A rant: "doc, it ain't always my fibro!"

Travelinglady · Apr 16, 2012, 01:36 PM

I'm having an opposite problem from what folks used to have, when docs didn't believe there was such a thing as fibromyalgia. That is, when some docs find out I have a history of fibro, they just give me a cursory exam and then if they don't find anything obvious, they say, "It must be your fibromyalgia. Are you taking Lyrica?"

I am getting so fed up. It ain't always fibro. I KNOW what that pain is like! Case in point, I've been having foot trouble for almost 4 months now. The first orthopedist I went to x-rayed it and saw nothing wrong and then touched it for a second and made that proclamation about "it must be fibro." She said she didn't think even an MRI would show anything.

I've been seeing a podiatrist for three months now. He's been giving me Lodine and a spray to use called Fortex. They haven't helped. At my last appointment, he started on the fibro theme.

I finally saw another orthopedist a week or so ago, and he scheduled me for an MRI. I had two of them on Friday. I had returned home from the first MRI and got a call that the MRI doc wanted me to come back for a more detailed MRI of my tendons. He evidently saw something. I am waiting to hear the final results. If it does show up something that could have been treated 4 MONTHS AGO, then I am going to be very aggravated. In the meantime, I've had 4 doc's appts. for it and taken all those meds. Plus I've not been able to walk well on it and was told to stay off of it as much as I can! Gee.

Anybody else had this kind of experience, where your symptoms have been blown off as fibro, when the problem was actually something else?

kindachaotic · Apr 17, 2012, 02:48 AM

Hi Payne1, Here's another fibro story:

Had 2nd root canal for same abscessed tooth, which never healed despite going thru 4 different antibiotics.
After antibiotic #2 this endodontist (sp?) tells me my continuing pain is from the fibro. I literally melt into tears right there in the chair. So...we try 2 more antibiotics because I'm convinced it's still infected.
Long story short, it never healed & had to be pulled.
All this costing me thousands because we don't have dental Ins.

You are not alone. Will say a prayer your foot is cared for & healed.

Chaotic

Leed · Apr 17, 2012, 03:09 PM

OMG -- A DENTIST tells you your tooth pain is FIBRO??? Now that's a new one! That dentist ought to be reported! What a creep! I think EVERYONE knows the difference between TOOTH pain & fibro pain. I hope the fleas of a thousand camels infest his armpits!

I had been going to a cardiologist because of chest pain & shortness of breath. So I had a heart catheterization, which turned out fine, and wore a Holter monitor -- which was fine too. My EKG at my GP had shown that I had had a "silent" heart attack, thus the visit to the cardiologist. Anyway -- the heart doc said it "must be Fibro." HUH? Is that why I can't breath?? Sounds a little strange to me. I'd never been diagnosed with Fibro before. I've had severe spinal problems for more than 25 years -- but no Fibro. Weird.

So who knows. Sometimes I think they just throw that at us cause they don't know WHAT is wrong with us.

Take care & God bless. Hugs, Lee

Travelinglady · Apr 17, 2012, 03:19 PM

I agree, Leed. The docs definitely do throw the fibro card at us when they can't come up with anything else! Evidently fibromyalgia is a disorder that can cause every kind of symptom imaginable....

bipolarmedstudent · Apr 17, 2012, 04:00 PM

Honestly, if I were you I wouldn't even tell doctors you have fibro. I mean, obviously your GP knows, but when you see a new doctor, I wouldn't tell them.

Anyway, what's the issue you are having? What are your symptoms?

Travelinglady · Apr 17, 2012, 07:01 PM

Bipolarmedstudent, I have concluded what you just suggested. I should just keep my yap shut (and the word "fibromyalgia" off any papers I'm given to fill out) when I go to a new doc. It's like that word starts flashing in the docs' brains otherwise. Thanks.

Since you asked, about 4 months ago I began to have a sense of pulling and discomfort at the end of my leg, at the top of my foot, when I was driving. And when I tried to go walking in the mall, I could only get around for a short stroll before my foot started hurting. The pain began at the top of the foot area I mentioned and started heading down on each side. When the part of my foot just below my ankle was touched by a doc, it really hurt. Since then the pain has gotten worse.

