neveragain444
02-20-2009, 11:21 AM
I have had CFS for 12 years and fibromyalgia for 9 years, usually in denial, always trying to find out what the cause is behind it all, nothing ever seeming to making a difference.
I have sleep disordered breathing where I fight to breathe in my sleep, my oxygen level drops like someone with apnea but not quite so severe. I used a CPAP machine for over a year, it did not phase my fatigue. My sleep doctor said this can't be the cause of my fatigue.
I have GERD and irritable bowel syndrome. I've also had Barrett's esophagus. My bowel problems are aggitated by my GERD. One time I starting using a multi-enzyme formula and my energy level came back for a good 10 days. Then my gastroenterologist switched me over to a pancreas enzyme prescription and I started feeling tired again, I went back to the multi-enzyme formula but never regained my strength.
I also have ADD. Am not taking my Adderall anymore, with or without it, I just don't function well. With it, makes a little difference but it's not really life changing. I can't get things done. I can't get myself motivated to want to do much of anything, because I am 24-7 in utter misery of pure exhaustion.
My pain is protruding into my sleep. I wake up hurting from my kidneys/bladder or my shoulders/neck and not a night goes by anymore that I am not up at least several times a night. I am taking Ambien, Flexeril, & Darvocet which is being used to treat my TMJ pain, yet with all three, I still can't get a good nights rest without waking up. I am going to bed like between 6-7 PM now, and staying in bed way too long.
My pain is starting to inflict my driving, as sitting in a car is making my neck pain flare. I have such a low intolerance for these problems.
I feel like some of my pain symptoms are worsened by the fact that I take prescription medications. One problem I believe is coming from that is all-over tingling sensations. I have also had a long term problem with pain shooting through me.
Sometimes I just bust out and cry because it is so hard living this way. All I want is to just feel better. Sometimes I just want to bang my head into the wall REPEATEDLY until this fatigue goes away, but I know it's not going to work. :<
The only thing I know I have done in the past to make a difference was walking every day for 45 min to 1 1/2 hrs a day. Now if I attempt to exercise, I get short winded, my muscles automatically start hurting, and they feel so weak, it is so hard to even try.
Can one person's body require exercise in order to function when someone else's doesn't?
Right now, I have started using whey protein. I heard it increases energy. So far, it's not phasing me.
If anyone knows anything that helps fight these disorders, please share.
I have sleep disordered breathing where I fight to breathe in my sleep, my oxygen level drops like someone with apnea but not quite so severe. I used a CPAP machine for over a year, it did not phase my fatigue. My sleep doctor said this can't be the cause of my fatigue.
I have GERD and irritable bowel syndrome. I've also had Barrett's esophagus. My bowel problems are aggitated by my GERD. One time I starting using a multi-enzyme formula and my energy level came back for a good 10 days. Then my gastroenterologist switched me over to a pancreas enzyme prescription and I started feeling tired again, I went back to the multi-enzyme formula but never regained my strength.
I also have ADD. Am not taking my Adderall anymore, with or without it, I just don't function well. With it, makes a little difference but it's not really life changing. I can't get things done. I can't get myself motivated to want to do much of anything, because I am 24-7 in utter misery of pure exhaustion.
My pain is protruding into my sleep. I wake up hurting from my kidneys/bladder or my shoulders/neck and not a night goes by anymore that I am not up at least several times a night. I am taking Ambien, Flexeril, & Darvocet which is being used to treat my TMJ pain, yet with all three, I still can't get a good nights rest without waking up. I am going to bed like between 6-7 PM now, and staying in bed way too long.
My pain is starting to inflict my driving, as sitting in a car is making my neck pain flare. I have such a low intolerance for these problems.
I feel like some of my pain symptoms are worsened by the fact that I take prescription medications. One problem I believe is coming from that is all-over tingling sensations. I have also had a long term problem with pain shooting through me.
Sometimes I just bust out and cry because it is so hard living this way. All I want is to just feel better. Sometimes I just want to bang my head into the wall REPEATEDLY until this fatigue goes away, but I know it's not going to work. :<
The only thing I know I have done in the past to make a difference was walking every day for 45 min to 1 1/2 hrs a day. Now if I attempt to exercise, I get short winded, my muscles automatically start hurting, and they feel so weak, it is so hard to even try.
