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Fibromyalja
Question:
Kcat; why do you think some Doctors can be come real a**holes; when you start to know more cutting-edge care for yor condition than they do…I have tried to explain paralles (sp?) of my symptoms to the 11 criteras of Lupus and qualifying with 9….I am on day six of my stop smoking; going cold turkey!! So I am feelng really edgy and depressed; not good. My toe amputatation is coming up this Tuesday the 23rd; unless my Crohns goes off the charts again…I have recently found a lady whom; posts here and on the alt. cd/uc; that said she has; Lupus which caused her Ulcerative Colitis? The other thing that pisses me off is my GI guy whom I really like was in this denial that Remicade had been in connection with a TB death; Yet my Rheumatologist and I talked openly about it . I had a TB test November 99" which was negative. For one year now I’ve been their REMICADE/ METHOTREXATE TEST PILOT… with no affects or symtoms of TB. I WILL BE TRULY BUMMED IF THEY PULL THIS DRUG…It makes alot of my Crohns symptoms go away ; even if it does not last 8-10 weeks…and helps my Atrhritis… Sorry this was supposed to be short….Thanks!! SUSAN p.s. if only I made a "test-pilots" wage… E@YOU!
Response:
Susan, I couldn’t help but reply to your post as I’ve had problems too with ulcerative colitis-due to the lupus and drugs. Could you give me the site for the uc group? I’ve not been diagnosed with Crohns, they believe all my GI problems stem from lupus inflammation in the intestines coupled with all the drugs. I nearly bled to death this November from the small intestines, so now I am on NO treatment-pain control only-"we will keep you comfortable". I’m curious about your Remicade use, as it was brought up today by my rheumy as a possibility in the future. If you don’t mind me prying, I’d appreciate it if you’d let me know all that goes along with Remicade. Thanks in advance, hope things get better for you soon. Cindy
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On Fri, 19 Jan 2001 10:13:30 -0800 (PST), SEATTLESUEat…@webtv.net (SEATTLE SUE ELOFF) wrote:
Kcat; why do you think some Doctors can be come real a**holes; when you start to know more cutting-edge care for yor condition than they do…
I’m no psychologist but my guess is that at least in part – they spent (or Mommy/Daddy did) several years worth of tuition to become god-like while we are just "average people" with average brains and without the benefit of long classes with monotone professors – therefore we are trampling on their egos by understanding things either they *don’t* understand or they do but don’t want to share with us. That’s one theory. 
I also think that with the way the insurance situation is in the US (and possible elsewhere) they have such high patient loads and so little time to keep up with the latest therefore they project their feelings of failure onto us. I also think they are threatened by the amount of *valid* information that is available on the internet. They surely hear a lot of the b.s. that is available too – I know before I ever got online i had biases against the concept – like it was spreading lies and snake oil and so on. And yes, that happens – but it happens without the internet too and in general the ‘net provides not only these wonderful support groups but tons of useful, rational and *correct* information. some of these same docs are part of web pages for their various institutions… so I guess only *their* opinions count. All that said, I have heard of doctors that actually applaud the efforts of groups like ours and the web in general for it’s rapid relay of information. And docs who make use of same.
I have tried to explain paralles (sp?) of my symptoms to the 11 criteras of Lupus and qualifying with 9….I am on day six of my stop smoking; going cold turkey!!
Congratulations! I know it’s rough going (I smoked 10 years – quit when I met my hubby).
So I am feelng really edgy and depressed; not good.
no, that’s the tough part. But you can get past it – keep on keepin on, girl.
My toe amputatation is coming up this Tuesday the 23rd; unless my Crohns goes off the charts again…I have recently found a lady whom; posts here and on the alt. cd/uc; that said she has; Lupus which caused her Ulcerative Colitis?
I think this is possible – but may be more accurately termed vasculitis of the GI tract. Probably one and the same though – lesions on the gut, pain, inflammation, misery.
been their REMICADE/ METHOTREXATE TEST PILOT… with no affects or symtoms of TB. I WILL BE TRULY BUMMED IF THEY PULL THIS DRUG…
I haven’t been following this story as I haven’t taken this med. I hope that since it helps you that you will be able to stay on it.
weeks…and helps my Atrhritis… Sorry this was supposed to be short….
it was (shor that is) – look up any of my posts in the last few months – no one here can ramble as long and unintelligibly as I can!
Thanks!! SUSAN p.s. if only I made a "test-pilots" wage…
amen! *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Hi Bruce, my grandmother had TB when my mother was a child. She and her brother always tested positive but never got it until my mom was 80 years old. She was treated and cured of the TB, but passed away last year at 85. Is this a Michigan thing?
