Hi All, New to Group

General
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Hi All,

I'm new to the group, was just dx a few days ago, at this point only a mild case. Was dx with fibromyalgia for about 15 yrs but last year had a positive ANA, went to see a rheumatologist who saw me for a whole 8 mins, heard "fibromyalgia" and said the positive ANA was a false negative and never reordered the test. Never went back to him. I went to a new doctor this year and requested he repeat the ANA and it again came back positive. He asked how I felt and I down played my symptoms because of so many years of no one listening to me. So he stated that it was a mild case of lupus. He did not order any other test and did not order any other meds which I am ok with because I can live this way, daily pain level is a constant 3/4, pain main in joints, dull. A few weeks back I had bad pain in my chest upon breathing in on and off for a week or so but it didn't stick around, my hands bother me on and off, usually in the morning but as the day passes they get better.

Oh and worst than any of the other symptoms is the fatigue, it interferes in my everyday life, hard to make plans because I can't commit to anything. I only work two days a week because that is all I can handle. And that kicks my A$$.

So why am I here???? To learn more, am I living a normal life? This has been my normal for soooo long. Do I need help? I over the next weeks will read over your posts to try to learn. I am also hoping to learn of a good rheumatologist in my area. Clearwater/Tampa Florida.

Thank you for your time,

Sincerely,

CM

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Welcome!

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Hey CM

I am a male diagnosed in sept...started with blood clots in my legs.. I also live near you in St pete

I go to Dr. Nicole melendez with the Suncoast.. She was quick to help me and place me on plaquenil

I also have it mild like you do. Mostly in AM with fatigue later in day... Still working fulltime but it gets tough. May start a stronger medicine in Feb but givingbthe plaque some time to kick in...

Great support group in the area if you need it we meet first sat of the month... Stay in touch

Rob

Btw...merry Christmas to all

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Dear Cheetah_Spirit 11,

I, too was just recently diagnosed. This site has been a blessing as I have been able to ask what I feel are silly questions and get good, unconditional replies.

One thing that I would say is don't downplay your symptoms. One thing that I have found through research and websites is that this disease affects everyone differently and your doctor won't now how to treat you if you aren't absolutely honest. I originally did the same thing but find that being open and honest with my doctors help them help me.

Welcome to what I consider the best support group out there.

DeAnne

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Hi CM -
I am a member of this group who rarely ever speaks up, but I just wanted to comment on your post. I lived in the Tampa Bay area for 15 years before moving back closer to my family in Syracuse, NY a couple of years ago. I was diagnosed down there in 2003 so I’ve had a little experience with the doctors. Might I suggest that if you’re looking for a rheumatologist you may want to avoid the office of Dr’s Kramer & Miller. I don’t feel they were attentive at all and could have done more with the symptoms I was having at the time. Good luck with your search for a good doc and welcome to these boards where I’m sure you’ll find the information and support you’ll need. :slight_smile:

Rob -
You are absolutely right about the support in that area. I was a member of the support group that met at Ed White hospital in St. Pete. The facilitator at the time was named Linda and she was a wonderful woman!

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Thank you for the replies. In the first paragraph I meant to say " a false positive".

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Welcome to our family Cheetah Spirit11!!! Just know that we are always here for you and each other no matter what the situation, look forwarding to chatting with you. I was diagnosed with Lupus in 2008 and I am permenant disabled. There are alot of the family that can answer almost all of your questions about fibromyalgia and more so don't be afraid to ask. Many blessings and hugs

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Very best Wishes to you. Join the support group if you are able to. Don't underplay your symptoms to the Doc's. Keep safe & well. Kindest regards Kaz

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Hi...welcome to our LWL support family and we are glad you found us!

My story was similar to yours and for many years I did not seek the help I needed. Since coming to this site, I have learned so much and have gain much support from other members.

Because I did not know anyone else struggling as I was with my health issues...I did not know what to expect as I got worse.

You need a good doctor who can monitor you and be there for you when you need additional meds, etc. A good doctor will keep tabs on progression of your illness and offer help and resources along the way.

The site has been great in that I've learned so much...have lots of moral support and understanding. No longer do I stand alone but also seek to reach out to others. I am encouraged by those who have already given you some information that will start you on the right path.

You know your body better than anyone and don't push yourself beyond what is good for you. Having stress and overworking will do harm to you. And we all know about not being able to committ - goes with the territory! And it is OK. For your hands, there is a Bio-Freeze which is over the counter that helps...also if they get really bad...there is Voltaren gel. It is an antibiotic that goes straight to the pain.

As my fibromygia has gotten worse, I am taking lyrica which is providing some help with the nerve pain in my legs. Please feel free to seek help from any of us. We care.

There is also a fibromyalgia site also. Many times we have both.

Faye

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!st welcome!

Check this link out about lupus http://www.lupusresearchinstitute.org/about-lupus-research-institute. Plus has links for lupus groups in your area i believe.

Any doctor that spends only 8 minutes with you is not a decent doctor. Look for one that will run all the proper tests. Just one example why....with lupus if you have kidney involvement it is silent. You will not have any symptoms or feel anything so important that he check for kidney issues!

Plus, he should be helping you with all the questions you have..how to handle fatigue etc. Why you go to Rheumatologist, they are trained in this!

