Aa
Apparently, It's All In My Head ...
I had high hopes for rheumy #3. After all, a friend says he diagnosed her with a rare form of arthritis after docs at Johns Hopkins and Boston hospitals failed for 10 years to figure out what was causing her extreme pain and fatigue. And now she (mostly) feels great thanks to Enbrel.
She urged me to see him, even though I said I'd already had every test under the moon to figure out what's wrong with me. I have a variety of abnormal test results, but they don't point towards a single, unifying diagnosis, something all the docs I've seen have trouble overcoming. (What? You think you could have TWO things wrong with you? Impossible!)
So the new rheumy spends 45 minutes or so taking down an abbreviated medical history of my nearly three year ordeal. Then he tells me to change into a gown and, after a 30 minutes (!) break, he comes back to do a physical exam.
About 15 minutes of exam, he then sits down to start a monologue, which he refuses to allow me to ask questions as he goes (and I'm so exhausted that I can't even remember everything I want to question by the time he's done talking, 20 minutes or so later).
I had expected him to want to think about my complicated case, perhaps request some of my medical records from various specialists I've seen.
But no. He said that because the 6-to-8 abnormal objective findings don't add up to a clear diagnosis, the answer is obviously a very complex form of fibromyalgia. He says there's a chance that I have a very complex case of FM *and* lupus, but he strongly believes that even if they treated the lupus, the vast majority of my symptoms would continue to exist because they stem from that "very complex case of fibromyalgia."
Oh, and guess what? There's a guy in Medford who has a revolutionary *cure* for fibromyalgia. No, there don't seem to be any studies that back up this guy's theories, but he has lots of testimonials on his website.
So I asked why, if this guy found a cure for FM, aren't there lots of studies duplicating his results? Why aren't *all* doctors curing their FM patients following his magical psychotherapy techniques?
Sigh. Well, that got me a short lecture on the mind-body connection (which I do believe exists -- but not in a way that can change my blood test results).
When I told him that my other doctors have downplayed the possiblity of fibromyalgia, at least as a sole diagnosis, due to things like my elevated SED rate and CRP, among other things. He told me those doctors, like me, were focusing too much on the physicality of my illness and not enough on the mind-body connection.
I'm feeling really depressed right now. Sigh. I guess I've really been lucky that this is the first doctor to suggest it was all in my head and what I really need is a special psychotherapist. :-(
She urged me to see him, even though I said I'd already had every test under the moon to figure out what's wrong with me. I have a variety of abnormal test results, but they don't point towards a single, unifying diagnosis, something all the docs I've seen have trouble overcoming. (What? You think you could have TWO things wrong with you? Impossible!)
So the new rheumy spends 45 minutes or so taking down an abbreviated medical history of my nearly three year ordeal. Then he tells me to change into a gown and, after a 30 minutes (!) break, he comes back to do a physical exam.
About 15 minutes of exam, he then sits down to start a monologue, which he refuses to allow me to ask questions as he goes (and I'm so exhausted that I can't even remember everything I want to question by the time he's done talking, 20 minutes or so later).
I had expected him to want to think about my complicated case, perhaps request some of my medical records from various specialists I've seen.
But no. He said that because the 6-to-8 abnormal objective findings don't add up to a clear diagnosis, the answer is obviously a very complex form of fibromyalgia. He says there's a chance that I have a very complex case of FM *and* lupus, but he strongly believes that even if they treated the lupus, the vast majority of my symptoms would continue to exist because they stem from that "very complex case of fibromyalgia."
Oh, and guess what? There's a guy in Medford who has a revolutionary *cure* for fibromyalgia. No, there don't seem to be any studies that back up this guy's theories, but he has lots of testimonials on his website.
So I asked why, if this guy found a cure for FM, aren't there lots of studies duplicating his results? Why aren't *all* doctors curing their FM patients following his magical psychotherapy techniques?
Sigh. Well, that got me a short lecture on the mind-body connection (which I do believe exists -- but not in a way that can change my blood test results).
When I told him that my other doctors have downplayed the possiblity of fibromyalgia, at least as a sole diagnosis, due to things like my elevated SED rate and CRP, among other things. He told me those doctors, like me, were focusing too much on the physicality of my illness and not enough on the mind-body connection.
I'm feeling really depressed right now. Sigh. I guess I've really been lucky that this is the first doctor to suggest it was all in my head and what I really need is a special psychotherapist. :-(
It sounds to me like that doc was coping out because when 'they' don't know what is wrong with you they tell you 'it's all in your head'. I do believe that there is a mind body connection, but I do not believe that just because we want something to happen it does. If it did this forum wouldn't exist.
The hardest thing for us is to exist in this limbo of not knowing. Genetics, diet, exposure to chemicals, etc. etc..I believe also play a part in what happens to our bodies. So far I haven't met many docs that are willing to explore all possibilities.
I'm beginning to think that when it comes to taking care of ourselves, we have to be fearless and trust our instincts more than the docs in order to get the best help. If you feel that you want to explore some alternative belief system...go for it.
