I apologize if we are friends on FB/in other groups/IRL and you've heard this whole spiel about my health already.
I'd just like to get some feedback/advice from people who have been there - tell me how you got through a mystery illness or maybe it really *was* anxiety or how you got doctors to listen to you or give me some hope about how your mystery problem cleared up on its own!
Long, long story short (leaving out tons of details): In January of last year, my eye hurt. Two doctors found nothing, so I let it go. It apparently healed on its own after a month.
In late fall, I get the flu and never really recover after it. My eye starts to hurt again, turns into full blown headache, then a daily headache and dizziness, general flu feeling, shortness of breath, and it goes on and on. From the beginning of December to now, I have had a headache and other symptoms every day. (I had a clear MRI and good bloodwork for the record - I've seen ENT, PCP, rheumatologist, headache specialist, etc)
I can still work and I love my job - but I need to be 100% for it! I am getting tired of being sick and tired and I'm sure my fam and friends are tired of hearing about it.
I am not depressed or anxious - except about my health issue. I *am* still grieving the loss of my husband and probably will on some level for a long time.
I know the mind is powerful, but I feel this truly is a real illness I have. Every single doctor I see, when they find out my husband died 3 years ago (while taking a history), dismisses it as "anxiety" or says that "You've been through a lot." I agreed to try two different anti-depressants - it made me better able to deal with the illness but all the symptoms are still present.
Before this, I have been so lucky to never in my life have chronic pain or an illness that doctors couldn't fix up.
I'm posting today because I wasted yet another co-pay on a doctor that told me it was anxiety and/or my grief manifesting itself physically and there wasn't anything he could do for me besides let it go away on its own, eventually. I was crying in the car on the way home because I'm tired of not being taken seriously as a young woman. And I've spend a few thousand dollars on tests and meds and still have no improvement.
I feel like, as soon as doctors see "widow" or "history of anxiety" (which is true) - they dismiss any problem you have. Anything I can say to them to make them understand?
I'm also trying alternative things - clean eating, food diaries, journaling, am willing to go back to a counselor, meditation, Dr. Sarno's book on healing your pain - heck, even planning a trip to a warm place to see if it is weather related! So you know, give me any wild ideas/encouragement/advice/personal stories you have - you ladies are very smart and have always been people I looked up to. I appreciate it!
Update: Long long long story short - physical therapy took away the headache. A chiropractor (I was previously very skeptical) took away the other weird symptoms - dizziness, twitching, etc.
I *still* get headaches and symptoms if I don't go to the chiropractor or don't spend enough time lying down - like if I get a short night of sleep, I am more affected. But I am fully functional now and have been at at least 70% since May and 100% since August as long as I stay on top of it.
Possible diagnoses are SCM muscle problem or atlas/vertebrae out of place, or maybe a combo of being out of alignment and then the muscle pulling. I believe - my theory - that I have a pinched nerve and my artery is being pressed on by muscle/bone when I am upright and it eases off when I am laying down.
However, as a result of my involvement with the podcast, I am getting an angiogram on my carotid artery to make sure I don't have a dissection. I doubt the test will show anything - since my problem is when upright and the tests are done while lying down.
Sooo - it is open-ended. Podcast should be updated when they know more.
The podcast is called "Reply All." And don't judge me too harshly for it - I was emotional about things that were brought up, especially my late husband's passing and I was also nervous. There are a ton of grammar mistakes too which I am kicking myself for.
I have learned so much - I have so much more empathy/sympathy for people with chronic pain whereas before I was dismissive of it. I have been humbled by my experience and realize that the body is a mystery and we don't have all the answers.
I went through this for 10 years before being properly diagnosed with celiac. I was told it was stress. I was referred to a therapist because sometimes "emotional distress manifests physically". Finally I saw a doctor whose brother has celiac and she recognized it right away and ordered the right tests.
It is horrible and I am sorry. Women are often NOT taken seriously at all. We're all hysterical!
