Please respond

Have you or someone been completely cured from FM?
No - 100.0%
Yes! For 0-3 years now, & am on med - 0.0%
Yes! For 0-3 years, & am not on meds - 0.0%
Yes! For 3+ years now, & am on meds - 0.0%
Yes! For 3+ years now, & am not on meds - 0.0%
Other-do not have FM or cannot answer within parameters - 0.0%

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New Member

Date Joined May 2010
Total Posts : 11
   Posted 5/10/2010 6:15 AM (GMT -6)   
My wish for what will be read, is that it either a) helps someone or b) helps me (via YOUR argument). With that in mind, this is what I do and do not know about FM and my body:

NO one knows what FM is, what causes it, or what cures it.

There is no money in curing it and the demand for a cure is low enough, that it is not a priority and is therefore, no where near the point of breaking ground towards a cure.

Lots of people will tell you otherwise and take your money.

The aches, pains, and extreme fatigue that is felt is real and severe/disabling enough to need medical attention.

There are good dr’s and bad dr’s, and even the best intentioned dr can mislead an FM patient due to lack of knowledge, as again, NO one knows what FM is..causes it..or what ...cures it.

Relief is hard to come by most of the time.

This is depressing.

I no longer feel passionate about anything. No good feelings. No bad ones. Just, a lack of passion as I feel that so much has been taken out of my control. I feel like I used to be in charge of so many things and that through hard work I would unlock other responsibilities. I feel that FM has stripped away my control, ripped out the responsibilities that I worked to obtain (before I even could enjoy them--I’m 23), and zipped me inside of a pitiful existence of purposeless repetition.

I also feel confused by other people and so I have withdrawn more and more. Feeling disabled has made the bureaucracy in the US all the more apparent--and disgusting to me. I have limited time and long to do meaningful, actual work, not 8 hours of bullfish 5 days a week. For example: paralegal work. But to get an actual job, I must first jump through hoops from here to Mars and my 5 years of school, 2 quarters from a degree accounts for NOTHING thus far. And I am having an inferno of a time graduating as the remaining classes I have to take are all lab-based. I love hands on work, but cannot physically stand or heck, make it to class everyday, as I used to be able to back in middle school and early high school.

My plan, given the circumstances, is to aim there anyhow and be as blunt and direct about it as necessary to be taken seriously. And then push my way in the “system” from there so that I get a job researching disease or the nervous system. I like chemistry and I hate pain. There is a giant hole of ignorance concerning FM and I have the need to fill it. If you Reader have work for me such as this, towards filling that hole of ignorance, I dare you, hire me, see if I won’t be useful.

To summarize my failed treatment plans are: antidepressants, muscle relaxants, sleep aids, vitamins, exercise, sun, dieting, chiropractic, massage, heat. And by failed, I mean, did not provide long term relief.

Currently, I am off all meds although I admit that Cymbalta helped my pain. (This was not helpful as it did not combat, but increased the most disabling part of FM--the fatigue.) Yes, drugs are expensive, but it’s not about the money: I want to heal, not live in a land of permanent daze. I feel that there is a lot of social pressure for people with FM to do drugs, yet oddly little pressure on people to zip the lip on suggesting ideas to help out their butt. It’s like telling someone who has MS, “don’t wear sunscreen. That should help!” And yes, maybe some of these suggestions are helpful to some people, but so far, the scientific link has not been established. I just want to wait and have that link more established before deciding to dive in to one regime or another. Also, by off all meds, that includes anything of illegal nature as well as alcohol.

Lastly, this site should allow for people to express themselves in whatever manner they wish because a) it’s therapeutic b) those offended may censor themselves c) if a child should stumble upon such words, it their caregiver’s inattentiveness to blame, and not this website’s. At the least, it would be nice if ONE forum or ONE chat room was permitted true freedom of speech.

So I ask, am I right? Am I wrong? What say you?

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 5/10/2010 7:00 AM (GMT -6)   
ziplocked, I do not believe we met. Welcome to the forum! Reading your post I do feel your
pain. I think it is unjust for anyone to suffer from fibro. I always feel bad for the young to
be hit with it. I'm 58 and most of my younger years were relatively good.

Learning you have an illness is no doubt difficult. I went through a period of grief, mourning
the loss of my good health. It would be a lie if I said that I don't miss the days where I
could be active like I once did. I do miss all the activities I once was able to partake in.

