Relaxing Bringing on Symptoms

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Sleuth
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Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Relaxing Bringing on Symptoms

Post by Sleuth »

I have symptoms just about 24/7. They usually click in big time at about 1 or 2 pm. That is when I stop working and sit down to have lunch and, forbid the thought, relax by watching some television.

I don't know that much about relaxing and the onset of symptoms, but will give a couple of examples.

1. If I sit on a desk chair and work on my desktop computer, I can stay symptom free for hours. If I sit on my couch watching television while working on my laptop on the coffee table, within a minute or two, I have symptoms.

2. My couch is low and rather uncomfortable. That's another story. I usually eat sitting on the edge of the couch with the food on the coffee table. I have to lean over, which is not all the comfortable. One day, I decided to sit all the way back on the sofa, which was far more comfortable. Within a minute or two, I had symptoms.

3. I bought a very comfortable living room chair. When I tested it out at the store before buying it, everything was fine. The minute I sat on the chair in my apartment, I had symptoms. I have not sat on the chair since.

I can no longer sit or lie down and watch television without having symptoms. I can no longer sit and read or play with a handheld solitaire game I've had for years. For years, watching television and playing with this game was like a giant Valium to me. I really miss this form of relaxation.

Is this common?

Thanks.

Dale, a woman who was named after Dale Evans, which makes me the only 66-year old Jewish cowgirl from Brooklyn. :roll:

dogeyed
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Post by dogeyed »

Sleuth,
Your symptoms firing up at rest, this is the hallmark of RLS. That is THE most annoying feature of the disorder, just when you are ready to rest, the RLS hits. However, don't give up. All you have to do is, just before you rest, walk around for a few minutes, stretch your legs out real good, you know, touch your toes, pull hamstrings, rub your feet and calves, and if necessary, then put on some support hose and socks (you'll be able to take them off shortly, if they bother you). In addition, if you have medication for RLS, take it about an hour before you're ready to sit back. Those things will conspire to lessen the tightening in the legs that happens naturally with people who have RLS and are trying to relax.

If those easy things don't work after a few tries, your RLS medication levels are not high enough to help you, so check with your prescribing doc about raising dose and/or adding in another drug. Pain control should be good enough to where you can rest and not have symptoms.
GG
"It's not how old you are; it's how awful you feel."

ViewsAskew
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Post by ViewsAskew »

As Dogeyed said, it's the hallmark....and the bane.
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.

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

How do you bear it? I feel as though I've been given a living death sentence.

Sorry, tonight is very bad for some reason. I went to the doctor and got a cortozone shot in my foot. I have an inflamed heel which makes walking very painful. Terrific. I can't sit, lie down or walk.

I'm not on meds yet. I had to take a blood test today for the new doctor I'll be working with. Hopefully, she'll give me something early next week when she gets the results of the blood tests.

I have to get up now. I can't sit at the computer anymore.

Have a good night.

Dale

SquirmingSusan
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Post by SquirmingSusan »

I don't mean to sound flip, but, "Congratulations, you have RLS." That is, for me anyway, the most annoying thing about it. I have this great meditation software that I tried in the evenings before bed a couple times. I would use it and get all relaxed and feeling at one with the universe, and then all of a sudden it was like a herd of fire ants got let loose on my legs. Even when I'm adequately medicated on methadone, I can't do relaxation exercises.

I like to go to workshops on various spiritual themes, and there are always some kinds of meditation/relaxation/getting in touch with the body exercises. I just have to get up and walk out of the room because it's the worst possible thing for me. I have to stick with the more active forms of meditation, like Tai Chi or walking the labyrinth, or just dancing.

So sorry about the heel pain, Dale. That really makes things difficult. Do you have plantar fasciitis? Seems like a few of us have that. I hope you can get that under control, as well as the RLS.

Hang in there, cowgirl!
Susan

coaster
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Post by coaster »

Sleuth wrote:....I went to the doctor and got a cortozone shot in my foot. ....
I'm not on meds yet. I had to take a blood test today for the new doctor I'll be working with. ...

