Today I get an e-mail from an acquaintance at a woman’s site I advertise on and she mentions that she suffers from Fibraomyalgia and says she understands what it feels like to be blue and in that sort of fog feeling. Curiosity gets the best of me and I look up this Fibraomyalgia and read about it, but when I get to this RLS thing I start freaking out as just the name hit home for me.
I have self diagnosed myself with this disorder, as I did when I suffered from Social Anxiety, School Phobia, Panic Disorder and later Agoraphobia. I was in my early 20’s when I finally found the name for the above and then later recovered and led a pretty normal life for the first time by the time I was 29.
I have always suffered from depression and finally a year and a half ago went to the doctor to do something about it, I am now on Zoloft which I am not to sure is helping me any more.
Just this year at some point I started itching on my hands, no rash just this terrible itch and it has now moved to my feet, the only relief is to leave it alone or put my feet or hands in front of a fan. What bothers me is the burning sensation that goes along with it, it’s almost more than I can stand and it hurts to hold anything in my hands or walk if the itching is accruing on my feet. I think back through the years and realize I have always had this burning sensation, I still don’t know what all this itch is about, but this RLS, I finally have a name for this insane feeling is in my legs and now starting in my arms.
I am thankful I don’t have it as often as some I have read, but I do have to say I am a bit ticked. I don’t want to have this and I know I do. It’s all coming together the insomnia, the laying in bed kicking to make that feeling go away, having to wait so that I can fall asleep and then have such a restless night. I moan and grown all night long and if I wake up forget it, it takes for ever to fall back to sleep again. I am always tired and sometimes can’t even keep my eyes open to watch my babies during the day. If hubby rubs my feet which I just love, it sometimes brings the sensations on and I need him to pound on the bottom of my feet to relieve the feelings in my leg. Many times it doesn’t work or it works only for a moment and I end up kicking or jerking my leg even when I try so hard not too, but that only drives me up a wall trying to remain still, it eventually wins and there I go stomping or pounding my feet on the floor to make it stop.
All I can say is I am happy to know it isn’t all in my head. I thought all these years I was creating these feelings somehow through my thoughts. I have never been able to describe the exact feeling to my husband or my eldest son, but just today reading the words Restless Leg Syndrome said it all and I had found a name for this insane sensation I have been experiencing all these years and that I’m not alone when I thought I was.
I Still Can't Believe It!
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KeepingFaith
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I Still Can't Believe It!
Blessings,
KeepingFaith
KeepingFaith
WELCOME TO OUR FAMILY
Hi KeepingFaith, it's Jan
I'm so glad you found this site, but sorry you have RLS. Many of us were self-diagnosed, also. I was "officially" diagnosed about 15 years ago; I have RLS for 20 years. I was just recently diagnosed with fibromyalgia. It does feel better knowing there are others who know what you're going through, doesn't it? People on the "outside" sometimes look at us as if we have three eyes when we describe what we go through! We all understand. But, you've found a family here, KeepingFaith. People who care--are passionate about helping others and working together as a group to see if we can reach the "ears" of the medical community at the National Convention in Long Beach, CA next week. I want you to know that there are so many wonderful people on this site. You'll find people who are great at researching any question you might have (and please don't hesitate asking ANYTHING). We have people who are very knowledgeable regarding medicine, etc. (not to replace the advice of your doctor, of course--but perhaps will give you some "ammunition" when you visit your doctor). And, we have many people who are willing to listen to you when you are down (we all are at one time or another), or you just want to vent. We may be a diverse group who sometimes have different ideas--and like a familiy--we may disagree sometimes. But, I can assure you that this is a great support site and people genuinely care for one another and we will care about YOU. You've found a home!
