Stress related RLS symptoms-sweating and freezing-less is more

[Katzers]

I have been separated from my husband of 15 years for 4 months now, I live on my own at 65 years old. I have had RLS since 2009 after an extremely stressful episode of losing my nursing job of 26 years due to addiction to opiate patch for Trigeminal Neuralgia. I was on Fentynl patch for about 5 years as there was "nothing else" they could do for the TN at that time. I was on up to 100 mics of that at the highest. I fell asleep everywhere and got in trouble at work for this nightmare and was fired. I asked to go to rehab to get off that drug which was the best thing I could have done for my life but I believe my receptors are damaged because of that. Recently my husband said he couldnt take it anymore and wanted a separation/divorce due to my medical problems, he never listened enough to understand my problem when augmenting and having to stop medications he only would belive it was me not taking them properly or abusing the meds which I have never done. Its not fun to abuse RLS meds, it makes it worse Less is better in everything with RLS for me.

I chose less to eat, I chose not to eat ice cream anymore before bed etc. But I sweat on my medications to the point where I become dehydrated and sweat even more and really fall into trouble. The sweating for me is one of the worst symptoms of something, possibly the methadone, but its always been there now its just impossible to stay warm in winter. when i begin to sweat i get really hot then my legs go weak and my bladder fails me. i have no problems with my bladder any other time. i become soaked with sweat then it reverses and i freeze. its making me dehydrate but i must drink cold water that makes me colder then its over and i cant get warm. im having blood tests in june to cover everything they can check so ill see where my iron is, it was low for the first time, so im on flintstone iron cheawables. Ripirinole is now on my allergy list. I had delusions and a black out i was at a dollar store and came home with things i never eat or use. i dont remember coming home but i did notice a huge chunk of grass and corn stalks under the right side of my car. thankfully my car must have warned me i was off the road so beware!

im currently on pregablin 100mg tid, methadone 5 mg bid and the script must say pain not rls.( im sorry but my cap button is broken i dropped my laptop recently it works sometimes) ) also carbadopa-levadopa for the shaking, cholestrol med, med marijuana, (which doesnt work when i have symptoms but does when im stable), and deluxotine 60mg, atorvistatin also. I had the dr order something for stress/anxiety and he ordered ativan. That was a game changer, my sleep was great. I sleep well on it, I felt better on it, so obviously this ativan would not be a staple because i would get used to it etc etc, but i used it as ordered and found some relief, does anyone elses ears ring and head buzz at times? if the symptoms of RLs are going backwards for me, i feel the agitation literally in my brain. this is when i talk to my brain, you have to talk to yourself! also be aware. i broke my knee cap and tore maniscus while in distress and was kicking my legs to make it go away. had surgery and it will never be the same. HOWEver, my symptoms are less without the stress of my unfortunate marriage.

my question is; what causes the heat flashes, diaphoresis or whatever you call it then sudden freezing, and what can be done to control the body symptom. im not diabetic.

[SueJohnson]

I don't have the answer to your question but I do see some things in your post that are concerning. How long have you been off ropinirole or pramipexole? Withdrawal fromthese can last months and can cause some of your symptoms.

Do not take carbadopa-levadopa. It acts like dopamine agonists ropinirole and pramipexole and you could be having withdrawal symptoms from that.

Statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS, however don't take it if you have diabetes and then there is Bezafibrate (Bezalip) if you are not is the US and Fenofibrate (Triglide in the US) which seems safe. Berberine may help if it is mildly elevated. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

Unless you are having RLS symptoms all day only take your pregabalin at night. It is prescribed tid because it is used for neuropathic pain which lasts all day and it is prescribed off label for RLS.

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. This is the first thing a doctor should do. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.

[Joolsg]

Oh Katzers.What a terrible time you have had. Your RLS was triggered by fentantyl withdrawal.

And now your current doctors have you in a terrible state.

You clearly experienced severe augmentation on Ropinirole and Impulse Control Disorder.

Sadly, as you're in the USA- you cannot sue your doctors or drug company because class actions were brought in around 2009 for ICD and warnings put on leaflets.

But now you are on a terrible cocktail of drugs- most of which will cause/trigger or worsen RLS.

Cardopa levodopa hasn't been prescribed for over a decade for RLS. It is the worst dopaminergic drug for causing drug-induced worsening (augmentation). There are safer drugs to control your shaking.

Duloxetine is an anti depressant known to worsen RLS for the overwhelming majority. Trazodone and wellbutrin are safe anti depressants.

Atorvistatin also worsens RLS for most. Ezetimibe seems a safer option.

You need to see a really good RLS doctor.

They will arrange iron infusions if needed and get you off cardopa levidopa and safelt switch you to safe statins and safe anti anxiety meds.

Methadone does cause sweats and the dodgy temperature control COULD be linked to trigeminal neuralgia. Have you had an MRI to rule out MS? I get trigeminal neuralgia with my MS and I cannot control my temperature due to MS. The head shaking also sounds like an MS /neurological symptom.

But in your case it could be the methadone. Methadone causes sweats.

I take a similar med and control sweats by adding low dose pregabalin.

In your case you MUST see a better doctor who will review all your meds and get you off Levodopa and switch you away from duloxetine and the statin.

Tell us where you are and we can recommend an RLS doctor.

[BabyBlue999]

Hello Katzers

I’ve been on Methadone for under a year with no adverse reactions, it allows me to sleep for 5-6 hrs from 1-2hrs a blessing for me. My dr took me off Tramadol 2015 and it was then the RLS began, almost no sleep, i tried everything before this medication

I’m so sorry to read of your health problems, sleep is so important to enable us to live a normal and better life.

I hope you’ll find a solution for your desperate situation. All of us know how distressing RLS is

Love and blessings XX