mystery illness -- and i hate doctors -- psoriac arthritis?

[nashville_brook]

since 2002 i've had chronic pain, arthritic symptoms, discitis and all sorts of bizarre symptoms. whatever it is that is causing the problem prolly caused an infection in my spine that then became associated with blood clots. i've been undiagnosed and misdiagnosed and had horrible reactions to drugs (liver problems).

today i'm so swollen i can barely move. the pain is consciousness altering. and really -- the only emotion i'm feeling is anger at the entire medical establishment. no one treats pain and if you don't treat pain -- how the FUCK can you diagnose anything? i've had ortho docs, rheumetologists, neuro-docs, pain "docs" and GPs all IGNORE everything i've ever told them. they assume you are a drug addict. they want you out of the office as soon as possible. no diagnosis. no medication. no treatment. the pain "docs" were worse than the real docs.

i'm so tired of being looked at like a criminal or hypochondriac everytime the pain and inability to move get to life-altering proportions. my GP even "fired" me because she was so 'sick' of me complaining of pain and sick of telling me over and over that "she doesn't treat pain."

my condition "feels" inflammatory. Lupus runs in the family -- but i don't have all of the indicators. i have the blood factor, though. i also have inflammatory skin symptoms, so i'm wondering about the psoriac arthritis. does anyone here have this? can you tell me about your journey to diagnosis? or, anyone really -- do you care to chime in on the difficulties in getting medical attention?

[mopinko]

1. i can name that tune in 3 notes.

boy, do i hear you. i have been on quite a journey myself. i am much better now, but still trying to figure it out. i am on my 4th rheumie, 2nd primary and i am wondering about the gastro. the primary that i lost was really painful, mixed up with dh's severe sleep deprivation. i had been seeing her for 6 years, and considered here a friend. i had mostly pain and fatigue complaints. she prescribed many pain meds that only made it worse. when i finally figured out that i had fibromyalgia, she said "well, i didn't used to believe in that, but they are treating my uncle for it, and he is doing well." thanks, let me and my family struggle and sink while you decide whether or not you "believe"
but what tore it was that dh was losing it, i tried to get her to help, and when he told her that he was fine and i was crazy, she bought it. cause i had pain, and nothing helped. so i was crazy.
but i have the same kind of deal- rashes and sores, positive ana, elevated crp sometimes. pain and fatigue. like lupus, but not like lupus. i am on prednisone now, and changes in my digestion seem to point to low level ibd. this all started with intestinal trouble, which, after a catscan and a colonoscopy, i was told was diverticulitis, which i do clearly have. but it looks like there might be more to it than that. like the sores on my tongue that i have had for 3 years, but they just keep saying, "no, it's not the lupus sore." avoiding seeds and nuts has kept me out of pain, but i still don't have normal digestion.
really, it is so upsetting that they don't have all the answers, and they seem to need to blame that on you. you remind them. they hate that.
i hear ya, i hear ya.

[I_Make_Mistakes]

2. Check out the Lyme Disease Foundations web site Lyme.org

There are 3 different blood tests, the Lyme Titer, Western Blot and PCR bacteria, you should get them all.

IF you click on disease on the right hand side it will lead to a page with all the tick born disease and there symptoms. Start with Lyme, but there are many similarities in the various disease. I never saw a tick on myself, but I had the bulls-eye rash (indicative of Lyme), but not the most common of rashes associated with Lyme.

I have arthritic Lyme in my left knee. It is so bazaar, it feels like something tears, then my knee swells up, I can barely walk, and it resolves in 3 days. The fluid has been drained and tested and wasn't gout or arthritis by the idiot didn't test if for Lyme.

I had several positive Western Blots though.

[mopinko]

4. did that lyme thing.

and a couple of mri's as well. i was doubly confounding because the pain is not exactly in the joints, although it is close. so, was it "joint pain" i tried to explain, but they didn't get it. actually, i fit the fibro profile to a tee. 18 out of 20 symptoms. so, did the rheumie *who should be the expert here) figure that out? no. but she sure was embarrassed when i told her that's what i thought it was. really, she was a lot more concerned with proving that the fancy rheumie from the big teaching hospital was wrong. that did me so much good.
i could go on for a couple of long posts about my kids, and some of their problems. so long, in fact, that i ended up having a falling out with a long time friend who got the crazy idea that there was nothing wrong with any of us, i just liked getting sympathy from doctors. which might have been true, if i ever had, for a freaking second.
it sucks to be sick.

