I've been having issues with fatigue, weakness and muscle aches for months now...getting no where with these doctors..went to see my rheumatologist today to see if he would write me off work on medical leave because i'm missing so much time off work and I feel shitty all the time, and he basically says he will only do 2 weeks and accuses me of not wanting to work!!! Then they suggest maybe I have fibromyalgia on top of my lupus nephritis...All these dr's do is make me feel bad time after time...No idea what to do...so depressed over it...Anyone else have issues with getting dr's to sympathize???
Hello heath,
Well all the issues your having do come with Lupus or with any autoimmune disease connected and why not ask your GP not the rheumo because here in the uk signing off is dealt with GP's only.
I'm being straight i've never heard nothing like it "Suggesting you may have fibromyalgia"...you don't just suggest...have bloods been done to make sure? and why he won't sign you off longer god knows because Lupus can cause we to be very ill at times...try not to get to depressed as i've mentioned this several times although i suffer with manic depression myself...Lupus thrieves of it and how you feel bad now your symptoms will feel worse.
To what you say though i do understand i've got a great Dermo doing his job besides my Rheumo and last time i saw him..he talks to you like he's undermining what you say besides my history, so i went back at him and told him he could'nt see his other 5 patients till i'd finished, well put it like this it did'nt go down well and he sent a letter to my GP saying i was talking in medical terms when i should'nt WHY BECAUSE I KNOW WHAT'S HAPPENING.
Sorry for the caps but i'm putting out we're not stupid.
((A large hug your way and i do feel for you)) Terri xxx
Hi Terri-
Thanks so much for the feedback...I guess I never thought about asking my GP because I dont actually see her that often because she doesnt understand the disease, but maybe i should consider going to see her...The dr's have run many many tests and all of them are coming back normal or negative..they keep saying my lupus isnt "active" according to all their blood work so they thought based on my symptoms it was fibromyalgia and you cant really test for that...blood tests dont show anything when u have it...they started me back on a low dose of prednisone and cymbalta. I'm just sick of them dismissing me like i am some nutso that wants to lay around the house and be a bum...they dont even try to understand or get to know me, and if they did they would know i am NOT that kind of person..i wouldnt ask for short-term if i didnt feel like i needed it...I brought my sister to my dr appt today becuase shes a lot stronger of a person than I am and when she started to question the dr he started to cower...apparently they dont do well with confrontation....We already battle an illness every single day.. i dont need to battle my doctors too...:/
Hello Heath,
I'd go and see your GP about it and tell her your symptoms, there's no harm in asking.
I've heard this that many times it drives me mad because your bloods have come back negative your lupus is not active...all specialist's know this but you do get some stubborn ones who won't go no furthur unless results are showing positive...Lupus messes about with our bloods and fluctuates them badly and can give off false readings they know this, so your bloods may have been positive but "Old Lupus" thought i'll show them negative today..get my drift.
All my bloods came in positive except for my anaemia which i new i'd got again, then my rheumo the first time seeing me, told the nurse to get the right patient in and i told him i was that person and he said your bloods are showing 8.0 and bloods must be getting crossed with another patient, he would'nt give me nothing except folic acid tablets but after 6mths months my bloods confirmed i had got anaemia and now i'm on b12 jabs for life also....that man drives me mad. "Headcase or what"
Actually this is the impression i get with rheumo's although lupus is studied in the same field...i think they just like dealing with RA because even lupus being so complicated is out of their fields unless you real come across a doctor so dedicated to both and good for your sister testing him.
My dr. sometimes does the same thing. when I complained about the muscle aches and pains, she was quick to say
" that's not your lupus".. so what is it... (me) probably fibromyalgia (dr.)... it took research on my part that revealed that fibro and lupus go hand in hand.. I have been taking 30mg of cymbalta which seems to be helping.. lyrica gave me terrible nightmares. Low dose of cymbalta helps me. Dr's can appear to be flippant sometimes, unfortunately, sorry for the experience.
