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What is your story?
47 Replies
sbolton - March 16

I am getting ready to publish my first kindle book! It will be a short fibromyalgia guide, primarily to help "normals" understand our battle a bit better, and also just to compile information from many sources. I would really like to add some stories from fibro patients to round it out, and thought there might be some folks here who would be willing to contribute your stories. If you are willing to do so (feel free to send them via email if you like, by clicking my screen name and clicking on the "messages" tab) I would like as much info as you are willing to give, and hopefully this would include at least your first name (make up an assumed name if you like), your age if you don't mind (if you don't want your age included, i will respect that), the city or state in which you live, how long you have been struggling with FM and anything else you feel is relevant. It could include the story of how you got diagnosed (or the lack of a diagnosis), changes in your life since the onset or diagnosis, list and/or description of your symptoms, etc. Include anything you think other fibro patients, or friends/family trying to understand, would find helpful or interesting.
Thank you in advance to everyone willing to contribute


Jocelyn - March 16

I clicked on your screen name and got nothing. Hmmmmm, don't know what to do.


sbolton - March 16

My apologies, That was a feature available on another forum. I have looked around and it doesn't appear that this forum has a feature for sending a message privately. I have looked and do not see any rules prohibiting my posting of my email address, but when I tried to put it in there it was blocked. I will describe it to you though, so if you desire to send me your story you can email me directly. it is the username mrssbolton, and it is a gmail . com address. if you will include your email address or some other form of contact info for yourself, I will contact you for your final approval before publishing anything that references your story at all. I hope this will work this way, I guess we'll see :-)
Thanks for your patience


January - March 16

Hi, could you explain a little more of what your book is about?? Are you writing a book to help "normals" understand us better? Or are you covering anecdotes in general, are you going into possible causes of fibro, or treatments people have found helpful? I've been on the website for over a year, and we have discussed SO many different things. You may already know, but you can plug in any topic in the blue search box at the right, and pull up discussions about it.

Also, there are times this website is very active, and then times when there aren't a lot of postings. Are you under a time deadline?

Congratulations on writing your book. That's a very positive thing to hear.


sbolton - March 16

The book is primarily to be a description and compilation of information on the symptoms of fibro, to help normals understand, as well as to help fibro patients understand that they are not alone and not going crazy (as many of us have felt at times when our symptoms became overwhelming). I intend to include quite a lot of my own story and the stories of other patients (which is where my request to you guys comes in) to illustrate the points in the book. I do touch a bit on research into the causes, as well as some common treatments, but this book is more about helping folks understand the experience of this particular struggle. I hope this makes sense.
I am not under a specific deadline, however I hope to have the stories together within the next few weeks so that I can get the book wrapped up within a few months. I am at the same time working on the art work for the book, while I gather anecdotal information.
I do know that these forums are an excellent place to find discussions and information of all kinds, and what I am hoping for is stories about the experience of struggling with this illness.
I hope this helps, and thank you for your interest :-)
-Shelly, 38, North Texas


valjoy - March 24

Good Morning sbolton, Is it ok if I write my story on the reply part of this page, I can't seem to get onto you with the message tag, I can't see a message tag but then I am not good on computers. Might write just on this site "Reply". valjoy.


Jocelyn - March 24


Try this and follow her instructions:

username mrssbolton, and it is a gmail . com address. if you will include your email address or some other form of contact info for yourself......

Good luck it worked for me.