[nashville_brook]

5. sucks worse to be sick and no one believe you...

grrrr.

feeling a little less swollen today. not as much pain. so, that's good -- but yesterday was hell.

[nashville_brook]

3. wow -- thank you!

i w2as just telling a good friend today -- that if it weren't for a close relative having a "mystery illness" -- that i don't know how i would have made it thru to here!

so much of this mess is psychological. aqnd for the record, i'm going thru a divorce with a husband who just doesn't "get it" either.

but the thing is... we know we are in pain. we KNOW we can't do the things we are accustomed to doing. all of a sudden, there's fatigue and pain -- and it's so very easy for people on the "outside" to dismiss it.

my therapist's wife has fibromyalgia and is completely supportive of the journey we have to take toward diagnosis of our "mystery illness." i swear -- even with this wonderful support system -- there are days that i just can't deal with it. bleh. this morning was one of those days.

i always thought that my "physicians" were there for all my physical health issues -- not so when they can't figure out what is wrong. it makes you feel crazy on top of being in constant pain. arrrrrgggghh!


thank you so much for "hearing" me!

[mopinko]

6. see, you should come to chicago

eom

[nashville_brook]

7. healthcare is a major issue in thinking about a new town!

i need to check in on that thread -- should have bookmarked it.

new mystery symptom --- crazy itching. like my skin has swollen. just took a benedryl... i'll be in sleepy town very soon!

[mopinko]

8. we have the best.

that is one of the things i am grateful for about chicago. just the best. it's great to be able to take a sick kid to one of the best children's hospitals in the country. we go to the northwestern hospital network for most everything else. good docs, good staff, good facilities.

[Duppers]

9. amen to that!

You just described almost every physician I've been to! I hate them. They do have a need to blame the victim.

Btw, I suffer with CFIDS, which was diagnosed at a big university research hospital. Local docs are too busy being 'god' and racking in the dough to bother to read anything. Besides all women are crocks---well some are, but not all of us.

[mopinko]

10. yeah. if you show what i don't know

you must pay.

[siligut]

11. Have you tried probiotics?

Thought now in some circles is that bad microbial growth in the GI tract cause an immune response, that immune response is responsible for all the inflammation, including the joints.

Probiotics crowd out the bad bacteria, populating your gut with positive microbes, some of these good microbes also manufacture vitamins.

[nashville_brook]

12. i have never heard of probiotics,

but am familiar with macrobiotic diets and the idea behind colon cleansing and all that "hippy" healing wisdom. is this like acidophilous? i'll be researching. thanks for the lead!

[siligut]

13. It's along the same idea

Sort of. "Hippie" you ask? I know ranchers who readily give calves probiotics as a way to ward of all sorts of illnesses. Macrobiotics can help maintain a healthy gastrointestinal flora, probiotics are more direct.

'Probiotics were defined by a group of experts convened by the Food and Agriculture Organization of the United Nations as "live microorganisms administered in adequate amounts which confer a beneficial health effect on the host". Most probiotics are bacteria, which are small, single-celled organisms. Bacteria are categorized by scientists with genus, species and strain names. One yeast - Saccharomyces boulardii - also has been evaluated as a probiotic.

Most probiotic products contain bacteria from the genera Lactobacillus or Bifidobacterium, although other genera, including Escherichia, Enterococcus, Bacillus and Saccharomyces (a yeast) have been marketed as probiotics. Some commercial probiotic products which contain Bacillus are incorrectly labeled with a name not recognized by the scientific community, 'Lactobacillus sporogenes'.'

The above taken from Probiotics
Glad you are going to do the research!

I want to add, MDs are bound by the profession to act like all of their peers. Conformity is actually written into the laws that govern malpractice. Basically doing what everyone else does keeps them safe. So it isn't you they have a problem with, it is fear of malpractice and because there is no well defined treatment for some of the inflammatory autoimmune diseases, that is a very real concern.

Of course there are plenty of well defined treatments for all sorts of things that don't do much good, especially those that require pharmaceuticals and expensive tests, but some problems are too rare and complex to be profitable. Pain has always been difficult because some people are after meds to make them feel high and MDs that prescribe too many controlled substances are monitored closely.

