Saw the Rheumy dr today
#239131 - 01/17/06 09:57 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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and I must say, I am not at all impressed or overly happy with his course of so called treatment!  I spent 3 hours yesterday typing out my medical history and questions. Biggest complaints right now are pain, especially in hips, back, knees, wrists, hands and feet-my hands and feet are super swollen-memory problems-continued iritis-did I mention PAIN-generally feeling like crap. He seems to think its all fibro and its all caused by lack of rem sleep. I take Xanax and two ambein at night time and snore like a champ according to my hubby but the dr says I'm not getting enough restorative sleep and thats what is causing all my pain??!!! He prescribe a drug called zanaflex, its a muscle relaxant that I'm supposed to take an hour before bedtime in addition to the sleeping pills. The dr asked if I had restless leg syndrome and I told him no. Will says though that my legs do twicth and jump a lot in the night.
He said that he doesn't think I have connective tissue disease but I may have rheumatoid arthritis because of the swelling. He x-rayed my hands and feet and I got another 8 vials of blood drawn and got to wee in a cup. He says he doesn't see any reason for the miscarriages although he admitted it all very well could be connected but that they just can't find the connection.
I begged him to do something else for the pain. I told him its pretty darned hard to get a good nights sleep when I can't lay down because my hips hurt so bad! I've been sleeping in the recliner a lot of nights. My hands are so swollen and hurt so bad, I can hardly type and can't make a fist at all. He then said that a lot of my pain is probably caused by my depression??!!! I told him if he was in so much pain, he'd be depressed too!! Not to mention that I just lost twins a month again! I told him I was seeing a shrink but that this pain started BEFORE I even got pregnant this last time. He just kept saying try this Zanaflex and come back in a month! I was crying when I left his office. The first time I saw this dr, last November, I really liked him. Don't know if he was having an off day or what but I feel like I was handed a cookie, patted on the head and sent out the door!
Linz and other fibromites, have you heard of this drug? Was I expecting too much? Is there something else he can do and isn't? I asked him about placquenil and he said I don't have Lupus so don't need it. Argh.
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Sorry your appointment wasn't very helpful. It does sound like you might be dealing with more than fibro though if there is all of that swelling. I hope you will be able to find relief. I think the Dr. is a bit pill happy though to add another "before bedtime" med to two others he knows you are already taking. And how can he know about your REM sleep without a sleep study? I don't know ANYTHING about rheumatologists, but that just sounded odd to me. I think I would have cried too.
I know this doesn't help, but just sounded odd to me. I am still remembering you in prayer. Hang in there! Answers can't be far away!! Hugs to you and DH!!!
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God is Faithful!
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Michele,
I was surprised that your doctor brushed off the plaquenil so easily. My rheumatologist was not sure if I have lupus, rheumatoid arthritis or psoriatic arthritis. He said it can take a long time to actually sort these things out since the symptoms overlap so much, but he said that plaquenil is an excellent drug for any of these conditions and is almost always the first line of defense when treating auto immune disease because it tends to have low side effects. Are you thinking of getting a second opinion? I wouldn't blame you if you wanted another.
It can take a long time even for an experienced specialist to figure out which disease is actually causing the problems, so I wonder why he's so closed about the lupus diagnosis? You do have UV sensitivity right? I don't know what to tell you Michele, but if you feel like you have lost confidence in this doctor, you should probably find another one. It also irks me when doctors want to pass off real pain by just telling us it's depression. I've been there before too. GRRRRR!
Let us know what you decide to do.
LAura
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UGH!!!!
Well, my rheumy wasn't any better. I never went back (never got a 2nd opinion either). He diagnosed me with fibro and gave me elavil and that was that.
I think you should go for a 2nd dx. ESP since you have swelling. And NO DOC EVER should tell us we are just depressed!!!!!! SOOO MAD!!!!
My urologist told me that my IC pain can cause depression. Not ALL Docs are bad...