They don't live in our bodies. Most of them have no idea what our suffering is all about.
If they can't figure us out in 15 minutes...then it's all our fault? Nuts to that.
Last summer I had a high SED rate and CRP and went to a Rheumy that diagnosed me with Poly Myalgia Rheumatica. A high SED rate and CRP cannot be ignored. Find someone else who help you please. How high is your SED rate?
Hugs to you and everyone, Charley.
The hardest thing for us is to exist in this limbo of not knowing. Genetics, diet, exposure to chemicals, etc. etc..I believe also play a part in what happens to our bodies. So far I haven't met many docs that are willing to explore all possibilities.
I'm beginning to think that when it comes to taking care of ourselves, we have to be fearless and trust our instincts more than the docs in order to get the best help. If you feel that you want to explore some alternative belief system...go for it.
They don't live in our bodies. Most of them have no idea what our suffering is all about.
If they can't figure us out in 15 minutes...then it's all our fault? Nuts to that.
Last summer I had a high SED rate and CRP and went to a Rheumy that diagnosed me with Poly Myalgia Rheumatica. A high SED rate and CRP cannot be ignored. Find someone else who help you please. How high is your SED rate?
Hugs to you and everyone, Charley.
Thanks, everyone!
I don't have words to express how much everyone's supportive reactions mean to me. Thank you so much!
I guess I've just been really lucky that this is the first doctor I've seen who acted like this. I've read about other people having doctors like this, but my regular ones have never acted this way. Sigh.
---SM
I don't have words to express how much everyone's supportive reactions mean to me. Thank you so much!
I guess I've just been really lucky that this is the first doctor I've seen who acted like this. I've read about other people having doctors like this, but my regular ones have never acted this way. Sigh.
---SM
Hi SickMomma..
I am so sorry about your ordeal....It has become the norm around here lately..
The 2 gabage catch all dx seem to be Fibro and Migraines...When the docs cant seem to figure it out it is one of the two or just in our heads...It is very sad!
All my weirdness has been blamed on weird varients of migraines..I dont know if I believe that or not.But I am at a point where I am tired of seeing doctors and having tests done.
I agree that there is a mind body connection.But if you are truely ill you are ill and it does not matter how positive you are you are still ill. I meditate and do everything I can to keep my mind healthy.But after all is said and done I still dont feel good physically.
Please keep on keeping on...
XXXXX Theresa
I am so sorry about your ordeal....It has become the norm around here lately..
The 2 gabage catch all dx seem to be Fibro and Migraines...When the docs cant seem to figure it out it is one of the two or just in our heads...It is very sad!
All my weirdness has been blamed on weird varients of migraines..I dont know if I believe that or not.But I am at a point where I am tired of seeing doctors and having tests done.
I agree that there is a mind body connection.But if you are truely ill you are ill and it does not matter how positive you are you are still ill. I meditate and do everything I can to keep my mind healthy.But after all is said and done I still dont feel good physically.
Please keep on keeping on...
XXXXX Theresa
Hi SickMomma
I am sooooo sorry and sad to read about your latest experience. I agree - of course there;s a mind/body connection, but it isn't in the direct, gross way that most doctors seem to portray. And there's no evidence that the mind can really produce abnormal blood and other measurable tests.
I really get how depressed you're feeling. What can I say but that you know how you feel and you know your body. You are intelligent and sensible enough to be able to identify the physical from emotionally-driven sx. Hold onto that. And that so many more women are also treated in exactly the same, dismissive/ignorant way ...we can't all be nutjobs!
bestest
samxxx
I am sooooo sorry and sad to read about your latest experience. I agree - of course there;s a mind/body connection, but it isn't in the direct, gross way that most doctors seem to portray. And there's no evidence that the mind can really produce abnormal blood and other measurable tests.
I really get how depressed you're feeling. What can I say but that you know how you feel and you know your body. You are intelligent and sensible enough to be able to identify the physical from emotionally-driven sx. Hold onto that. And that so many more women are also treated in exactly the same, dismissive/ignorant way ...we can't all be nutjobs!
bestest
samxxx
i certainly am sorry to hear about your disappointing visit with what seemed to be a potentially promising doc. it is incredibly discouraging and invalidating. like everyone keeps telling me, don't give up--the person who holds the key is out there somewhere.
just out of curiosity--what does OHSU have to offer, or have you already tapped them out?
take good care,
binx
just out of curiosity--what does OHSU have to offer, or have you already tapped them out?
take good care,
binx
so sorry to hear about your experience. i've been there too. despite an abnormal lp and vep, i'm apparently still making it all up. unbelievable, isn't it?
thinking of you.
blod
thinking of you.
blod
Hi,
I'm so sorry....How can abnormal tests be "in your head".........
Again, I'm sorry about your appt. I send you best wishes and happy thoughts ;o)
Jib Jen
I'm so sorry....How can abnormal tests be "in your head".........
Again, I'm sorry about your appt. I send you best wishes and happy thoughts ;o)
Jib Jen
You must join this user group in order to participate in this discussion.
You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
