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Topic: RE: New To This Board - Just Dx With Fibromyalgia
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
Topic: RE: New To This Board - Just Dx With Fibromyalgia
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."
Topic: questions
Hello, I am 9 days post op LapBand. I have had Fibromyalgia for 16 yrs. I have felt really good ....until today, every muscle in my body, every bone and joint is killin me, My surgeon made the comment, managing my post op pain will be a challenge because of my fibro. But I have felt great until today, feel like I have been run over my a bus..full of people..lol. I am not sure what to do, I am also a bit nausated, which this is the first time for that, so lm feeling pretty bad today, any other fibro people experiemce this 9 days post op??? thanks, Franni
Topic: RE: fibromyalgia so much pain
I am already a heavy sweater, in fact, I have been diagnosed with hyperhidrosis, and one of the side effects of Lyrica and Cymbalta is excessive sweating. I have been taking Savella for a little over a week, and the past two days, I have been sweating so bad, even in the AC, that I have to peel my clothes off. Have you had this side effect?
Thanks,
~Amy~So that is where the excessive sweating comes from. I'm on Cymbalta and Lyrica and this has only happened to me twice in the last 60 days. Most of the time I am so cold I can't get enough layers on.
It's always something isn't it? I guess we all just have to figure out which symptom we want to control: Pain, sleeplessness, pain, excessive sweating, pain, weight gain, pain.
Why does life have to be this tough?
Candy
On May 15, 2010 at 7:26 PM Pacific Time, amystone wrote:
I am already a heavy sweater, in fact, I have been diagnosed with hyperhidrosis, and one of the side effects of Lyrica and Cymbalta is excessive sweating. I have been taking Savella for a little over a week, and the past two days, I have been sweating so bad, even in the AC, that I have to peel my clothes off. Have you had this side effect?
Thanks,
~Amy~
It's always something isn't it? I guess we all just have to figure out which symptom we want to control: Pain, sleeplessness, pain, excessive sweating, pain, weight gain, pain.
Why does life have to be this tough?
Candy
Topic: RE: fibromyalgia so much pain
Thanks Candy. I am just dealing with it day to day. Last night was a bad and painful night. Today, I had to get up really early to take my son to school for a field trip. I'm still hurting and also very sleepy. It will get better!
Margie
Margie
Topic: RE: New To This Board - Just Dx With Fibromyalgia
Thanks Talia. I will see if I can find that book and read it. I've been reading a lot of information and I can see how a lot of what I have is all tied together and feeding off each other. It is a journey but at least now I feel like I know who/what I'm fighting.
Margie
Margie
Topic: RE: New To This Board - Just Dx With Fibromyalgia
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.)
Topic: RE: fibromyalgia so much pain
As you will learn while you are reading here, all of our conditions respond to a different medication regime.
I have responded well to Cymbalta 60 mg 2 x day
Lyrica 300mg 2x day.
Vicodin as needed - usually with wet weather, or very humid weather or very cold temperatures.
I am currently also dealing with thyroid numbers way too high and no indication that there is anything wrong with my thyroid. So I will be having hormone tests, thyroid nuclear scans and MRI on my pituitary gland. When all is said and done, my meds may very well change.
Is all this because of the RNY? I don't know yet, however, the worst symptoms came after the RNY. The thyroid was underactive and medicated pre op and post op this last year I have come off the synthroid completely and still running too high on my blood tests.
Good luck and don't get discouraged Margie. It takes about 6 weeks to see any real relief.
Candy
Topic: RE: fibromyalgia so much pain
I was pretty certain with all the tests and research that it was fibro. I just didn't want to hear it. I'm in a lot of pain if I'm not taking a pain med and even with the one I'm on I'm not completely pain free. I know it's a trail and error thing. I just want to be as pain free as possible when I go home to NC to see my family. I want it to be a wonderful trip since I haven't been there in two years.
Thanks for the welcome.
Margie
Thanks for the welcome.
Margie
Topic: RE: New To This Board - Just Dx With Fibromyalgia
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
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