I started with an orthopedist, who was the one who said "fibromyalgia." Then I went to a podiatrist. He has me on Lodine and a spray called Fortex. He also told me to stay off of it as much as possible and sold me some pads to put in my shoes for arch support. He also gave me a cortisone shot. I've seen him three times over all.

After seeing him for 3 months, the pain is worse if I try to walk on it very much at all. So, last week or so I went to another orthopedist. He suggested an MRI. (X-rays have shown nothing out of the ordinary.) I had one on Friday and then was called back in by the radiologist to have a more detailed one done on a certain area of my tendons, from what I gathered from what the person on the phone said. So, I went back and had that done.

I am waiting now to hear what the MRI's showed. My orthopedist's office said the report had been gotten ready today for my doc to review, and he would call me when he had a chance to see it. So, that's my situation .....

Meanwhile, I have not driven a car in about 4 months and spend most of my time at home, just getting up for necessities. Needless to say, I am miserable. BTW, I am taking Vicodin and Tylenol for pain, since I also have osteoarthritis of the spine. I am seeing a spine doc on Thursday to see what he says about my spine and my foot pain and also to see if PT will help my spine problems.

kindachaotic · Apr 17, 2012, 07:04 PM

Bipolarmedstudent, Issues with fibro are pain in all pressure points, get tendonitis easily with tears & wasting. Surgery on both elbows & R shoulder. Every other year or so am in PT for some sort of tendon related issue, latest in 2010 for plantar fascitis (sp?). The fogginess (this was present before bipolar meds, many years). Sometimes my skin is even tender to touch. Can't sit or stand for any length of time, sleep got so uncomfortable was tossing all over from pain, so hardly any sleep.

But... in spring of 1999 I asked to try neurontin. Had heard it was good for periphreal neuropathy (sp?). We titrated up to 300mg tid & after a while on up to 600mg tid which is what I have stayed on. Only downside has been weight gain, but benefits of pain relief have been worth it. Still have the tendonnitis issues, surgery, PT, ect. but this drug breaks or blocks pain signals, you can explain this better than me.
Last year I weaned off & stayed off for 2 months thinking I'd been on it so long do I still really need it. Turns out it was helping my anxiety, panic attacks, no wonder I had to increase my klonopin... Well, every single symptom came back, some worse than before so started back on it. Was also able to decrease klonopin to previous dosage. Recently pdoc said it can help with brain zaps. Never told him I did a trial run without it.

So that's my fibro symptoms/issues. Feel free to ask me any questions or make comments, I value your knowledge.

Take care.

Travelinglady · Apr 17, 2012, 07:21 PM

Yeah, I am wondering if I don't have at least one tendon tear or something like that......But doesn't that need more treatment than what I have been getting? And taking Lyrica wouldn't solve a physical problem like that!

kindachaotic · Apr 17, 2012, 07:53 PM

Correct about Lyrica, it only helps with pain, it's an antiseizure drug, I think. It's no help with inflamation, tears, ect.

Had an MRI of my foot also cause x-rays looked like there was a break in heel spur. There wasn't a break & got dx of plantar fascitis (sp?). Was supposed to be in PT for 6-8wks but after 4wks was sick of going & did exercises at home, finally got better & didn't limp anymore. But had limped for months before seeing my foot doc. From start to finish the whole mess lasted almost a year & boy was it painful. For now both feet are fine.

Don't know what your dx could be. Hope they figure it out soon so you can get some relief & mobility back.

bipolarmedstudent · Apr 17, 2012, 08:00 PM

Quote:

Originally Posted by PAYNE1

Bipolarmedstudent, I have concluded what you just suggested. I should just keep my yap shut (and the word "fibromyalgia" off any papers I'm given to fill out) when I go to a new doc. It's like that word starts flashing in the docs' brains otherwise. Thanks.

Since you asked, about 4 months ago I began to have a sense of pulling and discomfort at the end of my leg, at the top of my foot, when I was driving. And when I tried to go walking in the mall, I could only get around for a short stroll before my foot started hurting. The pain began at the top of the foot area I mentioned and started heading down on each side. When the part of my foot just below my ankle was touched by a doc, it really hurt. Since then the pain has gotten worse.

