Have any of you ever heard of kefier grains? if you have than you should totally try a smoothie made with

1 cup frozen mango
1 banana
3 tbsp ground hemp {hemp powder} {protein source}
2 tsp bee pollen {local source}
16 oz of keifer, cultured for 24 hrs, then grains removed & and let sit in the jar, at room temp for another 24 hrs,, {increases the vitamin B & vitamin B6, as well as acidopholis{ vitaminB’s and acidopholis are a key component needed in fibros}, other friendly bacteria& yeasts. Anyways, I NEVER used to have ANY good days at all. But than I started drinking kefier smoothies for breakfast & lunch, just 3 days a week to start, and in the meantime, I had a few REALLY good days, could not figure out why, but than I figured out it was the days that I had the kefier!!! so go to dom”s kefier website for more information,,and how to find someone on there to mail you some grains free, but he has the most extensive website on kefier,,,,,, please for yourselves, and to spread the word, please try it!!! and good luck

Sorry fibrohaven, I did not know where else to put this,, I hope it helps everyone

gentle hugs kasha

I am a network administrator, so I need my brain to work correctly. My current Rxs allow me to do just that.

Now for the bad part. At first I had several bad side effects. It was actually because I was mixing the OTC allergy med Claritin with the others. I had audible and visual hallucinations, but as soon as I dropped Claritin, it went away.

I have gained weight (I am 6′ and weigh 172), I drop things constantly, and I am beyond cranky. Whatever pops into my mind comes out of my mouth… (usually not too good things)

With a little understanding from friends and family, along with not picking up any family heirlooms, I am managing just fine.

After being on HEAVY narcotics for years, any side effects are well worth being nearly pain free most days. Today is an exception. I have been diagnosed for over 11 years and this mix is by far the best I have been on.

Thanks Chris for sharing about your “special recipe.” You definitely sound like the traditional Type A personality that FM seems to search out and try to destroy. You have a lot going on and I am very glad you found the right combination of meds. It seems like for most people who benefit from prescription drugs there is some sort of trade off – cranky moods, weight gain, etc., but if they improve the quality of your life then I imagine they are worth it. That is all most of us with FM are trying to do, improve the quality of our day to day life. Keep up your sense of humor. I have found that to be one of my best coping mechanisms, the ability to laugh at myself. FH

I have been taking Lyrica for about three years. I take 300mg a day. I also take a few other meds as well. Iknow the Lyrica works for me because I have tried to be off Lyrica twice now. I have accepted that I must take this medication even with side effects. The main side effect for me was weight gain. I have probably gained 20 extra pounds on Lyrica, luckily I am still at a “healthy” weight according to my BMI, but it does get me down because I feel overweight in comparison to my earlier years in life. I cannot participate in my life when I am not on this medication. So , the trade-off is worth it.

It is not a wonder drug, but it does help.
Susan

Thanks Susan. I have read repeatedly that it causes weight gain, but if it allows you to participate in your life, 20 extra pounds is a good trade-off. Thanks for the info and for taking the time to respond to Craig. FH

Thanks Kasha! I really appreciate your feedback and encouragement. It helps a lot on days when feel like I am just babbling. Thanks also for your comments to Craig. FH

I will say that I am very lucky, as I have deffinatly not experienced any of the negative side effecys from lyrica, nothing but positive side effects, and I know that it does work for me , because a few times I have missed doses, and I notice pretty quickly, as my nerve pain returns with vengance, I think the trick is to start out on a very low dose, I started with 1 x 35 mg/day, for the first week, than, and since than I have been on 3 x 35 mg /day, as well as 75 mg x 1/day of venlafaxine, {antidepressant that provides anelgisic pain relief, and tramacet when needed for pain, which on bad days 2 at 8am, than 2 at like 1 pm, seems to really get me through the day, so this is what I have been taking for a while now , and it seems to be a great combinatrion for me,

I also had a horrific injury, I was crushed by a cow at the dairy farm I was working at, and even after 6 months of therapy {massage & light physio} my symptoms from the injury were not subsiding,,, my doctor at one point threw his arms up in the air, after every MRI, x-ray, you can imagine, with no results. WCB finally sent me to a pain managment specialist, and through the tender point examination, I FINALLY new what the heck was wrong with me.

After the diagnosis my GP has been amazing, since I was prepared to find a different doc, cause he seemed at first to have that attitude, like fibro is not a real disease, and phycological,

so I went into the next visit, prepared, and with a more assertive attitude than I usually carry, which kind of reversed the power position . I came in, sat down, and before he could say anything, I said “well DR. P, I will be honest with you”, ” I have the feeling ,that you have a varried opinion about this disease, I want to let you know, that if you are not prepared to acknowledge, and treat this diagnoses, of fibromyalgia, as my acting general practitioner {because they do work for us, we pay their salaries} , “than I am fully prepared today to go and find another doctor whom will treat me with respect, and do the best they can, to help me get back to my daily activity level, having a vested interest in me as their patient”.

