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Fibromyalgia? Please read!
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goolar posted:
I have TMJ, 24 female, I have chest pains, my heart rate is insane, underarm pain, lymp nodes on my neck.... leg, back pain, abdominal pain. I have been struggling for years and all test come back normal.

I just don't know what to do anymore, I get an itch I can't scratch its so very painful. Doctors can't figure out what is up with me.
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newgrandma1953 responded:
Hi,
I'm so sorry your going thru so much. The best suggestion I
can give is to go to Brigham and Womans Hospital in Mass. for another oppinion. I was diagnosed with Lupus 3 years ago. It was suggested I seek a second oppinion at B & W. Upon seeing 2 specialists at that facility, Lupus was ruled out and Fibro was identified as the cuprit.
It sounds like you may have more than 1 issue going on.
I know how frustrated you are, but your worth whatever it takes to get you diagnosed and under treatment.
My thoughts and prayers are with you.
Carol
 
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booch007 responded:
Good morning,

Though we are not supposed to recommend physician to see, I will tell you , you need to see more. It is the hardest part of this issue.

Until you meet the right doc and get the right diagnosis there will be no peace of mind. It took me quite a few years and hearing "sorry" alot. Tears came often, and then my champion physician came to me!

How about utilizing Dr P here up in the right corner, look into the threads of discussions under his name and read all he says. So much info there, then the toolbox under resources written by the fmily here a long time agao, to help a newbie figure themselves out.

By the time I saw the right physician I was well skilled in my toolbox, and when I joined here right after my diagnosis....I saw that amazingly we were all doing about the same stuff.

So, keep on truckin...don't give up. It is really the hardest part of this. Draggin our dragon eachday is tiring at best!

I wish you luck, it will get better. Nancy B
 
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thenikki64 responded:
I am so sorry you are having all these pains. I was tested for everything, too, with negative results and was even told it was all in my head, something I think we've all experienced. Struggle through, look at more docs in your area so you can hopefully find some relief or at least someone who is willing to try for you.

I read somewhere that chronic fatigue syndrome (one of my ailments in addition to FM and others) will cause enlarged and painful lymph nodes. My nodes under my jaw are the ones that bother me most, but it comes and goes.

Hang in there as best you can, educate yourself as much as you can, and never give up!
Pam in Savannah
 
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dollbug responded:
Hello and welcome....MiMi in NC...sorry that you are dealing with so much...I think that when a person first gets sick...this is when it is the hardest...and what makes it so much worse is doctors do not know what is wrong with us either....some doctors do not even believe that FM is an illness...I would call around and try to find a doctor who treats FM...and get yourself a second opinion.

There is nothing easy in trying to live with the wrath of the dragon, IF this is what is going on with you. The doctors must rule out other illnesses also..it is a vicious cycle..

I would like to encourage you to be sure and ask the doctor to check your Vitamin D level...which is so important for a lot of people these days...low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well..it is a simple blood test..but you MUST ASK the doctor to check it...as it is not included in the normal bloodwork that they doctors do...

Read up on FM...you can start right here...be sure and check out the info under "tips" and "resources" that you will find to the right of this page...the more you know...the better you will be able to cope...

You should also know that treating FM is not an easy issue for doctors either...as we are all different..and what helps one person may or may not help someone else...but I am sure you will find something that will help you cope better...

Hang in here with us...

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Anon_10089 replied to dollbug's response:
I immediately thought of Chronic Fatigue too. From what I've read about that, it can cause the lymph node problems and even the heart rate problems. Often FM and CFS go hand in hand.

Of course, other problems should be ruled out, so like everyone else has said, finding a good doctor is key.
 
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goolar replied to Anon_10089's response:
Thanks, to every single one of you. These years have been so awful. As I am reading every single one of you I am so thankful for strangers. I am having a lymphoma scare for quite a while.. I have a hematologist appointment in june. I have a feeling I will be wasting my time. again.

I have a new doctor now since my other one left the clinic/hospital. I'm just happy when I wake up with another day of life. I have been checked for lupus etc... so many test and I just end up curling up crying alone after every dissapointing "I'm sorry or I don't know, I can't help". and the worse "you're a mystery"

Thank you so so much for listening
 
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goolar replied to booch007's response:
Thank you I will take your work for it
 
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goolar replied to thenikki64's response:
It's been years an I won't give up now!
 
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goolar replied to dollbug's response:
Vitamin D is perfect thanks for your words
 
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goolar replied to goolar's response:
Started with chest/breast pain I have been to many, many doctors and specialist and nothing. Cardiologist, Neurologist, GI's, General doctors, ER's...the list goes on. I'm 24 years old, female and have become depressed lately.

I discovered my 1st lymph node in summer of 2010, my doctor at that time said it was a cyst (concluded that because of my severe acne) so I believed her. she sent me to do an mri of my neck.. normal.

months went by and it went away, then it came back out in april of 2011. ever since only on my neck, my new doctor (at that time in april) said it was a viral infection put me on valtrex, the nodes went away (so i thought) I had an upper GI, xray, ct scan done on my chest and nothing. I got very dehydrated that year multiple times as well as hospitalized. during that year my stomach began to hurt, so I was setn to do a colonoscopy and endoscopy...even an ultrasound. normal... hida scan; normal

til this day my stomach is in pain, my chest, my left underarm, my neck gets stiff when the lymph nodes come back, recently been in really bad headaches and neck aches. my back is worst.... my legs get itchy and are dry, i get random feelings of itchy skin all over. doctors say its just anxiety. they have leaned on that since my heart has been on a rate of 140 (three cardiologist checked me and said that my heart is healthy) doctors say it isnt lymphoma.though some in emergency have concerns they keep sending me back home. blood works come back normal too

i guess to relieve my worries they said many tmj patients get fibromyalgia... i dont know what to do or believe. i have been to so many doctors and i am so desperate i came here. i even went to los angeles for help ended back here in nyc...crying isnt an option since that wont help.

i feel breathless, fatigued. the nodes on my neck are there, steady... i dont know what to do. my doctor left her clinic left me a referral to see a hematologist in june 11...I was supposed to be seen in april but I got pushed back, twice.

I know have a new doctor people claim he is GREAT. wish me luck
 
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booch007 replied to goolar's response:
Goolar,

I hate to see anxiety put in there................Argh...

Can you purchase a book? It is a survival manual I speak of so much, it helped ME so much.

FM and Chronic Myofascial Pain: a survival Manual by; Dr Devin Starlanyl

It is like a workbook to look at the body see the symptoms you have and figure a fix. It is not perfect, it helps alot to see* the issues though. I paid 19.99 on Amazon. Everytime I had a need for an answer and what I could do about it was there, pretty much.

Try it. Education is a key at times. Also in there I think is her website and support group too.

Ask Dr P here about lymph nodes. We are close often to MCS (multiple chemical sensitivites) we change our immune system over time. Somethng you do may get the nodes going.....

I have to say that a light went on for me. I say my MOM I think had this, as she is passed we really can't talk about it all, but she had nodes on her neck up forever and told me they were blocked salavary glands. NOW that may be true...but so many similarities to what i deal with, my sis and I put together.

So, keep on asking, keep on looking to help tyourself and try that book I really liked it and use it. Nancy B


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