New To This Board - Just Dx With Fibromyalgia
I'm not sure if I'm relieved to have an actual diagnosis or if it is an actual diagnosis or just a "we don't know what it is so we'll say it's fibromyalgia".
What I do know is that I have been through so many tests and scans to rule out other things like cancer, arthritis, etc. I also know that I have 14 of the painful pressure points. I know I've been in pain off and on for two years. In the last six months it's been chronic and just kept getting worse.
So, I just went to a doctor this week and am taking Norco 2 x daily. I have to take it when I first get up. I am in so much pain when I first get out of bed. Then I usually have to take another mid afternoon. The medicines help most of my pain. The pain in my lower back isn't completely gone but much better. The problem is that I wake up in pain through out the night. I just end up in tears from it. I am going to call my doctor this week and see if there is something I can take at night that is stronger that will help the pain all night long.
I guess this is a long intro but I am trying to figure all this out. I have so many questions. Like, are pain meds the only treatment? If so, how do we protect our livers from taking so many? I'm hoping that this is a temporary pain and that I can go off the pain meds for periods of time. Are there medicine that are just for fibromyalgia? I am going to read as many posts as I can to glean information and knowledge from you all.
I apologize is I sound weird or stupid. This is all just so new to me. Thanks, if you read this far, for sticking with me. All information is welcome!
What I do know is that I have been through so many tests and scans to rule out other things like cancer, arthritis, etc. I also know that I have 14 of the painful pressure points. I know I've been in pain off and on for two years. In the last six months it's been chronic and just kept getting worse.
So, I just went to a doctor this week and am taking Norco 2 x daily. I have to take it when I first get up. I am in so much pain when I first get out of bed. Then I usually have to take another mid afternoon. The medicines help most of my pain. The pain in my lower back isn't completely gone but much better. The problem is that I wake up in pain through out the night. I just end up in tears from it. I am going to call my doctor this week and see if there is something I can take at night that is stronger that will help the pain all night long.
I guess this is a long intro but I am trying to figure all this out. I have so many questions. Like, are pain meds the only treatment? If so, how do we protect our livers from taking so many? I'm hoping that this is a temporary pain and that I can go off the pain meds for periods of time. Are there medicine that are just for fibromyalgia? I am going to read as many posts as I can to glean information and knowledge from you all.
I apologize is I sound weird or stupid. This is all just so new to me. Thanks, if you read this far, for sticking with me. All information is welcome!
You aren't stupid at all! With every diagnosis comes a million questions. If it is fibro it won't go away, ever. There are specific drugs for fibro such as lyrica, cymbalta and savella. The biggest problem is what works for one of us may not work at all for someone else, so there is alot of trial and error to find what works for each of us. I would suggest you get on Amazon.com and get a few books on fibro, stick to ones by docs not the miracle cure ones cause they are bogus. There are also several websites on fibro, so look at those too.
One thing to try at night and first thing in the AM is to stretch all your muscles as they tend to tighten up as we sleep. The first thing I do is pull my legs up to my chest (or close to it) and just hold it for 20 seconds or so because my back is the worst part for me. Also heat seems to help me so I use an electric blanket. Also Icy Hot rub helps sometimes, just don't use it with the blanket or heating pad as that can cause severe irritation. If you have more questions feel free to post here or I'd be glad to answer any PM you might want to send. Good luck and you may want to see a pain specialist or rheumatologist for more help.
Thank you so much for responding. I have been hurting for over 2 years. The last six months have just gotten worse and worse. So, my PCP finally referred me to a pain management doctor. He didn't want to deal with prescribing narcotics to the level he thought I might need.
My back is the most painful part for me too. It is compounded by the fact that I have sciatic nerve problems. The pain management doctor wants to do a medial spinal block to see if that will help some of the back pain. I am scheduled to have it in early June but I am going to having to delay it until the middle part of June because I'm going to NC for vacation the day it's scheduled for. I know there most likely won't be any problems with it, but I don't want to risk it since I haven't been home in two years. I don't want to take a chance that it will cause problems and ruin my vacation.
I suffer from depression and have been on Cymbalta for over 5 years. I also take Buspiron (not sure of the spelling) to help boost the effectiveness of the Cymbalta. I am now taking Norco 2 x a day. It is not enough because I HAVE to take it when I get up to get moving. I have to take it in the early afternoon to continue working. That leaves me with nothing at night. So, that's where the problem is. I wake up through out the night in really bad pain. I am going to call the doctor today to try and get back in to see what she can do for this.
I do know in reading this site and many other fibro sights that I am not nearly as bad as a lot of others. Not that this fact deminishes my pain, but it does make me thankful that I am not as bad as others. I own my own business so that makes it so much better than if I was working for someone else and they expected me to be there on a set schedule. This morning I was in so much pain that I couldn't get out of bed for a while. Thankfully I don't have an appointment until 1:30 this afternoon.
I do plan to frequent this board and others to educate myself on this illness. Thanks again for any advice or information you have!
