Trying to figure out what's going on...

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amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 1/6/2017 6:52 PM (GMT -6)   
I've not been feeling good for awhile (I won't go into huge detail since I'm posting this using my phone and no keyboard), recurrent sinus infections (past year or two), swollen lymph node in neck (scan results next week). My nurse practitioner decided to do some blood work. My CH50 was abnormal so she referred me to a rheumatologist. After examination he said he thought it was fibro. He ordered labs and xray. The clinic has an app that sends me an email when new information about my account is posted. I received my lab results yesterday and today. I will post them and see what you all think. I appreciate your opinions and experiences.

Sed rate 12 mm/hr
Creatine 30 u/l
RF <10.0
Uric Acid 3.0 mg/dl
Vitamin D 50 ng/ml
ANA Reflex 1:80

The only one that I see as abnormal is the ANA. I read only that is considered low positive or normal.

Post Edited (amyl4500) : 1/26/2017 5:05:37 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7415
   Posted 1/10/2017 1:10 PM (GMT -6)   
Lupus is not diagnosed by bloodwork alone, but then neither is fibro. The bloodwork is only part of the picture, the rest is provided by your symptoms and circumstances. Check out Lupus 101 for more details.

I hope your rhuemy is meeting with you soon and providing some treatment that will get you feeling better!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 1/10/2017 2:22 PM (GMT -6)   
Thank you. I have read over that. I have some of the symptoms as well. I was told 10-11 years ago I was borderline Lupus but not enough to diagnose, so he diagnosed me with Fibro and said there is nothing I can do for you. I saw another physician who put me on 4 diff. meds and I got better and a few years later I weaned myself off all but 1, due to job loss and could not afford them all. I have done pretty well the past 7 years, although the last year I seem to have gotten worse again.

I have new blood work results that have been added to my patient profile according to the app.

ANA Positive
Homogenous Pattern 1:160
C-Reactive Protein, Quant (CRP) 0.800 mg/dL (says normal range 0.00-0.500)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7415
   Posted 1/10/2017 3:07 PM (GMT -6)   
What meds were helping you? Sometimes they decide between fibro and Lupus depending on what meds we improve with. For instance, Prednisone generally helps Lupies, but rarely does anything for people with Fibro.

When do you see your rheumy again?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 1/10/2017 4:09 PM (GMT -6)   
I see him the 25th. The previous Dr. prescribed adderall, klonopin, cymbalta and one more that I can't remember. I am having things happen this time that didn't before. Like today at work I had to work on getting 551 envelopes stuffed with 8 pages of paper (trifold). My hands are hurting and tight feeling, knuckles are red. Finally my boss asked the other girl in the office to help me.

In the summer when I am out in the sun I do not get the butterfly rash, my nose seems to be the only place on my face that burns.

My lower back feels really tender sometimes, to the point if someone touches it I jump. I get sharp pains in my knees and elbows.

Seem to be having more headaches than used to, sometimes like a migraine.

If I am up on my feet a lot I spend the next day on the couch with heating pad. My hands and feet feel what I call puffy and tight.

I have been keeping a journal with how I feel good/bad each day. It is hard to remember everything it seems.

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 1/10/2017 4:21 PM (GMT -6)   
I meant to add that I have had recurrent sinus infections for the past year or more. Have received numerous steroid shots and antibiotics to treat them. Right lymph node stays swollen, size varies, but never fully goes away. Have been sent to allergist with result of "its not allergies" causing it. ENT said I had a swollen concha bullosa, which he removed. Sent to surgeon to see if needed biopsy of lymph node, results were "it is swollen, but no abnormalities seen". So still no answer to why I stay sick with what appears to be sinus infections a lot. Have been on Allegra-D for over a year as well, was taken off and prescribed 30mg of sudafed twice a day for 16 days and antihistamine - Xyzal 5mg.

Also, ears have been retracted and contain fluid for at least 2 months now. My nurse practitioner does not understand why I am not getting better that is where the blood work began.

Post Edited (amyl4500) : 1/10/2017 4:18:24 PM (GMT-7)


Dustmite
Regular Member


Date Joined Jan 2017
Total Posts : 46
   Posted 1/15/2017 4:28 PM (GMT -6)   
Your creation level is very low. Mine is 53 and I have stage 3 chronic kidney disease. Make sure you get that creation level checked out I think its quite low and its suppuse to be high.

