night with less RLS.
One thing I haven't mentioned: I also suffer with constant 'burning mouth syndrome' (BMS) which is as mysterious as RLS. During the absence of my patch in the hospital (and those recent four days) I had no BMS. I find it interesting that I'm increasingly aware that the two conditions occur in unison and in well-defined patterns. Candid overgrowth is often described as a 'burning' sensation', and candida, of course, resides in the mouth as well as the gut and other locations. It can even become systemic and cause all sorts of horrendous problems. My mother had gut problems all her life and died at 56 of unexplained sepsis with no other evident cause. I wonder . . .
That's enough to pile on you for now. I will patiently await your reply - and will check this site daily!
Hi Cheri, yeast/fungus is so aggressive. You give it an inch and it will take a whole city block. The only solution is to test for it. You’re right, I am a victim, not a physician. I checked and saw it was actually a lab called AAL that did the analysis of the Candida antibodies. I first got it when I was in my mid -30s. Normal is .1 to .9. I was a 3.2 and a blue ribbon winner. Top 5 in my allergist’s office. Then I would go up and down as the years went on - always being fooled by it. Nystatin and zero sugar was my allergist’s treatment, but it takes months to feel better and they no longer make the powder form of Nystatin which is probably superior to the pills. I have been in normal range for many years now. I put it up there with RLS. Tell your GI Doc it’s a must to test for. You can stop sugar and simple carbs immediately. And there are natural anti-fungals, including berberine. People with RLS should only take berberine in the morning. Diet and even probiotics usually aren’t enough. Consistency is key. Candida can live off any food we eat, but sugar is its favorite.
Tapering off HRT is a good idea, rather than cold turkey, but it’s a must, so I think. DA means “dopamine agonist.” The Ropinirole you took is a DA. Though it helps with symptoms it tends to down-regulate our already lousy dopamine receptors so none of us should take it. Taking a highly bioavailable form of iron before bed helps because serum iron (not ferritin) plummets at night, in everyone. Since people with RLS have very low brain iron (it’s a hallmark of RLS) we rely very heavily on that serum iron. When it plummets at night, with a nadir of midnight, we get RLS. So sneaking your brain some iron at night very well might help you, even if your ferritin is normal.
Low dose Trazodone at night might help you sleep - 25 to 50mg. It’s an old antidepressant that is no longer used for that purpose. Most antidepressants worsen RLS, but not that one. Time to end the suffering. Keep us posted!
My GI doctor doesn't believe I have candidiasis, because the only symptoms I have (of a long list) are weakness/fatigue and my eyes are sensitive to light. I cut out all sugars and high carb foods decades ago. Belly pain is much improved. I had just started taking a good brand of berberine (Thorne), and he agreed I should continue it for prevention and because it's good for the heart. We agreed we'll watch for additional symptoms. I think it's more likely (or in addition) that I have poor bile production from a missing gall bladder, compromised liver, and other factors. The solution for that is Tudca or ox bile, or better yet and cheaper, kefir. This is the most powerful form of fermented (cultured) cow's or soy milk. I've been using it for a week with great results. It's an old favorite of mine that I was recently afraid of for no good reason. I'm now consuming about 3/4 cup/daily, and digestion and energy are very much improved. Besides improving gut bacteria health, kefir also produces/regulates bile. Here's a complete explanation (cut and paste to browser or search Dr. Berg on Kefir):
Five days ago, I reduced my 0.05mg Estradiol patch to 0.0375mg. Already, RLS symptoms are cut nearly in half. I'll do this for a month, then consider the next dose reduction. Using the lower dose for only a month may invite a difficult withdrawal, that remains to be seen. There's only one lesser dose after that, so I may want to finish off with a very low estrogen cream.
Regarding DAs, I find it highly interesting that hormones are not considered DAs per se, but according to many medical sites, testosterone, estrogen, and glucocorticoids interact with each other and impact dopamine levels. This can affect brain maturation and cognitive function in adolescence and into adulthood.
Researchers in a recent study posted on the National Library of Medicine site wrote that sex hormones are “highly intertwined” with dopamine, serotonin, GABA and glutamate. They said that these interactions are complicated and not entirely understood, and called for more research to fully understand how dopamine interacts with other neurotransmitters and hormones.
Thorne brand ferrous bisglycinate (50mg for the last five days) may also be helping. My ferritin (after an infusion last year) is normal, but I'm aware of the 'iron crossing the brain barrier' problem but hadn't found an answer. I'm not sure it would be working this quickly, but I do believe in it, and thank you for your suggestion.
I tried Trazadone (50mg), after my PCP had a good laugh ("Where do you keep getting this stuff?"), but found it made the RLS worse. However, I probably still had what must have been a tiny amount of Methadone in my system, since it has such an insanely long half-life, and the drug is absolutely not to be taken with Trazadone, because they interact poorly. Narcotics aren't considered DAs, but they affect dopamine, right? Medical literature states that Trazadone can worsen RLS, and I wonder under which circumstances. I will try it again in a couple of weeks (a smaller dose, perhaps) if there's still a problem.
With this tentative improvement, one significant problem remains. I had Covid a year ago in March, and after it robbed me of all but 2% of my ferritin, I had an infusion at a cancer clinic in town who does iron and chemo infusions. They've been following me since, and after I contracted parainfluenza and double pneumonia May 1, they stepped in when the hospital found a moderately sized nodule on my L lung considered suspicious and possibly malignant. A biopsy couldn't be performed because I was too sick, so a pet scan was ordered. I had to wait weeks, but it was performed last Thursday, and they found the nodule had increased somewhat in size. The cancer doctor has ordered a biopsy, which I'm waiting to have scheduled. The fact that I haven't gained weight (I've lost over 40lbs) since mid-April, despite high calorie/high protein foods and supplements, could be due to cancer. My doctor claims he feels certain that if it's malignant, it's in early enough stages to treat without chemo, because the pet scan shows no evidence elsewhere in my body. He admits he won't know anything certain until after the biopsy.
I want to thank you for your great advice and compassion. Let's stay in touch.
Hi Altruist, I am sorry you had to go through such turmoil for many years. I have been taking 300mg of Gabapentin and 50mg of Trazodone for 2 years. My RLS is well controlled.
I'm glad your regimen is working for you. After posting my history, I gained great insight from a fellow RLS sufferer, SalemLake, to whom I'm replying today. I hope you find that reply, which may be helpful to you. Thank you for your concern.
So many things in your experience are familiar while others are not but it is very helpful to learn others have had such serious issues and yet have found some answers. Thank you for sharing. I have had 3 iron infusions and now take 4 types of magnesium daily. Both helped immensely but I eventually had to add Ropinerole knowing that I would probably have to make changes in 5-10 years. As with my migraines, I constantly have to monitor and decide when to adjust my treatments for RLS, doing research and looking for answers year after year. My dr. is patient and helpful and we work on these issues constantly. Support groups have become invaluable to me over the past 4 years. Thank you.
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