so today my doctor told me i have fibromyalgia. i know a little about it, but am researching, researching, researching. reading on the various websites just makes me wanna cry. its like everything fits. i am not crazy!

does anyone else have fibromyalgia? any suggestions for reading? or for things that help?

she (the doctor) put me on a new medication just approved for it in january, savella. anyone else on this medication?

any feedback is greatly appreciated. thanks!

I have never been formally diagnosed with it, but I have all the symptoms. Massage seems to help me more than anything. Exercise helps too. I have a lot of fatigue. I have never tried any medications for it, but I used to work in a doctor's office and we had a lot of patients that were on lyrica for it.

I've not formally been diagnosed either, but from what I've read, I think it's very possible. May I ask what kinds of symptoms you have?

Terri

Hello, I do not have fibromyalgia but I was recently, in May, diagnosed with MS. I was the same way, I knew nothing about the disease and researched it like mad and cried and learned that I had been suffering from it a lot longer than I had known. What made it even tougher for me was my husband leaving me only months earlier, which caused stress and lead to my episodes. I feel like I have to face it on my own. Actually the main reason I have decided to get the band is because I was diagnosed and I think it will help with the episodes in the future. Good luck to you and I am sorry for your diagnosis. You have to stay as positive as possible and find support in your friends and family. Best wishes to you

Hi Tam.

I was banded in Oct, and like you, I have MS. I know there are some things unique to us, and was wondering if I could email you

Terri

Hi, everyone. I've been out of town so it was great to see this thread is still going.

I moved about a year and a half ago and am still searching for a doc who is comfortable working with my current meds. (I take 20 mgs of hydrocodone a day.) The first one I tried put me on Savella with my current meds. Three days later I had the shakes. It turns out you cannot take Zoloft with Savella. I stopped the Savella and haven't tried it again. I have an appt with a pain doc on Tues. I"m keeping my fingers crossed. The first doc is good for most things...just not fibromyalgia. Anyway, maybe a pain doc is what I need.

Take care. I will let you know how it goes.

I've not formally been diagnosed either, but from what I've read, I think it's very possible. May I ask what kinds of symptoms you have?

Terri

I have a lot of fatigue mostly. I get tired very easily. I also have an extreme amount of pain in my neck, shoulders, back, knees, just about every where. Sometimes massage works, but sometimes it makes it worse. Heat helps a lot. I find that when I don't get enough sleep, the pain is worse, especially in my neck and shoulders. I have never tried any medications, and to be honest, I don't go to the doctor for it, because I am afraid they won't do anything for me anyway. I guess I am afraid they will tell me it's all in my head.

I have had it for 15 years. I am 11 months out on band. the major factor I have noticed was getting off sugar- my symptoms were reduced by 90 %. Over the holidays, I got back into sugar and have been flaring ever since.

Dancingbutterfly, I can't imagine having fibro for 15 yrs and not going to a doc for help. I've had it for avout 13 yrs. I think fibro is now accepted as a disease. However, I do have friends and relatives who do not like to go to a doctor. It's just an individual preference.

I went to a pain doc for the first time. I've been trying to find a new doc to help with my fibro since moving one and a half years ago. This is my first time to use a pain doc. He said fibro is muscles spasoming constantly. I haven't heard about that theory. I guess that's why muscle relaxers and massage helps. Anyway, two new perscriptions and I have to go back every month for my hydrocodone perscriptions. I can live with that.

Take care everyone.

Tina

I used to work in a pain management practice. I think fibromyalgia gets a bad rap because so many people use it as an excuse to not work and get disability. And a lot of people fake it just to get drugs. I have to admit that I saw it many times. These people make it hard for people like us to get help who do have real pain. I guess that's why I am reluctant to go to the doctor about it.

Dancingbutterfly, I can't imagine having fibro for 15 yrs and not going to a doc for help. I've had it for avout 13 yrs. I think fibro is now accepted as a disease. However, I do have friends and relatives who do not like to go to a doctor. It's just an individual preference.

I went to a pain doc for the first time. I've been trying to find a new doc to help with my fibro since moving one and a half years ago. This is my first time to use a pain doc. He said fibro is muscles spasoming constantly. I haven't heard about that theory. I guess that's why muscle relaxers and massage helps. Anyway, two new perscriptions and I have to go back every month for my hydrocodone perscriptions. I can live with that.

