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Is this JUST ME?
And if I'm not some freak of nature that can detect the change in the barometric pressure, then - what do any of you do when the pain hits you. If you're like me then you understand that THIS is not the USUAL Fibro pain... this is... I can't even describe this pain. This is torture. And there's nothing I can do about it.
Can anyone help?
AlixView Thread

I'm sorry to hear about your uncooperative doctors. You can check the website on Vitamin D and it will tell you ALL the things a Vitamin D deficiency is believed to be linked to. It also explains WHY. People have become SO Afraid of skin cancer that they now do everything to avoid the sun. Products contain sunscreen, glass is coated with UV blocking technology - even in our cars. And the BEST way to get vitamin D is from the SUN. The supplements are GREAT but they still aren't AS GOOD as 20 minutes a day in the sunlight. The body produces two types of Vitamin D - 2 and 3. It's D3 that you NEED. If you drink 'artificial' milks, CHECK THE LABELS because not all of them have D3 - some of them actually have D2.
As for your physicians, If they refuse to do what you want or if you feel that you are not receiving the care you deserve you have options. You can "Fire" your doctor and get a new one AND/OR you can FILE A COMPLAINT AGAINST THEM With Your State's Licensing Board. READ THAT AGAIN!! There IS Such a thing as "Poor Bedside Manner". It is a legitimate complaint. The reality is that you will probably receive a letter in return stating that the State investigated it and found that the physician didn't do anything wrong - BUT, it will be in a PERMANENT FILE and the State WILL know about it. IF EVERYONE were aware that improper behavior of physicians could be reported, we'd have better doctors. Your ONE complaint may yield NOTHING - but if the Board receives 10 identical complaints from 10 individuals, they'll realize that they have a problem with this physician that needs to be addressed and they WILL Address it!
And I know - Because that used to be MY JOB before I could no longer work.
I'm now a full time student, majoring in Criminal Justice, and hoping that by the time I graduate, I can get a handle on my Fibro and pain and be able to go back into Investigations and Enforcements.
NO ONE should have to put up with a Physician who treats them like crap. Find one who gives a damn about you. You'll be amazed how many are out there.
Good Luck to you.
AlixView Thread

My GP is AMAZING and has been doing everything she can to try to help me manage the Fibromyalgia and she's got a good head on her shoulders as well. I trust her completely, I really really do. But nothing is working.
I am now considering looking into maybe a Rheumatologist. What is your opinion and what suggestions do you have for finding one who is highly knowledgeable in treating Fibromyalgia. Or, do you have any other suggestions? I have already been the route of a pain management clinic and all they did was throw tons of drugs on top of drugs at me, nearly killing me due to drug interactions. I refuse to go that route again - And by the way, none of the narcotics or muscle relaxers helped with any of my pain.
I'm just very frustrated and tired of feeling like my life is on hold or at best, spotty. I'll be 40 in a few weeks and I'll be graduating college in a year and my biggest fear is that I won't be able to get a handle on my Fibro by then and therefore, I won't be able to hold down a job once I finally get my degree that I've worked so hard for. It will all have been for nothing. I need to find a way to gain control over my body instead of my body controlling my life.
Please help?
AlixView Thread

Just curious, but I have a reason for asking.
AlixView Thread

I wish you the best and I hope you start to feel better soon.
AlixView Thread

If you're getting no results from calcium, start with checking your vitamin D3 level. Calcium won't do you any good if your D3 level is low. Your body won't even absorb it.
Best of luck to you.
AlixView Thread

And, I'm not the Physician here.. but I wanted to say that years ago, when I was first diagnosed, I tried Savella for a while. There were only a few reasons I didn't stay with it for long. However, what I wanted to note was, when I tried it, I had NO side effects and especially NONE of those. As a matter of fact, the only thing I DID notice was that while I was on Savella, I didn't have a SINGLE headache the entire time. Not ONE! At the time, every physician I mentioned this to told me I was crazy and didn't know what I was talking about because Savella 'isn't a migraine medication' but at the time, "Fibromyalgia Headaches" were not a 'known symptom' either.
I hope you either got over the symptoms VERY quickly or, what I personally would have done or suggested, got OFF the Savella. And, Unfortunately, I didn't find that Lyrica did anything for me either. I understand your frustration. I'm so sorry. I hope you're feeling better now that some time has passed.
Good Luck and Best Wishes,
AlixView Thread

