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Old 09-06-2009, 10:20 AM   #106
Indiana Rose Lee
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Hi! Do you all mind another newbie? I was diagnosed 20 years ago, and have had my ups and downs! I, too, have migraines, weather, and hormonal primarily. My pain isn't so bad now that I am on both Lyrica and Savella. Still adjusting to the Savella, and having nausea and insomnia off and on. But, in general, my attitude towards life has greatly improved. Over the years I've tried every anti depressant out there, to try to help with sleeping, and mild SAD. This one is changing my life, though.

I haven't read back to see if there is a purpose to Sassy Water, but it sounds really yummy! I have an abundance of mint, too. I need to get it picked and dried this weekend.

Looking forward to getting to know you all, and will go back and finish reading the thread!
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Old 09-06-2009, 10:53 AM   #107
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[QUOTE=brighteyes;33281877]
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Originally Posted by tiggspring View Post
Hi everyone. I finially made it back. This last week has been one of those weeks that I just couldn't think so waited to post. My name is Bonnie and I have had Fibro for 15 years. My official diagnosis in FMS, CFIDS, Chronic Toxoplasmosis and complicated migraines but I have a lot of bizarre symptoms and my disease acts a lot like MS with good and bad days and symptoms taking turns as to which will be worse day to day or month to month.

Hi tigg,

Just a thought because I have a friend with MS. have you had an MRI to rule out MS? My friend tells me often that some of my symptoms mimic hers.

She has also told me to up my vitamin D levels to really high. I can't remember how high but she said her doc does research on MS and other similar diseases and found that high levels of vit D can slow or sometimes halt the progression of autoimmune diseases. I don't think fibro is autoimmune? or is it? I can't remember??

Take care, I hope everyone has a relatively pain free day.
oh my! Do not up your vitamin D too high! I did that once. I started having horrific pain in my legs, and cramps. I eventually found our that vit D decreases the mangnesium level (or makes it hard to absorb) and that not only cause my leg pain, but also death!

eta: Hope you don't mind me saying something about this!
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Old 09-06-2009, 03:43 PM   #108
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[QUOTE=Indiana Rose Lee;33465631]
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oh my! Do not up your vitamin D too high! I did that once. I started having horrific pain in my legs, and cramps. I eventually found our that vit D decreases the mangnesium level (or makes it hard to absorb) and that not only cause my leg pain, but also death!

eta: Hope you don't mind me saying something about this!
Not at all! I take calcium with magnesium with vit d3 and take an extra unit of vit d3. The pharmacist said we only need about 1200 units of vit d3 a day.

But that seems to conflict with your comment about vit d3 and magnesium. I wonder why then, the two are combined in one vitamin.

I have not read the research on the vit d3 reversing autoimmune disorders but the pharmacist did say something about it.

I would not recommend anyone just take something based on my comment, I always check with my dr or pharmacists before taking any vitamins.

Hope everyone has a good weekend.
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Old 09-06-2009, 03:45 PM   #109
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Actually it makes sense. Your cal/mag keeps you from having the problems I had! I'm glad. I was so miserable and for awhile we had no clue what was causing it.
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Old 09-06-2009, 07:48 PM   #110
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tiggspring, I first started having fibro problems right around the time I started menopause. I didn't have too much premenopause stuff. I have had migraines since my pregnancy with my son (and I tell him he is still giving me headaches, he just turned 21!!). Every month for years I had really really bad migraines that sometimes lasted for 6 days. It was horrible. Meds helped at times, but not always. Anyway, when I hit around 51 (I am 56 now) I started having menopause symptoms that lasted about a year. Then it just stopped. At the exact same time my fibro started. My migraines changed at that time too. I don't get any from hormonal stuff, but when the weather changes or I am stressed or tired or the migraine villian just decides I'm getting one they happen. Sorry for going on and on, but I'm trying to see if any of this will help you. I can see that maybe your fibro pain would get worse monthly, just like a hormonal migraine. Problem is fibro is such a wierd thing. It can come on for various reasons, getting worse at different times of the month, year, etc. I live in NE and the cold really bothers me, for example. What I do think and again it is from my own personal experience, is that once you go through menopause a lot of women stop having hormonal migraines. Maybe everything is all tied in together.

