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confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 7/15/2009 10:58 AM (GMT -7)   
I was dx with fibro 15 yrs ago. Pain started in my low back, then hips, thighs, etc.... I have always tried to find something else, being sent  from dr to dr. Here is a list in order of progression.
low back
si joints/hips
inside and outside thigh (can follow with finger)
thoratic spine/neck
shoulders/elbows/wrists
heels/balls of feet
chest bone/ribs
fingers
severe fatigue/depression
 
 Bloodwork is all normalexcept HLA-B27 positive
 
Dx with plantar fasciitis/achillies tendnitis/costochondritis/soteoarthritis/reduced cervical lordosis/exagerated lumbar lordosis/ enthesitis/HLA type arthritis(spondylitis)/gangloid cysts on wrists....the list goes on and on.
 
The problem is it keeps changing, sometimes in addition and sometimes instead of. Peolpe think i'm crazy because if they ask I tell them a dx and then next visit it may change.
Mobic works on shoulders and elbows, plaquenil was giving me energy back but made me sick, lyrica worked ok but made me gain 30 lbs. Neurontin isn't doing anything, I am about to call and ask about savella.
I don't know what to do, I know my depression is worse and I need help. I was at my lowest yesterday, I can't deal with this much longer.
 
How much of this sounds like fibro?
 
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 7/15/2009 11:13 AM (GMT -7)   

Hi Okie...the pain you describe sounds exactly what I have and it moves around every day.  The hip and thigh pain never goes away and I too can follow a trail of the burning ache down the side of my leg.  I have had all the testing and the dx was fibro after tons of bloodwork, MRI's etc.  Honestly though, I have had such unpleasant reactions to all the typical drugs for this disease that I am sticking to Tylenol and Advil.  I do take Lexapro which has done nothing and I am trying to wean off of it.  I would rather suffer the pain than the dizziness, diarrhea, vomiting and headaches I get when I try a new med.  I know they lessen with time, but I am too impatient.  Plus I don't have prescription coverage and some of these drugs cost a fortune, only to find out they don't help.

I hope you find something that works.  Many on this forum have, and maybe they can give you some positive results.  Feel better...

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 7/15/2009 11:53 AM (GMT -7)   
Hi, Okie, and welcome!  You have come to a good place.  We do know what you are going through.  Yes, it does sound like fibro.  Most of us have had tests and bloodwork to rule out other illnesses first before the diagnosis of fibromyalgia is given, since it mimics symptoms of other illnesses.
 
Check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibromyalgia including a list of symptoms.  I be you will see yourself there.  There is a link to What Else Could It Be, too. 
 
Have you tried malic acid/magnesium supplements?  There is a link all about them in the Fibro 101 thread.  I use these and they have really helped me with pain and fatigue.  It seems that many with fibro are deficient in these nutrients.  They can also be deficient in vitamin D and that can cause pain and fatigue, too.  I'm having to take 3,500 IU of D3 a day to keep my levels barely in the normal range...and I live in Florida!  I get plenty of sunshine.  So, these are a few things you might want to talk to your doctor about.  It can't hurt and might help!
 
I'm so glad that you found us and joined in.  Our members love to help one another and we really do care about each other too.  So, keep posting and asking questions.  We are here to help you.
 
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


WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 7/15/2009 11:54 AM (GMT -7)   
Sounds a lot like mine too ...
The pain started with my ankles and progressed to my hips then shoulders over about a 2 year span of time. I also have the ribcage pain occasionally.

I tested negative for HLAB-27 ... my mom is positive for that and has Ankylosing Spondylitis as a result, which is no fun.

boo32
Regular Member


Date Joined Jun 2009
Total Posts : 222
   Posted 7/15/2009 12:31 PM (GMT -7)   
hi,
you've just described a lot of my symptoms and whet i really found interesting inyour post is how you feel when somebody asks about your dx and it keeps changing. I find this particular hard to deal with. I have bad depression at the mo and may be looking at another dx on top of fm as well.
I guess we have to learn to live with it and choose our words when talking about it to non fibromides.
At least here you can feel accepted and free to tell want you want.
take care.
boo
BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most! But it has its advantages!
Fibro, spinal arthritis and all that goes with it.
GAD


confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 7/15/2009 2:23 PM (GMT -7)   
Thanks for the replies. Boo32, you mentioned spinal artritis, what are they calling that. I think the deppression is just winning right now. Neurontin isn't doing anything other than interfering with the pain meds working. Dr won't chang it yet, says to wait till August and we may need to up the dose then. I had asked to try savella, I need something to work a little faster tha 3 months. I will have to quit my job if this stays this way. Then thats going to depress me more, as we can not afford that and I would lose my insurance.
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.

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