In the Now
Shawna Jones

Fibromyalgia - I've Learned to Live Each Day One at a Time

Posted Wednesday, September 23, 2009, at 2:05 PM
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  • Thank you for sharing the information on your plight and this disease.

    I had the good fortune to acquire this syndrome before it was written off as a "yuppie flu" or updated version of "the vapors."

    The excellent doctors I had actually looked for (and discovered) T cell abnormalities instead of assuming I had some sort of Munchcausen's Syndrome that compelled me to claim every symptom profiled on "Donahue".

    I did the treat-the-symptom bit,devoured truckloads of anti-oxidants recommended on the CFIDS website and dealt with the pain,mental dysfunction,and lethargy for two decades until I had a spontaneous and unexpected remission (which has lasted almost another twenty years).

    I've forgotten what "normal" felt like so all I can say is that I don't hurt,I can complete a thought and I can dress,feed and clean myself.

    I have hair and can actually use my arms to shampoo,shave and use a curling iron.

    Parts of my body still look like outtakes from a zombie movie (and feel worse than they look) but,most of the time,I don't have much itching or neuropathy and I can conceal most of the lesions with clothing and make-up.

    I don't take massive doses of immunosuppressives any longer but I do have to coddle my vital organs due to the stress put on my heart,liver,pancreas and kidneys.

    Still,what I have survived and put behind me makes my current state (and any signs of aging) seem idyllic.

    I feel more vital now than in the so-called "best years of my life."

    Whether this ailment is triggered by environment,contagion,genetics or a plot by the Illuminati,it does make one live in the present.

    One learns to adapt,adapt,adapt and reassess goals,relationships and one's self-perception.

    There is a solidarity that forms with other disabled people (particularly those with intermittent or "invisible" maladies that gives one common cause with survivors of depression,lupus,Gulf War Syndrome,environmental sensitivity and the like.

    Today,I can see.

    I can make a plan for the end of the week that I might actually see through.

    I can prepare a meal,remember my phone number,follow the plot of a book or show without having to re-read or rewind every two seconds.

    I can leave home or see rooms in my house other than the bedroom or bathroom.

    You are showing people that they can live with this disorder and still accomplish something with their lives.

    I relate my story so it can be known that this trouble is not necessarily permanent or irreversibly damaging.

    Good luck to you as you face this challenge and good luck to all who are dealing with current misfortune.

    "What doesn't kill us makes us strong."

    We're still living and,at this rate,we're going to be tougher than Superman,Rooster Cogburn,Captain America,Dirty Harry,Rambo,Buffy Summers,Jean Grey,Sarah Connor,Sidney Bristow,the Howling Commandos and all the amazons on Paradise Island.

    The downsides of such troubles are obvious.

    The less evident benefit is that we change our priorities,appreciate what truly matters and find that disaster is a crucible that can refine our ultimate nature even as it destroys everything else.

    -- Posted by quantumcat on Wed, Sep 23, 2009, at 5:49 PM
  • I have a friend that has this, she is in real pain and suffers. It is a terrible thing to watch her try to go to work and live with this chronic pain. She is now on disability, which she genuinely needs after working so hard for so long in her life.

    Some days she cannot get out, she is having a fibro day. Other days she does good. Weather affects it as does stress. I feel deeply for people going through chronic pain, I did not know how frustrating it is until i had a thyroid disorder sideline my life. I had to fight to get my docotrs to listen to me but I found several who did.

    I have good and bad days.. more good than bad now with medications..

    thanks for sharing...

    -- Posted by 4fabfelines on Thu, Sep 24, 2009, at 11:17 AM
  • Thank you quantumcat and 4fabfelines for sharing your own experiences. It's nice to know at least we're not alone (even though I would never wish this on anyone else). We should form a support group where we can all vent...a blog group maybe, since most of us don't get out much.

    -- Posted by shawna.jones on Fri, Sep 25, 2009, at 12:19 AM
  • A lot of folks with chronic diseases share symptoms and solutions.

    For instance,FMS is very similar to lupus and I was told that some of my troubles were due to my body "eating" thyroid,essential nutrients,etc. before I could use them.

