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· Registered
11 Posts
Discussion Starter · #1 ·
Hi everyone...

I was very happy to find this site! I have been posting at a few others but love the fact that this site has a "not yet diagnosed" topic. I have been lurking for awhile now and have been wanting to write...but have been too tired to do so. My story is long.....well..maybe it's not long...but I'm

I am 31 years old, married and the mother of a wonderful soon to be 18 month old...(he's our whole world:bigsmile:). I work as a RN in telephone triage.

I don't even know where to start really. My problems started shortly after the birth of my little guy. I started having increasing muscle aches, fatigue and just a generalized 'sick' feeling. I brushed it off at the time...because...face it....who isn't tired and a bit achey from taking care of a newborn. Even before my pregnancy...I had frequent fatigue and very minor muscle aching/pain. I never thought much of it and pretty much linked it to my history of endometriosis. Endometriosis was my main and only medical problem until this other stuff cropped up. I have been thru numerous surgeries and numerous meds including lupron.....but the endo just keeps coming back.

Ok..back to the story. My son was born in Oct of 07'.....I just kept on going and tried to ignore my fatigue, pain,etc. Fast forward to last endo came back(imagine that) and I had yet another surgery. I noticed that I didn't bounce back from the surgery very well...had chills, body aches, and low grade fever....was checked for infection of some sort and everything came back fine. fast forward to last fall. The muscle pain just kept getting worse, then came the joint pain....OUCH! It affected and (still affects) mainly my knees and elbows.....lesser degree of pain to my fingers, ankles and feet. Around that time, I also started getting night sweats and constant low grade fevers.

Thought it was all getting pretty made an appt with my regular doc. Right around that time...I developed a red rash to both palms. My doc was quite concerned for right away set me up with a rheumy.....had over a three month wait to get into him......

Finally got into rheumy in Jan of this year. Bloodwork all came back negative except a slightly elevated C3 level...(which he never even bothered to tell me about). Diagnosis: fibromyalgia. He put me on Flexeril for bedtime and Piroxicam for day use. (Mind you ..up til this point...I had been using at least one Vicodin a day d/t the pain). He said that night sweats and fever don't generally go along with fibro so told me to go back to my reg doc because "maybe it's your hormones or something"...grrrr.

Gave the meds a whirl.....Flexeril did help with some of the muscle pain and "twitching' that I would get at night....Piroxicam didn't do anything for the pain...and wasn't covered by my my reg. doc switched me to Diclofenac.....did that for a month.....didn't help a bit.

So...ended up calling rheumy a few weeks ago and told his nurse about some new sx I had developed......frequent blood blisters in my mouth and weird red/blotchy rashes that just suddenly appear..mostly on my arms and chest. Asked her to ask him about further tests or repeating the ANA,etc. She called me back and said "he still thinks its fibro and wants you to try Daypro". Sooo...OK...the first and second NSaid's didn't work...lets try yet another one...grrrr. I was more upset that he didn't listen to any of my concerns.

So...called my regular doc the other day and we both agreed I should seek a second opinion. I have heard a lot of great things about the other rheumy in our network..I wanted to go to her originally...but she's much harder to get into...(tells you something right there)...I was so desperate for help at the time...I was willing to see anyone. I sit....still taking Vicodin and not feeling any better. Joint pain is unbearable at times...(like someone is stabbing me), muscle aches, low grade fevers, chills, weird palm rash, weird red, blotchy rash that comes and goes quickly, frequent headaches, extreme fatigue, mouth sores,etc. All sx seem to really flare up the week before and week of my period.

Oh Boy!!! This has gotten to be quite the message...sorry:eek:. Bottom line...I guess I'm just looking for new friends, support, and wisdom from those that have been fighting the fight. Anything in my post giving a tip off to lupus or something similar? Hope everyone is well..and I really look forward to meeting everyone!


· Moderator
4,458 Posts
Hiya, welcome and well done for persuing your need for a more thorough check up and maybe reassessment for diagnosis. I think it is a very good idea to go for a second opinion. It can take a long time for the Lupus diagnosis, as it can for other conditions too. I would think it definitely worth them keeping an eye on your auto immune antibodies and your general blood health. There is a list of criteria for Lupus which you have probably already found on this site, there is an alternative list also as some people don't sit comfortably in one 'slot' !:) Whatever is causing you these problems (may not be Lupus) it needs to be dealt with, I wonder if he checked the sites on your body that relate to a fibromyalgia diagnosis? Also if it is anything else it needs to be treated as you don't seem to be getting much relief from your current meds... the sooner the better with most diseases. Start keeping a 'symptom journal' ready for your Consultation so that you get the best out of the appointment. Be very honest and don't underestimate your pain to them, you may look ok and they will think you are, unless you really tell them you are not! Im from nursing stock and was good at that!!! :lol: Get that appointment, prepare for it with photos, journal, etc etc and let us know how you get on..all the best, and be quite sure you need an answer to all this.
Claire X

· Registered
1,137 Posts
I just want to second what has been posted by Claire.

