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    TGIF*****4/25/2014 *****Roll Call *****
    dollbug posted:
    TGIF*****yes, I am glad that it is finally Friday...don't know exactly why but I do look forward to Fridays... MiMi in NC where it is cloudy and the rain is expected today. I hope it is just for today and that tomorrow will be a better day. The weather people keep changing the forecast so I am not sure they even know what it is going to do. Perhaps the rain will help get rid of some pollen. I am having major issues with my eyes. I tried the (new( Mucinex Allergy but it has been no help to me at all so I guess I am going to be forced to go back to the Allegra D (expensive also) whether I like it or not. And for the life of me I do not know why one works and the other don't.

    I kept my GS yesterday and he took 2 little *cat naps*....the last 20 minutes or so that I was there with him, before his mommy got home, nothing pleased him. I think he was just both tired and hungry. Sleep makes a HUGE difference for him. My DIL called me later in the afternoon and told me he had slept over 3 hours after his lunch. Yep, sleep is important for everyone. He woke up in such a good mood.....all resting up and ready to play.

    Here is hoping each of you had a good night's rest....and I hope today will be a good day for us all with little to no FM pain to deal with. I hope you will have sunshine to enjoy and I sure hope it will be here tomorrow as well for NC.

    Welcome to the new members who have joined our support group recently. I am sure that each of you will soon find something that will help you cope better. Everything dealing with FM is a process which does take time and effort. Learn all you can about what others have found that has made a difference in how they you never know what just might also help you as well.

    Vitamin D. Be sure and check with your doctor about getting your Vitamin D level checked. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well. Do your own research on Vitamin I am sure you will find some good information on the internet about what the medical researchers have discovered about it.

    That's my story and I'm sticking to it. Have a good Friday and remember to pace, pace and pace even more.


    rudyandirmouse responded:
    Good Friday to all. I hope today will be a good one for each of you and that you will not have to deal with fibro issues or pain.

    It's over cast here this a.m. and the rain that came late last night was a gully washer. Strong winds and lots of thunder and lighting as well. Took a look around this a.m. but not damage that I could see from it's passing. Whew on that one.
    Sorry the rain that went through here may go your way but it if it has as much rain in it when it goes through your area it will settle down the pollen.

    Also sorry that your allergies, eyes, are bothering you so much. I haven't used the Mucinex for my allergies this season, but my DD has and says it has helped her. I know that Allegra has helped me. I hope that your have some relief quickly.

    DH and I ran errands yesterday and afterwards we got things done around the yard. It's nice to be able to be out of doors working in the yard and with the plants. We bought watermelon and cantaloupe plants along with a few tomato plants. We are going to make the boxes up off the deck this year so the squirrels or rabbits aren't able to get at them if they work their way over or under the fence. All the fruit trees had flowers this year so we're hopeful for some peaches, apples and cherries. The birds or squirrels usually get to them before we can but this year we've got our fingers crossed. I have begun putting the coffee grounds around the strawberry plants to keep the snails or slugs away this year.

    Not a lot to do today. Two medical appointments, both for the neck and shoulders. I really wish I didn't have the neck or shoulder issues but the FM has damaged the nerve endings there so badly over time that I am guessing that these types of appointments, neck traction and adjustments will be part of my life for pretty much for years.

    Lou, hope that you have been able to more time to get the things you need done and that you have found places near by so you can relocate easily.

    Okay, not a lot to post about, slow news day. Wishing those of you here a good day with sunshine and warm temps.

    Gentle hugs, Linda R
    katmandulou responded:

    Warm here, 60s and sunny. They're predicting rain Sat, Sun, and Wed. I'll have my hair cut and touched up *LOL* Saturday, and see Mom.

