Aa
chronic undiagnosed issues
I'm a 37 yo female. I started having issues about 8 months ago and ended up in the ER in November because I thought I was having a heart attack. I have seen 2 different cardiologists, had numerous cardiac testing (including a second trip to the ER) and everything appears to be normal, other than benign PACs.
A few weeks after the first ER trip, I developed tension headaches and inner ear pain (which I still have). I went to physical therapy for a few weeks in March-April and felt a little better but the relief was short lived (I started going again last week). I'm getting headaches and neck pain again (I had a brain MRI in Feb and it was normal), my back and shoulders ache, I get weird random pinching aches all over by body (for instance abdominal pain, pain in arms and legs, etc), I am just completely exhausted all the time, and I feel spacey and stupid a lot, and I've lost about 25 pounds since December without dieting or doing much exercise.
The second trip to the ER a few weeks ago gave me a diagnosis of costochondritis--which is a terrifying feeling when you're also dealing with palps.
I've had tons of blood tests, thyroid tests, mammogram, pelvic ultrasound, ekgs, ecg, brain MRI, holter monitors, event monitors -- everything is always "normal" which is great but I'm wondering if it's fibro. I was at my primary doctor the other day and she is running more strange blood tests (can't even remember what they're called) including a celiac test, plus over the weekend I'm doing a 24 hour urine test. Next week I'm having an abdominal ultrasound. She said if those all come back normal, she will refer me to a rheumatologist. I'm at my wit's end, fed up with feeling unwell, and was even crying in her office this week. I don't know what to think!
A few weeks after the first ER trip, I developed tension headaches and inner ear pain (which I still have). I went to physical therapy for a few weeks in March-April and felt a little better but the relief was short lived (I started going again last week). I'm getting headaches and neck pain again (I had a brain MRI in Feb and it was normal), my back and shoulders ache, I get weird random pinching aches all over by body (for instance abdominal pain, pain in arms and legs, etc), I am just completely exhausted all the time, and I feel spacey and stupid a lot, and I've lost about 25 pounds since December without dieting or doing much exercise.
The second trip to the ER a few weeks ago gave me a diagnosis of costochondritis--which is a terrifying feeling when you're also dealing with palps.
I've had tons of blood tests, thyroid tests, mammogram, pelvic ultrasound, ekgs, ecg, brain MRI, holter monitors, event monitors -- everything is always "normal" which is great but I'm wondering if it's fibro. I was at my primary doctor the other day and she is running more strange blood tests (can't even remember what they're called) including a celiac test, plus over the weekend I'm doing a 24 hour urine test. Next week I'm having an abdominal ultrasound. She said if those all come back normal, she will refer me to a rheumatologist. I'm at my wit's end, fed up with feeling unwell, and was even crying in her office this week. I don't know what to think!
could this be fibro?
Hello all, about a month ago I woke up with a stiff lower back. Since then I been having random pains , it's so hard to explain. Most pains are dull and it could be in my leg, shins, ankles ,feet. I remember one night my feet was burning so bad. Sometimes it's a tingling sensation. Lately theres been pain in the upper extremities, most pains come and go . It last for a second that goes somewheres else. I still have the stiff back I can feel it when I bend, I've also been waking up stiff, could this be fibro? Did anyone else start like this,? I havnt been diagnosed I seen 5 docs since this all started and they think I'm crazy. Please let me know as this is nerve wrecking . Thank you all !
Hello all, about a month ago I woke up with a stiff lower back. Since then I been having random pains , it's so hard to explain. Most pains are dull and it could be in my leg, shins, ankles ,feet. I remember one night my feet was burning so bad. Sometimes it's a tingling sensation. Lately theres been pain in the upper extremities, most pains come and go . It last for a second that goes somewheres else. I still have the stiff back I can feel it when I bend, I've also been waking up stiff, could this be fibro? Did anyone else start like this,? I havnt been diagnosed I seen 5 docs since this all started and they think I'm crazy. Please let me know as this is nerve wrecking . Thank you all !