I am SOOOOOOOOO sorry you just went through this! It makes me mad and sad...
E-mail me if you like...I'm here for you!
Sending you hugs, and lots of love....
Ruchie
P.S. Sorry if this made no sense. Major brain fog atm. Please just know I'm here for you and I care!! *hugs*
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Formerly known as Ruchie
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Thanks Bamagirl! It sounded funny to me too. I guess sleep problems and fibro go hand in hand but I agree, how does he know without the sleep study? I'm on so many "bedtime" pills I'm afraid if the house caught fire, I wouldn't wake up!  I'll give his pill a week or so but if the swelling doesn't go down and I don't start to fele better, I'll be calling him back! My hands are so swollen, I can barely type and forget about holding a pen or even tying my own shoes!!! My fingers look like little sausages!  
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Thanks Lauara. I figure I'll give this new drug a week or so and when I call for todays test results, if things aren't improved, I'll ask, now, I'll INSIST he does something more or I will see someone else. I have been told this is the guy to see and it took 4 months to get my first appt with him but I totally felt like I got the brush off today. Yes, I'm totally light sensative and noise sensative and told him that. Arg. I'm so tired of seeing so many different dr's and no one helping me. I feel like they are all looking at certain parts of me and not my whole body and when I mentioned this to him, he brought up the depression thing again!!!
Thanks for the support and listening to be vent! I'll keep you posted. I thought for sure he would at least give me a short course of steriods or something.....grr! 
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Thanks Ruchie!! I have the brain fog too so it all made perfect sense!  Lots of love and hugs! Can't type any more right now, my hands hurt too much
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Darn!
#239179 - 01/17/06 11:37 AM
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epa_ginger
Reged: 02/23/05
Posts: 1158
Loc: Chicago, IL
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It's so disappointing when you have expectations of something and it falls short. I don't know much about arthritis or fibro, so I hope some of the other girls can help you on that. Otherwise, maybe try his treatment for a month, and if that doesn't help, keep looking!
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Michele,
Something you said just really jumped out at me. You said your fingers look like little sausages. This is one of the first things that my rheumatologist noted was my "sausage digits". He said it is common in psoriatic arthritis. The info he gave me on PA used the term sausage digits over and over again. Did your rheumatoligist say anything about that symptom?
I'm not trying to play doctor on the internet but just thought it might help you.
Laura
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I didn't think the sausage fingers and toes were a part of fibro. He did look at them and comment on how swollen they were and said maybe rheumatoid arthritis but he never mentioned psoriatic arthritis. I'll have to google it as I've never heard of that particular arthritis. Thanks for the suggestion!! I just wish they could tell me whats wrong with me. If one more person says I'm just too depressed, I'm going to scream!!!! How can depression make your body swell and hurt so bad??? Grr! Ok, sorry, got off on a vent again!
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The rheumy I went to (referred by student health since they couldn't figure out what was going on) told me I couldn't have fibro because I wasn't depressed and because I was sleeping through the night (though I was waking up feeling like I'd been run over by a Mack truck!). I never went back!
Have you been able to try the magnesium/malic acid supplement yet? That might help with the muscle pain some. And I agree that the swelling IS NOT fibro related, it's something else. Grrrr, so sorry you have to go through this cr@p, Michelle dear!!!
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Melissa
Friendship is thicker than blood. ~Rent
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I haven't been able to find a magnesium supplement. Is it something special I have to order on-line? I looked at Costco and Rite-Aid and haven't seen anything that said magnesium on it??
I'll give this guy 30 days, until my next appt, to actually come up with something logical! I figure I'll give this new drug a try for a week or two and call him sooner than 30 days if it isn't helping at all! I agree, GRR!!!
