Re: An idea
#282993 - 09/19/06 07:16 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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My original rheumy dx the fibro and gave me muscle relaxers, zanaflex. The new rheumy claims its secondary fibro meaning that when whatever IT is that I have is "fixed" the fibro will go away!
I thought fibro does NOT cause swelling, am I wrong? My moms is convinced I have Lyme disease as she has it. I have had the testing and know its not 100% accurate but I live in the city, didn't I read that you had lyme?
Gotta run for now, gotta take Oliver for his last puppy shots. Will be back on line in the morning!
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Taking it one day at a time.....
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Thanks!! I agree some docs are idiots but I'm struggling with the fact that I've had to have seen over 10 different docs in the last year or so and they keep shuffling me back and forth and no one is giving me anything tangible!  Are they ALL idiots??? 
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Thanks Susie, you post made me giggle. I'm sorry about all your medical issues but boy can I relate!! I've done many different AD's as well. Prozac made me a zombie and so anxious, I was driving to work one day and actually forgot where I worked!  WEllbutrin was good for a while but it killed my sex drive. Lexapro was really great but the starting and stopping was very traumatic. Zoloft is just ok. I switched to it when I was trying to get pregnant as its supposedly one of the more "safe" ones for pregnancy.
Since it doesn't look like we will be trying to get pregnant anytime soon, if ever as they say my changes of carrying are slim to none-already had 5 miscarriages-yet nothing is wrong there either!   I think I'd rather try another anti-depressant. I felt best on the lexapro but boy it took WEEKS to get stable and it was really hard trying to stop it. I've been seeing the Cymbalta ads on tv lately and considering trying that one.
My ibs or whatever is wrong with me has switched from C to awful D and one of the side effects says C so maybe it will help me with my D? Than again, I'm afraid to make too many changes at once and not know whats causing what. I'm in my 5th week of weekly humira shots and I'm trying to decrease my steroids as well. I asked my internist two weeks ago about switching AD's, I didn't ask about the Cymbalta at that time, and she suggested we wait a bit and I think this is her reason why. Its just all so darn frustarting and confusing.
Maybe I'll just leave well enough alone for the moment. The crohns guy that I see October 5th is technically a surgeon but he specializes in crohns. He is a friend of my boss and is supposed to be the best crohns guy around. I can't say I've been overly impressed with him. I'm still waiting on my IBD generation two promethius blood test which is about 60% accurate in diagnosing crohns. I do not have any mouth sores or fistulas and when they ran blood work, the amount of vitamins I'm absorbing came back ok so he is leaning towards saying I don't have crohns.
The rheumy is thinking more crohns because of the change in my bowel function and the fact that my RA antibody test and ana tests are negative. However, my x-rays do show bone erosion's and if your arthritis swelling is caused from crohns, they typically don't see erosion's. Hmmmm?!
Right now my symptoms, in no particular order are
-D, sometimes up to 20 times a day (used to be C to the point of taking miralax daily for years!)
-abdominal pain and bloating-not necessarily any worse than when I've had IBS flare ups in the past though
-joint pain and swelling, most of the visible swelling is in my hands, wrists, feet and ankles but my knees and hips also hurt a lot. To the point of needing help to get up some days. Joints are not red but sometimes hot to touch
here's my hands anad feet
-brain fog, lack of ability to concentrate and remember
-nausea, to the point of vomiting some days
-muscle weakness and soreness
-bruise easily
-loss of appetite and weight loss, 25 pounds in a few months
-costochondritis, an inflammation in my chest and ribs
-Uvietis, an inflammation in my eyes
-shortness of breath and racing heart, EKGs are normal
-about a month ago, started having this "newer' pain in my chest, different than costo. Its why they did the endoscope but that showed nothing. Its a sharp pain, always there, worse with eating. Its just to the right and under my sternum, its a very isolated spot and does not radiate or move. When I eat, it feels like I'm swallowing glass.
_insomnia, not necessarily new, have had troubles for a few years but always tired, even after waking up
-shaky, my hands are constantly shaking and my body twitching a lot, usually when I try to relax
-generally feel sick, like I'm coming down with the flu
Thats what I can remember at the moment.
Here are the drugs I'm currently taking
-Zoloft 100mg
-aciphex, also have rx strength zantac
-pre natal vitamins
-birth control pills
-prednisone just reduced to 5mg
-placquenil 200mg twice a day
-humira injections once a week
-xanax 5mg at bedtime, once in a while during the day for anxiety
-zanaflex 6mg, muscle relaxer for fibro
-restoril at night
-ambien cr at night
-probiotics
-nutritional supplement called ambrotose
-vicodin or percocet for pain
I'm open for suggestions!! The docs seem to be clueless! I,ve been through teh gamet of fertility tests, 5 unexplained miscarriages of chromosomally healthy babies. Infectious disease testing-one side note, my body did kill the hep C virus which is somewhat rare and it was after that that all the problems started. Thyroid is ok but my parathyroid is lightly elavated but they are not concerned at the moment. My chloesterol is high, something like 237 but they aren't dealing with that either right now. Upper endoscopy, bdominal cat scan, barium swallow with samll bowel follow through all ok. Stool sample was negative for bugs but positive for lots of yeast. A zillion blood tests and most everything is normal and the stuff thats slightly off they say isn't causing any problems. All I do is go to work and go home and collaspe on the couch. We don't even go out to dinner anymore. I'm 36 not 90!
