Lupus or Fibro?

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Becky20
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Date Joined May 2014
Total Posts : 68
   Posted 5/28/2014 5:38 PM (GMT -6)   
I'm struggling to deal with this. I went to a regular dr to find out what's wrong with me. My main symptoms:

VERY TIRED all the time - falling asleep in the middle of the day can't keep my eyes open, difficulty falling asleep at night with or without an afternoon nap, hair loss, weight gain, pain in my back and feet worse in the mornings aka difficulty getting out of bed, pain in my pelvic area so bad sometimes I'm unable to stand, carpal tunnel symptoms, feel like I've run a marathon and don't feel rested when I wake up each morning, leg cramps sometimes at night, definite PMS symptoms and very heavy menstrual cycles and acne, headaches when the weather is stormy. I've always been very sensitive to the sun (my arms and face turn bright red with just a few mins in the sun, burn very easy) and my joints pop AND grind like crazy.

I have 2 flat feet and TMJ - not just pain in my jaw the actual jaw joint has worn away on both sides of my jaw. Both conditions were diagnosed 10 yrs ago. My mother has an autoimmune thyroid disease and my dad has 'rosacea' and heart problems.

My regular doctor ran cbc, thyroid panel, and ana tests. She noticed a slight problem with my breathing. She didn't discuss that with me as whatever it was was very mild.

Tests came back: Vitamin D deficient, ANA positive 1:320 homogenous pattern. My regular doctor suspected lupus or RA. She also suspected I have high estrogen. I tended to agree with her and she referred me to a rheumy. 1 month later the rheumy did a few tests for RF and antibodies. My ANA came back high positive again (0-10 normal and it was 15). ssDNA was high. SED rate was below normal (I took aleve for a headache before the test).

My Rheumy did not check my joints other than my hand. She did not order ANY xrays to check any of my joints. I was given the diagnosis of fibromyalgia. I've seen the rheumy 2 times, once for the blood tests and today for her diagnosis. I took pictures to show her the skin changes from the sun and kept a journal. She passed the journal back to me and glanced at the pictures and said I get patchy red in the sun cause I'm pale. She told me I will NEVER have lupus or any other rheumatic disease and any further blood tests are pointless and would do more harm than good, and the ssDNA and ANA results meant nothing, and high estrogen levels have nothing to do with 'what I have'.

I'm not sure what to think of this. It feels way too quick and final of a diagnosis considering everything =/ I had to keep asking... well why does the ANA come back so high if I only have fibro, what about the ssdna being high, what about my estrogen could that be having an affect on anything? And I was pretty much straight out told it means nothing, I have fibro.

ilsegrrl
Regular Member


Date Joined Apr 2014
Total Posts : 53
   Posted 5/28/2014 6:29 PM (GMT -6)   
Wow, that's frustrating! Did your rheumy even do a tender point exam? I mean, I know that's not the end-all, be-all of diagnosing fibro, but my rheumy goes through the whole head-to-toe exam with me every appointment to see if there's any change (positive or negative).

How can a doctor tell you that you will NEVER have a particular disease? I mean, unless you literally can't for an obvious reason, like one can't get prostate cancer if one is female...

I'd go to a different rheumy for a second opinion.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/28/2014 7:51 PM (GMT -6)   
I agree, find a new rheumy.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/28/2014 8:25 PM (GMT -6)   
I tend to agree that a second opinion is needed to set your mind at rest.

One way to find a Rheumy interested in Lupus is to check out www.lupus.com and find your local chapter. Then contact the local chapter to see which of your local rhemies is on their advisory board. Those very often are the Drs actually interested in helping!!!

Good luck.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 5/28/2014 9:28 PM (GMT -6)   
Thank you for your thoughts on this. It was very frustrating today. She was saying 'fibromyalgia' as soon as I walked in the door the 1st time and again today. I've read that labs can change over time and I read a lot of stories of people being diagnosed with fibro or just kind of sitting on the fence for a long while before a lupus or other autoimmune diagnosis was reached. She touched NOTHING other than the fingers and joints on my right hand. My regular dr at least checked my range of motion. The rheumy made her opinion very clear that I could never have lupus or other rheumatoid/connective tissue disease due to the results of my recent blood tests.

