My Personal Journaling Begins

I’m not a whiner. I’m not a complainer. I’m not a hypochondriac. I’m not a malingerer (just learned about that word thanks to SSI.). I’m not lazy. I’m not a person who likes to find the easy way out. I’m not agoraphobic. I’m not ignorant. I’m not satisfied with my lifestyle. I do have goals. I do want to do more. I do want to work. I do want to be active and pain free. I do want to participate in activities and take care of myself and my home. I am an honest person, with real problems, real pain, and real issues that are not being addressed. I’m a human being that is being tossed about from place to place, being told what I should be able to do, but given no direction or hope and no concrete answers. At times my doctors cannot even look me in the eye; my documented symptoms and journaling is brushed of with an “umhmm” and then I’m dismissed, most often with another white slip for another drug. Not one that will take away any pain, because oh no, can’t have that, we might get ‘addicted’ to any decent painkillers; just glorified aspirin or anti- depressants, so you don’t care if you hurt, just numb you down so you don’t complain about it as much. Four days ago I received my fourteenth prescription. Again, not a pain reliever; an ‘anti- inflammatory’. After typing this much so far my arms are burning so much tears are in my eyes. It hurts so bad I can barely stand it. My Rheumatologist is convinced it’s from ‘lack of use, and after we get you going on cardio that will fix that.’ I could have slugged him. I have disc degeneration in my lower back, which I’m getting an MRI for tomorrow. I have been using my arms as much as possible all during this time, and it is only getting worse; it has noting to do with conditioning.

LAZY? I used to be able to type for 8 hours a day, then come home and work on my own things all afternoon and evening; I’m a published author, and have two more fiction books in the works, a children’s book, and two more non-fiction books. I own and design two full computer domain companies. That’s just on my own. Now that has all been on hold for some time. I used to make jewelry on a regular basis, also a very demanding hand/arm task. I also was a photographer and multi-media artist, who had my own shows, and did special effects and makeup work for movies the year before I got too sick and weak to do anything more. Most of this was all outside of my primary career job as a senior computer helpdesk person solving immediate computer emergencies, also coordinated website development, computer documentation, graphic design, worked with other departments to help train everyone on upcoming new software being implemented, and supply manuals for new software, procedures and emergency manuals. So no, I’m not a malingerer. I’m not lazy. I’ve always had something that interested me, and something to do. People always asked me how I did it all, and I just did what I loved, it didn’t seem like a lot to me. Now it’s a huge event if I’m able to make dinner. Or take a shower. I have to plan the whole day around making it to a doctor’s appointment, since the shower, appointment, and recovery time from that is the entire day. I’m in counseling and working through the grief process for losing my old life, and that has taken a long time. I have worked through quite a bit, but there’s still quite a way to go. So many things still remind me of the things I can’t do anymore.

5/26/03 Matthew has asked me for a few weeks now to add a couple of fields in the database I wrote for him a couple of years ago. I haven’t had the heart to tell him that I don’t recognize what I did. I tried for weeks now to write something, and I have just made myself a nervous wreck trying to figure it out. It reminds me of the time that the guy at Honeywell fell down the stairs and got amnesia losing the last 7 years of his life, and couldn’t figure out what he had done to the network. I finally just told him I couldn’t get it to work, which is true, and he asked me to just add the fields and make it work that way with a calculation. All that should entail is adding two fields, and a simple calculation of taking the total sold price, minus the listing fee, the comission, and the sold fee. I cannot for the life of me get it to work. I’m now on the brink of a migraine, everytime I go in there It just starts to blend together, and the math starts to dribble together. I can hang on to one expression, the x – x, but adding the third number in just makes it all gibberish.

I lost complete track of the tables, forms, queries, and it then fell apart, and now I am trying to just restore it to how it was before I started the whole thing… I’ve worked on this for all day now, between naps. I have nightmares about it. My hands hurt so bad, and my joints are always swollen anyway, this has just made everything worse. Some holiday! I guess it just makes me feel so worthless since I used to be the person to develop huge systems out of these programs, design them to work all together over networks, websites, write the manuals, design the graphics, teach the classes, and then troubleshoot the problem areas. Now I can’t do simple math. This has been happening in so many areas lately, I have been thinking more and more about suicide as a viable option these days. I hate to think that way, since I never used to believe in that sort of thing, but I see it now. I don’t see how anyone can live this way, not only in this kind of pain and regression, but to be so humiliated by doctors that won’t help, and a government that is so cold and uncaring, and friends and family that just don’t seem to care… It’s overall just too much to bear when life itself on a daily basis is so difficult to deal with; and then the fact that you even have to feel guilty or embarassed when you actually may have a good day, it’s just insane. Beginning mid feb 2003 daily:

Symptoms of Headache-free migraine Symptoms list for Headache-free migraine: The list of symptoms mentioned in various sources for Headache-free migraine includes: * Vision problems * Nausea * Vomiting * Constipation * Diarrhea * Body pain - in a particular part of the body * Fever * Dizziness More symptoms of Headache-free migraine: In addition to the above information, to get a full picture of the possible symptoms of this condition and its related conditions, it may be necessary to examine symptoms that may be caused by complications of Headache- free migraine, underlying causes of Headache-free migraine, associated conditions for Headache-free migraine, risk factors for Headache-free migraine, or other related conditions. * headache-free migraine a condition that has no head pain, but has other migraine symptoms, such as visual problems, nausea, vomiting, constipation, or diarrhea. * classic migraines a type of migraine that involves the appearance of neurological symptoms, called an aura (flashing lights or zigzag lines, or temporary loss of vision) 10 to 30 minutes before an attack. Other classic migraine symptoms may include: o difficulty with speech o weakness of an arm or leg o tingling of the face or hands o confusion * Pain associated with classic migraines may be described as: * intense, throbbing, or pounding felt in the forehead, temple, ear, jaw, or around the eye * starting on one side of the head, but may spread to the other side * An attack may last one or two days. * common migraine a type of migraine that is generally not preceded by an aura, although there may be a variety of symptoms prior to its onset. These may include: o mental "fuzziness" o mood changes o fatigue o unusual retention of fluids o diarrhea and increased urination o nausea and vomiting * Common migraine pain may last three or four days. 08-18-03 Bad to Worse.

