Recent Posts
Speaking on the whole gym thing. That's what I'm really pissed about right now. I had to go to my yearly gyno appt Thursday morning and I told the nurse about what was going on and that I had just had RNY 3 1/2 weeks ago, and she seemed to "get it" pretty much. The doc came in ans started doing his usual speel about everything and I told him about the "flare up" that's goin on right now, so when I had to lay back for my breast exam and put my arm above my head, my shoulder wpuldnt allow me to let it rest down on the table. Talk about ouch. He understood and finished as soon as he could and still do his job. When I was getting ready to leave he said that the only thing that he was gona recommend was to try to lose weight, but it seemed I already had that part covered. THEN, here comes the big one...Are you exercising yet? No, I told him, one of the main reasons I had this surgery was for my spinal osteoarthritis, and that I had to go on disability because I can barely make it through a grocery store without having to rest and then limping out to my car. So I had the surgery and NOW, I've got the fibro issue for the last 10 days, and I can barely walk, stretch, sleep, or do anything that requires "muscle." Here it goes, " well you could still try the elliptical machine or something like that (he begins to act out and describe what it does, like I'm such a fat piece of crap that I dont even know what an elliptical machine looks like or does...P.O.'d). I assured him that when I can get get some pain in check and feels physically able I caertainly plan on excersizing to the best of my ability. He just stood there and stared at me. Did he not get it. I just told him I could barely walk before and now the fibro kicked in...big time! The medical field does just not "get it" or understand what we go through. For me right now, it hurts to try and wipe myself for Gods sake and exercising at this moment is not on my first 3 things I NEED to have addressed. This isnt just after the fibro issue either. This has happened over a few years with countless medical professionals, because exercising will make me feel better even thoughstand errect for more than 20-30 min is excrutiating. Aaauuuggg! Sorry again for all the "ventalation", It just helps to have people listen, that actually know the same difficulties I have. Hope everybody can find some sort of relief in the near future. Thanks again for lending me your ears, well, eyes.......
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
As for the medical people (note I'm not saying professionals) when they have said things like this I tell them they're wrong, ask them if they have read the research, and when I have the chance - like I do often with my family doctor - bring in medical articles and books about this condition. With some I have seen I change and have received more help. With some not, but tough. I've learned more about this condition than most of them know and I'm going to keep standing up for myself.
Good luck!
It's been a while since I've been on this site. My computer has been down (and still is. I am at my library)
I am getting fed up with being in constant pain.....and even more fed up with everyone saying, "All that weight is causing your pain." Or "If you lost more weight, you would feel better." Etc.etc. blah blah blah!!!!!! Even when I tell them I've lost 120 lbs, they size me up and say I still need to lose more and my pains will go away once I do!!! (hmmmm, I wonder how much pain they would feel if I jammed my foot up their.........Um, ok....moving on.....)
Anyone else going through this? Any snappy comebacks would certainly be nice if any one has any. Thank you in advance.
Do you see the glass as half empty or half full? I say, what difference does it make--I paid for a full glass,so either way I am getting jipped!!!
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.
You ladies go right ahead and vent. I'm very thankful I have support and most folks understand my being unable to do alot of things. I hope things get better for both of you!!! Life is hard enough without all the garbage you've been thru. Bless you both!
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
P.S. I know how you feel, asking somebody to be "your friend". It's like the little notes in school where the other person has to check the box!!!
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
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
