caden/logan_mom
11-12-2004, 06:06 AM
Hi all,
I was recently diagnosed with Fibromyalgia but I'm feeling like it's not answering all my questions. I was initially diagnosed with Lupus and I know all of these crazy illness can overlap as well. I'm feeling very confused and not sure where to begin as far as treatment and symptom relief are concerned. I was just looking for a little clarification and wondering about these symptoms which have been left without explanation to me.... I haven't found any literature that states they occur w/ Fibromyalgia but thought who better to ask than Fibromites right?
Are any of you photosensitive? Do your symptoms of pain/fatigue worsen after sun exposure or do you have rashes that crop up after sun?
Do you get mouth sores, what are they like?
Do you get low grade fevers?
Do you have lymph tenderness and swelling?
Do you have joint swelling or redness?
Do you flare with menstration??
Do you have easy bruising or delayed healing?
Also, has anyone ever used steroids like prednisone and seen improvement in their symptoms all around and especially their muscle and joint pain?
Now joint pain does occur with fibromyalgia, is this right?
Thank you all so much for taking the time to help me find answers to my seemingly unanswered questions. I'm getting ready to go back to my PCP and trying to get together some good questions. I feel like I definetely do have Fibromyalgia, I just don't feel like that is all I have going on. I have or have had all of these symptoms or occurances and now I'm just looking for answers. Thanks again to everyone!
Love,
Shawnee
I was recently diagnosed with Fibromyalgia but I'm feeling like it's not answering all my questions. I was initially diagnosed with Lupus and I know all of these crazy illness can overlap as well. I'm feeling very confused and not sure where to begin as far as treatment and symptom relief are concerned. I was just looking for a little clarification and wondering about these symptoms which have been left without explanation to me.... I haven't found any literature that states they occur w/ Fibromyalgia but thought who better to ask than Fibromites right?
Are any of you photosensitive? Do your symptoms of pain/fatigue worsen after sun exposure or do you have rashes that crop up after sun?
Do you get mouth sores, what are they like?
Do you get low grade fevers?
Do you have lymph tenderness and swelling?
Do you have joint swelling or redness?
Do you flare with menstration??
Do you have easy bruising or delayed healing?
Also, has anyone ever used steroids like prednisone and seen improvement in their symptoms all around and especially their muscle and joint pain?
Now joint pain does occur with fibromyalgia, is this right?
Thank you all so much for taking the time to help me find answers to my seemingly unanswered questions. I'm getting ready to go back to my PCP and trying to get together some good questions. I feel like I definetely do have Fibromyalgia, I just don't feel like that is all I have going on. I have or have had all of these symptoms or occurances and now I'm just looking for answers. Thanks again to everyone!
Love,
Shawnee
Sponsor
Vickie24
11-13-2004, 04:30 AM
Are any of you photosensitive? [COLOR=Purple]Yes
Do your symptoms of pain/fatigue worsen after sun exposure or do you have rashes that crop up after sun? [COLOR=Purple] Yes...pain often is worse after sun exposure and I frequently get a red, itchy rash on exposed areas...especially arms & face.
Do you get mouth sores, what are they like? [COLOR=Purple] Yes, like fever/cold sores inside mouth...usually nearer gum area.
Do you get low grade fevers? [COLOR=Purple] sometimes
Do you have lymph tenderness and swelling? [COLOR=Purple] sometimes
Do you have joint swelling or redness? [COLOR=Purple] Yes, especially knees, ankles and elbows
Do you flare with menstration?? [COLOR=Purple] more aching joints then....not sure if it's due to homones though.
Do you have easy bruising or delayed healing? [COLOR=Purple] I bruise very easily.....Healing does seem to take longer but not extremely prolonged.
Also, has anyone ever used steroids like prednisone and seen improvement in their symptoms all around and especially their muscle and joint pain? [COLOR=Purple] Yes...This is most interesting. I have been on Prednisone the last 12 days for an asthma flare and I am noticing a wonderful improvement in muscle & joint pain. It has almost been non existant at times. I am feeling much better overall. I am most definiteley interested in finding out more info on this subject. I was diagnosed with Lupus about 10 years or so ago by a doctor at Kaiser and put on Plaquenil. Just before leaving Kaiser he said I was in remission so I eventually took it upon myself to stop the Plaquenil...which was probably not too bright on my part. Anyway, I had to move to another medical plan due to changing jobs. I starting having symptoms again really bad so I found a new Rheumatologist who seems to think I "may" have a mild form of Lupus so he put me back on Plaquenil and ordered a sleep study. Seems to think I may have sleep apnea...even though I have none of the symjptoms really. The only sleep problem I have is taking a long time to fall asleep; which a lot of the times is probably related to hubby snoring. So the Rhuemi seems to think that most of my problem is really Fibromyalgia. He is so wishy washy though. Won't say which it is for sure till he sees the sleep study results which I go in for the test on Dec. 1st. Now he is the thing about the Prednisone that got me thinking. I went in for my asthma recheck to my regular doctor on Wednesday and she asked if the Prednisone was helping with any of the Lupus aches & pains and I said " well come now that you mention it, it has. I realized that I was feeling so much better in those areas." She said that was one of the wonderful side effects of Prednisone. I had read something that if you had Fibro that things like Prednisone and regular pain relievers would do nothing for it but the fact that I respond to Prednisonhe makes me think that I defininely Do Have Lupus, as well as Fibro. Hope this helps. Sorry for rambling on. Your comments would be appreciated.