I thought things would pass.

Now things have gone from bad to worse. I always trusted so deeply in my faith, and the universe, to help me and pull me through problems if I did the work. It worked up until I got sick, and even the Footprints poem can't lift my spirits anymore. The footprints in the sand are gone, it's an empty beach now.

My husband had to leave his second job since he was getting 3 hours of sleep a night, and losing his health. Now my prescription co-pays eat up over one weeks paycheck alone. We missed our second car payment today, and have no way to make our house payment; almost got our electric cut off last week.

My husband is at his wits end with all this, and has indicated this past weekend (not so subtly) that he isn't sure he can do this anymore. I've been sick and unable to function well since about two months before our wedding 2 years ago; so he's had a hard time with this.

I've never been so insecure, unsafe, and alone in my entire life. My family has abandoned me, most of my friends have abandoned me; they ask other people how I'm doing, but never call me or contact me themselves.

I'm doing what I can every waking moment to try and make any money I can over the Internet, but it seems no matter what I touch it turns to crap.

I'm sick of doctors, prescriptions/pills (I have 16 prescriptions) pain, naps, aching, trying to sleep, and wanting to do something then as soon as I get up I have to lay back down.

Asthma, depression, 3 different back problems, upcoming back surgery, rectal bleeding, ER visits, IBS, heartburn, nighttime vomiting and choking, insomnia, migraines 3-4 times a week, highly sensitive fibro points, fogginess, fatigue, etc, etc, etc. But, you know, as the government says, there's nothing wrong with me.

I've applied for SSI but now been denied twice and am waiting for my hearing next year. A lawyer in Jeff's firm is representing me.

My psychiatrist keeps wanting to put me on higher meds, but that really isn't possible, I said any healthy normal person in my situation would be reacting this way, I just don't think I'm acting out of the ordinary!

Over the weekend and today I feel like I need to leave the planet, just be done here. Not suicidal at all, just wanting to be done here. I just don't want to play this game anymore. I'm done, I accept that I lose, and I just want to go home now. I raised my kids, did what I needed to do, and now I just want to be done with the pain, the hurt, the ache, the fight, and the anger and loneliness. I get so angry about so many people that have so much and misuse it, or have so much and complain about petty things. All I want is to have enough to live, keep my house and car, make my business work, do any kind of work that I can, and help my children, but now I just feel like a waste of useless skin that is just taking up space and hurting people, being in the way.

SO, as I said, I used to think this will pass, it was my mantra for so long, but somewhere along the line I realized that there is no rule that says it has to pass. Not for me anyway.

I ask for motivation, help, inspiration and anything I can think of, but all I hear from everyone is "I wish there was something I could do," as they leave and go on with their life.

Vanessa

08-17-03 Time to Leave the Planet.

This morning started out feeling that it was time to leave the planet; not for any particular reason, I just wanted to be done. Every day is just another struggle, and just one more day that reminds me that I'm getting nowhere.

We went out to breakfast this morning, our once a week 'treat', and now that my back injections are wearing off I'm back to having to sit sideways in the chair with my leg up on another chair just to make it through the meal. I took a pain killer, but it didn't kick in until after the meal.

After getting home had to take a nap, the outing just wore me out. We hadn't gone in several weeks since I've been having the abdominal episodes, so this was our first outing in about a month.

I woke up around 1, when E came over, and chatted for a few hours. Still can't seem to wake up; today is a terrible foggy day, but one bright spot is no gastric bleeding today. So far.

Evening brings heartburn, aching, more fog, dizziness, and television to take my mind off things. I hate commercials.

I have soooooo many things that need to be done. Ebay listings, web stuff, body care products to make, house cleaning that should be done (LOL) (as if that'll get done by me!) but all I can do is lay here and pick at my fingers in anxiety.

It's the 17th, and tomorrow will be the second car payment we can't make. Will they be taking the car back anytime soon? Will any of the house payment get made this month? Will we still have phone or electric by the first? I f&^%ing HATE living this way.

Everyone I know says 'but you're so talented! you should be rich by now, with your book, your photography, jewelry, art, etc...' but I'm not! I have no idea how to make those kind of sales, and how to promote myself. I don't have the energy to do so much anymore.

I don't know why I'm not rich. Maybe I'm just an idiot. Maybe I need an agent. I should be doing psychic readings all the time, but I don't like advertising; I want people who need me to find me. Anybody out there want to be my agent???

Last week I received my 16th prescription. My insides are on fire most of the time, I can't think straight, and my drymouth feels like I have my tongue in a sock. I wake up choking and gagging, vomiting into my sinuses. My husband went downstairs to get my inhaler last night, and I thanked him, he said he did it for himself too, not just for me.

over 1 entire week's pay each month goes for my prescription co-pays alone. I can only dream of the day that I can go grocery shopping again and actually just buy groceries like I used to; just get a good weeks groceries.

I can't even talk to people about things anymore, so I just don't talk to anyone; all I hear is 'I wish there was something I could do...'. Well there isn't, unless you have a connection with the SSI to push through my disability claim that's been denied two times and is now waiting until summer of 2004 for a hearing, or you have 10 grand just laying around that you don't need, or know of some large store that wants to buy our product line and keep us working for the next 6 months.

