At my breaking point.

[Bobbert]

Hi all.I have had RLS for about 5 years since I was about 35 .Since the initial onset I have lived trough a few life events(not related to RLS) that have left me divorced and alone. My life currently consists of going to work(a work that I enjoy doing) and being at home.This is pretty much all I have going for me currently but as of a few months ago RLS has really made it difficult for me to do even that much.When I first started experiencing the symptoms a doctor prescribed me gabapentin. It was doing a good job up until recently before symptoms' severity grew drastically.After that happened I went to that same doctor and he upped my dosage which has in turn helped the drug bring me the same amount as relief as before my symptoms worsened.This situation promted me to look up how other people were dealing with the disease in case my symptoms worsened again. I used to take solace in the thought that there are many others(from what I have read on the internet) with this same condition and if they are managing to live their life somewhat normally then there must be some sort of way to improve my situation but what I found on different forums left me disillusioned . Every single post was filled with tales of how people's medications aren't working and how their lives are falling apart.I may not be living a dream but I wish for my life not to devolve any more than this and so my last ounce of hope for accomplishing this has brought me here in order to ask if everyone with RLS is destined to such a fate and if it is so then why isn't there a better solution to the problem?

[Rustsmith]

Bobbert, don't let all those tales of woe get to you. There are many of us who have sufficient control of our RLS to be able to carve out a good life. The problem with many of those tales that you have seen elsewhere is that a very large numbes of doctor don't know how to provide proper treatment for their patients. They start them out on a dopamine agonist (Mirapex or Requip), don't check their iron levels and then when the patient complains that the med isn't working anymore, the doc increases the dose. With dopamine agonists, this results in an increasing spiral of ever increasing dose and decreasing time between increases. This continues until the dose is too high and the doctor is then at a loss for what to do and the patient faces the severe challenge of getting off of the dopamine agonist without the help of their doctor.

In your case, your doctor started you off with gabapentin, which is a med that isn't susceptible to the same problems as the dopamine meds. In fact, you are fortunate on several counts. First, your doctor knew enough to start with gabapentin and second, you are part of the ~65% of patients that it works for. But, did your doctor do blood work to check your iron levels, including ferritin. If you are low, it is very possible that treating low iron with an oral iron supplement or an iron IV treatment would completely resolve your problems.

But, even if you have good iron levels and the severity of your RLS increases again, there are a number of treatments available and a number of research projects looking at the base cause of RLS as well as possible new treatments. The future isn't bleak, the long term outlook is actually rather good for someone of your age.

So, rather than worry about your RLS, start concentrating on rebuilding your life beyond your job (which it is very fortunate is something that you love to do).

[ViewsAskew]

Just wanted to saw that these forums are primarily for those of us who did NOT get the help we needed. All of the ones that did? They stopped posting. And there are WAY more of them than there are of those of us who are still on our journey. WAY more.

[stjohnh]

I agree with Ann and Steve:
1. Your doc used the right med to start with.
2. Be sure you get your iron levels (ferritin) checked and find out the actual number of the result, not just "normal" because RLS patients usually need more iron than "normal."
3. User forums like this generally attract people who are having trouble. The folks with mild RLS that don't need treatment, and folks with more severe RLS that are having good results from their treatment do not post much on these types of forums.

[Polar Bear]

Just to clarify. as Holland has stated above """ Be sure you get your iron levels (ferritin) checked and find out the actual number of the result, not just "normal" because RLS patients usually need more iron than "normal."""""
A Ferritin Serum level of say... 20... may be considered normal. For a sufferer of RLS its good to have a level at 100+.

[Bobbert]

Bobbert, don't let all those tales of woe get to you. There are many of us who have sufficient control of our RLS to be able to carve out a good life. The problem with many of those tales that you have seen elsewhere is that a very large numbes of doctor don't know how to provide proper treatment for their patients. They start them out on a dopamine agonist (Mirapex or Requip), don't check their iron levels and then when the patient complains that the med isn't working anymore, the doc increases the dose. With dopamine agonists, this results in an increasing spiral of ever increasing dose and decreasing time between increases. This continues until the dose is too high and the doctor is then at a loss for what to do and the patient faces the severe challenge of getting off of the dopamine agonist without the help of their doctor.