    The kitchen is starting to move. I'll spend my "extra" time packing up stuff I want to keep, and the demolition starts Mon. We're checking into a local hotel Sun afternoon, but will sleep at the house that night. Mon, the pooch goes to board, DH goes to work, and I can land at the hotel. Two days of demo, then one day to remove the floor, and we'll be back Thurs, but no kitchen. We'll have the toaster oven and microwave, and there's always takeout. The thing is: portions are SO huge in restaurants these days, they'll feed me 2 or 3 times. We also bought a mini-fridge, so we can keep lunchmeat, milk and a ice cube or two. LOL

    Heaven only knows when I'll meet with whomever the insurance company will pay to rebuild, but I'm trying to keep my "eye in the prize " (as a friend says) - the NEW kitchen. Light wood cabinets, medium bamboo floor, and an extra couple cabinets for storage (which we'll pay for). Pace myself, pace myself"026

    I hate that the US Congress decided to make the good decongestants "over the counter/behind the counter" products. I stopped taking them when they demanded a photo ID. Yet one can still buy cigarettes without a problem! I was glad to see that CVS/pharmacy will stop selling tobacco products. You shouldn't seek health in the back of the store when you're selling disease and death in the front!! Ok, sorry, I'm off my soapbox.

    I volunteered to work at my local state rep's event for senior citizens. So many need some sort of help, but just don't know where to go. She brought 100 agencies, from Councils on Aging and police departments to nursing homes and financial planners and others, in one place. Add a light lunch and a fashion show, plus great raffle prizes, and it was a very good day. I'M the one who's tired!

    I'm off to decide whether to keep expired cake mix or toss it. LOL I wish you all the best day - and the best weekend - you can possibly have. I'll come back soon,
    fibroinsd responded:
    afternoon...hope you all are well..

    Talk about weird weather ....I finally have an afternoon I could sit outside and read peacefully, and it is just too cold...the wind is not good AND...they are calling for rain, thunderstorms...and even snow in the hills...that is just plain ol crazy !

    So tired, but I do have things that need to get done..stuff like laundry, cleaning, bills to much to do..

    but I think I will go curl up and take a nap !

    Let's put the fun back in dysfunctional !- Mary Englebright
    franr replied to katmandulou's response:
    Hi Lou

    I had to chime in on the kitchen construction. I went through this a few years ago and had foot surgery at the same time.Our Victorian is big so we never had to move out but it is not an easy thing.Try not too stress too much during this time period as you know this will make the fibro worse. If you get a crock pot you can make soups and stews.Also see if you can borrow a 2 burner stove top..Grilling is also a good option. Going out does get tiring after a few weeks.Also expecting rain in the Boston area this weekend and then the creeping pain begins. Have a good weekend....Fran
    sebastian_16 responded:
    Hi Mimi,

    My name is Scott and I just joined WebMD. I live in the Dayton, Ohio area and recently met a gal I'm just crazy about who was diagnosed with FM nearly 2 years ago. Her name is Jennifer, and I don't believe she's a member here, but like many I suspect, she gave up researching online for answers/cures for FM long ago after realizing there weren't any cures, per se. Anyhow, because I wanted to understand the disease better and also check to see what the latest was that people who suffer from FM were finding that helped I came across a few things that seem to help some, I've shared a few things with her that I've found. Specifically, Myofasical Release massage treatment, an antihistamine called Ketotifen that shows promising relief for some (Indiana University Associate Professor Dennis Ang), and of course Vitamin D. I feel that I know you somewhat Mimi since I've read many of your comments here, however, I thought when I first stumbled upon WebMD and you, I could've sworn that you ran some type of sub-forum (for lack of better term) where you addressed various things you have found success with regarding not just Vitamin D, but also other supplements/minerals/foods that you have found have helped you. She also suffers from the chronic fatigue aspect that you do, and I've told here that you are still dealing with the fatigue side of things, but that is the least of her concerns, as I suspect you would agree that pain management is most important too. Makes sense to me at least. Anyways, I have a couple questions for you. First, since Jennifer won't be seeing her doctor that treats her for FM for another 2 months, I had asked her if she had her Vitamin D levels checked by her doc ever and she said she did long ago. She recalls it was low but in the acceptable range, but I've read that just because you might be in the 'acceptable' range, i.e., 30's, getting that number up into the 60's has proven to be very helpful according to some docs who treat patients with FM. See this article: . Anyhow, I told her she may want to consider taking 5000 I.U. a day just to see if it helps thinking it can't likely hurt. I'm curious what you think since you seem to emphasize a lot about the importance of getting Vitamin D levels checked and working closely with your doctor regarding this. Can taking 5000 I.U. of Vitamin D supplement really pose a potential problem? If so, what sort of risks could she be looking at by this much Vitamin D supplement before discussing or coordinating with her doc? Although it's been awhile (year or so) since she had her levels checked, it was in the low acceptable range at the time and I don't see much risk myself. Am I overlooking something? I would think that if she left a message with her doc expressing interest in taking that 5000 I.U. quantity now and then having levels checked for Vitamin D at her next appointment this could save time. Unfortunately, I don't currently know what all she is prescribed but could've sworn she said Ambien is at least one, but I'm starting to doubt that because I don't see that listed and I thought Ambien was to help folks sleep, which wouldn't make sense to me since she also has the chronic fatigue thing as you've said you have as well. Anyhow, I do know that she gets a lot of pain in her legs/knees as well as hands and must say she is NOT a complainer/whiner so it's not always easy for me to get info from her, but I push for it anyways Finally, I realize you (or anyone) wouldn't want to advise one way or the other for risk of something happening, but I do value your thoughts on her immediately starting to take 5000 I.U. of Vitamin D supplement before getting her doc's approval. I personally can't see how it could be harmful myself. Am I possibly overlooking something? Again, your thoughts on this are much appreciated. Thank you for all you do here, Scott
    dollbug replied to sebastian_16's response:
    Hello Scott and welcome. MiMi in NC. Thanks for providing the link. I read it and also read some of the comments on it. As was indicated from other people, Vitamin D can be a factor in a lot of issues, as you probably already know. We are all different and what helps one person may or may not help someone else.

