Fibromyalgia Thread

[brighteyes]

Yes I swell up with the heat ,fatigue and flares.I tried the flat belly diet and the sassy water was good for this but kind of a pain to make so I haven't been making it consistantly.

Toocheri how is your geutton free diet going? Has it helped with the water retenton?

Ireland nicole doent the eliptical hurt your hips? Mine hurt just thinking about it.lol

I will post the sassy water recipe next time I'm on my computer. Its easier to post plus I have to find recipe. May be a few days before I'm back on.
Pain free vibes and pixie dust to all!

I almost bought the flat belly diet book. Are you on the flat bellydiet? Does it work? I already drink a TON of water a day, usually 8-10 glasses day. I am already on my 6th glass and it's only 1:00. I do not go anywhere without my water.

My big thing that I cannot live without is my xlarge coffee a day. Only problem I have two large sugars and cream in that cofee.

I am on water retention pills. And the amitryptyline makes me sooo thirsty but the water pill makes me pee all day. lol

 

[brighteyes]

I just found this thread and am so glad I did!!

I have fibromyalgia also. It's been five years now and it took me a long time to accept the reality of it. When I finally did I realized that I could not do some of the things that I have always done, BUT there was still plenty of things that I could still do. I try very hard to just concentrate on that. Like all of you I have been to doctors, specialists, etc. and have tried different things. With me it's worse in the cold and when the weather changes. I get migraines too, although the hormonal ones stopped after I went through menopause. My migraines usually are related to weather and sometimes stress (which my doctor tells me to avoid, HA HA). I am not on any pain killers for the fibro, except exedrin migraine which helps. I also have high blood pressure and am on pills for that. I try to walk and exercise and that helps. I am constantly telling myself to keep putting one foot in front of the other and I have been able to do it, but know that a lot of people aren't as lucky as I am.

I loved reading everyone stories and hope and pray that all of you are well and get better and better every day. It really helps to know that you are not alone. Thanks for this thread. I will use my Disney ending...

Enjoy The Magic!!

Welcome to the boards, we are all learning so much from each other. When no one else can relate to what we are going through, it is helpful to know there are others here to talk to.

It is true that you have to keep walking. My mother suffers from horrible migraines. I used to have hormonal migraines though not as bad. I found once I went on the depo for b.c. that it took my migraines away. Before that for 15 years I LIVED on ADVIL migraine. Now, no more migraines. I should have went on this years ago.

I think many of us suffer from high blood pressure. Mine has been creeping up for about 4 years now. About the time I started having my first FM symptoms.

The nurse where I used to work said that if you are in pain, it will raise your bp! On the days I am in a lot of pain, my bp skyrockets. I think FM and BP go hand in hand. Losing weight didn't help, quitting smoking didn't help, and they were at a loss as to why it didn't come down.

Wishing everyone a great weekend and pain free days

 

[DisneyMim]

Thank you so much for the warm welcome brighteyes. You know, you got me thinking. My high blood pressure started around the time my fibro started! Yes I had put it together in the past, but after reading your post it makes so much sense now. I also think that taking so much pain stuff hasn't helped either. When I was first diagnosed with firbo I was talking to someone who said it was strange that my firbo started right around the time that my husband was diagnosed with cancer. Coincidence? Maybe, but who knows.

Anyway, I hope everyone has a wonderful Labor Day Week-end. And a pain free week-end. Wishing I was still in WDW. I got back 8/25 and miss it already!!

Enjoy The Magic!!

 

[brighteyes]

Ohh I am so jealous!! Hope you had a wonderful trip!

Well so many meds to can quicken your pulse. This summer one of my docs who was checking my blood pressure and not happy noticed my pulse has been quite high for some time. So on went all the cardiac tests, etc.

Turns out my heart is healthy, it's just all my meds make the pulse speed up. It's just such a pain - all the meds and all the tests.

But I am finally decluttering my roon, one paper at a time.

 

[tiggspring]

A beautiful week here in PA! Yeaterday I had my first truly good day in a long time. Did a lot of running around and found a new dinning room table that we have need for several years at 80% off. Cant beat a day when you feel good and save money!
Brighteyes yes the flat belly diet did work somewhat for me even when the sleep thing was still going on. I also had minimal success with the fat flush diet. I could lose about 10-20 lbs on these which ment I yo-yo’d. when ever I crashed I gained 20. Dieted lost 20 which is frustarating as you know. That being said , these are the only diets that have helped me lose any weight. That was before I found the melatonin diet LOL! Basicly the olther two are low carb, no caffenine, no sugar diets. I seem to be very sensitive to carbs and since this eliminated about 95% breakfast foods I find it hard to stick them. I like the Flat belly diet because it includes what she calls mufa’s which includes things like nuts and chocolate with every meal. If I can eat chocolate it’s a good day.

Here is the recipie for Sassy water :
2 liters of H2O
1 tea fresh grated ginger root
1 medium cucumber peeled and thinly sliced 1 med lemon thinly sliced
12 mint leaves
I tend to put all the ingredients in a gallon of water instead of 2 quarts and let it steep longer. I use mint tea in place of the fresh since it can be hard to find fresh in good condition.

Nice to see you Disneymim

I've got a menapuse question for you. I'm perimenapusal and have never had PMS of any kind. In the last year I have noticed that the time of my cycle that many woman complain of PMS my Fibro is flaring more. especially the intestinal issues. DId this happen to you or is this another one of my personal fibro tricks?

 

[Indiana Rose Lee]

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!

 

[Indiana Rose Lee]

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!

 

[brighteyes]

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.

 

[Indiana Rose Lee]

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.

 

[DisneyMim]

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!!

 

[brighteyes]

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.

 

[RNMOM]

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.

 

[cosine4]

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.

 

[Indiana Rose Lee]

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!

 

[brighteyes]

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.

 

[toocherie]

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!

 

[Indiana Rose Lee]

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.

 

[LauraAnn630]

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.

 

[Indiana Rose Lee]

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.

 

[cosine4]

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.