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Posted 11/23/2011 5:43 PM (GMT 0)
Hello I am very new to this...

My story is that I have been in pain and fatique for quite a long time. We recently just had tons of trauma for the past two years and all of a sudden now I am in tons of pain and fatique...It started with my back, Shoulders and neck, then my legs, then my arms and my hands..I have many headaches and haven't been able to sleep right for YEARS...After a bunch of testing the doctor says she thinks I have Fibromyalgia but is not giving me a diagnosis, she is sending my to a Rhuemy at my request cause I do not trust her...I at first did not believe of this illness...I thought it was something doctors diagnosed you with just cause they couldn't figure it out. After tons of research I now BELIEVE...While I am waiting for the whole referral process (which takes forever) she gave me Gabepentin to take...Since I have been taking the med (2 1/2 weeks) I have had a couple nights that I slept better than I can ever remember and feel better the next day but the rest of the time it is like I took nothing at all...Any suggestions? Has this med worked for anyone else? What is it supposed to do to me?

Very frustrated and need some relief...

 

Posted 11/23/2011 6:23 PM (GMT 0)
Hi Kitten5502,

Welcome to the world of fibromyalgia. I think the most important things we fibromites can do is to learn as much as we can to help ourselves so we don't have to count so much on our doctors but don't get me wrong our doctors are still vitally important.

My endocronologist put me on gabapentin about a month ago for sleep and night sweats. My hormone levels had tested out fine so she wanted to try this med. The first night I took 1 capsule or 100 mg. and I felt I slept well enough. The next night I couldn't fall asleep with 1 so I took 2. The following night I had to take 3. But just to let you know I wasn't able to fall asleep any of these nights without taking the sleep supplements I've been on for years: Melatonin and L-Theanine. As we get older our bodies don't produce as much melatonin and they use to and we need melatonin to sleep. L-Theanine is suppose to help the mind relax, it seems to work with my mind and it also seems to relax my muscles. These combined most of the time give me that tired feeling that I don't get naturally any more. Something else that is very important for me to sleep is to not have sugar or caffiene at all.

Gabapentin, it didn't help the pain and I don't think it helped me sleep. There was a night I woke up at 1 a.m. and couldn't fall back asleep, the next night 3 a.m. I sleep like that normally with the supps, some nights more hours than others. The gabapentin caused me some side effects. One day, after three weeks of taking gabapentin I experienced something I never had before. A big time tremor in my upper leg that wouldn't go away and burning and pins and needles in my feet that didn't get better until I slowly weaned myself off this medication. No more, my rheumatologist had told me I am medication sensitive. She said most people with fibromyalgia are. Now that I'm off the gabapentin I haven't been experiencing that leg tremor or that burning and pins and needles sensation in my feet. The med was hard to get off of. Even with taking more of my sleeping supplements I couldn't sleep very well at all. It was especially hard for me to fall asleep as I tried to lessen my dosage.

Good luck to you. I hope gabapentin works well for you. We are all different.
Posted 11/23/2011 7:23 PM (GMT 0)
Hello almost medfree,

I have experienced the same thing, I get a good night sleep the first time I took it and then not and then again when I moved up to 2 and then not again and I start taking 3 next week...The doc that prescribed it is just a family med doc, I am curious to hear what the Rhuemy says cause he is really good. My 19 year old daughter see him for her RA...It has been so hard to get the referral going to see him it is very hard waiting. I hate that everyone thinks it is just nothing...My husband responds with "EVERYONE has aches and pains" and he has my oldest daughter thinking that too. It is very frustrating when you want to clean and get things done but can't seem to do it some days cause you feel like you have the worst flu ever that never ends...I have not drank caffeine for 10 years so I am pretty good there, just can not drift off to sleep for some reason...On most nights it is no particular one that I can even figure out, just can't do it...

It was weird at the time the doc was asking all my symptoms...I felt like a head case telling her ALL of these problems. I kept thinking to myself she is going to think I am insane to complain about all these aches and pains...It felt good to finally get it off of my chest but then again it was hard to describe. When she asked me if my muscles or my joints hurt, I thought about it and was very confused, cause they both do...Now after reading so many people's stories I realize it just seems to affect everything...She has been sending me to physical therapy for months upon months cause first my SI joints were going out (I only 40) and then now she says it is bursitis, but never did an xray on my hips what so ever...So I really need to get to this Rhuemy so I can get some decent care with someone who specializes in these sort of things.
Thank you for the reply I appreciate it sooo much...
Posted 11/23/2011 9:59 PM (GMT 0)
Hi Kitten,

Welcome to the fibromyalgia forum. I am so glad that you have joined us, but sorry for the reason why. I took neurontin for awhile, I didn't like it. I do hope your med works for you. Everybody is different. Medications react differeint with different people. As Amost Medfee had side effects, you may or may not have them. OR you may have something different.

