Last Friday I ended up in the doctors office in serious pain. I felt like my spine was in a vice grip in the center of my back. Once I sat completely still for 20 minutes the pain would let up and I wold get some relief. Anyway, she gave me a shot for the pain, medrol pack and some mild muscle relaxers for sleep and I’m going to see if I can tolerate and increase in my fibro meds. She referred me to a rheumatologist and said she felt my pain was too much to just be fibro. Monday I went to see the endocrinologist fr the thyroid issues and he reviewed my labs from end of march and said my thyroid needed “fine tuning” but I was not off enough to make me feel this bad. I love both of my doctors. I trust them both very much but I found it odd she said fibro shouldn’t cause this much pain. I hear so many people talk about the debilitating pain from fibro so that doesn’t make sense to me. I there a pain level for fibro?
If it makes you feel any better, I get the exact same pain in my back from fibro, and mild osteo arthritis. The back pain is horrible, makes me even feel nauseous at times, it's so bad. But I'm not a doctor and can't say whether your back pain is fibro or not. I will say, though, that yes, fibro can hurt terribly in the back.
I think it's a good idea to see the rheumotologist, to get tests done to rule out other possible causes.
If you have osteo in the back, it's possible that it's being amplified by the fibro. My pain mgmt doc gave me radio ablation for the horrid back pain, figuring that the osteo was radiating down my back, making me feel even worse. Well the procedure worked and helped for about 8 months, and I just recently had it done again. I mention it in case it might be a possibility for you. I will add that the pain after the 1st procedure was horrific for the 1st 2 weeks then I felt a lot better in the back. At least in that part of it.
I don't think there's a set pain level for fibro. Fibro can hurt like h#ll, so much so that you feel like you're going out of your mind from the pain. And the back pain is particularly bad. And constant. Just a horrid grinding pressure that never lets up. Like your back's in a vise grip, just as you say. In fact, I didn't realize how horrid it was until I had the second procedure done on it and realized so much of the debilitating walking pain I was experiencing came from the back, not just my knees. I was literally hunched over, like an old woman, from the pain.
Again, I think it's a great idea to see a specialist (rheumatologist) to see if anything else could be going on. But don't be surprised if everything comes back normal. I'm guessing it's fibro sitting in your spine, causing you such pain.
Hugs to you,
Petunia
My back has always been a problem for me. Sometimes it " goes out" and I can’t even walk for a few days. Or stand! But my entire body can get into so much pain it hurts to breathe after I have done too much. Yes, fibro can cause horrible pain. Especially if you have no pain meds to rescue you when it gets crazy like that!!!
My pcp tested me for lupus and rheumatoid arthritis but both came back negative. I've had the pain and nerve and tingly feet since March shortly after I started taking thyroid meds. My doctor feels the rheumatologist will do more specific tests than she does. Most people seem to have fibo and something else and we haven't found anything else in all my tests yet. I just hear all the talk of the extreme pain and I didn't want to end up where my doctor doesn't believe the pain is real.
Hi MrsK, I was quite surprised when my doctor said to me about 7 months ago, I’m not talking about the muscle and joint fatigue you get with fibromyalgia, I’m talking about the fatigue you had when your liver failed and you were really anemic. I must admit I was stunned, and expect she was when I said there isn’t a lot of difference when the fibro fatigue is bad. It isn’t just joint and muscle fatigue it’s overall fatigue where it’s difficult to get out of bed, you feel all your energy has been drained away, and you can’t think straight.
I really don’t think most doctors know enough about fibromyalgia and how severe the symptoms can get. I sometimes get pain particularly in one shoulder, hips and part of my back, where I can’t move without excruciating pain until I’ve taken pain killers and laid still for t least an hour. I’ve also had the hip pain which I call screaming sciatica last for up to 4 days and kept thinking it would go away on it’s own. I’ve started to keep a pain diary as a result of joining the forum because I’m one of those people that under reports to the doctor, because when the severe pain goes away I tend to erase it from my mind. It’s hard to forget the ongoing daily pain since I see my doctor very seldom, and that’s what I normally report. . Last time she told me I have arthritis in my back as well although not where I get the most pain. Also different people have different pain levels with fibro, sometimes at an 11 out of a scale of 10.