In your case, your doctor started you off with gabapentin, which is a med that isn't susceptible to the same problems as the dopamine meds. In fact, you are fortunate on several counts. First, your doctor knew enough to start with gabapentin and second, you are part of the ~65% of patients that it works for. But, did your doctor do blood work to check your iron levels, including ferritin. If you are low, it is very possible that treating low iron with an oral iron supplement or an iron IV treatment would completely resolve your problems.

But, even if you have good iron levels and the severity of your RLS increases again, there are a number of treatments available and a number of research projects looking at the base cause of RLS as well as possible new treatments. The future isn't bleak, the long term outlook is actually rather good for someone of your age.

So, rather than worry about your RLS, start concentrating on rebuilding your life beyond your job (which it is very fortunate is something that you love to do).

Thanks for the clarification. It really made me regain composure. I haven't checked my iron levels but I will try and do it ASAP.

[Bobbert]

Just wanted to saw that these forums are primarily for those of us who did NOT get the help we needed. All of the ones that did? They stopped posting. And there are WAY more of them than there are of those of us who are still on our journey. WAY more.

That really gets my hopes up.

[Bobbert]

Just to clarify. as Holland has stated above """ Be sure you get your iron levels (ferritin) checked and find out the actual number of the result, not just "normal" because RLS patients usually need more iron than "normal."""""
A Ferritin Serum level of say... 20... may be considered normal. For a sufferer of RLS its good to have a level at 100+.

Will get it checked out and will try to implement your advice ASAP.

[jul2873]

Hi Bobbert,

I'm someone who is relatively happy with the way things are going with my RLS, which I've had for at least 40 years. It didn't get severe until about 11 years ago. At that time I went to a neurologist who did lots of tests (MRI, etc.) to see if the RLS could be secondary to another condition. It's not. Then he prescribed a DA, but by then I had discovered this forum, and was afraid to take one. So I kept doing research, tried a few other homeopathic meds, and eventually discovered kratom. It worked well until about two years ago. I went to another neurologist who looked through my record and discovered the low ferritin. He prescribed infusions, which really helped. And now, with the kratom, is enough.

But last winter I had a TIA (a small stroke) and so had to start seeing a neurologist, and vascular surgeon, for heart stuff, and for high cholesterol. The RLS would come up for discussion, and my Primary Care at the time wanted me off the kratom, and prescribed Lyrica, which I think is Pregabalin (?). She also wanted a sleep study. I tried the Lyrica for a month, but it didn't do much for the RLS (I was still needing kratom) and it was making me feel sleepy and kind of depressed in the morning. So then she wanted me on zoloft, which made the RLS worse. I tapered off both the zoloft and the Lyrica, which made her unhappy. She wrote in my record that I was "very, very non-compliant." And she told me I had an "addictive personality" since I wouldn't give up the kratom.

So now, I have a new Primary Care who I like a lot. She really listens to me, and believes me. The depression and sleepiness is pretty much gone, although it took a month after I got off the Lyrica.

So this is where I am: I'm 78 years old, and refuse to worry about using kratom long term. It still works fine, and, since the MRI they gave me in the ER after the TIA showed that this was my third little stroke, I figure I'll be lucky to need anything ten years from now. As far as sleeping, I refuse to worry about it. I listen to audio books I really like, and don't mind getting up two or three times in the night to walk for a few minutes, and take more kratom. Life is good now. I have six wonderful grandchildren and am determined to enjoy them, and the rest of my life. Luckily I'm retired, and so can nap when I want to. I am doing what doctors are recommending for stroke prevention (statins, etc.) but refuse to worry about their recommendations for RLS. The PCP that called me "non-compliant" also set me up for a sleep study, but I just cancelled it. Don't know if I'll bother with it or not.