I am sorry you have had horrible first experience with Rheum....once you have a good to great one you will see it is night and day...and my experiences great ones spend as much time with you as you need. I would try to go to local lupus support group and ask about doctors in your area to find one that is good for you.

Welcome to here ...but again i am so sorry he treated you so poorly! 8 minutes!! almost a record! at least amount of time spent...i had another doctor..only spend 5 and than wrote out 6 prescriptions, i am not kidding! we should have topic on least amount of time spent lol!

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I hope you have excellent Doctor. Sure you know stats about men and SLE?! So far all men i have met in my life, every one has it so much worse than most women..so please take good care of yourself! have a nice christmas yourself!!

robc said:

Hey CM

I am a male diagnosed in sept...started with blood clots in my legs.. I also live near you in St pete

I go to Dr. Nicole melendez with the Suncoast.. She was quick to help me and place me on plaquenil

I also have it mild like you do. Mostly in AM with fatigue later in day... Still working fulltime but it gets tough. May start a stronger medicine in Feb but givingbthe plaque some time to kick in...

Great support group in the area if you need it we meet first sat of the month... Stay in touch

Rob

Btw...merry Christmas to all

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Hello CM,

Great to have you with us and i've just spoken with your on your other discussion...you need to slow your body pace and i'm adding the link here which i added on your other.

http://www.oocities.org/hotsprings/spa/9534/facts3p.html

Love Terri :)

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I started out like you....just working exhausted me and let no time for fun things. That is no way to live and my team of doctors started asking me about things i love to do. I love being in nature, grew up hiking/back packing with my family in 1960's so hardly anyone was doing it!!

Well, finally a old but good friend said...why don't your ride (on horseback) in..stay week and just do day trips from your main camp. I brought this up to my husband, other doctors, and all thought it was excellent idea. The main camp for horses was just little over mile from our camp so if i did get bad sick, my husband could easily get there fast...which was my biggest worry..what happens if i got sick??

First trip...we had so much fun! Yes, i had to ice my feet since i have bad Ra in them, in every stream i come too...but there were a lot so worked out well. My husband fly fished, when i would read and rest...and I always loved to take photos.

Eventually....i hiked carrying back pack on my own! I came to realize (which my doctors had kept telling me and i thought they were wacko) that pain you get from having fun for some reason, hurts but it well, worth it! You do not seem to mind it as much. Also i learned that your mind can not feel pain if you can concentrate on something else...for me, it was beauty surrounding me, camera shots etc. Plus my team of doctors..helped me get best shoes etc, pt made sure i was walking correctly so i not place as much weight on worse RA areas of my feet and they gave me strong pain meds. Not a lot but to help with Ibuprofen.

Yes I did get sick out more than few times....but it all worked out okay! I still go out and walk my dogs daily in nature but i live in it! I have beautiful lake and 2nd tallest mtn in lower US very near my house. Snow is hard on me now...and if i could afford two houses i leave here in the winter like many do..but it still is not snow all winter or as much as Tahoe where my family has a cabin.

My point is...with right team, some good friends or a partner, you can have a very enjoyable life even with disease! I am glad another guy answered. I do know that for many guys it can be worse but they now know so much more about it. I think it is important that you have own gender to give you support since it does affect males different.

I hope it stays mild, only big issue is living in Florida and being out in Sun. Hope wearing hats is now common and just do not try and push it with midday sun. I just would stay in the shade while my family would go to lake Tahoe for day of swimming.

So you can have really happy life is my point! Huge part of this is your attitude about it like most things in life!! :=)

hope you have long and happy life despite it!! if not lots of people here

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Hi Cheetah , welcome to the family "Living with LUPUS " . Hope that you fingd the support here !!! (i know that i have since Feb. 2011) . It's great to know that there is someone who understand you without asking so many questions !!!! smile And you get to know people in different parts of the world - ( even though you probably haven't been there ) . Well once again , WELCOME to the family and hope that you enjoy the time that you will spend here with us that are "Living with LUPUS " ..... Beverly L.

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Hey cheetah,welcome honey all your symptoms are relatable…Everyone is different but share the same experience…Im glad your here and hope you find what you’re looking for…Welcome on this journey as we all fight for Lupus

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Hi Butterflyfor kimmi, that's really nice the way you put those words to welcome her !!! and Cheetah welcome to the family once again ...Beverly L.

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Warmest Welcome to you. I hope you remain a 'mild case' good on ypu for working. Part time, Full time at least you are giving it a red hot go! I'm new (ish) Dx Aug 2012. Still working it out with advice & input from this group & a local support group + the docs. Kind Regards Kaz xo

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Welcome to the family of Living with LUPUS!!!!! Hope that you enjoy this support group also. It really has helped me to have people that understand how am feeling and the changes that we live with . Once again welcome to the family...Beverly L.

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Thank you all, I have been reading through a lot of post’s to learn a much as I can about lupus. I have a positive ANA and many symptoms, but think I need further tests. I do have an appt with a rheumy Jan 9th. So will have to wait it out. Can you have a positive ANA and symptoms but not have lupus?

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Hello Cheetah_spirit,

A positive ANA cane come in and show positive for other autoimmune diseases but usually alot are still linked where Lupus is concerned...you may find this link interesting :)

http://www.lupus.org/webmodules/webarticlesnet/templates/default.aspx?a=380&template=print-article.htm