Hello all, I've been a reader of HealthBoards for some time now.. December of 2008 brought me a Dx of Fibromyalgia. After 5+ years of symptoms and doctors telling me it was all in my head. I went through trying Lyrica (no change), Cymbalta (decent improvement but also wicked hot flashes - so stopped) and now am on Savella (50mg, 2x daily). It did seem to help a bit at first, but I don't seem to be getting the same effect.
My (new) GP that I've had since May 2008 has been absolutely wonderful, he's the first one that actually listens to me and assures me that he doesn't think I'm a crazy hypochondriac! I've been having worse joint pain lately.. (lower back, hips, knees, ankles, wrists and shoulders) and the fatigue lately.. oh my gosh!! I sleep as much as I can, and usually the first thing on my mind when I wake up is when I can lay back down!! This past May (2009) I suddenly developed idiopathic hypertension.. currently on a beta blocker for that... Read somewhere that sudden onset HTN can be due to lupus as well. Also have SOB, no asthma though... ??
Since Spring of 2005, I've been having this horrible episodic rashes.. they would wax and wane and mostly never truly go away... Went to 3 dermatologists and an allergist. Determined I'm NOT allergic to anything, though I do have chronic rhinitis & chronic sinusitis. The rashes were explained away as contact dermatitis and eczema.
**Edited to add, i had an "eczema flare-up" just recently and my GP gave me a dose pack of methylprednisolone to calm it... by day 3 I was feeling better overall - less fatigue, etc. and the rash had surely calmed down. This indicates to me that there is *definitely* something auto-immune going on. We've done this before over the past year or two and each time, I improve while on the steroids and then within a week or two of being done, I rebound back and start feeling worse quickly!
Recently, I've been noticing what I think is the malar rash on my nose & cheeks.
Throughout all of this, the only blood results that have come back odd is my C-reactive protein (always elevated) supposedly indicating some sort of widespread inflammation (odd for someone with no allergies, right?? LOL)... and a Dx of FMS (which is supposedly not inflammatory in nature).
So, Since I've been experiencing the extreme fatigue and joint pains, etc recently, and the still elevated CRP, and the possible malar rash, my GP is finally sending me to a rheumatologist, Thank God! I'm waiting on an appointment with one from the University of Michigan Hospital in Ann Arbor, MI... hoping that being at a teaching hospital will give us potentially better / faster results.
I sort of had a little meltdown trying to call and make the appointment with the rheumy... my husband couldn't understand what was wrong with me. I told him I was feeling undeserving again, afraid that they were going to think I was wasting their time.. I still can't help but think maybe it IS all in my head!! He reminded me that my GP wouldn't be sending me for a consult if he didn't think it was necessary... and I know he's right, but it's so hard trying to get him to understand sometimes.
I'm excited to finally be going, hoping for answers and dreading being told yet again that all my tests are "normal".... it's such a vicious cycle!
Sorry for the length, and thanks for reading.
Last edited by Serenity81; 10-08-2009 at 08:25 AM.
I am very new to this forum but thought I would respond anyway I am so sorry to hear about everything you are going through. I know exactly how you feel! You start to think that it really is in your head (IT ISN'T!). You tell the docs about everything that hurts and they look at you like you're crazy. Thankfully you are going to a rheumatologist! My 2nd rheumy was so incredibly understanding, so I hope you are just as lucky with yours. If this one dismisses you, move on to another one. I'm so glad I did. Keep posting on this board....this "family" is wonderful! Everyone made me feel so much better and they are very knowledgeable.
Good luck and let us know how you make out.
Sending best wishes your way! Be sure to get a rheumy that specializes in SLE (and get a DNA test). I was diagnosed 20 years ago, so I speak from experience. Lupus is a very complex disease that affects the entire body and even the specialists don't know everything. So try not to fret (this disease 'feeds off' stress), the right doctor will have you feeling better in no time!
Thanks for the welcomes and advice =) It's so very frustrating to go through this for so long and have so many doctors and other people thinking you're just making it up..... I'm eager to get my appointment and get it done with, and hopefully have some answers to show for it!
Welcome Serenity. I'm glad you are going to a medical center. Lupus is a team sport so it's good to go where there are numerous medical experts. When is your appointment? Take a copy of your medical records with you and a list of questions. Hope all goes well.
Serenity, I'm writing to say "Welcome!" I know what you mean about trying to talk yourself out of believing something's wrong. I saw so many drs. who didn't find anything wrong---except stress-induced IBS, stress-induced urinary problems, and more in same vein. We internalize THEIR thinking, or something like that. I'm glad you're booking that appt!