@prtyblk1-yea they finally said it is probably fibro and I will be taking cymbalta for it...I'm just sick of them making me feel like i am nuts and making me feel bad...Yes I'm depressed, because not only do i have to deal with this pain everyday but I have to fight with my doctors to understand and help and not dismiss it like i am just trying to sit at home for no reason. I'm not that kind of person, its just I cant keep forcing myself to work or call off-it's a vicious cycle. So angry they arent more understanding....I just wanted the time off to fix the problem and get better...
it's a shame the dr can't understand. About a year ago when I was first diagnosed I went to a psychiatrist that helped me take some time off to get a handle on my health issues. On top of lupus, i have sjogrens and anti-phospoloid disease. The fibro is just as much as past of the symptoms and disease process of lupus as everything else. Perhaps seeing a therapist van convince your rheumy to write you out for a while so you can deal with the disease.
Oh that is a great idea..I will definitely look into that..plus i think it might help with the depression at this point too..thanks so much!
I’ve been battling with doctors as well. It’s so hard and frustrating! I know exactly how u feel. Tests are coming back negative for everything. So theyre saying it’s fibro. Tried me on cymbalta, and that was just horrible! My body didnt take to it. The only thing is that I have lumps on my lymph nodes, and apparently fibro doesn’t cause that. So it’s back to more testing, and missing more work. So I feel the same frustration as you do! I hope that things get better for you though!
Tiffany,
Although you feel flustrated you just need to wait for you appointment and see what the outcome is...as we all go through these issues at times and your not alone by a long chalk.
((Keep strong)) xxx
Tiffany89 said:
I've been battling with doctors as well. It's so hard and frustrating! I know exactly how u feel. Tests are coming back negative for everything. So theyre saying it's fibro. Tried me on cymbalta, and that was just horrible! My body didnt take to it. The only thing is that I have lumps on my lymph nodes, and apparently fibro doesn't cause that. So it's back to more testing, and missing more work. So I feel the same frustration as you do! I hope that things get better for you though!
I sympathize with you. I am feeling all what u are at this moment. I have Fibromyalgia too with lupus but my lupus is early stage so not sure exactly what kind I have. Right now I’m just miserable and working through this miserable feeling. I can’t miss or afford to miss! Thankful that my dr sympathize with me and is working with me to help find some relief for me. Praying for you! Stay positive!
i feel it too...in fact, i just grumbled my way out the back door and said aloud all the things making me so mad---and i used curse words too...no one to hear me but my shoes (as they say)
and when i came back inside I felt a little better. I got mad, I let it be said and then I asked God to help me deal with with it. He hasn't let me down yet...(she says as she peeks over the edge to see how far she'll fall if He does let her down this time....eek...it is a long long fall.)
Thank you all for your feedback...I have an appt with my primary care physician next week so i'm going to see if she will extend my medical leave and possibly refer me to a new rheumy since my current one apparently has the emotional range of a pea....I wont give up until someone actually cares and listens to me and how I feel...
Hello heath,
Your welcome from us all....that's what we're here for to support one another.
Yes i'd speak with your primary physician and see how it goes from there and we're all welcome to a 2nd opinion and glad to hear your carruing fighting spirit....as long as you carry that nothing can beat you. xxx
heath2982 said:
Thank you all for your feedback...I have an appt with my primary care physician next week so i'm going to see if she will extend my medical leave and possibly refer me to a new rheumy since my current one apparently has the emotional range of a pea....I wont give up until someone actually cares and listens to me and how I feel...
heath, I've had fibromyalgia for years and was recently diagnosed with lupus. My internist said it is possible the Fibromyalgia turned into Lupus. I too struggle with being fatigued, weak and ache constantly. So, I don't know either if the fibromyalgia was actually lupus all these years or not. Most doctors are so illiterate about the subject, I don't necessarily trust my initial diagnosis any more.
Thanks Terri!! And Yes Kadeeeee thats how i feel...I feel like these dr's know so little about both diseases that they just play the guessing game, and they definitely rely too heavily on their "test results"...just becuase the blood work doesnt show something doesnt mean it isnt there...I have a feeling my life is going to be a battle with these people...and because they cant see it they think we are complainers and dont want to work..Makes me so angry how they judge us...
Heath, all drs. aren't created equal. Don't stick with one for no reason. Quite by accident after all these years I happened to go to an Internist who did her internship with a doctor doing fibromyalgia, lupus research. What a difference to be able to lay it all out and be taken seriously. She actually has to pull my aches and pains complaints out of me because I've been made to feel like I'm a psych case for too long.