Learning to cope with two chronic illness

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Hailie
New Member


Date Joined Jan 2015
Total Posts : 18
   Posted 1/31/2015 8:25 PM (GMT -6)   
Hello. I'm Hailie and within the last year have been diagnosed with SlE lupus and finromyaglia. First came the diagnosis of lupus then 7 months later fibromyaglia. I am 26. I planned this active family oriented life, I have a wondeful boyfriend and we have no children but desperately want (but wouldn't dare try now) and now I am feeling a loss because of how careful i have to be because of my stres and physical activities triggering my illness. Any advice on how to cope with this new Path been given?
The worst symptoms I suffer with are exhaustion, brain fog, confusion, pain in feet. These have ultimately lead to me being off work (I am a nurse). I am taking plaquinil 400 mg daily. Naproxen 500 mg twice a day. No change and it's been 1 1/2 months since beginning the medications.
All responses are welcome. Looking for all the support I can get. Xoxoxo lots of love.
Hailie

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/31/2015 10:21 PM (GMT -6)   
Are you seeing a rheumatologist? They will be able to treat you for both diseases. I also have both and it takes a while, but eventually you will be able to tell which illness is acting up at any given time.

Plaquenil is more of a disease-inhibitor, you don't really see any change in Lupus symptoms you already have but it helps keep you from getting new symptoms. It has to build up in your body, you may begin to notice effects after 8-10 weeks. (Plaquenil isn't known to have any effect on Fibro.)

Naproxen (Aleve, right?) may have some effect on Fibro but isn't usually used for Lupus and I doubt it will help you any.

Have you had an ANA test? How are your inflammation numbers? What is your rheumy thinking? Or if you haven't seen a rheumy, please find one asap - they are the specialists in both Lupus & Fibro, other Drs are just not nearly as well educated in these illnesses.

You probably need something for inflammation (if you have inflammation, that is the Lupus). One of the ways they differentiate between Lupus & Fibro is that Lupus responds to Prednisone (anti-inflammatory) and Fibro does not. Otherwise it's impossible to tell the difference.

Are you getting good sleep at night? Sometimes we don't sleep well and need a sleep aid and that ends up helping with the fatigue. Eating well? Maybe add some B12 to your diet.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/1/2015 1:43 AM (GMT -6)   
From my tag you can see I have multiple illnesses too.
fibromyalgia waxes and wanes and you have to learn your triggers. Stress is a big trigger for both. If you post in the fibro board you will get some great ideas on coping with the randomness of fibro.

As for the lupus are you protecting yourself from UV rays? I know when I get exposed I feel terrible. You can get UV protective clothing at many places. I use coolibar.Com clothing mostly.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

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

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 2/1/2015 6:47 AM (GMT -6)   
As you can see from my tag I have quite a few immune system illnesses. It seems every year or so something new comes along. I've just accepted that my immune system doesn't really like me very much and it's like trying to keep a group of squabbling kids happy. When ones happy the others kick off, a lot of the time it's a balancing act and am determined that it isn't going to beat me - yet.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, short bowel syndrome, many surgeries for abscessses & strictures. Lupus - caused by Humira, nerve damage, 6 displaced discs in neck and 1 in lower back. Hyperparathyroid disease. Azathioprine, immodium, fludrocortisone, oxycodone, gabapentin, amitriptyline, vit d

Hailie
New Member


Date Joined Jan 2015
Total Posts : 18
   Posted 2/1/2015 9:31 PM (GMT -6)   
lynnwood - i do have a rhuemy - i don't trust him very much. he seems to only focus on the lupus and seems uncomfortable with fibro.
m lupus presented with many physical symptoms - mainly cognitive - and no inflammation present. blood work was ++ ANA and smiths titre. my hemoglobin, iron and B12 are chronically low. but i find vitamin supplements make me ill - just maybe validating that thanks to you Joy! woohoo love when i can validate what my body is trying to tell me with evidence.
sleeping is very difficult but i use meletonin which is my god send! xoxo all the best bailie
thank you so much for your replies
Stripey - i can relate to you - you fight many illnesses and i admire your strength - helps me build mine!
SLE Lupus, fibromyalgia

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/1/2015 9:41 PM (GMT -6)   
Most rheumies will focus on the more serious condition first - so I have no argument with your Dr treating the Lupus first. It's symptoms, in my experience, far overreach those of my fibro.

If you really don't trust your rheumy, find another. It's a collaborative effort and it takes both you & the Dr to make things happen.

If you can't take vitamin supplements then augment your needs with the appropriate vitamin-rich foods. Or keep trying supplements until you find what works...they have vitamin-rich shakes & drinks now rather than pills that might be easier on you.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/2/2015 12:52 AM (GMT -6)   
Watch out, the melentonin will trigger flares. Don't know why but it raises your immunity. I was told to avoid it by my doctor.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

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

Hailie
New Member


Date Joined Jan 2015
Total Posts : 18
   Posted 2/2/2015 8:56 AM (GMT -6)   
Lupus flares joy?
SLE Lupus, fibromyalgia

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 2/2/2015 1:03 PM (GMT -6)   
Trouble is all my illnesses have very similar symptoms so no idea which one is causing what at any one time.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, short bowel syndrome, many surgeries for abscessses & strictures. Lupus - caused by Humira, nerve damage, 6 displaced discs in neck and 1 in lower back. Hyperparathyroid disease. Azathioprine, immodium, fludrocortisone, oxycodone, gabapentin, amitriptyline, vit d

Ashaline
Regular Member


Date Joined Oct 2014
Total Posts : 82
   Posted 2/2/2015 3:14 PM (GMT -6)   
Hi Hailie! I have both fibro and lupus as well. It all came out after I had my son. Things have been hard, but over time (six years now), I have learned how I need to live. I am still active. In general, the fibro is harder to deal with and a constant companion that is on the verge of showing up, or rather getting worse. But, I am doing it! I rest when I need to, I do what I can, and rejoice in the good days. The first two years were a getting to know you phase. I just didn't know what to expect, now I know how things will go more and I can deal with it better. I have also learned to tell the difference between the two, for the most part. I'm sorry that you have this diagnosis, but be sure not to let yourself think life it over. Life has just changed a bit, and there is still much to be enjoyed.

I would find a new rheumy. My first one was not so good, the second one has been wonderful and compassionate. It makes all of the difference!

Post Edited By Moderator (Lynnwood) : 2/2/2015 3:38:38 PM (GMT-7)


Ashaline
Regular Member


Date Joined Oct 2014
Total Posts : 82
   Posted 2/2/2015 3:17 PM (GMT -6)   
I don't know why that little angry guy is at the top of my post. Anybody know how to fix this, or what happened??? Thanks!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/2/2015 4:40 PM (GMT -6)   
Ashaline,

I removed the angry little guy for you.

(If you edit your post, you'll see a bunch of icons at the top. Somehow you had the little guy selected, I just unselected him for you.)
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/2/2015 4:54 PM (GMT -6)   
Yes, it triggers lupus flares.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

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

Hailie
New Member


Date Joined Jan 2015
Total Posts : 18
   Posted 2/2/2015 4:57 PM (GMT -6)   
ashaline! thank you for shedding some light for me and knowing your living a good life gives me strength. its such an adjustment faze...its like i have to learn who i am again, look at career changes and delay some things in life. getting comfortable with excepting all of this has proven difficult. i'm getting there...feels nice to talk to others in my shoes.
:)!! thank you
SLE Lupus, fibromyalgia
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