[nashville_brook]

14. on docs and the fear of drug seekers.

i had the misfortune of having my first bout with this in Melbourne, Florida. i grew up here (had since moved to TN -- i'm back -- long story) and lived thru the drug paranoia of "authoritay" as a teenager. a kid you think everyone is overreacting -- then you grow up and realize that yes, indeed, there is a long-standing, malignant drug culture here. it's not just happy potheads.

but here's the story...

i was re-habbing the family house after the parents died. i was doing a lot of heavy lifting and crazy man-work. one night i woke up in extreme pain. i've strained my back before, but this was off the scale and different in tone/texture.

went to the ER at first light. they blew me off. i went back hours later as the pain got even worse and i started running a fever. the ER doc on duty this time said the only thing he could do was give me an epidural. i'm like -- whatever it takes and he shows me to the injection chair (like a massage chair where you puit your face in a donut). so, i'm sitting there trying to prepare myself for a procedure that i have heard nothing but scary things about, and he comes around to the front of the chair and says, "are you SUUUUURE you want this? this is a really big needle and it's going to hurt as i push thru... blah blah blah..." and he's WAVING this freaking needle around like a fencing sword. i was beside myself -- in that kinda gutteral voice you get when you can't stop crying, i said, "i don't care if you hobble a foot, i can't take this pain any longer!"

i could just go cry for a few hours remembering this...

so, he finally gives me the shot and finally there's some relief. full relief as a matter of fact and i've never been so aware of feeling "okay" in my life.

here's the deal -- both ER docs made the decision i was a drug seeker based on ??? what? i was 36 at the time. i came in at 6am if not earlier. i look like a housewife. no purple hair. no tattos. no piercings. no concert tshirt. i explained to the best of my ability that i had had back pain before and this was different and that i was terrified. on the stupid fucking pain scale i was 20 on a scale 1 to 10. i was able to give both of them a decent patient history and contacts for docs at home AND STILL THE MOTHERFUCKERS TREATED ME LIKE AN ADDICT.

i think i will go cry about for a while. it just makes me sick remembering.

so, how do you live with this? do you turn your rage to the addicts who have supposed "made" the medical system this way -- or do you put your anger where it belongs -- on those fucking cowardly ER "docs" and their whole ilk.

[ninkasi]

15. Have you checked for RSDS?

Brook, I can only imagine trying to cope with excruciating pain, while having to do so with lack of support. I suffer from RSDS, and can tell you that it's an uphill battle to get a diagnosis, much less treatment. Check out this website

http://www.arthritis.org/conditions/DiseaseCenter/rsds.asp

It gives the symptoms, and has some information you might find helpful. Please don't get me wrong, I have no medical training, and wouldn't attempt to diagnose you or anybody else, but there are some conditions that cause a variety of symptoms, and are hard to treat. I am fortunate enough to have found a decent pain management doctor, but even so, getting pain relief is still difficult.

My heart goes out to you, because when I first came to grips with the fact that I would have to live in chronic pain, it was very difficult to cope with that knowledge. People who have not dealt with chronic pain do not understand what it's like being in varying degrees of pain for day after day, and night after endless night, Strangely, for me the pain became almost like another aspect of myself, like my heart, or soul, or mind. Pain like that becomes part of you, not a temporary thing like being thirsty, say, which you can relieve by drinking water.

You are afraid to make long term plans, because while some days are better than others, if you try to decide whether to say, go to a movie in a few days, you might or might not be able to make it. You sometimes try to hide the pain from family and friends, either because you don't want them to worry, or because they make you feel guilty, as if your pain was nothing but an inconvenience to them.

Your first priority has to be finding a decent doctor. Another thing that those of us who live with chronic pain realize, is that while individual doctors might like to prescribe the appropriate medicines, many are wary of doing so, because the government has a tendency to monitor pain management doctors. The fear of drug addiction seems to remove rational thought, since drugs taken to treat chronic pain don't make the person suffering high, they just make life more bearable.

After reading your posts, though, I am appalled by the lack of love and compassion your family and friends have shown toward you. Going through pain day after day is both physically and emotionally draining. Having understanding and support from those in your life who should be there for you can make all the difference in the world. Just having to deal with the pain itself is bad, but going through it without a good support system can be a disaster.