It does take a long time to fully accept the fibro, that doesn't mean I am not going to do
everything in my power to make my days worth something. I believe we are worth
the effort to try to make each day pleasant, regardless of the pain.

We are always faced with choices. We can decide how we are going to suffer with fibro
or what can we do to help ourself. I'm not ready to give up and it sounds like you aren't
either...THAT IS GOOD!

It is frustrating when you want to feel "normal" and you are trying the meds and they
fail you. We all are so differant in what we need to feel "good" but we are all striving
for the same thing... a painfree "normal" existance.

This forum has certain rules that we must abide by. There are things that are not permitted
to discuss. I can only say that this forum has been a blessing to me. The support here
is so valuable and genuine and is coming from people who understand because they feel
the pain and frustration I do. I will abide by those rules to get the chance of feeling I
am not alone, to help someone else if I can and take in all the knowledge that is shared

Ziplocked I do hope you stay around and get to know the loving , caring people of this
forum. Last but not least, do checkout fibro 101, second thread on page one. Sherrine
has compiled some wonderful inf for us fibromites! Glad you have joined us. We do care!!!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Veteran Member

Date Joined Apr 2009
Total Posts : 673
   Posted 5/10/2010 8:21 AM (GMT -6)   
Welcome to the forum. I would like to say that I totally understand your pain and frustration. I am 22. So I am young as well. I have a two and a half year old son, and there are so many things I would like to be able to do with him, but I can't. One of the most upsetting things about fibro, in my opinion, is that the pain and fatigue rob us of so many joys in life. A lot of us are on a lot of different medications just so we are able to function.
I would be nice if the government would look and say that there needs to be funding put in to finding a cure. More and more people apply for disability because they are unable to function in the working world. And while not all get that disability, many do. So, knowing this, why would the government not look and see that there needs to be funding put in to finding a cure. It is true that no one knows the exact cause of FM. There are many different speculations into this, but no one knows for certain what causes it.
about the forum...sometimes it is a little frustrating when I can't say exactly what I want to. But I will gladly give up my right to curse on here if it means I can talk with and give and receive help from the wonderful people on here.
I understand your pain and frustration. Know that this is a family here, and we all look out for each other.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. Dr. Seuss

Regular Member

Date Joined Apr 2010
Total Posts : 72
   Posted 5/10/2010 11:08 AM (GMT -6)   
Never mind cured - I haven't even been able to find help....

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 40384
   Posted 5/10/2010 12:56 PM (GMT -6)   
I take adderall for the fatigue and it really helps me. I hope that you can find what works for you. I know that it is so frustrating that there isn't a cure for this. But the best that you can do is take it one day at a time.

I once subscribed to the fibromyalgia network newsletter. You might want to check it out. You can do it on the net. They have a lot of good information. Just kind of expensive.

I hope that you see better days.

Best wishes.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Veteran Member

Date Joined Apr 2004
Total Posts : 6056
   Posted 5/10/2010 2:13 PM (GMT -6)   
ziplocked87 said...
Lastly, this site should allow for people to express themselves in whatever manner they wish because a) it’s therapeutic b) those offended may censor themselves c) if a child should stumble upon such words, it their caregiver’s inattentiveness to blame, and not this website’s. At the least, it would be nice if ONE forum or ONE chat room was permitted true freedom of speech.

Please let me address your above quote first. This site is privately owned by a compassionate man who suffers from several chronic conditions himself. He has made the rules to follow his own conscience and creed and if we wish to avail ourselves of this free forum we must abide by his rules. Please acquaint yourself with the forum rules so you don't get edited.

As far as the rest of your post... I feel for you but at least you know some time in your past that was pain free and you could move with energy. I've had the symptoms of this disorder since I can remember at age 3 some 55 years ago. I thought everyone was in pain all the time. I figured that gymnists and ballerinas were as heroic as the Little Mermaid with the pain stabbing her legs with every step she took. Kneeling in church used to make me pass out which was a bit of a problem going to Catholic school with Mass every morning. Walking 1 mile home from school in the snow was pure torture for which my mom had absolutely no sympathy. I learned early on not to complain or I'd get my face slapped for "whining".

Reaching adulthood and being able to use a heating pad when I like or take a hot shower when I wish has been very liberating. Being able to research things that help my pain and aid in my fatigue has been uplifting. I, along with several others on this forum have found several things that help this disorder and although they aren't cures, they do help.