Can one person's body require exercise in order to function when someone else's doesn't?
Right now, I have started using whey protein. I heard it increases energy. So far, it's not phasing me.
If anyone knows anything that helps fight these disorders, please share.
Sponsor
neveragain444
02-20-2009, 12:55 PM
I really think this may be "lifestyle" related choices causing my pain/fatigue.
So today, I'm getting off my AxxxxxxxxS and doing something about it. lol.
:wave:
So today, I'm getting off my AxxxxxxxxS and doing something about it. lol.
:wave:
chilyrabit
02-20-2009, 02:35 PM
Hi there Neveragain! It sounds like you are really having a rough time.
Have you considered changing docs? I recently had to change meds because of a health problem. The first med they gave me did absolutely nothing and it sent me back to where I first started....incredible pain, amazing fatigue. I didn't want to do anything. I tried for as long as I could and then I ended up missing 3 days of work this week and a couple of days last week. I'm not a dr. but i really don't think the couple of pills you take is not going to cause such severe fatigue.
Are you depressed?
I just went through a 3 week bout of depression last month...it was the worst I've ever been.
Let me tell you what I take to keep me functioning, alert and the pain is manageable (not gone by any means, but manageable). First, let me tell you about my diagnosis: FM, Migraines, Shingles, Chronic kidney stones, solitary kidney, bulging discs in neck. I have had a complete historectomy due to extreme endometriosis. This is what I take: Opana ER 15 mg BID (this will be increased next week), Opana IR 10 mg TID, Zanaflex 4mg TID (I don't always take all of this because it does make me a little bit sleepy) (these are prescribed by my pain management dr.) Elavil 50mg QHS, Tegretol (new) 200mg BID, Effexor 150mg QHS, Trileptal 150mg BID (this is all prescribed by my Neurologist. I also have a urologist that I see frequently because I only have 1 kidney and I get stones quite frequently and he prescribes Vicadin PRN. On top of all of that every 2 months I get nerve block shots (about 12-14) at my Neurologist's office.
If I didn't take those meds, I would not be able to function. I of course am opoid (sp) tolerant. I am able to drive and work on these meds.
Do you have any family support? I hope so. If they don't know you are having such a rough time, please tell them. Sometimes, you just need a little bit of help to get through the rough times.
I hope you don't think you are alone. If nothing else, you have all of us on this board. We're not going anywhere. Having a team or at least a couple of really good, compassionate dr.s will help too. Please let me know how you are doing.
Have you considered changing docs? I recently had to change meds because of a health problem. The first med they gave me did absolutely nothing and it sent me back to where I first started....incredible pain, amazing fatigue. I didn't want to do anything. I tried for as long as I could and then I ended up missing 3 days of work this week and a couple of days last week. I'm not a dr. but i really don't think the couple of pills you take is not going to cause such severe fatigue.
Are you depressed?
I just went through a 3 week bout of depression last month...it was the worst I've ever been.
Let me tell you what I take to keep me functioning, alert and the pain is manageable (not gone by any means, but manageable). First, let me tell you about my diagnosis: FM, Migraines, Shingles, Chronic kidney stones, solitary kidney, bulging discs in neck. I have had a complete historectomy due to extreme endometriosis. This is what I take: Opana ER 15 mg BID (this will be increased next week), Opana IR 10 mg TID, Zanaflex 4mg TID (I don't always take all of this because it does make me a little bit sleepy) (these are prescribed by my pain management dr.) Elavil 50mg QHS, Tegretol (new) 200mg BID, Effexor 150mg QHS, Trileptal 150mg BID (this is all prescribed by my Neurologist. I also have a urologist that I see frequently because I only have 1 kidney and I get stones quite frequently and he prescribes Vicadin PRN. On top of all of that every 2 months I get nerve block shots (about 12-14) at my Neurologist's office.
If I didn't take those meds, I would not be able to function. I of course am opoid (sp) tolerant. I am able to drive and work on these meds.
