Replies to 'Living with Chronic Pain'
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July 25, 2005, 2:56 pm PDT
 Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. You have described a lot of the symptoms I am having with RA. I am currently on a regimen of injections of Enbrel (2X wkly) and methotrexate (1X wkly), plaquenil, folic acid and a couple of others for blood pressure. I am lucky in that I have a great drug plan but I do pay a monthly fee to keep it going. If I didn't have it, Iwould be paying approx. $3000. every eight weeks (Enbrel and metho is very expensive). Like you, I too feel that people my age are doing wonderful things but why is it you never hear about the people like us??? I had to give up my full-time job because working caused big flare ups. I try to stay positive for the most part and do pretty well at it, but the constant pain and fatigue can get the better of you but no one wants to hear about those things. I am also depressed a lot of the time, I am fat (unable to walk most of the time), out of shape but never out of hope. Even though it's hard, I like to take ONE DAY (sometimes one minute) AT A TIME because if you try and look at the big picture and what lies ahead, the depression overtakes what little hope you have left. I won't tell you to look on the bright side or offer any moronically cheerie euphamisms, but tell me what are the other choices??? Suicide isn't an option because I have a wonderful, helpful husband and two sons and two grandchildren who love me and I wouldn't want to cause them hurt and pain because of my actions. Let me know if you find another coping mechanism (besides drugs) other than prayer and hope.....I'd really be interested in considering giving it a try. |
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July 27, 2005, 11:29 am PDT
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. When were you diagnosed with Fibromyalgia and by whom? I was diagnosed in 1996 by Dr. Franklin Kozin, Rheumatologist with Scripps Clinic in La Jolla, California. He's the best doctor I've ever found for FM treatment. He definitely keeps up with the latest info on Fibromyalgia. From what I've read and what my body tells me, FM sufferers normally don't do any weight exercises because of the stress on the muscles, which may cause them to spasm. Usually they just say to do aquatics in a warm pool because it's gentle on the muscles. Are you on any pharmaceuticals for the pain? Some people refuse to take any meds, but then they can't work either and end up on the couch mostly 24/7. I DO take pharmaceuticals - quite a few in fact. It keeps me working and productive which helps me feel better about myself. Plus, as you've read in other messages, it's d**n hard to get on disability anyway! I also suffer from Chronic Fatigue, which most people with FM seem to also have. We recently moved to another house, and I had the worst flare-up I've had in a long, long time. My muscles ached so bad I could barely get up on my feet. I had to increase some of my pain meds temporarily. Because I'm on low doses of several depression meds, I can honestly say that I'm never depressed, just temporarily "delayed" in my life. I've found things to do that release endorphins in me and so by sticking to those things, I've found it fairly easy to stay in a positive mood. It sounds like you've found some good things to do in your meditation, keyboarding, painting, gardening and prayer. Those are all great things to do IF you have the energy that day!
Fran |
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July 29, 2005, 10:57 am PDT
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. THIS HAS BEEN AN EXTREMELY DIFFICULT SUMMER FOR FIBRO. I LIVE IN THE MIDWEST AND HAVE BEEN STRUGGLING. I AM 44 YRS OLD WITH A 13 YR OLD AND 4 GRANDCHILDREN AND I STRUGGLE MOST DAYS. I TOO AM OVERWEIGHT (30 LBS) AND TRY TO GET IT OFF. MOST OF THE MEDS I TAKE CAUSE WEIGHT GAIN, SO THERE YOU GO. MY SALVATION HAS BEEN PILATES!!! I DO THE TAPE AT HOME AND IT DOES HELP WITH THE CONSTANT PAINS IN MY LEGS AND KNEES. IT REALLY HELPS MY NECK!!!!!!!! TRY DO DO ONE THING A DAY FOR YOU AND ONLY YOU. WHATEVER YOU WANT, AND THEN YOU WILL BE ABLE TO GET SOME CONTROL OVER THIS FIBRO MADNESS. NO ONE CAN UNDERSTAND UNTIL THEY GET IT THEMSELVES. SO WE HAVE TO STICK TOGETHER AND BRING THE AWARENESS TO ALL. |
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July 30, 2005, 5:21 am PDT
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. http://www.forbes.com/lifestyle/health/feeds/hscout/2005/07/29/hscout527107.html
Forbes.com - Parkinson's Drug Eases Fibromyalgia Pain By Janice Billingsley For myself, I was diagnosed with Fibro. in 94. It was suggested that the only exercise that I do, was either walking or swimming. Anything else, is to hard on the body.
NOW, by 97, my Dr. then suggested that I have an ANA (blood) profile done. I'm referring to your labored breathing, and chest pain. In short, I tested positive, for Lupus. These two diseases, can mimic each other. And both are very common these day's. |
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March 2, 2006, 9:57 pm PST
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. I understand so much how you feel. if have fibromyalgia with infasis on chronic fatigue. You did not mention how old you are. I am 42 trying to raise 3 children with a husband who is out of town all the time. I am presently dealing with a flare up. everyday I feel like I can't go anymore and though I keep going my accomplishments and productivity is less each day. I wish I could find help during times like this. I do not have family in the area and i only have two family members who even acknowledge that its real and of course they are very far away.
But I put my emote at hopeful because I am reading a book Written by Dr. Amand titled "What your doctor may not tell you about fibromyalgia. He says its reversable but he highly recommends having your doctor help you through the treatment. I've tried everything else I might as well try this. I will be meeting with my doctor and telling her about it hoping she will think its possible and hoping she will help me. The book says that you will feel worse before better but going on like this I figure what do I have to lose.
