New to forum
Hi everyone! I usually hang around the DS forum but I happened to go through the other forums on the site and find this one. I was diagnosed with fibro back in 2002-ish (I remember it was between the birth of my kids so between 2000 and 2004 but I think it was 2002).
I was also diagnosed with narcolepsy in 2003 (originally we thought chronic fatigue or sleep apnea (because I was obese of course) but the sleep study was clear and the multiple latency the next day indicated narcolepsy). I have never had a doctor actually treat the fibro aside from handing me a Rx for muscle relaxers and pain pills and tell me to lose weight. My current sleep doc retested my sleep studies and now says I don't have narcolepsy but delayed phase sleep disorder and is treated it with Ritalin. It helps ok enough but I am still exhausted physically.
The last few months I have just been miserable. My fibro seems to come and go in flares and sometimes seems like it might be lupus-like but those tests come back negative. Right now even the weight of my clothes sometimes hurts on sensitive areas (and when I tell people that they think I am being overly dramatic). It's like the muscles just hurt so much that wearing clothes sometimes just hurts or is uncomfortable on those muscles. I don't know how to explain that any better. It's not a consistent one spot it moves around. Sometimes the shoulder area, sometimes the lower back, sometimes the thigh etc.
And my migraines have gotten worse. Has anyone else had that happen? I am on topamax and a beta blocker for my migraines right now.
*sigh* I feel broken!
Sorry it is sounds like I am whining. I guess I am a little. Just a little frustrated. I am so tired of being handed pain pills and told to de-stress, lose weight, go to the gym. I don't like taking the pain pills (they don't really help so much), I de-stress as much as I can, I have lost quite a lot of weight and I am happy with my weight loss, and I get to the gym when I can fit it in my schedule and I don't already want to curl up in a ball crying!
Hope everyone else is finding some relief in some way!
Lisa
I was also diagnosed with narcolepsy in 2003 (originally we thought chronic fatigue or sleep apnea (because I was obese of course) but the sleep study was clear and the multiple latency the next day indicated narcolepsy). I have never had a doctor actually treat the fibro aside from handing me a Rx for muscle relaxers and pain pills and tell me to lose weight. My current sleep doc retested my sleep studies and now says I don't have narcolepsy but delayed phase sleep disorder and is treated it with Ritalin. It helps ok enough but I am still exhausted physically.
The last few months I have just been miserable. My fibro seems to come and go in flares and sometimes seems like it might be lupus-like but those tests come back negative. Right now even the weight of my clothes sometimes hurts on sensitive areas (and when I tell people that they think I am being overly dramatic). It's like the muscles just hurt so much that wearing clothes sometimes just hurts or is uncomfortable on those muscles. I don't know how to explain that any better. It's not a consistent one spot it moves around. Sometimes the shoulder area, sometimes the lower back, sometimes the thigh etc.
And my migraines have gotten worse. Has anyone else had that happen? I am on topamax and a beta blocker for my migraines right now.
*sigh* I feel broken!
Sorry it is sounds like I am whining. I guess I am a little. Just a little frustrated. I am so tired of being handed pain pills and told to de-stress, lose weight, go to the gym. I don't like taking the pain pills (they don't really help so much), I de-stress as much as I can, I have lost quite a lot of weight and I am happy with my weight loss, and I get to the gym when I can fit it in my schedule and I don't already want to curl up in a ball crying!
Hope everyone else is finding some relief in some way!
Lisa
www.geekmomblog.com -My Mom blog were I talk about my journey through weight loss & weight loss surgery, my kids, cupcakes, Star Wars & pretty much everything!
Dont think that you are whining. It just feels good to share with people who actually understand what you're going through, without thinking you're a "pain baby", over dramati, or just trying to get attention by getting people to feel sorry for you. I knoe what thats like too. I'm going to see my doc on Friday to talk much more in depth about what to do. I think the surgery triggered a flare up. This is my first major one, where everything from my neck down hurts. My muscles and all my joints. My left hand and foot were both swollen this morning for the first time. Thank goodness, I've never experienced clothes making me uncomfortable, except for the fact I'm fat! I cant imagine. Feel free to come and "whine" all you want. Share what makes you feel any better if anything. We are all hear to listen even if we dont have any miraculous treatment discoveries either!! Good Luck!!
I only strive to be, the kind of person my dogs think I am! 
Of the choices we are given, it's no choice at all....
-Patty Griffin
Trust me hon we all understand where you're coming from. The fibro itself can cause the nerves to be on "alert" and sensitive to everything. There are soooooo many different symtoms of fibro besides the muscle aches. I'm one who doesn't really flare, I'm just in pain 24/7 some days better than others but always all day, everyday. No one who hasn't had fibro can possibly understand what it is like to be in constant pain and feel exhausted from the chronic fatigue. I wouldn't wish this on my worst enemy much less anyone else. They say God won't give you more than you can handle, I just wish He didn't trust me so much! Feel free to come her and vent any time we hear ya!
Hello,
It's not whining! This is such a hard condition to describe, let alone manage.
What you described as "It's not a consistent one spot it moves around. Sometimes the shoulder area, sometimes the lower back, sometimes the thigh etc" I call travelling pain. On my more positive days I think of it as an adventure wondering where the pain will be and when it will hit; of course on the less positive days there is much more bad language and wondering how I can possibly deal with this.
Hang in there, stand up for yourself, and good luck in your journey to finding a way to manage this condition.
It's not whining! This is such a hard condition to describe, let alone manage.
What you described as "It's not a consistent one spot it moves around. Sometimes the shoulder area, sometimes the lower back, sometimes the thigh etc" I call travelling pain. On my more positive days I think of it as an adventure wondering where the pain will be and when it will hit; of course on the less positive days there is much more bad language and wondering how I can possibly deal with this.
Hang in there, stand up for yourself, and good luck in your journey to finding a way to manage this condition.
All of us here on the board are here for each other; so don't think of it as whining.
I know for me it is good that people here really now what were going thru and that when we say we are in pain we are in pain.
My daughter has migrane headaches with her fibro and she has them everyday.
keep us posted how your doing...
Pam
I know for me it is good that people here really now what were going thru and that when we say we are in pain we are in pain.
My daughter has migrane headaches with her fibro and she has them everyday.
keep us posted how your doing...
Pam
I have been telling my doctor about this awful fatigue for over 6 months. I could fall asleep sitting at my desk. My legs feel like I have weights tied to them most days. I sleep good, I get up refreshed, 2 hours later I'm ready for a nap. I'm just soo fatigued. Nothing helps. I don't have the trigger points like fibromyalgia.
I can relate to all your suffering. I just don't think every doctor understands (or cares). I don't think mine does. She changes the subject back to my blood pressure, my depression. I just want to get rid of this fatigue. I did have low vitamin-D level, but it doesn't seem to every come up to normal. I think I'll try to find a speciliast. Maybe a chiropractor could help.
I can relate to all your suffering. I just don't think every doctor understands (or cares). I don't think mine does. She changes the subject back to my blood pressure, my depression. I just want to get rid of this fatigue. I did have low vitamin-D level, but it doesn't seem to every come up to normal. I think I'll try to find a speciliast. Maybe a chiropractor could help.
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