Feeling lost

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spflo033
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Feeling lost

Post by spflo033 »

I'm new to this board and I know no one knows me here but I feel that I have no one to talk to that understands what I'm going through. My RLS has been so severe lately and I feel like it's not getting any better. I figured maybe if I post/vent to you guys it might make me feel a little bit better.

I'm 25yrs old and have had RLS since I was 13. I remember dragging myself to high school after having no sleep and popping 800mg ibuprofens like they were candy just to go to bed. Now I'm older and I just feel like I'm lost. I'm so tired at work that I just stare at my desk. I'm probably zoning out 25% of my work day. My boyfriend has been so supportive but it's so hard for me because I look at him and I know he wants to help but I can see he just doesn't understand. I had a very broken home as a child and saw my mother take shoeboxes full of meds and with my RLS I'm almost forcing myself to not take any pills. I just don't want to be that person that HAS to take a pill. What am I supposed to do? take a different pill every 6 months for the next 60 years? what is that going to do to my body? So now I smoke weed to suffice the aching. I just hope that I don't get drug tested, I've been smoking so long that I know there's no way I'd pass one. The mirapex doesn't always work and when it does I feel like I've been hit by a freight train in the morning, the same goes for Requip. I also suffer from hypoglycemia and fibrocystic breast disease. Between my FCBD and the RLS, sometimes I don't know how I even fall asleep.

On a good note I'm going for blood work this week. my doctor wants to check my iron levels along with a few other things. I'm also going to try an acupuncturist on the 8th. I'm hoping that the acupuncture could possibly help with my FCBD. I've also been taking the Magnilife for 2 nights and that's helped a lot but who knows how long that will last. I'm willing to try anything. I feel like I'm losing my livlihood and I don't want to lose my job by either weed or falling behind on my work.

Thanks for letting me vent. I feel better already if you can believe it haha

Aiken
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Post by Aiken »

Welcome. Indeed, no one knew you here. But, now we do. All done! :)

A few thoughts...

First and foremost: While a healthy avoidance of unnecessary pill-taking is a good thing, an unnecessary avoidance of healthy pill-taking is not. You may indeed be someone who has to take a pill every day for the rest of your life. It's not your fault, it's just the cards you've been dealt. If you stay loyal to the neurosis that you developed from watching your mother down shoeboxes full of pills, you may end up doing yourself more harm than good. Worse still, you may find that after years of holding the pendulum all the way to one side, you may suddenly give up and let go, and it'll swing all the way to the other side. (Consider what catholic schoolgirls do when they get out of school.) Work out your feelings about your mother and about medication, so that you can handle these things with a clear head, with the pendulum sitting stably right in the middle.

Personally, I think if you can accept the legal and social risk that comes with marijuana, you might actually have one of the better treatments. I gather it works quickly, lasts a long time, and there's so little actual smoking in a few puffs that I can't imagine it's all that hard on your lungs. (I don't know, but it sure seems that way to me.) I'm not able to take the risk, but if I were, I would absolutely give it a go. I hate that my pills take a while to work, and sometimes don't work as well if I ate the wrong thing too soon before. It really pisses me off that marijuana is illegal, while alcohol, which can very easily ruin your health, your life, your kids' lives, your spouse's life, the other driver's life, etc., is available with glitzy labels in the supermarket. You don't even need a damned prescription, and the stuff is just as potent as Xanax.

By the way, don't get too bogged down in concern about the current state of treatment. It hasn't been that long since no doctor took RLS seriously. I think it was only just in 2006 or 2007 that someone found actual physical evidence of RLS. Doctors and researchers are still finding their sea legs, in my opinion. But look how far other disease treatments have come in the last 10-15 years, and it just seems to go up exponentially. If I had been born 30 years sooner, I might never have seen a viable treatment for my chronic and miserable reflux. My dad never did. I was 25 before I got a good one. Today, though, I pop one pill each morning and I'm just fine. I'm sure we'll see similar progress for RLS some day down the road, and I'm sure it'll be long, long before you're 60 years old. Even if you're still popping a pill, I bet it'll be no more concern to you than brushing your teeth, just a part of the routine, and forgotten once done.

