I was diagnoised by 2 doctors 5 yrs ago with lupus. One of those is deceased and the other left the group. So being forced to start over I have seen several doctors. I went to GI since I had a GI bleed due to meds. He gave me the run around unable to explain abdonmenal pain. I have had total hysto so no female problem. The new rhumo guy says not signs so far of lupus and blames my pain on weight gain. I saw a surgeon as the GI rcommended thinkng it was scar tissue pain that was not the case. I am miserable cant function well, I work 3 twelve hour night shifts a week and when they are done I am useless..... The pain wakes me at night, I literally hurt from the top of my head to the bottom of my feet, I feel exausted all the time. MY face i must pile on make up for the rash. The rheumo that says no sighns on lupus left me on plaquinel. I am confused more than ever. Pain meds are not what i seek I just want confort and be able to enjoy a day off. Mind you when I was first diagnoised i weighred 130 and yes I have gained weight but this isn't the reason I hurt all the time.
Help !!! Is there anyone else that sufers as I am?
LeAnn
I have copies and took to new dr guess that is why he left me on plaquenil.... i just know my weight gain isnt all to blame.
There’s so much I want to say. I feel angry because of the runaround you’re being dished. Let me start by saying, I’m so glad you shared. I’m sure you’ll get a lot of great feedback. Another thought is, if pain is waking you up, how can it be from weight? You’re lying down. So. It sounds like there’s another reason for your pain. Is there any way you can get your records from the doctor’s office that diagnosed you with lupus to show your current rheumatologist? It also sounds like you may need a new rheumatologist, someone who won’t be so dismissive of your very real symptoms. Don’t give up. Keep sharing. Best, Kim
Cherry, this is so typical of what happens to a lot of us. I am not minimizing what you are going through right now but you may have to keep searching for the right person to help you. Have you thought about going to a pain management doctor. Rheumys do not normally give you pain medication. I had one rheumy that said 2 Tylenol at the most should take care of the pain. RIGHT! I kept going to my pain doc and ignored that directive. That doc also told me that Lupus rarely caused pain and it must be the fibro is all. Good luck and know that you are not alone.
I just read that your new rheumatologist has your records and kept you on plaquenil. If he doesn’t think you have lupus, what’s his explanation for keeping you on plaquenil? Have you noticed a difference since you’ve been on it? It doesn’t sound like it. I still would check out another rheumatologist in your area whom you feel satisfied with.
Where are you? I’m sorry you are going through this. I went to countless drs before I found my Rheumo. I pray that you find that right dr. Don’t give up, “just keep swimming”!!
Hi Cherrybaum. I am going through very similar circumstances. My former PCP suspected lupus after years of symptoms, and several months of positive ANA. She sent me to my former rheumy who didn't hesitate to diagnose me with lupus. She put me on plaquenil. That was two years ago. She was very difficult to see and was very into infusions for any complaint. So, I went to a different rheumy. He ran numerous tests, reviewed past rheumy's records, etc. He said that if it weren't for my former rheumy's tests and diagnosis, he would say I do not have lupus. He also said that if the plaquenil is making me feel better, then I should stay on it. It was like a punch in the stomach. I am having horrible bone type pains in my arm and leg and joint pain in several other places. So, do I, or did I have lupus? Does the plaquenil keep the ANA tests negative? Granted, most of my joint pains are non-inflammatory. I rarely get the swelling that I have read about.
Anyway, I do understand how you feel. I am so tempted to stop plaquenil to see if lupus rears its ugly head again so I can have proof of how I feel. Silly?