Someone on here (LovesTrains?) has a not so common condition that I think was identified by a neuro-ophthalmologist. Not that you have this specific condition, but since it began with your eye, I would consider seeing an eye specialist. And if the "maybe it's anxiety" thing comes up, I would straight up tell them that you have had your concerns dismissed by multiple doctors and that you aren't interested in a repeat.
I will say that my eye doctor is the ONLY one who didn't say "stress" - she said it wasn't anything on her end (the eye) but it could be something circulatory system related.
I struggle with advocating for myself and being confident. I cry because I know the visit is coming to an end and I will be going home again with no answers. (And sometimes these appointments I have been waiting for for three months! So it will be a LONG time until I can get another one).
Also, I do still cry when my husband's death is brought up and I have to explain it, what happened, was it sudden, how long were you married. It's upsetting, especially when I am already not feeling well physically and I then know we are going down that road again into "you poor thing, you've been through a lot. Are you socializing? Going out and dating? Do you have any kids?" Look, I don't just pay you money for an office visit to talk about my feelings and get attention (which is what I am convinced they think - one of the notes in my chart hurt my feelings). I have spent $4000 thus far to find out it's "migraines" or "anxiety" so I'd like a little more for my dollar.
I keep thinking that a man would be taken more seriously. Or someone with better insurance
This has been suggested to me a few times. I feel really foolish because I am functional, able to walk around and work, and since I've had this in some form or another for a year (with daily problems for 3 months) - I feel it isn't life threatening. It does effect my quality of life.
I live in an area with decent hospitals. I don't love some of the providers I am able to see with my insurance and with scheduling through BigCity Hospital System (i.e. takes 3 months to see a doctor, have to see them in a dingy/run down office, etc)
I'd love to hear if anyone has had experience at the Mayo Clinic. It is far from my house and I'm sure going would get the eyeroll from my family and current doctors.
Is your eye doctor an optometrist or ophthalmologist?
I've seen (in the past year) 2 optometrists and 1 ophthalmologist. I've had a total of probably 8 eye visits, got new glasses, tried to get new contacts (I can no longer wear a contact in my affected eye so haven't picked them up yet)
I am considering a neuro-opthamologist but there's only 2 in my city covered by my insurance and I doubt my PCP will make a referral. And after crying in a specialist's office today when he/she asked at least 5 questions about my husband's death and gave me that patronizing look - I just feel I would be wasting a specialist's time. It's so demeaning to have this great and knowledgeable doctor, a professor at the med school even, kindly and gently tell you while holding your records that he/she can't help you, even though he/she sees a ton of difficult cases in his profession, and he/she has no idea why you are in the office when you obviously don't need a rheumatologist. "Why are you here?" was the exact question asked that made me feel small.
So my PCP isn't real big on referring me to places and I've been doing it on my own because I don't need a referral for my insurance. But I feel I am not qualified to be making these inquiries to these doctors since it is just me over here Googling to try to figure out "Well, maybe it could be auto immune!" or "That sounds like my symptoms - maybe it's vasculitis"
I am so sorry. I had a year where I went to my primary, the ER, a cardiologist, a pulmonologist, a gastroenterologist, etc., and nothing was found and they all declared anxiety. Only I wasn't anxious about anything except how I was feeling! Finally, I figured out on my own after food journaling that it was a weird new caffeine allergy or sensitivity. It never occurred to me because I'd always been fine with caffeine (and I am fine again now with it). But for a couple of years, anytime I'd have more than a certain amount, I felt faint and hot, my heart raced and I couldn't breathe. I later found out the same exact thing happened to my dad.
I am so sorry you are going through this. Getting no answers and feeling like you're being ignored/dismissed is the worst.
Have you talked to a psychiatrist? I wonder if they would be willing to be your ally that this is not traditional anxiety, but appears to be a physical health problem, and maybe they could suggest another doctor/specialist?
I'm sorry you are dealing with this. My advice is to write it all down - dates, symptoms, any medication/illnesses. When you see the dr, you have a clear this is what I'm dealing with here. I also find this keeps me from getting distracted and forgetting something.
Advocating for yourself can be hard. Don't be afraid to say "I feel like I'm being dismissed here and something is not right." I've struggled with it myself when I'm in the thick of things and have gone with my sister to an appt when she was in the thick of it and being dismissed.
