Officially Lupus AND Fibro...

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kayva61014
Regular Member


Date Joined Nov 2016
Total Posts : 22
   Posted 7/24/2017 7:11 AM (GMT -6)   
As of last week, my rheumatologist has diagnosed me with primary Lupus and secondary Fibromyalgia.

I thought, for sure, I was in a Lupus flare. So my rheumatologist did blood work. My numbers were the best they've been in like 2 years. That's when he diagnosed me with secondary Fibromyalgia.

He wanted me to start Amitryptyline but I'm trying to get pregnant and my OBGYN told me NO WAY during pregnancy. (I'm starting to think I'm crazy for trying to have another baby with Lupus and Fibro)

I never would of guessed this would be my life but what can you do.... you know?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7470
   Posted 7/24/2017 9:28 AM (GMT -6)   
Supposedly I have fibro secondary to my Lupus as well, but I've never treated it with anything other than healthy eating, sleep, and exercise.

I thought Amitriptyline (Elavil) was an anti-depressant, I didn't know it was used to help fibro.

Did you know you can be in a Lupus flare even with good numbers? We don't always have things that can be measured and counted like that. For instance, I had horrid burning pain in my toes, felt like someone had inserted burning battery acid in the joints, for over a year... never showed up anywhere, but we assumed it was Lupus-related as nothing else matched and prednisone seemed to help.

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

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 7/27/2017 10:28 AM (GMT -6)   
Amitripyline was used as an antidepressant many years ago at high doses. My rheumy put me on it for Fibro. I have not received any relief from it yet except it helps prevent my migraines. I have a primary fibro diagnosis and secondary positive ana. They suspect lupus or ra. I do get a lot of burning pain in my shoulders and legs, swelling in my hands and feet, exhaustion (I do have mild sleep apnia), hair falling out and this week I have had low grade temperatures (99-100) in the evenings.

If I were you, and you are not crazy, I would research all the medications and their side effects while discussing it with your obgyn and rheumy. I am sure you can find something safe should you get pregnant.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 955
   Posted 9/3/2017 5:13 PM (GMT -6)   
Lisa, my hair was falling out pretty bad from the amitripyline. I had finally gotten it down past my
hips and there was NO way I was sacrificing it to the God of modern medicine. True Calm which is
a NOW brand product helps with the fibro as it targets the neurotransmitters. The doctors had put
me on most things out there and 99% have reacted badly with me. No more guinei pig for me. I too
have the arthritis, fibro, lupus issues. For your acid reflux try Essiac Tea which is also herbal but will
actually heal the damage from GERD. My sister in law and husband both use it...helps a LOT. For
the migranes check out Feverfew...also herbal. Ya, never know when you can find an herbal
alternative. Good luck to all.

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 9/5/2017 7:28 AM (GMT -6)   
Thanks. I have tried Migrelief which is herbal for the migraines and it did nothing at all for me. I would love something other than amitryptine. I have read some nasty side effects. Thanks for the tip for the tea for GERD. I will try that as well.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.
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