who here is looking for something "mysterious and complicated" to be wrong with them?

[nashville_brook]

i had a bout of vertebral osteo-mylietis (an infection in my spine) in 2002 which was immediately associated with blood clots, toxic hepetitis, pancreatitis. i recovered from that and was left with chronic pain, chronic debilitating fatigue and problems with mobility.

other than that, i'm just fine (that's a laugh line for all you chronics, and will likely cruise over the head of anyone not suffering from long term pain or disability).

after working under the hypothesis that my symptoms pointed to ludus (i had previously tested positive for the blood factor), my doctor finally came to the conclusion that my syptoms pointed to Fibro.

i've been working on an essay that i hope to be able to use with my friends and family who have trouble understanding my situation, when ironically, i got this message from my boyfriend today:

Lupus to Fibro to ? over a couple of months makes me wonder if you're *looking* for something very mysterious and complicated to be wrong.

yep -- i'm LOOKING for something MYSTERIOUS and COMPLICATED to be wrong with me. i must have an unspoken need to feel "special," doncha think. poor me -- must be the only way i can distinguish myself.

anyone else ever experience this?

[siligut]

1. He can't get it.

It’s like the guys who have been in combat know that, even people who want to understand, can’t. The experience of chronic pain/disability, especially without a diagnosis that might offer a clear hope of proper effective treatment, can be a dark tunnel with no visible light in sight. < That sounds so negative, so I will add don’t give up hope, ever, continue on the path to learn and heal and find the assistance you need to do so.

There is an article on fibro, it is titled: Looking Good and Feeling Awful, I would link it but it has a $10 course fee. If you were covered in red bumps most people would ask if they could get you some milk and cookies, offer you their chair and smooth back your hair, but fibro and these other syndromes with no clear diagnosis don’t show and that is the crux. Getting docs to take fibro seriously, just ten years ago, was a challenge.

About your boyfriend, he sounds a bit utilitarian, but again, he can’t understand. If he had stomach trouble he would complain until you convinced him to see a doc, where he would get a med and feel fine, a done deal. You can’t do that; it sucks that you can’t, because everyone on this board knows you would in a heartbeat if you could.

I don’t know where you live or what you have tried, but a Naturopath might help, they work to remove or add whatever it is that is keeping your body from healing itself, it can be intuitive. Also acupuncture, again, it helps get the energy to flow to where it is needed. Have you tried eliminating gluten from your diet? I have seen a myriad of autoimmune s/s caused by celiac disease. Also gut problems benefit from probiotics. Please don’t be upset if you have tried everything and you feel I am simplifying, I don’t know you at all, I am writing this because of the people I know who have Lupus/fibro-like s/s.

[nashville_brook]

3. things that work -- low carb, low stress, quality sleep

i've done the "elimination" diets and found that carbs and sugar are a major contributor. i LOVE my new GP, but wouldn't mind adding a Naturopath to my team.

on another note -- very weird -- i seem to have trouble with electricity. i use a "titanium" mac powerbook, and i appear to be transmitting an electrical current thru my body that is so noticeable that someone can touch my ear and i hear a vibration -- like a bee. you can feel it on my arms and cheeks. it only happens when the computer is plugged-in. we've done a dozen "controlled" experiments where i see if someone can tell the difference when i'm touching and not touching the laptop body. also, it does't work with anyone else -- in other words, i don't feel it on them. on the same note, i can't wear watches -- they stop in a couple of weeks. all that to say, i wonder, since acupuncture works with "energy flow" if i might not be a good candidate. it's something i can't afford right now, but once i find a job, i'm going to give it a shot.

since i wrote this, the b/f and i have come to more of an understanding. it's just so disheartening to wake up everyday with the pain, stiffness and fatigue, and still not get any understanding. it's an uphill battle that i'm willing to take. hopefully we're getting closer.

