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Posted 7/25/2012 11:37 PM (GMT 0)
I have Systemic Lupus and I've just been told I also have fibromyalgia today.

smhair   smhair smhair smhair smhair smhair

Feeling a little overwhelmed right now...........

Posted 7/26/2012 12:00 AM (GMT 0)
Sorry to hear this....But from your other posts and what you have been dealing with already...it's really not going to be much different than what you are doing now to take care of yourself.

If you aren't on any type of muscle relaxer...that would be the one addition that is very helpful for Fibro pain. Or a nerve pain medication like Lyrica, Neurontin, or Cymbalta...

That is if your symptoms warrant any of these as some people aren't on any medications...

The big key is to not let a diagnose "define" you. I have so many physical issues going on right now as well it can seem overwhelming. From a pituitary tumor, a Morton's neuroma in my foot (second one), to neck pain from 3 previous cervical fusions and 4 other herniations going on. To knee pain, and oh yeah....4 cracked teeth that need root canals!

Just to say that many of us with Fibro have a lot of other things going on too.

Not sure if you have seen it yet..but there is a sticky post titled Fibro 101 that gives you plenty of information as well as many things that you can do on your own to help manage your symptoms..

Eating well, maintaining a healthy weight, not smoking, daily exercise, yoga/stretching, aqua therapy, massage, acupuncture, ice, heat, counseling to name some things that help Fibro as well as just good for our health overall and any of our conditions.

It's important to keep moving with Fibro so if that is not something that your other Drs. have mentioned...it really helps us not be stiff and sore.

I have to say for me that using a sleep aid (I use Ambien but there are others and non prescription things to try first) , along with eating all Organic has made a HUGE impact on my fatigue and energy levels which in turn help me manage the pain easier. Getting to stage 4 sleep is when our immune system repairs itself and this is something my particular Rheumy believes is crucial in helping with Fibro symptoms.

Along with walking my dog every day (45 minutes)...even on nights when I don't feel like it...it always is better afterwards as it releases endorphins and makes me happy to see my dog's tail wagging! LOL

And the last key is not napping throughout the day (once in awhile is ok) but this along with the exercise helps us get a better night's sleep.

Anyway...these are all thoughts/suggestions...I know it's a hard thing to hear when the Drs. add on one more diagnosis....so it's ok to let it bum you out for a bit...but then get back on that horse (bike? LOL) and just take each day as it comes and do the very best you can to live the best possible life with Fibro.

Sending you hugs (( ))
Posted 7/26/2012 12:47 AM (GMT 0)
Joy,

This is Desiree. I am also in the Lupus group, however, for a different autoimmune disease. The treatment is the same though, and there is no group here for Wegener's.

How are you feeling hon? I hope you continue to post here, as well as in the Lupus.

I'm sorry that you have more trouble than your norm. However, you must slow down hon. With fibro, the trick is to not overdo it, however, it is much harder than it sounds. You have to keep moving, even when it hurts, just real slow and easy. Exercise helps me, I do pool therapy when I start a flare. The human body weighs less when submerged in water, and there of makes it easier to move.

Feel free to vent, ask questions, so much more hon. Just like we do in lupus!
Posted 7/26/2012 1:59 AM (GMT 0)
Couch tater - I am sorry to hear about your diagnoses. I wouldn't want anybody to get fibro. The good news is that your on this site. It has really made a difference in my health. I was able to learn how to manage fibro and receive support. Your doing great by reaching out.
Posted 7/26/2012 12:38 PM (GMT 0)
Hi, Couchtater, and welcome!  I'm sorry to hear that you have fibro too.  Try not to feel too overwhelmed though.  Many of fibro's symptoms are just like lupus symptoms so you might not notice that big of a difference. 

 

Be sure to read Fibro 101...the first thread on the forum.  You will learn a lot about fibro there.  Good starting links for you would be Symptoms and A Thorough Explanation of Fibromyalgia.  You will see many of your lupus symptoms there, I bet. 

 

I've had fibro for 25+ years and have had a full and enjoyable life in spite of this illness.  There are ways to work around the illness to do pretty much what you want to do.  I refuse to let illnesses stop me from living my life and it's worked for me!  Also, a positive attitude has helped me as much as any medication I could take.  There is a link in Fibro 101 about maintaining a positive attitude.  It is very good.

 

I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium and vitamin D3 supplements and an alternative pain product called Curamin to help with pain and fatigue.  I do take one prescription medication...a muscle relaxer...called Robaxin that has helped me a lot.  There are links about the supplements in Fibro 101, by the way.

 

I also walk daily, to gentle stretching exercises and pace myself when doing things.  It all gets done but in a different time frame.  All of the above has helped me live a very good life in spite of fibro. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

 

Sherrine

Posted 7/26/2012 2:08 PM (GMT 0)
Hi there 'tater! I have had fibro for nearly 17 years but I was only recently diagnosed. I insisted I didn't have it and my rheumy insisted I did! lol His insistence proved me wrong after having the tender point test done - I think there was only one point that didn't hurt.

But I have a whole slew of health issues so to me, having fibro is/was not the end of the world. Sure there are days that I feel like I'm 80 years old but those are the days I just pamper myself. So take the time to pamper yourself on those bad days and come back here to vent or if you need a "shoulder" to cry on - these lovely ladies are awesome! :)
Posted 7/26/2012 4:05 PM (GMT 0)
Thanks guys, I'm just feeling like my body is slowly falling apart.

Thanks to lupus I'm limited to the amount sun exposure I can have.
I take a mega dose of perscription vitamin D already (100,00 IU). The paxil I started recently seems to be calming the constant pain.

I'm trying to file for private disability right now. I don't feel like I'm able to work enough to make enough money to survive.

Doctor called me today and told me I've got a major protein spill in my urine so now let's add kidney problems now to my growing list.

smhair  

Posted 7/28/2012 2:28 AM (GMT 0)
Joy don't we all feel the same :p

Huggsss sweety
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