Newly Diagnosed, Seeking Guidance

Hello all. I've been reading posts for a little while, not sure if I wanted to post myself but I really do feel better knowing I'm not the only person dealing with such an irritating issue. I have spent the past few years being sent for every test imaginable (MRI with and without contrast, EEG, EKG, Xrays, blood work and more) and each time a result came back "normal" I'd feel like I was nuts. One moment it would be stomach pain, then chest pain, my eyes hurt, then things started tingling and going numb (hands, face, foot), then my foot swelled up for seemingly no reason (and still isn't completely right). The list seems to go on and on. I've been on Gabapentin for about three weeks now and, although it seems to help some, it hasn't taken away my pain 100% and I feel more tired than ever. I'm hoping things turn around soon and the fatigue fades a bit. All in all I think I'm coping well and it really does help to have a place like this to hear other's suggestions, struggles and thoughts. Hopefully one day none of us will have to deal with this and some sort of cure can be discovered (fingers crossed).

Hi, MynneMouse. Welcome! I'm glad you decided to post because yes, it really does help to have a place like this...we're all in this together.

Wouldn't that be wonderful - a cure for Fibromyalgia. At least now they are working on one, and more doctors take us seriously, though unfortunately, not all. Sounds like you've been through all the testing and being told you're normal when you know you're not, etc.

Have you read the first thread on the forum, "Fibro 101"? There's a lot of really good information in there. Hope to hear more from you soon.

Debbie

Thanks for the welcome. Yes, I've read the "101" post (several times actually, LOL). Yes, I do feel like the meds make me more tired that normal (always tired but it's a bit worse now). I also feel a bit out of it (can't really explain it), not sick or bad really but I do feel "odd" since beginning the Gab.

Hello!

I felt the same way when I starting taking Gabapentin. After a while, my energy came back and it DID help! I was just diagnosed this past Fall after being tested for everything under the sun too. Of course - everything was normal so I was finally diagnosed with Fibro. I have good days and not-so-days but I'm learning to cope! This board helps a lot!

I'm sorry you have had to join our club, it's not a fun club to join and I don't recommend it to anyone, but you are in good company.

Gabapentin can have that effect (drowsy/tiring). I was just told that I need to take more. I've been on 1200mg / day for the last 5 years, but lately I've been having major neuropathy in my hands and feet, so doc said to increase. He did tell me that if it does make me drowsy during the day that I can take more of it at night before bed and less in the morning, or take a dose after dinner time then more at bedtime. I've been taking 600 2x day, so I'm going to start off trying to do 900 2x/day and see how that does.

Hi, MynneMouse, and welcome! Ahhhh...it sure would be nice to be 100% pain-free but it hasn't happened for me yet and I've had fibro for decades. But I do have my pain under control so I can do a lot of what I want to do. I also find ways to work around fibro to do things, too.

I had the groin pain that went down my legs but it stopped at my calves. For me it was horrible. I almost couldn't lift my feet to take a step and I had to use two canes to walk. Because this and my back pain were getting progressively worse and since fibro isn't a progressive illness, I headed to my rheumatologist. It was discovered I now had ankylosing spondylitis and sacroiliitis along with my fibro. I was put back on ibuprofen with food and a muscle relaxer called Robaxin that has made a significant difference with all my pain and now I don't have that raw nerve pain. So do get checked out. Not everything is caused by fibro and you can get help.

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