Do you have any family support? I hope so. If they don't know you are having such a rough time, please tell them. Sometimes, you just need a little bit of help to get through the rough times.
I hope you don't think you are alone. If nothing else, you have all of us on this board. We're not going anywhere. Having a team or at least a couple of really good, compassionate dr.s will help too. Please let me know how you are doing.
Rita27
02-21-2009, 06:39 PM
Hi. I am right there with you. I have the same symptoms. About the exercise thing--I used to exercise 5 days a week--cardio and weights and was also active with walking, etc. I slowly cut down because on the days I went to the gym, those nights I was in extreme pain. When I got to 3 days a week, about 35 minutes of just light cardio I felt not too bad, but then it got bad again. I went to two days, now 0 days.
Right now I'm doing nothing because my knees, back, neck, hips, feet all hurt too much if I even try to walk for 10 minutes.
Honestly, if exercise was the cure I would never had gotten fibro in the first place because I worked out for 30 years straight. I'm not saying it's bad, but be careful. There are tons of people who do not do formal exercise, and they don't have fibro or chronic pain.
Personally, I think there is a cause for fibro and arthritis but they just don't know it so doctors blame it on the patient--you're too heavy, you're not active enough, you're depressed....
Of course, it is better for all of us to be able to be active, but if it causes more pain, how is that helping? I hope, however, that it helps you. I don't mean to be negative, just giving my experience so you don't feel bad if you can't do this.
Right now I'm doing nothing because my knees, back, neck, hips, feet all hurt too much if I even try to walk for 10 minutes.
Honestly, if exercise was the cure I would never had gotten fibro in the first place because I worked out for 30 years straight. I'm not saying it's bad, but be careful. There are tons of people who do not do formal exercise, and they don't have fibro or chronic pain.
Personally, I think there is a cause for fibro and arthritis but they just don't know it so doctors blame it on the patient--you're too heavy, you're not active enough, you're depressed....
Of course, it is better for all of us to be able to be active, but if it causes more pain, how is that helping? I hope, however, that it helps you. I don't mean to be negative, just giving my experience so you don't feel bad if you can't do this.
neveragain444
03-14-2009, 04:06 PM
Hi there Neveragain! It sounds like you are really having a rough time.
Have you considered changing docs? I recently had to change meds because of a health problem. The first med they gave me did absolutely nothing and it sent me back to where I first started....incredible pain, amazing fatigue. I didn't want to do anything. I tried for as long as I could and then I ended up missing 3 days of work this week and a couple of days last week. I'm not a dr. but i really don't think the couple of pills you take is not going to cause such severe fatigue.
Are you depressed?
I just went through a 3 week bout of depression last month...it was the worst I've ever been.
Let me tell you what I take to keep me functioning, alert and the pain is manageable (not gone by any means, but manageable). First, let me tell you about my diagnosis: FM, Migraines, Shingles, Chronic kidney stones, solitary kidney, bulging discs in neck. I have had a complete historectomy due to extreme endometriosis. This is what I take: Opana ER 15 mg BID (this will be increased next week), Opana IR 10 mg TID, Zanaflex 4mg TID (I don't always take all of this because it does make me a little bit sleepy) (these are prescribed by my pain management dr.) Elavil 50mg QHS, Tegretol (new) 200mg BID, Effexor 150mg QHS, Trileptal 150mg BID (this is all prescribed by my Neurologist. I also have a urologist that I see frequently because I only have 1 kidney and I get stones quite frequently and he prescribes Vicadin PRN. On top of all of that every 2 months I get nerve block shots (about 12-14) at my Neurologist's office.
If I didn't take those meds, I would not be able to function. I of course am opoid (sp) tolerant. I am able to drive and work on these meds.
Do you have any family support? I hope so. If they don't know you are having such a rough time, please tell them. Sometimes, you just need a little bit of help to get through the rough times.
I hope you don't think you are alone. If nothing else, you have all of us on this board. We're not going anywhere. Having a team or at least a couple of really good, compassionate dr.s will help too. Please let me know how you are doing.
No, never would even dream of changing doctors. My PCP is perfect. Well almost. LOL.