cueball1958 - March 28

Good Morning, I have had fibromyalgia since 1995, diagnosed in 1996, diagnosed at 38 yrs old. I am now 54 and I am in so much pain today that I can barely move at times. It has never "gotten better", only worse. I hurt from the top of my head, literally to the tips of my toes. Everything hurts, burns like a sunburn and twitches. I have been prescribed every medication known to the medical world and NOTHING has stopped the pain. It is our lot in life and we live with it. 800 mg motrin works as well as any prescription drug to take the edge off the pain. All the other pain meds just made you so dopey you don't care about the pain. I personally have found nothing that helps with the pain. Lortabs help, but I can't work and take those and I am afraid to take those regularly as they are so addictive and they don't help with the intestinal troubles that come along with the fibromyalgia. I have learned to just live with it and get up every day and ask God for strength to get through the day. I can't get on disability because I can't afford to be off work long enough to qualify for disability. So I live in pain and suffer and suck it up. What else can I do? The pain and burning and muscle cramps and weakness and extreme exhaustion and chronic fatigue and lack of sleep takes such a toll on my body. I've gained 80 lbs over the years from not being able to exercise because it hurts so very bad that I can't stand it. My arms feel like they are going to fall off. I have been tested for MS an ALS and all the other diseases and I don't have any of them. I sometimes feel like I am going to lose my mind from the pain. So my daughters tell me to take anti-depressants but I can't take them and work, they make me too woozy and un-functional. My faith in God is all that I have to cling to with this disease. It's the only thing that gets me through from one day to the next. I would never wish this awful pain on anyone, but I do wish that those around me could feel what I feel just for 5 full minutes, to know how I hurt and how tired I am, so they would understand when I have to say "No, I Can't today". I can barely lift my arms to type today. But I got up and got to work and here I am, now I have to get off here and try to do some of the work I need to do to make a payday. I was just wondering if there are others out there who feel like I do? It won't get better, trust me, it only gets worse. Anyone who says it gets better, they don't have it, they have something else. This doesn't get better. I take hot, hot, hot baths and lather myself with EMU OIL cream. It takes the edge off the pain a little. My daughter gives me massages almost every day (she's a massage therapist and she is wonderful!) and that helps for a little while. And because I have osteoarthritis on top of the fibromyalgia, not only do I have to live with the pain of the fibro but I get to live with the excruciating pain of the arthritis on top of it, so not only do my muscles hurt 24/7, so do my bones. What a life huh? God only knows what He has in store for me and my purpose here. I for one welcome the day He takes me home so I don't have to suffer anymore. My children and grandchildren are all I live for. If it weren't for them, I'd be begging God to take me already.


kvc33 - March 28

I would highly suggest that you see a naturopathic physician who can test you for food allergies and suggest natural treatments for your pain. Weight gain doesn't come from lack of exercise, I don't exercise and have no extra weight. I suspect that what you are eating is not agreeing with you and resulting in IBS and increased pain. If you got the weight off, it would help with the arthritis as well. I am not criticizing your eating habits as I have no idea what they are and even so-called healthy diets can work against us. You know that drugs aren't your answer and you see your future as continuing to get worse, so it's time to try something else. You may also have vitamin and mineral deficiencies which you can also be tested for. I have had severe CFS and fibromyalgia (mild) for 17 years and it has not gotten worse. There is hope, some people do recover.


Jocelyn - March 28


I am so sorry to hear how badly you are doing. Believe me, there are plenty of people in your situation, but Fibro is an unpredictable disease and it effects every one differently. Some people mildly and other people severely, like you.

I have had Fibro and Chronic Fatigue since I was about 32, but have just been diagnosed a few years ago, I am now 56 when I started with another symptom and was diagnosed with Sjogren's as well, with an elevated sedimate rate.

I am still working full time, but like you, I have had days that I could just sit at work and cry, the pain was so bad. I've gained a lot of weight, not just because I cannot exercise, but I eat constantly because of the stress this disease has put on me. Stress makes me eat and then I gain weight.

I finally got to the point that a wheel chair and handicap parking were looking like a place I was going to need to visit. Instead, I picked myself up and decided to painfully go to a physical therapist who deals with people with Fibro. When I first started it wasn't good, I had a huge flare and got real scared, he calmed me down and started me back on stretches only, until the flare finally passed. Once that passed we went back to muscle strengthening exercises at a decreased rate. My muscles were so weak it took a lot to get them moving, but after 4 months, I am finally feeling the pay off of working with a PT. The problem is if you don't do the exercises every day you will not benefit and that is usually what happens. The pain makes you quit. So..I kept trying and kept an eye on my body reactions. They were tough, but my muscles are slowing getting better, the pain is slowly getting better, and I am sleeping better too. I'm not fooling myself, it is going to take years to get to where I want to be and probably some backwards steps. Since the meds make me sick I can only take Advil to take the edge off. Some days, I can even skip a dose.

Every one is different, but I need to take the weight off to help the pain. I'm working on it. My skin used to pain me, everything pained me.

Well, I wish you could find something to make you feel better. Take care of yourself and try to eat a high protein diet to give you some energy. I have found that food has helped me with my energy level, as long as it is the right foods.

Don't give up, there are so many things you can still try.

Keep well and keep your chin up.


sinkbee - March 29

In regards to the artwork you mentioned,a picture of a voodoo doll would seem appropriate.I use that image when I try to explain how the pain is so random and unexpected.I think it's a good visual for the "normals" to understand quickly.


January - March 29

Hi cueball - I'm so sorry you feel so bad, and I am writing a long post because I do relate. You sound very depressed, and that is why I think maybe you have a gluten intolerance or celiac, like I did. I've written about these things before - but they're archived, so here goes…

I agree with Jocelyn that PT will help you a lot. And, I agree with kvc that weight is much more complicated than diet and exercise. I think it has to do with your biochemistry. I always gained weight on certain medications, and dropped it when I stopped them. I am now healthy weight, don't diet and don't exercise (though I am trying to start).

