Welcome, and nice to meet you! You've come to the right place. There is a lot of cumulative experience here to draw from. Feel free to ask questions, or just hang back and read things as they come along. For many of us, this is also a good place for some daily social contact, in the "check-in" threads posted every day by the member Leo.

Getting the fresh diagnosis can be very tough - having to wrap your head around the word "chronic" is a process that comes with a lot of grief. It's normal and in my experience something doctors don't seem to warn about. So it's okay if you have some moments of depression, or anger, or just a nice shout of "why me?!" We've all done it, and we all still do it on occasion. This is a great place to vent feelings like that in an environment where people fully understand what you mean and what you feel.

Welcome again!

Ditto Sonya, and welcome! I'm a veteran of this site and of Fibro, and can attest that having this site is a blessing. Somewhere to go and say, "Fibro headache, gah!" and nobody asks what I mean!

Grieving is absolutely normal, and so is wondering why there's no "better" treatment, an dso forth. Trial and error is usually how we find our individual "best" therapies for coping and pain relief.

Join in on check-in (I post daily, keeping up the tradition of check-ins begun way before I even found DS years ago), or lurk, or vent, or whatever. We chat, we don't chat, we rant, we don't rant, whatever.

Cheers!

Good morning and thank you everyone. I went to the doctor for my follow up yesterday. I've started not only having pain in my legs (its where the problem started and is the worst) but im starting to have pain in my hands and arms. The doc said to try doubling my meds (Gabapentin) once at night which i was already doing and once in the morning. So when i got home i took one and by 5pm when it was time to pick up my son I felt weird, sort of off. I've concluded that it would not be best to do a dose in the morning and get behind the wheel of my car to go to work so ive asked it i should double up at night. I broke down a bit at the doc because it was my first time thinking about the "Why". My attitude since finding out has been, it is what it is and keep it moving. Its a challenge but im glad i found this site. Sorry for the long message. ;-) Have a great day everyone

With a lot of meds, side effects like excessive drowsiness or stomach problems tend to subside as your body adjusts to having a new level of a certain substance. It is still good to evaluate and advocate what you know works for YOU. Side effects and symptoms are not equal for everyone, and some doctors will try to tell you you're wrong somehow just because a symptom is atypical. After you've given something a fair try, you are the only one that can evaluate if something helped, harmed, or did nothing for you.

Do try to listen to your body when possible. While the fibro means we often don't like what it has to tell us, ignoring our body signals will unfortunately result in the symptoms acting up even more. Fibro is like a very annoying sibling that only gets more annoying if you ignore it, so we all just try to work out the balance between keeping ourself and this unwanted "sibling" as happy as can be.

And no apologies for getting the things off your chest that are bothering you! This is a safe space for that.

Good everyone. I hope everybody has had a blessed day! Well o took my double dose of meds and had planned to do a light workout but got sidetracked and now it's bed time lol so I'll know in the morning (or in a little while)how it affected me. I'm doing some stretches now which also helps at night then I'm turning in. (I'm an early bird). Have a good night all

Welcome! I am a fibro newbie as well and this site is great. Everyone here has been where you are and can help all of us keep living life!

Hi, thank you and yes they have been. It's really great to have a place where you can come and get support advice thoughts etc. I am truly thankful

Been trying to go to sleep for the last hour but my legs are aching and cramping so bad. I'm so sleepy but have been tossing and turning. Praying that the pain subsides soon so I can fall asleep smh

No idea what your spine is like, MsJai2016, but some of us rely on foam toppers or special mattresses to help us get comfy.... And, of course, I go to bed smelling like a muscle rub factory exploded on me! (Hey, if I can *get* to sleep, I'm so tired I stay there!)

Good morning, I may definitely need one of those. The doctor said it may affect all parts of the body including the back. This morning I am feeling BLAH. The effects of doubling up, im feeling it today and it doesnt feel good on top of the fact that my legs are bothering me more this morning. I dont think i am going to double up and i'll stick to my one pill at night at bed time. I do not like feeling like this at all. They're going to have to do something else...

Welcome to the group MsJai, I'm sorry the meds aren't helping. I found they made my pain worse when the pill was wearing off, and I had to keep increasing the dosage to get any relief, but then I was in a coma state and it was pointless. I can't function on the meds so I rely on heat a lot to soothe my aches and pains. I hope you find some things that work great for you. I'm also like Leo at bedtime, the only way I can fall asleep is with lots of Stop pain rub and icy hot on my back and neck, and a heated spa bag on my feet. All of my pain originated in my feet and legs, and then to my hands and arms, and now everywhere. I hope you find something that helps.

Thank you twinmomab, I refuse to feel like i am coma bound! But i will get some type of icy hot or something for my back and I had not thought about heat on my legs. My most pain is in my legs and recently im starting to feel it in my hands and arms and Im going back to 1 pill at night and will email the doctor about alternatives.

Question, upon doing research on Fibro, some say no one knows why it happens and other research says its due to overactive nerves caused by physical or emotional stress. I am not emotionally stressed (until now LOL) and physical stress? I've be active all my life and have worked out off and on for years - could it be because i've always been active and worked out? Its totally crazy to me thinking of the why is this happening all of a sudden out of the blue. Ok perhaps not out of the blue because i started having leg pain last year but then it was my b12 was low but the pain never went away and no one thought of Fibro until a few mths back when the pain started waking me up during the night....

