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Newbe Needs help

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Old 04-24-2008, 07:15 PM   #1
Join Date: Apr 2008
Location: B.P MN
Posts: 1
Oleander27 HB User
Question Newbe Needs help

Hello everyone, my name is Emily. I am new to this and had some questions about Fibro. I started having symptoms like what people describe, but my doctors wonít give me a straight answer. My problems started about a year ago with pain along my jaw line and neck then spread to my chest, shoulders, and back in 5 months, and now it hurts all over. The pain is strange and hurts to the touch and also very achy. It comes and goís but when itís bad I canít do much and I seem to sleep more than usual and I get a migraine. I have had joint pain in my hands, knees, and bad back pain for years, and every once in a while I get a numbness on the left side of my face and left arm, where I also get weird twitches. I have been tested for Lupus, Arthritis, Thyroid, and
MS. These are all normal.

I hate going to the Doc. I always feel like they donít believe me. I donít know what is wrong with me and I would love some answers to why I feel this pain. If this doesnít sound like Fibro, I would love to be pointed in the right direction. I have 3 children and the youngest is two. He is a tough little boy so itís hard to play with him sometimes and it makes me feel so bad when I have to tell my kids ďsorry mommy isnít feeling so hot todayĒ . I need help and the meds they keep giving me just make me sleep. Muscle Relaxers, Naproxen, and sleeping pills donít even cover it up.

Other info about me is that I am Bi-Polar 1, with depression, and was taking quite a few meds. I didnít like the way they made me feel so I donít take them anymore. I have been doing ok with things on my own and working through the mood swings. My kids and husband are a big help and are great at understanding when I am manic and stuff. I am not sure if any of that has to do with the pain I feel but I hope it helps to understand me better.

Thanks for everyoneís time reading this. -Em

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Old 04-25-2008, 03:04 AM   #2
David 12321
Join Date: Feb 2008
Location: Milwaukee, WI USA
Posts: 62
David 12321 HB User
Re: Newbe Needs help

Do you have a good therapist? If you are dealing with both fibro and bi-polar disorder you really need to have a theapist. I'm very careful not to tell other people how to deal with their challenges but this must be an absolute *****. If you have bipolar disorder and fibro and don't have a good therapist, you are asking for trouble. Just my opinion but I'm pretty much positive I'm correct. Good luck.

Old 04-25-2008, 04:18 AM   #3
Senior Veteran
Join Date: Jan 2002
Posts: 2,365
AnnD HB UserAnnD HB User
Re: Newbe Needs help

What you are describing sounds a little more to it than Fibro. I do hope they find what it really is before you end up with the Fibro is a diagnosis that you would get after you have had it a year or two and it is still there. It is a diagnosis that you get when that doctor has exhausted his brain...that they have ran all the test possible and then some and have tired a few different medicines. If you are not going to a clinic or doctor that specializes in this diagnosis then I would seek a Rheumatoidologist doc or clinic for a second opinion. Don't be too quick to settle for the Fibro diagnosis because it is like that's it ...there is no treatment and pain medicines don't help the pain. I am so hoping that they discover what it is before labeling you with Fibro. It is sort of the diagnosis that you get when nothing else makes sense and all else has been tested and all meds have failed. But from what you describe just sounds like there is something more to this. good luck.

Old 04-29-2008, 01:40 AM   #4
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Join Date: Apr 2008
Location: Newark, DE, United States
Posts: 18
MissGulch HB User
Re: Newbe Needs help

I think you need to see a pain specialist and maybe a counselor, as you have a lot of issues going on at once.

I not only have fibro, but I have had myofascial disease for 15+ years and it is not the same thing. I have ropes of knots just about everywhere at some given time, I work them out, but then some place else starts. If I had a choice between the two the fibro is the easiest one for me.

Most of what I've read on people with fibro is that they don't sleep right anymore and you seem to be able to sleep, that is why I'm wondering if you have the myofascial disease and not fibro.

I have the shoulder, neck thing with the headaches too. These headaches are not migraines. Migraines are chemical. Mine come from muscle spasms pinching on the occipital nerve behind my left eye. You should try to see a pain specialist and try trigger point injectons, nerve block or ablations. I did these things for years and finally they didn't help at all. A year ago I had 2 leads put into my head and they run down to a battery pack in my lower back. I keep this stimultor on 24-7. By the pulsing it sort of short curcuits
the occipital nerve and I don't have constant headaches. Once in a while I get one that not even this stops, but it has helped a lot.

You can have a spasm in your neck and or jaw and it's very painful, it can also make you feel like you have toothaches, but actually don't. I've learned to break up a lot of these spasms with a tennis ball. There is a book that is a survival manual, it shows trigger points and where the refered pain is.

I stretch on one of those big exercise balls all the time, If I didn't I'd be screwed

You may find that a massage may be helpful to you. Myofascial release is good, but I prefer deep tissue massages.

Sometimes medicines take a while to get into your system before you can see how they are working for you. There are medicines that you shouldn't abruptly stop.

Read all you can and arm yourself with information. You can type in pain specialists that deal with fibromyalgia on your computer and you should be able to find someone in your area. Try to be assertive with your doctors and stand up for yourself. If a doctor doesn't seem to take you seriously then keep going until you find one that will. Even if you feel horrible try not to whine and complain too much. I have a friend that did that and some of her doctors dropped her as a patient. She had a pity-party all the time. It's okay sometimes, but then you've got to get on with things. When you have these diseases you're not going to be 100% pain free. After taking my advise she now has a good team of doctors that are willing to work with her.

I'm a bit over 50 and I can't imagine having this with small children. Sweetie, there's a lot of good information on this site, put it to use. You will be in my thoughts.

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