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I think it’s pretty common for people living before 1940 to have been exposed to TB, but not had an active case until their immune system became incapable of maintaining the TB germs inactive. Bruce, Michigan
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I’m not freaking out about it at all, I was just asking why my Dr would order such a test! He ordered it over a week ago and I havent gone because I thought it was kind of ridiculous to be tested for something like that since this time, my lungs feel fine.
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For what it’s worth, I was on prednisone for a year. Tested positive for TB in 1945 (inactive). I was put on isoniazid for six months to combat the TB, prevent it from becoming active. As we age, our immune system is less capable of holding down the TB germs by encapsulating them. I was told my chances of developing active TB due to aging along were about 10%. Whether the isoniazid killed all the encapsulated germs is something I don’t know — Bruce, Michigan "Wishes come true, not free" (Stephen Sondheim)
Response:
<< I was generalizing regarding only those docs who do not give their patients any credit for having brains of their own.
I knew that. I’m so glad though that we’re able to have an open dialogue about this. I actually think you present a very fair, balanced point of view on the subject. Of course, I can’t claim myself to be completely without bias. That’s hard to do when you’re married to a doctor. I have been very involved in the medical world though from both sides of the fence, so I do very much have sympathy with what you were saying. << I have recently seen a post-er on hamline who was told some of the most *wrong* things about lupus I’d ever heard.
I think I read that post as well. I also found it very shocking. Thank goodness there are other sources of information available. It’s a good example though of why you should never simply take your doctor’s word for anything. They may be right most of the time, but being human they’re also bound to make mistakes…one hopes not too many and never serious ones. Still, it’s always safest to ask lots of questions, and be an informed active participant in your own health care. Sandra
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I am replying to a posting from Susan – you mentiomed something about a TB death as a possible result of taking remicade. I have been sooooo sick lately- I have been in/out of the hosital since the week before christmas. during all this , at one point there were hundreds of blood tests ordered and even a TB test. I didnt understand why he ordered it and forgot to ask him why until now when i read your posting. Has a connection been found between some of the arthritis medications and TB? At the risk of sounding like an idiot, what are the symptoms of TB and is there any other significant use of looking at the results of a TB tests other than to dx TB? I havent had the TB test done yet. Thanks Karen
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snip
I have to say that in my experience if
they were caring individuals before medical school, they are generally still as caring after. If they tended to be jerks before medical school, likewise that didn’t change much either. < Sandra, you are right on target. Same thing with with a chronic illness. If one is a jerk (or insert your descriptor) before diagnosis, one can surely continue to be a jerk after diagnosis. Although I have a nursing friend who said she did not have the proper ego to become a doctor! to our health kelly
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SWISS MISS / aka: Karen, not trying to freak you out… but yes there has been one reported death in London you can see a feed thru REUTER’S NEWS( Jan 8th 2001 or go to alt.support Crohns-Colitis there you will see Remicade linked to TB… Karen you are truly freaking out for nothing… If YOU had TB which I truly; doubt you would already be dead. It is a very severe bronchial disease; in which your lung tissue gets scarred and between that pnuemonia, fluids fillng up in the lungs , high;high fevers/sweat and then you die… in part why it spread so bad in Europe is there saniitation system ; even though it is 2001 …these folks are stilli quite a bit behind the times… WE CAN AVOID THINGS WHICH WE KNOW ARE TRULY BAD FOR US; BUT WHAT ARE YOU GOING TO START TO DO LIVE IN A PLASTIC BUBBLE… THE PLASTIC BUBBLE WOULD BE HARMFUL TO US…In YES! the "plastic would be harmful; because both vinyl and plastic creates an "offing-gas" which creates carciogens from what is know as thallows… That which is formed from vinyl and plastic when sunlight heats it… Don’t sweat te small stuff; "live life"… Take Care! Susan E@YOU! P.S. I might also add that most of those with TB HAD IT WITHIN THERE 1ST OR 2ND DOSING
Response:
<<my guess is that at least in part – they spent (or Mommy/Daddy did) several years worth of tuition to become god-like while we are just "average people" with average brains and without the benefit of long classes with monotone professors – therefore we are trampling on their egos by understanding things either they *don’t* understand or they do but don’t want to share with us.