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 1/18/2017 9:27 AM (GMT -6)   
The rheumatologist has rescheduled my appt. for 1/26. I have had more bad days than good. I had vertigo a few times since last dr appt. The Vimovo he has me on has caused what appears to be petechiae (sp?) on my upper right thigh. Tried to call them yesterday and they are out until tomorrow. I had a really bad headache and nausea Sunday, what I would call a migraine. I do not feel well and it is affecting my work. I am trying not to call in sick so I can save sick time in case I need it.

I will post what rheumy says after appt. on 1/26. Thank you for your responses.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7415
   Posted 1/18/2017 11:52 AM (GMT -6)   
I know the 26th seems a long way away, but it's really not. Just hang in there and do the best you can!

Take your list of symptoms, by date & duration they occur if you can. I find if I take 2 copies, the Dr can read one and I can follow along on my copy.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 1/18/2017 4:08 PM (GMT -6)   
Lynnwood, good idea. Thank you

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 1/26/2017 6:01 PM (GMT -6)   
I had my follow-up today. He left my diagnosis as fibro for now. He has ordered more Lupus lab work he called it. He told me to stop the Vimovo everyday and only take as needed and that I can take up to 6 Tylenol a day. He wrote an rx for physical therapy for what he thinks are muscle spasms causing my back pain. He said he will call him if lab work shows something, otherwise return in 3 months.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/26/2017 9:51 PM (GMT -6)   
Long term use of Tylenol at 6 times a day can ruin your liver and stomach.
I can't remember if you can take something like tramadol. It really helps my pain when I'm flaring.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 1/27/2017 7:47 AM (GMT -6)   
I will post my lab results when they return. I wish he had ordered the additional lab work before my appointment so we could have discussed it yesterday had there been any abnormalities. There were 3 weeks in between my appointments and the first lab work was back within a week, so 2 weeks would have been plenty of time to call and have me get it done.

Just my opinion, I am disappointed he did not offer me any help with fibro if it ends up being that. I thought they prescribe Lyrica or something for it.

amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 2/2/2017 6:34 PM (GMT -6)   
Update....

Lupus panel all within normal ranges. Rheumy said fibro and return in 3 months.

My back pain is getting me. I missed work yesterday and left early today. I visited my nurse practitioner again this morning. She has been on maternity leave, so we discussed my issues to get her up to date. I found out she has an auto immune disease and had seen the same rheumy i did and was not happy with his bedside manner. I agree with her. She is not convinced that his dx is correct. Another appt has been made with rheumy in neighboring state.

She took a urine sample due to back discomfort to check for possible UTI. I have a uti, but some of the results were higher than she liked. Said there is protein showing up. She is checking to make she it hasn't gone into my blood. I will know tomorrow.

In meantime I wait in pain and discomfort. She prescribed 30mg of Prednisone a day to try and help me feel better until we find out more. Should feel better in 24 hours, if not, I am to call and let her know. She feels something systemic is going and said she's giving up until we know for sure.

Post Edited (amyl4500) : 2/8/2017 2:34:41 PM (GMT-7)


amyl4500
New Member


Date Joined Dec 2016
Total Posts : 10
   Posted 2/24/2017 8:39 AM (GMT -6)   
Follow up after seeing 2nd rheumy. He agreed its Fibro. Put me on 20mg Cymbalta daily. I am not liking it so far. Day 1 woke up nauseated and diarrhea, better at lunch. Day 2 woke up with headache and feeling very groggy, out of sorts like. I have had to make myself eat breakfast and lunch, by dinner I am ready to eat. I will move over to the Fibro board instead of posting here.

Thanks

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7415
   Posted 2/24/2017 8:54 AM (GMT -6)   
Thanks for letting us know, I hope once you get used to it that the Cymbalta helps. Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2592
   Posted 3/18/2017 12:12 AM (GMT -6)   
Fibro is a difficult disease to handle because there's no pill that will make it go away. I used to take a narcotic to ease the pain but weaned myself off of it because i didn't want to become dependent. What I have found that helps me the most is water. I take a long hot soak in my tub at least once a day and I swim or do water aerobics two to three times a day in a warm pool. My insurance pays for physical therapy in water so you might check with your rheumatologist and your insurance company to see if that is an option for you. My rheumatologist prescribes it for my fibro & I supplement it at a different indoor pool. Your rheumatologist will probably tell you to do some form of exercise. Walking is good, but if you get a lupus diagnosis, you'll want to avoid the sun.

Limiting my sugar really helps, as much as I hate to admit it. My body really complains the day after I indulge. A good diet is critical to staying healthy.

I hope the Cymbalta helps.
SLE, fibro, renauds, restless leg
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