Hi! 👋 I'm new here. I have Restless Legs Syndrome as well as a list of other chronic illnesses but I'm a blessed person in a lot of ways.

[Hollygreen]

I have Restless Legs Syndrome and cptsd and Fibromyalgia and chronic fatigue and stomach conditions and depression and anxiety and hyperhidrosis and I've survived FSA and I'm a happy traditional Catholic convert and I'm happily married if he can still stand living with such a poorly person 🙂and I used to be a landscape and portrait painter and an animal rescuer. Please say hi if you like. 👋

[Joolsg]

Welcome Hollygreen.If your RLS is not controlled, could you tell us what meds you are taking now. Looking at your bio, it looks like you are taking venlafaxine and Pramipexole.

All newcomers to the site are advised to read the RLS-UK website.

Pramipexole is no longer prescribed by experts for RLS as it actually worsens the symptoms. And anti depressants like venlafaxine trigger RLS.

The advice now is

1. Replace all trigger meds.

2 Get full panel iron blood tests and raise serum ferritin above 200ųg.

3. If 1& 2 don't help, start pregabalin or gabapentin.

4. If 3 doesn't work- start low dose opioids.

And if you are on dopamine agonists like Pramipexole- reduce them very slowly by following the withdrawal schedule under 'useful resources' on the RLS-UK website.

Happy Christmas.

[Hollygreen in reply to Joolsg]

Hi. Wow. Thank you. Will do this via my GP. Merry Christmas. Hollygreen

[Joolsg in reply to Hollygreen]

Ask your GP to read RLS-UK website and the latest research as set out in.the Mayo Clinic Algorithm and the AASM guidance.Sadly, RLS is not taught at ANY stage in medical training in the UK and the NHS & NICE guidance is about 10 years behind best practice. So your GP may know zero about RLS.

But even the outdated NHS and NICE guidance do advise raising serum ferritin above 75ųg and that antidepressants like venlafaxine worsen symptoms.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

I will get back to you in the morning because I see a number of things that can make RLS worse on your profile and can provide some substitutes that are safe.

[Hollygreen in reply to SueJohnson]

Hi. That's great. Please do. Merry Christmas. From Hollygreen

[SueJohnson in reply to SueJohnson]

I assume you are taking pramipexole since that is on your profile. And I also assume your RLS is not controlled. You may be suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

Even if you are not suffering from augmentation now, up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation.

So I strongly suggest you come off it.

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole reduce by half of a .088 [.125] tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your tramadol temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further on the best iron tablets to take and how to take it.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

Venlafaxine is a SNRI anti depressant that makes RLS worse for many, I would ask for Wellbutrin or trazodone as they are safe for RLS.

[Hollygreen in reply to SueJohnson]

Wowee! Brilliant! Sue Johnson. You're so genuine and informative. OK. It's 26th December. I'll phone the GP. I normally have very good prescription and listening and prescription help from the GP surgery pharmacist called Mr Z. I'll ask him. I'll print your advice. I think my agony last night was also connected to it being 25th December and I have CPTSD. Early life harm physically and emotionally over all days til I went no contact with family of origin last year. 60 years of that being the chosen scapegoat of my family and extended family. This and that my moth said she used to have twitchy legs. So. Onwards and upwards 😃

[SueJohnson in reply to Hollygreen]

Sounds like you inherited your RLS. I'm so sorry about your childhood.

[Hollygreen in reply to SueJohnson]

PS Sue, please let me know if you've read Claire here and her something morphine success in RLS. Kind regards from Hollygreen

[SueJohnson in reply to Hollygreen]

I read everything on the forum.

Low dose opioids are your option if gabapentin or pregabalin don't work. They are excellent at controlling RLS but they can be hard to get in the UK as they are red listed in many places. You would first have to see a neurologist to have him/her recommend it to your GP and many GPs won't prescribe it even if it is not red listed in your area. And there is also the stigma effect for friends who may not understand that you won't get addicted taking it for RLS. Also some of the side effects of opioids can be hard to live with.

[amrob123 in reply to Hollygreen]

@Hollygreen, do you mean @Claire_lc and her success with buprenorphine?

[Hollygreen in reply to amrob123]

Yes. 😊

[Joolsg in reply to Hollygreen]

Many of us in the UK are RLS free on Buprenorphine. But it's almost impossible to get because knowledge is so poor here.First you would have to get off dopamine agonists, raise your serum ferritin and try gabapentin or pregabalin.

Only if they do not work would you qualify for opioids.

Read any post headed 'Buprenorphine'.

[Laineypl]

What a Great positive attitude you have 👏

[Hollygreen in reply to Laineypl]

Hi Laineypl thank you for your kind words. Hollygreen in Yorkshire

[Pippins2 in reply to Hollygreen]

Hi I am in South Yorkshire welcome to the forum

[Mipilimi]

Happy Holidays dear Forum friends🎄❤️🎄

[SueJohnson in reply to Mipilimi]

And happy holidays to you too!

