What did your doc say? How were you dx'd?

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songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 8/5/2008 2:33 PM (GMT -7)   
Hi, I have Crohn's so Im familiar with Healingwell from that forum.
 
I have alot of issues going on right now though...and well used one of those internet dx'ng tools and it said Fibro....just curious what ya'll think...here's my symptoms
 
anxiety-shortfuse-impatient-irritable
tired/fatigue
migraines
overactive bladder (have to go either right away or feel like I have to go when I dont)
menstrual cycle is HORRIBLE...painful etc
pulled muscles it feels like or stiffness when Ive been in one position too long
tenderness/soreness of my skin---I feel it worst in my shins, buttocks...its strange!
insomnia
jaw pain
joint pain
numbness in arms/hands
vision problems
 
 
now...my question is..how do you go to your doc and tell her all these symptoms without her thinking you are LOONEY TUNES or a hypochondriac...when I already have Crohns and have all those issues related to it
 
so spill ...what did your doc say?
 

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Past meds: Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Pred, Asacol, Prevacid, and the list goes on. Currently on Humira every 2wks,  Pentasa, Tapering Prednisone now.


kellieak
Regular Member


Date Joined May 2008
Total Posts : 68
   Posted 8/5/2008 2:45 PM (GMT -7)   
I got the run around from regular docs. I didn't know what was wrong with me at the time, and so when the doctors said it must be in my head, I guess I probably believed them for a while. I was having tmj problems, knee problems, shoulder, rls, but I would only go see my doctor when things were really bad, and then only mentioned the one problem that was flaring at that particular moment, I had no idea all my symptoms were related.

eventually I started using google, typing in my symptoms, and they all went right to fibromyalgia. some of the symptoms I have had my whole life, so I was amazed to find out about fibro, and how all those things wrong with me were also wrong with other people too. then the day after my discovery online, my boss came to me. her best friend had fibro, and they were talking about all my symptoms, and her friend said it sounded like fibro. hearing it from them convinced me to make an appointment with the friends rheumy. which I did. it was like serendipity though, the way I figured it out and my boss figured it out within 24 hours of each other.

the rheumy did some tests to rule out anything else, and pretty much agreed with my dx. once all the tests came back as being negative for anything else, he made it official. I had been suffering with the symptoms for years by the time I got diagnosed. you will hear that a lot around here, most of us went undiagnosed for years. were told it was all in our heads.

Post Edited (kellieak) : 8/5/2008 3:51:08 PM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/5/2008 3:46 PM (GMT -7)   
Hi, Songstress, and welcome!  I, too, have Crohn's and fibromyalgia.  Check out the Fibro 101 thread.  It's the second thread on the first page of this forum.  There are links to some good info about fibromyalgia.  One of the links is a list of fibro symptoms.  You could print this out and check all that pertain to you.
 
Also, you could see a rheumatologist for the fibro diagnosis.  They are the doctors that many use for this.  My board certified internist handles my fibro, though. 
 
I'm so glad you joined us and I hope to hear more from you.  Let us know how the doctor's appointment goes.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40588
   Posted 8/5/2008 4:12 PM (GMT -7)   
My doctor did various test and couldn't find what was wrong. Eventually she did tenderpoint tests and I about jumped off of the table when she hit a spot on my back. She told me what I had and that it was very painful and that there was no cure for it. I had her write it down on a piece of paper for me. She also wrote down that it was a short circuit in the nervous system. I still have that piece of paper.

hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/5/2008 5:34 PM (GMT -7)   

I had one doc tell me straight off that there is no such thing as fibromyalgia, I left in tears.  My current doc wont even use the term he says we will just call it nerve pain.  One part of him trusts me and he wants to beleive, the other  thinks im exagerating Whenever i go to doc I get very sick and syptoms worsen because each time its like having to prove it,  how can you prove it....I finally have a rhuematologist who does beleive which helps and im going to tell my doc of this site, so he knows its not just me.

my symptoms- intense burning in neck, skin sensativity to clothing, sheets ect. muscle spasms.


Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Kythe
Regular Member


Date Joined Jun 2008
Total Posts : 261
   Posted 8/5/2008 6:45 PM (GMT -7)   
Well it was a long road to me getting diagnosed. Many of my problems that are associated with with fibromyalgia I've had most of my life such as chronic fatigue, depression, anxiety, ibs, strange fevers, and environmental sensitivities.

Now around the beginning of this year I started having dizzy spells when being on my feet for awhile. I went to see my primary doctor who briefly examined me and I had to get a lot of blood work done. Everything came back normal on the blood work except that my liver levels were slightly elevated. So then she ordered more blood work specifically for the liver and it didn't show any liver disease. So she decided to monitor my liver levels every so often and after several blood tests came back showing that my liver levels were still elevated, she told me I had to get an ultrasound of my liver done. The ultrasound showed that my liver was slightly enlarged and there were fatty deposits in it.

So then she told me that I had to go see a GI specialist. Now during the months between when I first saw my primary doctor and when she decided that I should go see the specialist, I had started to feel achy all the time and I would get severe pain in random places that would last anywhere from 10 minutes to a few days. The GI specialist was very through and wanted to know about all of my symptoms even if they weren't related to digestive issues so I told him about all the pain I was in. He had me get a lot of blood work done and in addition to more liver tests, he also tested for various diseases. When those results came back he said that there were inflammatory markers in my blood that could indicate lupus and said I needed to see a rhematologist.