Having lived with pain all of my life I have trained my brain to ignore it at most of the low levels. I take Malic Acid and Magnesium to help my muscles generate energy more efficiently. I use otc pain meds, mostly old fashioned aspirin, ibuprophen and tylenolPM to keep going and when I must, I rely on my narcotics, but only occasionally. I have raised three children, started two businesses and am doing what I must to keep going. My family is aware of my disorder and my daughter who lives with me has fibro as well. We just KOKO! (Keep on Keepin' on!)

If you do a search for Dr. Daniel Clauw at the University of Michigan you will be able to see some solid research into the fibro and chronic fatigue syndrome problems. He is one of the foremost authorities on Fibro and has been instrumental in having it declared a real disorder. There is hope. There are medications that help. There just doesn't seem to be a way back to total health yet. We are miles ahead of our brothers and sisters who suffered from this in the 1800's when it was first identified. Some of them walked across this country without so much as an aspirin to their name... and they just kept going. If they were wealthy they took to their beds and were "frail" and "sickly" and pretty soon were invalids. At least we know that in order to keep going we must keep moving. They didn't even have that knowledge. You are welcome to vent, rant and rage. We know what you feel. But you can do this and we will help.
~ Jeannie
Moderator for Fibromyalgia and Diabetes

Forum Moderator

Date Joined Apr 2005
Total Posts : 17055
   Posted 5/10/2010 4:22 PM (GMT -6)   
Hi, Ziplocked, and welcome!  I'm glad you found us and joined in. 
I know fibro isn't fun to have but there sure are plenty of things out there that are worse.  You don't die from fibro and you usually don't end up completely incapacitated from it either...unless you sit around and don't move.  That will stiffen you up in a hurry!  That also causes more pain.
Far more doctors do know about fibromyalgia then they used to.  When I was diagnosed, it was called fibrositis.  Many doctors do know what fibro is but they don't know what causes it nor do they have a cure.  But, this scenerio is also true of other illnesses, cancer for example.  They are working on it and are learning more about this illness.  Check out Fibro 101...the second thread on the forum.  There are links to good info about fibro and there is one called Doctors Respond to New York Times Article.  That is an enlightening link, I feel.  You will see learned doctors describing this illness, what they are now studying about it, etc.  So, don't think nothing is being done.  Progress is being made.
I didn't develop fibro until right before my 40th birthday but I did develop Crohn's disease as a toddler.  By the time I was in my late 20's I had two toddlers of my own and another baby on the way.  Along with this I had intense cramping and bloody diarrhea and had to use the bathroom about 25 times a day.  Talk about crimping ones lifestyle!  shocked  
I do not take prescription medications for fibro.  I take ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements and extra vitamin D3 to help with pain and fatigue.  Many with fibro are deficient in these vitamins and nutrients.  There are links in Fibro 101 all about these and how they work in your body.  This might be something to talk to your doctor about.  This has helped me get in control of this illness.
Also, you need to keep moving and stretching.  If you don't, you will be stiff as a board and have more pain.  There are some good stretching exercises in Fibro 101.  You should find a gentle exercise that you enjoy doing.  I walk and swim as my exercises.   
I know it's not "fair" that some of us are afflicted with these illnesses...especially at a young age....but no one promised that life would be fair.  But, life can still be wonderful in spite of these illnesses.  You are the one that makes the choice whether or not you will enjoy your life or be miserable.  I chose early on to live my life to the very best of my ability and to work around my problems.  I'm happy to report that I have had a full and enjoyable life in spite of my illnesses.  I'm still going strong and am glad about that because I have a great life ahead of me.
Lastly, this site is wonderful just the way our administrator designed it.  Profanity is not allowed and you will definitely be edited.  I'll even edit if you try to skirt around the rules..."bullfish" for example.  I allowed it this time but now that you know, please don't do that again.  We do have members as young as 13 on here that are sick and need help so we do keep this family friendly.  We are mostly adults with, hopefully, a good command of the English language and can express ourselves without the use of "colorful" language.  Our rules, I feel, are what helps us be an award winning site.  Much has been written about HealingWell.  Here is a link about us if you are interested.
I do hope you start to get a more positive outlook on this illness, face it head on, and get it under control.  We are here to help you every step of the way.  I'm glad you are here and I hope to hear more from you soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

New Member

Date Joined May 2010
Total Posts : 11
   Posted 5/15/2010 2:15 AM (GMT -6)   
Thanks for all the responses. I just checked the poll. It looks like no one has been cured (big shocker). Weird how I keep hearing stories about how people will overcome this, and yet have never talked to or met someone who has. Hmm...