Thanks...Vickie :D
Now joint pain does occur with fibromyalgia, is this right? Yes
Do your symptoms of pain/fatigue worsen after sun exposure or do you have rashes that crop up after sun? [COLOR=Purple] Yes...pain often is worse after sun exposure and I frequently get a red, itchy rash on exposed areas...especially arms & face.
Do you get mouth sores, what are they like? [COLOR=Purple] Yes, like fever/cold sores inside mouth...usually nearer gum area.
Do you get low grade fevers? [COLOR=Purple] sometimes
Do you have lymph tenderness and swelling? [COLOR=Purple] sometimes
Do you have joint swelling or redness? [COLOR=Purple] Yes, especially knees, ankles and elbows
Do you flare with menstration?? [COLOR=Purple] more aching joints then....not sure if it's due to homones though.
Do you have easy bruising or delayed healing? [COLOR=Purple] I bruise very easily.....Healing does seem to take longer but not extremely prolonged.
Also, has anyone ever used steroids like prednisone and seen improvement in their symptoms all around and especially their muscle and joint pain? [COLOR=Purple] Yes...This is most interesting. I have been on Prednisone the last 12 days for an asthma flare and I am noticing a wonderful improvement in muscle & joint pain. It has almost been non existant at times. I am feeling much better overall. I am most definiteley interested in finding out more info on this subject. I was diagnosed with Lupus about 10 years or so ago by a doctor at Kaiser and put on Plaquenil. Just before leaving Kaiser he said I was in remission so I eventually took it upon myself to stop the Plaquenil...which was probably not too bright on my part. Anyway, I had to move to another medical plan due to changing jobs. I starting having symptoms again really bad so I found a new Rheumatologist who seems to think I "may" have a mild form of Lupus so he put me back on Plaquenil and ordered a sleep study. Seems to think I may have sleep apnea...even though I have none of the symjptoms really. The only sleep problem I have is taking a long time to fall asleep; which a lot of the times is probably related to hubby snoring. So the Rhuemi seems to think that most of my problem is really Fibromyalgia. He is so wishy washy though. Won't say which it is for sure till he sees the sleep study results which I go in for the test on Dec. 1st. Now he is the thing about the Prednisone that got me thinking. I went in for my asthma recheck to my regular doctor on Wednesday and she asked if the Prednisone was helping with any of the Lupus aches & pains and I said " well come now that you mention it, it has. I realized that I was feeling so much better in those areas." She said that was one of the wonderful side effects of Prednisone. I had read something that if you had Fibro that things like Prednisone and regular pain relievers would do nothing for it but the fact that I respond to Prednisonhe makes me think that I defininely Do Have Lupus, as well as Fibro. Hope this helps. Sorry for rambling on. Your comments would be appreciated.
Thanks...Vickie :D
Now joint pain does occur with fibromyalgia, is this right? Yes
shadowrose40
11-13-2004, 07:57 PM
Hi all,
I was recently diagnosed with Fibromyalgia but I'm feeling like it's not answering all my questions. I was initially diagnosed with Lupus and I know all of these crazy illness can overlap as well. I'm feeling very confused and not sure where to begin as far as treatment and symptom relief are concerned. I was just looking for a little clarification and wondering about these symptoms which have been left without explanation to me.... I haven't found any literature that states they occur w/ Fibromyalgia but thought who better to ask than Fibromites right?
Are any of you photosensitive? Do your symptoms of pain/fatigue worsen after sun exposure or do you have rashes that crop up after sun?
Do you get mouth sores, what are they like?
Do you get low grade fevers?
Do you have lymph tenderness and swelling?
Do you have joint swelling or redness?
Do you flare with menstration??
Do you have easy bruising or delayed healing?
Also, has anyone ever used steroids like prednisone and seen improvement in their symptoms all around and especially their muscle and joint pain?
Now joint pain does occur with fibromyalgia, is this right?
Thank you all so much for taking the time to help me find answers to my seemingly unanswered questions. I'm getting ready to go back to my PCP and trying to get together some good questions. I feel like I definetely do have Fibromyalgia, I just don't feel like that is all I have going on. I have or have had all of these symptoms or occurances and now I'm just looking for answers. Thanks again to everyone!