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Thanks Jen, some really good advice there! The gi guy and I did talk about the gallbladder and the D. He said people who usually have D because of there lack of gallbladder tend to have gassy D, meaning its very airy D and tends to be fatty and float. Mine is watery, high velocity and sinks! After doing that for a bit, than it switches to bright neon yellow bile, stomach acid that burns like the devil on the way out of an already sore bottom!
I understand the feeling that your body is falling apart. Its like everyday I wake up and do an inventory of the pain and see if there is anything new hurting!  Is it going to take me 5 minutes to haul myself up or am I going to need a push off the bed from hubby because my body won't cooperate?!
I'm not exactly sure why the rheumy switched. It was after my second appt with her. She said that most serum negative ra people will have slightly elevated ana and my ana is negative. She also said that ra typically doesn't involve the bowels and with the changes I've had she thought more than likely crohns. The internist keeps going back and forth, first she thought crohns was likely than after my stool sample which showed no white blood cells in it, she said it would be less likely to have crohns. The crohns guy says its unlikely that I have crohns but can't be for sure. I feel like I'm getting the run around! The only positive thing is that the treatment for crohns and ra is pretty much the same and they did start me on the appropriate medications. See my above post, I list all my symptoms and meds, that I can remember!
I'm still torn about the mayo clinic. I've heard both good and bad. I don't even know what department I'd go see?! I want to figure out and fix what ever is wrong but if all the doctors here are clueless and everything looks normal, why should I think they will find anything. It would mean time off work for both hubby and I and traveling expanses, blah, blah, blah and what if they don't find anything.
I haven't considered the laparoscope since the fertility stuff. I guess it would show bowel issues but do you know if it could decidedly rule out crohns?
I haven't tried any rx meds for the d yet. No one has suggested anything, I do have Imodium I take when it gets bad or if I have to go somewhere, like the grocery store. But it seems to almost make it worse after it wears off so I try to stay away from it as much as possible.
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As far as the gallbladder goes -- there's a certain type of medication (I can't remember the type other than that Questran is one brand) that works specifically on gallbladder diarrhea, so I'd say at least ask for a sample of it and give it a try. If it doesn't help, then you can rule one thing out. (I know what you mean about Imodium! It used to be my lifesaver but I've been having D problems again over the last month and it doesn't help at all. It'll stop me up, but it's just a temporary abatement and when I do start to have D again I cramp twice as hard.) I've also heard that some people can continue to get gallstones even after gallbladder removal, but that they end up forming in their own little pouch?? I don't remember much, just something I saw in my reading, and I don't know what the symptoms are.
I guess if the treatments are the same then it doesn't really matter if it's Crohn's or RA -- but maybe you should ask the GI or Crohn's guy, "OK, if I really do have Crohn's, what about my treatment would be different?" I know Humira is a Crohn's drug too but what about the other Crohn's drugs out there that aren't used for RA? I can't remember names off the top of my head except Asacol (sp?). Can you link the switch to D to starting any particular medication, like maybe starting the steroids full-time? Steroids is a Crohn's treatment as well so you'd think that the longer you were on them the better you'd feel if you did have Crohn's, right?
A laparoscopy wouldn't rule out Crohn's, but they can get a good look at the outside of your bowels to see if there's anything there that could be causing bowel problems. They can also check out your organs for anything abnormal and biopsy everything to make sure it's healthy. I had really really really awful D from endometriosis -- it was mainly because my appendix was covered in it (which would've ruptured sooner than later if I hadn't had the surgery). I took tons of Levsin and Imodium every day to try and stay stopped up but I still had BMs every day and I usually had at least a couple really nasty D attack every week. I kept trying to go off the meds but every time I did within a day or two I started having horrible D -- where after awhile there's NOTHING in your system so the stuff that comes out is whatever fluid your system can scrounge up in order to expel!! It was so awful, but no one would help me because they kept saying I just had IBS. Arrghh.
Although going to Mayo was ultimately a bust, I do think part of it was the way I handled it. And I don't know if it's even possible, but I'd try to avoid actually going to a department -- I'd call them and see if I could just have a basic initial workup, where you get a complete physical and tell someone nice and sympathetic your history and get bloodwork and urine/stool samples and basically get tested for everything known to man and *then* have them send you to a department. Because the thinking of what department you end up in is going to influence your diagnosis. If you go to gastroenterology, they're going to try and diagnose you with Crohn's or UC or whatever, and if you really have an autoimmune disease or something else, they're probably going to miss it.
Yes, it'd be expensive to go -- but if you're not getting anywhere local, it might be worth a shot. I didn't get much out of it, but at the same time, I don't regret going because I think it was something I had to do. It made me realize I had to get more aggressive for myself if I was going to get anywhere.
