My Doc put me on trazadone for sleep, I take up to 300mg at bed time, this works most of the time, but there are still times my husband gets up to go to work and ask what am I still doing up, sometime the man frustrates me to no end, you think after being married 28 yrs he wouldent have to ask.

What a bunch we are?! I have had fibro for years now. A difficult delivery did it for me. I have scoliosis, a deformed hip, spinal stenosis, headaches including migraines, sensitivity to odors especially perfumes, memory loss, insomnia, terrible tinnitus, tmj, short & tight Achilles tendons, and now have a mild to moderate hearing loss. Wow! I'm a mess! Lol. When I have a flair, I use that time to pray and study The Bible. My family is the best. They have stepped up and do so much around the house so that I can use my energy to teach 2 women's Bible studies and help my mom who is legally blind, hearing impaired and diabetic. Knowing we are not alone is so important. Thanks everyone, for sharing.

Heard that about the skin burning, This past july I spent four days laying in bed with nothing on but air couldn't stand clothes and had to put pillows all around to keepsheet from touching my skin. Blessings on me ( and all of you) that I haven't had one that bad since. Have since changed Dr.'s the last one was a quack in the dictionary based since . My new one basically started over checking all past tests and re running them if needed, at this point I seam to have no ability to maintain potassium in my system. Have gone from 18 different medications daily (how I hate taking pills) to eleven and at present we are working on geting me off two more slowly isweaning. I think the worst thing for me is the extra senitivity to the sun I burn really easily and the itching is terrrrible. But its not like any of us can just lay down and give up cause that would just make us quitters and I have not recieved the impression that anyone of you are going to give up soon and my DH says he hasn't meet anyone more pigheaded than I am

I just love my rice socks, I used some of my sons gym socks(new), and sewed sections so that the rice doesn't pool all in one end. I also took a vest apart and sewed one out of double layers of flannel , sewing pockets into it to keep rice in certain areas kinda large to fit in microwave but it does fit heat it up and then sit in front of computer at 2.44 a.m. reading and writing , researching ways mostly to sleep for more than 3 hours at one time.

my smell is bleach and up to now it was the only thing I used to clean my whole house and one days I almost passed out smelling it cleaning the bathroom, and for all my trouble I got a diagonsis of COPD on top of all other blessings.

check for herbs that will help, and cheaper than drugs and better for your body.

I found that malic acid is amazing. It is the acid found in apples. You can get it at GNC or Vitamin World for about $8 a bottle. One tablet morning and night. There are no adverse effects, no problem mixing it with other meds AND you will know within 24 hours if it will work for you! It is the difference between getting out if bed or not for me. Hope it helps some of you. Blessings to all.

Hello Honey,
Such a blessing to me to see you speak out for alternative Medicine. I am 110% for it. Saliva and blood test will tell a lot if the DR is trained in what to look for. V-D is a huge thing for the health of your body. Fror bones and muscels. And a lot of people are lacking in the right amounts of minerals.
You are so blessed to find a DR who thinks outside the box too.
I had 2 breast cancers in one breast and then later a melonma on my foot. All was healed all with diet changes and herbs.
The Dr said just cut the boob off, what my husband said. If you have a head ache you just cut your head off? No you figure out why you have the head ache. Well you figure out why you have cancer that is growing in your body. Everyone has cancer cells, just some do not grow. I could go on but said enough. Just want to thank you for your post. I go to the reg Dr then call my alternative Dr and ask what I need to do. We do need reg DR's to set bone's etc but most push to many pills and then the side effects are worse than the symtom that you had to begin with. I hear all the side effects and no way? I know there are some that do help, I'd just rather not take the chance. Blessings to you.
ConnieF

I feel for you. I have Fibromyalgia and am in the "joy" of a major flare-up right now. I can withstand the pain but the fibro fog that comes with it makes me have to put my quilting on hold for awhile. I read the directions, turn around and totally forget what I just read

: :evil:

Talk to your dr and tell her how you are feeling, and that you want her to check you for FMS, because it sounds like it to me. A classic case.