    I might have all the B-12,magnesium,insulin or what-have-you my systems needed but they weren't absorbed or weren't properly utilized.

    I'd test for deficiency diseases even when I ingested or made normal amounts of what I required.

    One ailment can trigger another but having one source of stress alleviated can free the body and spirit enough to better cope with what's wrong and ,maybe,even make the repairs necessary to function in something that approaches a normal manner.

    A blog or support group would be nice so long as we don't become "Super Cripples" or let it deteriorate into a pity party.

    Guess what?

    We AREN'T normal and we aren't living the same sort of life as everybody else.

    We each have our own challenges that we meet with varying degrees of success.

    We still get to contend with a lot of ordinary hassles.

    (And some mundane worries we'd give anything to face.)

    We're no better or worse than the next fellow.

    We just drew one particular short straw for one particular time.

    Sometimes,we get a cure or remission and that makes us "survivors".

    Other times,we might wonder why we can't get past a disease and forget about it once it disappears from the celebrity benefits,the magazine articles,the talk shows and the movies-of-the-week.

    It might be a relief to hang out (online or otherwise) with folks who have "been there."

    We could laugh,cry,advise,complain and talk about the impact the thorns in our flesh have had on our goals,our loved ones and every other aspect of our lives.

    I'd hope we wouldn't get jealous of those who seem to be managing better.

    Nor do we need to lambast the less successful people or accuse them of malingering or giving up.

    We're not low on faith because we get depressed and frustrated and don't get instant relief.

    We don't need to urge another person to "snap out" of the despondency their own hardships are bringing.

    But,it wouldn't hurt to have fellowship with folks who have had like experiences.

    We can talk each others' language and,maybe,deal with our own "Post-Traumatic Stress Disorder".

    We can bolster one another's hopes and understand if someone just isn't up to overcoming that day.

    We could come up with as many approaches as we have people because not everyone has computer access for blogs,fora and chat rooms.

    As you said,not everyone can get out and the homebound aren't necessarily up for company.

    If there is no universal solution re getting together,we can seek and discover a lot of little different answers.

    One thing that's learned from chronic illness or a handicap: there's a way around *any* thing.

    It just takes a little time,effort and good fortune to find the right trick.

    -- Posted by quantumcat on Fri, Sep 25, 2009, at 6:31 AM
  • quantumcat...you are an inspiring, strong visionary...and most defenitely a survivor. It would be great to "get together" sometime and strategize.

    And if anyone would like to contact me directly, you can email me at homeschooltrend@aol.com

    -- Posted by shawna.jones on Fri, Sep 25, 2009, at 12:45 PM
  • Yes, I too was diagnosed with this disease in 2006. This disease cost me my career in Law Enforcement. It is very painful and can be disabling some days and people look at you like you are on drugs or living a hard life. I was medicated heavily for my symptoms and could not do my job properly or safely. Now there are meds that can help with the symptoms of this disease that are not as strong as the older meds. I do believe the disease of Fibromyalgia is not spoken about enough. Some docs still honestly believe this is "all in the persons head" but my body will tell you it's not. Keep up the good work of getting unheard of diseases out in the publics eye so they can be aware of people like us, and to the women and some men that have this horrible painful disease always keep in mind, we can all stand together and help one another. I think a support group would be GREAT!!!!!

    -- Posted by cindyandmarkh on Fri, Sep 25, 2009, at 1:38 PM
  • Thanks for your article. It is good to know that there are others going through the same things I am. I especially am happy to know that others always feel tired from the time you step out of bed. I have always thought that it was just me and not the FMS, or CFS. A local support group would be great and then maybe the local doctors would really take more of an intrest in treating the desease not just the symptoms.

    -- Posted by stephsmom on Fri, Sep 25, 2009, at 1:49 PM
  • Thank you for the compliment,Shawna!

    I know I've felt like a martyr at times but a visionary?

    (Maybe,all those blood and tissue samples were so somebody could put himself through medical school selling relics.)

    This disease does remind one of Alzheimer's or substance abuse.

    While it isn't a money saver in most ways,it can give you a morning after without your having to buy a night before.

    Physical pain,the inability to perform,public opinion,etc. are all part of the struggle.