And try not to dwell on your old tests looking "normal". The joke on me was that most of mine were normal, but my drs. hadn't called for the "right tests". When done, the more appropriate tests were NOT normal... Let us know how it goes, OK? Sending my best wishes to you, Vee
Serenity, I want to add a welcome and suggest you read the sticky posts at the top of this thread. There is one post with a link that gives wonderful info on the coexistence incidence of FMS and Lupus. I know I went through 2 Rheumatologists who did absolutely nothing to help me before I found one who actually specialized in FMS and it was his testing and persistence that found my lupus. I am one of the lucky ones with both lupus and FMS (there are several on the boards) Anyway, I wanted to acknowledge that not all of the tests came back positive on me, but there was enough to establish the lupus diagnosis. I was started on lupus meds (Plaquenil and Zanaflex) and the FMS is better!!! I still have fatigue and aches and pains and sometimes feel lousy but overall my health is more manageable. I do hope you will read the above sticky posts as they will enlighten you to possible treatments and how to survive with the dual diagnosis. It is hard to pinpoint either illness as some of the symptoms do overlap, but even though I had my FMS label, I KNEW there was something systemic going on. I think you are having the same thoughts. I do understand how frustrating it is to be in your shoes, but do not give up until you get the satisfaction of having all your answers. It can happen.
I look forward to hearing how it goes. You probably won't get a definitive dx tomorrow. Dr. will probably take a thorough medical history, do a physical exam, maybe chest xray and take lots of blood. Make sure you ask lots of questions.....what blood tests mean, his/her philosophy about treating lupus, affiliations with other specialists. Good luck.
I will be looking forward to hearing how your appt. went.....just remember that lab work is only part of the story!!! A good physical exam, a verbal list of your history/symptoms are an important part of the picture. Please remember that lab work is only as good as the lab doing them, so have it done with their lab and not a local lab! It happened to me. And lab work can be negative for some things and positive another time (it can wax and wane), but the symptom list/exam may give still cause the docs to lean heavily toward a suspected diagnosis. Regardless, I hope they give you a tentative diagnosis and start some Rx. For me it was plaquenil and later Vit. D. It can take months for the plaquenil to have effect but when it did I realized how lousey I had been feeling for so long
Yes, please let us hear how your visit went. I was pleased that my Rheumatologist did his own labwork and xrays. It was such a relief to me to know that I was not imagining my symptoms. He was very attentive and I think he was as frustrated as I was that I had suffered for so long with no improvement before it was suggested I see someone else. I speak from experience that it is not all in your head. I truly believe that one is in tune with their body and you instinctively know when something is "not right." Don't give up until you have your answers.
So.. tentatively just based on the information my doctor sent to him and our discussion about my history / symptoms, he thinks it's SLE. They took a ridiculous amount of blood... (seriously, like 25 vials - but this was only because I agreed to join one of their research studies that was simply a blood study, which needed 10)... He ordered a bunch of tests and thankfully they're doing it in-house. He mentioned that these huge national labs do the ANA testing in such a way that isn't as good...(?) There's apparently a different way of doing it that is more definitive and trustworthy.
He also took me off of the Savella due to the fact that he doesn't really think I truly have Fibromyalgia and I'm not getting much if any relief from it anyhow.
Instead, he's starting me on Plaquenil (200mg twice a day).
It's alot to take in... even though I've had a gut feeling that this was the case, I think deep down I was still expecting to have them tell me it was something else really obvious or again.. "all in my head."
The hubby's had a rough day trying to digest it, too.. Right now, we're just trying to be open and not clam up or shut down.
*sigh* As relieved as I am that I'm finally heading towards a light at the end of the tunnel, it's all awfully surreal.
Serenity, I'm sorry you got the Dx but glad you did---you know how I mean that! Meaning, appropriate meds, finally! I can honestly say I've had the most consistent decade of my life since starting Plaquenil, so here's hoping it will tame your various problems as effectively. Keep in touch, OK? Best wishes, Vee
Vee - Yes, I totally know what you mean! It's disheartening.. but such a relief to be getting some answers and be taken seriously!!
He did make sure to remind me that it can take awhile to start feeling better on the Plaquenil, so I think I'm prepared for that, probably will have to remind myself at times, but that's to be expected.
Barring anything way out of the ordinary, I go back in March to follow up. He's really thorough and I was very pleased. He's a second year rheumy resident and his attending is very nice as well. I was expecting to feel really rushed and sort of like just another number because it's such a large university teaching hospital, but it was actually very much the opposite!! They really sat down and talked to me and listened, it was so refreshing.
He's also digging deeper into a few of the rarer possibilities, some metabolic conditions and whatnot. Also, looking much more closely at my immune system function to try and gather clues there, too.
Despite the fact that it's just the "beginning" of the search for them... he said that they can make the Dx even with just my history & symptoms and no supporting lab work as I guess it can take some time for things to show up?? I never even knew that was possible!
I'm hopeful.. and well, it's been sometime since I could say that!