I am taking more than a couple of pills. Taking Darvocet, Flexeril, Ibuprofen, Ambien, Aciphex, Zantac, Mylanta (when needed), plus the recent addition of Dyazide, I also took my Adderall XR today, I had quit taking it for quite awhile, but after being unable to keep myself up out of bed for more than an hour, I figured I needed the boost.
No, I'm not depressed. I try to enjoy my life as much as possible. What's the point in crying? Sure sometimes you got to let it out, but it doesn't help crying over your problems. Finding a solution works much better than moping around, not that all problems have a solution. Or at least something to give you a good laugh. Pull a nasty prank on someone. LOL. Your just making yourself worse letting yourself get into such a shape. Why cry when you can smile? I used to be depressed, suicidal type depression, I guess for 6 years, along with anxiety, post-traumatic stress, but I recovered. And I know stress & depression can drag you down, but it is not going to cause you to be completely drained 24-7. What I would give if it had of been the cause. I don't know why you got so depressed, but let me share something that helped me, avoiding STRESS at all costs. I was being abused and it took a while to recover from that but high amounts of stress always made things so much worse.
I have 3 things in my life that bug me on a regular basis:
#1 my son living in germany (in the military) I HATE THAT
#2 my health stinks
#3 being in love with someone over the past 9 years that I couldn't have if my life depended on it, know that and still can't get over that (lol)
But overall, I am dealing with life pretty well.
My dx's have been Fibromyalgia, chronic fatigue syndrome, auto-immune dysfuction (believe that was bull), Epstein Bar virus, was told I'd end up with full blown Lupus which neither I or my PCP thinks I have, I had kidney stones for 2 years, finally recovering, TMJ, acid reflux disease, hiatal hernia, chronic esphageal inflammation, had Barrett's esophagus (it went away), irritable bowel syndrome, flares of gastritis, all over tingling, interstital cystitis, ADD, sleep disordered breathing, & generalized anxiety disorder. I also had a partial hysterectomy, 2 bladder prolaspe repairs, & nasal surgery. Isn't it fun. GRRRRRRRRRRR. I am also getting tested this summer for a spot I have on my liver. Can't say I want to even tempt to assume why. I believe it'll turn out okay.
Family support. Hahaha. They get annoyed with me when I talk anything about medicine or my health. I want to be a physician but I'm too sick. So I ramble on and on. I don't blame them, but honestly they annoy me too, any stress I deal with usually comes from other family members.
My TMJ is not what has been hurting me. I have to have some kind of strain in my shoulders and neck. It messes with my sleep, it gets worse from laying down, the pain hits the upper part of my neck, runs through my face, and gives me a headache. I got a dream pillow, it only helps a little bit. My doctor gave me Lortab 7.5 for this and I gave it back to him and said no thanks. When the pain gets bad enough, nothing helps. He told me to take the Darvocet & Ibuprofen together when it feels like it's starting to flare up and see if that helps. So far I've only had one extremely bad episode. Awful thing is, when it gets that bad, I will do anything to stop it.
No, I'm not feeling better since this post. I'm feeling worse with my neck, shoulder, face pain, headaches, bladder pain, pain in my ureters & kidneys, stomach pain, esophageal pain, leg cramps. I just can't TAKE IT! My muscle close to my shoulder was jumping the other night when I was in bed. Like if you put a fish hook there and start pulling it up & down. Maybe it's a pinched nerve? But why speculate?
Half of my problems seem to be related to my sleep. Why is pain inflicted when you are sleeping or trying to rest?
Have you considered changing docs? I recently had to change meds because of a health problem. The first med they gave me did absolutely nothing and it sent me back to where I first started....incredible pain, amazing fatigue. I didn't want to do anything. I tried for as long as I could and then I ended up missing 3 days of work this week and a couple of days last week. I'm not a dr. but i really don't think the couple of pills you take is not going to cause such severe fatigue.
Are you depressed?
I just went through a 3 week bout of depression last month...it was the worst I've ever been.