Margie
My back is the most painful part for me too. It is compounded by the fact that I have sciatic nerve problems. The pain management doctor wants to do a medial spinal block to see if that will help some of the back pain. I am scheduled to have it in early June but I am going to having to delay it until the middle part of June because I'm going to NC for vacation the day it's scheduled for. I know there most likely won't be any problems with it, but I don't want to risk it since I haven't been home in two years. I don't want to take a chance that it will cause problems and ruin my vacation.
I suffer from depression and have been on Cymbalta for over 5 years. I also take Buspiron (not sure of the spelling) to help boost the effectiveness of the Cymbalta. I am now taking Norco 2 x a day. It is not enough because I HAVE to take it when I get up to get moving. I have to take it in the early afternoon to continue working. That leaves me with nothing at night. So, that's where the problem is. I wake up through out the night in really bad pain. I am going to call the doctor today to try and get back in to see what she can do for this.
I do know in reading this site and many other fibro sights that I am not nearly as bad as a lot of others. Not that this fact deminishes my pain, but it does make me thankful that I am not as bad as others. I own my own business so that makes it so much better than if I was working for someone else and they expected me to be there on a set schedule. This morning I was in so much pain that I couldn't get out of bed for a while. Thankfully I don't have an appointment until 1:30 this afternoon.
I do plan to frequent this board and others to educate myself on this illness. Thanks again for any advice or information you have!
Margie
Hi,
*disclaimer: I am not a doctor, the items I discuss are from my own experiences* I also have fibromyalgia, and in my understanding, it is a catch-all kind of diagnosis... exactly "we don't know what it is". I'm glad that you've got all that testing done, and have actually ruled out other things.
I've been fighting this for at least 8 years. Two years ago, I injured my back which in turn became chronic, and I was only officially diagnosed with fibro this past September. But now knowing the symptoms, I've actually been fighting this since I was 16.
At my diagnosis, I had 16 out of 18 points. I've gone through a lot of medications to find ones that work for me. I'm currently taking Oxycontin, Oxycocet (Percocet), and Cesamet (THC) for pain, and Mirtazapine (Remeron) for sleep.
I see that you're on Cymbalta, which apparently has been shown to help, as there are direct correlations between depression and pain. I've been on anti-depressants for about 8 years, and have just recently been able to come off them as my depression has almost disappeared with the pain relief I'm getting.
There are also studies that show that fibro patients don't often get into the 3rd and 4th stages of sleep, or cannot stay in deep REM sleep. There are also direct correlations between the lack of sleep and pain.
The specialist I see gives me nerve block injections., and this has helped. With fibro there is usually a disconnect between the nerve ending and the brain. The nerve endings are sending signals to the brain saying that they hurt, the brain gets this, but the signal going back reaches a dead end and doesn't shut the nerve endings down.
My specialist suggested a book called "From Fatigued to Fantastic" by Jacob Teitelbaum. This doctor is a specialist in fibromyalgia and also has it himself. Even if you only read the first couple of chapters, there is a ton of good information. (I don't follow his vitamin/medication regimin because I don't have extra money to spend on that.)
*disclaimer: I am not a doctor, the items I discuss are from my own experiences* I also have fibromyalgia, and in my understanding, it is a catch-all kind of diagnosis... exactly "we don't know what it is". I'm glad that you've got all that testing done, and have actually ruled out other things.
I've been fighting this for at least 8 years. Two years ago, I injured my back which in turn became chronic, and I was only officially diagnosed with fibro this past September. But now knowing the symptoms, I've actually been fighting this since I was 16.
At my diagnosis, I had 16 out of 18 points. I've gone through a lot of medications to find ones that work for me. I'm currently taking Oxycontin, Oxycocet (Percocet), and Cesamet (THC) for pain, and Mirtazapine (Remeron) for sleep.
I see that you're on Cymbalta, which apparently has been shown to help, as there are direct correlations between depression and pain. I've been on anti-depressants for about 8 years, and have just recently been able to come off them as my depression has almost disappeared with the pain relief I'm getting.
There are also studies that show that fibro patients don't often get into the 3rd and 4th stages of sleep, or cannot stay in deep REM sleep. There are also direct correlations between the lack of sleep and pain.
The specialist I see gives me nerve block injections., and this has helped. With fibro there is usually a disconnect between the nerve ending and the brain. The nerve endings are sending signals to the brain saying that they hurt, the brain gets this, but the signal going back reaches a dead end and doesn't shut the nerve endings down.
My specialist suggested a book called "From Fatigued to Fantastic" by Jacob Teitelbaum. This doctor is a specialist in fibromyalgia and also has it himself. Even if you only read the first couple of chapters, there is a ton of good information. (I don't follow his vitamin/medication regimin because I don't have extra money to spend on that.)