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Michele, go see someone else. In the last couple years, I've seen a lot of different doctors, including some who have implied (or flat-out told me) that my problems all stemmed from depression. NONE of those doctors helped me. A doctor who falls back on blaming "depression" for your problems either (a) doesn't know enough, or (b) doesn't care enough. Either way it means bad news. All you get out of it is frustration, because every time you try to say you're not depressed, you get accused of being in denial!!
Have you thought about going to the Mayo Clinic? I know it's tough for you to get time off work since you're the only person in the office, but even if you had to take two weeks off work, wouldn't it so be worth it if they could figure out what's going on? At least go to www.mayoclinic.com and read some of the info on their website, if nothing else.
When other people asked me if I've thought about going to the Mayo Clinic, my instinct has been "No! Of course not!" -- but right now I am really strongly considering going. I have a friend who went (and got her problem solved after YEARS of fighting with doctors) and who keeps telling me I need to go. I do notice on their website under reproductive endocrinology (where I need to go) they say they're not taking any new patients for infertility, but I am not sure if that means just plain old infertility or if that means all reproductive endocrinology (since it is sort of all infertility-related). I haven't asked because that would mean I am seriously thinking about it and the thought sort of scares me.
I just hate that you're suffering when you've already had a hundred times your fair share. Give some serious thought to the Mayo Clinic. I'm sure that you, like me, would have hurdles to overcome -- probably mainly financial/timing -- but as I am trying to tell myself, think long-term instead of short-term.
Take care of yourself...
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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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I get mine direct from my doctor, so it may be something you have to get online....
Here's the stuff I take (yes, it's a bit expensive, my doc's office charges $45 for the same size bottle which is 1 month's supply, since I have to take 6 pills of it a day: web page
Here's what Linz takes: web page , there's a store locator on the left hand side of the page, so maybe you can find somewhere near you that has it!
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Melissa
Friendship is thicker than blood. ~Rent
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I agree with what Jen and others have said Michelle. It is well worth your time to find a doctor who isn't going to give you the easy answers (and you DESERVE it). You have been through so much and a doctor that empathizes with you and helps you come up with answers to your problems is out there.
Good luck, I'm thinking about you!
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IBS-A, with bloating and gas as my predominant symptoms
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Michele, I'm not a doctor, so take this for what it's worth. But I thought zanaflex is a muscle relaxant to be taken occasionally for someone who's pulled a muscle. At least that's what my doctor told me. They told me to try it (when they thought I just had a pulled muscle in my back), and it didn't do diddly squat for me! The only thing it did for me is make me feel drunk (very dizzy and uncoordinated) the next day---and it gave me horrible constipation!
Also, I read that it's not to be taken by pregnant women because they're not sure if it will do harm to an unborn baby or not. If there's any chance you could conceive, that could be dangerous.
It sounds like this doctor doesn't know what to do with you, so he's grabbing for straws. If I were you, I'd get another opinion. You deserve to have someone who will give you the care you need.
Hang in there!
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Yes, Jen, I have thought about the Mayo Clinic or University of Michigan but as far as the "fertility" issues go, I'm just not ready right now. I've been trhough too much and the pain is still too much to get involved in that right now. As far as this "fibro/arthritis" stuff goes, definitely! I figure I'll give this dr 30 days and then I'm going to get serious if things haven't improved!
I know that I am depressed, who wouldn't be after what I've gone through but come on, I'm not THAT depressed and I just can't believe depression can cause 5 miscarriages, all this physical pain and swelling. Depression can't cause iritis either!
Luckily, I have great insurance, so the money issue wouldn't be too bad but getting the time off work would be difficult. However, I will do what I need to do to start feeling better! I've felt too bad for too long and I'm ready to feel good again!
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I'd get another doctor.
But so happy you don't have lupus...that's good news!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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My hand hurt too much to type last week Try not to overdo it...I know it's SO HARD when you want support but you hurt...a bad, bad cycle  *hugs* *hugs* *hugs*
We're absolutely here for you...even through the foggies...so know how much you're loved!!!