Oh my, what an ugly can of worms I've opened here! It makes me sad to know I have so many "sisters" under the skin here.
I have suffered from this "DD"{damn disease) most of my adult life. It flares and subsides at the most inconvenient times.
I retired on disability several years ago. I loved my work as a nurse. I have always been very much a people person. But I got to the point where the fibro-fog made me afraid of making a serious mistake. The memory problems some days were so bad I would hear a loud buzzing and my head would feel tight...I quit.....and became the opposite. Now I prefer to stay home most of the time. I go through spells where I hardly even leave the house!! Of coarse after I returned home from caring for my daughter with terminal cancer I went downhill for a while.
Bless my wonderful husband....he encouraged me so much to get back into quilting. He is my rock. I don't always like what he does, but I know things could be so much better for us if I didn't have this DD.He is always there to praise and encourage me...I am very lucky there.
Well I didn't start out to write my life story, just to say I feel a special closeness to you all.
Do any of you remember a news item a few months ago about the xm retro virus? http://chronicfatigue.about.com/b/20...nked-to-fibrom virus? It has been linked to fibromyalgia and related disorders.Go to the list on the left and click on xmrv.
I know it's a retro virus that gets into the dna stands somehow and hides there as it replicates....Doesn't that sound just too cozy? Lucky us.. :?
We need to see if we can keep this as a subject on the index so we can help each other...Maybe misery does love company. I know I look forward to everyone's pictures and comments each day. I have really enjoyed quilting again and sharing it with all of you!!
Now back to the reality of this flareup that is trying to wrestle me down

:-( Ditter

I've suffered with fibro for about 15 years and I usually get along just fine with the pain, I live with 5/10 pain. When I have a flare, I'm usually down for a few days. Now that I'm working, I have been taking tylenol extra strength and alternate with IBU when I start creeping up to 6/10.

Trazadon made it so I couldn't move. Couldn't even call my hubbie in next room for help.

If they want us to move this I will open a yahoo group for us.

I have too many friends with fibromyalgia and feel blessed not to have it myself. I have had serious problems with my feet in the past 7 - 8 years. I was on a walker for three months, saw 6 docs and 2 therapists and still couldn't walk. Out of desperation I went to a doctor of oriental medicine for acupuncture treatments. It is truly amazing how good those worked for me! Acupuncture is also supposed to work very well for fibromyalgia and arthritis. I am back on my feet now and feel better than I have in several years, with no medications. The treatments work on the whole body, so there are other benefits as well. And no, the needles don't hurt, they are very thin, almost like a stiffer hair, unless they are quickly placed into a bony area like the backs of your hands or feet. Any discomfort is well worth the results!

Thanks to all of you! I have trigeminal neuralgia and fibromyalgia but was not aware of the pain in the bottoms of my feet being related, or the memory problems! It is so refreshing to hear from people who totally understand!!

I have fibromyalgia and lupus too. For me, it feels like a big truck ran over me, backed up and ran over me again... :cry: Oh yeah, I was severely injured in a head-on collision 10 years ago too. I had lupus before the accident, and was diagnosed with fibromyalgia about 8 years ago. I take prescription pain meds, and was taking ibuprofen until recently. My lupus may be attacking my kidneys now (bp is way high, edema in my legs, up to my knees, etc.) so I had to knock off the non-steroidal anti-inflammatories. I was put on prednisone AGAIN just a week ago, and it hasn't helped much yet. The cold weather bothers me something awful, and for that matter, any weather change bothers me too. I am on disability and always will be, so I am fortunate to be able to just take it easy and take care of myself. DH also has fibromyalgia, and was diagnosed with chronic lymphocytic leukemia in October. His fibromyalgia affects him pretty much like mine affects me. We both suffer from indescribable fatigue as well. We cope, and we take care of each other.
Misery loves company, huh?

Oh this is classic...I forgot to mention that my DH and I both have problems with memory :oops: LOL

Please try this: After suffering for years, five of my friends have no symptons of fibromyalgia after NAET treatments. You can find practioners all over the world. It is an alternative medical treatment for allergies. I am so excited. I have had all the symptons mentioned here for about 10 years since moving into a new house. The chemicals triggered fibro. Since being on the NAET treatments I have gone off my thyroid medicine, with the doctors help, and am able to function better, sleep better and best of all, think better. I just had to respond to this topic, I know how devastating this can be, I had to put life on hold and now I am enjoying things I thought I never would be able to do again! Look it up on the internet for a doctor near you!