Let me tell you what I take to keep me functioning, alert and the pain is manageable (not gone by any means, but manageable). First, let me tell you about my diagnosis: FM, Migraines, Shingles, Chronic kidney stones, solitary kidney, bulging discs in neck. I have had a complete historectomy due to extreme endometriosis. This is what I take: Opana ER 15 mg BID (this will be increased next week), Opana IR 10 mg TID, Zanaflex 4mg TID (I don't always take all of this because it does make me a little bit sleepy) (these are prescribed by my pain management dr.) Elavil 50mg QHS, Tegretol (new) 200mg BID, Effexor 150mg QHS, Trileptal 150mg BID (this is all prescribed by my Neurologist. I also have a urologist that I see frequently because I only have 1 kidney and I get stones quite frequently and he prescribes Vicadin PRN. On top of all of that every 2 months I get nerve block shots (about 12-14) at my Neurologist's office.
If I didn't take those meds, I would not be able to function. I of course am opoid (sp) tolerant. I am able to drive and work on these meds.
Do you have any family support? I hope so. If they don't know you are having such a rough time, please tell them. Sometimes, you just need a little bit of help to get through the rough times.
I hope you don't think you are alone. If nothing else, you have all of us on this board. We're not going anywhere. Having a team or at least a couple of really good, compassionate dr.s will help too. Please let me know how you are doing.
No, never would even dream of changing doctors. My PCP is perfect. Well almost. LOL.
I am taking more than a couple of pills. Taking Darvocet, Flexeril, Ibuprofen, Ambien, Aciphex, Zantac, Mylanta (when needed), plus the recent addition of Dyazide, I also took my Adderall XR today, I had quit taking it for quite awhile, but after being unable to keep myself up out of bed for more than an hour, I figured I needed the boost.
No, I'm not depressed. I try to enjoy my life as much as possible. What's the point in crying? Sure sometimes you got to let it out, but it doesn't help crying over your problems. Finding a solution works much better than moping around, not that all problems have a solution. Or at least something to give you a good laugh. Pull a nasty prank on someone. LOL. Your just making yourself worse letting yourself get into such a shape. Why cry when you can smile? I used to be depressed, suicidal type depression, I guess for 6 years, along with anxiety, post-traumatic stress, but I recovered. And I know stress & depression can drag you down, but it is not going to cause you to be completely drained 24-7. What I would give if it had of been the cause. I don't know why you got so depressed, but let me share something that helped me, avoiding STRESS at all costs. I was being abused and it took a while to recover from that but high amounts of stress always made things so much worse.
I have 3 things in my life that bug me on a regular basis:
#1 my son living in germany (in the military) I HATE THAT
#2 my health stinks
#3 being in love with someone over the past 9 years that I couldn't have if my life depended on it, know that and still can't get over that (lol)
But overall, I am dealing with life pretty well.
My dx's have been Fibromyalgia, chronic fatigue syndrome, auto-immune dysfuction (believe that was bull), Epstein Bar virus, was told I'd end up with full blown Lupus which neither I or my PCP thinks I have, I had kidney stones for 2 years, finally recovering, TMJ, acid reflux disease, hiatal hernia, chronic esphageal inflammation, had Barrett's esophagus (it went away), irritable bowel syndrome, flares of gastritis, all over tingling, interstital cystitis, ADD, sleep disordered breathing, & generalized anxiety disorder. I also had a partial hysterectomy, 2 bladder prolaspe repairs, & nasal surgery. Isn't it fun. GRRRRRRRRRRR. I am also getting tested this summer for a spot I have on my liver. Can't say I want to even tempt to assume why. I believe it'll turn out okay.
Family support. Hahaha. They get annoyed with me when I talk anything about medicine or my health. I want to be a physician but I'm too sick. So I ramble on and on. I don't blame them, but honestly they annoy me too, any stress I deal with usually comes from other family members.
My TMJ is not what has been hurting me. I have to have some kind of strain in my shoulders and neck. It messes with my sleep, it gets worse from laying down, the pain hits the upper part of my neck, runs through my face, and gives me a headache. I got a dream pillow, it only helps a little bit. My doctor gave me Lortab 7.5 for this and I gave it back to him and said no thanks. When the pain gets bad enough, nothing helps. He told me to take the Darvocet & Ibuprofen together when it feels like it's starting to flare up and see if that helps. So far I've only had one extremely bad episode. Awful thing is, when it gets that bad, I will do anything to stop it.
