starflyer
02-12-2009, 01:41 PM
i have been feeling very alone and depressed because of all the pain that I'm in. All I want to do anymore is sleep the whole day. I talked to my Dr. the last time I saw him and I asked him about Provogil to help me stay awake during that day. I'm just waiting to se if my insurance will cover it. If it does'nt I don't know what I'll do. I take 1400 miligrams of morphine a day plus oxycodone and sometimes all it does is just takes the edge off. I'm confused, if I sit up to long I get like a burning pain between my shoulder blades. And if I stand my lower back hurts real bad, so what am I supposed to do? I used to be very active, I'd walk everywhere, I still try but it's almost impossible. It gets harder every year. I try to take things one day at a time but it's very depressing. I maybe leave my apt. twice a month, once to see the Dr. and the other to go grocery shopping. I have gotten afraid to leave the sanctuary of my room. Someone please give me some advice, cause I'm tired of hurting
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Rita27
02-12-2009, 03:48 PM
Hi Starflyer, I am so sorry. I know exactly how you feel about the pain. My pain is really bad at night (see my post) so I am kind of the opposite, I am actually AFRAID to go to sleep. None of the meds help me much and often the side effects are a problem.
I also isolate. I used to be extremely active, I exercised 5 days a week and walked my dog. In the past two years I have cut back so much that I virtually only walk around my house and yard. On good days I go to a pool and sauna at the gym I used to work out in, but I go only to relax. It hurts me to even stretch. I rarely leave my house, only if my husband takes me out or for doctor appointments or picking up prescriptions.
I do know what this is like. I'm sorry I don't have better advice. I often feel like my life is over at 52. It is depressing. Do you have anyone who visits you? I look forward to my son coming home and my sister calls me regularly. A pet is very comforting too.
I also isolate. I used to be extremely active, I exercised 5 days a week and walked my dog. In the past two years I have cut back so much that I virtually only walk around my house and yard. On good days I go to a pool and sauna at the gym I used to work out in, but I go only to relax. It hurts me to even stretch. I rarely leave my house, only if my husband takes me out or for doctor appointments or picking up prescriptions.
I do know what this is like. I'm sorry I don't have better advice. I often feel like my life is over at 52. It is depressing. Do you have anyone who visits you? I look forward to my son coming home and my sister calls me regularly. A pet is very comforting too.
rosebuddy
02-12-2009, 08:11 PM
Maybe counseling would help. It did me. Also the pain meds are depressing your central nervous system. Do you take an anti depressant? I bought mandalas and colored them, it is very healing and relaxing. Do little things like bring home fresh flowers. Draw or just color with crayons and chalk. Put together puzzles. Maybe there is a support group that you could join. and then have lunch after. Is there a way, even a small way to help someone else it will make you feel so good. Maybe sponsor a child from an under developed country. It will get you out of yourself and get your mind off of your pain. And make sure that you are receiving the best treatments. Maybe there is a treatment like trigger point injections or phsycal therapy that would help. I am just trying to help. I hope you feel better soon.
chilyrabit
02-12-2009, 10:25 PM
Of course you don't have to answer if you don't want to but what does your doctor say about the severe pain in between your shoulder blades? I'm curious because before I was dx'd with FM, and right after I had my son, I had a severe, sharp, stabbing pain in my right shoulder blade when I tried to sit up. I went for something like 6 weeks of PT along with deep tissue massage. It took a really long time, but it did get better. I still have pain there, but it is not debilitating like some of the other pain that I have. Do you get nerve blocks? I have bulging discs in my neck and also severe lower back pain which hurts if I stand to long, sit to long or pretty much any time it wants too! My neurologist gives me nerve block injections every 2 mo both in my neck and shoulders and my low back. I didn't think they were helping so I skipped them once........what a mistake. Now, I wouldn't miss them for anything. I saw that someone else already suggested an antidepressant. There is no shame there. We do what we have to. I once saw a REM doc and although I wasn't completely impressed with her personality; she said the worse thing a FM patient can do is to isolate themselves. Too bad you live so far away; we could do lunch! LOL I hope that you find something that works for you soon. Have a better weekend!
