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fibromyalgia

walmartheifer
0 Recommendations

Does anyone else out their have this horrible disease?

Explore topics in this discussion:

Exercise Amitriptyline Cancer Surgery Methadone Morphine Anxiety Rheumatoid arthritis Fibromyalgia Yoga and Pilates Ambien Naproxen Osteoarthritis Acupuncture Arthritis Fentanyl Confusion Allergies Sleep apnea Suicide Pain Neurontin Encephalitis Depression

22 replies

irma09

Yes, I have fibromyalgia. IT is very painful. I take Dyclofenac which is for pain control. It is the safest one that I've been on. It does not relieve all the pain, but keeps the level down to where I tolerate it. I also have osteoarthritis. I have a new knee and a new shoulder. Walking and going up & down steps is very hard some days.
I would appreciate any ideas on some form of excerscise that would be good for me.
Thanks Irma09

efagan

I know people with fibromyalgia so I take note of treatments. Acupuncture is one consideration.

irma09

Dear Walmarheifer,
Yes, I have had this horrible disease since 1998 when I was finally diagnosed by a rheumatologist, only after he ruled out Rheumatoid arthritis. I have pain in all the pressure points....all the time. I think over the years I have gotten used to a lot of the pain, but when I get a flare up it is just terrible. The fatigue is awful, but yet I have to take Amitriptyline to be able to sleep at night for pain. I lost my job because of this disease about 5 years ago. It took me a year, but am now on disability. I am not proud of that fact, but I can't stand any longer than 5 minutes in one spot, I can't sit any longer than 20 min. at a time. Not many jobs can you get with those limitations. I used to be in a band for 15 years. I loved it, but had to quit that because the smoke bothered me, I couldn't stand for that long etc. I take Dyclofenac for pain. does anyone have any other suggestions for pain control. Sometimes this just isn't enough. Thanks diane

walmartheifer

Your'e not alone! I also have fibromyalgia and have had 1 good week since last summer,being this week. Also have ibs chronic fatigue and every other thing that goes along with it! I have found that by taking sleeping med. ambien to help me get the deep sleep that i need has helped me tremendously!I have been taking it for 6 mo. also had a severe problem with ibs and found a product called MSM recommended by another group and someone who also had fibro, just google it an recive info about it,you can also buy it a walmart but it may not be as strong. but i have been taking this natural vitamin for 2 years (it is basically sulpher) now and the first thing i noticed was it helped my ibs within 1 wk and then i started seeing an increase in energy it helps lower blood pressure and great for allergies you name it! this is not my site nor do i sell this product,just would highly recomend it!I have 4 kids and still have 12& 14 yr old at home this has reduced my pain and inflamation as well and allows me to be able to do more with them. i think i would have been bed ridden this winter if not for MSM! I also have had back surgery and bone grafts for buldging disc in back and degenertive disc disease,i belive the back surgery is what triggered the fibro although my mother had it as severe as i do and commited suicide in 1991,they say it can be heridatery which i'm starting to belive because my oldest daughter now only 29 with 2 sm. boys is going thru all the same symptoms! :( I have a lot of depressing days but try to remember something my dr. said last time i went to see him an asked for sothing stronger for the pain he looked at and said let me tell a little story of another patient that is your same build same weight 120lbs that came in here insisting she had to have mre for her pai,she now weighs 325 lbs bed ridden and on a morphine drip! He said I know you are tougher than that! and since that day i have been determined to stay off as much pain ed. as i can and try not to give to this disease. the most i take if i have to take med. is naproxen which is a addictive low dose narcotic and try taking half first . Something i have learned the last 2 years with a sister who has last stage 4 lukemia and will proably live only another year and something that i have now taught my 4 children is that SOMEBODY always has it worse than you do!!! And my sister does not know it but her having cancer has given me will to live every day!Terry in arkansas

