Discussions By Condition: I cannot get a diagnosis.

What is wrong with me? Tired and in pain

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • April 25, 2007
  • 06:40 AM

I am in my late 30's and have had severe fatigue since college. I am fine on a light schedule for a few days and then I "crash" and need to sleep longer than usual and will have a hard time waking up. Like 12-13 hours. I also have "fevers" nearly every day that are around 99.3-99.9. With these "fevers" my face and neck get very hot, but I do not get very flushed (turn bright red). I do not think it is hot flashes.
One Dr. 8 years ago thought I had mixed connective tissue disease. I saw one Dr. wrote a dx of fibromyalgia on a billing sheet, but never told me I had it. I had chronic appendicitis (the pain localized and became worse over a period of months) 10 years ago, had appendectomy. A year later I started getting kidney stones at a regular pace ever since (calcium oxalate). I am also overweight (220/ 5'4"), have "regularly occuring" kidney stones (calcium oxalate), extreme fatique, and joint pain. I just found out I have a fatty liver while getting an u/s for my kidneys. I can't say the weight is the problem (though it is not good), because I started feeling crappy and then gained the weight (was normal size, now gained 100 pounds since college).

My lab work is nearly perfect. My Thyroid is always in normal range, though one dermatologist thought for sure I had cushings, but the tests did not prove it. I have perfect cholesterol, triglycerides and sugar. I even passed all of the lab work for getting life insurance. The only abnormal lab tests have been an ANA (1:320 or 1:160 and once 1:80) and a sedimentation rate in the 20's. My B12 was tested a few months ago and it came in low at 287 (normal 200-1100 though anything under 400 is treated). I am now taking B12 shots. I am negative for RA and all of the tests for lupus, scleroderma as of 4 years ago.

I also had low progesterone levels and took prog. supplements to become pregnant. Didn't take them during pregnancy. Had 2 healthy children.

The facial/neck hotness bothers me and I FEEL feverish when this happens. It seems to happen nearly every day now. No one has any explanation, especially since the temp is not above 100.5. I am in pain somewhere in my body every single day. I also have L4, L5 herniations, though that pain has improved. I have also gotten pneumonitis 3 times this year and have had 2 sinus infections with it. My latest malady aside from the pneumonitis is that my thumbs hurt! Not in the joints where my thumb meets the palm, but in the digits. They became swollen and it hurt to hold a pen and affected my handwriting. I had 3 episodes of the thumb swelling/pain this last year. Now, my right thumb clicks when I bend it (end of digit). I also have a lot of flank pain that I know could be from the kidney stones, but now I wonder if it is my liver since it is usually on the right side. Sometimes my tongue gets swollen. My Dr. can not figure that one out. When I was pregnant, my joint pain became severe in my last trimester, but faded somewhat after birth. I have had 2 normal EKG's. I had migraines (with the aura or zig zags in vision) for a year, but for some reason, I have not had one for almost a year.

Are these just scattered symptoms or do I have one disorder? I have not had a lyme disease test nor EBV test. Could anyone recommend any tests I should have done? I don't feel depressed (well, only when I miss an activity because of fatigue), but do take a light dose of zoloft (30 mg) for anxiety since childbirth 2 years ago.

Any suggestions for any of the above would be greatly appreciated!