I just wanted to update this post. Nothing ever came of these tests. My catecholamines were tested and retested and were "normal". Every test I've ever had is normal, which is great.
My doctor sent me for an abdominal ultrasound because I was having diarrhea about once a week for a while and it found some benign hemangiomas on my liver and a gallstone, which was confirmed by an abdominal MRI.
So basically, I've sort of given up on doctors. I've been on klonopin for anxiety for a few months now, and I feel like I'm kind of "settling down". I also started a yoga class once a week which has helped tremendously with my headaches. Body aches and costochondritis seems to be finally letting up over the past few weeks (no jinx!). Still have occasional palpitations though.
That's where I'm at right now.
My doctor sent me for an abdominal ultrasound because I was having diarrhea about once a week for a while and it found some benign hemangiomas on my liver and a gallstone, which was confirmed by an abdominal MRI.
So basically, I've sort of given up on doctors. I've been on klonopin for anxiety for a few months now, and I feel like I'm kind of "settling down". I also started a yoga class once a week which has helped tremendously with my headaches. Body aches and costochondritis seems to be finally letting up over the past few weeks (no jinx!). Still have occasional palpitations though.
That's where I'm at right now.
Thank you :)
I've been getting better at telling myself that nothing is wrong, that it's simply muscular aches and not a heart attack. I also have benign palpitations, which just makes it harder to relax about everything. Pain and palps does not feel good!
My psychiatrist said I was "struggling with a touch of hypochondriasis" because I told her that I had almost become obsessed with my health. Every little thing that I felt was causing me to panic. I think I would call it more of a "health anxiety" rather than "hypochondria", you know? But like I said, I am getting better at talking myself out of panic. Now I'm struggling more with feeling spacey because I've always considered myself to be pretty sharp ;)
My general doctor called today and said the results of the blood test showed my dopamine levels were a little high. She wants to wait until the results come in from the 24-hour urine tests (supposedly they're more sensitive or accurate) and if that shows elevated levels, she will set me up with an endocrinologist. Hopefully I'll find out more by the end of the week.
I've been getting better at telling myself that nothing is wrong, that it's simply muscular aches and not a heart attack. I also have benign palpitations, which just makes it harder to relax about everything. Pain and palps does not feel good!
My psychiatrist said I was "struggling with a touch of hypochondriasis" because I told her that I had almost become obsessed with my health. Every little thing that I felt was causing me to panic. I think I would call it more of a "health anxiety" rather than "hypochondria", you know? But like I said, I am getting better at talking myself out of panic. Now I'm struggling more with feeling spacey because I've always considered myself to be pretty sharp ;)
My general doctor called today and said the results of the blood test showed my dopamine levels were a little high. She wants to wait until the results come in from the 24-hour urine tests (supposedly they're more sensitive or accurate) and if that shows elevated levels, she will set me up with an endocrinologist. Hopefully I'll find out more by the end of the week.
I'm really sorry to hear you are going through so much uncertainty and pain. My story is somewhat similar to yours. It started in my early 30s and now I'm 39. It took around 8 years and a ton of tests and different doctors to finally get a diagnosis. My pain was similar to some of the things you described. I went to the ER twice for chest pain and after multiple tests they also told me it was Costochondritis. In my case the Costochondritis flares up (from lifting something too heavy or stretching the wrong way, certain PT exercises, etc.) but then the anxiety of wondering "Am I having a heart attack?" makes the pain more intense. It's like a loop. Each thing feeds on itself until you are in full-blown panic attack mode. I get it, I've been through it. Oddly, now sometimes when I have what seems to be Costochondritis pain, I take an antacid (for heartburn) and it actually helps - sometimes that's all it is. Costochondritis, reflux, and weird chest pains are hard to differentiate. Getting anxious just intensifies it. You had all the heart tests, so you can rest assured your heart is fine. That knowledge will hopefully relax you the next time the pain starts. Remind yourself that it's not your heart.
