Over several months or maybe a year I have been to my doctor with pain, finally she has dx fibro, but i am scheduled to see a specialist. I have neck and shoulder pain very severe. My muscles in my legs hurt like they have been over used. I do not sleep. As far as chest pain I have had every test on my heart with out any problems but tachy, but to touch my ribs they are tender. I am taking meds for depression and anxiety. Have have several phobias flaring up on me. I have pain that shoots thru my body in various places. Fatique that is me that should be my name. I go days on maybe 4 hours sleep before i finally rest. I forget things , some things are serious, i have forgot i was cooking and lets say my dogs saved things by barking when the house got smoky. I do not know if I should go to a pschy dr, but things feel pretty bad at this time. My life has changed dramatically because I just do not have energy. Well this is enough dumping on you girls. please advise. I could say more but my lower back is killing me sitting in this chair. Thanks for listening, i really need someone who understands.
Newbie, I am new to the healthboard, but I read you with interest. I also have fibro, lots of pain and fatigue. I would go long spells with no sleep because of the pain. Waking up at night with muscle cramps, especially in my legs and back. Sometimes for no reason I felt like I had been run over by a truck. The weakness I experienced was scary as was the forgetfulness. Well, I will get to the point. I started a very simple exercise class. I did not think I would survive the first two minutes. Now I work out four or five days a week. I am off my lexapro. I feel better, more energy and not in as much pain. I started exercising a few months ago. I just wanted you to know that maybe your pain can improve.I hope I can continue working out. I wish I knew if it has helped anyone else. Especially long term. I hope this will be of interest to you.
Lesterann
I'll tell you what has helped me a lot, Pilates. But it takes a lot of effort to get ready to do, put that DVD in and get into it. But after my exercise is over, I really am glad I did it. It really has done wonders for me. Plus some of the meds I take
I woke up one day with a severe back ache and it has yet to go away and that will be 9 months tomorrow! I couldn't sleep, came down with RLS. Had tingling down my extremeities, headaches. All of a sudden I was forgetting things, got very confused very easily. I would be walking to my car and then all of a sudden I would have to stop because I would get very dizzy, and then I would have to make a choice if I was going to drive or not.
I was getting these horrible chest pains, which now I remember getting these over a year ago, so maybe that was my first sign. My legs would hurt SOOOO bad and would almost feel like they were sleeping EVERY minute. I could literally punch my legs and feel nothing! Became very tired and was sleeping all the time, that is if my twitching body would let me. Sometimes I would sleep for 3 hours and then others I remember sleeping for 15 hours!!!
Just remember you are not alone and we all understand
welcome hummer and lesterann!
you bet exercise helps. i have been doing the fibro thing for more than 10 years. exercise, a good shrink, a good doc, and your active participation will make this doable. drinks plenty of water, breath deeply and slowly. smile, alot and learn to laugh at yourself.
most of all attitude. you are what you think, so think kind and gentle thoughts about your changing body. this body has carried you thru so much and it will carry you thru this.
fear is not your friend. never forget that. fibromyalgia would have you afraid. it loves your fear. feeds on it, festers in it. tell fear to take a flying leap. educate yourself, empower yourself, and seek the help of others as you find your way.
peace,
bluelakelady
You found a good place to get a lot of support and love. Fibro is something that you can live with, have good and bad days. Sometimes the nights are very long since you can not sleep and other times you sleep for hours (I have not slept more than 4 hours a night in at least 15 years). You can imagine how happy I am for people who sleep well since that is the time we regernerate our bodies. Pilates is one of my favorites since we have to concentrate so much, just as we concentrate in yoga.
Yes, exercise is wonderful. If you are not in the best of shape, be very careful. Start with a little and build it up. It always makes you feel better, getting that seratonin going. Just take it easy until you know where your body is going.
Most of all, do not be hard on yourself! We tend to get angry at ourselves when our bodies fail us. For me that was poison.
Again, glad you found us. Looking forward to your insights and sharing.
Peace and Love,
Janet
"Compassion can help heal our World"
__________________
"Compassion can help heal our world"
are any of you open to taking ambien for sleep? i have been taking 10mg for 3 or 4 years now. i was told i would not build a tolerance to it by a rheumy. for me he was right. i sleep at least 6 hours. good deep sleep. then i have to pee, (old bladder) so i stagger in, and stagger back to bed. be careful as it does affect night walking. then i go back to bed and if my body says yes we catch another hour or so of in and out sleep.
when i rise i do not feel hung over from the sleeping pill. i also went years with out sleep. i got really sick. these days i do pretty good. sure i still get sick. i am not a walking zombie anymore, well, not often.
there are still nights when pain is an aspect of my sleep. i do not rest well on those nights. no pill can make it all go away. i am cool with a night here and there. i take in the night world. i live in the country. star gazing reminds me the universe is large and i can do this.
