Lupus? Fibro? MS??

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This_Charming_Lass
New Member


Date Joined Feb 2014
Total Posts : 14
   Posted 3/31/2014 12:49 AM (GMT -6)   
Hi guys, I have posted on the Fibro forum before, but never in here... but thinking that I should. I've been going through a lot in the past 2 months. I have been in and out of the doctors office and hospital. So, 100 trips to these facilities and about 1000 pints of blood later, we have a diagnosis. My rheumy told me that I have had fibromyalgia for 10 years, and it has gone completely undiagnosed. He also said that I am lacking in vitamin D and need to take 2,000 mlg of D a day. Also I tested positive for ANA. It is high and abnormal (1:80). He said that I don't have Lupus just yet.... wth does that mean?? shakehead  I asked him what he meant by that and this is what he said, "At this time you do not meet all of the criteria for Lupus; However, that does not mean that later down the road that you won't develop lupus. You very well could get Lupus down the road, it could be two weeks from now, two months from now or two years from now, we just don't know." He also said that with my blurred vision, migraines, dizziness and numbness that it sounds like I could have MS too.... UGH! So he wants me to get an MRI done. I am changing my insurances and it will go into effect of May 1st. So once that happens I will get an MRI done. Anyways, so I am still in chronic horrible pain, having horrible dizziness and nausea, and a host of other things (oh yeah, I have even started to loose a bunch of hair, that's fun.) So the doctor that I have gave me lyrica and trazidone, both to be taken at night before bed... still waking up in pain and of course during the day it does nothing. I am in so much pain. I am trying to do right and eat better and trying to incorporate some working out, but it kills me the next day. Well, if anyone has any words of advice... what do you guys think about the whole ANA bit and the might getting Lupus thing?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/31/2014 1:42 AM (GMT -6)   
I answered you on the fibro thread.
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
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/31/2014 10:02 AM (GMT -6)   
A positive ANA does not mean Lupus, it is indicative of many auto-immune diseases. A rheumy will narrow it down by symptoms, see www.lupus.org. There is a list of 11 symptoms that indicate Lupus, you must have at least 4 of them to be diagnosed.

MS is also an auto-immune disease, it is often verified by lesions on the brain, that's why the MRI.

Regardless of what your final diagnosis is, the rheumy should be addressing your symptoms NOW. If you aren't getting any help with your symptoms, I would recommend getting a 2ond opinion from another rheumotologist.

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

This_Charming_Lass
New Member


Date Joined Feb 2014
Total Posts : 14
   Posted 3/31/2014 11:54 AM (GMT -6)   
Hi Lynnwood, thank you for posting back. Yeah, my Rheumy isn't doing much for me... just threw Lyrica and Trazidone at me and said, well you are getting a new Doctor and new insurance in May, so.... bye.... shocked   I feel like EVERYONE I talk to thinks that I am full of crap and that I am crazy. One of my Co-Workers even said, "See, I told you it was all in your head, you are just crazy Erin, haha!" ***?!?! And my primary care Doctor is a major "B" and she just looks at me and makes me feel like I am drug seeking.... I feel lost and hopeless.

MizzFabuloso
New Member


Date Joined Apr 2014
Total Posts : 12
   Posted 4/1/2014 6:51 PM (GMT -6)   
Hi honey, it's very common for doctors to treat you this way. They became lazy and seems like they don't care atvall. The reasons for pain medication so are to improve you quality of life and ease your pain. Off course you know there is a possibility of addiction but not if you take them as prescribed. Don't give up in got 2nd 3rd and fourth opinions. ♡

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/1/2014 9:10 PM (GMT -6)   
Uh...

Lyrica (anti-epileptic) and Trazodone (anti-depressant) are not pain meds. They are also not addictive.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Lupusmadness
New Member


Date Joined May 2013
Total Posts : 3
   Posted 4/2/2014 12:26 AM (GMT -6)   
Just my experience. 10 years of symptoms as you described, with incredible exhaustion some days then perfectly fine a day then tired, but mobile after that. All joints suseptable to pain depending on movement and weather. Weird blood counts, and was told it wasn't "definitive" until finally - - - I went to the Mayo Clinic in Minneapolis with my 10 years of blood tests (rhuemys, nerologists and orthos) and the Doctor there (Osborne) said - I know exactly what you have - and he did. Lupus and Antiphospholipid Antibody Syndrome. Plaquinil and baby aspirin. one year later I am much much better. Still have symptoms but nothing like before.