No, I'm not feeling better since this post. I'm feeling worse with my neck, shoulder, face pain, headaches, bladder pain, pain in my ureters & kidneys, stomach pain, esophageal pain, leg cramps. I just can't TAKE IT! My muscle close to my shoulder was jumping the other night when I was in bed. Like if you put a fish hook there and start pulling it up & down. Maybe it's a pinched nerve? But why speculate?
Half of my problems seem to be related to my sleep. Why is pain inflicted when you are sleeping or trying to rest?
neveragain444
03-14-2009, 04:25 PM
Hi. I am right there with you. I have the same symptoms. About the exercise thing--I used to exercise 5 days a week--cardio and weights and was also active with walking, etc. I slowly cut down because on the days I went to the gym, those nights I was in extreme pain. When I got to 3 days a week, about 35 minutes of just light cardio I felt not too bad, but then it got bad again. I went to two days, now 0 days.
Right now I'm doing nothing because my knees, back, neck, hips, feet all hurt too much if I even try to walk for 10 minutes.
Honestly, if exercise was the cure I would never had gotten fibro in the first place because I worked out for 30 years straight. I'm not saying it's bad, but be careful. There are tons of people who do not do formal exercise, and they don't have fibro or chronic pain.
Personally, I think there is a cause for fibro and arthritis but they just don't know it so doctors blame it on the patient--you're too heavy, you're not active enough, you're depressed....
Of course, it is better for all of us to be able to be active, but if it causes more pain, how is that helping? I hope, however, that it helps you. I don't mean to be negative, just giving my experience so you don't feel bad if you can't do this.
I know, it's not fair is it, some people never exercise or eat right or do anything like such, and never get sick. So why do we have to feel so horrible? Maybe it's bad geens.
The first day I walked, I had so much energy afterwards, that I felt like I could climb the walls. Everytime thereafter, NOTHING. And on top of that, have trouble breathing. There is one day it seemed to make my pain worse but it usually doesn't. I smoke cigarettes, I'm getting short of breath even when not exercising. Maybe my lungs have finally had it but I hope not.
I don't know how your body stands it, exercising all of those years, and now not doing anything. I think you need to fight it, even if it hurts, if not exercising, do something that is somewhat physically active. You don't want to get so down, that you can't manage to do anything anymore.
I am going to keep walking on the days I am able. If I am extremely bad, then no I won't do it. But I have been so inactive for so long, and feel so week, I almost feel like I put myself in this mess by giving in to the fatigue and pain. It wasn't always this bad.
Right now I'm doing nothing because my knees, back, neck, hips, feet all hurt too much if I even try to walk for 10 minutes.
Honestly, if exercise was the cure I would never had gotten fibro in the first place because I worked out for 30 years straight. I'm not saying it's bad, but be careful. There are tons of people who do not do formal exercise, and they don't have fibro or chronic pain.
Personally, I think there is a cause for fibro and arthritis but they just don't know it so doctors blame it on the patient--you're too heavy, you're not active enough, you're depressed....
Of course, it is better for all of us to be able to be active, but if it causes more pain, how is that helping? I hope, however, that it helps you. I don't mean to be negative, just giving my experience so you don't feel bad if you can't do this.
I know, it's not fair is it, some people never exercise or eat right or do anything like such, and never get sick. So why do we have to feel so horrible? Maybe it's bad geens.
The first day I walked, I had so much energy afterwards, that I felt like I could climb the walls. Everytime thereafter, NOTHING. And on top of that, have trouble breathing. There is one day it seemed to make my pain worse but it usually doesn't. I smoke cigarettes, I'm getting short of breath even when not exercising. Maybe my lungs have finally had it but I hope not.
I don't know how your body stands it, exercising all of those years, and now not doing anything. I think you need to fight it, even if it hurts, if not exercising, do something that is somewhat physically active. You don't want to get so down, that you can't manage to do anything anymore.
I am going to keep walking on the days I am able. If I am extremely bad, then no I won't do it. But I have been so inactive for so long, and feel so week, I almost feel like I put myself in this mess by giving in to the fatigue and pain. It wasn't always this bad.