Jan
I'm so glad you found this site, but sorry you have RLS. Many of us were self-diagnosed, also. I was "officially" diagnosed about 15 years ago; I have RLS for 20 years. I was just recently diagnosed with fibromyalgia. It does feel better knowing there are others who know what you're going through, doesn't it? People on the "outside" sometimes look at us as if we have three eyes when we describe what we go through! We all understand. But, you've found a family here, KeepingFaith. People who care--are passionate about helping others and working together as a group to see if we can reach the "ears" of the medical community at the National Convention in Long Beach, CA next week. I want you to know that there are so many wonderful people on this site. You'll find people who are great at researching any question you might have (and please don't hesitate asking ANYTHING). We have people who are very knowledgeable regarding medicine, etc. (not to replace the advice of your doctor, of course--but perhaps will give you some "ammunition" when you visit your doctor). And, we have many people who are willing to listen to you when you are down (we all are at one time or another), or you just want to vent. We may be a diverse group who sometimes have different ideas--and like a familiy--we may disagree sometimes. But, I can assure you that this is a great support site and people genuinely care for one another and we will care about YOU. You've found a home!
Jan
No one is alone who had friends.
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KeepingFaith
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Hi Jan,
Thanks for the reply and the welcome. Yeah I figured I was in denial just a bit. I can't believe what I've been feeling all this time actually has a name.
I am lucky as it isn't every day that I feel this, in fact it's maybe a few times a month, but like I said I have noticed it has gone into my arms.
I wondered about the fibromyalgia is how I found this RLS. Just a quick question about the fibromyalgia. Do your limbs stiffen during the night? And the best way I can describe it is like Riga mortise has set in. I know that sounds gross, but that is what it feels like and it’s very painful trying to stretch the stiffness out. I am a mess during the night lol. I visited my mother a month ago and slept in her bed with her and the next morning she told me all I did was toss and turn, moan and grown and that was probably why I was always tired. I guess my husbands use to me, besides he is such a sweetheart he never says anything until I say something then he'll say he's up as many times as I was or as many times as I moved.
I don't sleep that's for sure.
Well I better get, so you take care and thanks again Jan.
Thanks for the reply and the welcome. Yeah I figured I was in denial just a bit. I can't believe what I've been feeling all this time actually has a name.
I am lucky as it isn't every day that I feel this, in fact it's maybe a few times a month, but like I said I have noticed it has gone into my arms.
I wondered about the fibromyalgia is how I found this RLS. Just a quick question about the fibromyalgia. Do your limbs stiffen during the night? And the best way I can describe it is like Riga mortise has set in. I know that sounds gross, but that is what it feels like and it’s very painful trying to stretch the stiffness out. I am a mess during the night lol. I visited my mother a month ago and slept in her bed with her and the next morning she told me all I did was toss and turn, moan and grown and that was probably why I was always tired. I guess my husbands use to me, besides he is such a sweetheart he never says anything until I say something then he'll say he's up as many times as I was or as many times as I moved.
I don't sleep that's for sure.
Well I better get, so you take care and thanks again Jan.
Blessings,
KeepingFaith
KeepingFaith
Re Fibro
Hi Keeping Faith, it's Jan again
Yes, I'm stiff in the morning and IT IS very painful working out of the stiffness. It's also very painful for me to turn over in bed, so I've been sleeping on the couch in our family room. The support on my back makes me feel better. Fibro is very painful. It started in my legs. I thought, at first, it was the painful kind of RLS--but my neurologist diagnosed fibro about 2 weeks ago--although I've probably had it for quite awhile. It scares me a little bit, but I'm going to do everything I can to keep from getting too bad. I know people who have it, and it can completely change your life, according to them. And, having had a neighbor who had fibro, I know how much it can affect your body and your life. I just have to learn how to pace myself when I have little pain, and not try to do everything at once. You know, it could have been a lot worse--I'm just glad I know what is wrong. And, so glad I have a good doctor and a supportive husband and family. I guess this is just another journey, but I'm pretty determined not to let it be a bad journey, if I can help it!!
If you have any questions or want to talk, just PM me or email me anytime.
Glad you feel welcome!