OR - at least, in my case, that's how it is for me. What we've been able to figure out is (Because Fibromyalgia is a 'blanket term') I have a breakdown in communication in the neurons and when they get confused as to what message they're supposed to be sending/relaying to the brain, they automatically default to 'pain'. So, Luck for Fibro people, huh? Couldn't be a feeling of euphoria or strength or mental well being, hmm? No. Pain. So, a medication designed to lessen physical pain or dull the senses will only dull the senses. It basically just makes you not care AS MUCH that you're hurting so badly.
I'm not trying to be negative or rain on your parade - I'm trying to give you realistic facts. Massive dosages of multiple pain medications - LEGALLY PRESCRIBED by a pain management physician at a Reputable Pain Management Clinic - almost killed me. I know it sounds dramatic and exaggerated but, please believe me when I tell you it's not. If you find that the pain killers are not working, as I'm saying - PLEASE, just accept that they aren't going to and discontinue them? Why put something in your body that isn't going to do any good? Don't we suffer enough?
I've been at this for so long now and looking for answers and solutions for so long now.. I just want to help people - Especially if I can spare them my mistakes.
Best,
AlixView Thread

Now, on the other end of the scale, I do have a tremor. It is always there. It always has been. Sometimes, it almost seems like it's not. And sometimes, it's so bad that I cannot write. I have found that for me, my pattern/trigger is stress - Pretty much like everything else with Fibro. The more stressed or anxious I am, the worse my tremor is. The last time I check the 'symptoms list' for Fibro, tremors wasn't on it - but when I was originally diagnosed, "Chronic, widespread pain" was pretty much the ONLY symptom. Years later, all these unexplained 'symptoms' I've had FOREVER slowly get added, one by one, to the list of Fibro 'symptoms'.
As for flexeril, I know that everyone is different AND... Please NOTE: **my body has a tendency to react very oddly and unusually to chemicals - reactions that MOST PEOPLE DO NOT HAVE.... but, I cannot take flexeril. It makes my muscles crawl... it's absolutely horrible. I can't sit still. I want to claw the muscles in my arms, just under the skin, right out to make them stop twitching and jumping and... UGH. I can't stand it.
So, think about when the twitching started and think about "Is it worse after taking flexeril?" And like I said, that may just be ME because I have a family member who takes it and it works like a CHARM for them... but maybe it just isn't a good drug for people with Fibro?
The BEST thing to do is talk to your physician. I have not found ANY pain medications that A.) Make ANY Fibro Pain Go Away or even lessen. I'm sorry. Good luck. I hope you have better luck with that. All I find is that it's good for dulling the senses and, if I'm lucky, maybe I can pass out asleep for a while. Usually, when I wake up, I'm not hurting anymore or I hurt less. My personal assumption on this is that it also affects the neurons and makes them 'reset' so they're no longer sending the mixed messages of 'pain pain pain!' to the brain - but that's just what I, personally, think happens. However, My physician DID put me on a Beta-blocker for the tremors when they were really bad at one time. The trade off is that it makes you pretty tired and sluggish.
I wish you the best of luck.
Best Wishes,
AlixView Thread

Yes, I often feel the helplessness and frustration. I'm a full-time Student and disabled and a single mom to an 11 year old - at the age of 40. I never know when I wake up in the morning if it's going to be too much for me just to make the 45 minute drive to campus much alone go to classes all day, study, do homework, take exams, cook dinner, clean the house, do laundry, spend time with my child, and on and on... I never know when I won't be albe to sleep for 3 days straight or when I won't be able to stay awake no matter WHAT i do. I can't make plans in advance because I don't know how I'll feel that far down the line.
Yes, some days, I get SO despondant that I think MAYBE my daughter would be better off with someone else and NOT seeing me like this - when I'm having a bad Fibro day; when I can't get out of the bed; when I have to tell her she has to hug me gently, I hurt; when I'm short tempered because every inch of me is exhausted and in pain - how fair is THAT to an 11 year old of a single parent?? But how fair is it to leave her?
So, I'm in school, working on a degree and trying to stay optimistic that once I graduate, I'll be able to get a job in the Field I already have experience in, that I'm good at, and maybe, with understanding, there will be a way to work out a schedule AND in the meantime, I'm working on trying to find a way to cope with my stress, depression, and pain in natural ways instead of popping pills for the pain. (BUT, I DO take anti-depressants and I do see my regular MD and my mental health MD regularly - who know each other and approve medications mutually and I comply with treatment - AND I see a therapist/social worker). The first step is the Depression. I *PROMISE* You - It makes EVERYTHING 1,000 times worse than it REALLY is. So, one step at a time. Get your depression under control FIRST. Work on that. It's a really HARD step, probably the hardest, but the most needed one and the one that will make the most difference. And remember that people are HERE (And There) For you.
Good Luck
Best Wishes,
AlixView Thread
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