    Who can "avoid stress" when this disease can take away one's home,livelihood,family and freedom?

    It's not easy to cope when one day you can feel like a rodeo bull raring to escape from the chute and the same week has you sleeping nineteen hours a day just to feel like rancid hamburger.

    One day,you may have a sore throat or stiff shoulder.

    The next,you may be blind or unable to handle food.

    An injury,stroke or the flu can sneak up on you because *everything* feels like part of the chronic disease.

    Most allergy sufferers are told to avoid the offending substance.

    Folks are even urged to give up beloved pets.

    But,it's not an acceptable strategy to jettison your body if you become allergic to yourself.

    I'm glad there are decent meds out there even if they just treat symptoms.

    Right now,this ailment seems to be something you just ride out until it's gone or you are.

    But,new discoveries are making things better everyday.

    (More effective meds,adaptive devices,e-readers,computers,internet,Velcro,Tivo,cell phones and a lot of the innovations on the convenience food,household cleaning and hygiene aisles.)

    A support group could exchange warnings and hints and help the patients and their families maximize their knowledge and quality of life.

    Who knows?

    What we uncover when we pool our information and strengths could defeat the illness before it defeats another person.

    Seriously,I feel humbled and flattered if I seem strong or inspired.

    I owe a lot to the people who've been there for me.

    Even now,I feel bolstered by reading all of you who have posted here.

    I'm sure that the synergy we'll get from combining our inner resources will let us all feel a bit healed and empowered.

    -- Posted by quantumcat on Fri, Sep 25, 2009, at 5:38 PM
  • I am so sorry to hear of your suffering. One of my friends with this disease has noticed a significant change in her health by making a few changes in her diet:

    1. Completely eliminating ARTIFICIAL SWEETNERS and Sodas from her diet. The aspertame in these drinks and many other food items are thought to be linked to the increase in fybromyalgia, Alzheimers and MS. She uses Stevia or honey to sweeten.

    2. She also is taking vitamin E, B complex and probiotics.

    3. She has mostly eliminated caffeine and drinks primarily water, herbal teas, & vegetable juices

    4. She eats dark leafy veggies like kale, spinach, mustard greens, turnip greens & broccoli. She eats lots of fruit.

    5. She gets some kind of exercise or movement every day. I know this is difficult but she tries to take advantage of her "good days."

    6. She keeps a food log to determine what foods or activities seem to trigger her.

    7. She eats very little sugar or "white" processed foods. These empty calories seem to make her feel terrible the next day.


    She and many other women who suffer from this disease are amazing. These changes have really helped her and I hope that some of the changes might be able to help you. Bless you

    Respectfully submitted.

    Tammy Bearden

    -- Posted by tbb61 on Fri, Sep 25, 2009, at 6:28 PM
  • Now,that was some good,practical advice!

    Tammy,I hope your wise friend is liberated from her discomfort soon.

    Having the right kind of friends (as she has) will play a big part in her victory over her disease.

    Swimming,range of motion exercises,lots of green or white tea,acai,herbal tisanes,blueberries,pomegranate,etc. and plenty of complex carbohydrates help.

    A good rule of thumb about food is "forget the twentieth century".

    The simple,whole and unadulterated foods our ancestors ate are fine.

    So are the international and health foods we have access to now.

    Ignore any Bizarro or Franken-vittles that have more nutrition in their packaging than the food.

    Unless you're eating MRE's,a long shelf life is not your friend.

    (If mold and vermin can't survive on it,what makes us think we can?)

    Lots of small,densely nutritional meals are the way to go.

    Luckily,mainstream eating now resembles the ideal diets for cancer,heart disease,dementia and auto-immune disorders.

    Dark chocolate and nuts have come highly recommended.

    Since I found medical articles that prescribed swimming,horseback riding,Marx Brothers' movies,gaming and good,dark chocolate,I started looking for medical trials where they pay you to read mysteries,sf and vampire novels,have spa days,play with puppies and kittens and tour foreign climes with brooding viscounts and rock stars.

    Nowadays,I have a family and the hunks are all younger than my pantyhose,so I guess I'll indulge less with the secret agents,impoverished royals and undead Chippendale dancers and more with kale,endame,agave sweetner and Apples to Apples.