Jan
Yes, I'm stiff in the morning and IT IS very painful working out of the stiffness. It's also very painful for me to turn over in bed, so I've been sleeping on the couch in our family room. The support on my back makes me feel better. Fibro is very painful. It started in my legs. I thought, at first, it was the painful kind of RLS--but my neurologist diagnosed fibro about 2 weeks ago--although I've probably had it for quite awhile. It scares me a little bit, but I'm going to do everything I can to keep from getting too bad. I know people who have it, and it can completely change your life, according to them. And, having had a neighbor who had fibro, I know how much it can affect your body and your life. I just have to learn how to pace myself when I have little pain, and not try to do everything at once. You know, it could have been a lot worse--I'm just glad I know what is wrong. And, so glad I have a good doctor and a supportive husband and family. I guess this is just another journey, but I'm pretty determined not to let it be a bad journey, if I can help it!!
If you have any questions or want to talk, just PM me or email me anytime.
Glad you feel welcome!
Jan
No one is alone who had friends.
WELCOME TO OUR FAMILY KEEPING FAITH!!!! You have all ready met our JAN SHE IS THE BEST. I dont want to know what I would do with out her. Im Lyndarae and have had RLS from birth. I lost my way early in life so things are just starting to come together for me Deppression,panic,pain have been a part of my life for so long I am starting to think its normal... I just wanted you to know that I HEAR YOU!!!! You are about to meet some remarkable people who will take turns rowing the boat for you when you feel you just can't any more that is if they can find the oar LOL.. GOD BLESS YOU. And KEEP THE FAITH (i love that)~~~~~~~~~Lyndarae
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KeepingFaith
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Thank You!!!
Hi Jan,
I started to pm you and erased it all. I don't know maybe just writing some of the frustration down helped. Thank you, it’s nice to know I have someone to talk to.
lyndarae,
You know you sound so much like me as panic and anxiety was the only life I knew.
I realize I am going through all this depression and all this crap for a reason, but I have to admit I am a bit ticked and that's the nice word, I mean I am glad I have a name for this sensation just disappointed that it is real if that makes sense. Don't get me wrong I am probably the least affected by this disorder then some as I feel it only a few times a month, but I thought for myself life would be different by now.
Even though I haven't suffered from panic and anxiety but once really in 11 years I don't have the phobias or the anxiety and not because of Zoloft as I have only been on that for a year or so now. Don't get me wrong medication is needed for some people and they should never feel guilty for taking something that makes them feel better, but I beat my phobias, my panic and anxieties and it was through education mostly.
I had plans by the time I was 40 and within the last few years I have had major changes, spiritually, financially, physically as well as mentally. Where I stand spiritually (my understanding of spirituality, my beliefs) I am content, the last 3. I am really angry as this is not how it was suppose to be, instead of having it together, I'm a flippin mess.
I don't know I guess I am just blowing off steam again. But you know what? I'll just stay angry because that is how I beat all the other crap. I have things to do in my life I have no time for this. Giving & receiving support is my bonus and I need not look at this information as a downer, but a gift that I have been given.
I have tried to shake the name KeepingFaith, but I can’t lol. I am KeepingFaith all over the net. To me KeepingFaith is having faith in everything I do, faith in God, in my life, in people in situations and it reminds me many times when I am down, to just keep the faith, it’s all for a reason and the reasons will be revealed in time.
I started to pm you and erased it all. I don't know maybe just writing some of the frustration down helped. Thank you, it’s nice to know I have someone to talk to.
lyndarae,
You know you sound so much like me as panic and anxiety was the only life I knew.
I realize I am going through all this depression and all this crap for a reason, but I have to admit I am a bit ticked and that's the nice word, I mean I am glad I have a name for this sensation just disappointed that it is real if that makes sense. Don't get me wrong I am probably the least affected by this disorder then some as I feel it only a few times a month, but I thought for myself life would be different by now.
Even though I haven't suffered from panic and anxiety but once really in 11 years I don't have the phobias or the anxiety and not because of Zoloft as I have only been on that for a year or so now. Don't get me wrong medication is needed for some people and they should never feel guilty for taking something that makes them feel better, but I beat my phobias, my panic and anxieties and it was through education mostly.
I had plans by the time I was 40 and within the last few years I have had major changes, spiritually, financially, physically as well as mentally. Where I stand spiritually (my understanding of spirituality, my beliefs) I am content, the last 3. I am really angry as this is not how it was suppose to be, instead of having it together, I'm a flippin mess.
