Living in Anquish

[gammypaula]

I am 51 years old. I cant stay still because of my legs. No sleep, no rest for my mind. I can barely concentrate on what I'mvwriting right now. I go on walks & bikerides everyday which is very hard cuz I have 5 herniated discs. I am taking magnesium tablets, i only drink water for fear of caffeine. I do hot & cold compresses, epsom salt baths ( again very hard to get in ,& out due to my back. I take perixiprolei & nothing is helping. I have recently been feeling like I just want to die. The rest of me is exhausted & but my legs won't stop. I need help! Please tell me something that works.

[Jelbea]

Hi gammypaula. Its good to see you have found this site and you will get so much help and information to set you on the track of improving your condition. First I would say how much I feel for you and your despair and to assure you that things will get sorted out. Many of the folk on this forum are much more expert than I in being able to advise you and you are assured of many replies to your post. Might I just ask one thing. You say you are taking "perixiprolei". Would I be right in thinking this is in fact "Pramipexole"? If so, this might be causing a lot of your distress at present. I will leave it to other more learned members to advise you. It might be a good idea to let us know all medications and dosages you take at present.

In the meantime be assured this is the beginning of sorting out your horrible illness. Take care

[KenBR in reply to Jelbea]

Stay strong jelbea, and so sorry for what you are experiencing.

I am new to this group, but the members are VERY bright and, if you can,

try and read as many back discussions as possible, as a primer.

As for me, my RLS has abated meaningfully, but not stopped.

It has gotten better, and my dread and doom (I sense you know

of which I refer) has abated. I did the following:

1. no alcohol

2. no sugar

3. hardly any complex carbs

4. Vitamin B1

5. Magnesium chloride in liquid form - 100mg in AM, 400mg in PM 2 hrs before bed (in a half glass of water).

6. CBD oil under the tongue, also 2 hours before bed.

7. if I awaken too many times at night I use a few more drops

of CBD oil under my tongue.

Lastly, I am on no meds, in case you were wondering. And I have

begun today to take potassium citrate powder, mixed in water.

Thus far, about 5700mg, split up in 2 doses in AM and PM.

Also, NO PROCESSED FOODS and NO ARTIFICIAL SWEETNERS.

You can try the above mentioned steps, try and try and learn

and experiment. Sincerely hope you get lucky and find some well deserved relief.

[Jelbea in reply to KenBR]

Hi KenBR. Welcome to this forum. glad to hear you have your RLS under control. I think you meant to message Gammypaula instead of me.. If you go back to her message and send your reply through the reply button at the end of her message that should do the trick. Good luck.

[KenBR in reply to Jelbea]

Thnx

[byrnzy4]

I'm so sorry you are in this great difficulty right now. It will get better, we all know that here. I was in agony for a number of months, and now have meds that have it largely under control. It has been a long process. I have a doctor who is knowledgeable about RLS, and I gave him two articles I found on RLS that increased his knowledge. If your doctor is knowledgeable, then she/he will help you get off pramipexole, or any other dopamine agonist you might be on. An opiate drug can help with that. Then - many RLS sufferers take gabapentin. I am on a fairly high dose to manage my RLS - I take that combined with an opiate. My RLS is truly extreme. The reason I suffered so many months is that meds start LOW and go Slow in dosage and type of meds. So every 3-4 weeks I was back at the doctor in tears to ask for something else, something more. REad up on this website, and the RLS Foundation website in the U.S. Tell us where you are?

[nightdancer]

Have you ever tried any other med? The dopamine meds, like pramipexole do NOT work for everyone. They never worked for me, or zillions of other people with RLS, Some can take it and never have a problem. BUT, the one thing we know for sure what works for one person does not necessarily work for the next one. You need to tell your doctor how miserable you are.

[Hidden]

Hello and welcome! I am very sorry to hear that you're having trouble. This is a horrible disease that shouldn't even exist. How long have you been on Pramipexole? Can you tell us the dosage as well? The reason I ask is because Pramipexole can eventually lead to serious problems for some people. It can help at first, but then "backlash", essentially becoming ineffective in a phenomenon called Augmentation. Unfortunately, Augmentation is so common as to warrant it's own post (located under "pinned posts" in the right column).

Please tell your doctor the seriousness of your present condition and don't despair. Pramipexole and other dopamine agonists aren't the only drugs used to treat RLS.

[gammypaula in reply to Hidden]

Thank you....I get anxiety taking any medication. I am currently not taking anything but my asthma inhaler & allergy medicine.

[Hidden]

Just to second Sails, it would help if you confirmed that it is Pramipexole you are taking and what dose and how long you have been taking it.

It would also help if you told which parts of your body you get the RLS in, is it just your legs? WHEN do you get the symptoms?

[Goldy700]

Hi Gammypaula - I am so sorry to hear about the quality of life you are experiencing. There is medical cannabis if drugs are not working for you. It worked for me but I live in Australia and was able to get a medical script. You would probably need THC in the mix to help you sleep and to reduce the sensations.

[MedFreeRLS in reply to Goldy700]

Does the cannabis remove rls symptoms? They are issuing cards in Ohio but I have mixed feelings about going that route. I don't drink or like anything that impairs my mind in any way. Although I was told that medical strains have been developed that can remove symptoms (such as foot pain from Neuropathy) without making the person high. Maybe something can be developed for rls.

[Goldy700 in reply to MedFreeRLS]

No it does make me feel high at all. I take it at bed time and it helps me to sleep. It definitely makes the RLS much less and when I wake up in the morning I feel clear with no symptoms. It might be worth doing a trial and see how you go. Usually your doctor will put you on 1/3rd THC and 2/3 CBD. You would probably start on a low dose and work up to find your effective level. You may need more or less THC according to your symptoms but the psychoactive effect is minimal particularly if you take it at bedtime. Usually only lasts 6 hours. Hope this helps.