Love,
Shawnee
A lot of the symptoms you describe are more CFS type that fibro type, such as mouth sores, fevers, swollen glands.
Fibro is not supposed to cause ANY swelling or discoloration at all.
It most certainly does cause muscle pain, that can feel like joint pain, though.
Others of your symptoms, like the sun issues, sounds more like the Lupus. Do you not have lupus? Or did the diagnose fibro on top of it.
I was recently diagnosed with Fibromyalgia but I'm feeling like it's not answering all my questions. I was initially diagnosed with Lupus and I know all of these crazy illness can overlap as well. I'm feeling very confused and not sure where to begin as far as treatment and symptom relief are concerned. I was just looking for a little clarification and wondering about these symptoms which have been left without explanation to me.... I haven't found any literature that states they occur w/ Fibromyalgia but thought who better to ask than Fibromites right?
Are any of you photosensitive? Do your symptoms of pain/fatigue worsen after sun exposure or do you have rashes that crop up after sun?
Do you get mouth sores, what are they like?
Do you get low grade fevers?
Do you have lymph tenderness and swelling?
Do you have joint swelling or redness?
Do you flare with menstration??
Do you have easy bruising or delayed healing?
Also, has anyone ever used steroids like prednisone and seen improvement in their symptoms all around and especially their muscle and joint pain?
Now joint pain does occur with fibromyalgia, is this right?
Thank you all so much for taking the time to help me find answers to my seemingly unanswered questions. I'm getting ready to go back to my PCP and trying to get together some good questions. I feel like I definetely do have Fibromyalgia, I just don't feel like that is all I have going on. I have or have had all of these symptoms or occurances and now I'm just looking for answers. Thanks again to everyone!
Love,
Shawnee
A lot of the symptoms you describe are more CFS type that fibro type, such as mouth sores, fevers, swollen glands.
Fibro is not supposed to cause ANY swelling or discoloration at all.
It most certainly does cause muscle pain, that can feel like joint pain, though.
Others of your symptoms, like the sun issues, sounds more like the Lupus. Do you not have lupus? Or did the diagnose fibro on top of it.
caden/logan_mom
11-17-2004, 02:57 AM
Thank you Vicki!
You have reaffirmed my current thinking. I absolutely believe I have Fibromyalgia but I don't think that's all. I think I do have Lupus as well but that right now (other than positive ANA) it's sero-negative. I wonder how many years it may be before I can finally get a diagnosis that makes sense in every aspect and covers all my symptoms and then warrants proper treatment? I guess we've probably all asked ourselves that a thousand times already huh? And Shadowrose, thank you too! I just kept thinking this but it's nice to hear it from someone else too. I've been diagnosed w/ Lupus by my primary care physician but when I saw a rheumatologist they diagnosed me with Fibromyalgia, Central Pain Syndrome, and Hashi's thyroid. But then I was left with all these other questions that didn't seem to have an explanation. I felt a little crazy to tell you the truth! My best to both of you! Good luck with your sleep study Vicki, I'm a sleep lab technician actually, it's not bad trust me! Let me know how it goes okay!?
Thanks again!
Love,
Shawnee
You have reaffirmed my current thinking. I absolutely believe I have Fibromyalgia but I don't think that's all. I think I do have Lupus as well but that right now (other than positive ANA) it's sero-negative. I wonder how many years it may be before I can finally get a diagnosis that makes sense in every aspect and covers all my symptoms and then warrants proper treatment? I guess we've probably all asked ourselves that a thousand times already huh? And Shadowrose, thank you too! I just kept thinking this but it's nice to hear it from someone else too. I've been diagnosed w/ Lupus by my primary care physician but when I saw a rheumatologist they diagnosed me with Fibromyalgia, Central Pain Syndrome, and Hashi's thyroid. But then I was left with all these other questions that didn't seem to have an explanation. I felt a little crazy to tell you the truth! My best to both of you! Good luck with your sleep study Vicki, I'm a sleep lab technician actually, it's not bad trust me! Let me know how it goes okay!?
Thanks again!
Love,
Shawnee
Vickie24
11-17-2004, 04:13 AM
Thanks for all the kind words. Any tips for the sleep study? Do I need to do anything to prepare? What happens if you can't sleep? It's hard in unfamilar surroundings for me........Vickie
caden/logan_mom
11-17-2004, 04:34 AM
Don't worry Vicki, everybody sleeps!! Every one of my patients says they won't be able to sleep and everybody does! Just do your best. Sometimes the doctor will order a pre-study ABG that you just have to get done before you go. Bring a pillow or something from home if it will help you. Also even though it says not to use sleep medications on the instructions, if you use them you still may want to bring them with you just in case but be sure it's okay with the technician before you take them. I hope it goes okay! Good luck!
Love,
Shawnee
Love,
Shawnee
Vickie24
11-18-2004, 04:08 AM
Thanks for the info. I will keep you posted of the results.
Vickie :)
Vickie :)