Hi everyone,
I've been reading your posts and my heart goes out to all of you, especially those of you who have had troubles even getting a diagnosis and had creepy doctors. I've recently been diagnosed with lupus (the SLE kind) but I'm suspicious that I may have secondary Fibromyalgia and wonder if you experts could offer me a little insight and advice. I have joint pain, fatigue, all the other lupus icky stuff but I'm wondering about possible fibromyalgia due to pains and stiffness (daily) in my neck, shoulder, and low back region. I also experience some muscle aches but don't know if that's lupus or what. The neck, shoulder, back, pain is usually quite stiff in the morning and my back really kills me at night when I'm tired. I am in a lupus flare now so I'm just not sure if this is just another lupus thing or what. I don't go a rheumatologist for four months. Can my GP doc test the trigger points for fibromyalgia. I feel like such a hypochondriac for bringing this up too with all the other things going on but I'm not sure about any of this right now. By the way I definetely have irritable bowels (although they seem more angry, hostile, and take no prisoners bowels to me). Thanks for any advice you can give me.
Have a great day!
Shawnee
It is certainly possible that you have fm also, but after ruling other conditions, If your Dr. is knowledgable about the trigger points, he or she should be able to make a diagoses. You may also have myofascal pain symdrome or something else, Fm minics a lot of things. Your rhummy should definately be able to dignose you.
Linda
__________________
pa235
Fibromyalgia
Myofascal pain syndrome
Costochondritis
Arthritis, cervical and thorastic
Last edited by pa235; 07-02-2004 at 05:48 PM.
Reason: spelling
Hi everyone,
I've been reading your posts and my heart goes out to all of you, especially those of you who have had troubles even getting a diagnosis and had creepy doctors. I've recently been diagnosed with lupus (the SLE kind) but I'm suspicious that I may have secondary Fibromyalgia and wonder if you experts could offer me a little insight and advice. I have joint pain, fatigue, all the other lupus icky stuff but I'm wondering about possible fibromyalgia due to pains and stiffness (daily) in my neck, shoulder, and low back region. I also experience some muscle aches but don't know if that's lupus or what. The neck, shoulder, back, pain is usually quite stiff in the morning and my back really kills me at night when I'm tired. I am in a lupus flare now so I'm just not sure if this is just another lupus thing or what. I don't go a rheumatologist for four months. Can my GP doc test the trigger points for fibromyalgia. I feel like such a hypochondriac for bringing this up too with all the other things going on but I'm not sure about any of this right now. By the way I definetely have irritable bowels (although they seem more angry, hostile, and take no prisoners bowels to me). Thanks for any advice you can give me.
Have a great day!
Shawnee
Hi Shawnee!
With having a confirmed dx of lupus, probably what you are experiencing is from that condition. Lupus is described as a chronic, multisystem, autoimmune, inflammatory disorder characterized chiefly by antibody formation directed against autologous tissues and serum factors. The fact that you are in a flare right now, but not scheduled to see your rheumatologist for another four months urges me to ask you to go ahead and feel comfortable about letting the rheumie's office aware of your current flare. Your flares and needs for treatment don't often go along with the calendar schedule! Lupus affects the gastrointestinal tract as well as the musculoskeletal. So please call the rheumy! I have a friend w/lupus and when she flares she needs her doctor's attention. She also is having problems with her GI and it is serious so be sure to call when you notice symptoms. Your not a hypochrondriac. You have lupus which needs to be controlled. Hope that helps!
Maybe you can get your rheumatologist to move your appointment up to a closer date so you can go get some solid answers. The very minute I feel unusal pain or something beyond what I can handle--I call mine right away.
It can't for him to check you over and see what's what.
I am a lucky winner in the lottery of disease having lupus and fibro. I got lupus at 17 and fibro at 22. My lupus has been in and out of remission over the years. When I got fibro on top of it it became very difficult to distinguish the difference between the symptoms. For a long time I kep thinking I was having lupus flares without the rash. When I became disabled 2 years ago I spent about six months arguing with my doctor over whether I was having lupus flares or fibro because I didn't know all of the symptoms of fibro. When I was diagnosed they knew almost nothing about it.
But after two years of clean ANAs, white cell counts, etc. and more research on fibro I know she's right.
If your bloodwork is currently positive for lupus then that is the priority. But it won't hurt to have the doctor check for fibro too.
Thank you all so much for your response! You've given me much to think about. I'm going back to my GP tomorrow and telling him how this disease or these diseases are currently affecting my life. It's been six weeks of flare with no relief in site and I'm having new symptoms I've never had before a lot. I'm also going to tell him I can't get in to see the rheumatologist until October and either see if he can move it up for me or if he will at least manage my care until I get up there and get me on some Plaquenil at the least. I am going to tell him I am suspiscious about Fibromyalgia and why and ask him to do a trigger point evaluation if he can. I am going to stop trying to be the "good patient" if you know what I mean. I think I'm so worried that I'll be labeled in my chart as the hypochondriac or that every time I call some receptionist will roll her eyes or something that I've been holding back way too much when it comes to just how bad I am feeling. And you know what, I really truly think that for at least two years now I just haven't even been paying attention to myself well enough to say. Now that I"ve learned all these things I thought were just weird things nobody would listen to are related, it just amazes me that I could ignore this for as long as I did. I just kept telling myself it was nothing or that there were 10,000 reasons besides disease for what was happening to me. All in all, I guess I'm going to be a better advocate for myself. I ended up in the ER on Sunday night due to severe abdominal pain which occured as an adverse reaction to some Tylenol with codeine (I had it left over from having my baby) I took because my pain was such that I was unable to sleep. I have had quite a few nights over the past year where I'm in enough pain I can't sleep or lay comfortably etc... It made me realize that my needs are not being managed well enough and I know I do have options that will help me, I just need to bring it to the attention of my doctor (before October!!) so I can feel better. Sorry this is so long! Thanks for listening! YOu guys save my hubby from having to hear so much moaning and groaning you don't even know it! And I don't feel like I"m laying a burden on you as much as sharing burdens with you and we all carry a little bit of each others. THanks much!
Shawnee
You're right that this is a better place to vent than with our spouses.
Who better to understand Fibromyalgia than someone else who has it?
And--I have yet to meet (outside of cyberspace) anyone---man or woman--who has Fibromyalgia.
Just here.
It's good to know we have this place to come to....
Amen! Amen! Amen! Thanks you guys for listening and for all the support and help you are to me! I wish you all the best in your life and may God be with all of you!
SHawnee
Lupus affects the gastrointestinal tract as well as the musculoskeletal. So please call the rheumy! I have a friend w/lupus and when she flares she needs her doctor's attention. She also is having problems with her GI and it is serious so be sure to call when you notice symptoms. Your not a hypochrondriac. You have lupus which needs to be controlled. Hope that helps!