If you haven't seen a neurologist, that would probably be my next stop.
Post by orangeblossom on Mar 5, 2015 6:39:22 GMT -5
If you don't need a referral, I would seek out the neuro-ophth on your own. Call first, and only if they say you need a referral woukd I bother getting one. The only good thing a PCP referral will do, when you don't need one, is to get you uin sooner and manage any records that need to be sent there. Yes, there are benefits to that, but if your PCP is hesitant, then I would bypass them.
Also, I might consider getting a new PCP. I've had some strange illnesses through the years, and my PCP has never said its psychosomatic, and I've had plenty of things to stress me out.
I hope you get some answers soon. As for doctors who insists it's the grief from your husband's death causing these issues, cut them off at the knees and say, "No, I don't believe it is anxiety-related, can we discuss the symptoms I am here for". If they persist, say "thanks you for your time, but this isn't helpful. Goodbye".
As someone with chronic pain, I hear you. And I don't think it's just women who are patted on their head in doctor's offices. Anytime it's chronic pain (which doesn't show up in a test) doctors just don't seem to know what to do with it. My dad and uncle also have the same chronic pain condition I have (obviously genetic) and they're spoken to condescendingly, too. It just sucks. I wish more doctors had training to literally say "I don't know what's wrong with you and I'm very sorry about that." And not try to make it about the patient being crazy, stressed, or "just trying to get out of gym class" as one of my doctors said when I was in chronic pain in middle school.
Have you heard anything about biofeedback? There's some good evidence about its success with treating migraines. You literally learn how to train your muscles to relax.
Post by southerngirl on Mar 5, 2015 7:42:46 GMT -5
I'm so sorry you are having trouble getting diagnosed. It took years and a long list of specialist to diagnose my mysterious illness and then longer to start actually treating it.
I would definitely find a doctor that listens to you and commits to finding a cause. Such as "ok dr, let's try the anti depressants for xx time and I'll be back to reevaluate and try something new if that doesn't work".
My neuro does this with me. I haven't had a real test that should have been performed to confirm my diagnosis, but I am responding positively to the meds for that so it confirms that is the problem.
With that being said, I have dysfunction of the autonomic nervous system. It will not show on any of the test you had done, but causes all the symptoms. Of course it could be any other number of things, but this is what I have experience with. You can go to your local drugstore and ask that they read your blood pressure and heart rate after sitting for 10 minutes. Stand up, and ideally check it again every 2 minutes for 10 minutes. A normal response will show a slight increase in bp and heart rate after you stand up. An abnormal response will show a heart rate increase of >30 bpm after standing, or a drop in blood pressure after standing. I cried too so many times and I was just dealing with my weird symptoms. I hope you get real answers soon.
Hi yes I have intracranial hypertension. It manifests with dizziness, nausea, headaches, etc. You would have a clear MRI. It is more common in obese women but does occur for normal weight women. If you saw an opthalmologist the first thing the would note is a swollen optic nerve which they see when they dilate you.
I see a neuro-opth out of mass and eye in Boston now for it. He is one of the best. But if you don't have papillodema that's not what you have. It is hard because I feel sick often and ppl don't get it bc I look fine.
And so "why are you here" is a standard opening I have heard from specialists. They want you to describe symptoms. I don't think it's supposed to be patronizing. And I have a rare but easily diagnosed disease and am seen by specialists interested in that disease.
If you feel you have a hard time advocating for yourself, is there someone who can go with you? Either just to have someone else on your side so you feel more confident, or even to actually speak up for you when the doctors start to go down the "Oh.... your DH..."?
And so "why are you here" is a standard opening I have heard from specialists. They want you to describe symptoms. I don't think it's supposed to be patronizing. And I have a rare but easily diagnosed disease and am seen by specialists interested in that disease.
Oh, I am totally fine with "why are you here today?" Or "what brings you in?" I get irritated with the tone I have heard on "why are you here?" with a dismissive look, holding the chart in crossed arms.