Just a real quick thing on vitamin D. All I know is that when I am out in the sun I feel better. The last time I went to the doctor he tested me for vitamin D and said I was fine. I also have heard that too much is not good for you, but you need some.

Hope at least some of this helps. Hope everyone is having a good week-end and you are all pain free!!
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Old 09-06-2009, 11:46 PM   #111
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Just a real quick thing on vitamin D. All I know is that when I am out in the sun I feel better. The last time I went to the doctor he tested me for vitamin D and said I was fine. I also have heard that too much is not good for you, but you need some.

Hope at least some of this helps. Hope everyone is having a good week-end and you are all pain free!!

See, that is precisely why I think I should live at DisneyWorld. I still had a bit of a crash there due to my calf muscles but I was still at Disney. The cold bothers me A LOT, I hate it, hate it. I crash bad in the winter.

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Old 09-08-2009, 07:29 PM   #112
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Hi all! I have actually been feeling better the past couple days.

I just wanted to jump in here and comment about the vitamin D comments.

Vitamins A,D,E and K are all fat soluable vitamins. They're slower to be eliminated by the body and can get you in trouble much faster than the other vitamins which are water soluable and can be excreted in the urine much more quickly. This is all assuming your kidneys function normally. I just want to comment that any vitamin or mineral taken in excess can actually be very harmful and even deadly so please just speak with your MD before you begin taking anything more than a basic multi-vitamin suppliment.

I used to be very good about taking my vitamins but am lax these days. I don't have any good reason but I take so much other medicine as it is but I just popped my multivitamin as I type this.
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Old 09-09-2009, 09:58 AM   #113
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Hello all,
I am new to this thread but not new to the Dis. I have recently been diagnosed with fibromyalgia, but have been dealing with the symptoms for years. The past couple of years I have gotten significantly worse. I used to live for playing ice hockey, roller coasters lots of out door activities but just got to the point where I couldn't do it anymore. I suspected that I had it based on conversations with my mom who also has it and having similar problems.

I just started taking Savella but have not gotten up to the full dose yet. It isn't covered at all by my insurance (because they obviously know more than my doctor does). Has anyone had any success with this medicine? What about other non-fibro meds other than pain killers (which is the only thing that currently gets me through the week).

Right now my relief comes from massages, stretching and ice/heat.
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Old 09-09-2009, 11:37 AM   #114
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Hello all,
I am new to this thread but not new to the Dis. I have recently been diagnosed with fibromyalgia, but have been dealing with the symptoms for years. The past couple of years I have gotten significantly worse. I used to live for playing ice hockey, roller coasters lots of out door activities but just got to the point where I couldn't do it anymore. I suspected that I had it based on conversations with my mom who also has it and having similar problems.

I just started taking Savella but have not gotten up to the full dose yet. It isn't covered at all by my insurance (because they obviously know more than my doctor does). Has anyone had any success with this medicine? What about other non-fibro meds other than pain killers (which is the only thing that currently gets me through the week).

Right now my relief comes from massages, stretching and ice/heat.

I would cry if I had to go off Savella. It has made my life so much better. The pain is better, and my outlook has improved tenfold. I went from an achy half empty kind of gal to a zipadeedoodah half full kind of gal. I haven't given up Lyrica, but the combo is allowing me to do so much more than I've done in years. That said, about once a week still (7 weeks into it) I still have some wicked nausea. It is still worth it, though, imo.

Try contacting the makers to see if you can get it discounted or free. Most companies have some such program.

