Severe RLS Sufferer

[intermk]

I've been suffering from this miserable disease or syndrome for 35 years now. My legs, arms and face are involved. I've tried everything on the market including many prescription meds. What works for me I can't get doctors to prescribe, so the suffering continues unabated. I know what works and what doesn't work and I can tell how serious your RLS is based on what you say works for you.

[YodaDog]

Hi intermk - so sorry you have it so bad. Have you followed all the general advice i.e. iron supplementation or infusion, avoidance of triggers (esp alcohol, caffeine and nicotine, withdrawing off of dopamine agonist drugs if they are causing augmentation, checking that any other meds you take are not known to cause RLS or make it worse etc?

[intermk in reply to YodaDog]

Oh yes, I've done all that years ago. I found that once I was caffeine free that my RLS wasn't any better, even after being off caffeine completely for over a year. Doc tried me on DA drugs but as with most people, they failed me after only 3-4 months. My iron runs a bit high so they don't want to add to that number. Never smoked and don't drink any alcoholic beverages. The only thing that ever helped me was narcotic pain meds. But you can't get those for RLS in my area.

[Madlegs1]

What is it that works for you?

[intermk in reply to Madlegs1]

Only narcotic pain meds work for me but as I noted above, docs refuse to order them for me. Instead I use Kratom and it works perfectly for quite sometime. But I feel that I'm about at the end of it's usefulness. The effective dose (ED) is just about at the toxic dose (TD). And I suspect that the lethal dose (LD), is not far off. So I'm working hard to find a replacement. Going to be seeing some pain clinics and try to get a RX for Ketamine Infusion Therapy. Don't know if it will work for this disease but I'm willing to try. Even if it doesn't relieve RLS symptoms for 2-3 months, it should help with depression.

[Jelbea]

Hi intermk, I don't understand what you mean when you say "I can tell how serious your RLS is based on what you say works for you".

Please explain what you mean.

You sound as if you suffer a great deal as most of us on this forum do and if you have any suggestions we always like to hear them.

[intermk in reply to Jelbea]

It's just that I've had 35 years of experience with this disease and have met many people complaining of the same. Most of us initially think we have the most serious form of RLS with both the arms and legs involved, complete inability to sleep at night and the requirement to use a walker to get around during the day. As I talk to others with a diagnosis of RLS I get reports of what it does to them and I have never met anyone that has it as bad as I do. But that's why I am here. I want to hear from more people to see what the most serious sufferers use to deal with the pain and disability. I've never gotten any help from the typical drugs and routines that help people with mild to moderate RLS. And most of those folks report getting help, at least temporarily, from DA drugs or a cocktail of other drugs. Anyway, I usually guess what a persons severity rating is based on what they tell me their symptoms are and how serious they are, how it affects their lives, etc. They want recommendations from me. For someone that has very serious RLS that controls their entire life; I hate to tell them to ask their doctors for the basic meds that are typically tried on mild to moderate sufferers. You could spend years going through all those meds with nothing more than one disappointment after another. So I tell the most serious sufferers what I have done and what works for me. All that has worked so far is narcotic pain meds. They completely eliminate the pain and disability. Never that involuntary urge to shake your legs or having your arms jerking back and forth and you face with blephorospasms and bruxism. One other thing that helps me is steroids. They don't get rid of the symptoms entirely but they do decrease the amount of pain med I need to take by about 50%. Unfortunately, there are major problems with long term use of steroids so you can't get them for RLS.

[Hidden]

Hi, firstly I'm sorry to hear you're yet another victim of this horrible syndrome.

I'm sure if you give more detail of what exactly you've already tried for your RLS and say what DOES work for you, this forum could help.

There may be things you aren't aware of, which members might be able to tell you.

I don't doubt at all that your RLS is severe, for different reasons, it certainly sounds it.

However, sorry, but I have to challenge some of what you say. Please don't interpret this as attacking you.

I have in the past admittedly made the mistake of assuming that whatever works for you indicates how severe your RLS is.

It sounds intuitive to think that "mild" solutions that work suggests mild RLS. There may be an element of truth in this.

However I don't think this is always or necessarily true.

I came to a realisation recently when another member suggested I only had mild RLS because I only took 600mg gabapentin.

It's true, I currently only experience symptoms occasionally now, lasting no more than a minute or so.

Does this mean I have mild RLS?

OR

Do I have severe RLS that is controlled by gabapentin, AND vitamin B12, vitamin D, magnesium and iron?

If you'd told me I only had mild RLS when I was first diagnosed it would have been extremely difficult to swallow.

There is a RLS severity scale to indicate how severe RLS is. It gives a score for how it is, at a particular time.

I would score low at this time, but when I was first diagnosed it would have been severe and if I were to stop all remedies now, I can only imagine how bad it might quickly become.

So, is my RLS mild or severe?

