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newly diagnosed fibro and also have lupus and linear schleraderma..questions??

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Fibromyalgia
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Posted 7/26/2011 11:17 PM (GMT 0)

I have been diagnosed with linear schleraderma for 19 years (facial only) and lupus for 6 years. Today, my doctor is pretty sure I also have Fibromyalgia!! I am getting an MRI Thursday to rule out MS and ALS as well. Does anyone else have shortness of breath and slurred speech (thick tongue) when exposed to heat? I am scared to death and so tired of feeling this way. I have bad muscle pain in the bottom of my legs, thighs, inner knees, shoulders, back and hips. I can't stand very long w/out getting shaky legs and having to sit down. I have numbness and tingling in my lower arm and right toes. Please tell me Lyrica, if approved by my insurance, will help all this!!!! Thank you for sharing any thoughts!  

Posted 7/27/2011 2:11 AM (GMT 0)
Hi Jenny Lynn, welcome to the forum! I also have scleroderma and lupus as part of Mixed Connective Tissue Disease. I was diagnosed with fibro after my MCTD diagnosis.

I do get shortness of breath but I attribute that to pulmonary hypertension. The muscle pain you describe sounds like my fibro pain. Many of us get the tingling and numbness.

Fibro symptoms mimic a number of other conditions and diagnosis is not always easy. Checkout fibro 101 on the top of the page, you will find some great information, including...What else could it be?

I do not take Lyrica, I take Savella for fibro. We all tolerate these meds differantly...what helps one might not work for another.

I'm so glad you have joined us! You will find people to be friendly, caring and understanding. Post often :)

Hugs, Robin
Posted 7/27/2011 4:51 AM (GMT 0)
Hi Jenny Lynn~

And I'm glad you joined the Fibro Family. You sure have more than your share of health issues but it's not uncommon for those with fibro to have several other problems too. As far as Lyrica goes, there's no way anyone can tell you if it will work for you or not. From what I've read there is just over a 50% chance of getting some relief from Lyrica. One problem is it seems to become less effective at about 2 years out.

So then what? There are new medications to help fibro pain, either directly or indirectly, so you can switch to another one if Lyrica doesn't help. For me it did nothing but make me sick. I couldn't take it long enough to even find out. There are others who never have even one side effect. So give it a try and let us know how you do...OK?

Chutz
Posted 7/27/2011 3:59 PM (GMT 0)
Hi, Jenny, and welcome!  I'm so glad you found us and joined in.  Yes, you do have a lot going on healthwise but it is amazing what we can handle!  You face the problems head on and get help, keep a good attitude, and you will still have a good life ahead of you. 

 

I have bad back, shoulder, and neck pain.  Are you getting cramping at all in your legs?  If you are low in magnesium or calcium, you can have bad cramping.  I used to have that problem but, when I started on extra calcium, it all went away. 

 

Tingling in the toes and hands happen occasionally to me.  But, you are not through with  your tests and it sounds like your doctor is very thorough so that's wonderful.  You will get to the bottom of this and then help is on the way.  Meanwhile, try not to stress yourself.  I know that's easier said than done.  I'm working on that myself these days.  But it CAN be done.  Stress will just make your pain worse.  So calm down, trust your doctor because he is working for you, and you will get your answers soon and good meds to help you.  Let us know what you find out!

 

Be sure to check out Fibro 101...the second thread on the forum.  There are links to good information about fibro and you will learn a lot there.  Good starting links are Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  All of the links are very helpful so check it out!

 

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 7/27/2011 6:28 PM (GMT 0)
Thank you all for your kinds words. It is so nice to know their are others out there with the same health issues. Most people think I am a walking time bomb....I am sure you know the feeling well!! I did not sleep very well last night due to anxiety over my diagnosis. I am just ready to find out some real answers. I do have pain and cramping in the bottom of my legs very often. My Vit D is 36 so they put me on extra D...I will take a multi vitamin w/extra Calcium and see if that helps too. I am glad to hear others say they have shortness of breath. I am so glad I found you all...someone who understands!!! I get my MRI tomorrow so please pray it is clear! Thank you all so much!! wink
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