peace,
bluelakelady
Thanks for your advice and support. I go back to my family Dr Wednesday and I am going to ask for something to help me sleep. I reallly do not see any relief unless my body can rest. I have another questions do any of you see a shrink. I feel I need one but..... you know no one wants to go. Should I ask my family Dr for a referal she is currently treating me. And does anyone have these phobias and fears, the anxiety really scares me. I am having them while i am driving at times. Thanks again. I am so glad I found this board, you know other people just do not realize what I feel and how lonely it gets when no one understands that I just do not feel good and I am not trying to avoid these social events, right now I really feel I need to get my life back in some kind of order. Again THanks
you bet i do. and glad of it. after 9 years of therapy i do know how to do this myself. i still go. it is also good to have the positive reinforcement, so i go. i started out with a woman for 2 years. needed some new coping skills. then i switched to a man in order to have a better understanding of men. still don't have one. understand now i can't. i am a woman. period. still we have a good time together my shrink and i.
when he is in shrink mode he is very honest about his gender. on rare occasions he talks, mostly i do. we play catch up on current events. ours and the worlds. i suppose after all these years, 7, he is a friend who gets paid to listen if i need it, and a friend who gets paid to visit if i don't. i read all his head shrinking books, even the ones he was required to read for his degree.
i would not trade that hour every other week for any other hour any other place. having a person who is not involved with you emotionally in any way, listening, offering new tools, for me is vital to my joy as a person with all these illnesses arguing over my body and who gets it. we all do. the old me, the new me, and the evolving me. this way i never leave me behind.
i was fortunate. both my first choices turned out well. i asked around. at my doctors, to my friends, who did they know? then i checked them out. not all first choices turn out as harmoniously. if the person you choose feels not right, shop on.
peace,
bluelakelady
Welcome humming and lesterann. We all understand how you feel and that others without fm cannot understand how we feel. The problem is that some don't or won't try. We are always here to help.
I also have been taking ambien for about two years now and I have had great success with it. I did try another sleep med, but didn't like it as well. I take 10mg of ambien and 6mg of a muscle relaxer and I get about 4-6 good hours of sleep. Like blue I stagger to the bathroom and if it is a good night I sleep a little more and drift in and out. It is a much better sleep, at least I am able to go to sleep which is such a problem.
I think you should get help from any doc who can help you, it is so hard finding good docs, take the help where you can get it.
welcome newbies, good to have you aboard. sorry for you pains. by the way my name is robin, i am 29 married with 2 kiddos and wanting another one. i was dx with fibro 2yrs ago but pain started 5yrs ago. right now my main thing is that i want another child so bad and i had my last one who is 2 1/2 so it will be interesting to see how it goes once i get pregnant. i am weaning off all my meds right now so that will also be interesting. i'll keep yall posted. robin
And does anyone have these phobias and fears, the anxiety really scares me. I am having them while i am driving at times. Thanks again. I am so glad I found this board, you know other people just do not realize what I feel and how lonely it gets when no one understands that I just do not feel good and I am not trying to avoid these social events, right now I really feel I need to get my life back in some kind of order. Again THanks
Hummingbirdhope[/QUOTE]
hi hummbihope,
what are your fears? what happens to cause the anxiety? what are your phobias? without knowing these things i cannot say if i have been there.
fear and anxiety are not your friends. i tried hanging out with them for a while. too much energy wasted and i never did have fun hanging with them. as for phobias, i suppose i don't really have any. phobia is the irrational fear of something.
tell me what your phobias are and maybe we can offer insight? you will find the way to bring your life to a space that is okay within. it takes time. have patience with your body and mind. they have a right to a day off now and then. at least that is what mine tell me. usually, they are right.
peace,
bluelakelady
And does anyone have these phobias and fears, the anxiety really scares me. I am having them while i am driving at times. Thanks again. I am so glad I found this board, you know other people just do not realize what I feel and how lonely it gets when no one understands that I just do not feel good and I am not trying to avoid these social events, right now I really feel I need to get my life back in some kind of order. Again THanks
Hummingbirdhope
hi hummbihope,
what are your fears? what happens to cause the anxiety? what are your phobias? without knowing these things i cannot say if i have been there.
fear and anxiety are not your friends. i tried hanging out with them for a while. too much energy wasted and i never did have fun hanging with them. as for phobias, i suppose i don't really have any. phobia is the irrational fear of something.
tell me what your phobias are and maybe we can offer insight? you will find the way to bring your life to a space that is okay within. it takes time. have patience with your body and mind. they have a right to a day off now and then. at least that is what mine tell me. usually, they are right.
peace,
bluelakelady[/QUOTE]
Bluelakelady
I am still trying to figure out how to work this board,my concentration is not what it use to be, but here i go.