I pray for you, and that you can find some pain relief, and that if the ones who should comfort you refuse to, that you will be able to meet people who will care, and will try to share the burden with you. I wish I could do more.
:hug: :hug: :hug: As it is, all I can do is send some cyber-hugs and healing thoughts your way.

[nashville_brook]

16. cyberhugs are healing too.

:hug:

the thing about not planning ahead is so incredibly familiar. it never fails that if i commit to something when i'm feeling okay, that i'll get sick by the time i'm supposed to show up for something.

i had a professor in college who was also a friend and collegue. she had an inflammatory illness. never correctly diagnosed. it was so frustrating that i could never plan anything with her, and i really didn't understand it at the time. now i do.


i wish i could come up with an excuse for my friends being unsupportive, but i don't. my intuition is that they just haven't experienced what i deal with and therefore don't believe it. sometimes i felt like this with my professor friend.

i was just kvetching with a *real* friend, here in my new town, about all the symptoms and illnesses i've had since the mid-90s. this has come on slow. crunchy knee joints in 95. kidney pain. pleuritis. rashes. migraines. fevers. fatigue. joint pain. every little "complaint" was treated like a psychosomatic/hysteric/make-believe excuse to... what? miss out on my life? people have treated me like i want to be sick. i've never been a whiner. i've been more involved and more committed than almost anyone i know. sometimes i think it's been a mistake to keep my pains to myself -- like, if all people see is day-to-day grind, when i get sick they have cognitive dissonance.

but, that's blaming myself yet again and i've sworn off that.

i've been okay for a week and now i have fatigue, pain under my ribs (pancreas? spleen?) pain in my chest, back pain and all sorts of other fun/gross symptoms. i know it's catching up to me again. i think it's the sun -- just going outside to walk the dogs and run errands. it sucks.

no doctor here, which could be a good thing. get to start from scratch. i can't say that i have much excitement about it. i'm really sick and tired of being blown off by doctors. i'm sick of being treated like a drug-seeker (and this place is lousy with drug-seekers -- so i'm totally screwed). i don't want to do morphine ever again. steroids help. morphine just dulls everything. it's a blunt object. right now the worst of the pain seems to be systemic (organs), so dulling the pain will just mask what really needs to be addressed.

the plan? i'm looking for an osteopath. haven't tried that yet. it can't be worse than anything else i've been thru and at least it will be new.

aren't i a bundle of joy!

here's a joke to lighten this up... what does a snail say on the back of a turtle?












wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!

[siligut]

17. Denying pain in another is cruel.

The failure to validate pain and suffering has to be about the cruelest of things. Like the neos denying the Holocaust; where I think it is the actual purpose, it is dehumanizing. A DO is a good idea.

Pain under ribs could be anything, even inflamed cartilage. On the right is your liver and gall badder, if liver, you would feel it in your back, at the tip of your scapula first, gall bladder is usually after eating heavy food. Mid abd is pancreas and stomach, left is spleen. Pain can be referred, so where you feel it may not be where it is.

Thanks for the joke, humor really is the best medicine, but it helps not to be in pain, pain is such a mind trip.

[nashville_brook]

18. i'm dylexic too, apparently -- i meant the left side :)

denying pain = dehumanizing... in terms of my doctors i can totally see where this comes into play. they are just specs inside gigantic healthcare machines. i'm one patient of ?? hundreds, maybe.

of the three GPs i've seen since this happened (all internal med) it breaks down like this:

1. doc #1 was my long-time GP. i went to her first with back pain, leg pain, nausea, malaise (which is s a vast understatement) and general sickness. i couldn't walk. or put pressurre on the left leg. i hadn't eaten in days and wasn't hungry, because of the vomiting. i looked yellow, even tho my husband told me i was crazy. i was so sick i had to be wheeled-in in a wheel chair.

she goes thru the basic "whats up" routine. orders some bloodwork, and bascially dismisses me, saying i prolly have a virus and i'll be just fine in no time. get some rest. i'm crying. too sick to argue. my husband is wheeling me out of the office and she runs after us... "WAIT! come back. your LIVER levels are high. lets do some more talking. (i told you i was yellow!).

blah blah blah -- long story short, it took a few more visits, but eventually she found the damn deep vein thromboses in the left leg BUT then put me on warfarin, which totally pissed me off b/c i was in the middle of trying to get pregnant -- something we had been working on, me and my GP and my OB-GYN. so, off to my OB-GYN to talk about what to do about the whole "trying to have a baby" thing. she took me off the warfarin and put me on Lovenox.

this is when i think... maybe my GP is overloaded and that's why she prescribed the nasty warfarin which is way contraindicated in women trying to get pregnant (i was 38 at the time and getting pregnant was a NOW or NEVER thing) maybe it's time to find someone else who might have a lesser caseload... so.... off to a new/different GP for a second opinion.