I think that's all I have. One more thing, though, just in case you haven't seen this important detail: When you get your iron tested, make sure it's "ferritin" they test. It's an important distinction, as there are several iron tests and that's the one that makes the difference to some of us with RLS. Also know that the range we need to be in is higher than most people, so if they tell you you just squeaked by, you actually didn't.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

lyndarae
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Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho

Post by lyndarae »

Hello, And welcome to the family. Sorry you have to get to your wits end before you feel like you want to say anything but your welcome here any time.

We are all in the same boat here and we are here for you in the good times and the bad ones. I too watched my mom popping the pills and my dad drink himself to death, not an easy thing to grow up with, or to follow in their foot steps, but I did self medicate until I lost everything imprtant and am now left with the rls to deal with.

I take several different meds to help with the pain I have and the lack of sleep and the rls creepy ctawlies. But I dont abuse them any more and follow my docs orders.

I wish you the best of luck with your blood tests and your doc. Come here any time day or night you have found a place where we all understand what you are saying and feeling , your not alone anymore GOD BLESS~~~~~~~~Lyndarae
You cant be brave if you have only had wonderful things happen to you

ViewsAskew
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Post by ViewsAskew »

Hi SP...just a thought. I remember awhile back, maybe three years, one of our members had hypoglycemia and she posted this link she found between it and RLS. I seem to recall she controlled the RLS with diet.

I just did a search and found the post where she talked about it. http://bb.rls.org/viewtopic.php?t=988&h ... poglycemia

Hope it helps you some.

Because I wasn't aware of anything about FCBD, but I have PCOS (polycystic ovarian syndrome), I did a quick search to see how similar they were in terms of cause and treatment. Similar to PCOS, the FCBD is caused by a hormonal imbalance - makes sense. But, it's a different hormone out of balance.

But, since RLS is often worsened at "that time of the month" we know hormones do affect it, which may mean that people with hormonal imbalances are affected more severely, though I've never heard that.

Diet also affects PCOS as it does FCBD, but again, it's a different diet. The PCOS diet is more closely related to a hypoglycemic diet, which is why I was first interested in how the FCBD affects you.

I imagine you've seen this site, and it may be quackery, but I happened to find it interesting because they mentioned, on the first page, hypoglycemia. Since you also had that, it caught my attention. Is there a link between these two conditions? Anyway, here is the link: http://www.fibrocystic.com/
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SquirmingSusan
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Post by SquirmingSusan »

Hello and welcome to the forum. Sorry you're suffering so much with this disorder.

There are a lot of options for treating RLS, starting with eliminating things that can make it worse. Do you drink caffeinated drinks? I though of that as soon as you mentioned the fibrocystic thing. I have that as well, and I just remembered that was the reason I quit caffeine years ago. Now it only bothers me if I drink caffeine.

I don't know where you live, but in Canada and some states in the US, there is medical marijuana. I've heard it's hard to get a prescription, but it may be worth it since you know it works. Otherwise, it may just be worth the risks if it helps you function. That's up to you to decide.

Alcohol is another thing that can aggravate RLS, as are certain foods and many medications. Some people find that ice cream worsens their RLS. It may help to keep a journal of what you eat and drink and see if there are correlations.

You're already onto getting your ferritin levels checked. They probably are low; my doctor said that most women (who are having monthly cycles) can't maintain the levels of iron in their bodies that can be helpful to RLS.

Be sure and read the stickies at the top of the "New to RLS" section of the message board. There is so much good information there.