What is it?

google it, and see what you think..they claim to cure autism and something also said about treat alchemizers..(spelling)
there are pros and cons on everything, what works for someone,may not work for others..I understand it is expensive also. but have no facts to back that up.


if my insuruance would cover chiroprators, i would go back to them, to help with the pain. I have decided to check into the vitamins to add to my meds.
Bev, do you quilt/sew?
i see you are new here..your first post. Welcome to the message board.

I Googled it and I have had that done. The acupuncturist didn't call it that, so it was just the terminology that threw me off. It did work for me. I used to be severely allergic to everything, including my DH. We worked on it for months, and tho I still have some allergies, I am over all much better. And can live with DH! LOL

Yes i get the metallic taste, and have had one hand that itches all the time, but I get other spots that itch to.

[quote=blahel]

Oh Nellie,
How do you do it? I hope you have family to help out when you are both down. So often when I have a flare up, I'm not sure for a while if I am getting the flu or a cold. After several days I can tell the difference. If my husband were to be down at the same time, it would be harder for us both..(more for me probably). I hate to hear a grown man whine...
I have been so fortunate that my dh is strong and in relatively good health. He works out at the gym several times a week and that has helped him a lot. I wish I could do that but some days walking to the mailbox is exhausting!
Not a good situation to be in. when I was working,I had home health clients in similar situations.It was tough sometimes.
This just proves to me, there really is always someone in a worse situation then we are. My heart goes out to you. I am sure you have both had to develop a lot of coping skills over the years.

I wish you a good nights sleep,

Ditter

I am so sorry about your congestive heart failure, please keep us posted on how your doing. my prayers go out to you. Penny

I have that too. I feel like I'm getting a cold and after a few days and nothing developes, I realize it's the FMS

i suggest some of you google the names of your meds i reconize some of them as friends that are in the mental health system as antidepresents and antipsycotic meds doc often think your pain is all in your head plese sicuss what meds your doctors are perscribing what it is for and what the side effects might be it is important to know all this or docs can take advantage of the situation you can also read your medical file and see exactly what the doctor is saying i had that experance with one of the workcomp doctors also check with a workcomp attorney of your fibro started up from stress at work you copuld be entitled to workmens comp payment just an idea a freind get workcomp for hers and another friend gets full dissability from the military for her fibro becase it started when she was in the service please check into this stuff

this is exactly what it feels like and more, and do talk to your Doc, and tell her you think you have fibromyagia, don't let her brush your problems aside. be strong. Penny

Yes some of the meds are for depression and such. We know this but we also have to cope with depression and panic attacks as they are triggered by fibro.

Thanks for the welcome, I am a veteran addict, third generation, raised under the quilt stands, true quilting fanatic. It is so interesting to read about other quilters and their fibro experiences. NAET is kind of weird, but so many people have been helped, including me, that I am going to stick with it. I didn't think I had allergies at all. I am not allergic to pollens, grasses, weeds, obvious allergens, but very allergic to foods, chemicals. Also, like another commenter, I was even allergic to my husband. NAET treatments have evolved. I traveled to a lady that used accupuncture and avoidance.( you had to avoid the allergen for 24 hours.) She charged $70 a visit. A chiropractor in my town certified for NAET and does not use needles or avoidance. His fee is $30. If you try the treatments, plan on at least 20 treatments. It's not that bad if you think of people who get allergy shots every month for the rest of their lives. You can't put a price on getting your life back! I was surprised to see how many NAET clinics there are around the country.

Hi everyone, yes I have fibromyalgia too, and am feeling like *******, too bad to describe except that i don't want to move, the only thing that keeps me going at the moment is the need to sew. I can't believe so many people are affected. Have you heard about Fibroducks?

No I have not. what is it?

I had it and a friend who is ten years older and looks ten years younger and in fit shape said, it takes years of oversue and abuse to damage your muscles and cause that much pain. Try this over the counter Vitamin E and Selenium TOGETHER every single day! You won't notice at first, but in a few months I realized it when someone offered to help me carry a heavy basket because of my pain in arms (I then realized, my arms didn't hurt at all anymore) It did work for me. Thats all I can say. It never came back.