I won't tell you to look on the bright side or any or moronically cherrie euphamisms because I know from experience some times you just don't even see or know a bright side to look on. but I hope that knowing someone is in the same place and understands will help you. I met a lady from church who has it. fortunetly we can share how others don't believe nor do they help us. We think the lord gave us each other just so we can have some one who understands.
this book says that depression and overweight is part of it.
I understand what you mean about people your age doing wonderful things. i too had so many goals and dreams for my life as a woman and then later as a mother but I can't make any of them happen. I always wanted to play piano and I even have one but it hurts just to type this how can I play piano. I wanted to run and play with my children, go bicycling and camping as a family. basically live love and laugh but it just doesn't seem to happen.
I will be praying that god will give you strength and courage.
sincerely,
Me |
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March 16, 2006, 4:45 pm PST
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. I can relate to pain and suffering. I've had a migraine everyday for over a week now. I took a relpax and laid in bed since i came home from work. Or I would not be sitting here. My head is ok for now, I'm in a slight fog, and I'm up to 50mg of topamax. I can relate to excercise that you can no longer do. I was a lap swimmer and a walker for years and years, and i can't do it any more either. So now I paint and I've been down lately so I've been mostly in bed.I''m on oxygen 24/7 I moved into this apartment last Oct and am not thrilled living here and I'm looking around to move but my plate is full and my health is shot and my business is dying. So for now I'm laying low.One day at a time... I won't tell you to look at the bright side and I won't tell you others are worse off and that's because In The Moment it is about you and what You are going thru..I know.I can Honestly say that to you. I say to myself "tomorrow is another day and maybe, just maybe and hopefully I will feel just a tiny bit better" I certainly hope so anyway, don't we all? |
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July 10, 2006, 10:06 am PDT
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. Hello Sukie, I have Fibro, Progressive MS, and had a heart attack just this last May 21st. I was fat 2 years ago, I had been in a bad car wreck 18 years ago and had immediately gained 80 lbs, then it finally crept up to 120lbs over the next few years. Then in 2000 I wasdx'd with MS and the pain slowly started in until it became so bad I now take 6-8 Lortab 10s a day along with Baclofen, Diasepam, Zanaflex, and a bunch of other meds that are new for my heart. The pain is still there, but 2 years ago I looked into the muirror and got totally disgusted with myself, I was so much in pain I was a pain to be around and I was so fat I looked like a whale. I bought a set of 5# dumbrells and a calorie book of foods and put myself on a 1000 calorie diet and started to work out. Because I can't walk I would just hold the dumbells and swing them back and forth moving my body as if I was running. I made up all kinds of things to do with those weights and discovered lots of good stuff to eat that didn't blow my program. I am alone alot and this was excellent for mre. Because of the MS there's alot I can't do but there is plenty I can and I am now slowly (after the attack) working back up to where I want to be again. It helped to sit on the end of my bed to excercize because I could look in the mirror and see my fat self. I have way bad days sometimes but you CAN'T GIVE UP! Layne |
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October 10, 2006, 8:06 am PDT
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. I know exactly what you are going through, I have Fibromyalgia too. I find it hard to get through the day sometimes the pain is so bad. When I was first diagnosed 2 years ago all I wanted to do was eat and sleep. One morning I woke up and realized I was fat, I started dieting and lost a lot of weight, but now I keep turning to food(Carbs) for my comfort. I have trouble excercising because the pain gets worse. Anyway Im gonna quit complaining now. I am A mother of 3 and a wife. This is one of my bad days |
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May 21, 2007, 12:16 pm PDT
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. Your fibro flare ups caught my attention. About 6 years ago, I was diagnoised with a whole list of things and fibro seems to be the most unpredictible.. My experience has been that even the least bit of stress or worry makes it flare up, even things that I would not have thought twice about years ago. I have also been in pt and they confirm that the slightest weather change or sometimes the possibility of weather change makes a huge difference even if you stay indoors. My doctor tells me to move just as much as feels right and NO More. Pushing just makes it worse. I bought a healing spa (fancy hot tub) which helps some, but not much more than a hot bath. I don't understand the chest pain in water. I was told if I did anything to do it in water and that has proven true for me.
If you think it might be helpful, you could question the water thearpy. I am told go slow, don't push and I don't make it to water arobics, but just walking and mild movements have helped my pain, mood, body fat, etc. more than any other single thing. The other thing that has helped me is to finally let up on myself a bit. It won't be better immediately, but if I can get some time when I don't even remember fibro or my limitations, I have learned to be much happier. That comes slowly and by not pushing. And oddly enough, even though I really really like my doctor, the visits sometimes gave me lifesaving sympathy -- other times it just added stress. The stress of getting dressed, sitting in chairs with sick people and took away from restful time.
I am sorry you are going through this. Nobody should have to. I hope I don't sound like I think I know what will help you, but just felt like I need to share some of my experience |
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May 21, 2007, 1:56 pm PDT
Quote From: sukie45 I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help. I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications. I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro. I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope. Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms. By the way this is one of my good days. I know exactly how you feel I am 44 and have a son 20 in College.I am a Hairdresser and work 2 days a week unless I am having a "BAD" day and you sure know what that is like. I am a very upbeat person when I feel good but just want sleep and be alone when I am not feeling good. Sometimes I just wish for one month at least one of my family members could feel the way I feel on my worst days, Is that Cruel?I love my family very much but I know they get sick of me feeling bad so much.It gets real old I am sure for them cause I know how old it is for me.I hired a personal trainer and was working out then I feel and hurt myself and have not been motivated enough to start back and I felt so good While I was going. I am so disappointed in my self I am too Fat Out of shape and depressed. |
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