You wrote... "my back and shoulders ache, I get weird random pinching aches all over by body (for instance abdominal pain, pain in arms and legs, etc)"
I get these pains too. To me, it does sound like Fibromyalgia, but I'm not a doctor.
Fibromyalgia is still basically a diagnosis you get after everything else more serious has been ruled out. And unfortunately it takes a lot of tests to rule stuff out. You seem to have had them all. So, I would definitely suggest seeing a Rheumatologist next (one who actually believes in Fibro - some don't).
As far as the anxiety and your psychiatrist... did a doctor tell you that you are a hypochondriac? Did someone else tell you that? Listen to me... You are not a hypochondriac! You are not imagining the pain you are having, or the exhaustion, or the spaced-out feeling or any of the other stuff. YOU ARE HAVING A NORMAL REACTION to all this crazy stuff you are experiencing. Ok? Really. I'm serious. Don't let them tell you it's all in your head. Sure, anxiety can make pain worse, but anyone would be feeling anxiety after all you've been through!
On the brighter side, I am glad your doctor is taking you seriously enough to order these tests and rule things out. Some doctors will simply throw meds at you and be done with it.
Definitely keep copies of all your test results. Keep them organized. You will need to refer to these down the line.
Hang in there.
You wrote... "my back and shoulders ache, I get weird random pinching aches all over by body (for instance abdominal pain, pain in arms and legs, etc)"
I get these pains too. To me, it does sound like Fibromyalgia, but I'm not a doctor.
Fibromyalgia is still basically a diagnosis you get after everything else more serious has been ruled out. And unfortunately it takes a lot of tests to rule stuff out. You seem to have had them all. So, I would definitely suggest seeing a Rheumatologist next (one who actually believes in Fibro - some don't).
As far as the anxiety and your psychiatrist... did a doctor tell you that you are a hypochondriac? Did someone else tell you that? Listen to me... You are not a hypochondriac! You are not imagining the pain you are having, or the exhaustion, or the spaced-out feeling or any of the other stuff. YOU ARE HAVING A NORMAL REACTION to all this crazy stuff you are experiencing. Ok? Really. I'm serious. Don't let them tell you it's all in your head. Sure, anxiety can make pain worse, but anyone would be feeling anxiety after all you've been through!
On the brighter side, I am glad your doctor is taking you seriously enough to order these tests and rule things out. Some doctors will simply throw meds at you and be done with it.
Definitely keep copies of all your test results. Keep them organized. You will need to refer to these down the line.
Hang in there.
I took a list of all my symptoms to my dr visit last week. I wrote down everything that was bothering me, whether they seemed like they could be related or not. She said she really didn't know what to make of it, which is why she ordered all sorts of weird tests (like I said I can't remember what they're even called!) When I developed headaches in late December, I also started with a bad bout of anxiety because I was sure something was seriously wrong--disproven by all tests but I am still suffering slightly from anxiety. So I'm not sure if it's medical or mental. I mean, I am actually feeling pain (today I woke up barely able to stand due to lower back pain) but I'm not sure if the pain is triggered by anxiety or the anxiety is triggered by pain; or both. I have been seeing a psychiatrist who prescribed anti-anxiety meds, but she's not really helping with the hypochondriasis. I'm actually considering seeking out a new psych.
wow! What a mess.u poor thing...
I was lucky when they finally figured out what it was. My suggestion is you start taking a folder just for you, place all of the symptoms down with date time etc,..last for a copy of whatever the doctor did on that or say .use both of this during your visits ,.did u tell ur dr? Lmk...
I was lucky when they finally figured out what it was. My suggestion is you start taking a folder just for you, place all of the symptoms down with date time etc,..last for a copy of whatever the doctor did on that or say .use both of this during your visits ,.did u tell ur dr? Lmk...
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