The unanswerable question: Why does a seemingly innocent event (an infection, an accident, a minor vitamin deficiency) suddenly cause this huge system-wide failure?
Nobody knows. Theories abound, here and in research, but most are either unprovable without better medical testing equipment (that can see our molecules) or are anecdotal or, and this is of course my favorite, are based on crappy studies and so have questionable results. A famed study claiming it was an infectious agent? Turned out to be BS b/c the study samples were all contaminated due to improper handling and procedure. (I was pre-med, I tend to nerd out at this stuff.)
Over the years, we and the scientists have concluded:
1. Underlying cause/agent is as yet unknown and may vary from one to another. Before you say that's bullshit, consider that a headache is a symptom of brain tumor, concussion, sinus infection, tension *or* bad eyeglasses. ONe cause does not fit all, despite the *symptom* being the same.
2. Genetic components are possible, but which ones, and why? DNA isn't an on-off switch. Genes affect each other. Some claim it's familial, others don't.
3. Gender bias has led to overdiagnosis or misdiagnosis. Assuming it was psychiatric for, oh, ever.... docs also assumed it was a *female* disease. Men who are dx'd are becoming more common not b/c of the disease but b/c the docs finally clued in that we gals didn't make this up, and also, male pain reports are initially treated more seriously by medical professionals. Thus, if body stress can trigger fibro.... men are more likelyt o have their pain treated aggressively than women. You can find the studies on that *all* over the place, and my own male rheumy (who has fibro and dx'd me) admitted it outright.
4. Fibro is classed as NEUROMUSCULAR. Now, biochemistry is sticky, tricky stuff. I have epilepsy. Why? I dunno. Nobody does. SOmething is awry on such amolecular level that science can't point to it (yet). Nerves and neurotransmitters can be affected by exposure to toxins, stress, trauma of injury, trauma of emotion, etc., b/c all that affects.... your basic chemistry. Sometimes people rebound okay. Sometimes, they can't get outo fhte loop. Meds can break that loop for some, ranging from the new standards (Lyrica, Cymbalta, Savella) and relative standbys (gabapentin) and/or ainkillers (good luck with finding one).

;5.*MANY OF US WERE ATHLETES* Or devoted ot daily, healthy, regular exercise. I hate to shout, sorry, but *stop* right now thinking it's about fitness one way or another. When it comes to fibro? That's crap. Total crap. Lance Armstrong, minus doping, got a form of cancer, remember? Lou Gehrig got ALS, and his name is still on the disease, and he was one of the great athletes of the first half of the 1900s. And so on and so forth. Point is, I wa smanaging fibro well, and was even in "remission" (so to speak) for 8 years, minus meds, with no more explanation for that than for why I have it, or why it flared back. (Actually, in my case, severe stress triggered a flare and then I suffered a severe injury, so I'm back in teh loop, dang it.) I still exercise daily, if not as intensely (ouch!). Many fo us do. It's to keep up our baseline health, so we can avoid *more* trouble. (Or try.) For some, gentle daily exercise is part of fibro treatment. For others, it's just our sanity. (Me!) Being athletic didn't give me fibro, or save me from it.

6. But, that said? TRAUMA to a body, or repeated trauma, can simply burn out your body's recovery cycle mechanisms, if there's never enough true recovery time. That is one reason athletes can end up in deep poop, but also why stress or injury can trigger FM. We're encouraged to "no pain no gain" and 'push through it' and so forth, but doing so actually damages a damaged body/psyche. Result: No rest and recuperation from the stressor, and the body just gets *stuck*. So why'd your legs hurt "out of the blue"? Did they check your spine? Circulation? Vitamin levels for critical electrolytes? ... ANd did you ever get a recovery from it?

7. And that leads to.... we're exhaustively tested to rule out everything else, but docs don't think of everything. Celiac disease can cause fibro symptoms and also dementia symptoms if severe enough malnutrition occurs.

8. And that leads to.... My Theory. (Everyone else will groan and duck, btw.)
Why do treatments never seem to work for more than 1/4 to 1/3 of fibro patients?
My theory? Because fibro, as a disease, is actually going to someday be shown to fall into "types", probably with different causative factors, and then get renamed and all that fun. But until then?

This is what we have, and it's a lot better than "women make crap up to get attention", which I heard back in 1995.

CDC, World Health, et al., reconize it as a neuromuscular disease that can be managed with medication, lifestyle (diet/exercise/stress management/etc.), and if necessary, gee, actual *painkillers*!

One of the dangers is that it's not going away. I found that out. Figured I had it "beat". Got stuck in the stress-no-rest-pain cycle, couldn't break out, and whammo. Back to square one. So sometimes people get great control over symptoms, but something can change. Hormones? Astrology? Dang if anyone knows.

Hope that helped!

I neither groaned nor ducked at number 8, Leo! I agree, personally. Such consistently low efficacy rates across such a wide range of medications means something to me. If they keep pouring research into it, I'm convinced differences, however small will present themselves among the patients with differing responses to meds. You have support here. :)

And to MsJai, I second all of the above, and I think it's very wise that you're remaining critical of medications and whether you are happy with the results. Hope you're having a low pain day!

Totally agree as well. I too heard that back in the day they deemed it only to be in a woman's mind. I know for a fact that the pain is not I my mind.