And that's the biggest thing!!! I don't want to live off SSDI!! I would love to work! If someone would hire me to do graphic work or typing at my own speed, something I can do, I'd work 12 hours a day. I work all the time when I'm able to. I can't stand just laying around doing nothing; but there's no kind of job I can do, and the department that finds jobs for people with special needs won't help me until I'm legally declared disabled by 'the government', catch-22.... etc..... ARGHHHH!!!!!!!

I looked through the newspaper online for classified jobs, but they all expect you to actually come in and apply, and then- go figure- work at their place of business. I cried for a while, feeling totally useless, and then husband had to talk me out of feeling like I was a waste of skin. Then he had to go to work.

Now I'm sitting here at night alone, watching (suprise!) television, feeling terrible, knowing that tomorrow I'll get more calls from people wanting money, feel like I'm getting nowhere, look for ways to find money I need, get nowhere, cry some more, and my big goal for the day will be to stay awake all day; if I'm really lucky the UPS man might deliver a package of samples that I've ordered.

I really did have a life once. A lifetime ago last year or the year before.

7-2-04 Still no money coming in, although I did have my hearing April 19, and got my approval letter on May 11. I’m supposed to start getting some money on the 21st, which I’m almost sure will happen, but I’m still not holding my breath. The big chunk is eta September, as well as the SSI back pay, and some other back pays. We’re going to be really comfortable in September! I thought we should have a second wedding, like Sept.12 when we really celebrate. Then our trip in October can be a honeymoon. To start our real marriage.

Dr. trott John q Kelly coming to visit 7-3-04

Miracle of miracle, today we got our first actual check from anywhere. Walgreens was supposed to track back and refund all the co-pays we had from april-02 through to the present. That was a fiasco of it’s own, but another story. The amount we calculated was aproximately 1600, since we had been paying about 260 per month for two years.

THE FUCKING CHECK WAS FOR $96 DOLLARS!!!!!!!!!!!!!!!!

What the Hell??????? Can’t anything just work right???? What is the matter with these fucking idiots?? I sent all the paperwork in correctly, and now I have to call and “appeal” again, of course, which will probably take another 8-10 weeks. $96 dollars didn’t even refund one month of our co-pays!!! This is insanity, and Matthew is going to flip!!!

I’m just astounded. I’m shocked, amazed and not the leaset bit surprised. Plus the bonus, it came on Saturday of course, so I can’t call and get the person on the line and argue it until Monday.

And you KNOW their going to have their complete reasoning, and everything governmental to back it up, and we will be totally screwed, and they’ll be completely shocked that we aren’t throwing ourselves at their feet in thanks for the 96 dollars.

And when it comes right down to it, after all the calling, after all the tears and anger, after all the fighting and tracing and hours of work again, it’ll be bend over and take it up the ass. I’m running out of vaseline.

Oh yeah. Tuesday. Monday’s a holiday. Fuck.

It’s not so much that, it’s just that it seem’s like an indicator of things to come, and I just don’t like it. Subject Start Date tarlano-individual pain mgmt 4/2/03 jill-physical therapy 4/7/03 cindy-counseling 4/7/03 tarlano-individual pain mgmt 4/9/03 jill-physical therapy 4/14/03 lamboy-acupuncture 4/18/03 jill-physical therapy 4/21/03 cindy-counseling 4/21/03 lamboy-acupuncture 4/25/03 cindy-counseling 4/28/03 jill-physical therapy 4/30/03 lamboy-acupuncture 5/2/03 jill-physical therapy 5/5/03 cindy-counseling 5/5/03 lamboy-acupuncture 5/16/03 cindy-counseling 5/19/03 fiocco - eval & mgmt 5/20/03 krk-eval & mgmt 5/22/03 lamboy-acupuncture 5/23/03 broderick-med check 5/27/03 jill-physical therapy 5/28/03 cindy-counseling 6/2/03 angela-county visit 6/5/03 back injections 7/16/03 expl. diahrea 7/16/03 extreme flare up 7/16/03 extreme anxiety 7/16/03 very itchy wrists/forearm rash in evening 7/16/03 cramping/aching across mid/back and lower back (tailbone region). 7/16/03 expl. diahrea 7/17/03 extreme flare up 7/17/03 extreme anxiety 7/17/03 very itchy wrists/forearm rash in evening 7/17/03 cramping/aching across mid/back and lower back (tailbone region). 7/17/03 expl. diahrea 7/18/03 asthma attack 7/18/03 extreme anxiety 7/18/03 very itchy wrists/forearm rash in evening 7/18/03 cramping/aching across mid/back and lower back (tailbone region). 7/18/03 expl. diahrea 7/19/03 migraine 7/19/03 extreme anxiety 7/19/03 very itchy wrists/forearm rash in evening 7/19/03 cramping/aching across mid/back and lower back (tailbone region). 7/19/03 extreme anxiety 7/20/03 very itchy wrists/forearm rash in evening 7/20/03 expl. diahrea 7/20/03 cramping/aching across mid/back and lower back (tailbone region). 7/20/03 asthma attack 7/21/03 pain across lower back into hip7/21/03 extreme flare up 7/21/03 extreme anxiety 7/21/03 acupuncture 7/22/03 migraine 7/22/03 extreme anxiety 7/22/03 very itchy wrists/forearm rash in evening 7/22/03 expl. diahrea 7/22/03 migraine 7/23/03 extreme flare up 7/23/03 asthma attack 7/23/03 extreme anxiety 7/23/03 very itchy wrists/forearm rash in evening 7/23/03 expl. diahrea 7/23/03 cramping/aching across mid/back and lower back (tailbone region). 7/23/03 cont w/ bleed & expl diar later in day... 7/24/03 extreme flare up 7/24/03 extreme anxiety 7/24/03 extreme anxiety 7/24/03 very itchy wrists/forearm rash in evening 7/24/03 expl. diahrea 7/24/03 cramping/aching across mid/back and lower back (tailbone region). 7/24/03 acupuncture 7/25/03 psych appt 8/13/03 5th floor clinic - 2 hr appt 8/22/03 acupuncture 8/22/03 dentist 8/25/03 cindy 8/25/03 dentist (unfinished) 9/8/03 acupuncture 9/19/03 migraine 9/20/03 fiocco 9/22/03 hutter 9/25/03 Dr Brauer 9/26/03 pre-op 10/3/03 PHYSICAL W/kATIE10/7/03 possible surgery date 10/8/03 caren witt 10/22/03 appt with lorna neurosurgery 10/22/03 send in card to joan from cpap machine10/29/03 mammography 10/29/03 call dr kothari re: aproval of surgery 11/4/03 trott 11/12/03 Scott Thom Operations & Photo 11/12/03 dr davis 12/1/03 rick boortz-marx - 3rd fl east building 12/3/03 scott tyink 12/12/03 dr kotnour 12/18/03 HUTTER: 1:40 12/18/03 MASSAGE 12/23/03 ANGELA 12/23/03 DR MARX-BORTZ 12/30/03 FMS Information Resource Guide Fibromyalgia Syndrome (FMs) Disability Checklist The primary keys to receiving the disability benefits you deserve are documentation and persistence. Use the information on this page to prepare for the "David versus Goliath" struggle you may experience. Specific History Letter Create a 3 - 4 page letter containing medical history of all symptoms you have. Points to include are: 1. Doctor's diagnosis 2. Any specialist seen 3. Major tests done/to do 4. Date illness started - symptoms traced back as far as 1989. Symptoms have progressed over the years to the point in Oct 2001 patient was unable to hold her job any longer. 5. Describe a typical day/night 6. Medications taken, or currently using : Advair 250 albuterol rescue inhaler as needed (daily) wellbutrin 300mg a day effexor 300 mg a day darvocet as needed (2-3 a day) clop? as needed (1-2 a day) toprol daily amatryptaline maxalt as needed, two prescriptions to work with insurance limitations flexeral as needed allegra (tried, didn't work) flonase (helps on occassion) eyedrops (different types prescribed, didn't work ) eye scrubs (helps the crust buildup)