What any individual chooses to do about their RLS depends on many factors i.e. what they know, whether they seek medical advice or not, what that advice is, what they know about the risks of what they do and whether they have a strong preference for "alternative" remedies at one extreme or "drugs" at the other. Differences in constitution also affect how someone responds to a remedy.

Another factor is person's tolerance of their symptoms and other psychological factors which might alter an individual's perception of what they're prepared to accept or do.

"Mildness", is probably, in amongst the rest, only one factor.

Having gone from chronic insomnia, sleep deprivation, (max 3 hours sleep nightly) and twitching all over, within seconds and any time of day, every day to hardly having any symptoms at all is possibly unusual.

At the moment my RLS may be considered mild, I'm not convinced that this means that I am a "mild" RLS sufferer however.

I've found myself reading posts from people saying they follow a particular lifestyle, diet, exercise etc which requires, it appears, a lot of restrictions and self- discipline. I find myself thinking, they must only have mild RLS then, I need a drug! However, I also now accept I just can't he bothered with all that, I prefer to take a drug.

Finally, if something " works" then, at that time, you do have mild RLS.

As regards your own RLS, as I say, give more detail and I'm sure you'll get some positive suggestions. You may need a combination of things.

[Hidden in reply to Hidden]

I agree with is your RLS mild or severe. I only take the very lowest dose of two meds do I consider my RLS mild because of such low doses. No , my RLS is severe, and has been since it progressed over the last few years. 😊

[intermk in reply to Hidden]

I agree with everything you say. I know that we are all somewhere on the RLS continuum. We all suffer differently and i would never tell anyone whether I think they have mild, moderate or severe RLS. But I let them tell me and as I noted to someone else above, I answer their question, "What should I do?" based on what they tell me their severity is and what they've done to manage the disease to this point.

I have tried well over 20 drugs including the DA's, Gabapentin (up to 1200 mg w/o benefit, Demerol, Dilaudid & Oxycodone (all work to completely eliminate symptoms and allow sleep). Docs have checked my iron regularly and it's on the high side so no augmentation. They had me on a cocktail of Clonopin and Nortriptyline for a long time and that just made me sleep on and off 24/7 while the legs were still kicking and arms painful. They have had me on high levels of calcium which ended up causing a large calcium based kidney stone that had to be surgically removed. They've tried high doses of magnesium to no avail. I've even rubbed in magnesium oil and a mg creme that also had lidocaine but neither has worked in the least. Early on one neurologist suggested I dink a lot of quinine water but this too failed and I did that for almost a year. Ohh, there are many more but I'd have to dig into my medical record to find all the names.

I don't drink alcohol, don't smoke and don't use caffeine but rarely.

[Hidden in reply to intermk]

Whay an awful experience.

It seems you have largely been the victim of medical ignorance. Particularly being given nortriptyline, a tricyclic antideptessant, known to make RLS worse.

The most ignorant appears to be what I think is tonic water, you call quinine water. Quinine was once used fir RLS but to get an effective dose of it from tonic water, you'd have to drink about 5 gallons a day.

If I'm understanding you correctly, Demorol, Dilaudid and Oxycodone do work for you. If that's so, then great you have found a solution.

It does seem that you haven't quite understood what augmentation is.

Your iron is "on the high side so no augmentation".

Augmentation isn't really related to your iron levels at all. Additionally, you don't need a test to know if you have augmentation or not.

Augmentation means a significant worsening of RLS symptoms caused by excessively high dopamine levels. This is caused by taking L Dopa, dopamine agonists or in some cases tramadol.

[intermk in reply to Hidden]

Oh I didn’t know that Nortripyline was known to make RLS worse. They wanted me to try it again just last year and I declined, reminding them it doesn’t help me. But I was tempted to try the larger dose they suggested.

Now I'm glad I didn't.

Yes, yes, tonic water! I was drinking that stuff by the liter and would get up to about 4 L in a day with no help. But a lot of trips to the men’s room. And I seem to recall it had a huge amount of sugar so that was the worst part of it for my health.

And yes, Demorol, Dilaudid and Oxycodone work for me but I have only been able to get that medicine for serious maladies such as huge kidney stones. Even though narcotics are an approved medicine for severe RLS sufferers, I can’t get any from 7 docs so far.

What I use now and have been for the last 4 years is Kratom (which I don't recommend). But it works for me. I'm just getting to the point where the effective dose (ED) is almost to the toxic dose. An ED now makes me dizzy just like THC does.

Regarding iron – I wasn’t using the term “augmentation” as we use it for DA’s no longer working. What I meant was that the doctors don’t want to give me an iron supplement (augment my iron level) with more iron due to other problems that would cause.

[Hidden in reply to intermk]

I see, the other meaning of augmentation.

Perhaps you already know that whether you should get extra iron or not depends on your ferritin level.

50% of RLS sufferers benefit from it being at least 100ng/mL It appears that not many doctors know that, some say it should be at last 50ng/mL. some assume that it's OK if its's "normal" i.e. 12 ng/mL or more.

