My rheumatologist visit, Fibro

[lisabar36]

I finally went to the rheumotologist. He did an exam, he looked at my list of meds, and he said, you are on way to many meds at your age. I said umm if you look at my daily regimen, I am only on Elmiron, Elavil, Ararax, and Neurontin. I need them for my IC, the others are PRN. So he looked up Elmiron, asked me what each med does for IC. He left the room frequently and came back with a page of notes, so I assume he was looking up stuff. lol I was there for this pain in my shoulders that I have when I sleep and it wakes me up if I am sleeping on one side to long, also my IC doc said he thinks its fibro. He ordered all kinds of blood work and he said the trigger point test is not the best diagnostic tool for fibro because one day you could be positive for many and the next day you may not be positive. He said pain varies from day to day and thats why he doesn't feel thats the most valuable tool to diagnose. I told him I honeslty think I have some degenerative changes in my shoulders because it runs in my family. I just wanted to know if they are ok. He ordered xrays because per insurance he has to order that first and after the xray he wants me to get an MRI. He was really upset about the ultracet, the dilaudid and the klonopin. He said you should not take those they do not help and are addicting. I said do you really know what IC is? He said not to much, and I said well its PAINFUL. I said I get sick from pain pills so you don't have to worry about me being addicted because I take them if I have pain so bad I can't walk, I said and the klonopin knocked me out for 14 hours and made me dizzy and I couldn't move for half the day so I have taken that since. I said but I may try them in lower doses as per my doc suggests that treats my IC, well I don't agree with it he said. He said take a higher dose of Elavil, thats the one thats going to help you the most with sleep and pain. So I am awaiting my test results, I see him in a month and I am still going to see him because I just want to know whats up with my shoulders, other then that, if I have fibro, I am on meds for it anyway, its the same as IC meds, I read the pamphlet. They could just switch the neurontin if it isn't working and they use flexeril sometimes. He said he thinks I have fibro, he will tell me next month, I said I do not think the pain in my shoulders is fibro. My other body pain I do think could be. And from his exam, I had nerve pain in my arm the whole day, my muscle in my left arm was spasming and my shoulders were aching. The next day it was gone. But that tells me theres something wrong with my shoulders. Ok just wanted to share! Oh and he said the best treatment for fibro is aerobics. I could just visualize my bladder pouncing from doing aerobics. lol I think I need my pelvic floor treated first. :) Lisa

[ICNDonna]

:grouphug: It's going to be a long month waiting for a diagnosis. I need to find a way to get more exercise without pain and the weather here is so bad it's hard to get outside.

Donna

[lisabar36]

Hi Donna and thanks, its been cold here in Pa also, its not like I can go out for a walk. I said to him, well I exercise in PT and do the home exercises, he said nope, that won't work, he said aerobics, I would never be able to do that without pain. I can't even do my little stretches without pain. He said a treadmill also is good exercise when its to cold to go out walking. I am not going to pay an outrageous amount to go to a gym just to use the treadmill. I can't even get around the mall yet without having to sit, I just started PT, I could see myself on a treadmill for 5 minutes at a time. lol I know its really not funny but my pelvic floor is extremely painful and thats why I do not exercise, once I get it under control, I will get exercises that I am able to that doesn't cause me pain. :)

[ICNDonna]

If you have any space in your home for a treadmill, you can usually pick one up cheap! It's one of those things people buy, don't use, then resell. When we have our Lions garage sale every spring, we always have at least one donated, which we sell for about $10 if we can!

Donna

[lisabar36]

Thanks again Donna! :) I thought of that and I know I have seen them used for much cheaper then new but my boyfriend said he thought they were expensive even used, but we have a thrift store near us and my boyfriend said he seen them in there before to. I am going to have to look into that. I wanted to add about the rheumo doc I seen, he was very nice in his ways of talking to me and he gave me this lab slip to have my blood drawn and it had all kinds of tests, and he told me to go to quest, I said I can go right to my doctors office and they will do it, and he said well I rather you not because I won't get the resluts he said, he said quest always sends him the results right away and he wants the results. So I went to quest, lol I think my doctors office would have faxed him the results but maybe he has had problems in the past. He seemed very thorough. He has a good reputation for a rheumo doc, I know that, but he seemed to point everything to fibro. I just question that with my shoulders, because some nights, I can wake up in severe pain from sleeping on my shoulder and some nights its not so bad. My boyfriend says I wake up frequently with the pain but I sometimes do not remember. Oh well, I will find out in a month. :)

[SandyRN]

I'm sorry you didn't get an answer yet. Don't you HATE doctor's who criticize what another doctor has ordered for you? Especially when he's got no clue what IC really is and how painful it is. Apparently he doesn't know how painful FIBRO is either!!! That's what I originally got put on pain meds for!!! It took me a long time to find a doctor willing to treat me but when I did the meds gave me a life back. I was literally bed bound by the pain. It's an all over, widespread pain that is really hard to explain. My whole body aches and the pain gets so bad that I still cry over it occasionally. Thank GOD for my doctors! Now that I have IC they raised my dosages and played around with different meds, including instills to help both the fibro and IC.

If you don't feel comfortable with him go to another rheumy. There are good ones and bad ones, just like all doctors. The last rheumy I went to tried to sell me a BOOK about how fibro pain was caused by repressed stress I'd built up since I was a TODDLER! I asked him how a TODDLER could have so much stress and what in the world would that have to do with anything so many years later. He told me I'd be surprised how much stress toddlers have! LMAO! He was an idiot and I left in a total angry fury!