I don't have papillidema but I'm sorry that you too have a headache type illness. Mine weirdly goes away when I lay down - sort of the reverse of ICH.
I would keep a food, exercise and stress journal for a couple of weeks to see if there area any correlations. Then, if you need referrals, I would go back to your pcp and share the journals with him/her. Explain that you would like to see a specialist again since your symptoms are getting worse and ask them which specialist you should be referred to. If that doesn't work, then find a new PCP.
If you're not happy with the care that is local to you, you could also try going to a bigger hospital system if that is available to you within a reasonable distance.
Unfortunately doctors don't always have the answers, but hopefully someone will work with you to listen to your concerns. Hope things improve.
I don't really have any good advice but wanted to say to for you for sticking with this when you know something is just not right; I'm sure that's hard when no one is being as helpful or as encouraging as you would like and probably as they should be. I hope you are able to find answers soon (hugs)
I don't have specific advice for your situation, but huge hugs. My H went through something similar - horrible, constant nausea for 1.5 years before someone finally decided to run a HIDA scan and found out his gallbladder was completely nonfunctional.
They attributed it to stress and anxiety because he has a legit phobia of throwing up (boy that was a fun 1.5 years), had just graduated and started a new job, and was engaged.
I don't know anything about your eye issue, but I encourage you to be persistent and keep seeing people until someone really listens. I don't think you are crazy.
If you feel you have a hard time advocating for yourself, is there someone who can go with you? Either just to have someone else on your side so you feel more confident, or even to actually speak up for you when the doctors start to go down the "Oh.... your DH..."?
Good luck. I'm sorry you aren't getting answers.
this is an idea I had as well. I am sorry kwynn. I hope you get answers soon.
I went through this for 10 years before being properly diagnosed with celiac. I was told it was stress. I was referred to a therapist because sometimes "emotional distress manifests physically". Finally I saw a doctor whose brother has celiac and she recognized it right away and ordered the right tests.
It is horrible and I am sorry. Women are often NOT taken seriously at all. We're all hysterical!
Same here except mine was 3 years before being diagnosed with celiac.
It is depressing to be constantly feeling like shit. I stopped talking about my problems with my friends and just talked to my doctors and husband to avoid people getting sick of hearing about it.
I would encourage you to be your own advocate and if a doctor can't give you an answer go to another. Is there a close friend or family's member that can go with you? Also a thought, writing down all your questions or concerns before the appointment and make sure you ask them
I feel so much better now that I know my diagnosis and hope you get the same.
I went through this for 10 years before being properly diagnosed with celiac. I was told it was stress. I was referred to a therapist because sometimes "emotional distress manifests physically". Finally I saw a doctor whose brother has celiac and she recognized it right away and ordered the right tests.
It is horrible and I am sorry. Women are often NOT taken seriously at all. We're all hysterical!
Ditto all of this except i'm undiagnosed celiac. I couldn't take it anymore w/the docs not believing my symptoms and telling me to do yoga so I started doing my own research and did an elimination diet. The progress in a month was amazing and now i'm a year and a half gluten free and it's a complete 180 in my health. By the time I followed up with the doc afterwards and told her how much better I was feeling she refused to send me for testing because she didn't want me to regress back to bad health, and said I should consider myself undiagnosed celiac. My main symptoms are occular migraines, headaches, joint pain, and brain fog when I get glutened (but when I was sick I had all of the classic celiac symptoms plus more).
Prior to taking matters into my own hands, I was told that I had anxiety and was put on anxiety meds too, which did nothing for me except make me gain 10 pounds. It is so frustrating.
Keep up with the food diary. I had a bout of illness with headaches, nausea, upset stomach, and frequent need for the bathroom back in my early 20s. I was tested for a bunch of gastrointestinal issues to no effect. I felt like a pincushion from all the tests. My then PCP recommended counseling thinking it must be anxiety. My only anxiety was this weird health issue. I saw a counselor which was okay, but the weird health issue did not go away. I found a new PCP and she started me with a food diary. I found out that I was reacting when I was eating certain foods...almonds and blue cheese. I have allergies--weirdly specific allergies. When I don't eat those foods, I don't have gastro intestinal issues. If I had not seen a new PCP, I would not have ever figured this out. It took a while...about five or six months to figure it out because the allergies are so weirdly specific.
