New to Fibromyalgia

Hi, Becca -

Welcome to the Forum. You've definitely come to the right place! Whether your symptoms ultimately turn out to be caused by Fibro or something else, we are more than happy to help you figure it out, listen, chat, and commiserate. We've all been there, wondering what the heck is wrong with us, that we have all these weird symptoms, many of which seem to have nothing to do with eachother. It usually takes several doctors, lots of tests (many or all of which you've already had) and often years of feeling like we've lost our marbles ;) before we get this diagnosis. I was so relieved to have a cause, and the assurance that a doctor I respected actually believed what I was telling him - and that he could help lessen my pain and fatigue!


Of course, the fact that there's no cure is hard to come to terms with, and there's a period of actual grief that comes with the territory. Unless science comes up with something new (and we're all hoping it will) we will never be able to do everything like we used to, to push as hard, or go as long, but as this doctor still tells me, "Sure, you're healthy - you just have a bunch of stuff that makes you miserable." The ceiling is lower than it used to be, plain and simple. But it's not fatal, and they don't believe it is, in and of itself, progressive.


First off, if you haven't already, check out "Fibro 101, the 2nd thread on this forum. It has so much helpful information, everything from a LONG list of possible symptoms, to "What else could it be?" to doctors' weighing in, to how to deal with ignorant loved ones....it's a real eye-opener.  It also has some gentle exercise ideas, which is very important.  It we are too sedentary, our bodies become more stiff and painful...it's always a matter of finding the right balance.  


Now, to address your specific concerns: I'm just going to speak for myself, since we all have a different combination of symptoms - 1) I, am also worse at night - my pain, that is - but I also tend to wake up then and putter around the house, and fight going to bed...go figure!? 2) Hot baths or showers do sometimes cause all those symptoms in me, if the water is hot enough (and of course, that's how I love it!) ~ except for the rigidity...I've never experienced that. 3) I don't know anything about Lorazepam with Lyrica, but if I were you I'd Google it and see what the consensus is. Of course, doctors don't always stick to those guidelines. But since you're looking for a new doctor, I'd personally hold off on the Lorazepam, since the Lyrica is helping some on its own. 4) Chinese Medicine, and accupuncturists, have such a different way of interpreting the body's signals - the one I used to go to told me that all my problems stemmed from my liver, and sure enough, Western doctors found I do have elevated liver enzymes, for some unknown reason....so who knows??

Ideally, I'd like to see them all work together, combine their disciplines - but that's so rare (sigh) ~ oh, for a perfect world! ~ Hope to hear more from you, and I'm glad that all your tests came back normal and you don't have MS, anyway.

Debbie

welcome

Thank you fo all of your warm welcomes and helpful input.

Hi Debbie- I'm glad to know I'm not going crazy with the hot bath situations. I am a psychologist so sometimes I fear that I have become a hypochondriac or have developed a somatic disorder. I read the Fibro 101 as you suggested and have about 3/4 of the symptoms listed. One thing that does not seem to fit is that everything I read says that Fibro does not progress or become worse over time, however my symptoms have been gradually increasing over the last 3 years and affect primarily the right side of my body. I also agree that it would be a better world if different health professionals could work together. I had a situation before I was diagnosed where the rheumatologist said it was neurological, the neurologist said it was rheumatological, and my primary care said it was psychological, ugh!

Hi Karen- I feel you about the fatigue. It's not so much that I feel tired, but my muscles feel tired. I have been trying to do pilates (in my living room, not a class) to help stay fit, but sometimes after a couple minutes of gentle exercise I feel as if I have run a marathon. What I don't understand is that despite my lack of activity, I keep loosing weight.

Hi Sherrine- Thanks for the suggestion on the supplements. Currently i am only taking a multivitamin, D3, and magnesium. Do you have any suggestions about the dosages? I do need a new pharmacist. This one is . The one thing that none of the meds i have tried seem to help me with is this weird feeling that starts in my right leg (mixture between restless leg and muscle weakness) which then spreads to my right arm and right side of my face (jaw pain, pain around my eye and a headache). The weird feeling then progresses to the entire body and I start to have difficulties breathing,a dizzy drugged feeling in my head (like after you take a sleeping pill) and cannot move. If this doesn't happen, the weird feeling turns into pain and aches. I actually prefer the pain because my heating pad helps with that. It's a scary feeling that happens just about every night and really limits any type of social life. If you have ever had anything similar or know what might help, I welcome the ideas.

Thanks again for your input, I am hoping all of you have a pain/symptom free and enjoyable evening. I'm on the couch with the heating pad, but my cat really enjoys the opportunity to cuddle with me.

Becca

Becca, I took out the name of your pharmacist.  That could spell trouble for this site.  Thanks for understanding.

 

Sherrine

Post Edited By Moderator (Sherrine) : 4/23/2012 6:44:41 AM (GMT-6)

Becca,

You mentioned that most of your pain is on your right side - I have that too, but mine is on my left. One-sidedness doesn't fit any list of symptoms that I've ever read, either.

After having just had lumbar disc surgery, though, I'm inclined, maybe wrongly, to attribute a heck of a lot to the mystery of nerves. How a ruptured disc in my low back could cause NO pain in my back, but agony from my butt all the way to my toes, is so weird!

For 20 years or so, increasingly, I'd wonder how all my pain emanated from this little spot to the left of my sacrum....no matter what muscles I used. (It never felt normal, and I was always aware of it...it felt at least tight and numb, and the possibilities just went downhill from there.) That's where the disc eventually ruptured. I still can't get a doctor to say for sure that yes, I was feeling it long before it happened. Frustrating.

I know that's not the same as what you're feeling, specifically, I'm just wondering if the pain is eventually spreading throughout your body due to nerve involvement of some kind. Of course, I really have no idea, and it does sound like it could put a damper on your social life!

So you're a cat person, too....I have one who normally loves to cuddle (although these days he's not mingling with us OR the dogs, and I really miss him. I'm afraid he's just getting too old....very sad.)

Debbie

Depression is a common problem in human being. I know a process to release depression. TMS center, is a board certified psychiatrist specially trained in the use Fibromyalgia