niecsey
02-13-2009, 04:39 AM
Hi just to let you know as the others... we all undertsand most of us arnt as active or social as we used to be. My rooms my sanctuary too and l only go out when l really have too... docs, grocery shopping etc sometimes lm too sore to even do those! Good luck hun x
starflyer
02-13-2009, 10:23 AM
Maybe counseling would help. It did me. Also the pain meds are depressing your central nervous system. Do you take an anti depressant? I bought mandalas and colored them, it is very healing and relaxing. Do little things like bring home fresh flowers. Draw or just color with crayons and chalk. Put together puzzles. Maybe there is a support group that you could join. and then have lunch after. Is there a way, even a small way to help someone else it will make you feel so good. Maybe sponsor a child from an under developed country. It will get you out of yourself and get your mind off of your pain. And make sure that you are receiving the best treatments. Maybe there is a treatment like trigger point injections or phsycal therapy that would help. I am just trying to help. I hope you feel better soon.
I do have a therapist that I see twice a month,but we don't talk much anymore. It seems that we always have to go somewhere. I guess that's good in a way cause a least I get out for and hour. I do put puzzles together, in fact I have four boxes full of them. I just can't seem to get interested in them now. I have tried too talk but how do you talk in a store? I used to write, now I don't do that anymore. Since I'm very uncomfortable in groups and clam up that option is out of the question for me.
I do have a therapist that I see twice a month,but we don't talk much anymore. It seems that we always have to go somewhere. I guess that's good in a way cause a least I get out for and hour. I do put puzzles together, in fact I have four boxes full of them. I just can't seem to get interested in them now. I have tried too talk but how do you talk in a store? I used to write, now I don't do that anymore. Since I'm very uncomfortable in groups and clam up that option is out of the question for me.
starflyer
02-13-2009, 10:36 AM
Of course you don't have to answer if you don't want to but what does your doctor say about the severe pain in between your shoulder blades? I'm curious because before I was dx'd with FM, and right after I had my son, I had a severe, sharp, stabbing pain in my right shoulder blade when I tried to sit up. I went for something like 6 weeks of PT along with deep tissue massage. It took a really long time, but it did get better. I still have pain there, but it is not debilitating like some of the other pain that I have. Do you get nerve blocks? I have bulging discs in my neck and also severe lower back pain which hurts if I stand to long, sit to long or pretty much any time it wants too! My neurologist gives me nerve block injections every 2 mo both in my neck and shoulders and my low back. I didn't think they were helping so I skipped them once........what a mistake. Now, I wouldn't miss them for anything. I saw that someone else already suggested an antidepressant. There is no shame there. We do what we have to. I once saw a REM doc and although I wasn't completely impressed with her personality; she said the worse thing a FM patient can do is to isolate themselves. Too bad you live so far away; we could do lunch! LOL I hope that you find something that works for you soon. Have a better weekend!
Since I never have that pain when I see the dr. I forget to tell him. I guess maybe I should write it down so I don't forget I have a herniated and a bulging disc in my lower back and unfortunately nerve blocks haven't helped. Just reading the replies I have gotten has helped because I know now, that I am not alone.
Since I never have that pain when I see the dr. I forget to tell him. I guess maybe I should write it down so I don't forget I have a herniated and a bulging disc in my lower back and unfortunately nerve blocks haven't helped. Just reading the replies I have gotten has helped because I know now, that I am not alone.
DeBeachSiren
02-14-2009, 02:51 AM
Hi,
Sorry you're feeling so awful. You've gotten some good advice on here. This is what helped me. Take what helps and leave the rest. Get the book by a doctor who has both fibro and myofascial disease, it wasn't a disease when she wrote the books. Get the book with both on the cover. Her name is Devin Starlanyl MD. There's pretty much anything you want to know in it and way more.
When I still worked I went and got deep tissue massage every week and I felt quite a bit better, because I had the same PTh all the time. I didn't feel bad all of the time, I was pretty loosened up. Now can't work and can't afford it anymore. My pain is in between my shoulders mostly to the left. Other places too, but that's the worst area. I had headaches 24-7 also. I had trigger point injections, nerve blocks and ablations (It lasts longer than nerve blocks do. Anywhere that I've had them lasted about a year.) After 8 years of ablations, that wasn't helping with the headaches anymore, but I still get them other places. I have 2 electrodes under my scalp and have a stimulator battery in my lower back. It took away about 80% of headaches. They can put those in anywhere pretty much now. I go to a pain specialist and he's a pioneer in the field and is the best on the east coast. I don't have to take as much medication. I take elavil, ambien and soma at night. Soma throughout the day, but I try to deal with pain the best I can. I've got morphine for when it gets bad and flexeril. Codeine medication makes me feel better, not goofy, but only if I lie down, they all make me feel nauseated.