Welcome to the great adventure!! :( And adventure it is; not one we'd want to be on, but life sends us on strange and unwelcome journeys sometimes. This is an adventure where you learn as you go. And I'd encourage you to learn as much as you can, because this is one of those mystery illnesses that a lot of doctors don't know much about. So part of the adventure is sometimes having to educate your doctors. (Would that we'd get paid for doing that, but I can't issue a CE certificate :lol: )

A note here: some meds cause RLS symptoms to be worse; I'm afraid it's different for everyone and you and your doctor will just have to experiment to find the ones that work for you and avoid the ones that don't. SSRI-type anti-depressants are probably the worst.
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

ViewsAskew
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Post by ViewsAskew »

Sleuth wrote:How do you bear it? I feel as though I've been given a living death sentence.

Dale


I think that's why so many of us get a bit cranky at times, often have miserable outlooks, and generally feel awful.

I give in to those types of feelings more than I wish I did. I want to be the person who always sees that someone else has it worse, that at least I can do [insert whatever]. Like that story of the woman who has successive things go wrong and each time finds the blessing in it (like now that I've lost my hair through chemo, I don't have to worry about styling it, etc.)

But, there are times where I just can't get there. Here lately, I've had months of those times, sort of constant rather than intermittent. A week or so ago, I somehow broke out - not intentionally but by accident. A very happy accident.

While it sounds syrupy and like a platitude, it seems to me that we do have a choice about how we see things and that we make our own happiness. I just have to periodically remind myself of that....and start being happy. I am loved, I have a loving family, I have the most wonderful life partner that could exist, and the list of things for which I feel gratitude goes on and on.

Find just one thing to be grateful for (some days I can't - or rather won't). When I start feeling like this is the worst possible thing, I try to remind myself of that gratitude frequently, and see if I can't find another, and another. Even the first one causes something to change in my brain. The more I think of, the more I can feel the switch in my brain.

I recently decided that RLS responds to The Secret (call it what you will, such as the Law of Attraction). The more I think about RLS and the negative, the more I get of it. The more I think about other things and the positive, the less I get of it. Even when in the midst of RLS, if I can stay focused on other things, it doesn't get a hold on me.
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.

Sleuth
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Location: New York City

Post by Sleuth »

Unfortunately, right now I am going through other very horrible life experiences, most out of my control. Even my psychiatrist says I'm in a very bad place. I will spare you the details. Quite honestly, I'm hard pressed to find anything to think about that will cheer me up.

I am going through this all by myself. I live alone, with no family or friends to help in any way. I can't talk about the RLS with anyone. Whenever I mention it, I hear "Isn't there a medicine for that?". I'm sure that is because the market was flooded with television commercials for Requip last year. If I try to explain the difficulties associated with RLS, they turn away. I understand that it makes others feel helpless, but it sure leaves the RLS patient to suffer in silence. Many think it is a psychological problem, which only adds to the problem.

Every new problem is hard for me to handle. My inner resources are depleted. RLS doesn't give me a chance to even replenish them. The inflamed heel was the straw that broke the camel's back. I honestly don't know what to do with myself now that sitting, lying down and walking are painful.

From what I've read of the drug therapies available to me, I am fearful of all the trial and error that is awaiting me. Yet I somehow go on. I honestly don't know how. Maybe I'm stronger than I think or the will to live overrides everything else.

Dale

ViewsAskew
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Post by ViewsAskew »

Dale, I can't pretend to know how difficult a time you are having. It sounds like any of us would be having a difficult time with all that is happening.

I can honestly say I don't know how I'd be handling it if I were in your position. I haven't been alone in a quite awhile, but remember how that feels. And, I certainly know how it feels to have physical things going on that limit you, and that are like the sick icing on the already miserable cake.

I don't want to sound like some PollyAnna, because I truly don't feel that way. But, I do see some wonderful things in your life.

You found this board. No, you don't have anyone locally that you know of, but you have all of us. We truly listen, day or night. We have a chat function - either with headphones or using a traditional typed format - that if you post and say you want to talk, it's very likely someone will do so.

You found a local doctor who really seems to understand RLS and to be willing to help you. That is truly more than many of us every get. Treasure that. I'd do just about anything for that. I've been on this relatively dark and dreary road for a very long time. Not once have I had a doctor that knows as much as yours does and I've seen over ten doctors to date. But, I have many other things to be grateful for...I will get that one eventually.

You are smart, willing to learn, able to learn, have the resources (a computer and time) to find out about this and get up to date information. These may not seem like much when compared to the not so positive side; the trick is not to compare them and focus on this stuff instead.

