I may or may not have fibromyalgia. Or maybe I should say that I have fibromyalgia if I accept the diagnosis? That will maybe make more sense – well, maybe make some sense – after I explain, hopefully? Honestly, if it ends up making sense to you, readers, please let me know. I’m still confused!
My gastroenterologist has scheduled me for further testing in about a month. Not to “toot” my own horn or anything, but I am enough of a badass that my gastroenterologist still seems to be betting there’s something more “down there.” However, it takes more than a blood test to know, and it will be a bit before I learn anything conclusive. My rheumatologist, in the meantime, claims that I have fibromyalgia. (I don’t know if he’ll change his mind and decide to go with something else if my gastroenterologist diagnoses it, or if he’ll claim I have both, or what?)
I say claims because I’m not really sure whether my rheumatologist actually believes that I have fibromyalgia, or even believes in fibromyalgia, or whether he was just using that as a default, “I don’t see obvious signs of rheumatoid arthritis or lupus. Let’s just go with fibro” diagnosis. He also didn’t seem particularly interested in comparing notes with my other doctors, with whom I have longer histories. This doctor was my first rheumatologist, and I was not impressed with the guy. He barely listened, made snap judgments, and I don’t think he even bothered to actually examine anything. He felt my hands, and he indicated that he felt no obvious joint damage. (This is not necessarily a surprise to me, as my new symptoms haven’t been going on a long time? I’d hope I wouldn’t yet show extensive joint damage!?) He also jabbed me with his fingernails in a few places (not 18 places, though. I counted!) It did hurt, but did I mention he jabbed with his fingernails? Of course it hurt! He did order blood tests, which will be back in a week or so, I assume. Other than that, he just said “fibro” and was done with it. I tried to ask some questions. I have a friend with fibro, and my understanding of it is that it really is a very shooting, burning pain, all over. I have fatigue and aching joints, but nothing I would necessarily characterize as all over (it seems mostly in my joints) or burning/shooting (it seems more just an ache with swelling?) I have IBS and migraines, but I’ve had those all my life. Those aren’t new symptoms. I feel insulted and confused by the whole experience. I’m not sure how seriously the rheumatologist took the diagnosis, and I have to figure out what to do if nothing else ends up showing up on blood tests. Do I say I have fibro? How do I actually know if I do?
I feel insulted by the whole experience. I feel like fibromyalgia patients in general – whether or not I end up being one of them – should be insulted by that experience. I’m not sure how seriously the rheumatologist takes fibro, but I, at least, take it seriously. I take it seriously enough that I feel a doctor shouldn’t just drop an F-bomb like that on a patient then send her off. Fibromyalgia is a serious nervous system disorder. Does that rheumatologist even get that, or is he one of those doctors who doesn’t really even believe in something his specialty is supposed to treat?
I’m torn. On the one hand, I don’t feel like I necessarily am ready to say that the fibro diagnosis is the right one. I’d like to see the blood work, follow up with other doctors, and generally do more research. I’d like to be sure I’m treating the right chronic illness, if I’m going to be treating one. On the one hand, I’m angry and unwilling to yet claim I have fibro just because of the way it was haphazardly diagnosed.
On the other hand, I think fibromyalgia might be the scariest of all possible diagnoses to me. I can’t stop thinking about what it means if I do have it. Have I mentioned that it is seriously upsetting to me to not be believed? Fibromyalgia is potentially the worst possible trigger I can think of as someone who desperately fears not being accorded the dignity of her own mind. I already have ADHD, and I’m sure my readers have seen enough Internet memes to know just how many people already don’t believe ADHD is real. Adding fibro into the mix? It feels like my personal version of Hell: desperately trying to treat and manage something for the rest of my life that might cost me everything I care about, while the rest of the world calls me crazy for saying anything is wrong at all.
