Fibromyalgia Community
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Avatar universal

new fibro dx

hi everyone. this is my first time here. the past year i have been thru a multitude of xrays, ct scans, labs, etc. problems first started when i lost weight (was down to 94 lbs, normally 110 or so) and had large lumps in my neck. found out my blood calcium was too high, so got checked for parathyroid tumor but level was not high enough. got sent to head and neck surgeon who did ultrasound on enlarged lymph nodes, but those seemed okay. got sent to a rheumatologist who says i have a positive ANA, high urine protein but she thinks its fibro more likely than lupus.

i guess my question is how do you explain to your family members that this is all real? my significant other does not understand. he thinks i am lazy. i am so tired, my joints hurt, my bones hurt, my muscles hurt, i feel like i am 89 years old. (i am 28.)

thanks for your help
3 Responses
Avatar universal
I've quit trying to explain my fibromyalgia condition to my kids.  When I started to get less and less active, one child told me I was lazy and faking.  
He has grown up and has become an RN like me and still doesn't spend time with me.  He keeps asking me out to dinner and I have to tell him the same answer.  I have to be having a good day to go anywhere.  Just a normal invitation doesn't work with my discomforts going on.  I ask him to visit, but he won't spend time with me more than 5-10 minutes with me. Has broken my heart. We keep in touch by phone and email.  He does help me immediately if I have an emergency and has helped giving me some supplies.  We do tell each other how much we love each other.Still hurts, but I am coping lots better over time by being busy enjoying my indoor activities and my wonderful helper twice a week.
1530171 tn?1448129593
Hey marypat15.
Welcome to the forum.

Do you know the exact results from the hyperparathyroidism testing?
Your calcium levels and your parathyroid hormone  (PTH) levels are of
of significance and consistent with your symptoms if the calcium remains elevated, yet the PTH stays in the higher ranges but below 65pg/ml (below 65 is a non-classical parathyroidism level & above 65 is a classical hyperparathoidism level).

A high protein level in the urine is called Proteinuria and it could be a serious issue. Possibilities include impaired kidney function (more likely) -which would also explain the high calcium levels in the blood-
HBP and heart issues (less likely).
I'm surprised the Rheumie didn't pursue this further!
You should really look into this.

Do not concern yourself so much with how family members respond.
You need real answers more than their sympathy and understanding!
It's tough, however, you need to stay focused, to get better.
Trust me I've been there. You don't "look" sick, you don't have a clear cut dx of a "mainstream" type of disease like breast cancer or AIDS-God forbid-
your own doctors may even look down on you, as if they could be doing something else instead of "babysitting you" and probably wanting to say at times "just suck it up" whatever it is that is bothering you.

Your Rheumie, instead of thinking it's fibro, should follow the diagnostic criteria for FMS, and verify this.
She may suspect that you won't meet the criteria 100%,
so a suspected fms determination, gives her a way out in case she's wrong. Doctors are like this.
This is all hypothetical as I'm going just by the information in your post.

Post again should you have any questions or just to comment.
You may message me any time.
Just remember, there's only one person you can really count on,
and that person is YOU!   And of course GOD!
Wish you well.
Avatar universal
Hello there. Sorry to meet under these circumstances. I was diagnosed with Sjogren's syndrome about 8 months ago and my family physician referred me to a rheumatologist for the joint pain. I was diagnosed with fibromyalgia and sarcoidosis as well. I really do understand and feel compassion for you when trying to convince friends and family members of the severity of the pain and discomfort that you are experiencing. My body just does not allow me to stay at family functions for the duration, nor does it allow me to spend hours walking in shopping malls. Because they are unable to visually see the wounds, it is hard for them to comprehend your pain. Hang in there. They will have to be educated more regarding your disease and how it changes your life. Best of luck to you.
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