I don't know I guess I am just blowing off steam again. But you know what? I'll just stay angry because that is how I beat all the other crap. I have things to do in my life I have no time for this. Giving & receiving support is my bonus and I need not look at this information as a downer, but a gift that I have been given.
I have tried to shake the name KeepingFaith, but I can’t lol. I am KeepingFaith all over the net. To me KeepingFaith is having faith in everything I do, faith in God, in my life, in people in situations and it reminds me many times when I am down, to just keep the faith, it’s all for a reason and the reasons will be revealed in time.
Blessings,
KeepingFaith
KeepingFaith
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KeepingFaith
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Okay question
Will this eventually get worse? Have you heard that is gets worse?
This is not disabling for me at this point and I am scared it will get worse. It has been the same for the past few years, but I can't really say when it started or really how many times I do experience it. I am going to write it down from now on through just to see how often I do experience this.
My heart goes out to all of you, I am truly sorry you have to endure this.
LOL I don't like sounding like I use to, insecure I guess, afraid of the unkown.
This is not disabling for me at this point and I am scared it will get worse. It has been the same for the past few years, but I can't really say when it started or really how many times I do experience it. I am going to write it down from now on through just to see how often I do experience this.
My heart goes out to all of you, I am truly sorry you have to endure this.
LOL I don't like sounding like I use to, insecure I guess, afraid of the unkown.
Blessings,
KeepingFaith
KeepingFaith
Hey Keeping Faith, Talk about being angry!!!! I messed up big time because of my anger. Lost my hubby, my daughters and my selfrespect. The sad part is I had no idea at what I was angry about. I just new that something was wrong and that I just did not feel good. So much time I have wasted. I work with special needs people. I assist two gals in an apartment. My job is to teach them how to live independtly. After being with them for 8 hours I come home to my cozy little apartment and thank GOD that all I have to live with is RLS. GOD does not make mistakes!!! Im finally at a place where I dont need to know why me!!! That is not my job that is my journey. I still do my fair share of crying and I get so tired of hurting all day 24/7 but comparied to what I see my gals dealing with everyday this is a piece of cake. I watched a 27 year old girl our new client lay on her bed tonight waiting for her meds to show up. And Im talking some heavy duty drugs here. She has to totally depend on others to know what is right for her. She has no say in it. I could go on for hours about my girls and how wonderful they are.That was the big eye opener for me I have a voice about my illness, I know what is wrong I know what works and what doesnt. I have choices I have words to use when I need help. I guess I have really rambled on. I guess my whole point was I have wasted years trying to figure this out and the bottom line for me is it just is. Now its time for me to move on and decided what those things are that I wanted to do. And get busy. Every thing happens for a reason. I would just like to take whatever time I have on this earth and make a difference some how. And just maybe having RLS is how I will do that.I hope I have made some kind of sence with all of this. Its 3 in the morning and I saw some things at work that just made me fel so grateful for who I am and what lays in store for me thanks for listening~~~~~~~~Lyndarae
PS YES FROM WHAT I KNOW RLS GETS WORSE WITH AGE BUT THEN DOESNT EVERYTHING LOL.. I figure I will just get me one of those cool hovearounds those old ladies are in at the grand canyon on the comercial!! I bet they get pretty good gas milage!!!!!! SORRY about my spelling I missed alot of school due to growing pains!!!!!!!
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KeepingFaith
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Hi KeepingFaith
It's Jan
Isn't Lyn something else? (Lyndarae) She is such an inspiration to all of us. I just saw your post and wanted to wish you a good night. I'm soooo glad you found us. I'm glad you can see the "family" in us and that we DO CARE! We're all in this together and we understand each other better than people who don't have RLS. So, just remember, you've got friends here! You take care and anytime you want to contact me, please feel free!
Jan
Isn't Lyn something else? (Lyndarae) She is such an inspiration to all of us. I just saw your post and wanted to wish you a good night. I'm soooo glad you found us. I'm glad you can see the "family" in us and that we DO CARE! We're all in this together and we understand each other better than people who don't have RLS. So, just remember, you've got friends here! You take care and anytime you want to contact me, please feel free!
Jan
No one is alone who had friends.