I stretch on the big balls. Stretching is a big thing for me, I still can bend over and lay my hands flat on the floor. I break up knots with a soccer ball, tennis ball, golf balls and cut up pool noodles to break up trigger points. In the book I mentioned it'll show you diagrams of where the trigger points are and where they refer pain. There's times when I get really bad in my shoulders and will get a massage. A cut up pool noodle feels really good between your shoulders. It's firm but has enough give and you lie on it and roll side to side while pushing in on it. I've got a laptop and have one between my shoulders right now. They are good to take on planes also, they don't take much space in the carry-on.
I am better with ice bags. I get the refreezeable ones and have them in a gallon zip-lock. I've got the bottom shelf of my freezer with just ice bags. Freeze some water in 8 oz. papercups and use them to massage with and just tear the papercup down as it melts or have someone else do it. Get flat 5" smooth river stones, put them in the frig. and get them cold and do the same. This you can do with heat too. I use moist heat, it helps and when I moisten the pad with the heating pad I use lavendar linen water and it smells good and is calming.
I also have a shepard's hook with all the little knobs on it. It's pretty easy to get to those hard to reach knots that we get between the shoulders. You can get them from a PTh place.
Also the best pillows I've found for me is the ones that have like a hole in the middle so it cradles my neck and puts less strain in the shoulders. The expensive memory pillow lasted 2 days and it went to the dump.
I don't go out that much either, especially when it's cold. When it's nice my dog and I go for a long walk. Wear walking shoes, it's better.
I listen to all kinds of music, that helps your mood too. My girls are loons and we laugh all the time. The rest of my family is in the mid-west, but we talk all the time and make each other laugh. On bad days I give a warning and go to my room and be in the dark and read or watch movies.
Do you have hobbies? That helps too, it kind of takes your mind off of yourself at times. My best wishes.
DeBeachSiren
Sorry you're feeling so awful. You've gotten some good advice on here. This is what helped me. Take what helps and leave the rest. Get the book by a doctor who has both fibro and myofascial disease, it wasn't a disease when she wrote the books. Get the book with both on the cover. Her name is Devin Starlanyl MD. There's pretty much anything you want to know in it and way more.
When I still worked I went and got deep tissue massage every week and I felt quite a bit better, because I had the same PTh all the time. I didn't feel bad all of the time, I was pretty loosened up. Now can't work and can't afford it anymore. My pain is in between my shoulders mostly to the left. Other places too, but that's the worst area. I had headaches 24-7 also. I had trigger point injections, nerve blocks and ablations (It lasts longer than nerve blocks do. Anywhere that I've had them lasted about a year.) After 8 years of ablations, that wasn't helping with the headaches anymore, but I still get them other places. I have 2 electrodes under my scalp and have a stimulator battery in my lower back. It took away about 80% of headaches. They can put those in anywhere pretty much now. I go to a pain specialist and he's a pioneer in the field and is the best on the east coast. I don't have to take as much medication. I take elavil, ambien and soma at night. Soma throughout the day, but I try to deal with pain the best I can. I've got morphine for when it gets bad and flexeril. Codeine medication makes me feel better, not goofy, but only if I lie down, they all make me feel nauseated.
I stretch on the big balls. Stretching is a big thing for me, I still can bend over and lay my hands flat on the floor. I break up knots with a soccer ball, tennis ball, golf balls and cut up pool noodles to break up trigger points. In the book I mentioned it'll show you diagrams of where the trigger points are and where they refer pain. There's times when I get really bad in my shoulders and will get a massage. A cut up pool noodle feels really good between your shoulders. It's firm but has enough give and you lie on it and roll side to side while pushing in on it. I've got a laptop and have one between my shoulders right now. They are good to take on planes also, they don't take much space in the carry-on.
I am better with ice bags. I get the refreezeable ones and have them in a gallon zip-lock. I've got the bottom shelf of my freezer with just ice bags. Freeze some water in 8 oz. papercups and use them to massage with and just tear the papercup down as it melts or have someone else do it. Get flat 5" smooth river stones, put them in the frig. and get them cold and do the same. This you can do with heat too. I use moist heat, it helps and when I moisten the pad with the heating pad I use lavendar linen water and it smells good and is calming.