walmartheifer

I to would love to do some exercing, but i'm not the type to stick to it! lol! The best thing i do is when sitting ( i also had some knee surgery0 use a foot stool to put legs straight out and relax leg then lift leg slightly and point toe and tighten then relax it. also I try not to give in to laying down because the or you are up moving the more you can get thru the pain,take control of the pain dont let it control you! I also stand up sraight with one arm in the air lean over to one side and go down about half way and and the do the other side 5or6times this streches your arms an tightens your sidesI have started doing a lot of baking with my girls when i can and teaching them to cook meanwhile i am up and on my feet working my mind and my legs and my arms and they love the special time that i can give them when i can't always do and go when they need me to! don't know if you like to cook or bake but thought i would pass along this link to this wonderful group where i get recipies from all over the world and favorite copycat reaustrant recipies as well and the people are so friendly! Pantry_Challenge@ yahoogroups. com just copy and paste this link and join. I have also been getting execise by just walking at my own pace around the yard i love the outdoors and nature (owner of 13 pet birds) But now that the weather has finally gotten warmer my daughter 12 said mom why don't we have a garden like we used to (before i got sick) she said i will help you when you need it, hm.. what a good idea so my husband tilled a place worring i would over do as he knows i will! Well we planted a garden alright it just kept getting bigger and bigger lol! now i wil be getting a lot of exercise! I'm sure this is proably not mch to help you with but i'm no experct when it come to exercise! Have a great day! Terry

screamer

Yes I have it what is your question? What are you doing for it. I have had it since 2001 I have read lots of books and I can tell you my experience and what helps. Let me know how you feel. I know...awful right. It is depressing as heck. It has depleted everything I used to enjoy but I have found ways to cope and I would love to help you. Do you have trigger points that ache? They are not the tender points but painful pts other places. I look forward to your reply. We are all here to share experience and what works for one may not another. I went to the clinic in pittsburgh for almost a year for IV treatments and shots. I drove six hours each way every two weeks for eight mos. My husband drove actually. Be aware of anyone who says they can cure it there is not a cure. They dont even understand it yet. wb
jeni

screamer

I just read the posts. I didnt see them at first. I have to say to the people afraid of pain meds. I was so miserable I wanted to die. I went to the hospital and was put on a fentanyl patch and it really made a huge difference at that time. Years now and I am weaning off the patch to methadone also a strong but not as addictive narcotics. Pain meds get abused by people indeed however if you are in pain you may get used to it but not addicted to it as in abuse. An addict abuses the medicine. I am extremely responsible with all the meds. I tried everything before I got to where I am. I have muscle spasms all over that make me scream. This may or may not be the fibro. Probably not though. Nobody seems to know. This increases the pain and discomfort. I have worst case scenerio of this disease. I love neurofeedback it helps a lot. I also use a light sound modulator called proteus that you can find on ebay for 157 dollars that raises your alpha brain waves and calms you down. It is wonderful. Highly reccomend this. Just because one person is bedridden on morphine does not mean it will happen to everyone. It is ridiculous. Some people give up frankly. I spend a lot of time in bed and have learnd not to overdo it. I dont make a lot of plans. If I am having a good day I take advantage of it but slowly. Vitamins B12 sublingual, magnesium, and I take a supplement called lumbrokinase (ebay) that is 49 bucks but it keeps me from getting trigger points that hurt. Not tender pts. They are a different thing. Trigger pts can be anywwhere on your body and they hurt and to get rid of them you have to rub them hard and it hurts. Normal people get them also. Don't eat anything yeasty if you crave sugar it is because your blood is full of yeast and it actually makes your pain worse. If you can get off of sugar even for a month youd feel better. I know that seems impossible but it is something you get used to. I did not have success at acupuncture but it helps some. I also learned a lot at the fibro clinic in Pittsburgh but I dont really feel that much better and it is super super expensive. If you happen to llive near one of them the IV therapy might be a good thing to do. I cannot exercise and you should not do muscle building at all. Just stretching. Yoga and pilates are good stretching but I could only do about 15 minutes at a time. Good luck
jeni

adele

Hi, I have something to tell but it's really hard to believe, there is a cure!!! I did go to the Fibromyalgia Relief Center in South Lake Tahoe in California, It's a 8 week program and yes you have to be able to be away from home for 8 weeks, they also have treatment funds if you qualify. It is called Menengial Decompression The advancement in the test for Fibro will definitely change the way Fibro is looked at forever, it's a simple orthopedic test , the test is not only diagnostic but also prognostic. Dr. Bradley is now teaching this treatment all over the country. There is to much to explain just go to your computer and type in Home of the Fibromyalgia Relief Center and read it's amazing and it works!!!!! They are the one's who discoverd it and people from all over the world go there to get the treatment.