    I do know though that I have learned how to *control my FM pain* by taking vitamins and supplements and doing other things as well. Am I pain free? No and I do not expect to be...but I can tell you that my pain is so much better now than when I first got sick. I also have other health issues as well.

    From the research that I have done though, there are still some doctors who do NOT understand Vitamin D and there are some doctors who still do NOT believe that FM is an illness. So, with this being said, I hope you friend has a good doctor that is treating her.

    I know that Dr. P who was here for a while lives in Ohio. although I don't remember exactly where. He was a great asset to our support can find his discussions listed under *tips* or *resources* and he provided us with a lot of good info.

    Now going back to Vitamin D. I know that in the beginning when I first got sick, my doctor did some tests on me and found out that my Vitamin D was 12 or 14. He finally prescribed the 50,000 iu dose for me but I took it just a very short time. He did tell me that I would need to take Vitamin D OTC for the rest of my life. He is NOT one of the doctors who think it is a good idea to keep tabs on it. (don't know why)....but anyway....after I did my own research on it....and found out exactly how important it is I increased my own level to 4000 iu a day. I have been on this for some time. It took me a long time to get my level back to just within the low range. I do think a lot of people have issues with absorption.

    So, with this being said, I take the following vitamins and supplements: Fibro Response and Magnesium Malate (found at vitamin store) I take the source naturals brand. I also take a P5P (vitamin store) which prevents my lower back from hurting, a good multi vitamin with extra D and Omegas. This is what I have found that has helped my FM pain. I also take a joint supplement since I have problems with knees and hips and wrists.

    I wish I could say that I have found something that has helped my chronic fatigue.....but I can't....but I am still trying to find something. I think that there is indeed something out there I just need to figure out what it might be.

    I also use a heating pad, Stopain Spray (good stuff) and drink lots of water....every day. I try to watch what I eat and I do gentle stretches and/or exercises as well. (gentle being the important word here). I will also tell you that I have to sleep in a recliner using pillows, to avoid extra pain.

    I think that you are a good person trying to help your friend. I hope Jennifer knows this. Most people do NOT understand just how mean and ugly this illness can be.

    I hope you will tell her about this support group and encourage her to join. I also hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well. I am sure she will find some good *tools* that perhaps she has not thought of or tried. It does take a trial and error process to find the *right combination* that will make a difference for us FMers.

    I hope both of you will continue to do your research about I am sure that learning more about it will certainly improve her daily journey with dealing the with wrath of the dragon, aka FM.