[Warpy]

2. I went through 13 years thinking everybody else felt

as lousy as I did. Never mind their joints didn't turn red and swell up, that they didn't get hospitalized for kidney failure and a series of weird infections and that their cheeks weren't bright red all the time, I was NORMAL, dammit, and that was that. I was just lazy, a hypochondriac, blah blah blah.

A teaching hospital thought I was interesting and I finally got diagnosed. It was a kind of vindication, but since there was no cure it was also depressing as hell.

I wouldn't wish it on anybody, not even the present maladministration.

I don't know who writes stuff like "looking for a complicated diagnosis," and I certainly wouldn't want to meet him.

Kick him to the curb, honey. Dump that chump, drop that drip, shed that schmuck. It's bad enough to be sick without having some fool beat you up over it.

[nashville_brook]

4. on assuming we are normal -- ain't that the truth!

i'm NOT a complainer. quite the opposite. i'm much more likely to let something get bad to the point of needing to go to the hospital before i do anything about it. i don't sit around in hypochrondriac mode, deconstructing EVERY little pain. rather, i wait until it's scaring the shit out me and then try to suss it out. so, what people SEE is what they call "hypochondriac" mode.

i got this constantly from the ex-husband. my dad was a pharmacist and i did the whole rigorous physiology and latin education in preparation to become a doctor if i so wanted. i didn't. but i can talk the talk because it's a part of my family culture and my education. i also have a collection of medical dictionaries and encyclopedias that were gifts from family members in remembrance of the deceased father and given in the hope that my years without health insurance were spent as safely as possible. i had to SNEAK into the library to read these when i was worried about a new symptom becasue the ex would GO OFF on me about "inviting" illness and being a hypochondriac. this, even after months spent in the hosptial with a mysteriously contracted infection in my spine. healthy young women don't just get vertebral osteomylietis. all the literature points to scary comorbid conditions like cancer.

it took me years to realize that not everyone has screaming pain in their joints or constant muscle spasms/pain in their back. i beat myself up constantly for "doing something bad" to my back/knees/hands/wrists/shoulders/neck/digestive system/nerves. "oh, if i'd just 'take it easy.'" yeah right -- "take it easy," as in not participate in the family -- as if THAT wouldn't bring the wrath of the ex-husband! just bringing groceries from the car into the house was enough to put me down for the night. add to that, the constant pressure to become fully-employed again, when i KNEW i couldn't handle it. sheesh. i'm so fucking sick of this shit.

yes hell, i'm trying to find out what is wrong with me because it AIN'T RIGHT. it's terrifying. i've gone 20 years pretending this is normal and i'm to the end of my rope.

[Lurking Dem]

5. I'm the same way.

My docs and I now describe it as, "I'm okay!" "I'm okay!" "I'm okay." *SPLAT!*

They were amazed when they started getting all these test results that I wasn't completely bed ridden.

[siligut]

6. Something Eleanore Roosevelt said. . .

"When you get to the end of your rope, tie a knot and hang on". Totally creepy about how you have been treated, it is truly cruel to deny someones suffering, let alone treat them as if they are making it up. In all my years in the medical field I have met only one person who might have been faking it. People just don't fake it, people want to be healthy and productive.

Do streetlights go out when you walk by? Sounds like your electromagnetic field is strong. Makes me wonder if you might try an alkalizing drink. Mix 4oz club soda, 1 Tbs lemon juice and ½ tsp baking soda in a large glass and drink it, do this twice a day for a few days and see if you get some relief. This working off the idea that lactic acid may play a role in your pain. Of course, elevated BP or renal disease would deserve some attention as the baking soda has, well you know, sodium.

This is good, when I first read your recent note, I thought about the baking and soda lemon juice. I don’t have any carbonated water on hand, so I just mixed them in water about thirty minutes ago because I was having muscle pain in my neck and shoulders, well, it is gone now. Funny, I hadn’t thought about it for months, thanks for jogging my memory.

Thinking more about the infection you had and the antibiotics you probably took, you might benefit from probiotics, you can get them in active culture yogurt or pill/capsule form. Everything from ulcerative colitis to rheumatoid arthritis have been shown to benefit from adequate healthy intestinal flora.