7. What happens when you try to do various mental or physical activities, how many hours or days you may need to recover : activity recovery showering 1 hour resting load of dishes 1-2 hours resting short shopping trip up to 1 day vacuuming 1 hour helping with fall yard cleanup 2 complete days cooking 1-2 hours sitting 1 hour 1-2 hours

8. Main disabilities; effects severity hindrance how you deal with it pain irritable, drugged, unable to get comfortable, especially when trying to sleep pain is constant through the day and night, varying from mild to unbearable keeps me from moving, thinking, enjoying any sort of normal life; unable to do necessary household activities; they have to be done by husband (housecleaning, laundry, bills, etc) drugs, rest, relying on others to do things for me migraines traditional severe migraine symptoms 5-6 per month unable to function in any way, retreat into dark room and family stays quiet and takes care of things used to be a 3 day ordeal; with the help of maxalt, the course of the migraine can last from 24-36 hours, and takes the edge off the sensitivity to light and noise, and nausea. nightly sleep dysfunction and disturbance disrupted sleep, 6-8 times per night; distrupts husband; he will massage me during the night occassionally to help. Absolutely nightly, increasing In severity for past 8 years. disrupts sleep, no restful sleep, problems during the day with exhaustion amitryptaline, other sleep drugs, problems can occur still, and much worse after drug wears off.

Depresion/Anxiety antisocial behavior, avoidance, agorophobic tendencies, suicidal thoughts, panic disorders, self degradating behavior, mood swings, missing and cancelling appointments; eating disorder Daily, severity of type varies but not on any trackable schedule; more severe over the years even with counselling and medication treatments. Avoid People, crying uncontrollably many times a week, inconsoleable; unable to figure out what's wrong; self hatred, strain on marriage (and with children), Don't feel like doing anything, many necessary activities have to be done by husband (housecleaning, laundry, bills, etc) medication, avoid social situations, not answering phone, crying, comfort foods.

Fatigue and exhaustion increase in foggy thinking, living in a 'fog', severe forgetfulness; unable to do simple math without the aid of calculators, forget conversations just had Daily. impaired judgement, unable to drive, unable to carry out any tasks that require detail (I have sent out packages with only partial addresses); leaving burners on remind people I will not remember what they said; keeping a pen and paper nearby to try to keep notes, sister helps remind me of appointments, husband reminds me about daily routines. pain: 9. Where you have lived 10. Family situation - children have all moved to Phoenix, live alone with current husband. 11. Financial problems had to file bankruptcy, near losing home, unable to lead a basic enjoyable life; constant stress about how we will live over the next month. Income is below poverty level. 12. Housing situation Own home for the time being. 13. Job and education history 14. Recreational activities, before and after illness Before: Shopping, cleaning home, artwork, Medieval events, farmer's markets booths, working, walking for pleasure, sewing, beadwork, painting, photography, local events (organizing and attending), social outings, movies, dinners, parties, etc., working on websites, teaching local classes, graphic arts, mixed media, art shows, sculpture, writing and publishing books. After: occassional short term art work (1-2 times month), occassional friend will come over to visit. Husband does all housework and shopping. 15. What are you doing to try to get better : Physical Therapy, Pool Therapy (on hold since I cannot afford the co-pays), drug treatments, attempted walking therapy, massage, reiki, sacral and zone work, meditation, networking via internet with others who suffer with this, writing, scheduling sleep study to see if I can help the sleeping, would like to get pad for bed recommended for sleeping better without the pain; hot baths and showers when I can stand it; some forms of yoga, 16. State that the illness is severe and pro-longed The illness is prolonged, and I have had these increasing symptoms over 14 years at least, increasing to inability to work in 10/2001, and still progressing to increasingly worse symptoms. 17. State that you cannot do ANY job There is no job I can do. There is no ability to be relied on for attendance, ability to perform basic functions due to the combination of symptoms. Pain, headaches, depression, are a daily occurrence, and just making it through the day to bed time is exhausting. 18. What reduction in work? (eg 90%) 100% inability to hold any job.