    (It still wouldn't hurt if we could recover AND make some cash from such medical investigations.)

    -- Posted by quantumcat on Fri, Sep 25, 2009, at 9:24 PM
  • quantumcat, thanks for bringing humor back into my days! I especially loved the panty hose comparison...and I too would love a job that paid me to read books and each chocolate, so if you run across such a place, keep me in mind also.

    And Tammy, thank you so much for sharing. This will hopefully be a help to others who read this blog. In my early years of the diagnoses, I used to keep a food log like your friend (I read online somewhere to try it) and it really does help to eliminate things from your diet that affect you negatively and increase foods/drinks/vitamins that affect your body positively. Everyone's metabolic breakdown is different, so what works for one person might not always work for another, but it's great to compare notes and try.

    I think a support blog would be great, so I will be posting a new blog each week entitled "What's new in Fibro-land." It will recap things that I've discovered about this "invisible illness" and I might even talk about how my week went from time to time...but most of all it will be a place where us fellow-fibros--and friends/family of fibros--can chat, vent, share advice, offer support, answer one another's questions, etc.

    An online group for local sufferers and survivors will be great, because we are close enough we can schedule dates to get together and talk--a real-live support group, or just a gathering of friends. But because this affliction makes "getting out" difficult, the online group is perfect. And you can always choose to remain anonymous.

    Let me know if this sounds good ladies, and quantumcat I look forward to you joining in every week...you are such an inspiration, and have so much experience with this condition...and you are so darn funny!

    -- Posted by shawna.jones on Sat, Sep 26, 2009, at 12:09 AM
  • Thanks,Shawna.

    This disease helps one cultivate resourcefulness,tenacity,humility and a sense of humor.

    Without those,you falter very quickly.

    A sense of perspective and the support of understanding,caring people is a Godsend.

    A blog that adds to our information,reduces the isolation (and lets us have some fun) will be a blessing,as well.

    -- Posted by quantumcat on Sat, Sep 26, 2009, at 7:39 AM
  • Thanks for inspiring me to start an online support blog quantumcat...I even made the new blogs "jazzy" to say, "Hey, I'm alive and I am not invisible!"

    -- Posted by shawna.jones on Sun, Sep 27, 2009, at 11:47 PM
  • I was so excited to see this blog.I thoughht"Finally someone who understands"

    Thanks for the awareness..

    -- Posted by Cindy Munsey on Mon, Sep 28, 2009, at 6:30 AM
  • Thanks Cindy. I hope you'll find this to be a comfortable place to come to "vent" among friends...to talk about positive and negative experiences, as the case may be. I've wanted for (for some time now) to find others in our area who share the same common thread--an illness that no one "fully" understands.

    Welcome aboard!

    -- Posted by shawna.jones on Mon, Sep 28, 2009, at 10:10 AM
  • WOW! WOW!

    I have been having problems with chronic pain, neck, back, shoulders, hips, knees, ankles, wrists, IBS, ocular migraines, headaches, sinus headaches, earaches, ad nauseam...oh yes that too. THOSE are just the physical ailments. Psychologically, I am a train wreck.

    I am so pleased that someone else was able to put into words for me the guilt, shame, remorse, whatever, for feeling unable to participate in the world. I am afraid to make friends with people for fear they might want to do something, like go shopping or out for coffee, and I never know when I might be under attack and have to back out. How do you explain this to someone when you do not know yourself? Some days I can barely drive my son to school across town. I can no longer work due to a combination of pain, IBS symptoms, anxiety, panic, and just plain defeat...I cry a lot.

    Yeah, so I am at the age of menopause and had chalked those symptoms up to it; however, I have horrible menstrual cycles still and I with she (my uterus)would just die already!

    Yesterday my doctor mentioned that I probably have Fibromyalgia. He wanted me to try Cymbalta. Part of my pathology is my EXTREME fear of long acting medications and vomiting (yes I do it, but avoid it as much as possible and would never take something that might make me puke). He also suggested a nerve conduction study for my bilateral carpal tunnel syndrome, but when I explained to him that I would not have surgery for a phobia of "going to sleep", he got mad at me and said why bother doing the studies then? HOW WOULD I KNOW??? He was very short with me after that, but did refer me out to an osteopath....

