Im new on this board and looking for some advice! :)

Hello- My name is Jennifer, I am new to this site and looking for some advice on a medication I am about to start taking. A little background info... Im 28yrs old and kinda got diagnosed with fibromyalgia ( i say kinda just bc my doctor said that is what my symptoms are closest to matching) I was diagnosed with Lyme's disease almost a year ago. My symptoms were my fatigue and joint paint. After the treatment i was still experiencing pain specifically my knees and my wrists. So i started to see a Rhuemotologist. They ran some bloodwork, testing for auto-immune diseases and tested my vitamin levels. They found i had a vitamin D deficiency and negative on the autoimmune diseases. So after taking vitamin D on a daily basis and doing leg excercises, they rechecked my levels and they came back normal, still the pain was there. I noticed it started to become worse during stressful periods and i began to experience leg weakness/shakiness while walking downstairs. My joints /muscles hurt daily, some days are worse than others, although there is no swelling and they are not tender to the touch. Also my migraines have gotten worse. My doctor is still currently testing me for celliac disease and retesting for lyme's and lupus, etc. So previously he had me on Flexeril which i had to stop taking because of the emotional side effects. I am extremely sensitive to emotional side effects of medications! Now he wants me to start taking Neurontin....I haven't filled my prescription yet because taking an anti-depressant kinda terrifies me! I was wondering if anyone has been prescribed this and how their reactions were to this drug. Any information about any of my symptoms etc. or suggestions of what it could be would be extremely appreciated. Its been very frustrating not knowing what is wrong with me and it has been emotionally draining as well! Thank you and again I appreciate any info you an give! :)

Hi and welcome!! Neurontin is not an anti D rather it helps with the pain somewhat. Start at a low dose and work your way up. I had / have the shakey legs going down steps . Good Luck!!! Sounds like your neuro is on the right track

Hi Jennifer and welcome. I hope you get concrete answers soon. It is best to know what your fighting and sometimes it does take awhile to get all the testing done to rule out everything else it could be.

 

The thing with fibro is what meds work for one person may not work for another so there is a lot of trial and error when it comes to meds. I only took neurontin for a few days and didn't like the way it made me feel but that is just me, it works great for some. It would be nice if there was one med that works for everyone with fibro and maybe someday there will be.

 

You will learn a lot about fibro on this forum and the tricks of the trade when it comes to coping with it.

 

luv and hugs

Marlee

Hi, Jennifer, and welcome!  I'm so glad you joined our family!  I don't take Neurontin but there are quite a few members that use that med so I'm sure they will pop on and tell you about it.

 

I hope you keep moving.  If you sit or lay too much you will be stiff as a board.  That might be what is playing into your leg problems.  I know my legs feel weak at times, too.  I walk daily and that does help and it give me more energy, too.

 

Karen directed you to Fibro 101.  There is a lot of great information there and you will learn a lot.  You just might see yourself there.

 

It's really difficult when you don't really know what you are dealing with.  I sure hope they figure out what is going on so that you can start to move forward.  Keep asking questions, though.  We are here to help you...even if you don't have fibro. 

 

I'm happy that you are here and I hope to hear more from you soon.

 

Sherrine

Everyone- I just want to say thank you for the info, advice, and kind words! This has been a very difficult time for me and this forum is great. It is really nice to know that there are people out there going through the same thing and that can offer support :) I will definitely check out the Fibro 101 and I plan on getting my script filled by the end of the weekend, so I'll let you all know how it goes. Again thank you i feel so much better knowing that there is a place i can go for advice and support when need be! :)
Jennifer

Hi Jennifer!

I just wanted to add my welcome also. I tried neurontin and it made me feel awful and didn't do a thing for my pain. But that's how this disorder and medications go. The only way you will know is to try. Let us know how you are doing when you start taking it. There's a good chance if you have side effects that someone on here has had them too.

Warm hugs,
Chutz

Jennifer,

Welcome to the forum! I just restarted Neurontin 2 weeks ago and I am also very sensitive to meds. My doctor wanted me to start at 300mg at night before bed. I still had some 100mg capsules, so I started at 200mg for a week and then went up to 300mg. It helps me sleep, but I have weird dreams - better than tossing and turning all night I guess.

I have found that taking it at bedtime leaves me groggy in the morning and I do better if I take it a few hours before bed. I didn't see where you said what dose you were starting with, it is always best to start any med slow! I wonder why your doctor said it would help with fatigue - I think that is a big side effect at least at first.

Good luck and let us know how you do on it!