One of the most important things is to try to stay active. Keep moving around. If you don't, your muscles go into a rigor state and become stiff. Walking is good and so is swimming. So if you can do one thing or both, go for it.

I hope that you stick around. Do let us know what the rheumy says. I hope that you are able to keep the pain and fatigue at bay. That is about the best we can do. You may always have pain, but you can get it to fade into the background. It really does work, with distractions.
If you get a chance, I think you would enjoy reading fibro101. It is the second thread on the forum. It is full of information that I think you will find useful.

Do keep posting. Know that we all care about eachother here.

Let us know how you are doing.

Hugs, Karen
Posted 11/24/2011 7:34 PM (GMT 0)
Welcome to the fibro forum. Find and read as much as you can on Fibromalgia. The more knowledge you have will make fibro a lot easier for you. I have had fibro for many years and have tried many drugs. You will find out the drugs and treatment works on each one of us different. A lot of us fibro patients are very senstivitive to meds including me. I hate starting new meds, just because of all the reactions I have had. I finally got a treatment plan that works for me. It's vitamin supplements, rest, light exercise, minimal stress, heat, and mental health therapy. I have a therapist that I can share those frustrating days to. It really makes a difference. I hope you can find a treatment plan that works for you. It takes time, so frustration is normal. Hope to see you around the site.
Posted 11/28/2011 9:55 PM (GMT 0)
Thank you all for the for the replies. Your help is MUCH appreciated. The meds are a very frustrating factor. Almost as frustrating as all of the pain and fatique my body is going thru. I finally got up to three of the gapapentin last night. Was extremely hard to fall asleep but once I did it was extremely hard to wake up. I was 2 hours late for work. Which is not helping my situation much cause work is already frustrated with me so much from missing and having so many doc apts. I called and left the doc a message cause it seems like I am really getting more angry and moody..I think it is the meds cause I am typically not an angry person. Plus it is not helping with the pain. People seem to treat me like it is "all in my head", which is extremely frustrating and ridiculous. It baffles me cause you would think they would pay closer attention to me and see that I am not the same as I use to be. They see the pain I am in yet still say it is all in my head. URG!!! I said no it is in my arms, legs, feet, hands, neck, shoulders, back, hips, shall I continue. My Rhuemy apt is set for March 16th, which is ridiculous but they are going to try and get me in sooner.
Thank you all for your help and advice. It is nice to have people to talk to .
Posted 11/28/2011 10:48 PM (GMT 0)
Welcome Kitten......I was dx with fibro in 2007, I was put on gabapentin and I still take it, I am not sure it helps for sleep as I take an antidepressant and pain meds. Having to take medication every day is not fun but it does help so you can have some quality of life....without it I would have a hard time getting out of bed, however I also suffer with chronic pain(nerve) fro 2 failed back surgeries. I think going to a Rhuemy will be great as they are much more knowledgable in Fibro.

I agree with Karen...keep moving even if you just go for a swim.(I do realize it is hard to get moving just try a little at a time. Keep us posted, I think you will forum very helpful as there are many members suffering with the same thing.

