Hi! I'm Jill, and I live with chronic illness. I started this channel to share some of the practical tips and tricks that have helped me live with multiple chronic illnesses over the last 20 years. My primary diagnosis is myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). I also have endometriosis, epilepsy, Hashimoto's thyroiditis and numerous other comorbid conditions, including restless leg syndrome, POTS (postural orthostatic tachycardia syndrome), orthostatic intolerance and problems with my spine.
In my videos I draw on knowledge from my biology degree, but I am not a doctor and my videos do not constitute medical advice. **Please consult a relevant qualified medical professional before making any changes in your treatment.**
Excellent presentation on RLS. I have suffered with RLS since 2018 when I was going through very stressful time in my life. It came back two years later and my RLS is triggered by stress and genetics. I have tried many different treatment options that are more on the natural side. I did try gabapentin. Initially it worked and then I had to keep increasing the dosage till I was up to 700 mg’s. I think I was experiencing augmentation because symptoms became even worse. I still take it occasionally. I have been going to acupuncture for the last year and a half. It does help. I’ve tried various forms of THC, but they were from a local dispensary. It did work in the beginning, but then I had to keep increasing the dosage. My husband passed away a few months ago, so it’s definitely triggered by my stress and grief. I was really glad that you mentioned in your video about medicinal marijuana. I made an appointment to see my doctor to explore this option. I really don’t want to take the other drugs for RLS. I am going to look at some of your other suggestions. Some I’ve already tried and I still use magnesium. I occasionally take gabapentin. I just can’t stay on it consistently because it will stop working. My heart goes out to anyone who suffers with RLS. I so appreciate the time that you put into your education of RLS and treatment options.
@@bineplumpi1249 sorry to hear it didn't work out for you, but at least you were able to work out that it was making your symptoms worse. It's important to listen to your body x
I have had Rls For a long time with fibro. At the beginning of the year symptoms started moving up my body. Now i have the same spastic movements in my upper abdomen. Do you have any insight into this?
@@IreneArndt if your RLS is spreading and getting worse, it could be a sign of augmentation (if you're on a dopamine agonist medication) or it could be a sign of a worsening iron deficiency. Best to talk to your doctor. I explain more about these things in my two follow-up videos on RLS, if you're interested. I hope you find some relief x
Thanks for your feedback! I've put out two additional videos on medications for RLS. I'm going to put out a third video talking about my personal experience with meds. I was on Lyrica for a while and it made me put on so much weight! So I know how you feel x
I have always had it. V Caused me so much suffering over the years i would go as far to say that the lack of sleep was a direct cause of bad decisions and costing me a better education better jobs .even relationshops . Self medicating when at witts end . Now just turning 60 its became a monster ive been to so many drs tried the medications.the couple that actually worked only lasted short time before turning on me making them unbearable at new levels lasting 3 or 4 days with out any relief to the point i was ready to end it but i couldnt think long enough to carry out anything im suffering now no sleep between 11pm untill 9 am usally sleep after 9am but sometimes if i dont get up and get busy doing something i atill will lay there tryi g to fall askeep . My life was robbed the drs. Just never have helped
That sounds awful!! I'm so sorry to hear how hard it's been for you. Yeah, RLS is no joke. It can take a huge toll on your life. Have your doctors talked about trying opioids? They are now the recommended choice for augmented and treatment-resistant RLS. I talk about them more in my follow-up videos on RLS medications, if you're interested.
I take carbidopa/levidopa. It is the only thing that has helped. But I think maybe I have augmentation now. I'm almost 87. Have other issues. It's all very discouraging.
Fabulous breadown of the available meds and as someone that is still migrating away from the brutal effects of augmentation I can say that you are spot-on in your advice of titrating slowly. I'm about 9 months in and while it's going reasonably well it has also been agonizing at times.If you are suffering from RLS I highly recommend watching these videos.
I will try these tonight. My dr actually said just 10:49 take 2 prescription meds! I am so OVER the medical profession! I AM taking L-Theanine, Mag Threonate, Mag Taurine, 5HTP w Ashwaganda. Much happier taking natural path vs pharmaceuticals!
To control it naturally: magnesium helps a lot, so does controlling your blood sugar. Oregon grapefruit with meals helps a lot and so does doing a keto diet. Vitamin B may help you burn up carbs faster.
One of the worst things about the medicines is after time you cannot sleep if you don’t take your meds that night. I also use medical Marijuana (legal in Illinois), Indica, with better relief than my meds.
Glad to hear the medical marijuana helps you. Yeah, it sucks to be dependent on your medications, but I suppose it's better than battling the illness itself.