I also have a shepard's hook with all the little knobs on it. It's pretty easy to get to those hard to reach knots that we get between the shoulders. You can get them from a PTh place.
Also the best pillows I've found for me is the ones that have like a hole in the middle so it cradles my neck and puts less strain in the shoulders. The expensive memory pillow lasted 2 days and it went to the dump.
I don't go out that much either, especially when it's cold. When it's nice my dog and I go for a long walk. Wear walking shoes, it's better.
I listen to all kinds of music, that helps your mood too. My girls are loons and we laugh all the time. The rest of my family is in the mid-west, but we talk all the time and make each other laugh. On bad days I give a warning and go to my room and be in the dark and read or watch movies.
Do you have hobbies? That helps too, it kind of takes your mind off of yourself at times. My best wishes.
DeBeachSiren
starflyer
02-15-2009, 12:26 PM
Hi,
Sorry you're feeling so awful. You've gotten some good advice on here. This is what helped me. Take what helps and leave the rest. Get the book by a doctor who has both fibro and myofascial disease, it wasn't a disease when she wrote the books. Get the book with both on the cover. Her name is Devin Starlanyl MD. There's pretty much anything you want to know in it and way more.
When I still worked I went and got deep tissue massage every week and I felt quite a bit better, because I had the same PTh all the time. I didn't feel bad all of the time, I was pretty loosened up. Now can't work and can't afford it anymore. My pain is in between my shoulders mostly to the left. Other places too, but that's the worst area. I had headaches 24-7 also. I had trigger point injections, nerve blocks and ablations (It lasts longer than nerve blocks do. Anywhere that I've had them lasted about a year.) After 8 years of ablations, that wasn't helping with the headaches anymore, but I still get them other places. I have 2 electrodes under my scalp and have a stimulator battery in my lower back. It took away about 80% of headaches. They can put those in anywhere pretty much now. I go to a pain specialist and he's a pioneer in the field and is the best on the east coast. I don't have to take as much medication. I take elavil, ambien and soma at night. Soma throughout the day, but I try to deal with pain the best I can. I've got morphine for when it gets bad and flexeril. Codeine medication makes me feel better, not goofy, but only if I lie down, they all make me feel nauseated.
I stretch on the big balls. Stretching is a big thing for me, I still can bend over and lay my hands flat on the floor. I break up knots with a soccer ball, tennis ball, golf balls and cut up pool noodles to break up trigger points. In the book I mentioned it'll show you diagrams of where the trigger points are and where they refer pain. There's times when I get really bad in my shoulders and will get a massage. A cut up pool noodle feels really good between your shoulders. It's firm but has enough give and you lie on it and roll side to side while pushing in on it. I've got a laptop and have one between my shoulders right now. They are good to take on planes also, they don't take much space in the carry-on.
I am better with ice bags. I get the refreezeable ones and have them in a gallon zip-lock. I've got the bottom shelf of my freezer with just ice bags. Freeze some water in 8 oz. papercups and use them to massage with and just tear the papercup down as it melts or have someone else do it. Get flat 5" smooth river stones, put them in the frig. and get them cold and do the same. This you can do with heat too. I use moist heat, it helps and when I moisten the pad with the heating pad I use lavendar linen water and it smells good and is calming.
I also have a shepard's hook with all the little knobs on it. It's pretty easy to get to those hard to reach knots that we get between the shoulders. You can get them from a PTh place.
Also the best pillows I've found for me is the ones that have like a hole in the middle so it cradles my neck and puts less strain in the shoulders. The expensive memory pillow lasted 2 days and it went to the dump.
I don't go out that much either, especially when it's cold. When it's nice my dog and I go for a long walk. Wear walking shoes, it's better.
I listen to all kinds of music, that helps your mood too. My girls are loons and we laugh all the time. The rest of my family is in the mid-west, but we talk all the time and make each other laugh. On bad days I give a warning and go to my room and be in the dark and read or watch movies.
Do you have hobbies? That helps too, it kind of takes your mind off of yourself at times. My best wishes.
