View Full Version : new frustrated member

01-13-2008, 09:41 AM
I'm a 37 yreas old female. I was diagnosised with lupus about 15 months ago. My doc keeps telling me "you'll be ok" That's easy for him to say. I must admit though, after reading some of the other posts I'm probably doing better than some but I'm still having a hard time. I've been on prednizone from the start which my rheumy wants me to get off of but I don't feel he's giving me any other options to control my pain. About my rheumy, has anyone had your doc tell you that they thought "suffering was a good thing" and that they are ok with you having some pain??? Mine did and that statement has made me think maybe it's time to try a different doc. Anyway, I'm on plaquenill also but not sure that's helping much. I've had pain since september when the weather changed. Summer months seem to be my best (living in WA state, there's not much summer months though) and fatique can be quite a challenge. Does anyone have any info on alternative medicine? I've recently started accupunture and I take a whole handful of suppliments (not herbal) that I almost think help me just as much as the prescriptions. Well, enough of my babbling. Just nice to have someone out there going through the same thing for support. Thanks for any info!

Terri :mad:

01-13-2008, 10:34 AM
Hi tlarmstrong2; :lol:
Welcome to our family. I am sorry that you are having such difficulties and that you seem to be saddled with a thoughtless doctor. Yes, it might be a good idea to find a new doctor. Obviously, this one has never suffered a day in his life and has no idea how we have to deal with pain 24 hours/day..seven days/week. Our pain never goes away, it just changes to some other body part, some other organ or goes from bad to excruciating!! No one should have to suffer with pain; it does not build character, it does not make you stronger, it merely makes you suffer!
Prednisone is not so much a pain reliever as it is an immunosuppressant. In Lupus, the immune system produces antibodies against our otherwise healthy tissues (in essence, the antibodies attack our healthy tissues). These antibodies become overactive and cause undesirable effects, the primary one being inflammation in our tissues and our organs. Prednisone works to suppress these overactive antibodies, which in turn reduces inflammation which, hopefully, eases some of the pain. This process takes a while. Most doctors will prescribe medication specfically for pain so that we do not have to continue to suffer while waiting for our medication to take effect. One of the most important aspects of treating Lupus is to try to get our pain under control. We must do much more than just taking one pain pill, or even a couple of pain pills in a day. Our pain management is prescribed to break our body's cycle of pain. To do that, we usually need to go on a full 24 hours of intensive pain medication, followed by another two days of milder pain medication. Sometimes eliminating that pain is not possible with just one dose of medication, especially if you have been in pain for several days, or weeks. The body has trained itself to be in constant pain. The muscles now think that to be in pain is normal.
So .. you need to break the cycle. By taking pain medication on a strict time schedule for at least 3 days, EVEN if the pain goes away by the end of the first day, you can break this cycle of everyday pain. Granted, you may not get rid of all of the pain, but at least the pain will be reduced to a manageable level.
The most common pain medications are NSAIDs (non-steroidal anti-inflammatory drugs), such as Ibuprofen (Advil, Motrin, Nuprin, Nurofen or Rafen) or Acetaminophen (Tylenol, Panadol, Actimol, and Atasol). If these do not work effectively on pain, we are often prescribed medications such as Fentanyl Transdermal (Otherwise known as the Duragesic patch, a narcotic analgesic), Hydromorphone (Dilaudid, as it's commonly called), Meperidine (Demerol), or Oxycodone (Also known as OxyContin).
There are many other medications that are used for chronic pain management. These include Darvon, Nubain, Talwin and many others too numerous to mention in this post. The point is, there are other options besides "toughing it out" when it comes to pain management. Suffering with chronic pain is NOT necessary. It doesn't make you a better person, it doesn't mean that you're stronger than a person who takes pain medication, and it doesn't really make any sense at all for anyone, especially a doctor, to suggest that pain is good for you.
When our pain is under control, we're happier, more able to cope, more competent and more productive. Unnecessary suffering should be avoided as a waste of our energy. Find a new doctor, talk to that doctor about prescribing something to manage your pain, and don't be afraid to speak up for yourself and demand that you be treated for you pain and any other symptoms that you may have.
Pain relief shouldn't be considered a luxury. It's your right!

Keep Us Posted..
Peace and Blessings

Prednisone is often given with Plaquenil.