We've spent enough on medical care this year that we'll be able to deduct it from our taxes. The IRS's rules include being able to deduct for lodgings and transportation costs, but I'm not sure how stringent the rules are (i.e. I didn't HAVE to go to Mayo). If you do think of making a trip there then maybe you'd be able to deduct at least part of the costs.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Yeah, I heard about making stones even after your gallbladder is out. I THOUGHT the upper endoscopy would show that but you are right, its in its own little sac and needs a SPECIAL endoscopy to test for that! I have had chest x-rays and cat scan and nothing showed up but not sure if it would show stones or not?
Thats what I mean with the Imodium. Is after it wears off, the cramping and Dis twice as bad as it was before! Steroids should improve crohns. However, apparently the 7.5mg dose I have been on is still considered a low dose and might be be enough but I don't want to take more without knowing for sure. Also my c reactive protein test, which is supposed to be a sensitive test to show the amount of inflammation in your body is normal. If I had crohns or ra, it should be high. But, than whats causing all the soft tissue swelling??
I do plan on grilling the crohns and ra doc when I see them next month. I think I will probably wait until after the first of the new to decide about mayo. I'm just to worn out right now to deal with that kind of decision and trip.
Ok, my hands are REALLY hurting, been typing a lot and with the decrease in steroids, my fingers look like sausages and my wrists are screaming.
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Michele
#283034 - 09/19/06 10:20 AM
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Sorry to hear about how bad things are going - I've been keeping up with your posts but I finally wanted to make sure I responded to you. It's the worst thing to be sick and no one can figure out what the problem is.
You seem amazingly positive though! I don't know how you do it.
While I was reading this post though I had some thoughts, though maybe it has nothing to do with anything...but my friend who has been on steroids (she had leukemia and is now in remission) has been being brought off of them for some time now after being on like 30mg. And I know that every time she was lowered on the dosage it made her really sick (throwing up, everything). Could that maybe be part of why you aren't feeling good? I really have no idea, but when you mentioned steroids I just remember what an awful time she had and still is having with them. And she's also discovering all these other aches and pains and rashes and things that apparently the steroids mask and now that she's coming off them, all these problems start popping out. Again, this could have no relevance to you, but it just made me think.
Well I really hope that things start looking up for you soon. What a way to lose weight!  And sorry to hear about your kitty too...how are the dogs doing though?
Gosh I feel so out of the loop around here lately! Take care and keep us posted - you're in my thoughts!!
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Re: Michele
#283037 - 09/19/06 10:35 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks sweetie. The decrease is steroids is definitely making my hands swell and my aches and pains worse. I had refused to take them for so long, I didn't actually start taking them daily until the end of April or May.
I just talked to my girlfriend who is a doctor, general practice and she said I may be decreasing too much at a time and called in some 2 mg pills so I can go to 7mg (adding one 2mg to my 5mg) for a few days, than down to 6 and so on.
I just have to think that this proves its not ALL in my head. My hands look terrible, and if it was just a mental thing, why would they be swelling so just from a decrease in steroids?? Its REALLY hard to type right now....
The dogs are good but big boy kitty is really missing sissy. He has been wondering around meowing, calling to her. 
I definitely needed to lose weight but this isn't what I had in mind!! AW well, I feel like crude but hey at least I have a nice butt!  Got to find the humor or I'll go crazy!!
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Re: An idea
#283056 - 09/19/06 01:43 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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People who have fibro can have swelling. There's a lady at my clinic hwo has noticibly swollen ankles and arms. I found this online at http://www.fmpartnership.org/Monog01.htm:
"Nagging symptoms, such as itchy, dry, or blotchy skin, may accompany FM. Dryness of the eyes and mouth is also not uncommon. Additionally, fibromyalgia patients may experience a sensation of swelling, particularly in extremities (i.e., fingers). A common complaint is that a ring no longer fits. However, such swelling is not like the joint inflammation of arthritis; rather, it is a localized anomaly of FM of unknown cause."
From what I read on the Web, you can get a small amount of swelling with fibro. If you have a lot of swelling, you could have RA and fibro; many people at my clinic have both. What you get with fibro is the *sensation* of swelling. I get this all the time. Also the burning, itching and localized pain that "moves around." If someone hasn't experienced this, I couldn't explain it. But you know if you have it.
I think you should see a fibro doctor. They take you seriously. They're interested in your case, YOUR case, not trying to shove you into a mold of someone else's case. They don't try to tell you how you SHOULD feel. (ie, 3 shots of knock-out medicine and you SHOULD be knocked out). My doc is concerned about how I AM feeling. It's a new world out there regarding fibro care. It's good for the soul to be taken seriously by a doctor too.
~nelly~
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Re: An idea
#283058 - 09/19/06 02:20 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks Nelly. I actually do have physical, noticable swelling in my hands and feet. I do have the general pain and fatigue but alos definite joint pain. What sort of doctor do I look for? My rheumy treats fibro but she belives mine is secondary and believe that when whatever IT is that I have is treated, the fibro will improve or go away??!
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