Ensure the earliest date of disability is put down by your doctor - the year and month that any amount of impairment started. This can then be used to back-date many benefits (eg Disability Tax Credit if available). Conclusion: By taking these rigorous, but necessary steps, Fibromyalgia Syndrome patients partially protect themselves from the exasperating process of disability benefit claims. Documention and persistence pays off in the long run. What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment that can Reverse the Disease by R. Paul St. Amand, M.D. and Claudia Craig Marek, M.D. Having fibromyalgia means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about (this illness) and its effects, and of those that think they know, many are actually misinformed. —J. M., Texas It can start off quite subtly: a bit of muscle pain, along with some generalized aches and stiffness. Then there are periods when concentration is impossible, a day or two of overwhelming fatigue, and maybe a little dizziness, cramps, and diarrhea. Symptoms come and go at first, and it's easy to chalk them up to a mild case of flu that never quite localizes, to overexertion and too much stress in your life. Then, one day, you realize it hasn't gone away—it never goes away anymore. One part or another of your body always hurts. You feel stressed and irritable all of the time. You wake up tired every morning. In short, you haven't felt "right" in a long time. The symptoms begin to worsen, and you notice new ones. Perhaps depression, numbness and tingling of the hands, leg cramps, stiffness, headaches, or bladder infections. Often you can no longer sleep through the night. Sometimes it's pain that keeps you awake; sometimes you don't know what it is that keeps you from falling asleep. When you do sleep, you wake up tired and unrefreshed. You crave sugar or other carbohydrates, and if you give in to this craving, you tend to gain weight and feel even worse. Then, before you know it, bad days outweigh the good ones, and eventually there are no good days, just ones that range from bad to worse. It feels like coming down with the flu, yet it never manifests fully. It's like being fluish, achy and tired, and embarrassed and discouraged about it because you don't know why or what you can do to make it better or what you did to make it worse. Everyone gives advice but they don't have a clue as to what it's really like. Having people tell you to eat differently and exercise more and not focus on your health makes you just want to isolate yourself because you've already experimented with every possible food plan, supplement, and idea. —Miki K., Hawaii You become increasingly immobile. Gradually and without realizing it at first, you stop making plans because you never know how you will feel, and you become mostly housebound or bedridden. The simple task of going to the supermarket can be an impossible chore. By now you have visited doctors of various specialties in the hope that one of them will be able to tell you what's wrong and set things right. When the pain is bad, you seek out chiropractors and massage therapists, and maybe you try acupuncture and alternative treatments like herbs or homeopathy. You have had many diagnostic tests run, costing hundreds, perhaps even thousands of dollars. Your friends have offered you a lot of advice about vitamins and nutritional supplements that have helped them or someone they know. But you are already taking a regimen of vitamins, minerals, and enzymes, and you do not feel much better. You may have heard the word "fibromyalgia," and maybe you know whether or not you have it. No one has told you how to treat your disease, although they have many ideas about how to ease your symptoms. Your life has entered a downward spiral of pain, depression, and fatigue. You have a great deal of guilt about not being the person you used to be. Unless you are blessed with an exceptional companion, your personal relationships have suffered or completely fallen apart. You worry about your ability to care for your children. You may even contemplate suicide. It feels like everyone around me is normal and happy and having a good time and I'm so different. I want to have a few normal days. I don't fit in anywhere because no one understands. People laugh and say "You look fine" but I'm dying inside and I can't explain it to them. I'm so tired of pretending I'm okay when I want to scream. I have kept a positive attitude for so long but it's exhausting and I just can't do it anymore. I wish I could just go away somewhere and hide. —Susie This is an oversimplified picture of what it's like to have fibromyalgia. Those of you who have it know that it is far more involved than this. I know what you're going through. I am intimately familiar with the personal struggles that each and every one of you has experienced with this illness either as sufferers or as their supporters. I have lived with your pain, your fatigue, and your despair. I have spent my entire medical career treating patients with symptoms such as these and more. Headaches, jaw and facial pain, abdominal discomfort, dizziness, memory lapses, vulvar and bladder pain, itching and rashes, all plague fibromyalgics. Until recently, doctors told patients like you that your illness was due to "nerves." And, to underscore this diagnosis, patients were reminded that the pages and pages of tests run on them had shown "nothing wrong." Fibromyalgia is prevalent in all ethnic groups in all parts of the world. In North America, it is estimated that about five percent of the adult population suffers from this disease, although I believe the actual rate is higher. Conservatively then, some twenty million Americans suffer from fibromyalgia and its related disorders—most are women, with the ratio of women to men at about five to one. There is some evidence, mostly anecdotal, that this statistic may be skewed due to the fact that men are often either misdiagnosed or less likely to visit a doctor. Rheumatologists say fibromyalgia is the most common disorder they see. Another twenty-five million people suffer from chronic fatigue syndrome, which I (and most other physicians) believe is the same disease. I have good reasons to conclude through my work that today's fibromyalgia is the prelude to tomorrow's osteoarthritis that afflicts another thirty-five million people. Adding these numbers would suggest that one third of our population will suffer with some of the symptoms of fibromyalgia at some point in their lives. And this does not include those who have been diagnosed with other "syndromes," such as myofascial pain, chronic candidiasis, vulvar pain, irritable bowel and irritable bladder, and so on—who in all probability have fibromyalgia as well. My rheumatologist told me I was too old to have FMS. At that time I was fifty-four, never mind the fact I had had symptoms most of my life. The disease had become "full blown" when I was about fifty-one. . . . After another year of suffering, I diagnosed myself via the Net. My DO (Doctor of Osteopathy) sent me back to the same rheumatologist because he is the only board-certified one in our area. At that time he told me I was too old to have FMS but even if I did there was nothing that could be done. . . . I have since been diagnosed with FMS by three other doctors, all of whom have told me the only thing they could do was treat my symptoms. I was as good as I would ever be and would get much worse. —Betty, Texas "Rheumatism with painful hard places" which can be felt in various locations on the body is considered the first description of fibromyalgia in modern medical texts, by a doctor named Froriep in 1843. "Fibromyalgia," a Greek word meaning pain in the muscles, has now all but erased fibrositis and rheumatism as the name of this disease. On New Year's Day 1993, fibromyalgia was officially declared a syndrome by the World Health Organization (WHO) in the Copenhagen Declaration. It was declared the most common cause of widespread chronic muscle pain. As a new entry in the ICD code (International Statistical Classification of Diseases and Related Health Problems) it became an official diagnosis that, among other things, a doctor could use to bill insurance companies and