I started with an orthopedist, who was the one who said "fibromyalgia." Then I went to a podiatrist. He has me on Lodine and a spray called Fortex. He also told me to stay off of it as much as possible and sold me some pads to put in my shoes for arch support. He also gave me a cortisone shot. I've seen him three times over all.

After seeing him for 3 months, the pain is worse if I try to walk on it very much at all. So, last week or so I went to another orthopedist. He suggested an MRI. (X-rays have shown nothing out of the ordinary.) I had one on Friday and then was called back in by the radiologist to have a more detailed one done on a certain area of my tendons, from what I gathered from what the person on the phone said. So, I went back and had that done.

I am waiting now to hear what the MRI's showed. My orthopedist's office said the report had been gotten ready today for my doc to review, and he would call me when he had a chance to see it. So, that's my situation .....

Meanwhile, I have not driven a car in about 4 months and spend most of my time at home, just getting up for necessities. Needless to say, I am miserable. BTW, I am taking Vicodin and Tylenol for pain, since I also have osteoarthritis of the spine. I am seeing a spine doc on Thursday to see what he says about my spine and my foot pain and also to see if PT will help my spine problems.

Well, it looks like you are having the proper investigations done. Honestly, I don't know what it is, and I don't want to give advice because I don't feel confident in my knowledge about this. The only thing I'm wondering about is sciatica. Has any doctor mentioned the possibility of sciatica to you? I'm probably completely off base though -- again, I'm not confident at all in my knowledge about this area of medicine. I'm suprised you were able to have an MRI done so quickly though! Usually people have to wait super long for that.

The only advice I have is to never mention your fibro to another doctor again. I know I'm not supposed to say that (oh hell, if my profs heard me giving this advice I'd be in hot water), but most doctors won't investigate you seriously if they know you have fibro. It's not right but that's how it is.

bipolarmedstudent · Apr 17, 2012, 08:06 PM

Quote:

Originally Posted by kindachaotic

Bipolarmedstudent, Issues with fibro are pain in all pressure points, get tendonitis easily with tears & wasting. Surgery on both elbows & R shoulder. Every other year or so am in PT for some sort of tendon related issue, latest in 2010 for plantar fascitis (sp?). The fogginess (this was present before bipolar meds, many years). Sometimes my skin is even tender to touch. Can't sit or stand for any length of time, sleep got so uncomfortable was tossing all over from pain, so hardly any sleep.

But... in spring of 1999 I asked to try neurontin. Had heard it was good for periphreal neuropathy (sp?). We titrated up to 300mg tid & after a while on up to 600mg tid which is what I have stayed on. Only downside has been weight gain, but benefits of pain relief have been worth it. Still have the tendonnitis issues, surgery, PT, ect. but this drug breaks or blocks pain signals, you can explain this better than me.
Last year I weaned off & stayed off for 2 months thinking I'd been on it so long do I still really need it. Turns out it was helping my anxiety, panic attacks, no wonder I had to increase my klonopin... Well, every single symptom came back, some worse than before so started back on it. Was also able to decrease klonopin to previous dosage. Recently pdoc said it can help with brain zaps. Never told him I did a trial run without it.

So that's my fibro symptoms/issues. Feel free to ask me any questions or make comments, I value your knowledge.

Take care.

Sorry..I'm not clear what your question is, exactly?

If you're asking about neuropathic pain, generally the best treatments for that are tricyclic antidepressants/SSRIs/SNRIs, Lyrica/Neurontin, and tramadol. Marijuana and ketamine can also help, but are experimental treatments. And then of course there are opioids, but good luck getting an rx for that!

kindachaotic · Apr 17, 2012, 08:22 PM

Payne1, Didn't mean to take over your thread but looking at it now...
Sorta looks like I did.

When you get results & know what they plan to do let us know.
Will seriously consider keeping my yap shut also about fibro.

Take good care.

kindachaotic · Apr 17, 2012, 08:27 PM

BMS, The neurontin has helped with the fibro all these years.
Sorry if I confused you, thought you were asking what issues were with fibro, before meds.

Thanks.

Travelinglady · Apr 17, 2012, 08:27 PM

Yes, I do have some pain down my right "cheek" and leg sometimes, but not too often. I actually hope it's something other than nerve pain, because I am not happy with the idea of taking any more pain meds. Thanks for your honesty.