It's funny how something like the heel thing can completely knock it all out of any positive light. I have had plantar fasciitis in both heels. While I had it, I had a very hard time because you feel unable to do anything! More recently, I injured my knee (a chronic condition that flared up). I've been "out" from doing anything much physical since June, 08. That is what put my over into the funk I've been in for months. Well, that along with too many things to go into. Not being able to do things physically also hurt my mood because physical activity helps lift a bad mood. The double whammy was not good.

I finally found things I can do without too much pain. There is still pain no matter what, but I did find a Pilates CD I can do that doesn't hurt my knee and I've gotten back in the pool. I can't kick much, but I can still use my upper body. I think being able to do this has helped the most. I've found some gratitude again. I finally believe that my life isn't over and that I'll never have it back.

I hope you can....find something to hang on to. Find something to be grateful for. Find someone here to talk (collectively or privately). My belief is that the vast majority of us are stronger than we think we are. Sometimes someone is not, but in all my years here, I've certainly seen a disproportionate number of us in the former category. I feel that you are, too. You will surprise yourself. One day, you'll realize that you got through this and be amazed.

I hope you got some sleep tonight. It's 5 now and I have to get up and finish work for a client by 10 AM at the latest. At one point, 5 hours was a luxury, as I spent months getting from 1/2 hour to 2 or 3 hours each night. Over time and with medication that actually helps me, I've gotten to the point that I only get less than 7 to 8 hours maybe 10-15% of the time. Another thing to be grateful for. I'll try to remember how grateful I am when my alarm goes off in 5 hours and I have to get up and be productive quickly and get some stuff finalized and sent to the client before the end of the day.
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.

dogeyed
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Post by dogeyed »

Dear Sleuth,
Well, to be under pressure from lousy life experiences, and RLS on top of it, it's a wonder you are still able to form a simple sentence, child. I hope your doc will give you hydrocodone or other opiate stuff right off the bat, so you can finally fall down and get some rest, while he plays around with all the other meds out there. Cuz lack of sleep ain't helping, that's fo sho.

One thing I do when I get the doldrums, is what Cesar Milan does with his dogs on the Dog Whisperer TV show. He snaps them out of it and moves them forward with a walk. In people language, this means put your bogged-down thinking into forward gear. Oh my gosh, this simple trick has dragged me out of some pretty scary places. To go forward, I think about stuff I'd like to do in the future... for example, if I got three doc appointments that week, I think about the following week and how I'll get to rest and goof off.

Me, I'm so wrecked up and disabled, that I gaze at our yard and want so much to go out and garden, but I physically cannot, so I draw plans to tell someone else how to arrange it, and when the landscaper people show up, I order them around. Now if I could just get someone to unpack all my moving boxes from three years ago...

Life do get tedious, and as I said, it's like being stuck, like quicksand to get out of. You have to break the surface with body in floating mode (in case you ever get in any), and dream your way to the shore.
GG
"It's not how old you are; it's how awful you feel."

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woodsie357
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Post by woodsie357 »

Dogeyed - I can relate so much to your last post. I'd like someone to clean my house =-). I'll try your move forward approach it sounds like a winner.
Someone cares about your sleepless nights

coaster
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Location: Wisconsin

Post by coaster »

ViewsAskew wrote:... Even when in the midst of RLS, if I can stay focused on other things, it doesn't get a hold on me.

The only problem is, you can't go to sleep while focussed. Falling asleep requires becoming unfocussed. ;)

A conundrum...... :lol:

I think one way to rephrase the above is to say that RLS symptoms respond to activity and diverted attention. If you can engage in something that captures you, then the RLS is held at bay. However, one has to take a break once in a while. :)

RLS, at least severe cases, can NOT be resisted by mere will power alone.
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

coaster
Posts: 58
Joined: Fri Jul 14, 2006 12:56 am
Location: Wisconsin

Post by coaster »

Sleuth wrote:I am going through this all by myself. Dale


NO YOU'RE NOT. NOW YOU HAVE US.

However, if you need some real live warm bodies to share with, find an RLS support group where you are. The RLS foundation has a list of such groups. If there isn't one where you live, START ONE!! :)

Your comment about depleted resources is right on. You NEED to get some rest. It's not possible to cope without sleep. Don't be afraid to ask your doctor for sleep medication and don't be embarrassed to take it. The OTC sleep aids are useless against RLS. Ambien works pretty good for me, and it's available now in a generic.
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

mackjergens
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Post by mackjergens »

Slueth,
I think what ViewsAskew posted is so very true, you just have to reach out of yourself and find something to be thankful for. Trust me I know how hard that is to do, because for over 25 yrs I walked the floor nightly with rls living on 2-4 hrs of sleep, while raising a family/working. Some how you just manage to get thru it.

