I called my Rheum last Friday and Neuro on Monday. NO RETURN CALLS! I am done being patient. I have never been one of those patients to call the office a lot. But tomorrow I will be calling until I get a call back and either answers or an appointment quicker than Oct 28.
I am in pain and this is a new symptom for me. They need to address it.

I agree. I would be calling and raising “H—”. Probably your doctor doesn’t even know you called. Bet it got stuck on the receptionist 's desk.

We are our own best advocates...keep calling until you get what you need! I hope they get you in much faster and are able to decrease your pain levels ASAP. Gentle Hugs to you.

Be persistent, I have had to do that a couple of times. Sometimes I think they do that to see how much pain you are really in. Or if you are really an urgent case. You are the only one that can tell them what you need and what is going on. Call back! I know it is a pain, and not fair but you have to! Good luck!

All I can say is Amen sister!

AMEN! Do all you can to get through to them! I don't put up with BS anymore!


The squeaky wheel gets the oil. I have been known to be the squeaky wheel in many situations. Those “gate keepers” screen everything until you persist. Lyn is probably correct is saying that your doc is probably unaware that you are even trying to get in touch with him. Half the time the message doesn’t get through. We have to be our own best advocates. We learn this the hard way.

I have seen so many receptionist situations that are very disturbing. They think they know what they are doing but really mess things up for the patient. Keep calling till you are heard and they respond. Several times we have had to talk to the dr about front desk problems. One dr even gave her cell number to us. Hope you get it all straightened out.

Inform the doctor about this problem. She may know but at least you make sure that she knows. My rheumy I won't even bother anymore. No matter what they tell me to go somewhere else for whatever the issue is. All she does is bloodwork and tell me to see her in 3 months. Acute flare that I am in I am handling on my own and contacting pain management on Monday. Rheumys suck! Of course that is only my experience. Good luck!

lone wolf, I agree with you in principle and I would like to be able to afford more natural ways of helping me. Truthfully, I have Rx coverage and I can't afford much alternative drugs or specialists in holistic medicine. Also, my mind is really affected by the lupus and some days I can not absorb anything nor does it retain much either. I truly love to read your posts and others here who are able to study and figure this out. Thank you always for sharing your way of healing yourself. I for one love to hear about this way. Gentle hugs

I have a friend that is very knowledgeable about these things and in fact owns a store that sells natural supplements, etc.

I have tried things that she has recommended and some I reacted negatively to them. I bought one thing called Anti Flam and OMG I got really, really bad so I stopped taking it and a couple of days later I was okay. I don't have the guts to go off most things and go all natural.

I would be surprised if this group reacted negative about anything. I have never been on such an understanding and tolerant group. Keep talking lone wolf. Even if I can't do it I am very happy for those of you who do.

Absolutely, call your doctor again. Tell them this is a new symptom and if the doctor does not want to see you, then you will see the doc at the ER. That should get their attn. Depending on where the pain is it could be something quite serious. An all over general achiness however, I am sorry to say, comes with the territory. But, any pain in the back, chest, head, abdomen need to be addressed sooner rather than later as our organs can be compromised very rapidly.

I am not a doc, of course, but looking through the responses I know that I have one of the best Rheumy docs out there. And while less is known about lupus than other diseases Rheumies treat, some have become quite proficient in tx of it. I have found that having a team that has worked together to be so very helpful, so asked my PCP who the best Rheumy in town for treating lupus specifically is and that is who I see. She is always there to answer questions, so when I see specific questions on this site, I go right to the source and ask her and try to share the answers she gives me here. Unfortunately, you may have to call quite a bit in the beginning as your doc is just learning about you as you are learning about this disease. After a year, my doc will call me on the carpet if she thinks I have missed taking my meds or something because it affects my CNS so badly that I can't complete a sentence. I know many things that I have done outside of just taking medicine has helped, such as diet changes, relaxation, aromatherapy, etc. My PCP treats many performers and athletes so is very helpful on lifestyle changes I have made and they dovetail nicely with what my Rheumy and Nephro have me doing.

Hope you feel better soon,


Hay!! Keep calling! That is what I do-when in the pain you only want relief, I know ! Just keep calling until you get someone to answer -or if it is not far go as walk in and start crying, I bet that will get them to do something!!..Beverly l.