Mild Lupus With Fibro Type Symptoms?

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Regular Member

Date Joined May 2010
Total Posts : 66
   Posted 12/23/2012 8:38 PM (GMT -6)   
Ok, i'm confused for sure now.
Due to ongoing problems I have I went to a Neurologist and she ran a bunch of blood tests as well as a Cartoid Doppler, A brain MRI and an EEG. ALl those were ok but due to a low positive ANA so she has dx'd me wild mild Systemic Lupus with Fibro type Symptoms. confused   And I don't have Rhuematoid Arthritis like drs thought.
I have 6 of the 11 symptom criteria. I am Vitamin D deficient. It was at 8. I also have Chronic Anemia bad to the point she says that I need a blood transfusion. But since I was due to have a Endometrial Ablation a couple of days later she wants to wait a month to see if that will help my anemia.
She didnt want to prescibe any medicines at all for anything. mad
I am currently on Gabapentin, Ferrous Sulfate and Ibuprophin. Meanwhile i'm just supposed to set back and wait to see what happens. shakehead
I'm wondering if I get some Over The Counter Vit D3 if that would help any of my fatigue and dizziness in a month? My fatigue is so bad I basically have become homebound only going out for drs apptmnts. I barely have any strength to take a shower or even wash dishes it's that bad.
I have gone in a year and a half from working a full time job to being barely able to get out of bed.
I'm so sick and tired of being sick and tired. mad

Post Edited (txplowgirl) : 12/23/2012 7:42:38 PM (GMT-7)

Forum Moderator

Date Joined May 2005
Total Posts : 7673
   Posted 12/23/2012 9:06 PM (GMT -6)   
If your Vit D was seriously low I think she would have given you a pre3scription Vit D or at least told you how much OTC Vit D you should take. That said, I don't think some OTC Vit D could hurt, and you might take Vit B 12 as well for energy. Also eat healthy foods, get deep restorative sleep, and try to do a bit of mild exercise (just walk to the mailbox!).

Really, I would recommend seeing a Rheumotologist. Neurologists are good for lots of things, but a Rheumy is trained in Lupus, RA, and Fibro -- a Neurologist is NOT. A neurologist is also NOT trained in treating Anemia.

Take care,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/23/2012 9:14 PM (GMT -6)   
I have lupus, fibro, and vitamin D deficiency. I was at an 8 on my first test also. I take 50,000 IU of D twice a week (Tues/Fri) and 800mg of folic acid.
You need regular blood work to monitor your levels. Too low of D can cause many troubles including more pain and fatigue.

I agree you need to see a Rheumy to help you out.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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

Regular Member

Date Joined May 2010
Total Posts : 66
   Posted 12/23/2012 9:46 PM (GMT -6)   
Thanks for then quick replies.
I have Insomnia so bad I have to take generic form of Ambien Timed release or it wont work.

It was a Rhuemy who dx'd me with Fibro 5 yrs ago as well as Chronic Fatigue and Athralgia. I was gluten free for a couple of years but I slowly went back to eating whatever I wanted. I did feel better I guess I need to go back to a whole foods diet.

The only Rhuemy is a 2 hour drive in any direction from me has a 6 month wait. Grrrr. I think going back on the diet and taking Vit D as well as other supplements is what I need to do rather than waiting and hope I get on more precriptions. I've got to do something. I feel like i'm gonna pass out every time I stand up. I get so dizzy and wobble as I walk.

These are some of my test results and the ranges.

Vit B12 is 546, range is 200-1100,
Iron is 37, range is 50-170,
Ferritin is 9, range is 8-252,
Hematocrit is 26.8, range is 36-60,
Albumin is 3.9, range is 3.5-5.7,
Protien Total Serum is 6.3, range is 6.4-8.9,

The ANA dosent have any ranges that I can tell. It just says low positive, and the paperwork says I have a Connective Tissue Disease. Does that mean the Lupus? She said the bloodwork says that I didn't have Fibro or Rhuematoid Arthritis. But I do meet at least 6 of the 11 Criteria.

Anyway, i've gotten farther with her than I have any of my other drs. I switched from a male OB/GYN that I have been with for over 7 years to a female and within 2 visits I ws dx'd with Endometriosis and had an Endo biopsy. That was fun. And had an Endo Ablation a week later.

I'm so tired of drs giving me the run around.

As far as walking to the mailbox and back for exercise. It makes my fatigue and pain worse. Like I said earlier taking a shower takes it out of me where I have to lay down for a couple of hours to recover.

Anyway, thanks for the replies.
I'm In Pretty Good Shape For The Shape I'm In.

Quote is from my daddy.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/24/2012 12:02 AM (GMT -6)   
Yes it does look like your iron is low too.
My rheumy is 2 hr drive too so he has opened a second office that is open 2 days a week just an hours drive from me. I was very fortunate to find him. There is only 3 rheumys in a 2hr radius of me. Two of them have a poor rep.

I found that uping my D and folic acid has helped me a lot. I'm still fatigued most days but not totally paralyzed.

I hope the diet helps you again.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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 12/24/2012 12:57 AM (GMT -6)   
Hi and welcome, I'm sorry that you're having to deal with this disease. I can totally understand feeling like they are giving you a huge run around.

I've had lupus for 25 years, but lupus is the disease of a 1,000 faces, and it took the Dr's 13 years before I got a firm, yes I have it. I was actually told I had Fibro before my lupus. There is NO blood test for Fibro, since Fibro isn't an auto immune disease. RA is determined by blood work, I was told in 2008 that I also have RA in addition to my lupus and RA.

It's common for folks with auto immune disease's to have more one. It looks like you're pretty anemic. That can also be caused by the lupus, however, if you're having GYN issues, it may clear up once you're treated for that condition.

I agree you need to see a Rheumy, they'll be the one to figure it all out. Hopefully, you can get in to see one ASAP. The important thing is that they treat your symptoms, even though you don't have a firm diagnosis. Some of us have been thru multiple Rheumy's before we get the right one.

Try not to get really discouraged, I'd do whatever you need to as far as getting a referral and get in to see the Rheumy. Please feel free to come and vent or ask ?'s. This forum has loads of great people and we're always happy to share info.

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