I believe fibro is real, and I know just enough about it (and will probably research far more than is good for me) to already be having fears of not being able to continue working in the future. I am already having fears of my boss laughing at me for using a “made up” disease as a justification. I did list all of my other diagnoses on my medical history when I saw the rheumatologist. (Though, I probably won’t anymore after this experience!) I am also scared that I got a “psychosomatic” (what I envision my rheumatologist thinking, not my words, just to be clear!) diagnosis because my rheumatologist thinks I’m “crazy.” I’ve talked before about how frightening it is for me, knowing that prejudice against individuals with any kind of prior mental health history is quite real among medical health practitioners. My rheumatologist didn’t technically say it was “all in my head,” but I think he effectively did with how casually he handled that fibro diagnosis. Yeah, I’m scared…
I’ve tried to be kind to the medical establishment. I’ve tried to be proactive when I write about the medical establishment. I’ve tried to talk about how to fix problems, instead of just bitching about doctors’ apparent inability to show trauma sensitivity during visits, their general bias against patients with prior mental health diagnoses, and their general unwillingness to listen and take time (making it take about 4 years and 6 doctors on average) to get a correct chronic illness diagnosis, when I write. Tonight, I’m not willing to just let it go, or try to make it better “in the future.” I want that rheumatologist to know now that he was out of line. It was totally inappropriate how I was “given” that fibro diagnosis. I don’t know whether I truly have fibro, but I do know that the next girl who sees that rheumatologist deserves better, especially if she has it. I’m furiously googling how to make a complaint against that doctor. Any advice, readers? I can’t quiet my own fears about the diagnosis right now, but maybe I can at least try to take some concrete action to help someone else?
Also, anyone actually know how to determine if I have fibro? Or what to do next if I do?
Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.
12 thoughts on “Trust and Mental Health Treatment (Part 2): Dropping the F(ibro) Bomb”
Firstly, thanks for following my own blog, Worn Out Phoenix.
I do have fibro myself. Yes, in those initial stages, when going through the whole process that is diagnosis, it is scary. Basically, to get a diagnosis, everything else has to be ruled out. There is no specific test for fibro. My own diagnosis process took about 12 months from start to finish. Along the way, which involved lots of blood tests, x-rays, CT scans of various parts of the body, you name it, it happened pretty much, a few things were found, so in one way, it was a tiring and emotional experience, but it also answered a few questions too.
Some of my symptoms could have been linked to poly-cystic kidney disease, which is in my gene pool, so had those scans, the first time I have had one of those tests where they inject dye into you to see things properly, if you haven’t experienced that, it’s quite a shock to the system. Luckily, I don’t have that genetic problem, if I don’t have it now, I will never have it. It was also discovered that I have some pretty bad arthritis in my neck. But other than that, everything came back clear, meaning there was only one diagnosis left.
Fibro has many different symptoms, not everyone experiences all of them, and some of those symptoms are conditions in their own right. I have IBS, not all the time, but when I have a flare up, it is pretty bad. Sometimes I have that all over intense pain, again, mainly when I have a flare up. Fatigue is a constant, but yet again, worse with a flare up.
I am never pain free, it is generally aches everywhere, my joints also frequently “freeze up”, so when I move it is like the percussion section of a symphony orchestra. I am on a few things, currently for the rest of this 12 months I cannot be prescribed Codeine, as that are the rules in Australia, you can only have a certain amount every year. It does work very well when combined with the other pain drug I am always on, Tramadol. It doesn’t make me pain free, but it does bring relief, taking the edge off the pain to a manageable level. The only thing that has actually made me pain free is Oxycodone, but they really don’t like giving you that.
I concur with you on the prejudices towards mental health patients by doctors. I have Bipolar 2 (I refer to it as Manic Depression in my blog, as that is the old name for it, and to me actually a better name as it describes exactly what it is), and until my current doctor and rheumatologist, I found every other doctor treated me in a very condescending, and basically disrespectful way.
Because I have this double whammy, Manic Depression and Fibro, they tend to feed off each other, so I am very mindful to keep myself happy, avoiding stress as much as possible. Stress makes Fibro worse, it also makes Manic Depression worse, and when you are in a lot of pain from fibro, when you are heavily fatigued, when you can’t think straight or remember stuff because of fibro fog, it makes you depressed, which for me makes my Manic Depression worse. So, maintaining a positive outlook, even when it seems impossible, is a major key to handling it.