Having been there...I am pulling for you! Keep going.
I've had orbital psudeotumor/idiopathic inflammatory orbital disease. When you said your eye hurt, it reminded me of that. But, something would have been seen on your optic nerve and it does show up on MRIs (with contrast). And it progressed over about 2 weeks to double vision and swollen eyeballs.
For what it's worth, I do believe I got that as a physical manifestation of stress bc it happened in the middle of a very stressful time. My neurologist brushed that off though. I hated him thought and I ended up in nuro-ophthalmology.
I hope you find something. My SIL has been dealing with mystery gastro issues for years. She ended up at a local branch of the mayo clinic and she said they were the first to take her seriously in awhile. She had gotten to the point all her other doctors were saying it was anxiety. That said, I haven't heard if anything had improved.
I would also recommend seeing a neuro ophthalmologist. You wouldn't necessarily need to be feeling stressed or anxious for a psychosomatic presentation.
This has been suggested to me a few times. I feel really foolish because I am functional, able to walk around and work, and since I've had this in some form or another for a year (with daily problems for 3 months) - I feel it isn't life threatening. It does effect my quality of life.
I live in an area with decent hospitals. I don't love some of the providers I am able to see with my insurance and with scheduling through BigCity Hospital System (i.e. takes 3 months to see a doctor, have to see them in a dingy/run down office, etc)
I'd love to hear if anyone has had experience at the Mayo Clinic. It is far from my house and I'm sure going would get the eyeroll from my family and current doctors.
I went to the Mayo Clinic when I was younger, around age 8 or so, because of some weird bumps on my skin that would show up randomly. I don't know what the outcome was, but the bumps went away eventually. I have a couple family members and friends that have gone there. They are phenomenal.
I think a food diary is a good idea, allergies and sensitivities can occur as an adult. Have you tried acupuncture? Or a chiropractor? Lots of people have success with those.
So sorry you are dealing with this. Is it totally unethical to not bring up your DH? I really hate that doctors are assuming all your issues relate to what you went thru with your DH.
An aquaintance was dismissed for 14 months of complaints of pain. Was set to see a psychiatrist because all docs told her it was psychosomatic. Pushed for one final round of testing. And I won't go into detail but let's just say it was NOT psychosomatic and she is currently in treatment now.
I wish you peace and answers for your ailments. Good luck!
I know the mind is powerful, but I feel this truly is a real illness I have. Every single doctor I see, when they find out my husband died 3 years ago (while taking a history), dismisses it as "anxiety" or says that "You've been through a lot." I agreed to try two different anti-depressants - it made me better able to deal with the illness but all the symptoms are still present.
This stands out to me because in a somewhat similar situation (constant headaches, shortness of breath, exhaustion, but no eye pain) my diagnosis was stress. This wasn't said in a patronizing way, but some kind of stressor - probably a combo of virus + some work stress - had caused my body to get into a loop of headache -> tightening muscles against the pain -> tight muscles causing headache -> repeat. It's not an either/or situation where either it's your emotions or you have a physical condition. I don't mean to downplay any condescension you've faced, but depending on tone and context, being told your condition is anxiety may not be a dismissal, and that may just be how you need to attack the problem.
That said, amytriptiline fixed me in that case, and if they've already tried that as one of your ADs then obviously it's unfortunately not the solution for you.
Have you considered any alternative treatments? I have had good experiences with acupuncture, osteopathy and chiropractic treatments for various pain problems, and while I know some people are skeptical, at your stage I'd be willing to try almost anything.
Ditto wandering's advice about keeping a journal. This is the only way I could convince the docs there was something going on with my bladder (as opposed to pain from fibroids or colon spasms). When I went in armed with a month's worth of every morsel I ate and drank, how much I urinated, and when/how severe the pain was, I was finally sent for more in-depth evaluation and was diagnosed with interstitial cystitis (this was many years before it became more well known).