Just wanted to throw this thought out there. Restless Legs, according to what I have read, is not taken very seriously, like so many diseases of unknown origin.
But I am here to witness that RLS is ONE OF THE WORST DISORDERS a person can have. This is because it deprives a person of making a living, it deprives a person of doing much of anything worthwhile, it is not recognized by the general medical community so you have nowhere to turn, it is EXTREMELY PAINFUL, and RLS completely disrupts normal rest and relaxation. Sufferers are forced to move around to make the pain stop, and then when they lay down to rest, they have to get up again, and so it goes, until the only option left is to shoot the legs, so as to put them out of their misery.
This website has been so helpful to me. I have found numerous sources for help, advice, and just plain old good sympathy, where otherwise there is NONE. I mean, I am at the point where I am going to have to file for disability, but since this is not a recognized disorder, I don't imagine I will get the help I so desperately need. Are others finding themselves in a similar predicament? Is help on the way?
I have had RLS for approx. 20 years, and I agree with everything you have said!!! Most people don't understand when you explain what RLS is--in fact they look downright bored when you explain what you have. I even had a co-worker (who I, in fact, supervised) tell me that she didn't care what was wrong with me! You are right when you say the a lot of the medical community doesn't know what RLS is. It always surprises me when a nurse or doctor looks at you with a blank stare and says, "What's that" when you say you have RLS. Luckly I have a good neuro. He actually told me once that a patient told him that if he couldn't get help, he would commit suicide. That sound drastic to some people, but to those of us who have spent countless nights walking the floor, maybe it's understandable!! It's a miserable syndrome to have. It's not terminal, but's it is horrible and I wouldn't wish it on my worst enemy. I have found the right combination of meds for me. I'm doing okay right now. But my meds have to be changed every so often. Hang in there and hopefuly you'll get a good night's sleep once in a while. Doesn't that sound good? Something so simple to so many people. I'm glad you AND I found this site!!!
RLS is only painful in 50% of the patients. I am in your 50%. by the way. Only a few years ago (but still nowadays, too) doctorst thought (and think) that if it is painful it is not RLS.
The way you describe it (and some time it feels) it is torture.
I do not know about disability. My daughter has had fibromyalgia (a severe form) for ten years and it took two years and a lawyer until finally she could get disability for two years when she has to go through the whole rigamarole again. Finally the judge felt sorry for her (the testifying physician expert did not believe in fibromyalgia) and sent her to a psychologist (she is bright and normal), who finally acknowledged that she cannot work (because of very severe pain).
I will try to help you if you let me know what medications you are on if any.
This is Jan. What kind of pain do you experience? I have some pain. It's a kind of deep, deep ache that gets worse and worse if I'm not on the meds I'm on. Is that it? I also have trouble walking first thing in the morning until I'm up for awhile. And it hurts to turn over in bed.
Recently I discovered (and described in boring detail in my thread) that depending on the type of medication I am taking I have two different types of pain. One increases with time as the limbs are immobile (would increase out of bounds if no movement) and go away upon movement of the particular limb. The other is typical nerve pain such as sciatica it is constant in time and tolerable and more noticeable when one moves.
I (and others) would benefit if you would reveal your medications and their effect on your symptoms. If you would rather not publicize you could send me a private message or e-mail me. (I take the confidentiality of medical info very seriously.)
I don't know if the above replies are to me or to someone else, as one of the questions was if my husband was getting a master's and my husband is not getting a master's. We are in our 50s and aren't going to school. But you guys are asking what meds and what pain, so here you go:
As for my meds, I take NOTHING except a tranquilizer, Klonopin, .5 mg daily, which I have been taking that since 1998 for anxiety. I have been in menopause for several years, drinking soymilk every morning for the estrogen and using a natural progesterone hand lotion. Just a month ago, my doc put me on a codeine medicine for my legs until I can get to the neurologist. The codeine numbs up the pain but knocks me out. When I first took it, after some pretty scary hallucinations, I got some sleep, some REAL sleep, and that's when I realized just how much trouble my legs were in, as my bones felt like they had been twisted, my muscles were all wrenched, and, well, I could FEEL all the damage that has been done. The relief I felt was all over my body. You see, when you've been carrying around pain for years, your posture and everything compensates for it, and when that relaxes out, you realize what a mess you've got yourself in.