Phobias right now it is getting test done with equipment over me, no control scared the machine will fall on me, driving on mountains, when i get to the top i panic scared i am going to go over, closed in spaces, sometimes i can not go in my basement fear the house will fall. sems like new one arise at different times. These really are the things that causes the anxiety, other times I just get very high strung. I do not know and I hope my Dr will refer me to someone, if not I am going to make myself appt. If you have any insight or advise I can really use it.
Thanks
Hummingbird hope
hello beautiful hummingbird,
when i was first beginning on this journey i had similar fears. i discovered the fear had to do with my lack of control over my changing body. here i was, helpless to stop what was happening within me, and in denial of that fear, so i perceived my fear in ways i was comfortable with. fear of heights- my fear of falling down. fear of things falling on me- my fear at seeing my life cave in around me. fear of tests- my fear of the results.
these days i still fall down alot. i learned to tuck and roll instead of resist. i overcame my fear of tests by coming to understand they are not bad things. they are sources of knowledge that allow me to make informed choices with my health. as for my life caving in around me i was wrong. it was not caving in, it was simply changing and i was not keeping up emotionally.
i was a highly co-dependant personality. was. not anymore. now i am proactive, outspoken in a more gentle way, and i remove people from my life that are unhealthy to my journey foreward.
our bodies are changing from the moment we are conceived. understanding that i see that i can incorporate that change to the betterment of me as a person.
i did not do this alone. i had helpers along the way. other sick people and two very good shrinks. i learned from a good friend that dying is not a fearful thing. only the final change in life. released from fear i was amazed at how much energy i had to do with as i please. birth, life, illness and death are part of living. illness is not an enemy to be defeated. it is an opportunity to restore the connection between mind, body and spirit.
i get high strung sometimes too. still do. i work on my breathing when it comes. i focus on a plant and breath to it. i have a huge pine tree i breath with. we sustain each other and i see the power in my breath to keep this giant tree alive.
peace,
bluelakelady
Just to say I totally do understand and really feel for you. I too have and have had phobias that have ruled, and and in a way ruined my life. I have fought long and hard to overcome a lot of them, but I do still have a few of the critters hanging in there.
As my dear Blue said earlier, unless you have been there you cannot hope to be able to comment or help with this type of thing. This is why I am telling you some of my little private bits.
I was agoraphobic for years. Not just not going outside. It was truly horrendous. Even getting of a chair to walk from one room to another, because there was space between the two rooms. I couldn't answer the door when someone called, as this meant getting there and having to open it. I used to have someone go to the store for me to get my shopping and so on. Being in a room with another person freaked me out. Endless things.
This type of fear I think is the hardest to deal with because there is nothing tangible out there, why should I be scared of the outdoors? There was nothing that I was afraid of at the time that I was aware of that was going to get me or anything like that. The thing is though, in my deepest being, and in every fibre of my body there seemed to be to me. It is the hardest thing to explain to someone and ultimately you do lose friends because you cannot keep on making social arangments and not keping them. You are thought of as stand-offish. Mind you who needs that type of friend anyway?
I personally feel that I found the cause of mine, after about 15 years of the agony of being like this. I realised that I had the chance of a new life and so I worked at beating this demon that was ruling my life. Eventually I did it !! It took me a long, long time and I do admit that at times I get a social phobia thing going on, where I am uncomfortable sitting in a room - say the doctors surgery, or somewhere like that, or going into a store by myself - but in the main and most importantly to me I am free of the horrid crippling fear I once had.
I do have other fears but these are of things I can feel and touch. I am a bit of the type of person in that I have to do certain things when I go out, for instance in a bathroom - that is if I can bear to go in a bathroom away from home - I have to touch everything with tissue paper wrapped around my hand. Perhaps silly to some people, but to me it is such a real thing. Maybe there are others here who have to do this type of thing, I don't know, but I am just letting you know how things can get hold of you.
I unfortunately didn't have anyone to talk to about my agoraphobia other than my wonderful husband, who was and is my rock all of the time I was fighting it. He actually told me what was wrong with me. Have you got a partner who you can talk to? Holding things back - as I found out in the early days before I actually met my husband - makes things so much worse.
One thing is I am so very, very scared of dogs. The fear that mounts up in me if I see one coming towards me is at times indescribable. I do know the reason though for this fear though, which makes it more understandable to me. Having said that I absolutely adore them. If anyone, even on the TV shouts at a dog or mistreats one, I get so mad. The thing is if they are on a lead and they are tiny, then I can bring myself to be sort of near to them. If I am invited out socially to someone's home, I have to ask if they have a dog. People who don't understand my fear make me uncomfortable by saying things like "oh, they know when you are scared, just relax or "he/she won't hurt you". I find this insensitive, because I cannot control my fear, and I wish I wasn't like this. I just end up crying because of the fear. How can I be so frightened of them and at the same time really like them?