Back to Lyrica, my understanding is that it's really a stronger version of Neurontin.....I actually also take Tegretol, since I've had atypical trigimineal neuralgia, and I have Bipolar II.

I can't use crutches or a wheelchair right now, since I had surgery on my right hand for carpal tunnel in February and my palm is still sensitive. I tell you, it's quite frustrating. But I'm hanging in here.

As you folks see, I am trying to do the best I can to be my own advocate.

We have several MRI places around here, actually, so any one of them is not too busy, it seems.....

Freefall1974 · Apr 17, 2012, 08:49 PM

As a health care provider I do NOT think you should withhold your medical history. That can lead to the provider "chasing" your symptoms which leads to expensive, unnecessary workups. I have never deferred a patients symptoms to their FM. That is a difficult disease, hard to diagnose, hard to manage. If your provider blows you off then you blow them off. They are obviously insensitive morons. And please be careful taking Vicodin and Tylenol if you are taking them at the same time. Way too much acetaminophen and leads to an unhappy liver. I am saving mine for adult beverages.

kindachaotic · Apr 17, 2012, 08:49 PM

Unless there is a generic for Lyrica, my ins won't pay for it.

.

Sounds like you are doing a great job of advocate & dealing with existing ailments also. You should be heard by an open mind, mum's the word on fibro.

kindachaotic · Apr 17, 2012, 09:21 PM

Oh Freefall, I think we just got busted.

Respect you opinions tho.

Thing is getting a new doc, if we get blown off, can be easier said than done. With HMO's depending on how many docs are available, the one's with best reputations usually aren't taking new patients. If you live rural it's even worse. If you have to change ins co's for whatever reason alot of the time you are forced to change docs & we might get a moron, as you say.

Anyway, these are some of the aspects we face as patients/laypersons.

BTW Welcome to PC!!

Travelinglady · Apr 17, 2012, 09:30 PM

Freefall, I hear what you are saying. Definitely I will open up about the fibro if I see it's needed. The orthopedist who blew me off was really a poor excuse for a doc for other reasons, too, that I'll not belabor. But I am truly hesitant to immediately bring the fibro to a doc's attention, after my previous experiences.

Indeed, I am very mindful about the dangers of too much Tylenol along with Vicodin, since Vicodin also includes it. I have talked to my pharmacist and my doc about appropriate amounts and seem to have found an amount that works but doesn't overdose me on Tylenol. Thanks for bringing it up, though, just in case.....

I'm glad you're here at PsychCentral.

Travelinglady · Apr 17, 2012, 09:34 PM

Oh, kindachaotic, no prob. You actually gave me some insight about fibro and tendon problems!

Freefall1974 · Apr 17, 2012, 10:17 PM

Your post under your name says you are recovering from carpal tunnel surgery. Maybe you have tarsal tunnel syndrome? Or maybe have an EMG and then at least someone would be able to rule out a "nerve" problem, and then move on to doing a appropriate workup. I feel sad for you. Those providers that you have access to apparently suck. here, there, everywhere. Hang in there. Hopefully the re-do MRI will hold the key to set you free.

Travelinglady · Apr 17, 2012, 10:24 PM

Freefall, the tarsal tunnel issue did occur to me awhile back, so I did have the EMG done, and it showed no problem! Thanks for continuing to consider the options. I have been trying to do so as well.

I appreciate your sympathy!

Travelinglady · Apr 18, 2012, 02:30 PM

Sigh, my MRI results came back and didn't show any problems. At least this orthopedist said he would get me an appointment with a podiatrist who is an expert to see if something can be determined. He isn't convinced my pain is caused by fibro either, thank goodness.

I have decided I'll start walking around in the house more, anyway. I am getting even more depressed by having to just sit around.

Darn. I was hoping at least something treatable was going to show up!

kindachaotic · Apr 18, 2012, 05:32 PM

Payne, Don't give up & try not to get too discouraged.
My podiatrist has come thru for me on 2 different issues, she's great!!

If this one is worth their salt you will get an answer & treatment soon.
Know you have other health problems & your wrist is still tender. Maybe getting up alittle bit will help your foot & your back. Sounds like you are in tune with how far to push yourself. Just be safe & careful, no falling!!!

Take good care.

Chaotic