This is is most informative session I have heard. As a RLS sufferer for 40 years I have had symptoms during the daytime and even rarely in the morning.
This video showed up for me as I often watch reviews of pre workout drinks and PEA is in some to elevate mood and apparently reduce pain for harder workouts. Many claim it makes them very happy. I'm sure reducing chronic pain increases mood but curious if you felt happier on this and more focused?
That's interesting! I haven't noticed a difference in my mood, but it's hard to tell for sure. I've heard that some anti-inflammatory substances can help with depression by reducing inflammation in the brain, so perhaps PEA is similar?
@@chronicjillness332 Maybe. This week adding home made yogurt to the mix. Apparently saurkraut has lactic acid in it just like apple cider vinegar which is compound that supposedly reduces post meal glucose levels so going to be eating that as well. Good luck on your wellness can't imagine feeling so bad it would impact ability to enjoy your kids. God bless! I would try Dr Yu's niacin plus sauna detox. Years ago I had vertigo come out of nowhere and it was debilitating went to many Dr's and NONE could help me so got blood tests read it myself saw elevated mercury levels which initially I got rid of through IV chelation but cost + time was prohibitive so learned of niacin and sauna and used that to get all the mercury out it worked never felt it again. Our bodies store heavy metals and toxins in our fat cells and this busts them open and then we can get rid of sweating them out over time takes 2-6 weeks. This might help you and others not to mention infrared penetrates an inch or two inside body and I find it also heals muscles after heavy lifting so should also heal non lifters as well!
Rolling eyes really works for me. I imagine I am rolling my eyes when they are closed around a clock. I make sure to follow the circle. make a circle with my eyes Sometimes I loose my focus but it works
I'm not sure honestly. It was just a cheap one from Target I think. But any similar water bottle should do. It just needs to have a built in straw within it, so you don't have to lift the bottle all the way up to have a drink.
Mate, thanks for the background work you have done putting this stuff together. I'm not sure if TENS treatment has been covered for RLS? I've had some recent success with it. Now experimenting with kinesiology tape. Bilateral knee replacement some weeks ago. Minor RLS prior...one panadol osteo before bed would see it off. Now, full blown RLS all night. Don't know if nerve damage from surgery or the prescribed opioids. Also on meds for ME and Fibromyalgia...plaquenil, lyrica and sertraline. Too much going on at once!
Thanks Chris. Yeah it's tough managing multiple medical issues and many medications. I hope you get relief from your RLS. TENS sounds interesting. I haven't heard of it being used for RLS before, but it's worth a shot. I've got a tens machine lying around somewhere, I might give it a go.
@@chronicjillness332 G'day Jill, There is definitely something going on with the TENS as I found last night. Previous modest results had pad placed behind and below knee, the other on top of the foot. Trying to get the current to flow diagonally through the tissue. But the big one was a pad either side of the calf slightly below half way. The 'felt' application was very different in each leg... don't know what that means. Resulted in RLS confined to just above ankle in left leg and none in the right for most of the night. Hardly conclusive but worth persevering with. Regards C.
I like the taste of it. Yeah, I was about to say mine says to take two teaspoons. It works great for me. My diet isn't terrible and I try to eat sardines, nuts, salad if it's on sale, lots of eggs, tons of water, protein bars, protein dairy snacks etc. I've been in chronic pain for years but I found if I don't push through them I seize up and that's no life. Sending spoons ❤❤❤❤
Hmmm, I had never heard of kratom until your comment. At a glance, it may well help, but it has other dangers associated with it and is illegal in many countries, so using it for RLS is risky. Still, it would be good to see some clinical trials to find out if it's an effective and safe treatment for RLS or other conditions.
Haha yeah it's not for everyone. I could mix it into something to make it taste nicer, but I just find it easier to skull it really fast then wash the taste out with something nicer.
I've tried almost everything. The pramipexole no longer helps. It used to be just my left ankle/calf, started when I was about 11. But now I get it in both legs, hips and sometimes my arms. I'm about to ask my Dr for medical marijuana, but I'm pretty certain here in Ireland it won't be prescribed. Tried tonic water, exercise, massage, magnesium, magnesium oil, hot baths, cold plunge, saunas, infrared light, and nothing works. I'm 60 now and it's so bad that it often goes on till 5am. It's soul destroying. 😢
That's absolutely awful :( It sounds like your RLS has been augmented by the pramipexole, in which case your doctor should have switched you to a different med by now. I think my latest video, the one on medications for restless legs syndrome, would be helpful for you. It explains why staying on some medications can make RLS worse, and what your other options are. I hope you get some relief soon x
very informative..Im a long time insomniac and only just now getting to feel like im getting there . ill try these techniques tonight. ive also tried counting backwards from 100 but spelling each word backwards...restless legs i find magnesium and iron tablets helped ..as well as a natural sleep tea..believe me when i say i have had EVERY sleeping pill to no avail..they are awful things some of them..thanks for the video.