I'm not sure if my pain was like yours - no sunburn feeling - but I felt like I had a bad flu every morning, ached all day and was exhausted. I also have bone and spinal problems (and those ARE getting worse with age). However, I was able to rid myself of the "fibro flu" pain, AND depression, AND GI problems, AND extra weight (you mention all of these), AND strengthen my immune system. My blood tests had shown inflammation markers, high sugar and cholesterol. Everything normalized. Even though I eat all the sugar I want, my glucose reading was lowest it has ever been! Here's how I did it.

I read an article about a man with chronic pain, a 30 year runaround - diagnosed with everything up to bone cancer - but he really had celiac disease. 97% of celiacs are undiagnosed, and testing is unreliable. Doctors are ignorant about it. Estimates are that 1 in 7 has some kind of gluten intolerance and 1 in 133 has full blown celiac disease. For more information, I recommend the excellent book "Dangerous Grains," which you can google online. Also google "celiac disease," but the usual medical sites are unreliable, read the forums. (Celiac disease is an allergic reaction to gliadin, a protein found in cereals, in the small intestine - it gets inflamed and irritated, just like your skin would if you had a bad scratch or sore on it, but you usually have no awareness of this.)

I went strictly gluten free, and kept a diary. ABSOLUTELY NO wheat, oatmeal, rye, barley or other cereal grains. (I eat tapioca, corn, rice and potato and their flours, and meat, eggs, fruit, and veggies.) My pharmacist ensures my meds are gluten free. I read all labels, and avoid boxed or bagged food because of ingredients like "starch" or "flavorings" -- in fact, I whip out my celphone and call the company to check - and complain if they have no gluten-free choices! No more dressings, sauces. Most soy sauce is made from wheat! No more Chinese restaurants. Some root beers have "starch" in them! Read ALL labels. If I go out to eat, I tell the manager I need gluten free, and get simple meat, baked potato and veggie. Keep it VERY simple because a lot of places will lie about being gluten free when they're not. (People don't understand the diet.) If I get gluten, I hurt, sleep a lot, then get very depressed. It takes a month to feel better. 1/8th of a teaspoon of flour can cause a problem for a celiac! So if I have a salad, and there is one crouton in it by mistake, I'm in trouble.

It took about a year - and that included setbacks due to getting gluten by mistake. Then I realized my aching pain was gone! After a couple years on the diet, I saw a famous (Italian) celiac specialist. My blood test was negative - because I'm gluten free. He told me I would have to eat gluten for 3 months to get a diagnostic blood test -- No Way!! When I look at bread, all I see is PAIN. However, on the basis of what I told him about my response to the diet, and all my clearly improved bloodwork, he diagnosed me with celiac disease.

Depression is the PRESENTING symptom for most people with celiac. And you seem a little depressed, cueball! I'm glad you have not taken antidepressants, because they can be very nasty drugs and withdrawals are awful! I hope you will give the diet a try - it might work miracles for you! Find a good nutritionist or alternative doc to guide you.

Doctors are ignorant about this disease. It has not been taught in medical schools, it is barely mentioned as a "rare" disease, considered a disease of childhood, with diarrhea and failure to grow. It is usually never diagnosed. If you have it and continue to eat gluten, you open yourself up to many serious diseases as you age, due to malabsorption - the book Dangerous Grains discusses all that. Gluten intolerant people often need to supplement with extra vitamins and minerals, as kvc said. If I don't take my minerals, I get severe muscle cramps.

I now eat ALL I WANT -- but I'm not that hungry. I think if you have celiac, you get addicted to wheat just like an alcoholic - it's bad for you, but you crave it - donuts, bread, cake - you have to break that addiction. Also, I suspect you are very hungry because your body is starving and is not able to absorb the "right" nutrients. For that reason your gut is immobile, your body is hanging on to everything, extracting whatever it can - making you fat, but not well-nourished. (Just my opinion on that!) Good luck to you. Hope you feel better.


valjoy - March 29

Dear cueball, I sympathise and understand everything you saying. The only real thing I think that has helped me over the past 15 months has been a Gluten Free diet. It gives me that little bit more energy of an afternoon so I don't have to go and sleep for 1-2 hours, not every day but most days I can continue to keep on going. Before the diet I had to have my afternoon sleep. It is worth a try. As far as your weight goes, medications can do that to you, hold fluid and blow you up and gain weight. Please, please try the gluten free. God bless. valjoy.


