Hi,

Question: Do you have pain, i mean really severe back pain with fibro? My back has really been hurting and getting much worse, but, its not the muscle pain you usually associate with back pain. This feels like its the spine itself. The pain runs all the way from under the neck to right above the tailbone area. Midway is where it gets really bad where i break down and start shaking from the pain. Im wondering if this is part of what everyone with fibro has to endure?

Jen

I can say yes, i do , and it usually feels like the bone itself... not much help I know....

Hey Jen,

I actually wanted to post something about this phenomenon to see if anyone else experiences it.. Yes, I definitely get it.. And the middle of the back is the worst.. It feels like it's in the bones themselves & there's nothing I can do to alleviate it (although taking my ketoprofen sometimes offers relief - maybe it's caused by inflammation?)..

The weirdest thing about it is that I've come to equate that particular pain, especially the middle vertebrae pain with flares.. When I feel really bad, the pain in the middle of my spine is so concentrated that it literally makes me nauseous (and considerably lessens my will to live).. It's awful!

I just figured it was due to the auto accident I was in 10 years ago.. I had injuries to my cervical spine, the middle of my back and my lower back, but this pain is different than anything else I've ever experienced.. It's almost as if something is gnawing on my bones from the inside..

Anyway, thanks so much for posting about this.. You are definitely not alone & I guess I'm not either.. Do you notice an increase of pain with flares or is it constant for you? My back always hurts, but it usually doesn't become unbearable bone pain unless I'm having a flare..

Take Care,
Melanie

Hey Jen,

Another fairly strange thing that I forgot to mention is that it's a pain I can't adjust out.. I can pop most of the bones in my back (and my chiropractor doesn't discourage me from it because she knows I'm in pain and that my spine is constantly out of alignment), but that middle bone isn't poppable.. I guess it's just another clue that the pain isn't normal..

Take Care,
Melanie

Hey Melanie,

YES!! It gets much much worse during flareups which is where im at right now. Not even if i double up on my lortab and soma PLUS the ultram does it go away. It feels like the bone itself is being broken over and over again. The middle part of the back is the worst of all.

Yea, it always hurt, but not like this and nothing i do relieves the pain. I have an appt next week, july 1st, with my doc, and thats one of the things im bringing up to her. I have my hubby massage it and doesnt help, about the only thing that relieves some of the pain temporarily are those homeopathic oils my sis rubs on them (layers them actually). I buy them online for her , shes all into that, but, hey im beginning to think there might be something to that. But theyre soooooo expensive, i have her put some on only when i cant absolutely stand it. But even that only lasts maybe about an hour at the MOST.
I HATE THIS FIBRO thing!!!!
Yes, the pain gets so bad it makes you nauseaus, moody, sends shivers up me, and makes me just wish i could close my eyes and NOT wake up.
Jen

Hey Corin,

YES, exactly, its the bone itself. Like Melanie asked, does your back pain get worse when youre having a flareup??

Jen

absolutely, when I flare, it can be so intense in that middle region of the back that I have difficulty breathing, and it spreads to the front of the chest (feels like it anyway). It makes me very grumpy, but it is so intense, and concentrated, walking and standing at that point is unbearable. I try to stretch it out as taught by my PT, but the pain remains, and it almost seems like my spine will collapse in that spot.

Hey Jen & Corin,

I guess we're not alone anymore (although I wish we could have something better in common like the love of kittens rather than bonecrushing vertebrae pain).. http://www.healthboards.com/ubb/wink.gif Jen, if your doctor does have any insight into the phenomenon, pretty please let us know..

I failed to mention it to my rheumatologist the last time I went, but I'll ask him about it during my next appointment.. My biggest problem with it is that it seems to hit me before I even wake up.. I can't sleep any more because the pain is so excruciating, but I don't want to get up either because it hurts so bad.. I don't get it as often as I used to because I don't have as many flares as I used to, but it's usually the first sign that I'm going to be very, very ill for a while..