I am also terrified of wasps, I don't go outside in the warm weather. Even in the shade (because of my lupus). I haven't been stung by one, but they seem to fly to my ears and the noise they make scares me. I am not afraid of bees though - weird or what you might think? That is it though, some fears are just not rational, others have such a deep meaning for me personally. One fear though unfortunately, if left unchecked can and does lead to numerous others. Please try to get help.
The reason I am categorising the fears and phobias is because some have a unknown cause and others an obvious cause, as you know. Try your hardest to think about the obvious causes and try to focus on them, and come here and talk to us. We will be here for you.
Wow, what a biggy from me he he !! Something close to my heart though. I know the way these thing can change your life.
Take care
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 07-17-2005 at 03:01 PM.
Golden that was a wonderful and helpful post. We all have some sort of fear or phobia, mine is of birds. Yes, birds I can't stand to have one flying around close to me or flapping their wings. I don't go in pet stores because a bird could be loose and flying around, our mall close to me had lots of birds in it at one time, they come in the open loading dock doors and make their way to the center of the mall for the crumbs people leave from their snacks. Thank goodnes they opened a food court, that makes the mall people keep the birds cleared out otherwise they would be in all the food.
I love watching birds if they are at a great distance, but I also don't go to peoples homes who have birds if they will not cage them and make sure they stay caged while I am there. I most definitly don't sit near the cage either, I won't go to their house if they don't have a place far enough away from the cage to relax.
Simply put I have a very definite phobia about birds, even have dreams about being trapped with birds. Have had this all my life, really, all my life. So what I am trying to say is you gave some great advice about living and dealing with fear and phobia. You can live with a phobia and you can survive a phobia and if you need help, get it, get all the help you need it is ok to need help.
I hope I made sense, I think I'm a little out of it today!
To everyone, thanks so much, I am going to seek help, if I can not get my doctor to send me I am making my own appt this week. You know I just feel my life is out of control, I do talk with my husband but you know I really do not feel he understands, he is going with me to see the Dr this week, I told him I need help and he also feels I need to see someone. I am so glad that i found this board, I am actually crying because I am glad someone knows what I feel, not that I wish this on anyone. But Thanks again
Dear hummingbird, (My husband's favourite bird, by the way).
I am so pleased that you are going to be able to take the first step in trying to get help. That is a massive thing to do. Congratulations to you. Please come back whenever you need to. I will help you all I can.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 07-18-2005 at 06:39 AM.
HOORAY FOR YOU!!
we are in your corner girlfriend! cheering you onward and upward! i am so proud of you. more than proud, i am profoundly delighted!
i see my shrink this thursday.
please come here and tell us how you are doing.
golden and glojer are gentle angels of compassion. bless you girlfriends.
when i was getting a grip on my fear of high places i would go to the top of a dam where i lived at the time and make myself look over the edge. once a year for 10 years i did this. i vomited the first 2 times. i still get a tiny bit loopy. i am not frozen in fear anymore and only have a bit of nausea. i make myself climb ladders when the need arises. i still shake like a tiny leaf in a wind storm, but i do it. i do draw the line at getting on the roof. someday, maybe!
you will find your way my dear new fragil friend. you will.
peace and hope for tomorrows,
bluelakelady
Welcome! So glad you posted this thread...fear is such a huge part of life with fm, and of life in general for everyone. I myself am also a recovering alcoholic, and many years ago during a speech at a 12 step meeting, a man described my fears to a T! I thought I was the only person in the world that woke up every morning with a pit of fear in my belly, wondering what was going to happen to me that day. This man said something that i found so wise, I still repeat it to myself over and over again, 18 years later.
He said, "when i wake up in the morning, and i have that overwhelming sense of fear inside me that paralyzes me and keeps me from doing all the things i want and need to do, I saddle up on FEAR AND RIDE IT OUT!"
Fear is just fear; it is a feeling, overwhelming at times. But it can't hurt us, unless we give in to it. I believe that a large part of the fear that i have stems from lack of self trust. And fibromyalgia feeds that fear, because i can't trust what my body is going to be feeling from one day to the next, one minute to the next. I, too have some days when i can't leave the house, not because i'm tired or in pain, but because i'm afraid of what might happen "out there"...i might BECOME tired, i might BECOME in pain. I might have an attack of IBS...It takes a lot of self talk just to get out of bed some days...the 'itty bitty committee' in my head really gives me a lot of good reasons to stay in the bed!
Hang in there, hummingbird, and know that you do not suffer alone! Sometimes just being able to talk or read about it is enough to give us the comfort and courage that we need to overcome fear, one day at a time...