I can’t speak for everyone, but most physicians I know, including my husband, put themselves through college and medical school. Granted some do have big egos. There are also those who don’t spend enough time listening to their patients. I’ve certainly met a few like this. I’ve also met a lot of very caring physicians who took what I had to say very seriously. Knowing many physicans from before they entered medical school till now with more than 10 years in private practice, I have to say that in my experience if they were caring individuals before medical school, they are generally still as caring after. If they tended to be jerks before medical school, likewise that didn’t change much either. I think physicians are people like anyone else, and their personalities as varied as those in any other profession. There are few professions though from whom so much is expected and where a single mistake can lead to total bankruptcy, humiliation and a million other problems. I’m not trying to excuse rude or unprofessional behavior, of course. Just injecting another viewpoint. Sandra
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On 20 Jan 2001 05:22:21 GMT, scroyle…@aol.com (SCroyle909) wrote:
I can’t speak for everyone, but most physicians I know, including my husband, put themselves through college and medical school.
Both of my former bosses came from very well-to-do families who supplied their funding. However, they were very caring doctors. One gave up her practice for research because of the horrible cost of malpractice insurance – leaving her husband to practice and do research. I was generalizing regarding only those docs who do not give their patients any credit for having brains of their own. and I’m sure part of the defensiveness those same docs have could also extend from having put themselves through all those years of training and feeling like "we" (the ignorant patient) are stepping on their educated toes. I have been fortunate in that I’ve found very good docs who *will* spend much time with their patients (of course, this makes waiting rooms crowded and grumpy but for the calibre of doctor one gets out of the wait – it is usually well worth it.).
Knowing many physicans from before they entered medical school till now with more than 10 years in private practice, I have to say that in my experience if they were caring individuals before medical school, they are generally still as caring after. If they tended to be jerks before medical school, likewise that didn’t change much either.
<nodding
I’ve watched that process myself – though I was surprised by
a former coworker who really was a jerk outwardly – constantly interrupting conversations with my boss as if he were more important because he was a "medical student", etc. But when he started residency his entire tone had changed. He was the one that encouraged me to continue fighting for proper rheumatological care.. young and idealistic? I don’t think so. I think his new marriage, the work with patients and realizing how much better a doctor he could be by caring just clicked into gear for him. But he’s probably the exception that proves the rule. My former boss treated little ones – and though she wasn’t so great with adults – she could charm little kids into relaxing examinations.
I think physicians are people like anyone else, and their personalities as varied as those in any other profession. There are few professions though from whom so much is expected and where a single mistake can lead to total bankruptcy, humiliation and a million other problems.
Absolutely. I have often thought I would love to be a doctor, I basically like people and medicine is fascinating to me. The major thing that holds me back is that I know I could make an error in diagnosis, treatment, etc. and at the least make someone’s life difficult. I couldn’t hold myself to that standard without losing my mind to be honest.
I’m not trying to excuse rude or unprofessional behavior, of course. Just injecting another viewpoint.
And I think it’s important that we do so. We get so frustrated with the doctors that *don’t* care or that are too busy to keep up with the latest data or are sick of fighting HMOs etc. that we forget about the really good docs out there that have tried to help us. I know I do. I’m reminded of them when my daugther sees her GP – he’s wonderful. And my new urologist (or at least her nurse practitioner) is very patient and caring. When I sat blubbering in the exam room on Tuesday she just said "that’s okay – this is your time…" and let me get myself under control. I could never have done that with the male uro. I was seeing – he is an excellent doctor but distant and abrupt – leading me to clam up instead of voicing just how miserable I am. okay – enough rambling. I hope everyone reads your input on this Sandra because we do need to be reminded that these folks are not gods – some may think they are, and some of us may resent them as thinking they are. I have recently seen a post-er on hamline who was told some of the most *wrong* things about lupus I’d ever heard. This is a rheumy so all I can figure is that he is not keeping up with the times. I guess when I wrote the above post I was still seething over that. Told her that without skin involvement she couldn’t possibly have lupus. Told her that she didn’t need eye checkups while on plaquenil and that this was just the opthalmologists way of making money off of her. When she asked if a new med would have side effects he told her he wouldn’t give her a medication if it had side effects! So that had me set on edge already and prepared to pounce. :) thank you for a more evenhanded opinion. take care, *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