Hello, I have been dealing with FMS for 16+ years. I have had a few of what I call holiday's from it. Sometimes I went several months at a time that the pain was far less than I had been dealing with. In the past couple of years it seems to have gotten worse to the point that I had to leave my job. Well that puts a strain on things. One thing that seems to be something that most agree upon is that stress seems to make the symptoms worse. My new fibro Dr has his main office in Little Rock. He suggested that I gather the family around and educate them, because they would very likely have this thing as well. He also suggested that I read Fibromyalgia For Dummies. Surprisingly, it is very informative and it made me feel as though the things that I was experiencing are very real. In fact, it was like reading a book about me. This Dr said that I should encourage my family to read the book. It will help them understand what I am going through and it really does validate what you are feeling. I was happy with that since so many look at us and think we are just acting this way out of laziness, or we are in fact hypochondriacs.
I too must take a pain med upon rising, and most of the time, especially when the weather is bad, another in the afternoon. I do not sleep well, as most of us do not. There are so many similarities you will find. Get the book ( much less expensive on Amazon). I also take cymbalta. Most pcp's just believe it is in our head, or caused from depression. My goodness, the pain will cause depression! I am not arguing that there is pain associated with depression, but I have delt with this long enough to understand that there is much more than that to this. I hope you feel better. You are in our prayers, and all the best to you.
Kathryn
I too must take a pain med upon rising, and most of the time, especially when the weather is bad, another in the afternoon. I do not sleep well, as most of us do not. There are so many similarities you will find. Get the book ( much less expensive on Amazon). I also take cymbalta. Most pcp's just believe it is in our head, or caused from depression. My goodness, the pain will cause depression! I am not arguing that there is pain associated with depression, but I have delt with this long enough to understand that there is much more than that to this. I hope you feel better. You are in our prayers, and all the best to you.
Kathryn
Thanks Kathryn! I definitely get that book! I do need to educate my family. I think they believe I'm in pain, but they don't know if fibro is "real" or if it's something else. They know I've had a lot of tests to rule out other things and they do like knowing that.
I'm in AR too. I get down to the Conway area every once in a while. Maybe we could meet up for lunch sometime.
Margie
I'm in AR too. I get down to the Conway area every once in a while. Maybe we could meet up for lunch sometime.
Margie
My Dr says he believes FMS to be genetic. No problem here believing that, as many of my family have FMS. Mother, aunt, some of my children all with FMS. We are just starting to really educate ourselves. My ex thought it was in my head, and some of my kids did as well since dad thought so. Now some of them have bee dx with it. Lunch would be nice sometime. Are you pre op or post op?
I am awaiting surgical date. I have been approved by my insurance, now the journey begins. It is my hope that it will help the pain to lose some of this weight. I know it will not makie the pain go away, but maybe some of it will ease when I am not carrying around a whole extra person. My present husband is sympathetic to FMS, his mother has it and tells what she has gone through. Her meds have helped her. Lyrica, and savella are not options for me.. I am currently taking something called nycenta for pain. No more that two per day allowed as I think it has anti inflammatory propertiess and must be reported to any Dr considering surgery. It does help with the pain, certainly much more than the Ultram the pcm would expect to take my pain away. That was kind of like putting a bandaid on a major gaping injury. I guess in a way they all sort of are. I don't want to get hooked on stuff that will make anything worse, but seriously, the pain med in the morning is the only way I can get anything at all done, then the one in the afternoon when I feel like I have suddenly gotten the worst achy flu ever.
Thank the Lord for a pain med that will allow me to live at least some of life! Also Dr has also given me a Flector patch for pain which helps the upper back, but has not helped my lower back. Anyway, hope your evening is a good one. Good Night.
I am awaiting surgical date. I have been approved by my insurance, now the journey begins. It is my hope that it will help the pain to lose some of this weight. I know it will not makie the pain go away, but maybe some of it will ease when I am not carrying around a whole extra person. My present husband is sympathetic to FMS, his mother has it and tells what she has gone through. Her meds have helped her. Lyrica, and savella are not options for me.. I am currently taking something called nycenta for pain. No more that two per day allowed as I think it has anti inflammatory propertiess and must be reported to any Dr considering surgery. It does help with the pain, certainly much more than the Ultram the pcm would expect to take my pain away. That was kind of like putting a bandaid on a major gaping injury. I guess in a way they all sort of are. I don't want to get hooked on stuff that will make anything worse, but seriously, the pain med in the morning is the only way I can get anything at all done, then the one in the afternoon when I feel like I have suddenly gotten the worst achy flu ever.
Thank the Lord for a pain med that will allow me to live at least some of life! Also Dr has also given me a Flector patch for pain which helps the upper back, but has not helped my lower back. Anyway, hope your evening is a good one. Good Night.
Hi again.
Wanted to share a quote from a friend of mine (also with chronic pain, but of a different type).
"And a diagnosis arms me with knowledge, which makes me feel stronger and more in control, even if the truth is that it is more in control over me... but shh, it doesn't have to know that any more after I at least try to be in charge of something in my body."
Wanted to share a quote from a friend of mine (also with chronic pain, but of a different type).
"And a diagnosis arms me with knowledge, which makes me feel stronger and more in control, even if the truth is that it is more in control over me... but shh, it doesn't have to know that any more after I at least try to be in charge of something in my body."
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