cueball1958 - March 29

I so appreciate everyone's responses. I have tried to exercise and my muscles have such horrible spasms when I exercise and I have cramps and charlie horses so bad in my legs that I don't sleep for 2 or 3 days after exercising. I will definitely start on the gluten free diet. When I was struck down with the fibromyalgia, I was working out every day, was a size 8 and in excellent physical condition, when it hit me, it was like a ton of bricks and the drs then didn't know what it was and put me to bed for 4 weeks, because I literally could not walk, had to crawl to the bathroom. In 4 weeks time, my muscles had all turned to jello and after a month of tests ruling out everything else, MS, ALS, etc., I was told I had fibromyalgia and they started me on seizure medication. At that time, it was what was prescribed. WOW! Couldn't function at all. Needless to say I lost my job I had at that time from having to miss so much work. At one point during the past years, I went to a pain dr, who LOVED to prescribe pain relief meds. I was on 11 different meds and could barely get out of bed in the morning. I recall now that I got more relief from the hot towel treatment and massages than I ever got from the medicines. I also believe a lot of my pain is directly from my spine, the burning and raw nerve pain. I can stretch my spine and I tingle and burn from head to toe, but the drs said they can't find anything wrong. I don't think I am going to the right doctors. I am going back to my dr and get her to test me for Celiac disease and start on the gluten free diet and try my best to exercise. Because something has got to give. Thank you all for your kind words again and it's so good to know you are here to talk to. Two of my daughters both have been diagnosed, one when she was 17, she is 30 now and her pain is pretty bad, my 35 yr old daughter is on full disability from that and arthritis already. Poor things, I hate that they had to inherit my diseases. I got them from my mother and father. Mother has fibro, dad has arthritis. God bless each and every one of you and you are all in my prayers.


cueball1958 - March 29

I do work now and can't afford not to and can't afford to be off long enough to qualify for disability. I live with a lot of stress, too. My husband had 3 different cancers in the past 3 years and 2 surgeries but by the grace of God he is cancer free today. He survived bladder, prostate and pancreatic surgery, all a miracle the drs say. Not a lot of people can survive all of that with NO chemo or radiation. Had his bladder and prostate removed in Sept of 2010 and his pancreatic head removed in January of 2011. So needless to say, I have had to neglect everything, including my own health for quite a while. He has been in the hospital 3 times since his bladder removal with kidney infections, one very severe, kidneys started shutting down. Then in May of 2011, my youngest daughter and her two small boys had to move in with us in our tiny 2 br apt because of abuse by the father of her two small boys, and she is still living with us, which has been stressful. And she and my husband do not get along. He's her step-father and he thinks I should just kick her to the curb and make her make her own way and she is trying, but she was my daughter long before he came along and she'll be my daughter long after he's gone and he is jealous of our relationship which puts added stress on my body. I am constantly in the middle, having to take sides. OMG! I just want to run away. She is getting on her feet though, went through massage therapy school and has passed her state board exam and had her first interview yesterday and hopefully will be going to work very soon, making good money and she'll be able to get her own place soon. That's what families do, you help one another through hard times. My husband has no family to speak of, neither his sister nor his brother relate to him, they all live far apart and don't communicate. He has no relationship with his estranged children from his previous 2 marriages. They all live spread out across the U.S. and that's another long story, I could write a book. It so helps to sit here and type all this out. I really would like to just disappear and leave a note telling them all that I was abducted by aliens and go find me a quiet spot on an empty beach under a palm tree. But I'm too poor for that. So I have to stay here and deal with it all and just keep going. I have 6 years to go and I can retire from my job with a full pension, but I'm so afraid I'm not going to be able to hang in here long enough. If the pain gets any worse, I don't know what I'll do. Thanks so much for listening.


cueball1958 - March 29

I also just heard about taking Napolea, which is cactus juice. It is supposed to be excellent for inflammation and pain. It's all natural and sweetened with an all natural sweetener, Agave nectar. I'm going to try it. Sure can't make it any worse than it already is.


valjoy - March 29

Dear cueball, Such interesting reading and now wonder you are so sick with a life of stress, just like myself plus it has been passed down the family line, no different to my family. My Great Grandmother, my Grandfather, my Mother and my Sister all have it and myself. Stress doesn't help and neither does damp, cold weather. I will sit and write a nice long letter to you soon but today I am feeling very off to say the least, the weather is changing and the pain is terrible. I just wanted to let you know that I am thinking of you and hope the Napolea cactus juice helps. Please keep me informed about that. I have tried Goji Berry for months but it did nothing but left me broke, very expensive juice. I hope your Daughter finds her new job soon as that would be a relief to you. I will write soon and tell you my story, extremely stressful like your life.
I am thinking of you. Love, valjoy.x



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