Like a lot of others I also have other conditions including diabetes which affects my vision but it is under control, and none of them should cause this type of pain where I get the pain.
That does not mean that you shouldn’t explore other potential diagnoses with your doctor. Fibro mimics too many other conditions not to have them checked out.
I guess one step or one patient at a time we’ll get our doctors to understand this syndrome.
Good luck in resolving this.
MrsK,
Does the bottom your foot ever feel like you have put some ice up against the middle of it? In fact, if I even press lightly against it, it also feels like pain. The sensation between pain and ice cold is so close that it's hard to distinguish one from the other. It's only my left foot that feels this way.
I'm like you, MrsK, so far have nothing more than fibro, besides osteo arthritis. It seems odd to "just" have fibro, but I guess time will tell for the both of us Meanwhile, it's goood to know that you're going to a rheumy. Might as well get as much info as you can on your illness.
And a good doctor will believe that the pain is real. Our stories are all too similar to have been made up and if they've dealt with other fibro people (most likely they have,) then they know how real your pain is and won't ignore it or treat you like a liar.
Teresa,
Yeah, my knee does that! It burns horribly then I can't put any pressure on my leg at all because the burning sensation becomes so extreme that it feels like my shin area is on fire. is this how your back feels when it goes out? And yes, it takes a few days before I can walk again.
And hurting to breathe after too much pain, yes to that, too. And it also happens when i work too hard. Thank God for my inhaler! Do you have one? I find it VERY useful when that happens. And it happens in the cold months, not so much in the warmer ones.
Does any of this sound familiar to you?
I think that the horrible back pain is shared by many, if not most, fibro sufferers. It's an odd place for an illness like fibro to strike. I would love to know why the back is such a prime target.
Hope you're feeling okay tonight!
B2chi,
That completely drained feeling of fatigue is perhaps the scariest symptom of all, at least to me. That's when I truly wonder if I have the strength to go on because I feel like I don't have enough energy to do anything beyond lying on my bed and just existing. So I totally GET what you mean when you compare it to the fatigue you had with a very bad illness. Yes, it IS overwhelming and it can come on out of the blue and just blanket you completely. I can't imagine a doctor truly understanding it without having experienced it because, to be honest, when I first came to this site, my fibro wasn't as bad as it is now and I didn't experience as much fatigue. I couldn't comprehend what people were talking about when they mentioned their fibro fog and even I thought they might be overstating it a bit. Well, I know now that they weren't.
And you might be surprised about that arthritis that you have in your back, as arthritis pain can radiate downwards. I've had a procedure done on my back 2 times now and it's NOT in the spot where I feel the most pain (a tenderpoint in my back.) Instead it's up a bit from there, and the osteo pain radiates down. So you might possibly benefit from this procedure, called radio ablation. It was extremely painful for the 1st 3 weeks after getting it but then it did help to manage a lot of the back pain for about 8 months. I just realized that I already mentioned this earlier, most likely, lol. Speaking of fibro fog...
Hi Mrs K,
Have the meds helped at all? If it is muscle spasms, the meds should hopefully give you a little relief. Since Fibromyalgia is known to affect the joints and muscles, we are more prone to injuries such as muscle pulls and strains, sometimes for no apparent reason. Also, with our pain tolerance being much lower due to our crazy nervous systems, I think even the smallest strain can be excruciating. Because FMS affects everyone differently and we all have different levels of pain tolerance, there really isn't a way to specifically set a pain scale.
I think it's always a good idea to have a Rheumatologist, because they are the ones who are knowledgeable about all of the different treatments, and they keep up on all the latest news and studies.
I hope you're feeling better, please let us know!
Renie♥