Don't settle..if this isn't the doctor for you find another and another til you find one that actually knows what he's talking about. The last I heard the trigger point test was the standard for dx'ing fibro. It's true that some days you may not have as much pain as others, but these trigger points will always show some discomfort when manipulated no matter how bad your pain is in general. This might have changed over the years, but from what I've read recently it doesn't sound like it has. I do think the X Ray and MRI are a great idea because it rules out other skeletal and muscular problems.

I hope things work out for you! I know what you're going through. If he bothers you about your meds again you do NOT owe him an explanation. Just tell him that this is what your doctor has prescribed based on your medical problems and leave it at that!

Hugs, Sandy

[GriffsMommy]

Lisa,
I hope you get the answers you are looking for from all the tests he ordered. I can't imagine what that dr would say if he saw what I was on because I'm on a heck of a lot more than you! I agree with Sandy, even if he is known for being good at what he does, you have to feel comfortable with him or it doesn't matter how good he is at his speciality if he doesn't make you comfortable. Keep us posted when you get all the results back. I hope you don't have fibro and have to add another diagnosis to your list but it seems like he already thinks you have it so at least you have some time to get used to the idea before you get the final diagnosis.

[lisabar36]

Thanks Christine. Sandy, I agree with you 100%. I wondered when he said we need to change your elavil, I was thinking doesn't my IC doc need to know about this? Since he was the one who put me on it? But he didn't even ask me who that was. Originally I had an appointment with a neuro doc and I heard he was excellent so I was excited but then with my shoulders, I knew a rheumo would be the best and I didn't want to see 2 docs. I figured I could see one for both. I some days ache all over, I told him that, on days when I can barely walk, maybe that is the fibro along with the pelvic pain. I told him my hands even ache and its very hard to write and I used to love to write. I really wanted my shoulders checked though because some nights when I wake up, boy do they hurt depending on what side I am sleeping on, the odd thing is it isn't every night. Thank you for your suggestions. I plan to just see him and find out whats wrong with my shoulders, if anything. He gave me alot of fibro info to read. He really didn't agree with the pain meds at all. He said they don't work, but I said yes they do work. When I take a dilaudid, my pain is cut in half, of course I only take a 2mg. But it really does help when I need it thats for sure! :)

[A. Marie]

I just wanted to say, I understand the frustration that comes with seeing a specialist that doesn't know anything about IC. I had my first appointment with a Rhumetologist this week, he also thinks I have Fibro. Which is not much of a surprise to me, the problem for me is...we have all these specialists, neurologists who treat our chronic pain, urologists who treat our bladder, rhumetologists who treat our "associated conditions", and of course our primary care doctor who we see for other stuff. The thing is, I think all of my symptoms are related. I believe these many bodily symptoms have something to do with my IC. But how do we treat the underlying cause if we have to see a different doctor for each symptom? We end up just having to suppress the symptoms. I would really love to go to a doctor and here them say that they have seen at least more than 2 IC patients in their career. Anyway, that's my frustration at this time. Thanks for listening.






Thanks Christine. Sandy, I agree with you 100%. I wondered when he said we need to change your elavil, I was thinking doesn't my IC doc need to know about this? Since he was the one who put me on it? But he didn't even ask me who that was. Originally I had an appointment with a neuro doc and I heard he was excellent so I was excited but then with my shoulders, I knew a rheumo would be the best and I didn't want to see 2 docs. I figured I could see one for both. I some days ache all over, I told him that, on days when I can barely walk, maybe that is the fibro along with the pelvic pain. I told him my hands even ache and its very hard to write and I used to love to write. I really wanted my shoulders checked though because some nights when I wake up, boy do they hurt depending on what side I am sleeping on, the odd thing is it isn't every night. Thank you for your suggestions. I plan to just see him and find out whats wrong with my shoulders, if anything. He gave me alot of fibro info to read. He really didn't agree with the pain meds at all. He said they don't work, but I said yes they do work. When I take a dilaudid, my pain is cut in half, of course I only take a 2mg. But it really does help when I need it thats for sure! :)

[kelly_girl]

Lisa,
My family practioner ran tests for Lupus and Arthritis faxed those onto my Rhuemotologist. He used those and the "tender points" test to determine if I had Fibro. He also told me Aerobics were the best exercise...however for me at least this doesn't work at this time. When I do to much walking on hard surfaces such as malls, treadmills and even around the block it flares my fibro up. I won't put myself or my family through those kinds of flares again if I can help it, it is debilitating to me. Because of this he suggested using an eliptical or a recumbant bike.

On another note, seen my regular practioner today (couldn't get into the uro) IC is really flaring right now, nothing seems to be helping. We had a discussion about the Savella the Rhuemotologist has me on. She asked if he had done a test for vitamin D, saying alot of the pain from fibro can be caused from a lack of vitamin D. Dr's are finding out that there are so many health issues that are being exasperated because of the lack of this. Thought I would mention this, maybe it can help someone. I am now waiting to find this out for myself. Also, the Savella isn't great. I have been on it and am gaining about 3 pounds a month. I will be going off of it soon. I believe it is part of the reason for the IC flare as well.

Hope he listens to you and you find the reason for your shoulder pain soon!