Also..Don't let them tell you it is Fibro. You may have Fibro, but with a rash and mouth is could be more.

I was told the very same. It delayed my diagnosis by years..and, I worsened without the much needed meds. I have damage to my whole system (organs) as well...because of delayed diagnosis.

I was disadvantaged in the fact my m.d. told me I was only depressed. Yes, they may try and attack your mental status, rather than give you a proper diagnosis. Take pics of your rashes and take them with you to your dr..also.

They think we are malingering..especially if we don't have a text book case of lupus or bloodwork is not positive.

Best Wishes..

· Registered
1,999 Posts
Keeping a symptom journal is a superb idea. Take it with you to the doctor. If you have one, one of the mini recorders is also handy so you don't miss anything.
If I have a lot of things to cover, I take "love notes" to my doctors. That way we cover everything. My doctors like them as well so they know what has been happening. [I even do this with my vet for the animals and she loves it too! She checks off each line as we go thru it and keeps them in their charts.]

Take care of yourself, and rest as much as possible.

· Registered
6,939 Posts
Hello there and welcome :)

Your symptoms certainly merit investigation. It sounds as if you have a great GP backing you up which is always a very good thing.

A second opinion is definitely in order. Sometimes, even though you know something is very wrong, a clear diagnosis can be very difficult when bloods are not clear. A rheumatologist who is experienced in auto-immune diseases can be invaluable.

I hope your appointment goes well, keep us posted,

· Premium Member
7,568 Posts
Welcome to the site, the others have given you great advice. You definitely need a second opinion. You know something is wrong and you know your own body. Do take photos and keep a record of symptoms it does help.

I hope that you can get that appt with the other rheumy soon. Let us know how you get on.

Take care


· Registered
2,444 Posts
We have a lot in common - endo was my main problem for years too. Took over 15 years from my first complaint about that pain to get a diagnosis and treatment though. I also had a few surgeries and took Lupron... lupron is associated with a lupus like illness especially if symptoms occur soon following starting that therapy. No proof it actually causes lupus though...

I think a second opinion with a highly recommended doctor is a great idea. I don't know how thorough the first rheumy was... if possible I would recommend getting physical copies of the blood test results, as well as the physician notes. Sometimes you can find some surprising things there that you were unaware of!

I will assume that you live in Wisconsin, and if so be sure that your next doctor tests you for Lyme disease. Lyme and lupus have a lot of symptoms in common and about 1/2 of confirmed Lyme patients will never remember having the typical bullseye rash. Ideally, they should run a Western Blot test and NOT just do the screening test. Go see a Lyme specialist if you have to. I say this because Lyme is cure-able most of the time...

Good luck and definitely keep pressing on. Let us know how things go and if we can be of any more assistance.

· Pollianna
485 Posts
Hiya wisconsingal, so glad you have a good doctor. I too got the Fibro label and that made sure I didn't get diagnosed for about 10yrs :( Everyone here is wonderful and supportive. it makes not a jot that you haven't been "diagnosed" with anyhting because most of us went for a decade or more witht the same struggle. Stick around :wink2:

Baby sounds wonderful *sigh* all broody now :bigsmile:

P xx

· Registered
4,968 Posts
Hi there and welcome to the board.

I am glad you found us here. You sure sound like you have been dealing with a lot on top of taking care of a baby. By the way, congratulations on your baby boy.

I also dealt with endometriosis for years, was on the Lupron which stopped menstration and put me into a medically induced menopause, not fun. I had many surgeries that led to a total hysterectomy at the young age of 36. I have one son, thank god. They said I would never have kids and yet once I had him they said I would never deal with Endo again.......WRONG!!!!!

I cant help but to wonder if lupron could have caused anything auto immune to go into overdrive. One may never know. I sure am glad that you found this place as you will find support and knowledge from everyone here.

Hope to get to know you better and good luck moving forward. Sounds like your doctor is on the ball and hopefully you will get some answers soon. Don't stop until you do as you know your body better then any MD.

Join us in the chat room sometime. And, Hugs to you also.:wink2:
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