Reply Flag this Discussion

10 Replies:

  • Sounds like you could have primary hyperparathyroidism. This causes pain in joints, bones and causes kidney stones and other maladies. Get you parathyroid hormone, ionized calcium and calcium levels checked. Also check out parathyroid.com for other symptoms, etc. God bless.
    Anonymous 42789 Replies Flag this Response
  • well i had the same symptoms and they found out it was my thyroid so PLEASE!! Get your thyroid checked out all these syptoms are right on the money!!
    Anonymous 42789 Replies Flag this Response
  • There seems to be more than one thing going on with your health. One thing seems to be some kind of immune problem. Have you been checked for liver and kidney function? Have you seen any specialists, like for auto-immune diseases, endocrinologist?Just because your tests come out normal, doesn't mean they are normal for you. A specialist is more likely to look at the symptoms even if the tests say "normal range."I gotta run and take a kid to an appointment...sorry for so short.Shula
    Anonymous 42789 Replies Flag this Response
  • I have had similar sx for almost 4 years. Yesterday I found what I've been looking for. Check out this site and let me know if it is helpful. As I was reading the list of sx (are there are several) I started to laugh, cry, shake my head and thank God for navigating me in the web in the right direction. The site is called ahummingbirdsguide.com The disease is called Myalgic Encephalomyleitis. It is caused from sporadic outbreaks of a virus. It is similar to Lupus, confused with Chronic fatigue and so on. Please check it out...It strikes women more than men, mid adulthood 25-45...I was 35 when my sx started. I'm off to the dr. this am to see how far I can get. I've been at this for 7 mos already and I think yesterday was my lucky day....Best of luck and please respond back to let me know if the sx sound like you. They sound very similar to mine....mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thank you all for replying. To Unverified: I was tested about 4 years ago for the parathyroid hormone but am not sure about the ionized calcium. I will relook at the results thanks to your reply. Now that I looked it up, I notice one side of my neck (where they feel your thryroid) might have a very small lump. I am not sure, but it feels only slightly different on each side, however, I am pretty sure all my tests for this were OK. At one point I did the cortisol suppression test (15 years ago) and it was normal. Sh24: I think only my TSH and Maybe t4 have been tested, but not the whole panel, so I will as about that, too. Mommy Cat: I briefly looked at the hummingbird site for Myalgic Encephalomylitis. Would you suggest seeing a neurologist for this? A lot of things point to this. What are your specific symptoms, Mom Cat? Please let me know what the Dr. says and what tests were ran, etc. Thank you so much!
    Anonymous 42789 Replies Flag this Response
  • My specific sx are as follows severe abdominal cramps, explosive watery diarrhea, severe facial and upper body flushing, stroke-like episode. I lean to the L my face on L side droops and I am unable to articulate my speech. I get very wet and sweaty with the flushing, feel like fainting and then I vomit. After, I am very pale and chilled to my bones. I have also had sever muscle and joint pain, excessive flatulence, sneezing every day, vivid nightmares, night sweats...I could go on and on. I've been sick for 4 years and just found info on ME yesterday. I'm seeing a neurologist on June 4 and an internal medicine dr on June 21st. There is a part of the above site that tells you about testing for this, most of it immune based as well as PET scan, MRI and so on...let me know...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I read your story and i just had to stop because it made me feel so good that there was someone else goi ng through the same thing im going through! I am only 16 and have had these symptoms for about 4 years now. Tired, joint pain, horrible rib pain, and bad headaches! Year after year doctors have said "oh your tests came back in the normal range, just keep taking those thyroid pills and you should be better in a couple of months." Yet i kept getting the same results... Which was no change at all! There comes a time where i would just get fed up with all of these false positives. The doctors even told me that i had to stop climbing, which was my only stress reliever! Through this experience i have learned to trust God a lot more, its hard sometimes, but i try! I was just wondering if you have been tested for parasites or anemia? Worth a shot! I read one of the replies that was posted and it said something about Bipolar Disorder. I had to shake my head on that one! I hate it when people say that you need help, or you sound crazy. Please dont let that bother you, you are not bipolar! Well its great that you have two healthy children. keep your chin up! There will be an answer soon, just have trust that it is on its way! Thank you so much for your story! God Bless :)
    gettin' there 3 Replies Flag this Response
  • I read your story and i just had to stop because it made me feel so good that there was someone else goi ng through the same thing im going through! I am only 16 and have had these symptoms for about 4 years now. Tired, joint pain, horrible rib pain, and bad headaches! Year after year doctors have said "oh your tests came back in the normal range, just keep taking those thyroid pills and you should be better in a couple of months." Yet i kept getting the same results... Which was no change at all! There comes a time where i would just get fed up with all of these false positives. The doctors even told me that i had to stop climbing, which was my only stress reliever! Through this experience i have learned to trust God a lot more, its hard sometimes, but i try! I was just wondering if you have been tested for parasites or anemia? Worth a shot! I read one of the replies that was posted and it said something about Bipolar Disorder. I had to shake my head on that one! I hate it when people say that you need help, or you sound crazy. Please dont let that bother you, you are not bipolar! Well its great that you have two healthy children. keep your chin up! There will be an answer soon, just have trust that it is on its way! Thank you so much for your story! God Bless :) Hi gettin there, Thanks for the reply. Actually had bipolar ruled out....wish I had the energy some bipolars seem to have, though:). I did not see that reply of Bipolar, though. For many years, though, I thought most of my symptoms were due to depression. I had a terrible depressive episode when I was your age. I just shrunk my world to my room and didn't go anywhere. Being a teenager without any life complications is hard enough! The good thing to know about being a teenager....is that you'll grow out of it!!!!! Well...not tested for parasites. Anemia....I have a b12 deficiency. I think my Iron has been OK. I hope you are feeling OK! Just b/c you are 16 does not mean Dr.'s should not take you seriously. Yes....sometimes you have to ultimately put your trust in God. I wish you well, gettin there....take care.
    Anonymous 42789 Replies Flag this Response
  • I had lots of the same symptoms. Please order the book Health, Hormones and Happyness By Dr. Hotze. Maybe on Amazon? Anyway, just bc your t4's and t3's are fine doen't mean you don't have a thryroid disorder. Read the book it will explain it all. Good luck
    Anonymous 42789 Replies Flag this Response
  • Did you get the parathyroid test? Is your calcium level in your blood high?Sometimes border line results are still definitive of disease. A Sestimibi (sest-ta-mee-bee) nuclear scan will pinpoint if one of the 4 para-thyroids has gone bonkers and is sending out the message that you need more calcium in your blood-stream. Hence the kidney stones. Also bones hurt when calcium is leached from them. Good luck
    rad-skw 1605 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.