1. < Bones, Joints & Muscles

Fatigue, activity intolerance, generalized pain... Please help!

Posted by slb07 @slb07, Mar 20, 2012

I am a (previously) healthy 26 year old female. About 6 months ago I began having some tailbone pain and it has progressed despite NSAID therapy. They have ruled out any cysts, I have had a negative sacral and coccygeal xray, and a CT shows a bulge at L4-L5 which my Dr is deeming irrelevant at this time. I read about colon cancer and tailbone pain, and am nervous its something serious. I am always tired, never feel upbeat and full of energy (even if I get 10 hours of sleep per night), have frequent headaches, and have a lot of seemingly unrelated pains. Other than my tailbone pain, I have pain in my ribcage, pain in my upper abdomen at the bottom of my sternum, pain on my sides, and occasional "fullness" or "pressure" in my lower back. I do have a hx of depression and anxiety, and am medicated for that. I just want to feel "normal" again!! My Dr just drew some labs today to check my ANA, CRP, ESR, Rheumatoid Factor, etc... (all tests for inflammation/autoimmune disorders). I feel like I get short of breath and sweaty very easily, and have some generalized weakness, etc... Any suggestions? Please help!! No doctors seem to take me seriously at this point and are making me feel like this is all in my head!

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aglassofsherry | @aglassofsherry | Mar 20, 2012

The dr is probably checking for Lupus. I went through that bloodwork myself and had 1 positive Ana and then 2 negatives , so my rheumatologist thinks I have myofascial pain syndrome. You might want to ask if that is a possible dx?

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3 replies
slb07 | @slb07 | Mar 21, 2012
In reply to @aglassofsherry "The dr is probably checking for Lupus. I went through that bloodwork myself and had 1..." + (show)
@aglassofsherry

The dr is probably checking for Lupus. I went through that bloodwork myself and had 1 positive Ana and then 2 negatives , so my rheumatologist thinks I have myofascial pain syndrome. You might want to ask if that is a possible dx?

Jump to this post

Thanks. I am waiting for a couple other lab results, but my ESR was mildly elevated at 30, my CRP was <5, and my Rheumatoid Factor was negative. I believe the only test I am waiting on is my ANA. My Dr. wants to refer me to a rheumatologist, but I am hesitant to make the appointment without further reasoning other than a slightly elevated ESR. Any suggestions?

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slb07 | @slb07 | Mar 23, 2012

I am being sent to see a rheumatologist next week. My ESR was 30, and my ANA titer was positive at 1:160. Does anyone know, is this considered a high positive, or not so high? I just want to start feeling better!!

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powerofpositive | @powerofpositive | Apr 13, 2012

It is so eay for physicians to make you feel like it's all in your head. Some are so over the top when it comes to thier own egos/self image. It really is an easy way out for themselves. Then because of the treatment from them, anxiety builds...and the cycle begins...and then you have a diagnoses and their all "glad we got to the bottom of this" smoopy, BS. That said...there are some great physicians out there also. Don't give up! Trust your instincts. Keep moving forward. Often times Rhumy issues can wax and wane, blood results also. Keep a diary of symptoms, take your temp, pulse, weight, eating habits, etc.etc. when the symptoms spike. Become your own best advocate...get your medical records on an on going basis, read, read, read...educate yourself as much as possible. This will empower you to speak with providers on a level they are not use to from the general public...and it may help you in many, many ways.....You are your own best advocate...remember that.

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powerofpositive | @powerofpositive | Apr 13, 2012
In reply to @aglassofsherry "The dr is probably checking for Lupus. I went through that bloodwork myself and had 1..." + (show)
@aglassofsherry

The dr is probably checking for Lupus. I went through that bloodwork myself and had 1 positive Ana and then 2 negatives , so my rheumatologist thinks I have myofascial pain syndrome. You might want to ask if that is a possible dx?

Jump to this post

Go to the Rheumy....it is worth the trip.

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Roxie43 | @roxie43 | Apr 20, 2012
In reply to @aglassofsherry "The dr is probably checking for Lupus. I went through that bloodwork myself and had 1..." + (show)
@aglassofsherry

The dr is probably checking for Lupus. I went through that bloodwork myself and had 1 positive Ana and then 2 negatives , so my rheumatologist thinks I have myofascial pain syndrome. You might want to ask if that is a possible dx?

Jump to this post

Hi,
Do you have children? Sometimes childbirth can cause this pain or if you're athletic you could have somehow fractured something but xrays would have shown.
Rheumat..does sound good. Is there is any history of gout or arthritis in the family
Just trying to help..my dad has gout and both parents have arthritis so my dad told me recently when I complained of left toe pain that I should prepare myself because his symptoms started slowly..in my mid 40's not comforting so I cannot imagine being so young
Just leave no stone unturned until you find an answers..
Sincerely,
Rox

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maddiemae | @maddiemae | Oct 22, 2023

I am so sorry for all your suffering. I've suffered fatigue and depression - just a general 'sick.' After visiting 7 doctors a wonderful doctor nailed this problem - there are others - as dysautonomia. I had never heard of it but when I talked to the doc and did some reading a lot was explained. It's not rare but hard to diagnose. A nasty and wicked little disease and it's difficult to fine a doctor who actually knows what it is and how to treat it. And understand I am not in any way saying you have this but some of your symptoms sound like mine.

And I also have a painful tailbone. I've lost 50 lbs. so that might have something to do with it. I had spinal fusion 3 weeks ago on my s1 l5 vertebrae and there is a cluster of nerve roots right there at the tailbone that can cause nerve pain. It's complicated and I don't want to say anything when I really don't know what I'm talking about. My surgery is supposed to relieve the pressure in the cluster of nerve roots. You might check it out. Latin name that I can't think of now. Maybe cuada equina?

My best to you.

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lauracox12 | @lauracox12 | Nov 18, 2023

I have short of breath, dizziness, nausea, and feel like I'm going to faint, it's vasavagal syncope for mewalking

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