I hope you find relief and a discount!
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Old 09-09-2009, 09:11 PM   #115
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Hello all,
I am new to this thread but not new to the Dis. I have recently been diagnosed with fibromyalgia, but have been dealing with the symptoms for years. The past couple of years I have gotten significantly worse. I used to live for playing ice hockey, roller coasters lots of out door activities but just got to the point where I couldn't do it anymore. I suspected that I had it based on conversations with my mom who also has it and having similar problems.

I just started taking Savella but have not gotten up to the full dose yet. It isn't covered at all by my insurance (because they obviously know more than my doctor does). Has anyone had any success with this medicine? What about other non-fibro meds other than pain killers (which is the only thing that currently gets me through the week).

Right now my relief comes from massages, stretching and ice/heat.
Hi, and welcome. This thread has been active lately. Regarding non-fibro meds, I take amitriptilyne (sp?). (I also take Lyrica). I thought this summer it wasn't working as well as it used to, and was told it was responsible for weight gain, so I decided to go off of it. Never again, I was in so much pain, much more than I ever was before I even went on it. So I guess it was working.

Ami is actually an anti-depressant in larger doses. But in smaller doses is used for the pain of fibro and helps with sleep. I currently take 30 mgs nightly. Hope that helps.
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Old 09-09-2009, 11:12 PM   #116
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I would cry if I had to go off Savella.
Hi ladies--sorry I haven't been around much lately, but have been engaged elsewhere.

I am going to have to check into Savella--haven't heard of it before.

And Indiana Rose Lee--welcome!
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Old 09-10-2009, 06:28 AM   #117
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Hi ladies--sorry I haven't been around much lately, but have been engaged elsewhere.

I am going to have to check into Savella--haven't heard of it before.

And Indiana Rose Lee--welcome!
Thank you for the welcome! I'm excited to find this thread and group!

Savella is new, but when I saw my doc yesterday for a med follow up he said that the reviews that he has had for it are similar to mine. It is an antidepressant that affects the norepinephrine levels rather than seratonin levels. That said, insomnia can be an issue. I've dealt with it just a bit more than usual.
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Old 09-10-2009, 08:11 AM   #118
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This is crazy. I went to the Cleveland Clinic. My doctor there said he is not prescribing Lyrica because all of his patients on it gained weight and said it wasnt helping them. He never mentioned Savella.

I was really really hoping a Cleveland Clinic doctor would help me! I went in and told the doctor how terrible I felt and it was so bad at times it was effecting the quality of my life.

I was diagnosed with fibro years ago and not one single doctor has done anything to help me. They tell me to take long hot baths.

I have been lucky over the summer but winter is approching and Im worried the fibro and sarcoidosis will stop me dead in my tracks again.
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Old 09-10-2009, 08:35 AM   #119
Indiana Rose Lee
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I was diagnosed at the Cleveland Clinic also. They tried me on the first antidepressant to sleep that didn't work.

I did gaind weight on Lyrica. When I take it I want to snack more than real life. I just keep my snacking options limited to avoid weight gain, now. Plus, the Savella has helped that. A mild nausea keeps me from eating.

eta: I sound like I'm advertising the stuff. Not. I am usually antimed and think the pharmaceutical companies are evil.
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Old 09-10-2009, 08:38 AM   #120
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Hi, and welcome. This thread has been active lately. Regarding non-fibro meds, I take amitriptilyne (sp?). (I also take Lyrica). I thought this summer it wasn't working as well as it used to, and was told it was responsible for weight gain, so I decided to go off of it. Never again, I was in so much pain, much more than I ever was before I even went on it. So I guess it was working.

Ami is actually an anti-depressant in larger doses. But in smaller doses is used for the pain of fibro and helps with sleep. I currently take 30 mgs nightly. Hope that helps.
I tried amitriptilyne as well as nortriptilyne (not sure if they work similar or just sound similar ) and both made me so tired that I couldn't function and didn't help with pain noticeably.

I saw the weight gain info on Lyrica and am cautious about trying it because I am down 70 lbs from a couple years ago and still have to work hard to keep it off.
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