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

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New Member

Date Joined Apr 2010
Total Posts : 6
   Posted 4/1/2010 10:44 PM (GMT -7)   
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! :)

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 4/2/2010 5:25 AM (GMT -7)   
Good Morning n welcome to
i have fibro and know there are ppl here on that med
im sure they will come along soon n give you some input
i sure can relate to frustration and pain you are dealing with
i do think you might want to give the neurontin a try and see if it helps
i know the lyrica has helped me out with my pain
yes fibro is draining emotionally n physically but you have come to a place where ppl do really understand n know where you are coming from
plz keep posting n dont give up
life is good even with this DD

..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

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Veteran Member

Date Joined Mar 2010
Total Posts : 1286
   Posted 4/2/2010 5:28 AM (GMT -7)   
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
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR),  disc problems in neck, depression, anxiety & stress
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day, soma, fioronal, tramadol, zoloft.
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 41844
   Posted 4/2/2010 6:06 AM (GMT -7)   
Hi Jennifer,

WElcome to HealingWell. I am so happy that you have joined us.

Neurontin is for nerve pain mostly. Which helps with the fibromyalgia. I couldn't take it because on a high dose it made me stutter. But that doesn't happen to everyone. I took the flexeril too. But switched to Soma. It doesn't make you as sleepy as the flexeril does.

If you get a chance, check out the thread called fibro101. It is the second thread on the forum. I think you will find it very imforative.

I hope that you have a good day today. Free of pain. Keep posting and know that we are all here for you.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 4/2/2010 6:27 AM (GMT -7)   
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
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
Vit D/calcium

Veteran Member

Date Joined May 2008
Total Posts : 704
   Posted 4/2/2010 9:30 AM (GMT -7)   
Hi Jennifer,
I take Neurotin, I had to work my way up in the dosage because it made me sleepy at first. I take 3 300 mgs at night. Does't really make me sleepy anymore, but I think it does help with the pain. I too have (or had...however you want to look at it) Lyme and the nerve pain is ouchy, esp in the thigh area. I'm lucky in that I usually don't have too many side effects of meds so I'm ok with it.
Welcome to the boards.
Taking it one day at a time.... 

Forum Moderator

Date Joined Apr 2005
Total Posts : 17501
   Posted 4/2/2010 12:23 PM (GMT -7)   
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.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Regular Member

Date Joined Jan 2010
Total Posts : 78
   Posted 4/2/2010 1:44 PM (GMT -7)   
turn blush Hi Jennifer and welcome to our forum! I take Gabapentin (generic Neurotin). I started out with 3-300 mg/day. My dr upped the dose to 600 mg/4xday. I feel better (pain level 2-3) than I have for months. I also take Savella 50 mg/2xday. He also rxd Amitriptyline 75 mg/1 at bedtime. I have RSD. It is a lot like fibromyalgia and the drs seem to prescribe the same meds for each condition. I hope that helps you some. All of us seem to have different experiences with the drugs. I hope you have great results! take care. Donna eyes turn yeah yeah

New Member

Date Joined Apr 2010
Total Posts : 6
   Posted 4/2/2010 10:16 PM (GMT -7)   
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! :)

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 41844
   Posted 4/3/2010 11:53 AM (GMT -7)   
Hi again Jennifer,

I am glad that you have found us. And I am glad that you are staying. Keep moving as much as you can. As Sherrine says, if you don't, you will be stiff as a board. And that is true. Fibromyalgia seems to want you to be stuck in one place, and it makes everything so difficult. But know that you aren't alone with this. We all got through the same thing as far as pain and fatigue. Fatigue is what bothers me the most. I can live with some pain. Though I am never painfree.

I hope that you are having a great weekend. Keep posting and let us know how you are doing.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 4/3/2010 9:59 PM (GMT -7)   
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,
Gravitation is not responsible for people falling in love.
Albert Einstein

(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

New Member

Date Joined Apr 2010
Total Posts : 6
   Posted 4/3/2010 10:11 PM (GMT -7)   
Karen- Thank you again! Yes movement def helps but yr right the fatigue is awful! My doc said the medication should help the fatigue as well so we shall see. I will def let everyone know how the meds work out. I hope yr having a great weekend as well! Happy Easter :)

Chutz- Thank you for the welcome. I am nervous about the medicine. I tend to be sensitive to medications but i will try anything if it helps! I'm sorry it mad ya feel awful. Are you taking anything right now for yr symptoms? I will def keep everyone updated. Thanks again I hope you are having a great weekend. Happy Easter! :)


Regular Member

Date Joined May 2009
Total Posts : 241
   Posted 4/4/2010 1:53 PM (GMT -7)   

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!
Fibro dx 2004, RLS, raynauds
Ultracet, Robaxin, Neurontin, Lidoderm patch, Vit D, CoQ10, Mag

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