2. doc #2 was the new doc in a gigantic hospital complex. her little nook seemed like a third world clinic. her assistants never used universal precautions -- hell -- they hardly had basic manners. it was weird. but i stayed with her thru my months in the hospital b/c i didn't have a choice. during my time in the hospital i had a total of 10 or more doctors seeing me over the course of the stay and she never got in anyone's way or bothered to explain to me what was going on or ADVOCATE for me in any way. she was a total fapster.

3. #3 doc -- so when all the hospital stuff is over, i go back to doc number one with tail between legs. she treats me like a jilted lover, but takes me back. then, she quits the practice and her reoplacement... i'll just call her Dr. Pain... is FRESH out of school -- pampered, preppie, full of herself. the first time i see her it's to renew my migraine meds and she (honest to god) treats me like a drug seeker. i can spot this from a mile away, now. as if IMITREX has any value as a recreational drug. she comes in the office -- no file, no notes, arms folded in front of chest -- "I DON'T *DO* PAIN." -- period. she doesn't *do* pain. and if i wanted migraines (or any other painful condition) treated, i would be sent off to specialists. i said fine - so she orders the whole kit and caboodle of migraine imagining tests which i have done so many times it's just sad. but off i go again -- another $2500 later it's the same dx and my husband is hopping mad at the huge medical bill.

long story short, Dr. Pain "fired" me for having too much pain. she told me to come pick up my records that she never wanted to see me in her office again. mind you -- i never ONCE asked for pain meds (i don't consider imitrex a pain med)-- i only went to her when the pain suggested that i might have something going haywire.

to say that i'm gunshy about finding another doc is another vast understatement. i'd rather die slowly and painfully that go thru this shit one more time.

[ChrisCat]

19. I hate them too, but our last one may be on to something.

Or so I hope. I've fought for twenty some years for a correct diagnosis for my children and I. We have unexplained blistery rashes and peeling skin, stomach pain and GI distress, headaches, fatigue, nausea, bone and joint pain and sometimes swollen knuckles. We've been "diagnosed" with IBS, fibromyalgia, "borderline" lupus, failure to thrive syndrome, JRA, panic attacks, depression, ulcers, connective tissue disease, excema, psoriasis, arthritis and polymyalgia. And probably hypochondria. Our last visit to the doctor came about because my six year old has been up crying with his bones hurting 4 or 5 nights a week and I couldn't stand to see him suffer. He also had a peeling rash on his feet and an upset stomach. Our doctor thinks we may have a genetic condition called celiac sprue, but he didn't know enough about it to properly diagnose us, so he's sending us on to a GI specialist. I sincerely hope this is what it is, a condition that can be controlled with diet instead of a chronic auto-immune disorder. I've been online trying to learn all I can and it mimics many auto-immune disorders. I hate to get excited too soon, but I've been gluten free for a week and my rash is clearing up and the painful cracks in the corners of my mouth are GONE. For the first time in years. And my son hasn't been up crying for several nights in a row.

I can totally relate to bad doctors. I've had many usher me out of the office with a prescription for anti-depressants or telling me to take fiber for my stomach problems. Once I drank a beer at a party and three hours later was doubled over in pain. I had to go to the ER and the doctor told me that he didn't want to treat me because I had been drinking and I came in there "to get his ass in a sling". He told me to go home and take some tylenol. Other times I would come in with extreme stomach pain and they would give me something they called a gastric shake and send me on my way. I finally quit going for myself because they treated me like I was crazy, but when my children came along and had the same problems, I took them to doctor after doctor. I'm hoping so much that they've came upon the right diagnosis this time!

I hope you find a good doctor and get a proper diagnosis. I know what it's like.