Angry with my rheumy (rant)

[tangowhiskie]

This often seems to be a popular topic, but I am so frustrated with my rheumy!

Of all my visits, only my first one was good.  I don't feel like he listens to me.  He didn't believe that I have SjS, but I proved him wrong by getting a Schirmer's Test at my plaquenil eye exam and I scored a 4-4 so now I can say I officially have SjS.  No thanks to him, btw.

Today was my fourth visit.  I went because I feel like I'm flaring.  I've been tired for a week now, sleeping a lot.  My muscles are very very sore.  I thought my joints were sore too but after he examined them, he didn't think I had any joint pain.  Back in June I had these same symptoms (to a more severe degree) and my PCP tested my ANA and it came back positive.  My rheumy told me it was probably a flare (since this is the event that got me referred to him).  So I used the same symptoms/logic to bring myself into his office today.

His guess?  I have "emotional" problems and it sounds more like "depression" and he doubts that SjS is causing it.  Just because I've been started on Lexapro doesn't mean that I'm a "basketcase" and I feel like my rheumy doesn't understand women.  For once I can say that I have been enjoying a low stress level recently.  I've been hanging out with friends, making plans, keeping a positive outlook as much as I can, so I was offended when he suggested this.

He also asked if it could be my thyroid and that's what I thought last time and I was wrong.  I don't have any of my usual bad thyroid symptoms so I doubt that will come back as the issue.

In the end, he tells me that he doesn't know what's causing it, but gave me three weeks worth of Lyrica to try.  I'm glad to try and get some relief for my muscles because they are so so sore, but at the same time, I'm upset at what this guy thinks of me.

I thought the years of medical mystery were going to be over once I got to see this rheumy.  I thought wrong I guess

[Katybarstool]

TW your rheumy sounds like mine - very unpredictable! I wondered whether you have starting taking any other meds recently. I know that some meds, particularly Amlodipine and Ramiril caused me real muscle pains.

I hope your three week prescriptions helps.

Kathyx

[kwolfsheimer]

I would double check the Lyrica.  I know that it helps some people but I have had docs that push the Fibro drugs when they don't know what else to do.  Lyrica has some bad side effects so I would stop the drug if you notice any swelling or weight gain.

Your doc and my doc must play golf together! 

[tangowhiskie]

Thanks for your replies.  I'm in a lot of muscle pain right now... seems to have gotten worse as the night wears on.

Hoping the Lyrica helps.  I don't even want to move.

[irish]

I don't know what it is about rheumies, and some people are lucky to have a good one, but my experience showed me that all she was interested in was my joints and pain and checking me for fibro. I could sit there and tell her all that was bothering me and it seemed to go right over her head. When she told me that I took too much of her time (and she was one hour late for my appt) I never went back. Irish

[Spider]

Hi Irish

I was just reading your post and a bad thought popped into my brain. I have decided that I would share it with you all.

Do you think that all these Rheumies upset us so that we won't go back. They quite clearly don't like a challenge, or listening or keeping up to date with there education, its just easier to get rid of the difficult patients.

[Lesleybird]

   It's just that there are very few treatment options for Sjogren's and the really heavy duty treatments are only used for organ threatening disease because the side effects are so bad.  Mainly they only have plaquinel and meds like Lyrica and antidepressants to treat the pain, and meds to help us sleep for non organ threatening Sjogren's. So no wonder most patients think that their doctor's are not doing enough.   Lesley

[HL in NY]

Sorry about your Rhuemy. 

I take Gabapentin and I've found it to be very helpful for pain.

2 Suggestions for you.

1: Celebrex is my first line of defence against inflamation. It really helps, and inflamation is somehthing the docotrs can test in bloodwork, which makes them happy.

2: Sounds weird, but Tart Cherry Juice has been proven to help with joint pain. And you don't need a 'script. The recommended dose is 8 oz. a day. It's worth a try and it's certainly cheaper than the drugs. Here's a link: http://www.healthcentral.com/rheumatoid-arthritis/c/38/27582/cherries

Good luck to you and I hope you feel better.

[Sissy]

Sounds like this boat we are all in might sink soon. I don't think we should all be having the same problems.....knowone in the medical community seems to listen, nor do they "get it".  I wonder if a diagnostician would be a better choice for getting some treatment and diagnosis for those who don't get one. Unfortunately their isn't one in my area, but some of you might find their is one nearby for you. I have no idea if it would require a referral, my guess is if your insurance doesn't require one, a person should be able to make the appointment themself. I am curious if anyone on this forum has ever seen one and if they were able to get concrete advice and treatment. Sissy

[Katybarstool]

Kamie

Lyrica is Pregabalin and Neurontin is Gabapentin - at least those are the names used in the UK.

I second the suggestion of Celebrex. I've been taking 100 bd for 3 years now, and my pain has never been unbearable in that time.

Kathyx

[tangowhiskie]

Two nights on Lyrica so far and I have not experienced any relief from my pain.

My back feels like a brick wall, my muscles are so tight and sore.  Both nights I have woken up for reasons unknown, and feel like I can't get back to sleep.  Last night I felt like my muscles were crawling all over my skin.  I woke up with a horrible migraine.  I don't think this medicine is working for me at all.

Luckily I have an appt with my PCP this morning - and he is amazing so I hope he can help shed some light on the situation.  I'll ask him about Celebrex - thanks for your suggestions.

On Monday my rheumy did blood work and my ESR came back at 24 and my CK was in the normal range.  My bloodwork doesn't seem to show muscle inflammation so I'm confused on what's causing the muscle pain.

But I'm not overly emotional or overly stressed so that can be ruled out.

Ugh. 

[Jag]

I had a horrible time with lyrica. I got dizzy, and had some of the same 'crawly' sensations. I do take neurontin without any issues for PN. When I finally convinced the doc I had to stop the lyrica, I had HORRIBLE withdrawl symptoms. More nausea, dizziness, zapping tingly feelings, hot spells, etc. It was a living nightmare. They never told me that you can't just stop taking it cold turkey! I take klonopin at night to deal with the fasciculations in my legs. You can literally 'watch them twitch' without it. I've been on it for years... same dose, etc. I put up with neuros and rheums. saying it was all in my head, I was depressed, I was stressed, etc. I got sicker and sicker while they played their games. Don't let anyone tell you that you're not in pain. However, I will say that I've found neurontin to be good for nerve pain, but NOT for other types of pain. Of course, since I had major back surgery and it's made of metal now I've been on narcotics for awhile. However, when your body becomes used to that med or dose, trying to get anyone to change it takes an act of congress!