I'm glad you found us and introduced yourself, and am glad that you feel better already because you were able to vent. Sometimes just knowing that there are other people who understand goes a long way toward feeling better.
Susan

Neco
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Post by Neco »

Hi,

I'm also 25 and though I've only had RLS since I was around 21, these past few years have been a roller coaster. It's something we all have to deal with and we all have our good days and bad days.

It sucks that you've been through a lot, I can relate to that, but the one thing right now standing between you and better management of your RLS is fear. Fear is a powerful tool, in contrast I chose to be arrogant about my medications and told myself I would never have a problem, but if you dig up most of my forum posts you will see that didn't work out too well for me.

But something to think about is we are all different. I'm an addict because of a personal choice more than anything. Sure they say addiction is a disease and certain people are predisposed to it, but largely it was my choice to decide I didn't want to deal with the world, or my problems, and to try and drown them out.

I'm pretty sure if there are some numbers out there, they would say that although we hear bad things about drugs and addiction every day, it is still largely a minority of the general population that has to deal with it.

If Reqip and Mirapex are not working out for you very well, you have to find other medications.. Unfortunately the other non-narcotics medications can also make you very tired too, but you might also get lucky, who knows?

Pain is a legitimate illness, and painkillers are a legitimate treatment. I've been very fortunate to have a great doctor who has stuck with me and done his best to help me manage my problem... I am also working on getting back into counseling to deal with my stress and hopefully that will have a positive impact on how I handle my meds.. You might want to consider talking to someone too. I've been to shrinks all my life, so maybe it just comes naturally to me, but all these social stigmas about legitimate therapies and medications are really hurting people in our country more than helping.

You should make sure your doctor knows that these medications are not controlling things, and also do your own research. The Mayo Clinic has an excellent algorithm for RLS treatment available online (I know someone around here has a link). You should also be prepared for the possibility your doctor is ill-prepared and unwilling to work outside of the bounds of the "approved" treatments (Requip & Mirapex). Many people have had to sever ties with doctors they've known all their life because they just didn't "get it" and were not helping them enough, or at all. It is an unfortunate reality that many doctors are not educated properly, or don't even recognize RLS as a legitimate illness.

Don't be afraid of pills for the wrong reasons.

Sojourner
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Post by Sojourner »

S, Welcome to the family. Come talk to us more.

M.
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dogeyed
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Post by dogeyed »

Hi Flo,
Since you have a good "drug ethic" in place, you will be less likely to abuse medication. So, I would strongly urge you to see if your doc will give you something mild like Tylenol Codeine #3 to try out. You should find tremendous relief from just one pill of that stuff, and I've been taking the same dose for years now, and I could not make it without the drugs. It doesn't goof you up a lot, you can take it for a long time, sort of like folks take aspirin, and you will feel so much better, plus your relationship and work will vastly improve becuz you won't be so miserable, AND it's legal. It's not a cure-all, but you will be more comfortable. Best wishes.
GG

spflo033
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Post by spflo033 »

thanks everyone for the help. This past week has been a lot better. I've been taking the Magnilife for about a week or two and it's been taking care of things. We'll see how long it works and once it stops I may just have to go back to smoking. It's my best option, it works the quickest and is cheaper than a mirapex prescription LOL. and Susan I'm in NJ so I can't get medical MJ right now. I think they're in talks for it though.

But I think my RLS, hypoglycemia, and FCBD are all tied together somehow. I feel like such a damn mess for only being 25 hahaha. But they're opening up a new gym by me soon so once I get back into the gym I'm going to see how that affects my RLS and everything else. I know there's a certain combination of things I need to do in my life to take care of everything, I just have to figure out all the right pieces.

Neco
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Post by Neco »

Be careful with the gym.. If you work out too hard or overwork your muscles it can throw your RLS into a nasty fit.

spflo033
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Post by spflo033 »

Zach wrote:Be careful with the gym.. If you work out too hard or overwork your muscles it can throw your RLS into a nasty fit.


yeah I just have to find a happy medium

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