Take care everyone.

Tina

This is my fifth day on Savella. I have been a little nauseated, and my heart rate a little high, but my pain is subsiding. I slept all night , and when I woke up this morning only my hands ached. Yay! My doctor wrote me a script for 100mg a day . I am sensitive to meds so I went on line and got info on starting it. I started taking 12.5mg twice a day....now I am taking 25mg twice a day and next week I will go to 100mg. Heck, I may not need that much. Time will tell. Props for all of you that have endured this problem for so many years. I think I would have gone nuts.

I was taking Flexeril when the pain was bad. I can't take hydrocodone . I took it after my last abdominal surgery(not banding) and got a bowel obstruction. It tends to slow everthing down on me.

Take care! I really appreciate your pain now that I have it too. I have friends with Fibro , but I should have been more sympathetic. I will from now on.

I picked up my two new perscriptions today. One is Robaxin, a muscle relaxer which does not cause drowsiness. I'm rather excited about it. I'm suposed to take it morning and afternoon with the rest of my meds. In the past if I was having an awful day all I could do was take my other meds early, which often left me in trouble in the evening. I've tried one today and it seems to help. I'll let you know how it is long term.

Tina

Taz, that's great. The Savella is working for me except now my pulse is between 80-90. I called the pharmacist today and she said it was a side effect and may go away. She said to call the doctor. I guess I will do that tomorrow, but I don't want to quit taking it because this was a pain free ....IBS free day and there is a cold front moving in......suppose to be in the teen's and twenties for days.

I have been on Savella for almost 10 days. I got up to 50mg a day and my pulse was so high while my bp was very low. So, I cut back to 25mg and the pain has subsided . Also, my pulse is almost normal and my bp is just a little low. I hope I can keep taking this stuff because it is so nice not to hurt. We have very cold weather here....24 in the morning and 45 in the afternoon. It starts raining on Tuesday so that should be a test to see if the Savella helps the IBS. I get IBS when the weather changes. I think the reason people get sick on Savella is they start off taking too much. I also read that it cause a bad reaction when mixed with a SSRI.

I have a lot of fatigue mostly. I get tired very easily. I also have an extreme amount of pain in my neck, shoulders, back, knees, just about every where. Sometimes massage works, but sometimes it makes it worse. Heat helps a lot. I find that when I don't get enough sleep, the pain is worse, especially in my neck and shoulders. I have never tried any medications, and to be honest, I don't go to the doctor for it, because I am afraid they won't do anything for me anyway. I guess I am afraid they will tell me it's all in my head.

My back and knees are where I have the most pain. But like you, I'm afraid the doc will say it's all in my head. I'm going to have to have knee replacement surgery in a few months though, so am hoping I feel alot better after that.

My knees hurt too, but not as much as they used to.

Charlene K, I am so glad Savella is working so well for you. I hope it continues long term. I tried Savella for 3 days and got the shakes because I take Zoloft as well. Have you noticed any reduction of anxiety or depression?(if you have that challenge) I would be afraid of going off my Zoloft otherwise.

My new muscle relaxer seems to help. Like you, I'm hoping the effects don't wear off.

Hang in there everyone.

Tina

Charlene K, I am so glad Savella is working so well for you. I hope it continues long term. I tried Savella for 3 days and got the shakes because I take Zoloft as well. Have you noticed any reduction of anxiety or depression?(if you have that challenge) I would be afraid of going off my Zoloft otherwise.

My new muscle relaxer seems to help. Like you, I'm hoping the effects don't wear off.

Hang in there everyone.

Tina

I guess I must have been depressed because I do feel so much better....the pain was getting to me. I have read a lot on Savella and you are not supposed to take it with Zoloft or many SSRI's because of the serotonin. I guess if you do it really can cause major side effects. I still have low bp, but my pulse has gone down. I think maybe I need to get off of my bp medicine. I still need to go in and talk to the dr. I just can't believe how much better I feel. Now, the weather is going to change on Wednesday and I will know if it takes care of the IBS. I was taking muscle relaxers before this med. They help too. Glad your's is working for you. Everyone needs to seek out the best solution for their pain.

Take Care!