I have never found anything that really takes it away either.. The ketoprofen takes a little bit of the edge off for about an hour or so (sometimes - sometimes it does nothing at all), but I'm generally still in horrible and unbearable pain.. It's definitely awful..

Take Care,
Melanie

Hi,
I have found that bluestuff (which contains emu oil and other ingredients)works wonders in relieving the pain in back muscles. You can buy it on their website. It is expensive, but the cheap knocksoffs sold in stores does not work (you get what you pay for). In Walmart, they sell these bright colored (orange & green) plastic applicators to apply cream on your back with. They are like $1.97 or so and they fold in half and when you open them up, one side has a flat sponge area that you put the cream on. It great for reaching your back when only you are around to put the bluestuff on.

Although I have a pain pump implanted for pain control, by the end of the day at work, my back is sore because my desk is very ergomically unfriendly even though my co. has had 2 experts come in and try to make me comfortable. I go in the ladies room and put my cream on (several layers work best) and within 10 min. the pain is either completely gone or at least 75% gone (depending on how bad the pain was to begin with).

Hope this helps anyone who has never tryed bluestuff and wonders if it works. P.S. If you buy it, get what they call superstuff because it has very little capsium in it and it doesn't stink like a "camel" like the bluestuff does.

Hey pixie,

Thanks for the info on bluestuff! Unfortunately, the pain we're talking about isn't muscle pain, it's actually bone (spinal vertebrae) pain.. I've tried almost everything to try to get rid of it - heat, ice, medication, topical creams, magnets, exercise, stretching, chiropractic adjustments - but nothing helps and it's gotta be one of the worst pains I've ever felt because it actually feels like it's inside the spine itself..

I haven't had much luck with many OTC pain relieving gels, so I might have to look into the bluestuff for my muscle related pains.. I know my chiropractor had this really awesome stuff called Biofreeze (I think) that seemed to work pretty well for me.. I'm not sure what was in it though, I just know that it made me feel like I had an ice pack on..

I also didn't know about the plastic applicators.. That's awesome! I never even knew they carried anything like that.. It would definitely help when my fiance' wasn't around and/or if I didn't feel like getting smelly goop all over my hands.. http://www.healthboards.com/ubb/biggrin.gif

Thanks for the great suggestions!

Take Care,
Melanie

Hey Melanie,

Yes, I'll be sure to let you know if my doc has any suggestions. It's true, ice, heat, hot baths, emu oil, blue stuff, super blue stuff, didnt work on it. That is what ive had to be dealing with this week on top of the rest of the pain. It gets so bad, i dont know if i want to curl up or stretch out, move around or just lay super still, but nothing works and its driving me out of my mind.

Hope you have a great weekend hon!!
Love and hugs,
Jen

Hey Pixie,

I see you live in deer park texas!!! I used to live in laporte and my hubby worked at the deer park post office for a few years before we moved to portland tx.

We moved out cause of all the pollution from those companies in back of deerpark and laporte. I do miss the area tho and my inlaws still live in laporte.

Thanks for the info on blue stuff. Ive tried that plus the super blue stuff. Like Melanie said, its not a muscle pain. Its deep in the bone itself, the entire spine and certainly feels like a crushing pain. It gets pretty bad enough to where you dont know what to do. Massaging it doesnt help because its not muscle pain. I wish i knew what it was. Im going to the doc next week and im going to make sure she checks it out and tells me her opinion on it. Im also letting her know it seems to be seen in other people with fibro.
Well, its hurting pretty bad right now, so im going to go lay down for a bit.

Have a great weekend hon,
Jen

Hey Jen,

I've honestly thought about getting a permanent marker, marking that particular spot on my back with a big X and taking a photo of it (just in case I'm not currently experiencing it when I go to the doctor the next time so I can show him exactly where it is)..

It's so strange that you can be in such concentrated pain, yet when it's gone, you can't seem to remember the exact location that it was in.. I'm not even sure the location matters, but it's always the same middle vertebrae that causes the most pain for me..