Take care, Amy

Chronic pain (nerve), fibro, and mild depression
Posted Yesterday 1:26 AM (GMT 0)
I just started Gabapentin. I triated from 100 mg for 5 days then 200 mg for 5 and now 300 mg until my next appt in January. I feel less pain already and am sleeping better. I hope this relief is permanent. I also am weaning down to 1 1/2 lortabs a day, which I take for fibro and other pain problems. I hope you do as well on Gabapentin as I'm doing so far. And, by the way, welcome to the Forum-this is a wonderful support group!
Posted Yesterday 2:22 AM (GMT 0)
sos007, I am very glad my doc agreed to send me to a Rhuemy, he is my daughters doctor and I trust him immensely..He is a wonderful doctor and is very caring. I can't wait to see him to see what he has to say. I believe I have some arthritis as well, as my hips keep going out of place and my doctor doesn't care enough to take xrays. she just assumes it is bursitis. Very strange to me. As far as the Gapapentin goes I have discovered some things over the past few days that are bothering me. I have been doing weird things lately...Not thinking straight, forgetting things like crazy, feeling blah and blank, like I don't have a brain in my head. I am definitely not myself. Last night I took the 3rd pill as they were moving me up slowly. I couldn't fall asleep til about 1 and then after that I slept so hard I didn't even wake up to go to the bathroom. When my alarm went off I couldn't even get out of bed, it was like I had lead in my body, like I couldn't even manage to muster enough strength to move at all. I called in to work and went in a couple hours late. This is getting very bad cause I have missed much work due to this and some female problems. So I called the doc and told them how tired the 3rd pill made me and they are taking me off of them and will want to try something new and the doctor will call me tomorrow. Wonder what they will try me on next. I read Lyrica has all the same side affects. If the doc mentions taking this, do I listen to her or wait until I see the Rhuemy, which is not until March. This crap has literally made me feel like I am crazy, especially in the past week, with little to no pain relief. Has anyone lost their job to this or had to quit working from being too tired and in too much pain cause I feel like I could just sit here and vegitate all day long.
Posted Yesterday 4:02 AM (GMT 0)
Re your hips going out of joint, I have trouble with my knees slipping out of joint & I have bouts of hip bursitis too. I found some stretches in an online search that helped a LOT. I absolutely know how excruciating that pain is.

Joint slippage can be due to connective tissue disorders, but it can be part of Fibromyalgia too. Yes, it is upsetting when there is so much weird stuff going on in your body at the same time. I try to always tell myself that although I feel awful, it's a chronic problem, but it's not a terminal disease. That always help get me through the bad times.
Posted Yesterday 4:18 AM (GMT 0)
Kitten, I am not a doctor but I would try whatever your doc comes up with, if it doesn't agree with you stop taking them. (with your rhuemy appointment being 3 months away) I do take gabapentin but what works for one does not always work for others. I think once you get to see your rhuemy you will get the much needed help you need as rhuemy have worked with alot of fibro patients.

As far as work goes I had to go on disability until I was well enough to go back, sometimes your job creates more stress an if you are not on the right meds this can be worse for fibro patients.....stress is very hard on fibro.

Keep in touch and let me know how you are doing...I care

Take care, Amy

Chronic pain(nerve), fibro and mild depression turn
Posted Yesterday 3:25 PM (GMT 0)
applevenus, I am just surprised that the doctor hasn't checked into my hips more. She has never xrayed them or given me a shot or anything except she just keeps sending me to physical therapy. When I go to physical therapy and get worked on, then the next day it goes to my other hip. It alternates hips every other day. Very strange. I try to tell myself that everyday that it is not a terminal disease and I am Thankful for that. I just need to get some things under control.
sos007, I will definitly listen to my doc, even though I do not like her right now she still knows more than me. I can't wait to see the rhuemy. I have been thinking about being taken off work for awhile cause work is extremely stressful right now and my concentration level is minimal and I think my work is suffering because of all this. Thank you all for your help I appreciate it very much. It definately helps. Thank you so much for caring.

Thanks Much
Posted Yesterday 8:35 PM (GMT 0)
Hi, Kitten, and welcome!  I'm glad you found us and joined in.  You have gotten good advice from our members, as usual.  We do have a great group here, don't we!

 

It's very important to have a good rapport with your doctor and you also need the trust, too.  I'm glad you are seeing the rheumy that you do trust.  They will be able to help you without your questioning things.  That will be far easier on you, too.

 

I do a few alternative things to help with pain and fatigue.  I've had some bad reactions to some medications so I do try to avoid them as much as I possibly can.  I use malic acid/magnesium supplements and vitamin D3 supplements to help with my pain and fatigue.  This has helped some on this forum.  Unfortunately, what works for one doesn't necessarily work for another.  You just have to try things until you find what helps you control the pain.  I didn't say "pain-free" because I don't think that's possible.  But, once you get in control of the pain, you will do far better and be far happier.  I've had a full and enjoyable life in spite of this illness and you will learn how to, also.

 

You do need to keep moving with fibro.  If you sit or lay too long, you will be stiff as a board and have more pain.  I do some gentle stretching exercises and I also do a daily gentle exercise.  I walk or swim as my exercise.  Yoga is another good gentle exercise for fibro.  I also pace myself.  Things get done but in a different time frame.  As you learn to live with fibro, you will get better at pacing yourself.  I've learned how to work around fibro to do what I want to do. 

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  There are links about the vitamin and nutrients that I mentioned above and the gentle stretching exercises are here too. 

 

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

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