Seen A Rheumatologist...

[num1habsfan]

UGH SO FRUSTRATING!

Okay so first he asks me to give all of the details of where I'm feeling pains and such. Asks any other conditions I have...then he presses on the joints and can see they are touchy everywhere. But that's when the appointment went south...

He gave me a prescription for Amitriptyline 10mg, which apparently an anti-depressant but is used to relax muscles. He thinks its a lack of sleep that's causes all my joint problems, and that its the muscles, not the joints. He tried to convince me that my medical conditions acting up are no excuse for not getting the 8 hours of sleep or wahtever a night. Not only that, he says people should not get up during the night to use the bathroom! I felt like saying would he prefer me to crap myself?? He also believes that napping is a bad thing because it screws up your sleep.

He asked what I take when I feel pain and I told him Tylenol 3, which he is apparently VERY against. He says its the worst thing a person could take, yet anytime I have ended up in the hospital or at my family doc for the severe back pain it's what they gave.

That isn't the worst part. We all know that celiac greatly increases the chances of having arthritis of some sort. My family has a history of OA and RA. But no...according to him, Celiac does not trigger any other conditions !!!!.

So anyways, he found it interesting that I have some psoriasis. He wants me to go for x-rays to rule out Sacroiliitis. I hope that is it...I am tired of doctors and specialists not listening to me, my family believing what these supposed pros say, and getting "negative" test results for everything.

I have to go back to see him on May 14th to discuss the x-ray results and see how the pills worked. *sigh*

[tarnalberry]

He may not have been admonishing you for going to the bathroom in the middle of the night, but rather pointing out that it is abnormal to need to need to go to the bathroom in the middle of the night while you sleep. (Because that's true.)

I suspect that there was a significant communication issue between the two of you, because sleep problems *can* cause a number of the symptoms you are talking about, and it's important that the two of you work on this together (or with whatever doctor you do work with). Have you asked him, or did he suggest, a sleep study to examine what issues may be affecting your sleep?

[Takala]

Aye yup. They're clueless.

Been there, done that, didn't even get the tee shirt.

When you go back tell him you met somebody that always tries to get only 5 to 6 hours of sleep when she's going to do something physical the next day, and needs to wake up looser than normal. When Clueless acts horrified, tell him that's what real long term sero negative arthritics do so they don't stiffen up.

The song goes "and I'll sleep when I'm dead."

Trained nappers can wake themselves up after a half hour, too.

I do sleep like the dead, when I do, because I exercise in the morning and late afternoons/early evening. Try it. If you are tired enough, you sleep. This concept seems to have been misplaced during the last 30 years. Exercise, preferably outdoors, warm bath, warm drink, soft snuggly blankie, out.

Any male over 45 wakes up at night to use the pottie. Is this abnormal? No, it's because of their prostates. That is why women have to train them to put the seat back down. You notice how men are not proscribed Amitriptyline for this habit.

I am glad to hear from yet another loon that diet has nothing to do with our other auto immune diseases. Malabsorbtion of nutrients is harmless. Non steroidal Anti inflammatories that make holes in the damaged guts, and cause depression as a side effect, are probably harmless, too. Tylenol, which merely threatens the liver, is evil. Bravo, medical profession !

[mushroom]

My first rheumatologist was pretty clueless too. (I have psoriatic arthritis). Don't know why I stuck with him so long--old school, retired from his hospital practice but still in private practice. I now see his partner, a really caring woman who knows what's what. She is totally up with the play. However, I must say that thanks to this forum I am either up with her or ahead of her. Just came back from my PCP who had received a note from my rheumatologist (who called me last night, incidentally) asking that my B12 and folic acid levels be checked because of my macrocytosis in the latest blood work. Well, hey, this has been there for some time, and 6 weeks ago I asked my PCP to check those levels and have been on folic acid and B12 shots for a couple of weeks, along with Vitamin D. My PCP wonders, I think, how come I am so smart. But it's all thanks to you guys here!

Not only that, he says people should not get up during the night to use the bathroom! I felt like saying would he prefer me to crap myself??