I am on two other drugs for Manic Depression, currently I am coming off one, and geez, that’s not fun at all. The other is actually dealing with both conditions, funnily enough, it was prescribed for the Manic Depression, but one effect of it is to stop involuntary muscle spasms (another symptom of Fibro), and I can tell you, it is great to not have muscles around my eye or in my arms randomly twitching at all anymore. The twitches make you look more psycho, so anything that alleviates that is a good thing !
Lastly, don’t be scared of ANY diagnosis for any chronic condition. I find embracing it, learning about it and understanding it, and what triggers it in you, are very good at making it easier to deal with, and, a lot less stressful. Less stress equals a happier life.
LikeLiked by 1 person
Thanks for your kind words. I had a follow-up with my family doctor, and she was at least much kinder when she described why she thought the rheumatologist thought I had fibo. She also agreed he doesn’t seem like a good fit for me moving forward. I am hoping she will “refer” me to someone else, so my insurance (HMO, sigh) won’t complain. U.S. insurance sucks as far as going to the doctors you need without a ton of hoops and expense. I will probably write a future grouchy post about how much all of these tests are running me. 😦
Reading your descriptions of your joints locking up feels VERY much like how I feel my pain. I’ve had that for many years, even before this current round of symptoms started. My neck will lock up so badly sometimes to where I can’t really move. I’ve gone into a massage place before and been like “I can’t move my neck. Make this stop.” I was told in the past it was whiplash from a previous car wreck, but now it does sound more like fibro pain. And, fatigue, ugh, don’t get me started. It and even worse brain fog than normal for a girl with ADHD are my biggest issues right now. I sound like I have the memory of an nonagenarian!
I try to be the kind of person who embraces diagnoses, but fibro comes with that “many people don’t believe it” bit. I still feel shame and fear when people don’t believe in ADHD, and I think for now I’m feeling worse at the idea of having TWO conditions like that. I know it’s a PTSD thing for me – brings up scary emotional memories of unhappy times. It’s good that there is a community of fibro spoonies out there. I know I will likely need the support if that ends up being (at least one of) my diagnoses. The symptoms are starting to seem more like they fit now that I am reading the words of actual diagnosed fibromyalgia patients (and getting the advice and knowledge I wish I’d gotten from that doc), but, yes, as you said…lots of tests yet before I have a final diagnosis. Thanks again for your comments!
Fibro is an ‘i don’t know ‘ diagnosis. IBS & migraines generally go along with fibro. Have you tried gluten-free? IBS is usually a misdiagnosed celiac, and that will cause body-wide inflammation.
I hate a diagnose of fibro, I researched & tested for everything, there has to be a logical, testable explanation.
LikeLiked by 1 person
I was tested for celiac in the past and supposedly didn’t have it. However, I did test as positive for a wheat allergy a couple of years ago. I do a rotation diet for things that aren’t deathly allergies, at the advice of my allergist. I’m mostly gluten free but eat it (and other things I’m not a 5 allergy on) just enough that my allergies don’t get worse, but not enough to play havoc with my system. I tried fully eliminating wheat when I was first tested, and then I went into a pretty severe reaction when I accidentally had a wheat cupcake. So, from that, I learned that rotation seems to be the way to manage for me, not full elimination. Wheat is in so many things I don’t want to worsen to the point of anaphylaxis if I do accidentally eat it. I think my GI is going to biopsy again for celiac when we do my Crohn’s test next month. Apparently my wheat allergy rotation diet is exactly the kind of diagnosis nightmare wherein I probably don’t get enough wheat to make a second celiac blood test likely to be valid, but I eat just enough wheat that he can’t confidently say untreated celiac can be ruled out. I’m cautiously doing a gluten “challenge” this month to try and fix that problem. So, basically that means I get to knowingly trigger allergies for the next month. But, well, celiac disease would be much more serious than the severity of my wheat allergy, so probably important to know the difference!
LikeLiked by 1 person
I refused to do the challenge, just avoid wheat. But will eat things processed on shared equipment, etc. Wheat is a trigger for me, not an allergy. I understand the anaphylaxis, I do the same with my son & peanuts. I still eat stuff that is on shared equipment or kitchen.
