well today I went to the doctor with no kids a clear mind and a list of symptoms I wanted to ask about. I've been having major pins and needles in my feet and that can be either neuropathy from the plaquenil or the lupus and my medicine isn't strong enough. I also have a rash on my scalp which can be either an allergy to the plaquenil or psoriasis. So now we are playing a game. we are doubling my side if plaquenil to 400mg a day and if any of my other symptoms get worse I have to stop. he said he hopes the doubling works because it should help my pain and fatigue more. he still won't help me with pain medication though. he told me I can take three Tylenol twice a day...really I'm sorry that won't do much!!! I think I'm going to find a pain clinic see if they can help after I give the medicine a couple weeks to work. Oh and I tested positive in 3 lymes disease tests but you need 4 for a positive diagnosis. please keep adding to my list. I was diagnosed in October I'm getting so ovoverwhelmed. next appointment and blood draw is in March if everything is going well. thanks for the support....Oh and I "came out" about my lupus to everyone today now they can know why I am the way I am.
That’s good that you are telling people, it sometimes will help others understand. You should suggest tramadol to your md. It’s pretty good. Also FYI when you have lupus you can test false positive for Lyme disease.
I am ana positive My rheumatologist says I have "the worst " kind. I had hair loss and sores inside my mouth. the plaquenil has helped both. I have fatigue but not as bad as others seen to have. I am an "old lady" so I can rest a lot even though I have a business that i spend close to 30 hours a week at. I feel guilty saying this but I have no pain. but I guess that will change. I am positive and I hope everyone will be positive too.freightliner
i am curious why you say "came out" freightliner
I hadn't told my friends or much of my family. I finally decided to t tell everyone what is going on. they know that I'm tired a lot and now they know I'm not just lazy or something.
Is there a reason why you do not take NSAIDS (Motrin, Aleve, etc)? I used NSAIDS and Plaquenil for years for my lupus which included all the symptoms you have. I too have scalp lesions but it is due to the lupus not Plaquenil- and pins and needles in both hands and feet- again related to increased lupus activity. But the anti-inflammatory drugs which even include aspirin help with all
I try sleeve but it does nothing is so frustrating.
Sorry to hear about your pain. The only thing that helps with the pins and needles in feet and hands for me is gabapentim (generic neurontin) and cymbalta. My pain management doctor is the only dr I like. He takes my pain seriously and explains how nerve pain is totally different than joint or muscle pain. Hang in and keep us posted.
I goto my norm Dr for pain meds. most rhumys wont give pain meds meds. if you keep touch Dr up room date on all symptoms and how bad thy are your more likely to get some relife from him\her. but have also had two major back surgerys. but even before that she had no problem managing the pain. used to be 90lortabs a month and 60perkocets … but after disk removal i am now on all oxiContin 30 mg ER … and pain from back and alot of joint pain is managed much better . i hate to hear that someone else has to push threw ever day with just alive . hope your symptoms get better or you can get a mild killer from your Dr. GL
I am really surprised when I hear about rheumatologists that don't prescribe NAISDS. Yes, it is a pain reliever but it is also an anti-inflammatory that works directly on the inflammation that is causing so much pain. It boggles the mind how clueless some of them can be.
I am very fortunate in that my rheumatologist, right from the start, prescribed NSAIDS and adjusted them over the years. She also willingly writes a script for 100 T3's annually.
My experience, generally, has been that the medical profession has a much more enlightened approach to pain management than in the days of tough it out. I am so sorry to hear that some rheumatologists live in the pain management dark ages.
I have been seeing a pain management doc because of a back injury for almost 10 yrs. That said, I don't have any idea how I would get through without it. In NV though, you can only have one doc prescribe pain meds. My advice would be to have your PCP or your Rhuemy write a recommendation to a pain management clinic. And "coming out" is good, but as someone who has done that, not long ago, people are understanding at first, but be prepared for some people to overly cloying and some won't understand. It's just that you should be prepared for all manner of reactions.
Best of luck,
Take a break for a MOMENT !!!! Don't overwhelm yourself with all of this.... It's okay and you will surivive okay!!!! Yes it is alot for anyone to deal with all at once , but having LUPUS (myself for 2years in Feb. ) , am passing this to you," it's only something that i got and it DON'T HAVE ME !!!! " keep that in mind when things get rough and believe in the heavenly father !!! take care and hope this comfort you and yes we are here at anytime for the support !!!! ....Beverly L.
Good luck Taesra, I hope that your Dr. can get to the bottom of what is triggering your systoms. I hope that he is a Rhuematolgist who is experienced with Lupus I never have problems with my Dr. giving me pain meds or upping my doses when need be they are very sympothetic with me and do all that the can to lessen my pain. I also had to see a Dermatologist because I too get the sores on my scalp due to sun exposure I now wear hats, and a protective mask over my face when I go out into the sun because I get that Butterfly rash and lessions , I may look like a Bank Robber driving my car and I get lots of stares but I do what I have to do to lessen the triggers and I still have to work and can't let my Illness keep me from living.
I had a rheumy who kept doubling my plaquenil and telling me to take Tylenol. I agree what a joke!!! Have a new rheumy now and she said to take as much Advil as I need to feel better just try not to exceed 12-16 a day. She said the possible side effects of NSAIDs are certainly no worse than steroids, methotrexate, etc and all the other drugs used to treat lupus. Good luck!!
As I have mentioned to members in the past, I think it is absolutely imperative to see a pain management specialist. These doctors, on top of being on top of all of the laws of your state, they see you monthly to make certain that your organs are not being damaged. My doc does a calculation every time to include any new medicines to make certain they fall into a safe zone for my organs. I think this is why docs that don't specialize in pain mgt are afraid to prescribe. The laws are so strick now.
Just by 2 cents, but I think you should find a good pain doc.
Please let us know the outcome.