Glad your guy is coming around.

[nashville_brook]

7. wow -- so there really is something to the electromagnetic stuff??!!

i will totally try that. i might have mentioned that i can't wear watches (my mother had the same problem) and i have noticed street lights going out around me -- rare, and chalked up to random coincidence. it's not like every light goes out as i walk down the street -- thank god! i have enough to deal with without thinking i'm stressing the electrical grid! :evilgrin:

in the last couple of months i've "killed" a handful of electronic devices. the motherboard on my computer had to be replaced. then the b/f's m-board fried. then the phone system. then the radio-controlled garage door openers. i've resolved not to touch the TV.

i've been treated the worst by doctors. generally, nurses "get it." while it's not the most egregious transgression, my last GP (internal med) in nashville provided me with the most heartbreaking experience -- she was taking over for my old GP (who moved on) and on my first visit to her she told me outright the "she doesn't 'do' pain." at the time i was seeing a pain specialist, so i said that i had that part of the equation under control and went over my list of symptoms that needed to be addressed from an "organic" standpoint (i.e. i'm not asking for paid meds, but can we try and get a diagnosis, please?). the list was enormous from leg pain (had a DVT with the infection) to rashes to migraines. specifically i needed her to refill my Imitrex script, which she refused to do until i got ANOTHER imaging study (2500 out of pocket). it was my umpteenth imaging study for migraine. i'm 40, and have been a confirmed migraineur since i was 17 -- with all the imagining, eeg's, nasal xrays and doctor consults you can shake a stick at. i obliged and weeks later she finally gave me the script. for IMITREX! it's not like i was asking for Demerol. weeks later i decided to stop with the pain docs because i was tired of all the morphine and called her for an appointment and to update her on my situation. i also wanted to get a liver panel as i was having those familiar symptoms. guess what. she told me that i "could pick up my records at the front desk." that she had already "put me on notice" that she doesn't "do pain" and this was the "last straw."

other than a vestigial beach accent, i appear to be as far from a drug-seeker as can be. i dress like a boring housewife, have boring hair and do nothing to indicate my political leanings or personal life. i'm just a 40-year old woman. i can't, for the LIFE OF ME, figure out what sticks in my doctors' craw so f'n bad. i have never, ever, come right out and asked for pain medication. my approach is, "please help me figure out what is wrong and advise me on what to do." this episode made me feel like a criminal.

okay -- enough of that! i'm off to the store for club soda!

thankyou! :hug:


'

[Lurking Dem]

8. I don't know if there is anything to this at all.

It may be totally crackpot but......

http://www.timesonline.co.uk/article/0,,2087-1774586,00.html

[nashville_brook]

9. holy crap -- this gives me some new search terms! thank you!

[Lurking Dem]

10. >hugs

[neweurope]

11. I certainly have experienced this...

after I had been very, very sick already for almost 10 years - getting continuously weaker, loosing musculature, being exhausted all the time and constantly in pain - a doctor asked me: "Do you WANT to be sick?" No, asshole, I don't want to be sick. But I AM sick and I finally want to know the name of the sickness that plagues me. That's important for my pension, and, yes, it's also important in relation to family and friends. As long as I just SAY I'm sick nobody quite believes me, even though I have been retired for 6 years (I'm only 52). It's driving me crazy.
Thank God I have a very good doctor (General practitioner i think you call it) who doesn't give up on me. I want to test for Dystrophy Myotonia next. The problem here is that meanwhile I'm so totally exhausted that I hardly have energy left to see yet another doctor and make yet another test.

------------------------

Remember Fallujah

Bush to The Hague!

[ProfessorGAC]

12. I Think You Need To Wake Him Up

He either has to make the effort, NOW, to understand the effects of pain and partial disability, or he needs to be launched.

Sorry to be so binary. But, nobody gets it unless they make the effort to get, and you need to lay down the law.
GAC