And you're right about the position problem.. No matter what you do - sit, stand, curl up, stretch out, be still, be active - it's still there and no position or level of activity seems to make it feel any better.. I really hope that your doctor can shed some light onto the whole matter.. And if not yours, we'll see if mine can.. I'm not due for an appointment for a few months, but I'll make sure it's one of the things that I bring up..

Have a great weekend if you can! I hope you start feeling better soon!

Take Care,
Melanie

Hey Melanie,

LOL, i thought of that same idea, getting a magic marker and having my hubby circle the area where its concentrated the most. The entire spine hurts, but its the middle part that KILLS me. He was against the idea and wouldnt do it for me, kept saying magic marker ink is bad for ya and im not gonna do it.

But then i thought of one of those little round stickers, lol, and on the day of the appt, Im going to have him put one on my back right where the pain is the worse.
Not doing much this weekend, mostly im resting and taking it easy. Oh i saw this video on yoga that is made specifically for back pain. I saw the name on one of the posts , not sure if it was yours or what. It listed yoga AM or something like that and the name of the guy who makes them. I checked the website out and there is a video that is just for people with back pain. Suppose to help with strengthing the muscles (although its not muscle pain for us), but i do believe my back muscles arent that strong and at this point i'll try almost anything. Will let you know how that goes.

Love and hugs,
Jen

Hey Jen,

I never thought of using a sticker! That would work too.. I've even got cute little heart shaped ones.. http://www.healthboards.com/ubb/biggrin.gif

I use AM Yoga for Beginners by Rodney Yee (who is an awesome yoga video instructor - he gives great voice and he's not too hard on the eyes either http://www.healthboards.com/ubb/wink.gif) & noticed that it helped strengthen my back muscles a lot.. I've also got a few new yoga, pilates and tai chi tapes that I still haven't tried..

Unfortunately, the only TV is in our bedroom and it's currently full of bed so there's no room to exercise in there.. I don't need to see the AM Yoga video to do it because I watched it enough before we moved here - I can just listen.. Starting a new exercise regimen would require seeing it though..

Definitely keep me posted on the back pain yoga.. Some exercise can be too strenuous for my temperamental body, so I generally stick with videos that have "For Beginners" in the title.. http://www.healthboards.com/ubb/wink.gif

Anyway, I'm not doing much of anything this weekend either.. I'm currently coloring my hair (which is more than you needed to know, I'm sure), but the smell is driving me nutty.. Thank goodness it's almost time to rinse it out.. http://www.healthboards.com/ubb/smile.gif

I'd better go do that before I start to gag.. Have a restful weekend!

Take Care,
Melanie

Hey Melanie,

Hope you had a great weekend hon!

Well went to the doc yesterday. Told her about the pain in the middle of the back. She "nodded" and said yes, most of her patients with fibro have mentioned severe back pain. She didnt explain "WHY" it happens tho, said it could be several things. She ordered xrays and t spine xrays but also mentioned surgery in the same sentence.

She said she was more than positive that one or more discs were crushed or collapsed and said it usually happens in the middle of the spine. She said it is not muscular, but the bone. I think i sorta tuned her out after she mentioned surgery http://www.healthboards.com/ubb/confused.gif Glad my sis was there http://www.healthboards.com/ubb/angel.gif and she filled me in on the rest.

So now just waiting on the test results and see what comes up. OH also mentioned I ordered the yoga for back pain (Rodney Yee , cause you mentioned he was nice on the eyes lol ) and she said she strongly suggested i try it depending on the test results. Shes a great believer in yoga and said to start slow and build up. Said it wont do anything to the spine as in heal it, but will strenghten the muscles around the spine and help it from getting worse. Not sure if thats all thats really going on back there tho. We'll see.

Hope youre having a great day,
Jen

Hey Jen,

I would definitely recommend that you start slow with yoga too.. I felt so good when I did it in the beginning (mind, body & soul) that I decided to do it every day.. Big mistake.. It took about a week, but it knocked me into a major flare..