DeBeachSiren
I used to put a lot of puzzles together, I have about 4 boxes full of them right now. I still work them, just not as much as I used to. It hurts between my shoulders if I sit to long. I like all kins of music too, but I think my favorite are meditation ones. We have dog named Stash, I like to walk him, my roommates boyfriend doesn't like me to , he says it's not my responsibility. It doesn't matter to much to my roommates daughter if I say I am hurting and I need to lay down, she thinks it's my job to keep her occupied or just keep her company. She is 12 by the way. Thank you so very much for your response and advice. I keep ice pacs in my freezer. I babysat a lot last year, and the people went out and bought me one I can keep in my room.
Sorry you're feeling so awful. You've gotten some good advice on here. This is what helped me. Take what helps and leave the rest. Get the book by a doctor who has both fibro and myofascial disease, it wasn't a disease when she wrote the books. Get the book with both on the cover. Her name is Devin Starlanyl MD. There's pretty much anything you want to know in it and way more.
When I still worked I went and got deep tissue massage every week and I felt quite a bit better, because I had the same PTh all the time. I didn't feel bad all of the time, I was pretty loosened up. Now can't work and can't afford it anymore. My pain is in between my shoulders mostly to the left. Other places too, but that's the worst area. I had headaches 24-7 also. I had trigger point injections, nerve blocks and ablations (It lasts longer than nerve blocks do. Anywhere that I've had them lasted about a year.) After 8 years of ablations, that wasn't helping with the headaches anymore, but I still get them other places. I have 2 electrodes under my scalp and have a stimulator battery in my lower back. It took away about 80% of headaches. They can put those in anywhere pretty much now. I go to a pain specialist and he's a pioneer in the field and is the best on the east coast. I don't have to take as much medication. I take elavil, ambien and soma at night. Soma throughout the day, but I try to deal with pain the best I can. I've got morphine for when it gets bad and flexeril. Codeine medication makes me feel better, not goofy, but only if I lie down, they all make me feel nauseated.
I stretch on the big balls. Stretching is a big thing for me, I still can bend over and lay my hands flat on the floor. I break up knots with a soccer ball, tennis ball, golf balls and cut up pool noodles to break up trigger points. In the book I mentioned it'll show you diagrams of where the trigger points are and where they refer pain. There's times when I get really bad in my shoulders and will get a massage. A cut up pool noodle feels really good between your shoulders. It's firm but has enough give and you lie on it and roll side to side while pushing in on it. I've got a laptop and have one between my shoulders right now. They are good to take on planes also, they don't take much space in the carry-on.
I am better with ice bags. I get the refreezeable ones and have them in a gallon zip-lock. I've got the bottom shelf of my freezer with just ice bags. Freeze some water in 8 oz. papercups and use them to massage with and just tear the papercup down as it melts or have someone else do it. Get flat 5" smooth river stones, put them in the frig. and get them cold and do the same. This you can do with heat too. I use moist heat, it helps and when I moisten the pad with the heating pad I use lavendar linen water and it smells good and is calming.
I also have a shepard's hook with all the little knobs on it. It's pretty easy to get to those hard to reach knots that we get between the shoulders. You can get them from a PTh place.
Also the best pillows I've found for me is the ones that have like a hole in the middle so it cradles my neck and puts less strain in the shoulders. The expensive memory pillow lasted 2 days and it went to the dump.
I don't go out that much either, especially when it's cold. When it's nice my dog and I go for a long walk. Wear walking shoes, it's better.
I listen to all kinds of music, that helps your mood too. My girls are loons and we laugh all the time. The rest of my family is in the mid-west, but we talk all the time and make each other laugh. On bad days I give a warning and go to my room and be in the dark and read or watch movies.
Do you have hobbies? That helps too, it kind of takes your mind off of yourself at times. My best wishes.
DeBeachSiren
I used to put a lot of puzzles together, I have about 4 boxes full of them right now. I still work them, just not as much as I used to. It hurts between my shoulders if I sit to long. I like all kins of music too, but I think my favorite are meditation ones. We have dog named Stash, I like to walk him, my roommates boyfriend doesn't like me to , he says it's not my responsibility. It doesn't matter to much to my roommates daughter if I say I am hurting and I need to lay down, she thinks it's my job to keep her occupied or just keep her company. She is 12 by the way. Thank you so very much for your response and advice. I keep ice pacs in my freezer. I babysat a lot last year, and the people went out and bought me one I can keep in my room.
Scrapendipity
02-15-2009, 06:57 PM
You have really heard some good advice on this board. I have Fibro and understand how you feel. I agree with others who have said we are not as social as we used to be. The lonliness and pain can really affect moods.