I found *solid* sleep invaluable to coping with FM pain as well as the fatigue of lupus and FMS. I was on trazadone for a year or so but it made my b.p. so low that I began having multiple fainting spells per day. Now I just have them now and then and take Ambien for sleep. most docs say "that is for short term use only" but I’ve been on ambien for 3 years with no ill effects and continued success. I am *dependent* on it – without it I do not sleep. But I rarely need to nap anymore and for a couple of years I had to have at least a 2hr nap per day even with normal sleep patterns (and while on Trazadone). there are several ways both natural and medical to help you get sufficient sleep and I do think it is very important in combating this problem. On Wed, 10 Jan 2001 11:37:25 -0500 (EST), Janes…@webtv.net (Jane Daily) wrote:
I have had lupus now for about ten years, but in the last year I have been dealing with *Fibromyalja* this puppy is not fun, I hurt all other especially my hands and back and hips !I want to get better,,,,,,,,,can someone help me? My Doctor has put me on *paxil* 20 mg. a day ,to help with the stress in my llfe. I just started that today. I was talking 30 mg this summer. I just stop taking it the last of December. I got alot more pain after I went off it………..I thought it was my mattress that was giving me back pain…….lol I want to feel better ……..can anyone out there give me some ideas???? If I take something to help me sleep good, will that help alittle ? The dr, said I’m sleeping *but* not a good sleep……….ok The Janester
*********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
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hi! Are you taking vioxx or celebrex? Those are 2 meds that are prescribed for the joint pain associated with FMS, SLE, RA, etc. I take vioxx -when I am not in such a horrible flare from the SLE and RSD as i have been, it does seem to help. Are you taking any kind of muscle relaxer? I think everyone on here takes something different- I have tried flexeril, baclofen and zanaflex-I am taking zanaflex now and it does help to take the edge off.. Are you taking anything to help you sleep? The firt thing I try is benadryl, if that doesnt seem to be doing the job, I take Ambien. I have been taking Ambien for almost a year now and it seems to be losing its effectiveness fr me- but of course everyone is different. There are a lot of sleep aids out there. Another bit of advice- try to stay warm- this time of the year is the worst! Take a hot bath before you go to bed- relax!!!!! ( I am not an expert n relaxation though-i have 3 kids,-2 of which are unruly adolescents, 2 naughty dogs, and have 65 men working for me-so needess to say, I dont do much relaxing!) I hope you find something that works for you! Karen
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If I take something to help me sleep good, will that help alittle ?
I have found that sleeping well has the biggest impact in decreasing the fibrommlgia part of my pain. I have tried a variety of things, some that worked better than others. Soma worked well for awhile but slowly becme less effective. Currently I am using klonopin. I sleep great but since it is so long acting, I have to be sure to take it at least 8-9 hourse before I need to get up or I am too groggy the next morning. It may take trying several things to see what works best for you.
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I have had lupus now for about ten years, but in the last year I have been dealing with *Fibromyalja* this puppy is not fun, I hurt all other especially my hands and back and hips !I want to get better,,,,,,,,,can someone help me? My Doctor has put me on *paxil* 20 mg. a day ,to help with the stress in my llfe. I just started that today. I was talking 30 mg this summer. I just stop taking it the last of December. I got alot more pain after I went off it………..I thought it was my mattress that was giving me back pain…….lol I want to feel better ……..can anyone out there give me some ideas???? If I take something to help me sleep good, will that help alittle ? The dr, said I’m sleeping *but* not a good sleep……….ok The Janester
Response:
Hi Jane, Yes, have your doctor prescribe something to help you get into REM sleep. The lack of good, sound sleep for at least 6 hours a night contributes greatly to your pain. I’m on 50 mg. Elavil and 150 mg Trazodone at night. I sleep like a rock! As far as the Fibro pain, I’m not on any pain meds right now. For my back and hip pains I use Soma (muscle relaxant) and Extra Strength Tylenol and I am very fortunate to have a hot tub where I can soak the aches away when needed. I am on Daypro (anti-inflammatory) for my hands and other joints. You might also see if your doctor will send you to a physical therapist for heat massage therapy. It’s done wonders for me…. — Fran <__~ / Handmaiden to HRH Lemonade Grandmother to Ducky, Future Horsewoman Extraordinaire "Jane Daily" <Janes…@webtv.net
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I have had lupus now for about ten years, but in the last year I have been dealing with *Fibromyalja* this puppy is not fun, I hurt all other especially my hands and back and hips !I want to get better,,,,,,,,,can someone help me? My Doctor has put me on *paxil* 20 mg. a day ,to help with the stress in my llfe. I just started that today. I was talking 30 mg this summer. I just stop taking it the last of December. I got alot more pain after I went off it………..I thought it was my mattress that was giving me back pain…….lol I want to feel better ……..can anyone out there give me some ideas???? If I take something to help me sleep good, will that help alittle ? The dr, said I’m sleeping *but* not a good sleep……….ok The Janester
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