[Jumpey]

Sending empathy and support.Have you had your ferritin levels tested.It needs to be around 100 for RL sufferers.x

[KenBR]

Stay strong gammypaula, and so sorry for what you are experiencing.

I am new to this group, but the members are VERY bright and, if you can,

try and read as many back discussions as possible, as a primer.

As for me, my RLS has abated meaningfully, but not stopped.

It has gotten better, and my dread and doom (I sense you know

of which I refer) has abated. I did the following:

1. no alcohol

2. no sugar

3. hardly any complex carbs

4. Vitamin B1

5. Magnesium chloride in liquid form - 100mg in AM, 400mg in PM 2 hrs before bed (in a half glass of water).

6. CBD oil under the tongue, also 2 hours before bed.

7. if I awaken too many times at night I use a few more drops

of CBD oil under my tongue.

Lastly, I am on no meds, in case you were wondering. And I have

begun today to take potassium citrate powder, mixed in water.

Thus far, about 5700mg, split up in 2 doses in AM and PM.

Also, NO PROCESSED FOODS and NO ARTIFICIAL SWEETNERS.

You can try the above mentioned steps, try and try and learn

and experiment. Sincerely hope you get lucky and find some well deserved relief.

[KenBR]

Yes, B1. I read once that part of RLS symptoms "could" be a problem with too much lactic acid in the muscles and B1, in theory, helps with that.

Complex carbs for me, primarily are rice and pasta and bread, and potatoes. Eliminated all of them. Read that they are inflammatories, and also help increase bad gut flora. I now eat fruits and leafy greens. Eggs are fine. Some fish too. This diet approach is all still a work in progress, a lot of fumbling about, trying to square that circle

[MedFreeRLS]

I am 52 and shared the following a few days ago in a different post. If I can help even one person get relief from RLS the way I have it will be worth my time:

I suffered from RLS for years. I tried Ropinerole and other prescription drugs. Then I read about Maeng Da on a RLS forum somewhere. So I ordered an ounce or two from an herbal store located somewhere in upstate NY. I can't recall the name right now. It had the word Velvet in its name. When the Maeng Da arrived it threw it up in the cupboard and didn't even try it. I was so depressed from the RLS, I figured it would just be one more thing that doesn't work. After another month or two of suffering EVERY night, I decided I should at least try it. What did I have to lose?

About 15 minutes later I felt a little bit of relief. I started to think it was all in my head. Just a placebo effect. So I tried it the next night and it was about the same. I tried it a third night and the RLS was absolutely gone! I have taken it every day since. It has been over a year and it still works great. Sometimes I forget to take it and I have to get out of bed to mix a little bit in orange juice. Thankfully it only takes about 5-10 minutes to work. So yes, if I don't take it I get RLS. Somehow the Maeng Da keeps it at bay. It feels like a wall is up in my body and won't let it through. I don't know how else to describe it. Hope this helps someone. It might not work for everyone, but I know it works for me. I absolutely hated my life from about 6pm-6 am. Now I sleep. My wife sleeps better too. I never realized how much I was affecting her sleep by my constant leg movement and periodic moaning

[KenBR in reply to MedFreeRLS]

Excellent! Good for you. Would you mind naming the exact brand, and title of what you are taking. I found a few different Maeng Da online. Want to make sure I try the correct one. Thanks!

[MedFreeRLS in reply to KenBR]

Its just called green maeng da. There are white, and red strains too. Kratom Spot is one place to get it. I have no idea how or why this keeps my rls away but it does. I mix it with orange juice. 1/4 to 1/2 teaspoon in 6-8 ounces of juice. I read that the acid in the orange juice helps activate it. The powder doesn't mix in water very well.

[KenBR in reply to MedFreeRLS]

Thanks very much!!

[KenBR]

[Hidden]

Hi, are you still there? It seems your post has been taken over, but we haven’t forgotten about you. How are you feeling?

[gammypaula in reply to Hidden]

Sry, didn't reply directly to you by accident but commeted below your comment. Thank you for caring!! Still living in anquish 😞. I'm sure itvwill take a while to figure this out but for now ...just soaking all day everyday when needed.

[Hidden in reply to gammypaula]

You’re welcome! 🙂

I’m so sorry you’re in a bad place. Please tell your doctor this. You shouldn’t have to suffer. Although painful, good for you for getting exercise! I didn’t know there was such a thing as an inflatable hot tub! I know what you mean about living in the water. Remember the thing about Augmentation I told you about? Well, I went through that on Pramipexole a few years ago and all I wanted to do at that time was soak in the hot tub at our nearby pool. I would encourage you to read up about Augmentation since it sounds like that might be where you’re at (unfortunately, so I’m really sorry). Did your prescribing doctor ever warn you about Augmentation? Mine never did. My legs just started going nuts one day; it scared the bejesus out of me.

In case you’re wondering how long it can take for Augmentation to set in (if it does), it varies by a lot. I enjoyed Pramipexole for four years before I augmented on it.

[gammypaula]

Thank you...I don't mind the post being taken over...I get to learn that way. Anyway, all I'm doing is taking baths like every 2 hrs. I sleep after siaking until the next occurance. I ordered an inflatable hot tub. I know I can't live in the water but until I find something that'll work for me without giving me panick or anxiety, its what I'll continue to do.

[scully134]

I am on the Neupro patch and getting tremendous relief. It is a 24hr patch for Parkinson's and RLS. I'm just on the 2mg (lowest dosage) and I'm movement free all day and night.

[Hidden in reply to scully134]

Hi scully, the lowest dose of the patch is just 1mgs, then you have the 2mgs and then the highest dose for RLS 3mgs. Glad its working well for you.