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Anxious! Rheumatology Apt on Friday... any tips?

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Posted 5/5/2011 3:44 AM (GMT 0)
I know a lot of you have been so supportive to me over the past week especially with all I have been through. I am yet undiagnosed with an autoimmune disorder of "unknown etiology" and see a rheumatologist Friday and am really hoping to get some answers... I have been through 2 brain surgeries for a pituitary tumor, had osteomyelitis in my hip at age 10 and had so many weird things come up my entire life... but since the birth of my son in Jan 2010 I have been progressively getting worse with crazy symptoms from numbness and prickling in my limbs, to urinary frequency/extreme thirst, dizziness, swollen lymphnodes all over, lesions on scalp/in mouth, bruising, swelling all over, and more recently severe bone pain and now especially one that runs from inside my head down my neck, spine, and into back of legs... I was recently diagnosed with interstitial cystitis, but that does not cause many of these symptoms, and now worse than ever is the weakness.

I went to the ER 3 times in the past 2 weeks for large steroid injections (which greatly helped the pain and all symptoms), and finally had my daily pill dose of prednisone increased from 10 to 40 mg this week, helping a lot. My endocrinologist from last year's episode (where I had no pain at all incidently) called today saying that she thinks I may be in adrenal failure and to be sure to let my other doctors know that they need to keep me at the same dose of steroids I am now and not decrease them without an adrenal function test... this really scares me. I am still in my late 30's and have a 16 month old son and this is all getting so overwhelming and I am frankly getting depressed now. I have fought feelings of depression for months now with this situation telling myself it will get better--just wait till the next doctor visit--only to be let down and let down each time by another doctor who passes me on to another and another doctor. I am so scared that this doctor that I have put all my hopes in now will do the same and I really don't know where I will turn after that if it does not go well. I hope he can tell me what is wrong with me!!! It is so frustrating and scary having all these things going on and no one to tell me why or what it is!!

Does anyone have any thoughts on how I should approach this visit? I have been getting weaker and weaker the past few days, although thankfully the pain has not increased significantly and have been fairly comfortable for the most part since my last ER visit where they increased the steroids. But I am really worried. I also have a pain medicine that helps a lot in between and have some left but they won't last forever obviously and what if this doctor just passes me on like the rest and does not find an immune suppressant or steroid or other alternative that works and does not address the pain I am having as it gets excruciating without the steroids minimally? I honestly don't feel like I can take too much more of this. I am 2 assignments behind on my class in the doctoral program and today was the last day of class--and I was too weak to even really work on it today at all. I am grateful my professor gave me an extension--but how long can I keep living this way? It is not even really living! I want to run around with my son (16 months old now) and play with him and chase him when he wants his mommy to... and I am almost completely stuck in bed most of the time. I have relief for a day or two after each steroid injection and then back to getting weaker and weaker and in more and more pain.... I live for the good moments and then cry the rest of the time because I can't take it any more. I am so very sad and frustrated lately. I am just wondering if anyone has any advise for me how to handle this visit as I am so nervous and feel like I will clam up on what to say to the doctor when I get there. I have some pictures this time of some of the symptoms I have had since they come and go at times so he can see all the stuff that I can show him that I have when I am not on the steroids.. but I am worried. Please can anyone help me? Thank you! Nicki
Posted 5/5/2011 4:00 AM (GMT 0)
Hi, Niki,

I think that writing down your symptoms...and/or keeping a pain journal for the doctor to review would be a good idea. Be honest with your new doc, and let him know everything so he has the information he needs to help you. I'm sorry you are in so much pain, and I hope your appointment goes well. Please try to relax a bit. Seems like stress makes everything worse, and you have a lot of stress in your life right now. The unknown is particularly stressful. I hope you get some answers and some relief soon. Please let us know how your are doing.

Hugs,

V
Posted 5/5/2011 4:36 AM (GMT 0)
Hello Niki!

