Carolyn has a question.....

[Carolyn, Director]

My question is ---- why aren't more of you asking questions? Especially questions about fibromyalgia? And actually you could ask questions about lupus here too! Or maybe even arthritis, or MS, or CFS? I am so surprised that more of you are not posting questions.

When I was diagnosed with lupus I had so many questions...the most pressing one was: Why did it take almost 20 years to get the diagnosis, especially if they traced my lupus back to when I was 18. And it may have been clear back to when I was only 8. I had polio, a moderate case that put me in bed for 3 months, may have triggered a lupus gene into action.

My lupus was extremely active and often severe in the 1990's and that's when they added in the fibromyalgia diagnosis. I learned that fibro would kill me like lupus possibly could, but fibro could be so very painful, somedays you wish it would!

I bet you have questions too but maybe you haven't done any posting on a forum like this before (there are several forums out there in cyber space that work just like this one). It's simple, truly it is. Just ask me....I was scared to death of doing something new on the computer but here I am. The trusty ol' webmaster just walked and talked me through it all and now I can even go into the administration panel and create things like this place right here.

You can REPLY to any posting on here...at the bottom of each there is a place to click on to POST REPLY...a screen pops up and YOU type. If you want to complain, ask a question, get angry, or just talk....look for POST A NEW TOPIC. Click on it, a screen will pop up and you start typing. Now you do have a subject line and you can type anything in it you want, but you do have to put something there. You can click on the Smilies at the side ------->>>>> over there and you can add them to your typing to show what you are truly feeling.

And I am not alone on here....believe it or not, we have a Registered Nurse - Julia and one of those great computer geeks as our webmaster - Pat....who each deal with an illness and each are willing to share with you. So....ask away and if we don't know the answer we'll do our darndest to find it for you and we will always give you support. We need support to and we want to know that we aren't alone on here

C'mon....TALK to ME or Julia or Pat We really do care.

[justamar]

Hello, I'm new to the group and like some of you I have Lupus and Fibromyalgia. Both are more active of late and to top it off, I have a stress fracture in my foot! At the end of the day, I have so much pain from the fibro I find it very hard to do anything once I get home from work (full time job). What medications do you find work the best? I'm seeing my rheumatologist on Friday and am considering Cymbalta. Right now, I take 600 mg a day of neurontin for fibro. I have tried Lyrica but it knocked me out and caused me to gain weight. I am very interested in your thoughts.

Judy

[Carolyn, Director]

Hi Judy........Welcome to the group. I have both SLE & FM but am one of the lucky ones that my lupus has been in remission for the past 5 years, although I know it can pop back up at any time. I too, am on Neurontin for the fibro and it also helps me with the neuropathy in my legs & feet. I am 400mg capsules and taking them twice a day right now, but have taken as many as 6 a day when dealing with higher levels of pain. Lyrica and Cymbalta are the new hot meds for fibro and both have pros and cons that go with them. In fact I recently read an article that believes that they were pushed thru the DEA too quickly so the pharmacuetical companies could get them on the market as they knew any med listed for Fibro would be a money maker. If that's true it can taint those drugs. Lyrica has some bad side effects not the least being dizziness and blurred vision.

I don't know anyone taking Cymbalta right now but the side effects listed on their on website includes:
•Nausea -- occurring in up to 38 percent of people
•Drowsiness -- in up to 21 percent
•Dizziness -- in up to 17 percent
•Constipation -- in up to 15 percent
•Dry mouth -- in up to 15 percent (see Cymbalta and Dry Mouth)
•Headaches -- in up to 15 percent
•Diarrhea -- in up to 13 percent
•Insomnia -- in up to 13 percent (see Cymbalta and Insomnia)
•A decreased sex drive (libido) -- in up to 7 percent (see Sexual Side Effects of Cymbalta)
•Coughing -- in up to 6 percent.

I hope that helps to give you a heads up anyway. And don't overlook the fact that you can increase the Neurontin . Before the new drugs came out we got along pretty good with a low dose of anti-depressant, something for pain and often a sleep aid...I like Ambien, but not everyone does. The problem is we are all different and are not often able to take the same meds.

Do keep in touch and let us know how you are doing.

[justamar]

Thank you. I may just try increasing the Neurontin; at least I know the side effects are not extreme. The doctor told me I could take up to 1200mg a day.

I'll keep you posted and am glad your Lupus is in remission!

Judy

[Carolyn, Director]

One thing with the Neurontin is that it doesn't build up in your system for a long period of time and that's a good thing, letting you take the higher dosage. It would be nice if your doctor gave you a large enough prescription that you could adjust the dosage according to your pain level....makes it nice for you to be able to raise it on those weeks when you have over done and then gradually lower it when you have good weeks.

I find that works great for me.

[Webmaster]

I just wanted to pop in here and say..... Hello Judy. Welcome to the forums. I am the traveling web Geek. I live in TN but currently I am in OK and soon to be in southern Cali. If you have any questions please ask. I am sure mom will get you an answer one way or another. LOL
Once again welcome and keep them post a coming. Just remember you can post just about anything.

[JuliaRN]

Hi Judy
I'm Julia the resident RN with mutlple autoimmune disorders.. with a new one to add as of 09-09-2009 Bell's Palsy. Besides pain meds, I'm now having to re-add Neurontin to my list of meds.

I'm available for any questions...