Fibromyalgia Support Group

Sorry I have been MIA from here for a while. I have been trying to get into a Rheumatologist for almost 2 years, but between many practices in my area closing, several no longer taking new patients, and issues with my former GP sending the wrong information, getting into the doctor has seemed impossible. Thankfully since I switched to a different family practice last year and have been seeing a VERY good nurse practitioner I have an appointment with one of the best practices in my state in two weeks. She worked very hard to get me in and I only had a two month wait from the time I got the news until the appt itself.

To be honest my current doctor, NP, and pain management doc are thinking I have some sort of auto-immune disease and not Fibromyalgia after all, but since I have been posting here and have met so many wonderful ppl (and because I have no other diagnoses as of yet) I wanted to share the news that I FINALLY had an appointment!

Now I am just praying that I can get through the next few weeks of going back to work full time (I am a special education teaching assistant) without being on my steriods and NSAIDs. I was told to stop taking these a month ago so the doctor can see me at my worst and because some of the medications could cause issues with blood work. I have been in alot of pain and all my symptoms have gotten worse (including rashes on my face, neck and trunk and getting very sick if I am in the sun), but my doctor and I see that as a sign that the steriods have been working and I now have more involved symptom information to give the doctor as well.

Thanks everyone!

Hi RAS,

I remember seeing you here awhile ago ~~~ Welcome back !!!

I am glad to hear that you finally have a Rheumy appt. and hope that he/she can do everything possible to diagnose your symptoms and begin proper treatment.

Please let us know how you make out ~~~

When is your appt. ?

Marilyn

Hi Marilyn, I remember you too!

I go to the Reumy on September 19th.

Thanks for the well wishes, I am keeping my fingers crossed for sure!

Post edited by: RAS, at: 08/30/2010 12:03 PM

I hope the appointment goes well!! I'm sorry you're struggling!

Let us know how it goes!

Gentle hugs!

Welcome back and I will hope for the best for you. Please let us know how it goes although you may not have answers the day of your appt., at least you're heading in the right direction. Good to see you posting again

Hi RAS,

Welcome back! So happy to hear that you are finally going to see a rheumy. You have a lot of symptoms that I do and am curious what your doctor diagnoses you with. Steriods help a lot of health issues, so it could be several different thing.

Glad you are back and plese keep us posted as to how you are feeling and how it goes back at work. I also was an aide in a special ed room, so I understand how challenging (yet rewarding) while working. I hope it doesn't become too much for you without your steriods. I am 58 years old and became disabled about 4 or so years ago (fibro fog). I just became too much for me. I kept thinking I could do it because of all the holiday breaks, summer off, but eventually I was put on chemo therapy two years in a row and that was the straw that broke the camels back.

I wish you luck and look forward to getting to know you better. Feel free to PM me anytime.

Welcome Back Hugs~

Christine

Welcome back, hope all has gone well, do let us know

Hugs

Paula

I'm glad you are finally getting to see a rheumy, I can't believe your drs couldn't just do labs, mine did them on my first visit then so did every other dr I saw because they all want their own anyway lol but hey what's done is done. At least now you are getting somewhere. Even if you were to be given another dx it doesn't mean you don't have Fibro, I'm the poster child for that. I've tried to ditch this dx with every new one they've thrown at me but they insist I have a severe case and it has nothing to do with each new dx I'm given it's actually known to be related/linked to a couple. A rash on your face, neck and trunk sounds odd. Could it be med related? Steroids have been being given to Fibro patients for some time now when at one point they were for specific uses and they do make you feel great but unless taken daily they are only a temp fix and you just feel worse after because the greatness wears off in my eyes. I'm supposed to be on them but hate them so don't do it. I guess you will find out soon enough. I wish you the best. Good luck! Hugs

Miss stacey: the rash started as soon as the weather warmed up a bit here in WNY (the sun is making it worse too, even with sunscreen on!). Almost as soon as I stopped my predinisone, the rash on my neck and chin spread and is behind my ears and on my trunk as well. Also getting a lovely red rash on cheeks, again, worse w/o prednisone and in the sun. So if it is med related, I think it is b/c I had to stop the steriods. And you are right; they have helped alot, but only when I take them daily and the side affects of weight gain and facial hair have not been pleasant OH, several docs HAVE done labs, they just have been fine, or inconclusive. My current doc has mentioned it could be mild lupus, but she doesn't feel comfortable giving me that DX as yet. My white blood count has been low for over a year, ANA and SED rates have been "slightly elavated", joints are getting worse (UGH!) having sore throats and low grade temps on a regular basis, along with skin issues, purple hands when I am stressed or cold, fatigue was almost unbearable (but I am on Adderall for now to keep me able to drive, work, etc)frequent headaches, and so on. She has been good about testing me several times this past year for kidney, heart and lung issues as well, thankfully all has been normal on these tests. But these symptoms could ALL be something else too...so frustrating! The usual fibro meds have done nothing for me: have had no positive results with Lyrica, Neurontin, Cymbalta and Savella.

For some others who commented: I know this will still be a long process and I probably won't walk out with a clear diagnoses the first visit, but no one else seems to know what to make of my symptoms or what to do with me. Current doc is the best I have seen and insist that Rheumy is the best for me now and I agree.

Thanks for sharing your experiences!

Post edited by: RAS, at: 09/01/2010 06:53 PM

Post edited by: RAS, at: 09/01/2010 07:05 PM

Christine: thanks so much for sharing that you were a TA! I love my job, but do admit it is hard. This year I am moving from a 12:1:4 class for severely disabled students where I worked 1:1 with an autistic teenager for the past 2 years, into a 12:1:1 class for students with learning disabilties and mild/moderate behavioral issues where I will be the class assistant. The move was based on need (our school can once again hire aids for 1:1 positions and gave me that position since I am TA certified) and b/c the severe disablities class really needed staff that can lift, run, and walk ALOT! I will miss that class terribly, but am excited about the change. I think it will be positive on many levels and I will be able to be much more comfortable throughout the day and thus better do my job. Plus the teacher has some mild chronic health issues and she and I understand each other well in those areas.