I will definitely get a 2nd opinion with my regular dr I think. The rheumy seemed absolutely clueless that estrogen has a connection to autoimmune diseases. It was very disheartening to be told that I will never have any clear answers therefore there's no point in trying. To be honest it hurt. I told the rheumy that this was frustrating and I didn't feel that it fit and she responded that almost all her fibro patients felt the same way. I've read and read so much about these things lately and still am just as confused as ever sometimes. But it seems striking to me... 2x High ANA homogenous pattern, vitamin D deficiency (18), high ssDNA, high estrogen. Add heavy fatigue, joint pain, hair loss etc... I just don't see how or why the rheumy completely ruled out an autoimmune/hormone relation. Oh and according to her I'm also completely cancer free. I'm glad she feels so confident on that as well... other than the ANA blood test I'm unable to see how she can make that decisive judgment call either.

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 5/28/2014 9:34 PM (GMT -6)   
Thanks Lynnwood, I looked at the lupus.org website earlier and I'm in the middle stuck between Nashville and Atlanta. I will definitely use it to try to find someone in or near my area, and do more research on their background. My regular doctor had one to suggest last time but referred me to this rheumy because they were able to see me sooner. Unfortunately she did not give me the other rheumy's name.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/29/2014 10:11 PM (GMT -6)   
Becky I'm sorry that your second appointment didn't go any better with this Rheumy. I agree with the others you need a 2nd opinion. Lupus is such a hard disease to DX. It took my Doctors 13 years before they finally said yep I had the darn thing. I got my Fibro DX much quicker and before my lupus one. The I got my Fibro DX in 1998, then I got my RA DX in 2004 after Lupus DX in 2001.

I know this is all very frustrating to you, it is for a lot of us. Some of us go thru like 5 or 6 Rheumy's before we get the correct fit. It sounds like you may have Fibro in addition to something autoimmune going on. It is common to see lupus patients with another issue like Fibro or RA. I"m one of the lucky few who got both with my lupus LOL. I have days when I can't determine which disease is making me feel so bad.

As to her assertion that you'll never get cancer she can't tell you that. No doctor can tell you that, if you're really worried about it ask you GP to send you to a Hem/Onc and have them look at you. Last year in May I learned that I do have T-cell LGL Leukemia and my positive ANA really had zero bearing on my DX. It was based on my bone marrow biopsies, my CBC labs, and my need to have blood transfusions all the time. They knew that I had an issue for several years before they caught it. The type of leukemia I have is a common one in RA patients and patients that have autoimmune diseases.

There isn't a cure for LGL Leukemia and most patient live 5-8 years, some to 10. That is IF an infection doesn't kill you prior to that time frame. They can attempt to control this type of cancer but once it's active you must start traditional chemo and hope for the best. While it's inactive the normal drugs used to treat it are steroids, Methotrexate, Cytoxan, and Cyclosporine. Like I said if you're really worried about a cancer then I'd ask to see the Hem/Onc doctor they do know their stuff.

I hope that you can get a 2nd opinion soon and get some answers and treatment very, very soon. I know how frustrating all this is really I do. I've gone thru it so many times. Hang in there and if you have any questions please come back and ask away. If you want to reach a specific person you can click on their name and see if they have an email provided. You can then email them, or just put a post in for them.

Take care and let us know whats happening once you get in to get your 2nd opinion. Good luck to you.l

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 6/8/2014 7:41 PM (GMT -6)   
Thank you Barbara, it means alot to hear your testimony and experience. I'm so sorry to hear about the leukemia =( My purpose is for my children, if anything I find out will help them and hopefully with more research and strict attention to their health... I have hope for their future and their children. There are links to this somewhere and understanding the cause of this, just feels like it's nearly within reach.

I found a local support group but they can't give recommendations. So I took to facebook and got some excellent feedback. Since I put my query on facebook, my great aunt responded and said "Do you have lupus? You know that runs in our family!" No, I and my mother did NOT know. Apparently my great grandmother and a cousin died from it several years ago. My great aunt's daughter was diagnosed with lupus at 34, barely survived kidney problems 4yrs ago and has to take chemo pills. There are 3-4 other cousins stemming from my great grandmothers descendants that have lupus. That makes at least 6 family members with lupus. My great aunt has fibro. My mom has an autoimmune thyroid disease. Altogether this is an incredible page of family history that we were missing. We had NO clue lupus was in our family or how extensive the autoimmune diseases were.

I also heard from a coworker, who's daughter has lupus... her doctor was out one day and she saw the same dr who saw me and that dr told her she couldn't possibly have lupus and wanted to change her treatment. Her daughter told me to absolutely without a doubt go see a different doctor and never see that rheumy again.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 6/9/2014 5:26 AM (GMT -6)   
I think you're on the right track. It's very common for people with autoimmune disease to change rheumatologists until they find someone who will take the time to get to know you and come up with a thorough diagnosis and treatment plan.