    Take care.


    fibroinsd responded:
    Hi glad you are doing so much research for Jennifer..and that you understand so well. I also had mildly low vit. d...but not enough for the doctors to do anything about I started out with just 1000 units extra and then added another 1000 units ..taking one in the morning and one at night..I have read somewhere that too much can cause problems..not I don't remember where I read that I do think going slowly and making sure she doesn't have a bad reaction is a good idea..

    HOWEVER, I did want to mention that for me, one of the best things I did, was to take a B-100 COMPLETE. It is a little more expensive (about $13 per bottle)...but it has been what I needed to get more energy..and also to keep my blood sugars from going up and down too much. I hope this is helpful to Jennifer...

    Let's put the fun back in dysfunctional !- Mary Englebright
    sebastian_16 replied to dollbug's response:
    Hi MiMi & CeCe, thanks so much for such a prompt reply! You are both very thoughtful, compassionate & I feel lucky to you're here! Your comments are very helpful, and I've passed many of them on to Jennifer already. She doesn't really talk to me much about how she's feeling, just things like I'm having a bad morning or sorry I didn't get back to you sooner (texting) my hands and legs were hurting me so bad yesterday, things like this are rare though. She may have someone else she talks to about her pain, but I'm not one of them so I rarely know how she's doing & I'm fairly certain she suffers to a certain extent each and every day. Plus she'll take naps and say I don't know what happened or why I'm so exhausted all the time, I hardly did anything, but sometimes she says she'll crash soon after taking her meds, again, which I'm not really sure what she's taking and don't want to pry in that area either. I'm hopeful she will join up here soon, but not sure if/when she will. As I mentioned before, she had researched many different things about FM earlier on after being diagnosed with FM nearly 2 years ago, but became discouraged when she discovered there really wasn't any cure yet for FM.

    I know someone who suffered from Endomitriosis for years and always hoped she was wrong when she said long ago that she felt there wasn't nearly the amount of effort going into research of Endo as there was for prostate cancer citing that it's still such a man's world. It was estimated in 2012 that 6-10% of women of child bearing age were afflicted with Endo, or approx 5 million, whereas 1 in 7 men will get prostate cancer with 1 in 36 will die from it. About 2.5 million men are currently alive who've had prostate cancer and survived, with approx 233,000 new cases estimated for 2014. Since FM afflicts mostly women (75-90%) and according to the NFA, it's estimated that approx 10 million women have the condition in the U.S., and 3-6% of all women throughout the world. However, the incidence of occurrence rises dramatically such that by the age of 80, approx 8% of all women will be impacted by FM!

    I don't currently know how much effort/research is going into FM compared with prostate cancer, & I could see that one might argue that prostate cancer can cause death, whereas FM (or Endo for that matter) does not kill per se, I certainly pray that the amount of research effort is at least the same as it is for prostate cancer, especially given the fact that so many actually survive prostate cancer nowadays!

    I really feel helpless sometimes and although I've offered to help Jennifer, a single working mom with a 15 year old son at home, which I presume is likely already a big help to her as he sounds like he's a real good kid, I think she's reluctant to accept my help even though she may want to at times. She has said that she's not accustomed to anyone offering their help but I believe she believes me finally when I tell her that my offer of help is entirely unconditional and comes completely without strings attached so that is some progress at least! Also, she did recently admit that she needs to work on allowing/asking people to help so that is promising to me too because I truly care about her. To me, she is an angel who came into my life at a time I badly needed someone to remind me that there are still many good people around, but with her there's just so much more! Sure she's attractive, but when I look into her eyes I see such a beautiful soul, and she is one of very few that I know who I believe deeply cares about others. And she has such a wonderful spirit and sense of humor, I would never had guessed she suffered from FM unless she told me. I'm just a better person now for just knowing her & I just want to help her any way I can.

    Thanks for everything ladies! Your tips MiMi on areas to check here were especially helpful because I find WebMD a bit awkward for navigating. CeCe your input on vit D & B100 is very appreciated/helpful too! Cheers
    dollbug replied to sebastian_16's response:
    Hello again Scott....I wanted to tell you that yes....I think most of us FMers first have a very difficult time of accepting the illness to begin with. I also think the reason for this is that the majority of us *don't look sick* and we hear this a lot from our family and friends. Well, regardless of what we might look like, it is NOT the way we feel. I think in the beginning we are all in denial and think that perhaps the way we feel is *just in our head* (which is funny, because FM does have something to do with our brain)...and we continue to think that IF we ignore it....then everything will be just fine....(this is so far from the truth and eventually, we do get to this conclusion) ....