At that time there were very very few Drs that knew what I was talking about when I said I had creepy crawley feelings in legs and just had to get up and walk all night. I got very strange looks, but no offer of help. They simply would say, I dont know how to help you, so after many times of trying to talk to Drs, I finally gave up and just handled it the best that I could. walking, taking hot baths all during the night. and walking more. About 10 yrs ago in the middle of the night I sat down to computer and typed in creepy crawly feelings in legs and all this info about RLS popped up. I was so excited that I printed off info and gave it to my spouse the next morning.
Then I went in search for a Dr to help me and found that still many many Drs were very much uneducated in rls. Slowly I worked my way thru several Drs and finally found one that was willing to learn rls with me
10 yrs have passed and I still find that very few Drs really understand rls.

The best advice for you is to read ALL the info you can find on the web about rls, educate yourself, because you will probably have to educate your Drs, and the more you know, the better treatment you can find for yourself.

let me give you atad bit of advice I learned the hard way. never fight the urge to move, if you cant sleep, get up and get busy doing something to keep moving, cleaning house or what ever, as long as you can move, because you will find relief in movement. you might try sitting in a recliner if its also a rocker, and rocking, at least you can be comfortable while still moving your legs. When you feel your legs getting quite, just lean back in recliner and go to sleep, because 9 times out of 10 if you get up and walk to your bed, the rls will kick back in.
The more you fight rls, the more stressed you become and the more intense your rls will become. So try to not stress.

make sure you know the meds known to make rls worse, you can find those on www.rlshelp.org and also print out the list of foods that are known to make some rls worse.

Every time I get down about rls, I remember my grandmother who lived till she was 96 and had rls for all those yrs, and never found any Dr that would treat her rls. She is my inspiration to continue to move on thru my life even when my rls flares. I am also very lucky to have found that pain meds (no pain with my rls) but it does stop the creepy crawlies and have 2 drs that are find with me taking hydrocodone or ultram(tramadol) I am also lucky that my rls is mainly at night.

Please dont ever give up, because once you do that, its awfully hard to go back and pick up the pieces. just try very hard to find something positive to do with your life, even when your rls is raging. dont let it take over your life. Life is way too short for that!!!!

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

Oh, dear. Thank you all so much. I just got over crying my eyes out after reading all your postings. You know, crying from the toesies!

This is all so new to me. I came to RLS rather shell-shocked from a 2-year mammoth construction job going on right underneath my window. That is the reason I took the stupid Abilify in the first place. I didn't have much resources when I found about the RLS, so you can imagine what I have right now. Minus zero.

I am recouperating from cataract surgery, so seeing is very difficult. I have been walking around with a Ganglion Cyst on my right wrist for months now. I've had cortosone shots, which have not helped. My only choice now is surgery. I decided I will endure the pain rather than have surgery on my right wrist. I have a little business and need my right hand. Heck, how would I pick my nose without my right hand. :?

My 88-year old mother has lung disease and lives by herself in Florida, with only an aide coming in 6 hours a day because that is all her insurance policy will cover. That policy ends this year. She has no money, so I don't know what will happen. She is slipping away from me every day. My only sibling, my sister, has decided that my problems "suck the life out of her" and she doesn't want to have anything to do with me.

I have lived in my apartment for 38 years, but due to gentrification, the neighborhood has drastically changed. All the people my age have left to be replaced by rich, young and beautiful people. I feel like a stranger in a strange land. I get anxiety attacks in the street because it is like walking in Park Avenue or some such place. Like Dorothy, I just want to click my heels and go home again.

I cannot afford to move. I've tried everything I can think of to get a new apartment outside of Manhattan, but I just plain cannot afford one. I don't know how to drive, so am limited as to where I can live.

Oh, if the noise outside from the construction (yes, it is still going on and will for another 2 years) outside were not enough, they are renevotating two apartments above me from floor to ceiling. They ripped everything out, walls, everything and are starting from scratch with an empty space. That noise is also driving me up a wall.

So, there is my whole tale of woe.

I am very nervous about starting these medications. I don't know what to expect; how I'll feel on them; whether I'll be able to function. I see myself being a drug addict. I am so afraid. :cry:

Dale

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