If I were you, I'd type up your complete medical history including any and all symptoms, a family history, your surgeries and diagnoses, and take it to your appointment with your new rheumy.

Don't second guess your instincts. If you're uncomfortable with a doctor, change. It can be a frustrating process but it's worth it.
SLE, fibro, renauds, restless leg?

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 6/19/2014 5:10 PM (GMT -6)   
Just an update. At first my PCP was shocked about my blood tests, that I was diagnosed with fibro and that the rheumy said I did not have an autoimmune disease nor would I ever have one. She went and called up the rheumatologist and when she came back in the room she was agreeing with the rheumy. The rheumy told her that ANA 1:320 was low. But the pcp said she still thinks I have an autoimmune disease just not lupus because my dsDNA was negative. She recommended I go back to the same rheumy for the followup and I said no, I wanted a different opinion. My PCP has put me on cymbalta for fibro and the fatigue and plaquenil for the joint pain, and will refer me to a different rheumy. I think my pcp thinks I'm a hypochondriac now after she talked to the rheumy and after I requested a different rheumy. She was giving me a wide eye, 1 raised eyebrow look. =(

When I called the pcp office and asked for the referral, the dr said she wanted to see me to discuss the results. So I came in. I should have just stuck with the referral, I thought she had a better clue about the antibody test results than I did but she didn't which is why she called the rheumatologist. I dropped off my results 2 days prior to the appointment so she would have a chance to look them over first. *big sigh*

So being my own advocate here... do you think it's a good idea to start both at the same time as the pcp recommended. Or take plaquenil and wait a little while before adding the other to see how they each affect me?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/19/2014 5:24 PM (GMT -6)   
Take both, plaquenil takes several months to build up.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/19/2014 5:25 PM (GMT -6)   
Plaquenil can take up to 4-5 months to build up in your system before it becomes very effective, so there would be no information gained by waiting a bit to start the Cymbalta. I'd go ahead and start both.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 6/19/2014 5:30 PM (GMT -6)   
So if I start to feel better within the next 2 months I can assume it's the Cymbalta? And if there's less pain in 4-5 months, the plaquenil? Thanks for the help!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/20/2014 1:14 AM (GMT -6)   
It took me only two months to feel the effects of the plaquenil.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 6/20/2014 11:57 AM (GMT -6)   
Becky, I see I'm in the minority here, but I wouldn't start them both at the same time. I have fibro and UCTD, getting the fibro dx almost 10 years before the UCTD. As I understand it, Cymbalta also takes some time to reach a therapeutic effect. It was prescribed for me, at one time by a neurologist, but I decided not to take it. Later, when the rheumy started me on Plaquenil, I started to feel better within 3 weeks. Hair loss slowed way down and fatigue began to lessen. So you may notice some difference sooner that 2-3 months. Starting both at the same time will certainly make it difficult to determine which is the source of any relief. I know you want to feel better soonest, but I personally would start with the Plaquenil.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/20/2014 12:05 PM (GMT -6)   
Sometimes it makes more sense to find out the facts from a neutral source.

www.drugs.com/cymbalta.html

www.drugs.com/plaquenil.html

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 6/20/2014 1:34 PM (GMT -6)   
This might be a good question for the pharmacist too. Did I mention I have petechiae all over my body and the very heavy periods... the dr's say its caused by high estrogen. Under cymbalta "Tell your doctor if you have: a bleeding or blood clotting disorder" yesterday I discussed the high estrogen with my pcp as well and she didn't mention any problems taking the cymbalta. I'm just starting to use a progesterone cream to balance it out...

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 6/30/2014 7:39 PM (GMT -6)   
A new development today. I have a ruptured varicose(?) vein in my left leg. It looks bad and feels very odd. I never had this before and went to a walk in clinic. I have a mild fever 99.1. And will be scheduled to have an ultrasound tomorrow. Guess this is just another thing to add to my list of symptoms and could it be caused by.... ? It's kind of scary, wondering how bad this could be and what all is affected. But maybe it's a good thing that I'm already on the plaquenil and on my way to figuring this out.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/30/2014 10:10 PM (GMT -6)   
Ouch! I bet that's painful.

My mother has horrible varocus veins. They look like knotted ropes running up and down her legs. I have spider veins scattered around my legs.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/30/2014 11:06 PM (GMT -6)   
Becky:

Sorry to hear about the ruptured vein. I know that varicose veins can be really painful, I'm sorry that you're having to deal with them.

I'm not 100% sure they are related to your lupus. I know when we were stationed in Italy back in 1993-1996 the young woman that lived above us had issues with them. She was only 25 or 24 years old and had them so badly that she had to have her legs operated on to repair them.