I took the evening off to spend some time with my wife, and was headed to bed, when I thought I would take one last pass and take a peek at the forum here.

As I read through your post, I thought "Lord have mercy" you have certainly had, and are currently having your share of serious problems...and one after another as well! I see that you are a young mother with a 16mo old son, and that in itself, along with all of you're medical problems, and then school on top of it all....would be enough give the emotions the old "one, two punch".

I cannot tell how badly we all feel for you, but trust me it tears us up to read of problems like this, and the first thing we want, and will do for you is to rally around you. By now you have come to realize that we are family here, and family is important to us.

As I read your plea for a good suggestion or two, for Fridays appointment, it struck me that if it were me, I think I would read this post to your Dr. Ask him for 3 minuets of his time, and then let her rip! You are scared and you have every right to be, especially since several Dr's have thrown up their hands in puzzlement, and no diagnoses has been offered to you. I do see time after time, patients worrying about what a Dr may, or may not do for them, but in the end, the worrying will absolutely not make things better. Your feelings are quite normal though and I, nor anyone else, blame you for it.

As was stated before, be honest, ....... open up and share everything with this Dr. Take notes with you, so that you will not forget what you wanted to visit, and ask him about. By all means, DO!... take a family member with you too! Someone who knows you well, and understands what you have been going through.

I wanted to ask you, who has been scripting your pain med's? Is it possible to ask them for more med's when you run out? I'm more than a little concerned about all of your symptoms, but am at a loss as to what may be causing them. I'm not sure you're going to get all of you're questions answered tomorrow, so again you may be forced to be patient a while longer, especially if testing needs to be done. Just be prepared for it, if they indeed need more test done.

I wish you the very best of luck and well wishes, backed up with Prayers for you!

Take care, and as always, we would like for you to keep us updated.

Good night, and I hope you can get some rest tonight.

In all sincerity!

SEwink
Posted 5/5/2011 5:21 AM (GMT 0)
Nikki,

I'm so sorry for what you are going through.  I know what depression is like, as I have dealt with it for over twenty five years, but mine is controlled by medication now, so I thank God for that.

Nikki, did you know that steroids can make you depressed?  The higher the dose, the more depressed you can get.  Please discuss this with your dr. at your next appointment.  Maybe he or she can give you something to help.  I have been on the receiving end of increased depression as a result of the steroid roller coaster, myself.  Also,  I am a retired RN, so that's where I am coming from with this information.

Please know that I will pray for you and hope that your appt. goes well and that an answer is forthcoming for you.  Don't give up.  You will find out what's going on.  It takes a lot of patience with chronic pain, but you will get there.  Meanwhile, lean on us and post often.  We will be here for you collectively.

God bless.

Lindaloo

Posted 5/5/2011 5:25 AM (GMT 0)
Niki,

I feel for you, I do.  All I can advise you to do is be really upfront w/ your doctor re: all of your concerns. 

I, too, have had more "weird" things w/ my health than I could ever explain to anyone.  I've had meningitis 2 times.  I, too, have adrenal issues (I'm hypoadrenal).  I have a growing cyst on a gland in my brain.  I could go on and on and on.  I'm also the mother of 8 children who need me....and, I'm only 37 years old (soon to be 38).  So, I absolutely "get" much of what you are saying. 

I've had great success in writing down everything for a doctor.  I've done it in letter form, or I've just jotted down notes.  Like SE said before - even if you have to print out your post here - I would do it.  Express every concern you have.  Be assertive and demand that you want to get to the bottom of what's going on w/ you.  I also think you should try to take someone w/ you that knows everything going on w/ you.  My husband used to go w/ me to all my appointments initially.  I think the doctors respected the fact that I had someone else there w/ me.  I know this is not feasible in all cases, but if it is possible, I would do it.