to label a patient disabled. The WHO decided to incorporate into the definition of the disease the American College of Rheumatology's 1990 definition penned by Drs. Muhammed Yunus, Hugh Smythe, and Frederick Wolfe. This had carefully detailed the location of eighteen tender points symmetrically located around the human body. The presence of at least eleven out of eighteen of these was considered the gold standard for diagnosis, along with muscle pain. But the World Health Organization went a little farther. The Copenhagen Declaration added: "Fibromyalgia is part of a wider syndrome encompassing headaches, irritable bladder, dysmenorrhea, cold sensitivity, Reynaud's phenomenon, restless legs, atypical patterns of numbness and tingling, exercise intolerance, and complaints of weakness." It also recognized that patients are often depressed. Today, thousands of medical articles later, fibromyalgia is almost universally recognized as a distinct illness. Sadly, there remain a few doctors who still try to tell patients it is simply a catchall name for a collection of symptoms shared by a group of neurotic women, but luckily they are increasingly rare. Despite so many articles and so much speculation, much of fibromyalgia remains poorly understood. It is a complex and chronic disease that causes widespread pain and profound fatigue—accompanied by a range of symptoms that make simple, everyday tasks daunting, difficult, and sometimes even impossible. Once upon a time, a lifetime ago, I was a gymnast, played in tennis leagues, golfed, played on a softball team, and panned for gold in the Colorado mountains. . . . Now I am lucky if I can walk to my mailbox—usually I have to drive. If I can make the stairs, I go down to check on the laundry situation, or go upstairs to see if the dust has carried away the entire floor. —Gloria Symptoms affect widely disparate parts of the body. Doctors don't always realize that tenderness in the neck area, frequent bladder infections, and brittle nails, for example, are symptoms of the same illness. Patients, often young women, look "well" and many have learned to put up a façade in the workplace or with friends. A growing number of people have now heard of fibromyalgia and know someone who has it. Lists are available that detail the multiple symptoms of the disease, but it remains a phantom illness that has few concrete findings to the casual examiner. It still lacks a laboratory test to confirm its existence, and no scans or X rays can detect it. For these reasons, fibromyalgia is often described as an "invisible disability." Yet a well-conducted history will unveil the chronology of the cyclic symptoms that point to a diagnosis. This is easily confirmed by the many abnormalities in muscles, tendons, and ligaments revealed by a detailed examination. Some doctors enjoy semantics and argue whether this is a syndrome or a true disease. "Disease" is exactly that: lack of ease, and fibromyalgics are certainly qualified to wear that name. Symptoms and findings that regularly appear together in a number of patients are grouped as a "syndrome." Congratulations! Fibromyalgia is that, too. The painful areas of tenderness are often superimposed at the sites of previous injuries or surgery, so some believe that it is caused by trauma. We believe that there are good scientific reasons why this should be, but we also believe the disease-syndrome is inherited. Since eighty-five percent of fibromyalgia patients are women, at least one gene is undoubtedly on the X chromosome. But there must be more than one gene involved, since we have seen the illness begin as early as the age of four and as late as the age of seventy-four. That spread would be impossible to explain with only one defective gene. There is no doubt in my mind that there is a genetic predisposition to FMS. My eighty- six-year-old father has had it since my teen years. My mother recently told me when I asked about his leg pain that the doctor said years ago that there were lumps in his legs. —M. Bush, Alabama Although fibromyalgia is not a terminal illness, it is a demoralizing and debilitating one. The symptoms can be unbearable—so unbearable that the so-called "Suicide Doctor," Dr. Kevorkian, has helped several fibromyalgia patients end their suffering. In 1997, one of these fibromyalgics was forty-year-old Janis Murphy. After her death, her father spoke out about his daughter's condition. "Over the years, I've seen my daughter experience intractable and unrelenting pain." He hated losing his only child, but "there are things in this world worse than death." The currently accepted method for helping fibromyalgics is to recommend exercise (knowing the patient can't do it) and to employ a war chest full of chemical Band-Aids used simply to palliate the lengthening litany of symptoms. Medical professionals unwittingly promote increasing disability when they prescribe ever-stronger medications that, sooner or later, deplete energy even further and deepen the mental haze. Along with the failure of exercise programs, massage, and physiotherapy, patients accept their lot and become victims of their disease. To make bad matters even worse, long-term disability insurance companies have now entered the fibromyalgia fray and help to confound progress. It is to their advantage to insist that the disease and all of its variations stem from psychiatric disorders. They often have no difficulty in finding a psychiatrist who will agree. Since the vast majority of insurance policies do not cover mental disability beyond a specified time, there is a great deal of money at stake. Fibromyalgia cases have reached near epidemic proportions in the form of U.S. Social Security disability claims, workers' compensations, and accident litigation. As many as twenty-five percent of American fibromyalgia patients have received some form of disability or injury compensation. We are first to agree that the country can ill afford to swell these ranks. But we cannot turn our back on very real suffering, either. Although there is no consensus as to the source of the disease, I postulate throughout this book, hopefully in simple enough terms, that it is caused by an abnormality in phosphate excretion. As I have already suggested, this inherited problem appears to me to be due to a genetic defect. Retention of phosphates eventually interferes with energy formation in affected cells. Patients describe their lack of energy, and cellular metabolism confirms it. If there is insufficient energy, "nothing works right"—the very complaint of the fibromyalgic. Pick a cell, any cell, from a system that bothers you, strip it of its energy, and you won't find it hard to explain why the brain, muscles, tendons, ligaments, intestine, urinary tract, and skin have joined in an act of biochemical vandalism. Fibromyalgia is a nearly total, systemwide illness in most patients. The seemingly unconnected shifts in complaints confuses physicians, who respond by referring patients to another doctor who knows more about the "new" symptom. In the process, patients often receive a sort of medical education as they move from specialist to specialist. Physicians are well intentioned, dedicated, and skillfully trained in trying to find ways to help their patients. I assure you that they are frequently frustrated and stymied by the difficulties fibromyalgia presents. And then, the consensus among most of my colleagues is that fibromyalgia is incurable. This makes it acceptable to relieve symptoms by reliance on medications such as NSAIDs (nonsteroidal anti-inflammatory drugs), narcotics, analgesics, and mood-altering drugs. This polypharmacy often complicates the patient's condition by further depressing the central nervous system, causing more fatigue and mental confusion. The result is that patients are even less able to control their lives than they were before treatment. In my years as an internist and endocrinologist, I have devoted much of my career to the diagnosis and treatment of this disease. I have found that I was not geared for the tribulations of having a private medical practice. I tried to pace myself and relax as best I could. It was only after I began treating patients with the disease that was later to be called