Discussions By Condition: I cannot get a diagnosis.

More than Fibromyalgia...

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Anonymous
  • February 1, 2007
  • 10:54 AM

I have been diagnosed with Fibromyalgia but my symptoms have gotten worse and everything I have read about Fibro, your symptoms do not increase they just come and go. I have done a lot of research and my symptoms to ME seem to fit Lupus more but my Dr's don't seem to listen to me just because of a blood test. How do I get them to listen? Everything I read states that a lot of lupus patients do not test positive on the ANA blood tests. Here is a list of my symptoms to date, not all at once, not all I think are part of this:

Heat sensitivity
Pain in joints
numbness in legs and feet
Seizures (or episodes)
What seems like kidney swelling to me (pain below right shoulder blade had gallbladder removed)
pain under ribs in front on right
IBS
pinpoint size red dots on arms and legs
scaly red spots on arms and legs
swollen glands
(i had some lymph nodes removed and a salivary gland removed because they were damaged and that could not be explained) glands have been painfully swollen for over 2 years now
extreme fatigue
hair loss
sensitive to sun (get red rash immediately)
headaches
stomach aches
dizziness
fevers
chest pain
being treated for depression
swelling in hands and feet and ankles
weight gain (some sites say loss some say gain and loss)
iron deficiency anemia

In the past month I have felt very sick, especially the pain below my right shoulder blade. I have to keep a heating pad on it when I sit up or I can't sit up at all it hurts so bad. I don't have insurance at the moment, but if I need to be seen then I will take the financial hit and go...

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11 Replies:

  • I also forgot... right now I also have a weird breakout on my face (not acne) and a painful lump under my left armpit. The breakout on my face are red painful lumps as well.
    Anonymous 42789 Replies
    • February 1, 2007
    • 10:58 AM
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  • I have the majority of your symtoms and have not received a diagnosis, so you are not alone! It is bizarre. I have a friend who has alot of the symptoms too. Try cleansing your body of toxins. It may be a food allergy or food intolerance. There are so many chemicals in food now. I feel better drinking alot of water. Def. get that painful lump checked out, no matter the cost in case it is not related. Also check your hormone levels (estrogen, DHEA, FSH, etc). Good luck and please keep posting.
    Anonymous 42789 Replies
    • February 1, 2007
    • 10:38 PM
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  • PS I have the red spots on face too which was diagnosed as rosacea. Yours sounds familiar esp with the sensitivity to the sun. I think it is all related though - some kind of autoimmune problem. Our bodies are trying to get rid of crap is all I can think of.
    Anonymous 42789 Replies
    • February 1, 2007
    • 10:40 PM
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  • Isn't Lupus an Autoimmune disorder? I have cleansed my body of toxins, had allergy tests, etc. I quit smoking, I don't drink. I drink water and not soda or coffee. I had a hysterectomy at age 26 so I do not really have any hormone issues other than there aren't any to speak of. This has been going on for over 2 years.
    Anonymous 42789 Replies
    • February 2, 2007
    • 00:41 AM
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  • Do you also have muslce pain or fatigue? When you exercise do you feel overly fatigued and exhausted? If you answer yes to these you might want to chk out the MDA site... look under mitochondrial disorders or neuromuscular disorders... they might call it myopathy? Hope this helps!
    Anonymous 42789 Replies
    • February 2, 2007
    • 08:43 PM
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  • Isn't Lupus an Autoimmune disorder? I have cleansed my body of toxins, had allergy tests, etc. I quit smoking, I don't drink. I drink water and not soda or coffee. I had a hysterectomy at age 26 so I do not really have any hormone issues other than there aren't any to speak of. This has been going on for over 2 years.I think it's becoz you don't have any hormones at all...you need some - just make sure they're natural and not pharmaceutical HRT...best to go to anti-aging clinic or naturopath, etc.
    Anonymous 42789 Replies
    • February 2, 2007
    • 10:22 PM
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  • Have you been tested for Lyme disease and low thyroid??? If so and tests were neg, get retested and ask for more sensitive tests. I ws dx'd 6 yrs ago with Fibro, thats now a 20 yr old case of undx'd lyme. They now have tied MS, CFS, Fibro and more to undx'd Lyme. Please don't wait.
    Anonymous 42789 Replies
    • February 2, 2007
    • 10:49 PM
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  • For lupus, did they check your compliment blood levels, C3, C4? Also they can do more specific tests like Anti DNA, etc. I have been going through some crazy symptoms myself, I know how you feel. I hope you can get a diagnosis.
    erobbins 5 Replies
    • February 12, 2007
    • 03:15 AM
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  • 'Do you also have muslce pain or fatigue? When you exercise do you feel overly fatigued and exhausted? If you answer yes to these you might want to chk out the MDA site... look under mitochondrial disorders or neuromuscular disorders... they might call it myopathy? Hope this helps!'I do have a lot of muscle pain and fatigue. I have been getting steroid injections for about the last 8 months which help for a few weeks but that's about it. I was taking methadone for chronic pain and hydrocodone break through pain but the methadone made the heat insensitivity worse. (really bad sweating) I go back to the pain doc tomorrow. Now have some weird rash on forearms which is clear, little pimple like things with the petechia.I will have them check on the Lupus, Lyme, Thyroid. My regular Dr. is pretty thorough but if I ask she is normally pretty good at running them. Thanks for the advice!
    Anonymous 42789 Replies
    • February 12, 2007
    • 00:42 PM
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  • steriod injections can cause your pituitary-adrenal axis to fail. It happened to be after only 3 steriod injections. I developed secondary adrenal insufficiency (Addison's disease.) Check out http://www.mayoclinic.com/health/addisons-disease/DS00361/DSECTION=2 and http://endocrine.niddk.nih.gov/pubs/addison/addison.htm Ask your doctor for a blood cortisol test and a 24 hour urine collection test.
    oklahomagal 14 Replies
    • February 12, 2007
    • 03:28 PM
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  • If you have Lyme, steriods can make you much worse. Don't let a negative lyme test fool you or your doctor - they are terribly unreliable. Your symptoms look like a page from the Lyme textbook! Check out the list at canlyme.com. Post your question and there are lots of people who will help or offer suggestions of other diseases to rule out.
    Anonymous 42789 Replies
    • February 14, 2007
    • 03:25 AM
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