Take care and let us know how you're doing when you can...
Much love...and chasing your froggies away...
Ruchie
P.S. Sleeping well DEF helps with the pain! I agree BUT it is NOT the end all be all...AND...the doc did NOT have nice bedside manner and that is just not OK imo. I think you're such a smart lady to give it a week and then see what to do (but PLEASE don't hurt yourself and if the sleep meds do something nasty call the docs' office right away)...I was unwilling to try what the doc says without quitting right away. Good for you Michele for trying if that's what you think is right!!! *hugs* You prove your grace, dignity, and preciousness over and over again...
Love you!
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Formerly known as Ruchie
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Wow! I didn't know this is what Mayo Clinic did!! Thanks for the info. Jen! *hugs* Are you seriously considering going? I've heard of it...but never knew what they DID...
I'll go with you ladies!!! I'm only half joking...
*hugs* Whatever you decide please know you aren't alone and that you are NOT depressed and therefore sick ok?
Love you!
Ruchie
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Formerly known as Ruchie
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Sorry to hear about your doctor appointment. I hate the fact that any sign of depression makes some doctors not take you seriously. The only thing I can think of is that depression really messes with your sleep, and that can cause other ailments. HOWEVER, you have way too much going on for sleep to be the only culprint.
Give the meds a try and see what happens. Maybe the doc just wants to rule things out. Feel better!
Hugs,
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Christine
Those who can do; those who want it done better teach.
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Grrr. This happens alot. If he mentioned REM sleep then he doesn't even know what he's talking about....it's Stage 4 sleep that Fibromites often don't get enough of NOT REM. And that isn't the cause of everything! And nor is depression....that is such an outdated notion.
And you have to have something other than Fibro as the inflammation is NOT a Fibro thing and nor are miscarriages.
I'll come back to you with ideas....
In the meantime, take Tylenol everyday...it'll take the edge off. I don't know what strength normal Tylenol is but you want to be taking the maximum dose, so that's 1000mg every four hours and a max of 4000mg in 24 hours ( so you could take 5 doses of 800mg with 4 hour spaces in between and sleep-time). Mel's posted the site for the supplement I take so have a look at that.
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Thanks Christine. I did sleep like a rock for several hours last night so maybe it will help.
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Hey BL, you're right, from what I read on google its just a muscle relaxant and I did read that its a class C pregnancy drug but I'm not trying right now so I'm not overly worried about that at the moment. He reasoning was that because my muscle spasm and tighten while I sleep that I'm not getting REM sleep. It did make me feel a bit drunk like you said however I did sleep like a rock for several hours so maybe it will help. I'll give it a week or so and see. He did order a bunch of blood work and took x-rays so maybe its just temporary until he figures out what is going on, at least thats what I'm hoping!
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Thanks Ruchie. I do admitt that I am depressed but like I said, who wouldn't be after what I've gone through. However, I also KNOW that I AM sick as well, the stupid dr's just aren't smart enough to figure out whats making me sick yet!
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Thanks Snowy and I agree, I deserve a good dr. I was really confused yesterday when he acted the way he did because my first appt with him went so well and he seemed really nice. I'm hoping he was just having a bad day yesterday. If things aren't better and he doesn't do something better when I see him again next month, I'm definitely looking for a new dr!
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Yeah, I didn't think swelling was part of fibro at all! He did say may rheumatoid arhtritis and di run some more tests so I guess I'll give him until the tests come back and see what he says. I'm definitely going to look at the supplement you guys take. I have been taking some tylenol but not the maxium dose so I'll up that for a few days and see if it doesn't help some. That is, if I can get the stupid child proof top off the darned tylenol bottle, struggling with it right now...ok, got it off and popped two!
I did seem to sleep better last night and may feel a LITTLE better although the swelling is still there. I just wish I could find a dr too look at the BIG picture and not just pieces and parts of me!!!!