You have to be your own best advocate and let the doctor know what's going on.  I think you can do it... even though I hear frustration in your post, I also hear strength.  I will keep you in my thoughts and prayers and hope Friday's appointment goes well for you.  Please keep us updated.

Good luck w/ all of this....really.  Love, Tina

 

Posted 5/5/2011 8:02 AM (GMT 0)

Screaming Eagle said...
Hello Niki!

I took the evening off to spend some time with my wife, and was headed to bed, when I thought I would take one last pass and take a peek at the forum here.

As I read through your post, I thought "Lord have mercy" you have certainly had, and are currently having your share of serious problems...and one after another as well! I see that you are a young mother with a 16mo old son, and that in itself, along with all of you're medical problems, and then school on top of it all....would be enough give the emotions the old "one, two punch".

I cannot tell how badly we all feel for you, but trust me it tears us up to read of problems like this, and the first thing we want, and will do for you is to rally around you. By now you have come to realize that we are family here, and family is important to us.

As I read your plea for a good suggestion or two, for Fridays appointment, it struck me that if it were me, I think I would read this post to your Dr. Ask him for 3 minuets of his time, and then let her rip! You are scared and you have every right to be, especially since several Dr's have thrown up their hands in puzzlement, and no diagnoses has been offered to you. I do see time after time, patients worrying about what a Dr may, or may not do for them, but in the end, the worrying will absolutely not make things better. Your feelings are quite normal though and I, nor anyone else, blame you for it.

As was stated before, be honest, ....... open up and share everything with this Dr. Take notes with you, so that you will not forget what you wanted to visit, and ask him about. By all means, DO!... take a family member with you too! Someone who knows you well, and understands what you have been going through.

I wanted to ask you, who has been scripting your pain med's? Is it possible to ask them for more med's when you run out? I'm more than a little concerned about all of your symptoms, but am at a loss as to what may be causing them. I'm not sure you're going to get all of you're questions answered tomorrow, so again you may be forced to be patient a while longer, especially if testing needs to be done. Just be prepared for it, if they indeed need more test done.

I wish you the very best of luck and well wishes, backed up with Prayers for you!

Take care, and as always, we would like for you to keep us updated.

Good night, and I hope you can get some rest tonight.

In all sincerity!

SE wink



Dear Screaming Eagle and Everyone!!! I cannot believe all the rally of support I feel at this moment reading each one of your posts and all the love and compassion of a real family around me! Wow--it is more "medicine" for me than any dose of steroids or pain meds!!! Thank you all so much! I am going to print this thread off in the morning as you all suggested and then also sit down and try to write up concisely each major medical occurrence I have been through so that I have something to just give the doctor to have.

Maybe that will help him too to make sense of it all. My family doctor was giving me tramadol for pain but took me off it last Friday when things got real bad (had a seizure thursday night) saying it lowered my threshold for the seizure, so he never offered anything in its place and was in the ER by Saturday night 1:00 am in ambulance--really bad pain. The ER doctor is the one who gave me 15 pills called Lortab which have helped tremendously when the pain gets worse, but the increase in Prednisone dose to 40 mg I think is what is helping the most.


I really am not sure though at this point if I could completely be ok without the pain medicine though as I have had to use it daily since I got it, although mostly towards evening and at night when the pain seems to get worse for some reason (maybe because I take the Prednisone first thing in the morning?). I don't feel like my family doctor cares or is willing to treat my pain and got real mad one day that I had used 2 pharmacies (the local one right by my house is closed 1/2 the time so we turn to a retail chain in between times and my husband does it) and then started grilling me on why I had used the two different places! I told him I don't even fill the medicines--my husband does it and goes whereever they are open at the time! I could not understand why he made such a big deal about it but was acting like I had done something wrong! So although it is much less convenient,


I moved all the prescriptions to the chain store which is further away just so I have access to the pharmacy at all hours if needed (such as if I've been to the ER on a weekend when the other pharmacy is closed!) But the whole thing made me feel like he was accusing me of doing something wrong and that he thinks I am just trying to get pain medicines from him (which he has been my doctor for around a year and a half now and I never have bothered him for help with pain until this "episode" this year got real bad... and the tramadol was really not working at the dose he gave me but the surgeon who did surgery on me earlier in the year had me at 2 pills every six hours and that had worked, but he took over that and gave me just 3 pills a day. It is just not enough right now without the steroids, and even with the steroids now I am not sure it would work even if I was allowed to continue it.