I'd start with maybe twice a week (spaced out with 3 or so days in between each workout).. You might even try starting with one day a week.. Even after all this time, I only do it every other day because there is such a thing as too much exercise.. Guess I found that out the hard way.. http://www.healthboards.com/ubb/biggrin.gif

I had x-rays done a couple of years ago & was experiencing the middle back pain then, but nothing showed up that was out of the ordinary.. Seems strange that so many FMS patients can have the same pain, but nobody seems to know why.. I don't think doctors understand much about the spine or the brain though.. If so, paralysis would probably be a thing of the past..

I'll have to try the back pain yoga too.. I just spent a whopping $120 at Gaiam, so I'll have to wait a bit before I do any more ordering.. http://www.healthboards.com/ubb/wink.gif Rodney Yee is the best video instructor in my opinion (and not just because of the eye candy factor http://www.healthboards.com/ubb/smile.gif) because there's something about his voice that's sooooo soothing.. Plus, the women instructors in the tapes I've seen must be made of rubber or something.. There are positions that I really don't want to assume, if you know what I mean.. http://www.healthboards.com/ubb/biggrin.gif

Anyway, I hope things go well with your test results.. I'll see if my doc has any more light to shed on the subject when I see him next time.. He might blame it on my previous back injuries though (I was in an auto accident over 10 years ago - no physical damage on the outside, but 3 spinal injuries that didn't require surgery or anything)..

I hope your week is going well! Are you starting to feel any better yet?

Take Care,
Melanie

Hey Melanie,

Hope you had a great day yesterday sweetie!

I MOST certainly WILL take it VERY slowly on that yoga stuff lol. Boy, I remember when i used to be able to do 100 crunches a day on top of my other exercise. Again, tho I had started very very slow and worked my way up. Uhm, right now it HURTS just to get up from my chair lol. BUT I WILL MAKE IT!!! yea im all stoked and ready for this yoga stuff, bring it on . LOL if you dont hear from me for two weeks youll know im in BED and cant move lol.

I like what you said about the women instructors:

"Plus, the women instructors in the tapes I've seen must be made of rubber or something.. There are positions that I really don't want to assume, if you know what I mean."

OHHH yea i know what you mean, as in goodness im not a human PRETZEL!!!

Hope you are having a pain free day today hon,
the weather here is thunderstorms today and the next 5 days, so thats not helping much, but my back is feeling a bit better than it was last week. Thanks for asking. Talk to you later,

Love and hugs,
Jen

I am right there with you all. Yesterday, was at P.T. for this and then over to Chiro. I was in such a bad flare that I was crying when talking at the beginning of the sssion. Certainly didn't have me doing exercises, rather working (massage ) on the whole back and the mid-back. I asked the P.T. therapist if I am going to be like this the rest of my life. He said we will try to teach you some ways to help manage the symptoms (mid-back) stretches, and it appears there is no CURE for what we all here experience here (w/Mid-back esp. I was in a flare from doing some things for a week I shouldn't have attempted and the flare this time has me seriously doubting that I should attempt to do anything tp flare it like this again.Yet, sometimes, I have done nothing to cause it to flare.
He said the mid-back is inflammation causing pain and I am off anti-inflammatory ,Relafen as I developed an ulcer after a yr. So, I am able to tell it is a little worse, tho I thought previously it made no difference. Also said the the cartilage is inflamed and called it costochondritis as it wraps to front of mid-sternum junction from mid-back. Plus, lower back was so bad I couldn't put weight on it to stand when the spasms were going crazy at the chiro. He looked like he didn't normally experience this and took the whole thing seriously and really was trying to help my back.
Will say Tiger Balm Oil helps the back but I am now allergic after 13 yrs. to one of the oils and my back starts itching and can't use. It is so deep penetrating that it helps some. Please try if you haven't, also ice, heat stretches. There is no answer for us,. I take pain medication and don't know what I'd do if I didn't. Soleil

Hey Soleil ,,

How are you hon? Kinda scary huh to think we might or probably will be like this for the rest of our lives. I'm 48, will be 49 in a few weeks, so that leaves ALOT of lifetime ahead if nothing else happens. I feel so sorry for the ones who are still so young and going thru this.

