What is Wrong with Me?

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AKRain
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/31/2009 11:34 AM (GMT -7)   
For as long as I can remember I have experienced every day pain. I realized a few years ago that it isn't normal and started seeing doctors but they would not diagnose. I supsected Fibromayalgia because my mother has been diagnosed and I have some of the same symptoms she does, but mine are less severe. I have pain in my elbows and shooting pain in my arms and legs. Every few months I get pain in my thighs that feels like sandpaper rubbing on my skin and it slowly progresses to deep shooting muscle pain. Lasts for a week or so then goes away. Sometimes this happens on my arms but not as often. Doctors press on my joints and ask if it hurts. Well, no. Not to me. Maybe it would to you but I'm used to it. I don't know what normal is. It's random and I can't make it start or stop. It suprises me and nearly knocks me on my ass sometimes.
 
I was diagnosed with Epstein Barr and Raynauds Phenomenon in high school. Doctors ran all sorts of tests when my legs broke out in open infections but everything came back normal. I am only in my 20's and I can physically handle everything just fine, it's not to a point where I think I need treatment. However, it's frustrating not knowing what's going on. If I hurt because of Fibro or some other condition. If the pain I'm feeling now is harmless or something more serious. How do I determine that? I just try to take care of myself as best I can, excersizing and eating right. What else can I do?

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/31/2009 12:12 PM (GMT -7)   
Hello AKRain, Welcome to the forum, Sorry you are hurting.

You said your doctor did a lot of testing. I am assuming he ran extensive blood work
to help rule out any autoimmune diseases. Fibromyalgia mimics some of the connective
tissue diseases like lupus. It also has some of the same symptoms of lyme disease.

Blood work to rule out autoimmune diseases: ANA testing, Complete Blood Count,
Comprehensive Metabolic Pannel, these are just some of the tests they should be done
initially.

See if your doctor will give you a referral to see a rhuematologist, getting a diagnosis
can be slow and frustrating. Make sure you go to the doctors with a list of all your
symptoms and any questions you may have.

Wish you luck, Come back to ask questions, comment or vent
We Care

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


AKRain
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/31/2009 12:25 PM (GMT -7)   
My ANA count was high, all I was told other than that was everything was normal. I was referred to several different doctors, all ran tests and all came back the same. I saw several specialists who simply told me I was making it up. One was offended that I said she didn't understand when she prescribed me asthma medication. I did see a rhuematologist (the only one in my state of Alaska) and she was at a loss. She tried but said I didn't exhibit enough symptoms to be diagnosed with any illness. She couldn't rule anything out but couldn't diagnose either. Sigh.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/31/2009 1:47 PM (GMT -7)   
Be persistant, My ANA was negative and my rheumy ran an ELISA 8 antibody test.
I tested positive for RNP. this antibody shows up in Lupus and Scleroderma. I
later had a punch biopsy done on a dent in my forearm that shows I have a scleroderma
variant. My rheumy believes I have mixed conective tissue disease which is an overlap
of lupus and scleroderma and in my case RA. I take an immunosuppressant, Methotrexate
to help slow down disease activity.

Six years ago my old rheumy only did an ANA test, mine was negative so he never
ran the other antibody tests. He also chalked my fibromyalgia up to menopause.
There are people with sero- negative connective tissue diseases. Itis rare but it happens.

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


AKRain
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/31/2009 1:56 PM (GMT -7)   
Thanks! That is very helpful. I wish I would have done this years ago and gotten more info instead of blindly going from doctor to doctor.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/31/2009 2:24 PM (GMT -7)   
It was only after going from doctor to doctor that I started doing my own research on
the internet. I found the fibro and lupus forums here and started reading. I have been
reading posts for over a year before I actually became a member. Now when I visit
my rheumy I always have questions for him.
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 8/31/2009 11:44 PM (GMT -7)   
Hi AKRain, I'm in AK as well! Welcome. I was diagnosed earlier this year but am thinking I have had fibro for a long time. There are actually two rheumatologists in Alaska; yours (the female) is in private practice and mine (the male) is traveling constantly to rural Alaska to provide mobile internal medicine clinic. They are both incredibly hardworking and cover the WHOLE state's rheumatology needs.

Lyme and Lyme-like illnesses aren't common here in AK (no deer ticks or carriers) but you can get it if you travel out of state. At my hospital, we run the same bloodwork every couple months, so we can see consistency over time, or things are rapidly progressing. I get tested for everything, vitamin levels checked, thryoid, you name it. These tests are valuable because they are measurable, trackable data. The way I see it is, as more and more becomes known about FMS, tied to the data in my chart, all the tests would establish a timeline and a benchmark of my pain. Keep exercising and eating well. I am finding that this, plus enough sleep and meds, is the best way for me to balance work and life with pain. I am dreading the coming winter though, because I felt such intense pain last year when we had those 3 weeks of -40F in January!! And definitely be persistent. I have a good relationship with my primary care doctor, and between him and the rheumatologist, we decided that my primary care doc would be the main provider, in consultation with the rheumatologist. If you are thinking of a new approach, maybe seeking a new primary doc for a second opinion might be a solution for you? In any case, welcome - it's great to have one more Alaskan here! (I think there is another out there in the Healing Well ether too!)

AKRain
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 9/1/2009 9:16 AM (GMT -7)   
Thank you for the welcome and advice! I only ever talk to my mom about this stuff and I'm amazed at how good it feels to talk to others as well. My mom was diagnosed when Fibro was newly discovered, must have been over 10 years ago now. I was talking to my husband last night, I feel like I need to make him understand but he simply said "Just because you can't explain it and I can't see it doesn't mean it's not there". Almost made me cry I'm not used to people believing me. Doctors didn't even believe me. Now all the wonderful people on this forum are so supportive and it's a little overwhelming to be honest.

I didn't know there were two rheumatologists here, I haven't seen mine in a couple years. I was told our only one died in a plane crash and then the female doctor came to town. When I am ready to try the doctor thing again, I will definately take you advice and find another primary care doctor.
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