As for my pain level, it is a wrenching, deep ache in my calves and ankles. It begins as a squeezing in one calf, tightening, until I cannot stand it, and then my leg jerks around. Soon it works its way up into my thigh, and then my other leg starts spazing up. This leg ache is agony. But it is not the kind of cramp pain people get from lack of iron or whatever that is, which quinine supposedly works for. I would rate my leg pain as a 4 in discomfort. I would rate my whole body agony as a 2.
Now, my feet are what actually cause the most pain. I would rate that as a 6 in pain. It is an acute, burning hot, unbearable pain. I can barely walk on them. All these pains begin when I lay down in the afternoon. The only way I can prevent the foot pain is to stay off my feet all day and wear foam pads in my slippers, and EVEN THEN, when I lay down in the afternoon, my calves start their game of tightening up and flailing, I cannot relax, but my feet don't hurt as much. The pain in my feet is more intense when I have been on them for, say, an hour, either going to the grocery store or doing a little work in the yard.
I have considered the possibility that my foot pain is different from my leg pain, and that I need orthotics or some other bandaid. But I think it is insane that even when I wear running shoes with arch support just for an hour out in the yard that my legs seize up and my feet hurt like I've been standing barefoot on cement all day. I see a neurologist tomorrow...
For those of you who have pain with RLS, when did that start? Did you always have pain associated with your RLS or was it something that was an added bonus, later in life?
As a lifer with increasing symptoms, I am hoping that pain never develops with this horrendous disease. All the best,
See above when I wrote about the two different types of pain. I think the motion-dependent pain started at about the same time as paresthesia. The nerve pain before that.
Even though the pain can be severe, moving the limbs make it go away. I think the pain is easier to tolerate than paresthesia.
So if I understand you correctly, when you first started having RLS symptoms you had motion-dependent pain too? As I recall, your RLS started later in life, right?
Down in my neck of the Alaskan woods (southeast) it's about 60F and raining...pretty typical of our summers, but we live in a rain forest so what can you expect?
Have you been hugged today? If so, here's another, if not, here's your first! Your input on this forum has help me and many others immensly. Best,
I'm sure I'll hear about this if I'm wrong, but I'm going to try to explain the above words to you. Sorry if I give you the wrong explanation, and if anyone out there knows if I'm wrong, PLEASE correct me--I WON'T BE OFFENDED. I want Sue to get the correct information.
I believe Paresthesia means an abnormal skin sensation such as tingling, tickling, itching, or burning (I would consider the creepy-crawly seneation of RLS as being paresthesia, but I could be wrong). I had never heard of that word until I got on this board).
Augmentation means that some drugs have to have their dosages increased periodically. I REALLY hope that's right. And IF I'M WRONG, plese be KIND. Okay? Jumpyowl would know for sure. He's our resident expert. He's very knowledgeable on so many things. We are really lucky to have him!! Hopefully he'll see this thread and respond and correct me if I'm wrong!! I don't want you to get the wrong information. By the way, my bio is on page 1/New to RLS/New Members and Current Members Please Help.
And, welcome!! We're glad you found us!! We'll all try to help so just ask anything you want to. Everyone is really nice!
shorne wrote:Sorry to show my ignorance, but what is paresthesia? And what is augmentation I see some of you writing about?
Augmentation is a worsening of RLS symptoms in the course of therapy. Symptoms may be more severe and start earlier in the day (e.g. afternoon rather than evening) than before treatment began and may spread to different parts of the body.
Augmentation is a worsening of RLS symptoms in the course of therapy. Symptoms may be more severe and start earlier in the day (e.g. afternoon rather than evening) than before treatment began and may spread to different parts of the body.
Thanks, Clara, for clearing that up. I was afraid I was wrong! I was hoping someone would clarify that for me. I've been watching this post since I wrote it, hoping someone would correct it if I was. Sorry, Sue!! Our Clara IS so smart!! Clara, I TOLD YOU you may become an expert in RLS someday!!! I was almost afraid to post what I did. I don't want to give incorrect info. But, thank goodness, you came along!!!
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