Thank you for sharing your situation. I feel your pain. I just went to a new rheumy a couple weeks ago and he decided to retest me as he is suspicious of my lupus diagnosis that I got from 2 rheumies and 2 internist 9 years ago. I don’t show any symptoms right now, no kidding I am on Cellcept! He thinks it is too strong of a medication for me. I am allergic to quinine and already had the Imuran fail. My last rheumy told me that we have to make the cellcept work( even though it causes stomach issues) because there are too few options left at my age. So after a thirty minute visit and not reading anything of my previous history he wants to change everything. Ok so I don’t have swelling, I haven’t had kidney involvement, then please explain the pain, the seizures, the liver issues, the rashes from the sun etc…
They do sometimes make us feel like it is all in our head. But just know there are people out there that believe you. It is not in your head. Keep fighting- that’s what I plan to do!
Cherrybaum,
I am sorry that you are having such a hard time. Unfortunately many of us here have had experiance with doc's just sucked. My last Rheumy didn't want to deal with me anymore, and had his nurse call me and tell me I was "healed", all because after joining this group and learning as much as I did from others, I questioned his way of treating me. (Which btw was only taking Vicodin and Norco and Steroids)
I ended up doing a lot of research online for Rheumy's that specialize in Lupus in my area. And thankfully so far so good with this new guy.
I really wish you the best in finding a good doc to help you and treat you appropriately. I am finding there is a lot of trial and error in this autoimmune game.
My comment is about Drs. the smarter they are the dumber they are!
Plaquenil can help to keep you in remission and or make your flares less ou CAN have lupus with negative lab work while the disease is quiescent. However stopping the plaquenil suddenly can lead to a life threatening flare Time to diagnose the reason for the bone pain which often is NOT lupus related. Go to your intern or an orthopedist fortheir input
artchick said:
Hi Cherrybaum. I am going through very similar circumstances. My former PCP suspected lupus after years of symptoms, and several months of positive ANA. She sent me to my former rheumy who didn't hesitate to diagnose me with lupus. She put me on plaquenil. That was two years ago. She was very difficult to see and was very into infusions for any complaint. So, I went to a different rheumy. He ran numerous tests, reviewed past rheumy's records, etc. He said that if it weren't for my former rheumy's tests and diagnosis, he would say I do not have lupus. He also said that if the plaquenil is making me feel better, then I should stay on it. It was like a punch in the stomach. I am having horrible bone type pains in my arm and leg and joint pain in several other places. So, do I, or did I have lupus? Does the plaquenil keep the ANA tests negative? Granted, most of my joint pains are non-inflammatory. I rarely get the swelling that I have read about.
Anyway, I do understand how you feel. I am so tempted to stop plaquenil to see if lupus rears its ugly head again so I can have proof of how I feel. Silly?
I completely know how you feel! I was first diagnosed by mayo clinic in June. After traveling back and forth to mayo it took a tole on our finances. So we got doctors closer to home and now the Kidney doctor is saying he doesn't see anything wrong with my kidneys and why am I there. In June my kidneys were functioning only 50%. I am thankful they caught it in time, and were able to bring the function back up. We were told by mayo if we wanted to transfer I had to have a kidney doctor. And he said that the main indicator of lupus is negative... So I am completely confused. I am just thankful my PCP listens to me and is doing all he can to get me feeling like a person again. I hope you can get everything straightened, and they can get you feeling better! Its not fun spending your days off feeling so bad! Wish you the best of luck! :)
Bless your heart....find a new Rheumy..NOW!!!! They just don't leave you on a med for no reason!!!! You are suffering and there is no excuse for it! Do you have to wear makeup? I stopped wearing it the minute my rash appeared, over 10 years ago, and my skins feels so much better for it. Find doctors who will listen to you and make you feel comfortable with you...I'm going through finding a new GI doc right now.
Keep a list of your medical history and medications so you can take it with you to every appointment. My DH and I both do this and it has helped in the ER so many times. We take it to our many doctor appts, too, so we don't have to fill out the forms over and over each time we go. We have it on a PC document and just update it and print it out when needed.
YOU have the upper hand and are in control...not the doctors who seem to not have a clue...those days are over!
Prayers for strength and comfort are with you!
Lori
I wish I had the guts to ask some of these doctors where they ranked in their graduating class. Some people think I have a lot of nerve with the way I am with doctors....like firing the incompetent ones...but I don't have enough nerve YET to ask them that.