Yes, I know I won't die from FM. But that doesn't mean I'm less angry/depressed. That's not a cheer-you-up factoid, but rather a very unhidden truth about FM. It means I'm trying to plan for a LIFE with this invisible drain on my energy. That is WAAAAAY harder than knowing I was going to leave this world soon.

After all, choosing to live with FM is the hard path. I do not think it would be easy being terminal, but I certainly do not think it easy being chronically in pain.

Post Edited By Moderator (Sherrine) : 5/15/2010 10:34:41 AM (GMT-6)

Forum Moderator

Date Joined Apr 2005
Total Posts : 17055
   Posted 5/15/2010 11:43 AM (GMT -6)   
It isn't easy living with chronic pain but  you can have a great life anyway.  You just have to keep trying until you find what helps you be in control of this illness....instead of this illness being in control of you! 
When I first got fibro I was very upset about it, too.  I couldn't imagine going through life in pain.  But, I've found what works for me.  I'm 63 years old now.  This past winter my son visited me in Florida and we headed for DisneyWorld.  I really wasn't sure how I would do but I knew I was going to go and have the best time I could possibly have.  When we entered the park there was a place to rent wheelchairs.  My son asked if I wanted one and I told him NO.  I figured if I got really in pain, I would sit down and my kids could go and ride the rides.  I decided to take a little more ibuprofen and Tylenol than usual, so the pain wouldn't sneak up on me.  Know what?  I walked all through Fantasyland and even rode the rides, including Splash Mountain with it's 52 foot drop!  We were there from 9 AM until 6 PM and I had a blast.  I was very tired and was sore for a few days but, boy, was it worth it!
That's how you have to face this illness...head on and in total control  I've had a wonderful life in spite of this lousy illness.  If I can do it, anyone can.  Keep a positive attitude and decide (choose) to not let this get the best of you.  You will be so surprised at what you are able to do and accomplish with fibro.
I hope you start getting some control of your pain soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 5/15/2010 11:58 AM (GMT -6)   
ziplocked, I live with fibro along with some diseases that have the potential to kill me.
We are not imortal, we will all die someday from something. I do not worry about death.
I take life one day at a time, trying to make each day a good day. Living is for the living
and I choose to be happy. We all have choices amd I choose not to dwell in self pity. I have
found it is much harder to live when I spend time angry about my situation. Living with a
chronic illness is difficult but it becomes easier once you fully accept it and work towards
what you can do to help yourself. I am a lot happier since I let go of the anger!

I hope you will find happiness.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Regular Member

Date Joined Apr 2010
Total Posts : 372
   Posted 5/15/2010 1:58 PM (GMT -6)   
Ziplocked, I am sorry to hear that you are having to face this illness at such a young age. I am 51, and was just diagnosed a few months ago.

For me, Fibromyalgia has had a very gradual onset. Although my symptoms have worsened during the past 3-4 years (Probably put into fast-forward due to Perimenopause), I can trace some of the symptoms back to my childhood and young adulthood. I've always been prone to sinus infections and UTI's. In my early 20's, I started being bothered by recurring bouts with iron-deficiency anemia. In my mid and late 20's, I started having severe back problems and TMJ.

My 30's brought about increased back problems, fatigue, and severe pelvic pain. At that point, I was going from doctor-to-doctor, just trying to find an explanation. I none of the doctors could give me a diagnosis, and I think that they felt that this was all in my head (I was beginning to wonder myself). I finally went to a very reputable chiropractor, and got some relief. At about this time, I started exercising regularly, both cardiovascular and with weights. My pain lessened, as I was unwittingly controlling the fibromyalgia. However, the fatigue worsened. At 37, I had my daughter (my 3rd child), who is now 13. Following her birth, my fatigue became even worse. I was working at a very stressful job, and trying to manage a home with 3 very active children.