I'm going back to my rheumatologist! You ladies are describing my symptoms, especially this last week. I am always exhausted by 7 pm, have trouble sleeping and this week I was achy all over and expected to have the flu the next day and nothing happened. I am improving a bit but very concerned. My Rh did bloodwork last year and said everything came back normal. He put me on Vit D therapy and wants another blood series after I'm done with the Vit D. Thanks all of you for sharing your stories.

I am a pain sufferer also along with my mom, sister, and gm who has passed but she suffered terrible with it. Stress is a huge trigger. I have never felt well even as a child. I have always felt like I have been beaten by something. My sis was the same way. She relies on all the medication to help manage it. My mom and myself stay very active, exercise and watch our diets. We manage the pain that way. My friends tease me about being an exercise freak but it helps me so much. If I don't move about I get so stiff and sore. I saw my gmother struggle and she was addicted to pain medication and nerve medication for her whole life, she was bedridden when she passed. It was so sad to see her like that. I went to a support meeting for fibromyalgia and chronic fatigue syndrome, there were people who were wheelchair bound from it. I refuse to let it take hold of me like that, so I stay as active as I can to help manage it. The only medication that seemed to help me was Celebrex, Meds are so expensive I can't afford them. Exercise is pretty inexpensive so that's how I manage. It doesn't take the pain away completely but I feel so much better than I ever have. I run and kickbox about 6 days a week. Pilates and yoga helps too. I know a lot of people that can't even stand the thought of exercise with the pain they are in but for me it is my medicine. My heart goes out to all of you who have this pain syndrome it is no fun but you know the other medicine that helps me too is quilting. I am a hand quilter and it helps me destress.

Hi Ditter,
Thank you for your concern and compassion. Even though we have lots of stuff to deal with, my DH and I keep a very positive outlook. We've made a conscious decision to LIVE everyday--no matter what. We do have family nearby, and a very active church family--both of which will do whatever we need to help us through our worst times. We try to plan for the "down" days by making meals ahead and keeping stuff around that we can do that doesn't take much energy. Even though we both live with lots of pain, we find joy in each day.
I hope that we can all be of help to each other through this topic post. I know I have learned some things from this post that I didn't know before. Like itching--DH and I both have that from time to time--I didn't realize it could be related to the fibromyalgia. I have long suspected allergies to be part of the cause of this nasty disease, too.
I hope we all get a good night's rest--and pray that there will be relief for all of us at some not too distant time.

I have had fibro for close to 15 years. Flare-ups cause me to even have hard times walking. I truly understand your pain and how it can really get you down. I am on constant pain meds and yet I do not always get relief. I am home when it acts up and that is how I got interested in quilting. When I am having bad days my quilting keeps me sane and I have a hobby to help me get through those days. It helps my days pass with accomplishment and is very therapeutic for me. It helps me to get through the hardest days and helps me forget the pain some too. I may get housebound, but my quilts help me smile!
Debbie
In Ohio

After reading all the posts I see that many of you suffer alot of things I am. The fiber fog is horrrible. I ake dilaudid for pain and it is one of the strongest pain pill you can possibly get and I wish I didn't have to. I take Zanaflex because flexeril does nothing for me. I have COPD, Diabetes, IBS, Lupus, and other medical problems and on 16 meds. I take pills for depression too. I am lucky to sleep 3 hours at a time. I can not sleep for anything. My legs are bad. I have to use the scooters to shop. I walk with a cane too. My legs get spasms severe, burning and painful feet, back , arms..you name it. I just got SSI through as there is no way I can work. I never know what tomorrow will bring and can not even try to make plans because I may be down that day. I try to watch what I do to prevent pain. Walking is painful and I use to be a very active person and it is hard when I spend 75% of my time home in the recliner or my hospital bed. I do better in the summer. But I try to keep moving. My three children are grown..my 20 year old has FMS too but is doing great! I love spending time with my grands (Got a new baby girl three days ago!)..and my faith in God keeps me going. He is with me and helps me through those days when otherwise I would give up. Prayer helps! Thanks to those with suggestions as I have learned alot from those of you with advice! Quilting is my second love, I love it! When my legs get me down.I get quilting! :)
Debbie
In Ohio

Fibro Ducks is working through Facebook on both sides of the Pond to enhance awareness of Fibromyalgia, you get a little duck and take pics of wherever you go with it among other things. I think they are doing a great job.