    Came home afterward and was very angry. This hip has been hurting, in the same place, for several years, progressively worse, and like a toothache. Maybe he has never had a toothache. So, if a doctor decides you might have fibro, any ache and pain gets ignored? What about my knee? Could it have hurt to x-ray to double check? And my back? he says if I get shooting pains, then he will x-ray. Well, I do sometimes. I am nearly 50 and have had a rough physical life (accidents, working lifting people, baggage handler, etc.) I am frustrated with him beyond measure. He suggested I see a psychologist for my phobias and anxiety...give me STRENGTH!!! She wants to know if any of my mother's friends molested me...ahem, not to MY RECOLLECTION...but remember, having memory problems so who knows, shall I make something up?

    Once I had a friend with fibro...I was JUDGMENTAL of her fibro...Anna, if you are out there, I cannot even begin to apologize, eat crow, have enough pie on my face and doggie doo on my shoe to make up for that. She never knew it, but I did and I know, and now suffer the same malady.

    Karma...who knows.

    If I were religious, I would pray for acceptance, understanding, and willingness to step out of my fear and take a damned drug!

    -- Posted by matahari on Tue, Sep 29, 2009, at 12:28 PM
  • Matahari--

    Thank you for sharing your experience(s) with us. Sometimes we just need a place to "vent" without judgement and ridicule.

    I may be reading into this wrong, but it sounds like you are not comfortble with your treating doctor? I cannot stress how important it is to have a good relationship with your primary doctor...a connection of sorts. This helps to establish trust and security. After all, you're placing your life/health/well-being into his/her hands.

    If you hurt, tell your doctor. If he/she won't listen, MAKE them listen. And if you can't get them to listen to you--really listen to you, despite your efforts--find someone else. There is nothing worse than having the person you trust your health to make you feel like it is "all in your head," or "all your fault."

    I agree that talking to a therapist--the right therapist--can help many people cope with "illness". I think in many cases it helps, but ONLY if that therapist is willing to put aside predisposition and really listen to you with a clear, open mind. My doctor has never pushed to issue of pyshological therapy, only recommending it in the begging stages of my diagnoses.

    I've created this blog as a form of "therapy" for those not comfortable seeing someone in the field, and for those who do. It's a place to come together and share our stories, experiences, facts, opinions, progress, failures, etc. And here's the best part...there are no co-pays, no appointment needed, and no one is here to judge.

    As for Cymbaltaź, data was presented at the 2007 Congress of the International MYOPAIN Society in Washington, D.C. that suggested that patients with fibromyalgia who were treated with [60mg or 120mg of] Cymbaltaź experienced greater reduction in pain severity beginning just one week after starting the medication.

    I'm willing to try anything once to gain some relief, and I have tried Cymbaltaź. Unfortunately, the side effects I experienced outweighed the benefits from the drug. But I have talked with several other Fibro patients who speak positively of their results. It's worth a try.

    Anyway, I wish you all the best in your continuing journey to wellness. Trust in yourself to make the right choices for you, and be willing to listen with an open-mind to those worth listening to.



    -- Posted by shawna.jones on Tue, Sep 29, 2009, at 2:31 PM
  • SORRY FOR THE TYPOS found in my comment above. I started some new medication yesterday and it affects my vision at times. Anyway, here is the sentence as it should appear:

    "My doctor has never pushed the issue of psychological therapy, only recommending it in the beginning stages of my diagnoses."

    Thanks for bearing with me!

    -- Posted by shawna.jones on Tue, Sep 29, 2009, at 5:52 PM
  • thanks so much for this blog my sister sent it to me to try and help me with my ( FMS ) this has been a real bad week for me,, hate to see cold weather coming make you hurt so bad, been on Lyrica for a while now helps some , no one understands the pain unless they have it also I read every thing I can about

    ( FMS) I have had now for about 5 yr and the pain is a lot worst now , you just go on and then go to bed early , thanks Will look forward to more from this site

    -- Posted by aprince29 on Fri, Oct 16, 2009, at 9:18 PM
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