Good luck. Don't give up No matter what. You will find out.
I had a shrink once ask me (when I had a terrible undiagnosed bacterial parasitic infection for 3 years), what would you do if your child (I didn't have a child) was sick. And you kept taking her to the doctor but she'd come back home and say, I still don't feel well. Would you 1) tell her she was crazy and that you spent time and money on the problem so she should accept the possibility that it was nothing? or would you 2) go to any lengths to get your little girl out of pain. Go for #2 with yourself!

This_Charming_Lass
New Member


Date Joined Feb 2014
Total Posts : 14
   Posted 4/2/2014 10:10 PM (GMT -6)   
MsFabuloso, thank you for the support, that means a lot. But the medication I am taking has nothing to do with the pain.... It literally does not help my pain at all. This is what I have been trying to tell my doctors, and they wont give me anything for the pain, I am sure they see a 27 year old girl, with tattoos, and they probably thing, "DRUG ADDICT!" But I am not... but how do you tell them that. I cried to them, telling them that my pain is so severe sometimes that I don't know what to do.... nothing.
 
LupusMadness, thank you so so so much! I really appreciate your kindness, it is what I need at this time. I do not have much of a support network here. I have zero friends, and my family doesn't understand, and really my boyfriend doesn't either, no one really gets how much pain I am in. Sometimes it is so bad, I feel I would be better buried 6 feet under. But I cannot tell the doctors that... ha, they will lock me away and throw away the key. When I change insurances I am hoping I will get some answers, and if I don't... I will go for #2 and demand that I get the help that I deserve. UGH! Today has been an awful day for me... well really the last year has been bad. I have been in a constant flair up. I am always so exhausted, and today I feel flu like and achy again like I have for the millionth time this year. And my fever is back... ugh, when will I get the help I so desperately need?

FrustratedBecka
New Member


Date Joined Apr 2014
Total Posts : 1
   Posted 4/7/2014 10:17 PM (GMT -6)   
I am going through similar issues. At first I complained about getting bad body aches all over and the one dr said I had the flu where I knew he was wrong. I switched dr. I have seen many drs by now and still not sure. Had two MRIs bc first showed one lesion so did another yr later and the same. So they say not MS. I have sleep apnea but now sleep with CPAP but I don't feel refreshed at all. Many blood test. Not Lyme disease, not cancer. I am anemic- still dealing with low iron like a roller coaster. Low vitamin d-took prescribed 2000 iud but now just small amount since that prescrp brought D back up some. Had hysterectomy, colonoscopy, upper gi, endoscopy (not sure what it's called-scope down throat) all to check for any issues (also bleed from rectum)...they found nothing wrong. Was told stomach issues prob IBS but none of the meds help. They have given me pain medication but I try not to mix work with them...try two Advil as needed. Helps some. Sometimes I hurt so much can't sleep. If I try to walk or do too much my pain gets worse. My legs feel so stiff all the time now they don't feel like they belong. I am so so tired. Memory loss seems worse I actually think I have Alzheimer's. I get dizzy at times to and feel like vomiting. My temp is hiring now-prob for about six months now but was told some ppl just have hire temp. Dr now wants me to talk to psychiatrist for depression. Also was told maybe I have narcolepsy and tried Ritalin and Provigil but didn't help much. Not sure why I am typing this. Everyone thinks I am crazy and I feel like it!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/7/2014 11:57 PM (GMT -6)   
Welcome, becka.
Make sure to post an introduction thread.
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! :))

Delmar
Veteran Member


Date Joined Apr 2014
Total Posts : 522
   Posted 4/8/2014 5:36 PM (GMT -6)   
Were you ever tested for Lyme Disease? I've been doing a ton of research bc I'm having similar issues. Lyme can mimic everything you listed. Watch the documentary "under our skin".

Lillupie
New Member


Date Joined Apr 2014
Total Posts : 4
   Posted 4/13/2014 2:37 AM (GMT -6)   
I come from a long line of people with auto immune disease but for some reason the first positive diagnosis I got was fibro too with "not quite lupus" the cymbalta helped a little but the drug that made a huge difference for me was gabepetin. My muscle and skin pain decreased drastically. Also massage therapy. Also I find compression wear like spanx or socks for old people with bad circulation help me a lot.
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