Surprisingly, my achiness did not worsen again until my mid-40's. During this time, I was going to a doctor who was not very good at following up with test results. He ordered 2 sleep studies be completed two years apart. Both indicated that I had sleep apnea and RLS, but he did nothing with the results. Four years ago, I was diagnosed with Adult ADHD (my daughter also has ADHD), and was put on Adderall XR. This helped tremendously with the fatigue, so I was able to accomplish more. However at about this time, the pain seemed to worsen. Perhaps I noticed it more, since I was not as fatigued, I don't know. I had also had GERD since I was pregnant with my daughter. This worsened. I was put through many more tests. Finally my back pain became almost incapacitating this past fall, and it was starting to radiate to other areas of my body. My husband and I finally had to DEMAND of our doctor that I be referred to the pain clinic at our local hospital. I had a close friend who had been diagnosed with fibro a couple of years ago, and we had similar symptoms. I had been trying to convince him of this for quite sometime, but I don't think that he believes in fibro. He finally agreed to the referral. He also ran some bloodwork, which revealed that I was anemic again, along with a D3 deficiency (this was the first time that he had tested for this). At this point, he put me on Trazodone, which helped immediately.

The neurologist at the pain clinic prescribed lyrica and flexeril to me, and these have helped tremendously. He also recommended water therapy. So along with the diagnosis came TREATMENT. Something that I had not really had. After going through about 3 weeks of PT, I purchased a membership to the gym at the hospital in order to use the pool for water exercise. I go there about 3-4 times a week, and this has helped a lot. The pool is kept at 92 degrees, so the water is warm and feels very good. I also do stretches at home. I am gradually adding on walking and using an elliptical machine as I start feeling better. I take calcium supplements, D3, iron, vitamin E, and COQ10, in addition to the Adderall XR, Trazodone, Nexium, and Lyrica. Yes, I am taking alot of medication, but without it, I would be unable to do the exercising to control the illness. I am convinced that I would also soon be unable to work or do household chores. Although I do not like the diagnosis, it has forced me to start taking care of my health (which I admit that I have not always done). I have learned to slow down, enjoy life more and above all else, make time for exercise. Even though I have a long way to go before I actually feel as if I have control over the illness, I do feel better than I have in years.

This diagnosis can bring about some positive things in one's life if they apply themselves. Just don't allow it to get you down. Please do keep us posted as to your progress.

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 5/16/2010 12:30 AM (GMT -6)   
Hello Ziplocked, Sweety I am so sorry that you are hit with this. One thing take a deep breath.

No matter what age, yes this is a hard diease to have but there are a lot worst, like everyone has said upbeat it won't kill and what won't kill you will make you stronger.

With that said. Yes, I work from home so that makes this diease a little easier on me. I watch children. Although there are days I can't play ball with them, I can't run with them. I am almost 50. I'm not really sure how long I"ve had this because alot has to do with Brain Fog. Oh, and the Brain Fog. Back in 2005 I wrote a book and even had it published, it was about my life, if it wasn't for that book most of my life would be forgotten. After I had written it is when I got DX.

When I was first Dx with Fibro, I remember crying and being depressed, we all go through it, I was cleaning houses at the time and loved what I did. I cleaned for the elderly and ran my own business and made good money. Finally, after crying because of the pain I told my b/f that I just couldn't do it anymore. So I changed caree's and glad I did.

I remember washing a pot at my home and talking to my son, who had always seen mom strong and I had to ask him to finish washing the pot because I couldn't hold it anymore it was to heavy.I had to start asking for help. Years ago when I was married to my first husband I learned if you want something done do it yourself, well now I have learned it's alright to ask and if it doesn't get done well that's alright too.

I know right now to you there is nothing funny about this Diease, I try to find a little humor in it when I'm not scared, I try to laugh at the Brain Fog, see that's how I knew there was something wrong with me, I couldn't spell EGG, I got in a fight with my b/f and spelled it EEG which we know is wrong. I won the spelling B when I was in school and even my mom used to call me to ask how to spell a word, key word being used to.

I'm suprised no one has told you to check out the Lupus sight and print out the Spoon Therory (SP)

Anyways, this is a great group of people on here and they will help. Just ask. They have helped me through alot.
DX Fibro 12/31/07   Guess I can put the rest dx
PSTD  Bi Polar 2/04  Depression most of my life  IBS
RX Amitriptylin 25mg
God gives doesn't give us more than we can handle. So this too shall pass.

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