Tevsmom

I have had fibro for well over 15 yrs. It is an autoimmune syndrome, there is no test for fibro, no cure. You can go into remission and have relapses. I use neurontin for pain, it works well and is not a narcotic. But as with everything what works for one may not work for all. I would be really interested in the claims of a test and a cure for fibro, its strange that my neuromuscular dr knows nothing of this new developement. Have a Great Day.

screamer

Pain medicine is not a weight gain medicine. I am horrified that he said that. I went to the hospital in so much pain I couldnt stand it. After tests they finally put a pain patch on me and I got so much better. I have worst case scenario of this disease and I am on many medicines and more than one are for pain. I am habituated to them but I am not addicted. Someone that has an addiction seeks more and more, they disrupt their lives, they become liars and theives. If you take it as it is intended and you are truly in pain it does not get you high it just relieves the pain. I have had doctors tell me that even though it isnt my fault I am an addict. I felt horrible. I learned that I am habituated which simply means if I stopped the meds I would feel withdrawl. Also it means that I have a high tolerance to medicine for pain. That is a difficult thing when you need to have surgery. These are the two sides.
Jeni

PEGGYB

AFTER 10 YEARS OF ALL OVER PAIN & FATIGUE I FINALLY GOT A FIBROMYALGIA DIAGNOSIS FROM MY RHUMY IT HELPS KNOWING I'M NOT CRAZY JUST LIVING IN FIBRO FOG AND PAIN IT CAUSED SLEEP APNEA, MUSCLE LUMPS, FATIGUE, CONFUSION, ANXIETY SEVERE ALLERGIES AND PAIN ALSO HAVE GASTRIC PROBLEMS. ANYONE ELSE?

bobbi28

I was diagnosed with fibromyalgia back in1996/7 when doctors were just starting to recognize it. My neck pain is often excruciating, complicated by other cervical spine problems.
I take Cymbalta, an antidepressant which has been approved for the treatment of fibro. A recent increase in dose has helped. Using an analgesic, homeopathic cream by Traumeel also gives some relief. The last few days I've had to take muscle relaxers because of the pain. I am going to research the new treatment methods being done in California.

walmartheifer

Yes i to have had to take muscle relaxers and naproxen and use libroderm cream on my arms and neck the last couple of days.The weather here in Cabot ar.has been nothing but rain,rain and more rain! we are getting flooded and more expected more pain! :( I have just found my daughter 29 has been diagnosed with fibro.and i really feel for her, both her sons 4&6 have adhd and she has her hands full enough especially after having back surgery as well this year! If you fnd something that works for you when you go back to the dr. please let everyone know! Hope you getto feeling better and thanks for the reply! It always helps to talk to someone else who is going thru the same! Terry

walmartheifer

I still feel like i'm going crazy! Because no one understands this disease! when i talk about it i hear oh yea you have arthritis or i hear thats justwhat dr.s say when they don't realize it is truly a disease! My daughter thought the same one dr. told her their was no such a thing,Unbeliveable! I don't for a second wish this on any one but wish they could have our symtoms for a week!I too have all your symtoms!And stiil raising the last of 4 kids. I can no longer work but try not to give in to laying down because then i'm done or and will be in bed for days! Take care

kam3

Yes,plus a few more,not related. About 15 yrs. but the last 3yrs. its gotten alot worst.And i totally agree about support; i cant even find a good dr.

walmartheifer

recived news this morn. maybe packing up and going to witchataw kansas. Not what i wanted to hear right now!I myself will have to start over with all this ****. cant even think about this this morning,been working on trying to get house painted and take out carpet in house and put down hardwood floors.omg. how would i move my 13 birds??? STRESSED!

walmartheifer

HAPPY MOTHERS DAY!

The Invisible Woman
It started to happen gradually¦ One day I was walking my son Jake to
school. I was holding his hand and we were about to cross the street when
the crossing guard said to him, "Who is that with you, young fella?"
"Nobody," he shrugged.
Nobody? The crossing guard and I laughed. My son is only 5, but as we
crossed the street I thought, "Oh my goodness, nobody?"
I would walk into a room and no one would notice. I would say something to
my family - like "Turn the TV down, please" - and nothing would happen.
Nobody would get up, or even make a move for the remote. I would stand
there for a minute, and then I would say again, a little louder,
"Would someone turn the TV down?" Nothing. Just the other night my husband
and I were out at a party. We'd been there for about three
hours and I was ready to leave. I noticed he was talking to a friend from
work. So I walked over, and when there was a break in the conversation, I
whispered, "I'm
ready to go when you are." He just kept right on talking. I'm invisible.

It all began to make sense, the blank stares, the lack of response, the way
one of the kids will walk into the room while I'm on the phone
and ask to be taken to the store. Inside I'm thinking, "Can't you see I'm
on the phone?" Obviously not. No one can see if I'm on the phone,
or cooking, or sweeping the floor, or even standing on my head in the
corner, because no one can see me at all. I'm invisible.