I saw my pain management doctor today and as soon as I told him about the lack of enough proper pain medication after my knee replacement and the upcoming back fusion he didn't even wait until I said anymore. He was on how he is going to help me feel better now, how he will be available right away after surgery, then what we will try to do after I am healed from the back surgery. Every time I see him I want to give him a hug. He has dealt with severe pain himself and almost died. Had 5 surgeries after the boat accident, almost bled out in the water, wasn't sure they would even save the leg let alone ever walk again, etc. You would never know he went through that. He walks as if nothing had ever happened. He KNOWS what I feel.
Cherrybaum, so sorry you are going through so much. I take plaquenil too and I am in a good place at the moment. I have back and neck problems and will need surgery someday. So I take vicodin during the day and ambien at night so the pain doesn't wake me up. I do not abuse these meds they let me live my life. Maybe you could find some relief too with pain meds. I know right now it is hard to get them because a few people use them to get high. There are those of us who really need them. I am lucky to have a great Rheumy!
Keep us posted!
I for one will not stay with a doctor if I am not satisfied with them. I have switched Drs. on more than one occasion, because I wasn't satisfied. The Rheumy I see I have been with for 17 or 18 years, except a few years when I lived in Nashville, and saw a great Rheumy at Vanderbilt. It really means a lot to have a good doctor. The FDA is now wanting to move hydrocodone to schedule II narcotic, which for people who really need the pain medicine will be more of a hassle.
Thank all of you for your input since joining this group i have learned alot and feel that i am not alone in this battle. You all give me hope and support I much needed.
My husband just had surgery and his doctor gave him Norco for pain....the pharmacy made us show our ID before we could pick it up...this is new for Norco! We have both been given Norco many times in the past without any ID required.
I'm in a lot of pain tonight and took one of my few remaining Percocets...it is the only thing that helps me since I'm immune to lesser pain meds now. My rheumy won't give me any pain meds and increased my prednisone instead....it didn't help at all...I see him on Wednesday and I'm going to ask to see a pain mgmt. doctor if he won't give me something to help.
Lori
You can research your doctors online and see their history and educational background. My ortho surgeon graduated second in his class in medical school and took lots of special training at great medical schools. He is highly recommended and I've been with him for over 15 years.
My rheumy's office has grown to two locations since I've been with him. He is overwhelmed with patients and had to hire a PA to help out. I've been with him ten years this month.
So, you don't have to put up with crap when it comes to your health! I've told off so many ER doctors because they didn't take me seriously and blew me off. I still do and have done so recently when one refused to check my blood sugar when I was there for a CT scan of my head after a fall. Got home and my sugar was through the roof! I let him have it before I left the ER and the charge nurse escorted me out of the hospital.....I was so sick and knew my sugar was high, but they didn't believe me! Told them I had SLE, etc.....didn't care!
Lori
I get severe abdominal pain also. It turned out that I have vasculitis related to lupus and my abdominal wall was hemrrhaging internally, IBS, and kidney stones. Prednisone made the abdominal pain worse. It got so bad for a while that I was given fentanyl patches for the pain. Now I just take norco. I had to revamp my diet, cutting out almost all beef (traditionally raised cattle are given hormones etc… That were affecting me poorly), cutting out sodas, eating much more fruits and vegies, and minimizing how much chicken and fish I eat. I also cut out all hard alcohol. Within 3 months my abdominal pain became much more bearable. My current rheumy has the god complex and won’t prescribe the meds that work really well that my last rheumy had no problem with. I can’t work, can barely clean my house thanks to the car accidents that messed up my back and the overwhelming fatigue and he just blows me off when I complain. I’ll be searching for a more empathetic rheumy soon. Oh, alcohol and the sun trigger my face rash so you might want to figure out if anything triggers yours. Hope you get a better doc soon. Gentle hugs, Annemarie