I doubt if it would do you any harm to take an oral iron supplement. The body has its own way of protecting you from iron overload so it shouldn't cause any problem from that. The other problem is that prescription strength iron supplements can cause gastrointestinal problems. In which case it's better to take an over the counter "gentle iron" supplement.

[intermk in reply to Hidden]

My most recent Ferritin level was 341 ng/ml and max normal range for our lab is 400. My family has a history of hemochromotosis. My brother has both the genes and he requires therapeutic phelbotomy every 3-4 months. I have one of the genes so don't have the excessively high iron but still high normal. I'm not quite sure of the difference between iron and ferritin but is seems like my doctors use equate them for purposes of blood tests. I've never seen an "iron" blood test. Do you know?

[Hidden in reply to intermk]

341ng/mL is great. However it does probably mean that your RLS will probably not benefit from getting it higher so no point in further extra iron.

Obviously, if there is a risk of hemochromotosis, there is a risk that the normal mechanism for limiting iron absoprtion from the gut may fail.

As far as I understand it, iron molecules do not exist on their own in the body. They are "bound" to a protein.

The main (and most vital) function of iron in the body is to enable red blood cells to carry oxygen. In this case, iron is bound up in Haemoglobin.

Iron is also used, to a lesser extent in the brain and RLS is associated with Brain Iron Deficiency. This can occur even in the absence of iron deficiency anaemia (lack of haemoglobin).

Iron has to cross the blood brain barrier and the amount of iron that can be carried across depends on the amount of "stored" iron, not on haemoglobin. Ferritin levels indicate the amount of this stored iron

The transport of iron across the blood brain barrier also depends on another substance, transferrin.

The normal tests that are carried out for haemochromatosis and for iron deficiencey aneamia then, don't really test how much iron is available for the brain.

If ferritin levels are low, that means that there is littlle stored iron available to be transported across the blood brain barrier. This is more significant for someone with a high propensity for RLS.

However, if someone suffers iron deficiency anaemia, because that is more vital than brain iron, stored iron is diverted to haemoglobin, less is available for the brain so that some people with anaemia can get RLS sysmptoms.

That's probably an oversimplification, but I think it's roughly correct.

[Sara_2611]

35 years -phew -you poor soul.

[intermk in reply to Sara_2611]

I'm surprised that I lasted so long. I thought surely it would kill me within just a few years. There were times when I went up to 14 days without sleep either day or night. Often I ended up in emergency rooms because people that saw me jerking thought I was having a grand mal seizure. Being in the ER's is where I learned that narcotic pain meds were the med of choice for me (not necessarily everyone).

[Sara_2611]

-I d like to think RLS wont kill anyone - I notice you mention about you talking about narcotic meds & the importance that it was good for you but not everyone

I use Balneum Cream -again its very good & useful & works fantastically well for me but importantly its not for everyone

[intermk in reply to Sara_2611]

Balneum Cream is also something I had never heard of until now. I just looked it up and read a bit about it and see it's not specifically for RLS but so glad it works for you. That indicates it could work for others. I have tried several creams, the most promising sounding cream is called RLS Cream. It has many ingredients but the two most active are lidocaine and magnesium oil. Some people report getting temporary relief from massaging magnesium oil into their quadricep muscles. I used these frequently, apply the cream hourly but never got any pain relief. I gave away the remaining bottles to others that suffer from RLS and they too report no relief. Now I will suggest they give Balneum Cream a try. Thanks

[Sara_2611 in reply to intermk]

Hi

Dont do that - under any circumstances - if they tried it they may find their skin would react negatively -I only mentioned it because its what works for me -I have to make it clear I was not recommending it for anyone elses use

Please do not recommend it or suggest it to other sufferers -

[intermk in reply to Sara_2611]

Okay, no problem.

[Sara_2611]

Thanks. Sometime ago I was telling someone about it on here & an administrator quite rightly told me not to recommend it to anyone because of any negative reactions on other peoples skins

Thats why in my first message I made it clear that it wasnt for everyone & was just good for me

[intermk in reply to Sara_2611]

I think that RLS sufferers are here to find out what others are doing that seems to help. Just by mentioning a particular modality by name, people are going to try it or at least look into it to see if it might work for them, whether or not it's recommended.

[Sara_2611 in reply to intermk]

thats fine but for the reason I've mentioned I would be extrememly grateful if you would not suggest it to the sufferers I thank you very much & much obliged

[Lapsedrunner in reply to Sara_2611]

Sara_2611

Balneum cream is sold, over the counter, without prescription.

It’s for itchy skin, so I’ve never worked out why it should work for RLS. However if it works for you, great, but you can’t worry about something that anyone can buy!

[Sara_2611 in reply to Lapsedrunner]

Hello there yes I know - with respect & forgive me for saying it -that at least if you did speak to someone about it for them to consider or not to consider -I have backed myself up by making the observations I have made.

Many thanks my dear for your reply