Fibromyalgia Community
Last resort please help =(
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Last resort please help =(

My mother has been getting constant pains moving around her body within the abdomen, the chest and heart, arms, legs, back, base of neck, head, hand, fingers, wrist and now just recently it has began spreading into her eyes. She cannot sleep at night because of the constant pain. Everyday is getting worse and we've run out of options. Dont tell me to go talk to my doctor cause we are there every other week and he tells us the same thing, "Fibromyalgia".  I thought that Fibromyalgia was something that affected the joints but this has to be something more. Please. The pain is spreading into her nerves and causing an increase in blood pressure...is Fibromyalgia really supposed to do all of this?! God I need help! Please if anyone has come in contact with similar symptoms or knows any other illness that could be contributing...please contact me
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There're lots dumb, arrogang, and ignorant doctors out there.  If your gut feeling tells you that is something more to FM with mom, there ususally is.   .

Like many here, I have both ME/CFS and FMS....my pain does travel.  If I'm not mistaken, fibro pain does involve muscle, tendons, nerves everywhere in one's body, not just joints.  Im going to find that Fibromyalgia Asso.of Amer. site for you..and pm you later.  Meanwhile, try to stay calm.  Take care of yourself.

Thoughts and prayers are with your mom that she is having a more comfortable day today.

Kit

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Avatar_m_tn
Thank you so much Kit.Lately I feel that I need to take matters and research into my own hands. Thank you for the blessings and I am praying for you aswell. Hope you day was comfortable aswell.

- Nate
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Avatar_f_tn
Hi, and welcome.  I just wanted to give you a big pat on the back and cyber hugs.  You are a wonderful son to be trying to help your mother.  It is hard to go from Dr. to Dr. and they will not "hear you".  I can't imagine what it is like watching this happen to your mother.

I know what it is like to know something else is going on.  It's like once you are diagnosed with fibro than nothing else can possilbly happen to you.  Dr.'s see the diagnosis and write everything off to it.  For some reason they take the "see horses not zebras" thing they learned in school way too far.  

There are a lot of autoimmune diseases that people have that they do not test positive for on the "normal" tests.  (ie: test negative for the antibodies for Sjogren's Syndrome, but if dr. decides to go further and actually test positive for it when a lip biopsy is done.)

Have you ever watched Mystery Diagnoses?  It is one Discovery Health here.  It kind of shows you that the horses/zebra theme is common.  I learned of a disease that my dad has.  He has had it since the 60's and doctor's couldn't tell him what it was.  Luckily, it wasn't something that gets worse.  

For me, I was diagnosed with rheumatiod arthritis even though I tested negative for Rheumatoid factor.  I finally got "lucky"  and a rheumatologist (the 3rd I went to) ran a test for cyclic citrullinated peptide.  It was highly positive and I was given the diagnosis.  Now, maybe with treatment, the disease process can be kicked so it won't get to bad.  I'm not sure that is the only/correct diagnosis, but at least it's a start for someone to see that it's not just fibro/cfs.

So, what I am saying is... keep doing the research, and know that you will probably have to change doctors. (maybe a couple of times)  Make sure you go with your mom to the doctors.  Having an advocate will help the process.  And don't give up!  I know it's a rollercoaster trying to get help.  Get copies of all the blood work, x-rays, scans, etc.  Also, get copies of the office visit dictations.  You will learn a lot.  (I got a copy of the notes from a neurologist I went to that had half of a page of an exam she done that was normal when she never even examined me.  at the least, it lets you know not to go back to that dr. and waste your time and money.)

Sorry so long winded.  I just wanted to give you cyber support and let you know that you are not alone.

Hang in there and goodluck!
Karen







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Avatar_f_tn
Lyme disease can cause those symptoms.
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Avatar_m_tn
Thank you so much...and no worries on the length the more research and suggestions the better lol

@patsy10 Thank you, we did look into it but it turned out to be negative.
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Fibromyalgia is supposed to be wide spread pain primarily in the muscles and tendons.  It can be interprted as joint pain, but not always.  There are 18 pressure points and 11 out of the 18 are needed for a dx.  Was an exam done on your mom that involved pressure points being pressed on?  

Click on "Health Topics" and then on fibromyalgia.  It give you an overview of that illness.  Your mom could have fibro and something else.  But at a glance, it does look like that might be the culprit.  And the best treatmnt for that is getting proper sleep.  I take a benadryll and a melatonin to help me sleep.  Some people need something stronger, but that is all my body can tolerate.  

Hope this helps.
Praying for your mom,
~Kara
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