Ughh, insomnia is terrible, isn't it. I hope my techniques can help. I'm practically immune to sedatives too, but there's something I've been doing lately that has really helped me sleep: As soon as I get out of bed in the morning, I go outside into the daylight. I take my coffee and phone with me and just sit there for 5-10 minutes to let some natural light into my eyes. It needs to be outside, not through a window if at all possible, and not while wearing sunglasses. This small thing has made a huge difference. I fall asleep more quickly and easily and generally don't wake during the night. I hope it can help x
Thank you for this incredibly insightful video, Jill. I don't suffer from RLS myself, but am really grateful to better understand the condition and the implications of trying to medicate for it.
Thanks Lisa. I'm glad my video could increase awareness of this condition and that caring people like yourself want to understand it better, even though you don't suffer from it yourself x
I was using magnesium gel on my calves at night before going to bed. My doctor recommended I try Arnica gel instead. I just started it so I can't tell if it's going to do the trick or not but so far it's working! I'm sleeping better and my legs feel like I'm wearing compression stockings.
Wow - very very impressive. I have spent countless hours researching RLS. I have also suffered through misinformation and lack of knowledge from otherwise competent physicians. It took me years to get to my current understanding and knowledge level. You are to be commended for the amount of very accurate information that you squeezed into this presentation. Biggest challenge is to find physicians and facilities that will follow this roadmap.
Thank you for the kind words! I'm glad you found my video informative. I hope you've found some relief after the years of not getting proper treatment x
Hello Jill, Thank-you for your posting. I am 63 and have delt with RLS since my early teens. I have augmented on DAs and only lasted 30 days on Gabapentin. I was finally able to get an Rx for Codeine about 4 years ago (50MG) and not looked back. It has transformed my life. my dosage has not changed. I can tell my RLS has increased in severity through the years. The one question I have not been able to get an answer for is: will it continue to get worse until I die? Which is a horrible thought. Thanks for the info, your an angel !!!!!
Hi Craig, I'm so glad to hear the codeine has helped you so much. About your question... RLS does tend to get more severe as we age due to the downregulation of D2 receptors, but from what I have read, it might not be a constant or severe worsening. It may just hit a plateau, at which point your codeine dosage may need to be increased. Try not to worry about it. Just keep up the exercise, keep your iron high and work on things that promote good quality sleep x
Thank you Jill, very helpful, will listen when I need a reminder and to all your videos. Had CF since 27yrs old, 65 now. All you say is true. Unfortunately, got Covid and have been set back, so interesting to see the research being done on that.💖
Oh gosh, that's such a long time. You're a champion for surviving it this long. I'm sorry to hear covid has set you back. I've heard that covid (or other viruses) can cause ME/CFS to flare up, but as you say, more research is finally being done, so hopefully we'll get new insight and treatment options soon x
I would add as a coping mechanism for avoiding despair to focus attention on what we are able to do. Right now, I am able to stand. Right now I am able to hug someone I love. Right now I am able to look out my window and appreciate the beautiful speing day. Right now I am able to feed myself, or get dressed, or wash my dishes. Right now I am able to give advice to a friend so that she feels validated and supported in better caring for herself. We can't do everything but everything we can do matters because we matter!
Acceptance isn't as much my problem as the demands on my time and attention from the world around me because most others fail completely to understand how vital it is that I be allowed to pace myself!! I love to walk. Right now, I can't take a walk, just a nice, leisurely, relaxed and comfortable walk of any distance, even a block is too much. I have not been able to do this for six months. I have no idea when/if I will be able to do this again, but today is today and tomorrow is tomorrow. Perhaps tomorrow will be the day. 🤞🍀🙏
The first of eight neurologists I have seen told me that I had a "Benign Annoying Abnormality." Another said, "I can tell you don't have MS the way I can tell th😮at a cat is a cat and not a dog." My diease is Chronic Neurological Lyme, co-morbid with systemic mold toxicity, mitochondrial dysfunction, and many symptoms of MCAS. I have been progressively ill for thirty years. Thank you so much for this!
Ugh, so much ignorance out there, and from medical professionals who should know better. You're a champion for surviving chronic illness for so many years. I hope you get some improvement x
You have excellently summarised the symptoms and remedies of disease . This condition needs management involving all medication exercise diet and tools of massage .Vey nice and helpful.Regads