01-13-2008, 12:36 PM

Our wonderful Saysusie has given you some great info. I won't repeat anything, but want to say that my mouth dropped open when you said
About my rheumy, has anyone had your doc tell you that they thought "suffering was a good thing" and that they are ok with you having some pain???
I'm not known to put up with fools, and I'd have switched doctors before he left the office for the day. But that's me.... I"m also surprised that he has you on prednisone but not on plaquenil - I considered that a miracle drug - it made a difference in pain and fatigue once it kicked in (takes a couple months).

I've learned that pain is exhausting. I have much more energy when I'm not in pain. In addition to NSAIDS, which Saysusie covered, one thing that works very well for me is massage therapy. With lupus, we don't want to go to someone who does sports or shiatsu (sp?) massage - the deep tissue stirs up too many toxins, and actually ends up hurting worse. Theraputic massage, a little lighter touch, is good.

The non-traditional means I use to treat pain and fatigue include (with my doc's OK) 2 tablespoons of ground flax with a teaspoon each of ginger, turmeric and cocoa mixed in. Ginger is good for the stomach and somehwat antiinflamatory, turmeric is very much an antiinflamatory, and cocoa is full of antioxidants. Flax is good all 'round. Takes some getting used to taste-wise, but I find it only takes skipping 2 or 3 days to wake up in pain...

Light exercise. Some days I can do eliptical, treadmill, and even some weights. Other days it is all I can do to sit on a recumbent bicycle or walk 2 miles an hour on the treadmill. Movement helps keep joints loosened, helps with fatigue and lowers pain a bit.

Also - pampering with a long hot bath. Of course lots of bubbles, a magazine and a tall cool (non-alcaholic) drink.

I hope your difficulties lessen, and that you become an active part of our circle of support, shared knowledge, and laughter.

01-14-2008, 09:20 PM
Thank you both for the support and informatoin. I've been very frustrated about all this and nobdy near me has been through anything remotely similar. They try to be very understanding but don't really get it at all. At this point I'm able to conceal my pain so it really suprises my co-workers when I tell them how I really feel. It's really weighing heavy on my mind, very emotional and it's just plain exhausting! Not to mention it just feaks my husband out so we rarely talk about it. But I will have a very frank discussion with my doc and if I don't get any better responses from him then I'm off to another office.

I do keep up with exercise, I have a fairly physical job which I enjoy and do take other suppliments that are good anti-inflammatories. And finally, I absolutely could not be without my hot tub!

Thank you again! Terri

01-16-2008, 07:38 PM

Nice to meet you!! I'm 37 also. I live in NY. I'm a Single mom of 3. :D

I found that plaquenil helped me quite a bit; It took about 3 months to kick in. I took it for quite awhile. Of course when I felt better for a about 6 months, I got lazy and stopped taking it. I flared about 2 months later.. worse than I was to start. :evil:

If you take plaquenil, be sure to continue it as prescribed. I think I have finally found my bad times of the year. I take it twice a day during that time(late fall- before the holidays), and most of the other times, one time a day. At one point (this past summer), I was taking it every other day, but I started to forget to take it and flared again... about two months later.

I hope you start to feel better soon!!



sick n tired
01-17-2008, 12:08 AM
Hi Terri,

I totally agree with hatlady. Dump the loser doc. I did just that when mine told me that he liked to refer to fibromyalgia(one of my illnesses) as "crazy womans disease". I took all of the bloodwork and xrays then left and found someone else. You have dignity. My mom is a nurse and she has always said that all doctors should have to be in pain from something like surgery or chrinic pain illness and then they would be able to show more compassion.

I was on prednisone at first and then the doc put me on plaquenil. It was starting to help but I have been taken off for a week. I hope that doesn't set me back too far.

Welcome to the family

In Him,


01-17-2008, 11:07 AM
You are from WA state - me, too! And I, too, and new to this forum. I went through 2 rheumys before finding my current one. He is awesome. Always willing to listen to me, never thinks I am a "crazy woman." This is what everyone deserves! There is little enough they can do to help us, we should at least have their compassion. I am with the others - you need another doc. There are many approaches to pain relief - accupuncture can be good for some people. I used to go all the time for the horrendous cramping of my Crohn's disease, and it always soothed the pain. Accupuncture has not helped with the muscle and join pain of Lupus, but I may not have given it enough faith and time. While waiting for the Plaquenil to take effect, they should consider some kind of pain medication. No one should be left to suffer. There are multitudes of pain medications, as I read SaySusie spell out in another forum, and one might be right for you. Keep us informed on your progress!