YUP!! exactly!! My doc mentioned that muscle or whatever that comes around to the front of the breastbone area, THUS, the PAIN i feel there AS WELL.

Oh yea, that pain in the midsection is, extremely bad. Some days are much better than others tho. Right now tho, the weather here isnt helping, lots of thunderstorms and such, so that always makes me ache more. I'm actually waiting on those xrays they took to find out what else is going on back there. Might be disc related, or might be inflammation, or just plain good ole fibro http://www.healthboards.com/ubb/t_down.gif

Just have to wait and see what they say, ohhh do tell me how did the massage feel on your back?? I need to go back and get one soon.

Love and hugs,
Jen

Hey ladies, I've mentioned it before, but will say again, try the book Breathworks for the Back by Nancy Swayzee. The premise of the exercises are to strengthen the muscles that girdle your mid-section.There are 3 layers of muscle in front, including the one that wraps around to the back. Regular exercise only strengthens the outer muscle which does not provide the support for holding you up.I'm not sure if my mid-back pain is the same as yours. Mine feels like it is in the muscle on either side of the spine, but it is in the middle. I also have a pain right on the spine just below my neck that feels like it is the spine. There's a spot that if I press, it feels almost like an electrical shock. I also have one hernitaed and 2 bulging disks in my low back to add to my pleasure.Anyway I'm trying the book. So far I'm just finishing week one, which only includes three exercises. You hold your abdomen in, but breath so that your diaphragm expands, which causes the muscles to push against each other. It makes sense to me, but I guess time will tell.

Thanks for suggestion of the book. When I can fit in the budget, I will. Sounds like this is more common than you'd think to have. You think no one could be having this kind of pain. I know they are taking me seriously, and the massage was great, at the time. Then, got to the chiro, and was too sore to touch and in more pain. It was a really bad situation at the time. But, now today, after both treatments and coming home and crying some more, taking pain and muscle medication, rest, ice, later heat and more rest, I am better today than yesterday, However, it is not gone from mid- region. Maybe, we will get this better if I keep going. They also put a rib head in that was sticking up and I must say I was crying. It is really painful to do. Even, the chiro looked like he felt bad about it.
Was going to 4th fireworks, but I know I won't make it with my back and would ruin it for everyone because my back won't last to sit like that. So...l will watch from here and make the most of it. Seems like every 4th of July is really bad flare time as I look back. Maybe, its the weather at this time of year. But, winter is hell frankly for FIbro , so that doesn't make any sense. Happy 4th to all, Soleil

Hey Deb,

Thanks for suggesting the book. I've never heard of it but I must say it sounds really interesting. Will check to see if the library has it, cause I'm willing to try it. Please keep us posted on your progress with this exercise. Hope you have a great weekend.

Sol,
Im so sorry you were in so much pain and that youre going to miss the fireworks hon!! But i completely understand that. Ive had to turn down many things Id like to have done with family simply because i felt i would ruin it for them by hurting and haveing to come home. For instance, son wanted me to go to austin to visit him for a few days, just to relax and hang out with him for a few days. He planned shopping, movies, picnic. I'm in a flareup right now, so I had to say i couldnt do it. He understood and said we'd do something for my birthday then, but I still feel guilty for not going. I could have gone, but i would have ruined the 3 day weekend for everyone.

So, I'll sit here too and watch the fireworks from my house or on tv. I wish you all a HAPPY and SAFE July 4th.

Love and hugs,
Jen

Hey Jen,

Sorry to hear about the weather down there.. http://www.healthboards.com/ubb/frown.gif It's that time of the month for me, so I've been feeling pretty tapped for energy lately.. I'll probably just spend the majority of the holiday weekend relaxing since I doubt I'll be getting many business calls..

I'm amazed that some people with fibromyalgia can go see fireworks.. I'm limited to television access myself because they set my nerves on edge if I see them up close and personal.. I have "dog ears" though (that's what I call my problem anyway).. I can hear water dripping from 100 yards away, so all the snap, crackle and popping of fireworks is way too loud for me to handle..