I was only getting real relief from it on 2 at a time more often. But I really think the steroids or a similar medicine are the real key to recovery for me because they actually relieve all the problems I have at once--not just the pain. It is not an "immediate" fix or anything--but within several hours the symptoms gradually subside and get better at higher doses.

Anyways... I have gone on and on now about all this and know you have plenty more to deal with in life than my medicines and doses, but I hope that gives you a picture of it all. I think I need to take your advice from the other thread and see a doctor that manages the pain for me. I think they will maybe help me figure out a way to specifically deal with that instead of it being the last thing ever addressed when I talk to the doctor and actually one of the most major issues I am having at home.

Thank you again all!!! I really feel like I have a family out there and can imagine you all marching in with me to the doctor's office in spirit and helping me have the right words to say!!! That gives me so much courage!!! I send all my love out to each of you and also lots of hugs--the big bear hug kind! yeah Nicki





(I took the liberty of splitting up you're paragraphs, for ease of reading. Please take note, and try to practice this in

 future post)  (Also, there is no need to copy a reply, and repost it here in the same page, as it uses up resources)

These are just friendly reminders!

Thanks! SE wink

 

 

 

Post Edited By Moderator (Screaming Eagle) : 5/5/2011 6:24:22 AM (GMT-6)

Posted 5/5/2011 5:58 PM (GMT 0)
Nikki I see a rheumatologist and on my first visit I did not get a dx. He had some ideas but did not want to put anything in concrete until he had all of his lab tests done. Let me tell you, they do believe in running lab test too, lol. The lady that took my blood on my first visit said she knew I was a new patient because of all the different orders he had checked.

Be sure your PCP has faxed over your records especially xray reports and all labs done. I would call their office today and make sure this has been done. I have gone to too many appts and get there and the PCP's office had not faxed one sheet of paper.

Just be honest with this dr and be sure he has as much info on you that you can get. The others have given you some good ideas on making lists and this sort of thing.

Lets us know how the appt goes. Take care.
Posted 5/5/2011 6:33 PM (GMT 0)
Thank you so much Straydog! I will call them now to make sure they do have all that stuff. Also, the endocrinologist wants to talk to them about the adrenal thing to make sure they keep me on that level of steroids till they check it out first (i have had them shut down on me twice already in the past so I think that is why she is so concerned). If they have not sent them, I will get onto my GP immediately to ensure they are there or I pick them up in time. I am having a pretty good lower-pain day today and a little more energy!!!! Yeah!!! Thank you all for all the support! I really feel like I have a new family and could just hug you all!!! Nicki
Posted 5/5/2011 6:33 PM (GMT 0)
NikiS

 

Have you ever thought about going to some place like the Mayo or Cleveland Clinic? Mayo Clinic has a clinic in Jacksonville Florida, maybe that might be some place you might want to think about going to??? Or any major university that has a good medical school. You might get better results, You have had so much already for your  young age, and serious stuff at that,  and adrenal gland failure is nothing to play around with! So maybe you should seriously consider going to one of these places! As for your appoiintment, you have been given all the advice that I could ever think of. Just make sure the Doctor know what all this is doing to you! that is so important! Niki I will continue to keep you in my thoughts and prayers.

 

Peace be with you!