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Thanks Beth! I'm glad I don't have Lupus either but it would almost be better at this point for them to be able to tell me whats wrong. I definitely don't want to have anything serious wrong but it might be easier to deal with you have this diease and thats why you feel like you do and thats why you can't have a baby but for all these supposed specialists to say, aw well we don't know, just sucks!
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Hi Michelle,
I'm so sorry to hear things didn't go well for you with this guy. I was reading through the chain of responses and I agree with Linz - get a new guy - I don't think this one really has a clue. He's grasping at the fibro thing because it's an undefined diagnosis and he therefore thinks he can throw all your problems into that basket. Linz also reminded us - rightly so - that Fibro is NOT a problem of REM sleep. People with fibro often have trouble getting beyond the REM stage which is where our bodies find the most restorative sleep. I know that and I don't have fibro, nor have I ever really studied the condition beyond what I read here from you fibromites - so a doctor should defenetly know that!!! As for the depression thing - make sure that whatever doctor you are dealing with realizes that if you are suffering now from depression, it is because you are in pain and because you lost your precious babies - depression is not a root cause of your physical problems. It may be making some of the symptoms of some of your problems worse than they would be if you were not in constant pain and were not mourning a great loss. You are seeing a shrink to get through those problems and it's his/her job to deal with that. It's your doctor's job to find the physical root cause of the symptoms that you are suffering and the cause is not depression. It's NOT all in you're head sweetheart! I hope you can feel more comfortable soon though and let us know how things turn with this.
Hugs,
Min
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I was on a muscle relaxer called, Flexaril, I supposed to take it before bed along with my sleeping pill and it was supposed to help with pain from fibro and sleep. But I was so groggy in the mornings from it I had to stop taking it.
Christie
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Christie
~Hoping and Praying for Sleep!~
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Thanks for the info! I found it here http://www.vitacost.com/CountryLifeBiochemTimeReleaseMalicReliefFormula on sale and ordered a couple of bottles!! 
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He said this one could make me groggy in the am but it didn't today, at least not anymore than I usually am so I'll give it a week or two and let you know how it goes!
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Thanks Mindy! Youre absolutely right! My depression may be making some of the things worse but I KNOW its not the cause of all my problems!
I did sleep better last night and do feel a LITTLE better today although my hands and wrists are still swollen and hurt. I'll give it a week or two until my other test results are in and if things aren't better and/or he doesn't do something more, than I'll find another rheumy!
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Yeah, that's exactly what you need from a rheumy with your kind of thing. It may take a few before you find the "one". 
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I didn't mean you should go to Mayo for the fertility stuff ... I mentioned that in specific because I'm afraid they aren't taking new patients and that's actually where *I* need to go! I just meant overall since you're struggling with getting any answers on the pain and inflammation and all that. Maybe we could go at the same time and go hang out each night comparing how many vials of blood we each had to give.
Glad to hear you seemed to sleep a little better last night. Hopefully that continues!!! It's crazy, I am so exhausted all the time but I have a really hard time falling asleep and staying asleep. I'm on a pretty hefty dose of Vicodin right now for post-surgery pain management and it seems I'm falling asleep every hour of the day EXCEPT for when I'm in bed. Ugh!!
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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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The Mayo Clinic does basically everything. A big reason I'm kind of resisting going is because I sort of have this mental block against it -- like at the back of my mind for some reason I am convinced that the Mayo Clinic is only for rich people with cancer. I must've read that in a sappy teen romance at some point!!
I checked with my insurance company and they do cover Mayo. I think that if my appointment with my gyno next week doesn't go well that I am going to go ahead and do it. I imagine it takes ages to get in anyway, so that leaves me plenty of time to chicken out.
There is also a Mayo Clinic in Arizona, though I have no idea how close it is to where you're at. Have you also thought about going? If you think your doctors have a good handle on everything, I guess there isn't really a need, but if you're as frustrated as I am, I would seriously consider it.
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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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