Anyway, just thought I'd pop off a quick post since I probably won't be on much this weekend.. Have a great one if you can! And I'm glad you're feeling a little bit better - every little bit helps.. http://www.healthboards.com/ubb/smile.gif

Take Care,
Melanie

Hey Melanie,

Sorry to hear its THAT time. That's something i dont miss. I had a total hysterectomy done at age 26, I'll be 49 July 18th, so it's been AWHILE for me since I've had to think of that.

Hope your day went well. I'm starting to feel better, still back down to i'd say a 4 in pain, but not a 7 or 8 as I had been last week, so it's a big improvement. The storms we've been having for the last week will finally be gone and that's good. I feel like smiling again http://www.healthboards.com/ubb/smile.gif .

Hope youre doing better soon hon, and that you enjoy your weekend and relax. Talk to you soon.

Love and hugs,
Jen

Loud noises, is our fibro-reaction to pain perception!!
We just can't tolerate it. I zap commercials on TV because they get so loud. Noise can put us into a fibro-flare.

Degenerative disc disease can cause excruciating pain as well as bulging discs, and spinal spurs digging into nerve endings and then muscle spasms. I have it all. From neck to tail-bone. I can certainly relate to the pain everyone is describing. I think all of this sums up to one word...fibromyalgia. I think it is the general term given to us by the medical profession for our underlying back problems??? I am suppose to watch for numbness in arms and legs and get an MRI every 6 months. We are watching for stenosis in the lower back and upper neck areas. Surgery would help if that occurs, to open up the occlusion so nerves won't be pinched. We have to keep in mind that fibromyalgia is a general term for general aches and pains. We also have to be our own guard dogs for other acute problems and not shrug it off as, "Oh, it is just the fibro." which I have a tendancy to do. These posts reminded me of that! MistyMisty

OK, finally got my results for my xrays done on my back . Not good news. I knew I had scoliosis to begin with, but on top of that I have osteoporosis, and the disc in the MIDDLE of the back slips off to the right and pinches a nerve there. She said it was bad enough to consider surgery.

I don't want back surgery as I seem to hear more horror stories than good ones concerning back surgery. She said she was sending me to pain management, for shots in the back then. For stronger meds as well.

Right now my plate is so full. Just took mom in for severe diverticulitis, she has a cat scan this coming tue. Her treadmill stress test was postponed till the 26. Last week she went to one of those other tests, a heart cath, plus have to take my dad in on wed for his appt, plus mom again on friday to find out the results of the cat scan. ON TOP OF THAT, yesterday my hubby went to the eye specialist. They think he has a tumor and is scheduled for an MRI on mon. Hes been having migraines and blind spots as well.
I feel as if im being pulled in soooo many directions . I told my doctor yes i NEED pain management, but i dont have time right now. She knows whats going on with my elderly parents, and that Im their sole caretaker. She just nodded and said call me when youre ready. Just don't wait too long or youll end up in the hospital yourself.
She also mentioned tho, alot of her fibro patients have complained about that middle disc back pain. So, who knows, could it be another thing fibro brings on?
anyway, hope you are all having a good day,
Love and hugs,
Jen
and ohhhhhhh pleaseeeeeeee pray for me, i need all the prayers I can get right now.

oh forgot, she said, the disc was bone on bone now which is NOT good as we all know. So, if youre having any kind of severe back pain, i strongly suggest you get that T-scan xray.
Love ya,
Jen

Sorry about your parents, I am truly am. besides your caring for them, you have yourself at the same time, and stress makes eveything hurt worse.
I hope your dad doesn't have a tumor..... let's hope.
I have the bonepain mid back and have x-rays and I am not bone on bone mid-back, I am cervical and lower lumbar. But, I have the bone pain mid-back and slightly to the left. It is unlike anything else. It does nauseate a person when it is peaking if you don't get pain mediaction in you. It muust run in Fibro for a lot of us form what we are saying here. i know driving my car makes it worse...... Soleil