 

White Beard

Posted 5/5/2011 8:07 PM (GMT 0)
Thank you White Beard! You are an amazing support to me!!! I cannot thank you enough. I think you have a lot of wisdom in suggesting the Mayo Clinic and other. I will see how this goes tomorrow and if it does not look like things are going to improve from the visit, then I am sure my husband would take me where ever we need to go at this point. I think it really hurts him to see me in this much pain and discomfort. I am very blessed to have you all as my new family and to have such a loving and supportive husband that has really cared and been there for me. It is not something to take for granted at all.

I am actually working on a patient self-report for the doctor right now. I found a template in Word for the medical history and using that to fill it all out--past diseases/surgeries, current medical issues, medications, doctors, hospitals, etc... so he has a complete "story" from me as far as everything I can remember and also everything I know about my family's history too... It has been taking me some time today to do, but well worth it if it makes it easier for him to see "at a glance" the key issues I have had, when and where and how...

You all have given me the most incredible and helpful advice and I am listening to every word you offer so I can get this resolved soon! Lots of big bear hugs!!! Nicki
Posted 5/6/2011 2:56 AM (GMT 0)
Hi Everyone! I wanted to let you know that I managed to finish typing up a Family Medical History of everything today and used a template from MS Word for it that really helped listing out all issues, hospitalizations, medications, family history, etc.. etc.. And I think it really will help the doctor to see it all bulleted out neatly and chronologically so he knows what I have been dealing with and for how long and to what extent. I am very grateful for your suggestions and help with all these things. I can't say that I am not extremely anxious tonight and may not sleep to well for that... I am officially out of my 40 mg Prednisone dose as of this morning and don't see him till 1:40 tomorrow.... and what if he does not give me the time to talk or explain enough? That has been my traditional experience with most doctors--they don't give you even 5 minutes to talk! How does one explain almost 2 years of issues in that time?! Then I only have a few of the pain pills left too (I got 15 last Saturday night from the ER)... so also what if he does nothing about that and tomorrow is Friday before the weekend?! I am scared I will end up in the ER again and they probably will get sick of seeing me there and not help... So I am just really hoping that this doctor will hear me out and really understand all that I have gone through! So many symptoms are disappearing now after the high dose of steroids--the swelling is way down today, the bruising down, the sores on my head closing up, etc... so will he also "see" enough of what I have or believe what I tell him? I am going to take my laptop with pictures just in case of the other day--but I also have not managed to document all the issues by picture at times when I was just too sick to deal with that extra step....

Thank you again for all your kind and family support! I really feel like I have angels out there who are caring for me!!! Nicki
Posted 5/6/2011 7:16 PM (GMT 0)
waiting for you to get back. Thinking of you while you are gone.
Posted 5/7/2011 12:25 AM (GMT 0)
Thank you EVERYONE!!! yeah

I had a very good visit today with the doctor on everything except the "pain issue"... He was extremely kind, sympathetic seeming, very listening and took his time with me to go over everything I had to say, took my patient report I had made for him to read later, and examined my various limbs and joints. He ordered a slew of bloodwork as well to check for everything from Lymes Disease, to Rocky Mountain Spotted Fever, to Lupus, to RA, etc... etc... He feels that my endocrinologist is right: that I am in adrenal failure. That is why I am getting such extreme relief from the steroids but only at such high and consistent doses! He put me back on the prednisone but lowered the dose to 20 mg, but this time instead of taking it just once a day, we are going to split it into 2 doses every 12 hours: 1 in am, 1 in pm for 10 mg apiece. This is because he explained that prednisone only lasts for 12 hours and that is why it was not lasting me through the evenings and nights the way I was taking it before!

He said if my adrenal glands shut down, then my body is not making cortisone, so the only relief I would get is from steroids to replace what my body isn't making. So although he could not give me a diagnosis or concrete answer, I feel that he is really looking hard at every possibility and working quickly to help me find resolution.