fibromyalgia that I realized that I shared their misery, and began to treat myself. Over the years I have explored the many facets of this illness mainly through observation and the compilation of data from my patient-teachers. They willingly joined me in our trial-and-error approach that lacked any other scientific credentials. It has taken many years for me to reasonably grasp the full extent of this illness and to comprehend just how insidious it can be. I have used several different drugs to treat fibromyalgia. In the past I used exclusively gout medications and, though effective, each had certain side effects which left in limbo a small group of patients who could not tolerate them. In 1992, the continuing search led me to guaifenesin, a widely available medication. It has no known side effects, is well tolerated, and has no remaining patent and is therefore inexpensive. I have used guaifenesin to develop a treatment protocol that addresses the actual disturbance caused by our defective genes, not merely its symptoms. This book is the culmination of nearly four decades of research. I have treated thousands of patients who have traveled from all over the world seeking relief from this enervating disease. With treatment, the symptoms and pain reverse and disappear completely in most patients. Other patients resume normal lives with minimal residual problems. This is not to say that recovery occurs immediately. Not only is it necessary to find the effective dosage of guaifenesin, there are also other crucial factors that influence the outcome of my treatment. Briefly, in order for guaifenesin to work, it must have unrestricted access to receptors in the kidneys, the little garages where the medication must park if it is going to work. Many ingredients in the products we use every day—lipsticks, muscle balms, nutritional and herbal supplements, cosmetics, toothpastes, and sunscreens—are chemicals known as "salicylates." These totally block the guaifenesin's access to the renal receptors where it works. When this access is blocked, none of the drugs we use are of any benefit whatsoever. Thus salicylates must be carefully avoided. It also must be understood that approximately forty percent of female fibromyalgics have hypoglycemia, or low blood sugar, and symptoms overlap those of fibromyalgia. To be successful, treatment must address both conditions simultaneously. If this connection is overlooked and the patient fails to make the necessary dietary adjustments, the symptoms of hypoglycemia remain. For these reasons, my protocol, as laid out in this book, should be followed very carefully in order to achieve positive results. Despite the need to watch carefully for blockers, there is no treatment currently available that is as safe or has enjoyed such a high level of success. In succeeding chapters of this book, I will discuss all of the important factors a patient must address to successfully treat fibromyalgia, as well as share my knowledge of the disease itself. Guaifenesin is so safe that it is an ingredient in many over-the-counter cold and allergy medicines. It should be taken daily and in an appropriate dosage. Patients of any age can follow the protocol, which is designed to reverse fibromyalgia in less time than it took to develop. This book will also discuss some coping strategies. There is no question that the unrelenting nature of the disease, the cognitive losses, the fatigue, and the pains are certainly reason enough to induce depression and even suicidal thoughts. To cope with this horrible disease, patients do need more than a pill and the instructions about how to take it. The guaifenesin approach to fibromyalgia is not well known or currently widely accepted. Since we have been unable to publish in medical journals, its fame derives entirely from grassroots support and the militancy of the patients it has helped. The list of physicians all over the country who use and support our protocol has grown to about two hundred. Many more are allowing patients to use the drug, as we constantly learn from our e-mail postings and letters from all over the world. We have spoken to hundreds of doctors who have called our office. Many more have written for information. My coauthor and I have spoken to groups in many parts of the country and have delivered our message about the success of guaifenesin to anyone who will listen. This book is, to us, merely a means to help many more people than we could ever hope to do in person. There is no doubt whatsoever that guaifenesin is highly effective as long as users exercise care in following our instructions. To the guai army: this treatment will go forth into the world as long as we keep standing our ground. Guai works! Each time a doctor becomes convinced of the effectiveness of guaifenesin, he will spread the word to his other patients and their families. We began as a small voice crying in the night. Each day we are getting louder through the strength of our numbers. Our family grows and the world is a better place. —Kathy Shuller, Florida We also know that each patient must take charge of his or her own illness. Physicians will continue having difficulty coping with the many hidden sources of salicylates. It is hardly their job to walk around cosmetic counters reading labels with a magnifying glass as we have done. That task will continue to be the patient's problem. It is also the patient's responsibility to adhere to the hypoglycemia diet, if that is necessary. Cheating on the diet will harm not only you, but also affects the assessment of the doctor who is watching you for positive results—and all the other patients who rely on his or her knowledge. The fact that you are reading this book says a lot. You are still motivated to try. You have already overpaid your dues, and we aim to help you restore your health. I began noticeable symptoms of fibromyalgia in July 1990. . . . My symptoms began as burning on the bottoms of my feet and then within months progressed to my ankles, legs, hips, and lower back. I began to get such symptoms as headaches, muscle spasms, fatigue, and others. After seeing about twenty different doctors, no help was found, and it was said that the pain was all in my head. I was harassed into leaving my job because I had not been coming to work off and on for a year and a half. . . . Then, in July of 1993 . . . I began taking guaifenesin. . . . In the first week or two, I had had some terribly painful days. But gradually they got less and less painful and I began seeing a good day here and there. My "good" days became more and more frequent. I am currently about ninety- percent improved from using the guaifenesin treatment for four years. —Nancy Medeiros, Escondido, CA I invite all fibromyalgia sufferers to embark upon a journey to improved health. Let us be your tour directors. We are passionate about providing you with the information you need to regain your vitality. Realize up front that this journey is not for the faint of heart. For most of you, the road back to good health will seem long, with days of pain and discomfort. In the beginning, this may be more severe than what you have suffered to date. Guaifenesin treatment flushes metabolic debris out of the body, and while this occurs, your pain will probably increase. Gradually you will notice that the days of pain and fatigue diminish, and good hours will eventually be followed by great days. You will bounce back again with energy after an illness, injury, or hard work, as you once did. You will be delighted that you can participate in activities with a strength that has eluded you for years. By following my treatment regimen to the letter, along with your doctor's advice, this is within your reach, and you can once again live life to its fullest. My ultimate goal is to ease the suffering and pain associated with this illness and, through this book, I hope to reach as many of you as possible with a viable and effective treatment solution. The best definition of happiness I have ever heard was: "Happiness is freedom from pain." Wipe out mental anguish as well as physical pain, and life is a joy. © 1999 by R. Paul St. Armand, M.D. and Claudia Craig Marek Excerpt posted with permission from http://www.twbookmark.com