Well, seriously, you should have seen his face LOL, I really don’t think that he thought this weak, pain filled girl that he had been treating had that kind of gumption in her!!

However it has been the BEST thing I could have done!!
we have gone from him thinking that it was all in my head, to the last visit I had with him, he said “Well , kasha, you now have the most knowledgable doctor in the valley, as far as fibromyalgia is concerned”, he had been working at home in his private family time, studying, and finding any new research or as much information, as he can on fibro!!

I feel so lucky, now, that I decided to talk to him first, instead of leave, and I feel like I have the best doctor in the world!

So , to all of you FMily out there, be open honest, and assertive, {not bitchy, but assertive} with your doctors, and help them to help you as much as you can, and you will hopefully end up as lucky as me!

Oh!! and as well, he refused since my injury to give me pain killers, {this left me pretty much disabled}, because after 6 months he thought that the injury should be healed,, but after the diagnoses, I went into his office, with some, very powerful research done on fibro patients, and pain killers,, the research showed that only 2 people out of 570 patients with fibro became addicted {not dpendant,, this is a very different thing which speaks of the bodies dependancy on the drug, which always happens}, when compared to 570 non chronic pain, or fibro patients, but people whom carried on usage, after whiplash, or other injuries, 117 patients became addicited, so as you can see the #’s speak for themselves,,,,,

ANYHOW, as I was saying I took this info in prepared for battle with him, as it usually was, in the past when asking for pain killers, and him wanting to prescribe me some stomach killing anti-inflammitory,,, but I was amazed {this was my next visit after the confrentation visit},, he said “oh kasha of course I’ll give you somthing for the pain, I feel bad that you have suffered this long, but you have to understand that a lot of other possibilities, have to be ruled out before a fibro diagnosis is defined”. So that is when he started me on the lyrica, venlafaxine, and the tramacet for pain,, and I am a happy camper today, I can get throught these draining days of physio, and stretching and exersise,,

Which I gotta tell you that STRECHING has really improved my symptoms!!!! you should all try some very!! gentle stretching everyday, and see if it helps you

Anyways I have written a novel here,,,sorry about that, but I tend to write a lot when I get all excited about somthing, and want to share with others,,,, well take care everyone, and if you want, I am on facebook too, my name is kasha marie ferguson csik, if you want to look me up, but I will be back if anyone has any ?’s

Take care ,,, gentle hugs to all kasha

Kasha I am so happy that you forced your doctor to become knowledgeable about Fibromyalgia. Good for him for being open minded enough to listen to you, but even for better for you for making sure you were heard! Thanks for the novel. I enjoyed it! FH

I am so happy for you that you are experiencing an improvement in your health and pain symptoms. It sounds like you went through a major ordeal. Personally I am hopeful that your improvement is because your body is healing and that it is permanent.

From the little I know about Lyrica, some people respond well to it and others have more side affects than relief from it. I know of a few people who are doing very well on it and swear by it. I also know of a few others who were doing well on it and after some time it stopped working for them.

Whatever you are doing to be able to wake up in the morning pain free – KEEP DOING IT! What a blessing! There are a lot of us that can sympathize with waking up and wondering what good could come of getting out of bed.

In my office I have written, “Today is a blessing, what are you going to do with it.” Some days I need the reminder more than others. Today you shared your story and have passed along a little hope to the rest of us. Thank you!

I hope someone else will respond who has more knowledge of Lyrica and can answer your questions firsthand. And I hope your health continues to improve.

For years I did censor myself. I would never do or say anything that I thought would make anyone else uncomfortable when it came to my health. This blog has really liberated me. I have become more accepting of my feelings and frustrations of living with a chronic illness.

I had to read your comment a few times. There is so much to absorb there. It is clear that you have been holding a lot in. You are pissed off and expressing it – GOOD FOR YOU!!! It makes me very happy that you felt comfortable enough to do that here.

I love what you said about Fibromyalgia rendering “vibrant, vital, active members of society completely disabled.” It is so true! I really believe that Type A personalities are more likely to end up with FM – people like you – a wife, mother, nurse, athlete and community volunteer. While some diseases do not discriminate, I believe FM chooses strong, active and giving people. I know I was and FM has taken it all away. I am working really hard on taking some back!

What do you do to cope Chris? Do you have a good support system? I have just recently started a local support group and so far we are all getting a lot out of it. Please feel free to come back and share whenever needed. All my best!