[bookish]

Hi Hollygreen and welcome from Lancashire! Some of your symptoms and conditions could well be partly vit B12 deficiency/metabolism related. If possible, ask your GP for a full blood count as well as serum B12 and serum folate (assuming that you are not already supplementing or getting B12 injections). Always ask for a copy of your results so you can keep and track over time. You may find this interesting pmc.ncbi.nlm.nih.gov/articl... Best wishes

[Hollygreen in reply to bookish]

Dear Bookish, Oh, thank you. I'll look into it. It's kind of you. Maybe when they reopen after today. 27th tomorrow.My main physical illnesses are all part of the fib syndrome which has many chronic conditions in its package 🙂

[4inthemorning]

Thanks for your post, I am sorry that you have so much going on, but I can also empathize as I had similar going on most of life. When I see CPTSD in your post I feel compelled to share my learning of healing from complex childhood PTSD as an adult and the impact it’s had on my restless leg and a number of other physical maladies.

As you probably know, it’s well understood now that trauma is stored in the body, as well as in the mind, and until you can get it released from the body all of the conditions you list can only be treated with modalities that are simply helping you cope, but not healing. See the book “ the body keeps the score” which is the bible for modern trauma treatment that includes healing the body.

RLS is diagnosed in 50 and 60% of trauma survivors, dependingon the time in life that the traumas happened. My experience with RLS gives me a clear understanding of this connection. Search on the web will bring up all kinds of papers and studies on this connection.

I spent the majority of my life living in reaction to this undiagnosed and buried multiple trauma history as a child and as a teenager. Spending years on talk therapy couch never touched it until I started psychedelic therapy treatment where it all came pouring out. In body, memory and sensations memory, but not actually reliving the terrible events.

While psychedelics have been well known to treat all kinds of trauma related mental health problems, it’s only recently that the psychedelic world now has modalities that are focused on releasing the trauma from your body. Release it from the body and in my experience, and many other suffers, and the RLS recedes and then goes away altogether. The one I’ve worked with is PSIP, look it up on the web it’s incredibly effective.

In my experience, I’m fairly certain that RLS is a result of a very heightened nervous system state and it’s just one of many physical body maladies that are created as a result.

Yes there are a number of strategies that seem to work for RLS but I view all of them from diet change to drugs to other alternative treatments as ways to cope, but not healing the main problem of why the nervous system is so heightened and aroused all the time.

Just my two cents, happy to provide further if this interests you.

[Hollygreen in reply to 4inthemorning]

Dear 4inthemorning. Thank you for your kind reply. The major thing that I don't understand is :I was chosen, one way or another, to be the childhood family scapegoat all my life and I've always had fear and apprehension about my early life people but, why, once, after 60 years of having them in my life, they seemed to successfully be rid of me, although it is made to appear that I got rid of them, do I bec almost housebound with several chronic illnesses?

Why is it that once the poison is out of my life, I become riddled with chronic illnesses such as f and stomach problems etc...? Does anyone know why the body or at least my body, reacts so profoundly?

[4inthemorning in reply to Hollygreen]

your story is not any different than any other CPTSD survivors. It’s always been amazing to me. How similar my story is with that I talk to or read about .

It’s a long story, but essentially the amygdala goes into to flight, flight, or freeze mode and the subconscious takes over and traumatic memories, and yes, even emotional abuse is processed the same way as physical/sexual abuse, are then manifested and stored in the body. And it’s impossible to free your mind and body from those earlier events with endless talk therapy, CBT, pharmapsychological drugs, etc. as all they do is help you cope and in the case of the drugs makes things way worse. I spent 15 years in talk therapy and it never uncovered this deeply buried trauma, and that experience is not unusual from others with this kind of complex trauma. And even after it’s uncovered, talk therapy is not equipped to deal with trauma. Most psychologist were not trained trauma informed treatment because it’s so recently understood.

This is why we are so fortunate as a global society to live in a time when the mechanisms of trauma is becoming understood now and the use of psychedelic therapy is one of the main healing mechanisms that releases it from the body and the mind. Yes this part of the mental health world is still learning, but the currently treatments available are so successful.

I’m in the US and there are resources here for this type of treatment now but I think in the UK it’s not as far along. But in the Netherlands there’s all kinds of resources for current, effective trauma healing.

Again, if you do some research online for psychedelic therapy, you’ll find endless amounts of information especially around CPTSD.

BTW I am also in my 60s and only uncovered this four years ago, and started working on it in the last two years (after wasting time with CBT) with trauma professionals. It was at first startling that I was doing this work at this point in my life, but the progressive release from the various traumas earlier in life has been astounding. I’m finally getting to live the life I was meant to live with a nervous system that’s getting less and less on high alert and more relaxed all the time. And my physical symptoms, including RLS have either greatly diminished or gone altogether.

I still have mild symptoms of RLS, but as I said, previously, the history here with this type of trauma treatment is that most patients stop having RLS altogether.

A good starter resource for CPTSD survivors is the foundation link below both for information and for support groups and for just learning about how what you’re dealing with is difficult, terrible, but not abnormal for this diagnosis.

cptsdfoundation.org/