Discussions By Condition: I cannot get a diagnosis.

20-year-old Chronic Pain & Fatigue HELP ME

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: sarahex
  • January 27, 2009
  • 07:31 PM

I've been chronically ill with varying degrees of fatigue since I was 12 without any type of diagnosis from multiple MDs. My symptoms have been back with a vengeance for the past 8 weeks getting progressively worse.

If it's significant, things took a turn for the worst a few years ago when I had a massive, systemic strep infection leading to itching, all of my skin peeling off, and rheumatic fever.

History
Depression, Anxiety, ADD, & Obesity (all being treated/addressed)
Symptoms
Severe Fatigue
Moderate Generalized Pain
Severe Generalized Itching
Inability to Perform Activities of Daily Living
Not currently suffering from depression
Sore Throat (tonsils removed +2 years ago)
Constantly Running Nose (+10 years)

Current Labs
CRP - severely elevated
Sed Rate - severely elevated
WBC - slightly elevated
Mono - Negative
ANA - Negative
Rheumatoid Factor - Negative
Cortisol - normal
Thyroid Function - normal

Not suffering from Strep, Rhino virus, or Influenza

If anyone have any ideas, please, PLEASE, I'm desperate for any idea. My Dr. diagnosed me with fibromyalgia because she couldn't make sense of my labs and symptoms and is sending me to an Infectious Disease Specialist. I've seen two rheumatologists, two primary care MDs, an ENT specialist, and no one can figure out whats wrong. HELP

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18 Replies:

  • you don't mention your cholesterol levels, a triglyceride level, or a serum glucose level. are you currently overweight? do some looking into metabolic syndrome aka syndrome x.
    paramedchick04 1 Replies
    • January 28, 2009
    • 08:09 AM
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  • I AM obese, normal serum glucose levels, slightly elevated Triglyceride Levels, normal cholesterol (on the high end of normal) I'll look up my labs for a specific number and range. Thank You.
    sarahex 10 Replies
    • January 28, 2009
    • 00:20 PM
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  • I can explain all your symptoms based upon your obesity,ADD,and anxiety except for the runny nose and sore throat,which are probably due to allergies and a postnasal drip(Do you have this?),which is a common cause of sore throat.
    richard wayne2b 1232 Replies
    • January 28, 2009
    • 01:50 PM
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  • Hi,I have dealt with a lot of ME/CFS/Fibro cases. The ESR and CRP (and white cells) are not usually raised. If the latter was fairly recent and coincided with the commencement of the muscle pain then consider polymyalgia rheumatica which needs steroid treatment in which case you should discuss this with your doctor.
    Anonymous 42789 Replies
    • January 28, 2009
    • 03:40 PM
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  • No post-nasal drip, I've used every single antihistemine known to known to man and nothing helps the runny nose. No known allergies. As for the obesity, after losing fifty pounds and when I was thinner, symptoms were just as bad, if not worse after losing weight. The anxiety only developed in the last 2 years after finally managing my depression, and the ADD was just diagnosed in August of 2008. My GP of 18 years told me the same thing about the obesity - if you lose weight all of your symptoms and problems will go away. Your'e doctor saying "your'e sick because your fat," isnt the best way to diagnose a physically miserable, depressed teenager (in my opinion.) I know losing weight will help; I've been obsessing and dieting since I was 5 years old. What's wrong with my isn't 100% obesity, that's why I'm so incredibly frustrated.:(
    sarahex 10 Replies
    • January 28, 2009
    • 06:43 PM
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  • Hi, I have dealt with a lot of ME/CFS/Fibro cases. The ESR and CRP (and white cells) are not usually raised. If the latter was fairly recent and coincided with the commencement of the muscle pain then consider polymyalgia rheumatica which needs steroid treatment in which case you should discuss this with your doctor. "Polymyalgia rheumatica symptoms may include: Moderate to severe aching and stiffness in the muscles in your hips, thighs, shoulders, upper arms and neck Fatigue Unintentional weight loss Weakness or a general feeling of being unwell Sometimes, a slight fever Anemia — low red blood cell count" Besides the weight loss, I have all of these; chronic low-grade fever, chronic anemia (very mild) and the locational pain. Is there a diagnostic test for polymyalgia rheumatica? :confused:Sarah PS Thank you all for the input and suggestions:)
    sarahex 10 Replies
    • January 28, 2009
    • 11:11 PM
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  • I'm not sure why the sed rate and CRP are increased,but polymyalgia rheumatica is usually seen in people over 50. the average age is 70.
    richard wayne2b 1232 Replies
    • January 28, 2009
    • 11:47 PM
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  • Polymyositis might be more likely.
    richard wayne2b 1232 Replies
    • January 28, 2009
    • 11:49 PM
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  • I'm aware - is it only diagnosed in those 50 and over? Or is something usually diagnosed +50?
    sarahex 10 Replies
    • January 29, 2009
    • 00:12 AM
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  • On Polymyositis - wouldn't creatine kinase (CK) and aldolase be tested for in a Complete Blood Panel? No problems with swallowing, just painful, and more pain than weakness. Plus, I've seen two rheumatologists and a neurologist (for an unrelated condition,) wouldn't they have picked up on polymyositis in their bloodwork?
    sarahex 10 Replies
    • January 29, 2009
    • 00:25 AM
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  • IT's almost always in a patient at least 50,but that's not the same as exclusively,is it?Anyway,it was a great idea on your part.How did you even know about it?
    richard wayne2b 1232 Replies
    • January 29, 2009
    • 00:40 AM
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  • Hi, I have dealt with a lot of ME/CFS/Fibro cases. The ESR and CRP (and white cells) are not usually raised. If the latter was fairly recent and coincided with the commencement of the muscle pain then consider polymyalgia rheumatica which needs steroid treatment in which case you should discuss this with your doctor. Halle suggested the polymyalgia rheumatica - I've never even heard of it before today.
    sarahex 10 Replies
    • January 29, 2009
    • 00:47 AM
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  • How did Halle know about it?
    richard wayne2b 1232 Replies
    • January 29, 2009
    • 00:57 AM
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  • No idea. :confused:
    sarahex 10 Replies
    • January 29, 2009
    • 01:07 AM
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  • Halle suggested the polymyalgia rheumatica - I've never even heard of it before today. I'm seeing my primary on Friday - I'm going to ask her about polymyalgia rheumatica just to gauge her response. Maybe ask about a cranial artery biopsy to rule out giant cell arteritis (migrains + SED & CRP off the charts) Thoughts?
    sarahex 10 Replies
    • January 29, 2009
    • 03:33 AM
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  • What's the best way to go about asking my Doctor that I suspect polymyalgia rheumatica without bruising her ego, think I'm self diagnosing, and drug seeking?:confused:
    sarahex 10 Replies
    • January 30, 2009
    • 03:08 AM
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  • Tell her the truth:that you got the idea from this forum.
    richard wayne2b 1232 Replies
    • January 30, 2009
    • 01:08 PM
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  • Saw the doctor today for a follow up on my lyrica. She didn't feel I have polymyalgia rhematica based on the fact that my SED rates have been running in the forties and fifties, and all the patients she's seen were well over 100 on there SEDs. All I got was suggestions to eat less refine foods and to exercize for the pain and fatigue. No upping the Lyrica (starting dose is 50mg x 2) where the theraputic range is 400mg x 2 a day. She save me Prilosec because I've been taring my stomach to shreds with the amount of NSAIDs I'v been taking, eventhough I'll still in complete agony. No muscle relaxers, no pain meds, and I'm sick of living like this. It takes me 15 minutes in the morning to stand up straight because my back hurts so bad. The same for sitting in 2 hour classes. Frustrated - I guess I'll just start eating raw food for awhile and exercize daily. I should be doing that anyway...:(
    sarahex 10 Replies
    • January 31, 2009
    • 07:31 AM
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