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Offline Ylide

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question about chronic muscle pain and fatigue
« on: 07/02/2005 12:05:37 »
This is more for Chris but anyone who's had experience with this please chime in:

My girlfriend, as some of you may know, has been plagued with various health problems throughout her life.  In the last 18 months she's been diagnosed with type I diabetes (her pancreas islet cells just up and croaked one week after a cortisone shot for joint pain) and thyroid cancer. (thyorid removed surgically along with 2 of her parathyroids)   Prior to that, she had a bout of idiopathic pulmonary hemocittorosis, essentially nonspecific hemmoraging of the lungs.  Prior to that, she had an ovarian cyst and a colon tumor the size of a softball removed...nice old-people diseases for a 24 year old girl.  

Anyway, she's had recurrant joint and muscle pain come and go since I've known her but the last two weeks it's been REALLY bad.  She can barely stand up for more than 10 minutes, is extremely weak and fatigued,  and is in excruciating pain most of the day.  Her doctor tested her for everything he could think of and nothing has come up positive except for a test that measures general non-cardiac inflammation, which was higher than normal.  She's been tested for almost every autoimmune disorder they can think of as it's common for hemocitorrosis survivors to develop them later in life but so far she's tested negative for lupus, rheumatoid arthritis and a couple other things I'm forgetting.  This is in conjunction with very uncontrolled blood glucose levels.  She's on well over 100 units of insulin a day along with metformin (glucophage) and still frequently experiences blood glucose levels in the 300-400 range.  These appear to have little relation to what she eats...she can eat a piece of cake and a bunch of other crap one day and not go above 150 then two days later eat nothing but whole grains and meat (and small quantities at that) and end up at almost 500.  I do not know if the two are related, but these are the main problems at the moment.  

What I'm wondering is what should be her next step in who she sees?  She has an endocrinologist who only sees her once every 90 days, won't address any problem other than diabetes,  and even forgets that she's  Type I diabetic when he DOES see her, so he's pretty much useless.  Her internist just prescribed her a huge bottle of Vicodin because he couldn't figure out why she's in pain.  Who should she see next?  What kind of specialist could focus on the chronic muscle pain / fatigue she's experiencing?  We're not really sure where else to start looking so hopefully someone in the medical field can offer some advice.

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Offline bezoar

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Re: question about chronic muscle pain and fatigue
« Reply #1 on: 13/02/2005 18:04:23 »
HMMM, I'd head for the endocrinologist (a new one) and the rheumatologist.  Seems that I remember that some of the auto immune diseases test negative unless you're in a flare up, and even then don't consistently test positive.  I'd wonder what her thyroid is doing cause if that doesn't function right, everything else can get screwed up.  When's the last time she had some thyroid function studies done?  Vicodin is only treating the symptoms.  Seems like you need to get to the bottom of the problem.
 

Offline Ylide

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Re: question about chronic muscle pain and fatigue
« Reply #2 on: 13/02/2005 21:39:37 »
Thanks for the input, Bez.  I didn't know that about autoimmune diseases, maybe her next doctor will know better.

Her thyroid was completely removed due to the cancer.  She's still a little bit hypothyroid as they're scaling her Synthroid up, but it's better than it was, her TSH levels are coming down quite a bit.  Overall thyroid hormone levels are getting close to normal as well.

I think we decided on a rheumatologist.  I did some more research and found that diabetes can cause muscle pain similar to fibromyalgia.  The main difference being that the pain foci are not on the same fibrous points used in diagnosing fibromyalgia but at certain nerve junctions.  Otherwise, the symptoms are exactly the same.  I'm thinking this is the problem.



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Offline bezoar

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Re: question about chronic muscle pain and fatigue
« Reply #3 on: 19/02/2005 06:03:14 »
Good luck to you both.  She's awfully young to have so many problems.  Must be very discouraging for her.  I hope they get to the bottom of it.
 

Offline Ylide

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Re: question about chronic muscle pain and fatigue
« Reply #4 on: 22/02/2005 11:43:29 »
quote:
Originally posted by bezoar

Good luck to you both.  She's awfully young to have so many problems.  Must be very discouraging for her.  I hope they get to the bottom of it.



Well, she has a week and a half before her rheumatologist appointment and today the pain was so bad she could barely sit up.  She needed two hands to pick up a glass of water.  [V]  She's also having significant nausea and occasional vomiting.  Hopefully she can hold out that long without gobbling down a whole bottle of pain killers.   It's not looking too good, keep your fingers crossed for her.  



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Offline Karen W.

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question about chronic muscle pain and fatigue
« Reply #5 on: 07/02/2009 02:21:51 »
Ylide, I was wondering if you are still around.. how things have gone with your girlfriend.. were they able to diagnose her problem? I know this is a very old post but hoping you are around still reading!
 

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question about chronic muscle pain and fatigue
« Reply #5 on: 07/02/2009 02:21:51 »

 

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