LikeLiked by 1 person
Oh I could have written this x
LikeLiked by 1 person
I was going to tell you a little bit about the diversity of fibro symptoms that I have experienced, but wornoutphoenix has done a good job of that already. 🙂 But yeah, I have experienced everything from stiffness to nerve pain to just general achiness to intense spasms. There is medication to keep it under control. Not everything works for everybody though, and no medicine seem to help some people. Be open to testing for other things, but be open to the fibromyalgia diagnosis too. There is not much to precisely *do* at this point, even after fibro is “confirmed” (i.e. if everything else gets ruled out), but try different medicines (if you so desire), and/or focus on “alternative therapies.” There are a ton of alternative therapies out there, everything from massage, to PT, to meditation, to certain diets, to accupuncture. Again, not everything works for everybody, so you’ve got to find the right combination that works for you. Please feel free to contact me with any questions, or anything at all; I’d be happy to help any way I can. My facebook link is on my blog. And thank you for following my blog, that led me to your post. Take care! ❤
LikeLiked by 1 person
Thank you! I had an unusually bad pain day on Saturday, which ended up keeping me up most of the night. It felt like the “locked up” kind of pain you and wornoutphoenix described, which I’ve also felt before, in my shoulders, back and neck. The only things I found that helped at all were a hot bath with Epsom salts and a heating pad that wrapped around my neck and held together with magnets. I thought about calling my GP and asking for a prescription for the next time, since she had seemed more understanding.
Then I, unfortunately, read more news about the GOP Senate “healthcare” bill and panicked anew about what adding another “preexisting” diagnosis would mean for my future ability to keep healthcare. I ended up being too scared to call. So far, my fears of the medical system and the Republican dystopia are outweighing the pain, but with too many more pain days like Saturday, who knows…
I would definitely appreciate any non-pharmacogenic pain management tips you can offer!
LikeLiked by 1 person
Heating pads/blankets and hot water baths help me a lot too. In fact, I can only sit at work for the whole day with a heating pad on my chair; otherwise, it is too painful and uncomfortable. You can also try a TENS machine for muscle pain. Sometimes it helps, I think, but not consistently… and sometimes it can make the spasms worse, so only do it for a small period of time at first. Other than that, I use some meditation techniques (I wrote a whole blog post talking more about it here >> https://fibronacciblog.wordpress.com/2016/04/27/meditation-for-pain-management/). I was doing aquatic exercises in a warm water pool, which had lasting positive effects on my mobility; but last several months have been crazy with finished up the PhD, so that kind of fell by the wayside. I also paint, which is part of my “art therapy” I guess — sounds stupid, but it often does help to get the emotions out, and/or put my mind some leisurely pursuit. “Distraction” is one of my biggest pain relief tricks — anything to take your mind off the pain… books, work, paint, tv (when all else fails)… basically, anything you enjoy that takes your mind off the pain and gets you through the day! You can also try some massage, and aromatherapy oils; but massage is tricky for me because I am often so tender, any pressure can make the pain worse. A lot of people say they have benefited from accupuncture. I haven’t been able to find a good affordable practitioner in my area yet, but I would like to give it a try. Right now, I am “stabilized” with a concoction of daily medication and “emergency tramadol” that is helping me maintain a halfway normal life. It is a new normal, however, and none of the meds help if I don’t keep up my lifestyle changes (work less, rest more). I hope at least some of these ideas help you. I will try to think up more and maybe do a blog post later on, so you can refer to that if needed. But frankly, when everything hurts all at once and bad enough, I almost always need the tramadol in combo with heat, tens, and rest to bring it back down to manageable levels. So I am forever in awe of people who manage their pain with only alternative methods.
Finally, I completely understand your apprehensions regarding the senate healthcare bill, and I don’t blame you for not wanting to add another pre-existing condition! I have trepidations about it myself, esp since I am about to lose the lose health insurance when I graduate, and will probably not get on immediately onto an employer plan. You may still want to speak with you GP anyway, though, if they can do something for your pain. If you have other conditions that may also lead to the pain, they may be more inclined to go with that than otherwise. I hope you can find some relief! ❤ Take care!!
LikeLiked by 1 person