It was a very long wait to see the rhematologist, so while I was waiting, I did a lot of research about my symptoms. My research lead me to believe that my symptoms fit fibromyalgia more than lupus. When I finally got in to see the rhematologist on July 18th, he said that he agreed with me that I have fibromyalgia. He said that he still had to test for lupus though because it's possible I could have that as well. I'm still waiting for the results on that though. Incidentally he said that my liver levels weren't high enough to account for the dizziness and whatever is going on with my liver is an unrelated problem.

What I really wonder though is, did my fibromyalgia start when I started experiencing the dizziness and pain this year, or did it actually start when I began experiencing all of those other problems that I mentioned in the beginning of the post?
~Kythe
____________
 
Allergies, Asthma, Anxiety, Depression, IBS, PCOS, Fibromyalgia


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 8/5/2008 6:54 PM (GMT -7)   
oh wow Kythe...Ive had some of those same things!! I had my liver levels go up and down and docs push it off because my gallbladder was fine

Ive had bloodwork show my inflammation coming back high like in the high 50's I believe for this one test..when it should be down in the 20's

back then they put me on some arthritis meds but Im not allowed to take NSAIDS anymore due to the Crohns worsening and spreading and Tylenol does nothing

Ive also felt the discouragement you have felt when going to a doc and explaining ALL THESE SYMPTOMS, and leaving upset/crying like I had to PROVE I was in pain...takes a toll emotionally

Im really hoping my appt next Thursday with my PCP will go better

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Past meds: Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Pred, Asacol, Prevacid, and the list goes on. Currently on Humira every 2wks,  Pentasa, Tapering Prednisone now.


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/5/2008 8:49 PM (GMT -7)   
I think that depression, anxiety are like incubators for fibro, they are the start.  Its good to know others have probs with doctors,it takes such a long time to gt diagnosed.

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


chuzzle
Regular Member


Date Joined Jul 2007
Total Posts : 269
   Posted 8/6/2008 5:41 AM (GMT -7)   
Kythe,
It's interesting you mentioned liver levels...because mine are elevated at times and other times not. The Dr just blew it off. I've always wondered if it had something to do with fibro.
Hey, friends find a doctor that makes you feel good. This stuff is REAL. We have enough to deal with without some small mind making things worse. Just my opinion.
"For God, who commanded the light to shine out of darkness, hath shined in our hearts, to give the light of the knowledge of the glory of God in the face of Jesus Christ." 2 Corinthians 4:6
 
A woman is like a tea bag- you never know how strong she is until she gets in hot water.
Eleanor Roosevelt


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 8/6/2008 6:52 AM (GMT -7)   

Hi Songstress! Several years back I was forced to switch doctors because of a total change in our company's health insurance carrier.....from Blue Cross to United. I had reached dead ends with all of the previous doctors.....in fact I had never even heard of the terms fibromyalgia or chronic fatigue syndrome until after that switch. The other ones ran many tests which showed only hypothyroidism, hypertension and minor depression and I started taking meds for them and got them under control. I still felt little or no change in symptoms so they ran even more tests which produced only normal results.

Then, the insurance switch occurred and I found a younger doctor, an internal medicine specialist who was on the PCP list, who actually talked with and listened intently to me.....the best "bedside manner" I had ever seen in a doctor. He suggested several tests that I had never had before and discovered a testosterone deficiency, high cholesterol, heart arrythmia and a positive ANA count.....an indicator of an autoimmune disorder. So, I started meds for the cholesterol & arrythmia and testosterone injections every two weeks. He ran further tests on the positive ANA to rule out lupus, rheumatoid arthritis and other possible autoimmune diseases. Those were all ruled out so HE is the first one who mentioned fibromyalgia and chronic fatigue syndrome and suggested seeing a rheumatologist (even gave me a couple names) for more specialized testing but went ahead and listed fibromyalgia as my dx and began treating the symptoms. I didn't take his advice on the rheumy until June of this year when the symptoms finally became so bad I could no longer keep them under some kind of control and "just live with them".

After googling rheumys in my city, I centered only on those who specialized in fibro or cfs. So, I selected my current rheumy (one of those he suggested who actually specializes in fibromyalgia, chronic fatigue syndrome and autoimmune disorders) and after she ran much more specialized tests to rule out other possibilities, dx'd me with fibro, cfs and cebv (chronic epstein-barr virus) and started me on a therapy she researched and devised - glutathione/atp injections. Except for one minor flare, I feel the best that I've felt in years and am continuing on the injection regimen with testing every 6-7 weeks to check for any changes/improvements in anyl of the test "numbers". That's where I am at the moment and consider myself extremely fortunate to have found her!

Gentlest of hugs,

John


*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!


Kythe
Regular Member


Date Joined Jun 2008
Total Posts : 261
   Posted 8/6/2008 7:05 AM (GMT -7)   
Very interesting, I didn't think that the liver stuff actually had anything to do with the fibro and that it was just a separate problem that happened to help lead to the fibro diagnosis. But now two of you have mentioned the same problem and it really makes me wonder how it's connected.
~Kythe
____________
 
Allergies, Asthma, Anxiety, Depression, IBS, PCOS, Fibromyalgia


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 8/6/2008 7:42 AM (GMT -7)   
Hi Songstress and welcome to our family. I just lost my post to you cause I wasn't logged in so just want to welcome you for now.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 8/6/2008 5:32 PM (GMT -7)   
thx jev....I think the younger docs are more up to date on some of these diseases..is my take on it

your story just gives me hope to always keep looking if you don't get a doc that understands!

ps: thx Marlee for the welcome!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Past meds: Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Pred, Asacol, Prevacid, and the list goes on. Currently on Humira every 2wks,  Pentasa, Tapering Prednisone now.

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