    As for as asking for help, yes....I think we have all been there, done that too. As you probably already know, most women are *caregivers*....and we are use to doing most any and everything for other people. So it does become a *BIG DEAL* for us to have to ask for help or even accept the fact that we can NOT do everything that we have always done.

    Now....I would also like to add this as well. Although FM is reported that mostly females are affected with this mean and ugly illness....I tend to believe that there are lots of men who actually have it as well, but men seem to just ignore the aches and pains....and most of the men also refuse to go to the doctors as well.

    This week I was reading about a study which indicated that a husband can get sick and the wife just accepts this and continues to be a caregiver to the husband. But when a wife gets sick, most men will just up and leave, instead of trying to take care of the wife. The study says this happens a lot as men and women get older. I think this speaks volumes as to men being *caregivers*....I do not think most men have a clue how to perform as caregivers. I find this quite sad as well.

    I do want to mention one more thing....this site had Dr. P on board for a while. He is from Ohio (I think)....there are lots of good discussions here under *tips* and/or *resources*. Dr. P met the wrath of the dragon, aka FM while he was in college studying to become a doctor. He now treats people who deal with it. He knows and understands exactly what FM is all about. I hope you will check out the discussions that he blessed this site with.

    You are a good man to continue to try to learn about this illness. I hope Jennifer realizes this.

    Take care.


    Anon_10089 replied to dollbug's response:

    I, like Mimi, was also going to mention that if you live in Ohio, you guys should try to see Dr. Pellegrino. He is a doctor who also has FM. I better not put the name of the clinic down, in case my post gets flagged. Just google "dr Pellegrino Ohio".

    sebastian_16 replied to dollbug's response:
    Hi MiMi & JR, thanks for your replies! You were spot on MiMi with your comments about mother's being caregivers and as I read your words I realized Jennifer had actually told that she's used to caring for others (not other way around) but for some reason that part didn't register with me until you said it. It really does make more sense to me now, considering her reluctance to let me help her.

    MiMi, I have some follow up questions for you regarding what supplements you found helps you. First, I wonder which variety P5P you found you like for your back pain. It seems like P5P is available in 50mg but some also have B6 added I believe. Also, so in addition to the 4000 iu of Vit D, you also take a multi-vitamin with extra D? If so, can you tell me how much more D, i.e., total Vit D each day please? Also, you mention that this is what helps with your FM pain, do you mean the multi-vitamin with extra D and the supplement of Omega's? Also, do you think the Fibro Response and Magnesium Malate are helpful for the FM pain? I appreciate any further elaboration on these supplements if you don't mind helping me to better understand. Also, do you just spray the Stopain on the areas where pain stems? Does someone spray it on your back for you since it's hard to reach yourself? Probably sounds silly, but just curious how the Stopain spray is used. Do you find it provides relief for very long? Finally, do you think the joint supplement you take for hips, knees, & wrists help some for the FM pain?

    CiCi, I was wondering if you found the B50(mg) complex was just not as helpful as the B100(mg) complex was for you or if you've maybe never tried that lower dosage? Also, are you finding that taking the Vit D of 1000 iu in morning and 1000 iu in evening is enough for you, or are you also taking additional Vit D by way of multi-vitamin too? If so, can you please tell me how much more D? I do agree it makes good sense to start with adding 1000 iu of Vit D then gradually increasing 1000 iu a bit at a time to minimize too much at once and hopefully find the amount that seems to help the best. Also, I wonder if there's a way to have Vit D levels checked without a doctor ordering it?

    JR, I was able to find Dr P easily, thanks for also pointing that out. I did ask Jennifer about her current doctor and he is just a regular one, not an FM specialist like Dr. P so I'm hoping to set something up with him and take the 3 hour drive there with Jennifer.

