feeling a little lost right now

Hi jas, I'm sorry you are feeling so bad. I hear you and want to send positive vibes and hugs.

It's hard to believe that this condition is so poorly understood and yet it has such devastating effects on people. I'm planning on donating my body to science! Specifically for Fibro research. Can we even do that?

I had a hellish week, after attending a morning medicare insurance seminar for my parents. Then I tood my mom out to dinner. That threw me into a flare, EXACTLY like you are describing. I could hardly function. I rested, rested, quit a working gig, rested. Finally started to come out of it on Sunday.

I've written a note, kind of a love note, to myself in my Fibro Toolkit. about how I'm feeling "now", that I survived "then", that by resting, I'll come out of it. To Hang on. I don't have my daughter nearby anymore, and she'd kind of be around or helpful, make me tea, and put on Netflix comedy movies. and that kept my downward spiral from going so... Down. Do you have anyone who can hold your hand, per se?

We're here for you too. (((Hugs)))
T

Post Edited By Moderator (Sherrine) : 10/5/2015 11:03:22 PM (GMT-6)

Hi tangodancer... thanks for hearing me out... I guess I do but no one really gets it.. and im sure mg love ones get tired of hearing it even though theg dont show it. Its tuff and yes I have felt like just wanting to die already ... I pray alot ... it gets me through mentaly

Hi Jasflower,

Sorry to hear you're doing so poorly. I, too, visited several kinds of doctors to no avail. What has helped me lessen my pain and tightness is a combination of good diet, my cranial facia massage therapist, my PT doctor who helped my extremely tight pelvic floor muscles, exercise along with stretches, and good supplements.

When the conventional doctors can't get it done for us, sometimes it's the right thing to do to try alternative.

Good luck to you.

Post Edited (almost medfree) : 10/6/2015 3:37:22 AM (GMT-6)

It's true. EveryBODY is different, as are our circumstances. Medication for a chronic condition can only be part of the solution, and can sometimes cause other problems. In order to maintain some sense of normalcy, you have to discover and then develop a self-care program. Over time, this will change as you change.

I *think* that it takes roughly a year to discover what works and what doesn't to help you feel better. Yes, it's so frustrating and it's hard to accept feeling bad for such a long time. But this condition is for life, at least until they understand more about it. Most of us have other conditions or life circumstances that vary our treatment significantly. Eventually, you will learn the limits of your body and the behavior that brings on a flare. Researchers now call this “post-exertional malaise."

I manage my condition(s) through a combination of medication, schedule management, and healthy lifestyle. I work, and am still fairly young (mid-40s) and was diagnosed in my early 30s. I am one of those with other diagnoses which complicate the situation. The main medications I take for fibro are tramadol with small doses hydrocodone used as breakthrough meds, a muscle relaxer, and generic ambien. I tried to wean myself off of the ambien with my doctor's okay, but the attempt didn't go very well. Diet and exercise are my main go-to lifestyle choices. I eat a specific diet as part of the maintenance plan for Ulcerative Colitis. I go to the gym 4-5 times a week, and have worked up a good routine that is cardio-driven as well as low-impact.

One thing I wish I had done when first diagnosed was keep a journal with medications tried, dosages, supplements tried, dosages,and behavior that precipitated a flare. It would be very helpful in the long run.

Jasflower, sounds like you've been through a lot. There's a very good book that I read by the character on the Walton's who played Erin. She had ruptured breast implants and she's been proactive along with other women to bring their attention the toxicity of implants.

I'm not sure if I can mention her name or the name of the book in here. I tried it once, and my post was deleted.

Hi inspiration yes I've had an indoscopy this past July and a esauphogrram That showed that I had some acid reflux. But the dr for endoscopy said I was fine but then when I got the report I read that it said mild gastritis...I do take dexilant when needed ... But I really think it's costochondritis.... I m going to check with at cardiologist and a pulmonary dr I have already seen a heart dr and test were normal but sometimes I start to think it's my lungs ... Is wiered. I'm average weight and don't smoke .... It must be muscle spams but I'm still going to keep ruling stuff out. Might as well since I m actually blessed with great insurance my husband is a Longshoremen. So I was blessed to be able to start my journey for answers

Hi sherrin... I tested for Lyme 3 time. Very early I test negative. Then 6 months later it said I was exposed to 1 band 58. But still considered negative. Then test again 3 months later and said negative didn't even show that I was exposed to anything.... I'm wondering if I should pay all that money to test with Igenex lab. All my Drs say I do not have Lyme even my infectious disease dr says I do not gave it .... But when I go on the Lyme forum they say I should test with igenex. It's so much money to text I would hate to text when my team of Drs keep telling not to waste my money. But I went ahead and ordered the test kit anyway so I'm going to decided then one else it gets delivered to my house