Some days I am only a pair of hands, nothing more: Can you fix this? Can
you tie this? Can you open
this? Some days I'm not a pair of hands; I'm not even a human being. I'm a
clock to ask, "What time is it?"
I'm a satellite guide to answer, "What number is the Disney Channel?" I'm a
car to order, "Right around
5:30, please." I was certain that these were the hands that once held
books and the eyes that studied history and the
mind that graduated summa cum laude - but now they had disappeared into the
peanut butter, never to be seen again.

She's going¸ she's going¸ she's gone!

One night, a group of us were having dinner, celebrating the return of a
friend from England. Janice had just gotten back from a fabulous trip,
and she was going on and on about the hotel she stayed in. I was sitting
there, looking around at the others all put together so well. It was hard
not to compare and feel sorry for myself as I looked down at my out-of-style
dress; it was the only thing I could find that was clean. My unwashed hair
was pulled up in a banana clip and I was afraid I could actually smell peanut
butter in it. I was feeling pretty pathetic, when Janice turned to me with
a beautifully wrapped package, and said, "I brought you this."

It was a book on the great cathedrals of Europe. I wasn't exactly sure why
she'd given it to me until I read her inscription: "To Charlotte, with
admiration for the greatness of what you are building when no one sees."

In the days ahead I would read - no, devour - the book. And I would
discover what would become for me, four life-changing truths, after which I
could pattern my work: No one can say who built the great cathedrals - we have no
record of their names.

These builders gave their whole lives for a work they would never see
finished They made great sacrifices and expected no credit.

The passion of their building was fueled by their faith that the eyes of
God saw everything. A legendary story in the book told of a rich man
who came to visit the cathedral while it was being built, and he saw a
workman carving a tiny bird on the inside of a beam. He was puzzled and
asked the man, "Why are you spending so much time carving that bird into a beam that
will be covered by the roof? No one will ever see it"
And the workman replied, "Because God sees." I closed the book, feeling the
missing piece fall into place. It was almost as if I heard God
whispering to me, "I see you, Charlotte. I see the sacrifices you make
every day, even when no one around you does. No act of kindness you've
done, no sequin you've sewn on, no cupcake you've baked, is too small for me to
notice and smile over. You are building a great cathedral, but you can't
see right now what it will become."

At times, my invisibility feels like an affliction. But it is not a disease
that is erasing my life. It is the cure for the disease of my own
self-centeredness. It is the antidote to my strong, stubborn pride. I keep
the right perspective when I see myself as a
great builder. As one of the people who show up at a job that they will
never see finished, to work on something that their name will never be on.
The writer of the book went so far as to say that no cathedrals could ever be
built in our lifetime because there are so few people willing to sacrifice
to that degree.

When I really think about it, I don't want my son to tell the friend he's
bringing home from college for Thanksgiving, "My mom gets up at 4 in the
morning and bakes homemade pies, and then she hand bastes a turkey for three hours and
presses all the linens for the table." That would mean I'd built a shrine
or a monument to myself. I just want him to want to come home. And then, if
there is anything more to say to his friend, to add, "You're gonna love it
there."

As mothers, we are building great cathedrals. We cannot be seen if we're
doing it right. And one day, it is very possible that the world will
marvel, not only at what we have built, but at the beauty that has been added to the
world by the sacrifices of invisible women.

walmartheifer

my daughter was just given the newest med. by her doctor last week.she said so far its workin good has depression med.in it if you want to look it up the name is Savella. I hope to try it when i go back to dr.

pumpkin02151

I went through a period of time when no-one knew what was wrong with me. I was told/its arthritis,or you are getting older.It was supposed to be normal, but I saw others who weren't having the same pain I was. I had an accident at work and I fell. I kept telling mu ortho dr that it felt like everything was out of whack. He told me after extensive visits that he suspected fibro/I then saw a rheumotologist who confirmed this. I now have a great doctor who understand what fibro is. I now have some relief from the pain with amitipyline.I was skeptical at first, but it did work for me. The more that I read, the more I see that not every med works for everybody.I now have to get to the exercise part of my treatment. Its hard but I am trying. Thats all my doctor asked me to do,was to try.A lot of people dont understand this condition,and personally I am tired of explaining it. I am going to do the best I can and try to get better.Good luck to all of you! Its a long road.You need to help yourself.

caringcounterparts

Savella, the new pain med for fibromyalgia patients, has worked very well for me! I noticed mild side effects (my heart beats a little faster and I feel a little warmer), but I've noticed quite a bit of improvement in pain level, not just in fibromyalgia pain points but nerve pain as well.

Ellen
www.bulletpointblog.com

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