    To All 3 of You: I do know now that Jennifer takes the 3rd most commonly prescribed med on the list on right side of this page under heading 'Related Drug Reviews' (starts with T) in addition to Vicodin. I was right about Ambien, but believe she only takes at night though, as most would suspect, right?

    I truly appreciate all of your input to me, a total stranger, and I will continue to review Dr P's posts here from years past, bunch more to go through that's for sure!

    I hope you all have a wonderful day today, mother's and non-mothers alike because, truth be told, the vast majority of you women are most certainly caregivers to their loved ones, spouses, children (those which have them), siblings, parents, etc.but Mother's Day is the closest day of the year we have for setting aside a little time to just honor what nearly ALL of you do for the rest of us on those other 364 days of the year! So, from the bottom of my heart I would like to thank you ALL for all that you do for us!

    May God bless you and yours today and every day!

    Cheers, Scott
    dollbug replied to sebastian_16's response:
    Hello Scott....MiMi in NC. OK. Actually P5P is a processed form of Vitamin B 6. From the research that I have done, it seems that some people can NOT process the Vitamin B 6. I take the P5P in place of the Super Vitamin B complex (which has other vitamin bs in it.) I also take a Vitamin B 12.

    I take a multi vitamin (one source) which already has the Vitamin D in it. (it has 4000 iu and I get it at walmart) Most muli vitamins do not have this much d in them. There are just Vitamin D vitamins as well....(is she does not want to take this much to begin with - she could get whatever iu she wants to start with and then increase it as she see fit).

    The doctor has to check the Vitamin D level. It is a simple blood test....BUT the doctor does NOT normally check it. (I am not sure just why) you have to ASK the doctor to run it. There is no other way that I am aware of that it can be checked.

    The Magnesium Malate and the Fibro Response are both used by FMers. I get the Source Naturals brand. The regular dosage says to take 3 of them per day. I only take 1 of them and some days I only take one or the other. There are times when I feel like I have to *tweak* my vitamins and supplements.....and for whatever reason the pain gets better. I have been taking these for a long time. I have done a lot of research on the Magnesium and it helps a lot of different things. (headaches for one). These 2 plus the P5P you have to get at a vitamin store.

    Stopain is good to use on places which continue to bother a person. Sometimes I use it on my elbows and wrists. (I have had carpal tunnel and have also broken both wrists - so there are times when they hurt - perhaps due to the weather...(damp and cold) or just overuse of them. I also wear the wrist braces and elbow brace if I need them. The stopain is good to use at night if there are places that continues to hurt. It is only for short time use.

    I am sure she would definitely benefit from seeing Dr. P. But she could also probably find a good doctor in her area or closer. You might check the Helpful Resources and click on the National Fibro Association to see if they have a doctor listed in her area. If not, is there a medical teaching hospital close to her?....she could call them and find a doctor there as well.

    I hope I have answered the questions you had. If not, then be sure and ask again. We are here to help anyone we can find *tools* that might work for other FMers.

    Take care.


    fibroinsd replied to dollbug's response:
    Scott...I just took a quick look at what Mimi said...and I just want to answer the questions from you...
    When I started...I was taking 1000 mg of D in the morning..and 1000 mg. of D at night...along with a multi...after plenty of months of that...I noticed my multi had 1000 units of D. I think more and more companies are putting D in, I cut taking the multi in the morning..and the D at night with magnesium...

    Well, as time has gone along..I now just take the multi...but I also have been eating more eggs in the morning...and I noticed they have lots of Vit. D...and I since I don't have a cholesterol problem...I figure I can get some D that way..

    I had just started taking the B-100 long ago, because of a book I might find it at the library..or through Amazon...called Feed Yourself Right..Oh shoot, I forget who wrote it,...but it was a doctor from Oregon, that I use to listen to when I was in college...He was sort of the Dr. Oz of the day...anyway...his book says what kind and how much of each vitamin you should take..and when I looked on the B-100 vitamins...that fit his list the more closely than others..I will try and find a link to the book.

    Let's put the fun back in dysfunctional !- Mary Englebright
    fibroinsd replied to fibroinsd's response: is the link to the book.. Yourself Right

    Lendon Smith is the author...
    Let's put the fun back in dysfunctional !- Mary Englebright

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