He obviously doesn't know about idiopathic edema either; I am up at least twice during the night because it's only when you lie down that the fluid becomes available to the kidneys for excretion (sorry, probably TMI), but I also take diazepam to get back to sleep. I think the man's a fool. Can you get rid of him?

And what did he propose you do about your pain waking you up, if anything??? When my arthritis acts up the only thing I can take to get some sleep is Panadol, which is like Tylenol, because I don't tolerate other pain relievers. I am not familiar with Tylenol3. Does it have codeine? Maybe your rheumy has never experienced pain.

So anyways, he found it interesting that I have some psoriasis.

Did he not consider psoriatic arthritis as a differential diagnosis?

I just can't believe some of these practitioners. Do they live in the real world?

I know you are in Canada. Can you go private and get a real doctor, or do they all work for the NHS? I go private here and find it is worth it for important things like rheumatologists. Or do you have to have a referral? It used to be like that here.

Please don't put up with this guy if you can avoid it.

[ravenwoodglass]

He does sound pretty clueless. However you might want to give the Amitriptyline a try for a week or so. It is an antidepressant at higher levels but is often used at the low dose he prescribed for things like fibro to help as sleep aid. I don't usually use script drugs but this was one of the most helpful that I was prescribed before I was diagnosed. I never had any of the 'hangover' type problems that come with many things prescribed to sleep and it did help a bit.

Many rheumys don't have any idea that celiac can effect the joints and muscles just as many neurologists are clueless about the effect on the brain and nerves. My personal thought is that a lot of that is due to the all over inflammation that gluten reactions can cause in addition to the autoimmune aspect. Perhaps you might be able to educate him a bit? Could you bring in some info from respected web sites like the NIH that he might look at?

[num1habsfan]

Man do I ever feel that hangover from that pill...I woke up with a pounding head, super dizzy, and wanting to puke. I'm still sooooo dizzy.

I'm glad that I'm not the only one who has had problems with a rheumatologist. I wish there was more options, really, but you do need to be referred to see one, and it seems like this is the one in the city I'm going to university in (or at least it is who my family doctor referred me to).

I don't agree with the not getting up during the night thing. To answer tarnalberry's question, he did give suggestions about sleep but I don't agee with them. I tried to explain that the only times I sleep poorly is if I either have Celiac (which doesn't act up too often), the mystery IBD, my gallbladder, or arthritis in a flare. Lately almost all of the sleeplessness has been gallbladder caused. I definitely have no control when ANY of these 4 things attack me. So really I can't blame myself. I try to sleep, i don't sit up all night on purpose. I can't choose when my health is going to want to act against me.

I'm someone who has to get up during the night for the washroom. I dont get up for other reasons (unless I'm in pain) -- I dont walk around staring at the clocks or anything. The only time I pay attention is when it's close to time to wake up..then if its not too soon i'll just get up before my alarm goes off.

As far as for when I do get attacks, he didn't give me any actual suggestions for what to take. Mushroom: Tylenol 3 has codeine No. 3 in it. You can only get it by prescription and a family doctor only prescribes it when a person REALLY needs it. It is what I have been prescribed for both the back and gallbladder.

He didn't mention anything that it could be psoriatic arthritis..like i said, he thinks maybe Sacroiliitis (and if its not that, he's convinced its just the muscle achiness).

Going in just to get long-term management of Lumbar Facet Arthritis has certainly turned into a lot more than I expected...lets hope that once he gets a copy of the x-rays for himself proving I do have that arthritis he'll actually believe me!

[mushroom]

Oops, my bad! whenever I see rheumatologist and arthritis in the same paragraph I always assume rheumatoid arthritis. It is SO confusing that they call both osteo- and rheumatoid diseases arthritis when they are in fact so different.

On the other hand, my rheumatoid arthritis first manifested itself in the muscles and connective tissue in my neck and shoulders and was initially diagnosed as polymyalgia rheumatica because "you don't get rheumatoid arthritis in those places, only in your joints." Then he decided I had rheumatoid arthritis after all, once my fingers and toes were also affected, then oligoarthritis and/or polyarthritis and "possibly" psoriatic arthritis when the psoriasis appeared. And I still get it in my upper arms where there are no joints! I don't go to him any more.