The pain issue though was a disappointment quite frankly. I told him I was wondering what I could take for it: I can't have NSAIDS because of my interstitial cystitis and being on steroids (also anti-inflammatory), I can't have tramadol because of the seizure problem, I really shouldn't have anything with tylenol in it because my liver is enlarged (which knocks out things like lortab or percocet that have tylenol in them), I can't have aspirin due to the IC, and can't have darvocet because the pulled it off the market! So my question was what can I take and will you be willing to prescribe whatever I can take? He said he had to talk to my family doctor first.... ?! and I told him I have only 1 pill left at this time from the ER visit last Saturday night to get me through the whole weekend with a lower dose of prednisone than I've been on and no way of knowing how much pain I'll be in (and already am at the moment!!!) But he did not give me anything and I don't think he ever called either! But at least I have month of the prednisone to take without worrying about running out of that every 4 or 5 days as I have over the past couple weeks!!!!

Well, I am exhausted and going to lay down for a few minutes before I get back up to work on homework, but knew you all would want to know how the day went! Thank you so much for all you support and care! Nicki
Posted 5/7/2011 3:14 AM (GMT 0)
I'm so glad that he really really looked for answers for you. How are you now? Have you gone elsewhere for pain relief tonight? The more I read ( published and forum) the more I agree that rheumy docs don't manage pain well at all.Look for a pain management clinic if you can. Bring all that you have there and let the rheumy do what he does well, and have someone else manage what he doesn't seem to want to touch.
If you need to, look for the ER doc again. What i would do is this- Bring with you documents from ER visit that gave you meds, documents from dr visit today, nd see if they can fet you through to Tuesday. On Monday start calling the rheumy, and your pcp, and find a pm doc. I'm not sure if that would be the right thing to do, or if I would have the guts to do it myself, but from this end of the post that's what I can think of.
Posted 5/7/2011 4:23 AM (GMT 0)
Thank you Christina! I agree with you -- let the rheumy do what he does best and get a pain management doctor to do what they do best--manage the pain! I am hoping once we get a good regime of steroids going for a longer period of time that maybe the pain will also go away on its own so hopefully this wouldn't be a long-term issue, but after months of this escalating pain, I just am not too keen to go on like this anymore! I think it is just time to do something about it until the pain does subside! I really appreciate your advise! I am happy that at least he is going to do something as far as finding a diagnosis for me--that is most important obviously in order to really treat the issue! Nicki
Posted 5/7/2011 6:14 AM (GMT 0)
Niki

It sounds like your appointment with the rheumatoidologist went well and I am super glad he done all that blood work on you! Maybe just maybe they will find out what is going on and what is wrong with you. You know if your adrenal gland are failing, I would check back with your endocrinologist and at least tell him the changes that your rheumotoidologist made in your steroid dosage. As your endocrinologist is much more qualified on dosing you for that. If you are in adrenal gland failure it is really, really important that this be treated properly. I wish they would have addressed your pain issues, but unfortunately allot of Doctors just do not take a patients pain seriously! I hope this all works out well for you, I think if they do not come up with something pretty soon I would be looking at going to Mayo's or some where that might be better at trying to get you a diagnosis and the proper treatment!

We are here for you! I keep you in my prayers!

White Beard
Posted 5/8/2011 1:24 PM (GMT 0)
Hiya NikiS

Just wanted to pop in and pass on some more ((((((hugs)))))) lovie. I was thinking of you when I went for injections on Friday. I am glad that the Dr is looking into things for you, I will keep my fingers crossed for you that you find out what it is and they can sort it out for you. Pain wise I am so sorry lovie that they did not address this for you, maybe try and see someone who can help you pain wise. I know it means finding yet another Dr to help, but some are more specialised in these areas than others. I will keep checking in lovie to see how you are and if you have had any results back. I hope you are having a lower pain day today and I am thinking of you lovie ((((((hugs))))))
Posted 5/9/2011 5:53 PM (GMT 0)
Keep us posted on the bloodwork, will be thinking of you
Prayers and many healing hugz
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