Living with FMS (Fibromyalgia Syndrome) http://www.tidalweb.com/fms/

Letter to people without FMS and/or MPS:

Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS/MPS and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

- Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

- Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. - Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what FMS/MPS does to you.

- Please understand that FMS/MPS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

- Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

- Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.

- If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would KNOW.

- If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me then I might not get to see you.

... and, as much as it's possible, I need you to understand me.

This is based on an open letter created by Bek Oberin, and has been modified for FMS/MPS.

If you have any comments or suggestions, please email: [email protected]

DISCLAIMER: "The materials and information on this server are intended to provide general information for you. Please consult your physician on specific medical questions. Do not use the information given on these pages as a substitute for a physician consultation. All information on this server is provided without warranty of any kind. Further, we do not warrant, guarantee, or make any representations regarding the use, or the results in terms of correctness, accuracy, reliability, currentness, or otherwise." I wish I could ~ ------curl my hair, shampoo with my eyes closed, finish all those sewing projects tht are started, pull the weeds in teh front flowerbeds, sow the grass in the side/back yard spaces. I wish that the paperwork weren't so overwhelming, that I could find the old me that never procrastinated with anything ever, the me that used to have hot breakfast and dinner everyday for my family and never ever let my home get out of control. Why do lots of words scare me, why forms and appointments send me into a panic. Why when I seem to be having a "good" day, do I still have trouble with balance if I stand too long. I took the bus today, to Wal-Mart a total distance of 15 minutes by car, but an hour by bus...and of course an hour back....and had to be shopping about an hour imbetween buses...sat down for a little bit, but that hurt too. I don't understand why a successful store like Wal-Mart has such crummy auto chairs....all of this stores had "out of order" signs on them. Whatever happened to that part of me that could take off the weight just by exercising and food contol? Why do my hands hurt, my foot never quit hurting, all 18 points talking/screaming at the same time....why do I not want my grandkids over all the time anymore, adn for heaven's sakes, why is sleeping so important....oh yes, my Docs say it is all the fat that hangs off me....well, aren't they the ones to talk....prednizone.? tons of prednizone - and always feeling hungry...and if I don't eat...my stomach will be killing me in the middle of the night....oh Pooh..... I WANT ME BACK.....I want to outrun the kids, put my flower gardens together, scrub my kitchen walls and scour the bathroom till it needs new paint....I want to finish the quilting and take up more college courses...I want to be able to fill out forms without panicking...to file my paperwork without mixing everything up.....whatever happened to pulling up my bootstraps and being able to discipline my to getting it all done...why am I screaming instead of loving, crying instead of singing....I WANT ME BACK....I used ot remember everyone's name, and could tell you who belonged to who...and who wore what clothing size, or their favorite colors...could sew anything to fit anyone...qquilting, cross stitching, everything about which grandkid had what for birthdays - I just want me back....I don't want to have SSD, or food stamps, or pitying eyes/attitudes....it is tooo much somedays...it really is...but then counting blessings comes always to mind...my family, my Cloudies, but most of all am blessed with strennght from Someone much wiser, kinder and loving than anyone ever....it is just somedays, I just want me back.....I really just want me back....no, I am not depressed, nor am I "screaming" for help....I am just expressing my feelings and being so thankful for all the postings on this site that help keep all our hearts comforted....thanks for listening.....gentlehugsabunch...Mar