I thought Tylenol 3 might have codeine. My sister takes Panadeine (same thing basically), but codeine makes me vomit! Alas!

Have you tried Valium (diazepam) for sleep at night. That helps me a lot and I don't have any hangover. But then again, I react differently to most meds than others, so one can't generalise from me.

[num1habsfan]

So here's a bit of an update: I have had a constant headache and nausea (no joke) since being on that medication (and its already been almost 2 weeks on it). I remember he said start the first week on one, then go to 2 pills a night. Should I do it??

[Juliebove]

Hmmm... I am surprised he didn't think you had psoriatic arthritis. It's the diagnosis given to me by the rheumatologist I saw. I don't believe he was any good. Although he put that down on paper, he told me I had fibromyalgia and kept wanting to treat me with antidepressants. They only left me feeling sick and awful.

How is your thyroid? When mine is out of whack, I have terrible pain. I also have to use the toilet more often. And it messes with my sleep.

I also found out that I have sleep apnea. This is why I feel the need to nap during the day.

[mushroom]

So here's a bit of an update: I have had a constant headache and nausea (no joke) since being on that medication (and its already been almost 2 weeks on it). I remember he said start the first week on one, then go to 2 pills a night. Should I do it??

If you're feeling that bad on one, I can't imagine what you'd feel like on two! Can't you call his office and ask for something else that doesn't make you feel so bad.

I remember back in the good ol' days when I was diagnosed with fibromyalgia. I was prescribed Elavil (or something similar, this was back in the 80's) at a low dose that was supposed to help me sleep. Sleep!! Sheesh, that stuff made me so damned depressed I was crying just driving to work. Dropped that stuff like a hot potato. Of course, like I said, I have paradoxical reactions to things; the sleeping pills they try to make you take in hospital keep me awake; I refuse them. Maybe you have similar variant reactions. Anyway, I wouldn't take any more Amitriptyline and would try for something else. That's why I stick with the Valium; I know it works for sleep for me.

[num1habsfan]

Hmmm... I am surprised he didn't think you had psoriatic arthritis. It's the diagnosis given to me by the rheumatologist I saw. I don't believe he was any good. Although he put that down on paper, he told me I had fibromyalgia and kept wanting to treat me with antidepressants. They only left me feeling sick and awful.

How is your thyroid? When mine is out of whack, I have terrible pain. I also have to use the toilet more often. And it messes with my sleep.

I also found out that I have sleep apnea. This is why I feel the need to nap during the day.

My hypothyroidism still likes to act up on me. I randomly get 'attacks' where I can FEEL my thyroid gland is swollen, but when i get bloodwork done and such (and go to ER) everything comes back completely normal. I haven't had an attack like that in awhile though. But if its out of whack I usually sleep more. If the undiagnosed Crohn's or whatever is acting up, or if the gallbladder is attacking me (which happens almost daily now), I have to poop frequently in the middle of the night (which of course messes up my sleep). With the weather out of whack (going from -47 C windchill two days ago to -3 C windchill now) my back is starting to hurt me again, meaning another spasm caused by the lumbar facet arthritis is in the works.

I am also surprised he didn't say psoriatic arthritis. I have had both psoriasis, and arthritis, since getting Celiac 6 years ago. Maybe he just doesn't want to believe that people can get such a thing (or arthritis period) starting when they're only 19?

I don't like his theory about not napping. I've been really sick with a fever and bad throat (waiting for test results to come back to see if it's strep throat because its not tonsils), so I napped for about 2 hours last night, and fell asleep again at 1, and was able to wake up (and feel awake!) at 7 a.m...if I wouldn't have napped, I know that wouldn't be the case.

Maybe I should try 2 a day for a bit just to prove him wrong...like if I tell him how much its affecting me being on the double dose, or how much worse it is than taking one 1 per night, he'd believe me that i shouldn't be on them and tell me to quit...or should I not do that, either?