See what the ultra sound shows and then see your Rheumy about them. If they can't assist you then ask to see Dermatologist or maybe a Plastic surgeon. I was just told my back has some varicose veins on them now. I'm not going to get worked up over it to much.

Try not to worry sweetie okay, you'll find things will come and go and you deal with them one at a time. Yes, it can feel really OVERWHELMING, but you'll get thru them on your own, or with help family that you have in person, or with those of us here for you.

I hope you start to feel better and I hope the plaquenil kicks in really soon for you. Take care and have a good nights sleep tonight.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 7/1/2014 9:19 AM (GMT -6)   
Thank you for the insight. This came up out of the blue. I have a few small spider-like veins on the back of my legs. It popped up behind my knee where I have some stretch marks. No idea if my temp is related to this or that. I wonder if I have vasculitis and it's related to the petechiae....

Sunset14
New Member


Date Joined Jun 2014
Total Posts : 13
   Posted 7/1/2014 2:55 PM (GMT -6)   
Hey Becky,

I showed my boyfriend your post since he has had some similar issues. He's been diagnosed with Behcet's Disease and RA. He also suffered from long term TMJ issues. After 12 years of the bones decaying he ended up having both TMJ's replaced.

Prior to the joint replacement he also had horrible sleep apnea. Because his mouth didn't close properly at night he would wake up once every 30 seconds and almost never got into REM sleep. Like you, he was always tired, wanting to sleep during the day but having a difficult time doing so at night.

One other note, he had a very difficult time getting insurance to cover the TMJ replacement as they wanted to call it dental. After the sleep study and diagnosis of severe sleep apnea, the insurance couldn't deny it and immediately authorized.

Finding the right doctors is everything Becky. Some may make you feel like a hypochondriac, others simply don't see enough cases like us to properly diagnose them. Keep searching, find the right docs.
DX- SLE, Arthritis, DDD Lumbar, Hypertension, Hypothyroidism, Diabetes, and MDD
Medicines - Methotrexate, Folic Acid, Hydrocodeine, Etodolac, Ibuprofen, Acetaminophen, tizanidine, Norvasc, Levothyroxine, Metformin, Glipizide, and Viibryd

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 7/1/2014 6:34 PM (GMT -6)   
Thank you Sunset14. It really does mean alot to me to have this support and hear similar stories. It gives me hope that the answer will be found and that I'm not alone.

I've met my deductible so I'm anxious to get as much done and figured out before december as I can. Next step is the dentist and a panoramic xray. It's been 10yrs since the last pan and the tmj diagnosis. My jaw hasn't given me consistent pain and swelling since I was a teenager, every now and then it is achy and causes some difficulty. The new rheumy appointment is at the end of Sept, but I'm on the list to be called if anyone cancels... A nurse I spoke with last night said "you sound like you're going through the same crazy things I did" she was diagnosed with undifferentiated connective tissue disease. I guess it is a toss up right now what it can be. But if someone can start putting a name to it, I think that would help on so many levels. If I have to wait and watch until something conclusive turns up then so be it. I can deal with that as long as I know I'm in good hands.

I was 7 when my great grandmother died. In the year or 2 before her death, her fingers hands toes and feet turned gangrene and were amputated. It seemed to climb up her body. It gave me horrifying nightmares at that age. There's no telling what all lurks in my family history. Thank you again, to everyone for the support and encouragement

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 9/30/2014 6:19 PM (GMT -6)   
I had to stop by... the new rheumy says I more than meet the criteria for lupus, his opinions were not based solely on my blood work. He was VERY thorough, discussed everything. Examined me from head to toe checking my joints tender points etc. He says I do NOT have fibro and wants me only on the plaquenil. I may or may not find out more after the xrays and results come back. Kinda have mixed feelings. Relieved that I'm finally in good hands and the confirmation that I am not crazy. But it's so-so because it's not exactly great news either.

Thanks to everyone for encouraging me to seek a 2nd opinion and hang in there. :) PS. the plaquenil by itself is helping. I went through the month of August and the tail end of July virtually joint-pain free. Until I got uber stressed at the beginning of Sept and felt like I was hit by a freight train.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/30/2014 7:16 PM (GMT -6)   
Great that you are in the hands of a competent rheumy and are feeling better!

If you do get stressed and find it increases your symptoms don't hesitate to visit the Dr and see what they can do to help you out. Stress can kick of Lupus symptoms that don't necessarily go away when the stress leaves -- treatment is often needed!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde
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