Leg Pain and Swelling

 I'm writing for a family member who can't get a diagnosis.  Her G.P. suspects lupus based on lab results, but a rheumatologist is saying they don't think so.  Sometime prior to November of last year, she began losing weight for no reason.  To date, she has lost about 27 pounds and yet not a single doctor has seemed alarmed by this??   In late December she began getting a discomfort in her ankle.  This evolved into pain with swelling (pitted edema).  Over the course of the last six months, this has also moved into her right knee eventually involving that leg from the upper thigh to the foot.  The pain is unrelenting.  She has been to several specialists and is, as yet, undiagnosed.  I can be more specific as to tests, specialties, etc., but for right now I'm just trying to find someone somewhere who's had a similar experience.  I've searched the internet till my eyes are crossed and can't find anything exactly like what's going on with her.  I've even emailed a prominent clinic and didn't get anywhere with that either (they graciously replied, but didn't offer anything that hadn't already been looked into).  This is taking a terrible toll as the pain is 24/7.  Even worse, I think, is that she's on the brink of losing hope of ever getting an answer OR help.  If this sounds remotely familiar to anyone, please reply with ANY advice.  I accompanied her to still another appointment today and we got no help at all...again.  I had to order up a wheel chair to be brought to the car for her as taking any more than a few steps was out of the question.  I'll be anxiously awaiting a reply.  THANKS!

(edit:  Sister, I added your subject line to the post)

Post Edited By Moderator (hippimom2) : 6/7/2008 8:40:20 AM (GMT-6)

 When this first began in the left ankle, a chipped bone was suspected.  Then arthritis was considered.  Then it moved over into the other leg.  A few weeks ago a Doppler was done on the right leg, which is the most involved now, and that was negative.  What other testing might be done for vascular problems?  Thank you so much for your prayers, interest and kind words. 

DQueen, Thanks so much for your input. One of the specialists she has seen is a rheumatologist. Well, actually she was examined by a Nurse Practitioner who then brought in a couple of the doctors. Strangely, they told her she wasn't typical of someone with RA and/or lupus. She was then sent to an orthopedic surgeon who was openly perplexed by their referral. He in turn released her back to her G.P. The G.P. had never received (or misplaced) the lab reports from rheumatology, which only came to light when she happened to question some of the results that were out of normal range. Luckily she had her copies with her. In reviewing them, he and his NP felt that some of the tests, and about five of her symptoms, probably indicated lupus. He put her on prednisone and, sure enough, she got almost immediate relief (in about 24 hours) from the pain.....but then couldn't tolerate the side effects of the prednisone after a few days. He switched her to Plaquenil, but it's not helping. Tylenol III had helped some, but there were side effects with that as well after about five months and he switched her to the generic for percoset and it is also less effective. At my urging, she requested a return visit to rheumatology because it seemed they had surely overlooked something in her labs and that is where I took her yesterday. I had to request a wheel chair for her when we arrived...it has gotten that bad. That whole dismal experience is what brought me to this forum: Again she saw the NP and when we began asking totally reasonable questions, she got extremely defensive and stood her ground on this NOT being anything they can help her with. THREE times I very diplomatically asked where to go from here if that's the case. THREE times I got NO answer...except for some vague comment about going back to the orthopedic surgeon (HUH?). I saw no concern on her part when she saw that a wheel chair is now necessary and no empathy for this very chronic pain. I asked if a doctor would be coming in. Is it too bizarre to expect to see a doctor at a doctor's appointment?? She said there weren't any in the office and we did, in fact, meet one of them leaving as we went in. It was late afternoon on a Friday....what can I say? Pitiful. She did order some repeat tests, but still insisted that they would be unable to help unless some of those readings came back different or if something changed appearance-wise. For example, she's saying this can't be RA because there's no reddening of the joints...that kind of thing. Did you have any problems with swelling? Would really like to know if you are recognizing anything else familiar about this experience. Thanks!

Hi Sister . . . welcome to the forum. The prednisone is a great anti-inflammatory. That is why she got such good relief from it. So, wether the inflammation (swelling) is caused by lupus, RA, or an allergy (reaching here) . . . the pred gets rid of it. So she may want to rethink the prednisone as it sounds like that was actually helping. Yes . . . it does have side affects . . . but many still consider it a necessity to get the inflammation under control. The pain meds might help with the pain, but they won't address the cause of the pain. . . so that isn't a great solution either. You didn't mention what 5 lupus symptoms she had. There are a couple links at the end of my signature that may be helpful to you if you are trying to determine or rule out lupus. Try the "4 of 11" . . . it may help. This disease IS very difficult to diagnose and many people spend years and years trying to pin it down. If you are being blown off by the rhuemy . . .you might want to call your local chapter of the Lupus Foundation (link in my sig) and get a referral to a rheumatologist who specializes in lupus. You'll likely wait a couple months or longer for an appointment. . . but at least you'll be getting someone lined up. Sorry your friend is having so much trouble. But, as bad off as she is . . . the pred might be her best friend even in spite of the side affects. Blessings!

There is something called Complex Regional Pain Syndrome (or Dystrophy). What brought this to mind when reading your description is the condition began in 1 leg and then spread to the other leg: this is common in this rare and difficult to find a Specialist to assist with condition. Please look this up and if it seems to fit, do your best to search out a doctor familiar with treating it.

Best of luck~

Someone being in constant pain generally causes weight loss...the move from one limb to the other, the swelling, the need to use a wheelchair...all really stood out to me as sounding like CRPS. Many of the tests used to identify Lupus can be positive if there is inflammation in the body or for other illnesses.

I understand that insurance/money may be involved, but here is what i would do: I would go to the nearest most reputable University ER on a day that she is feeling especially bad.

Don't give up,

Hi Sister, Lupus is SUCH a huge topic that it is really hard to fit everyone in a familiar picture. Lupus can cause so many different issues that it makes it really hard to guess at. One thing that might really help, since she does have a positive ANA is to find out the "pattern". There is a post about that in "Lupus Resources" . . . link in my signature. That pattern can be suggestive of certain dx . . . but is not necessarily definitive. I should have mentioned above . . . that plaquenel can take a LONG time to build in your body. It's full affect can take 6 months. Thats why a doctor will treat with prednisone short term while the body builds the plaquenel. The prednisone is often strated high and tapered after a certain lessening of symptoms occurs. Hang in there!! It really can take a LONG time to get things figured out. Some these diseases overlap and she may actually have 2,3,4 different overlapping diseases. Some of the symptoms do sound like myositis (muscle wasting and weakness). Make sure she records ALL her symptoms so that she can bring a comprehensive list to her doctor visits. We tend to leave out things that seem small and these "little" symptoms can really help a good doctor figure things out. Sorry I can't be more help . . . but make sure to read the info in the "Lupus Resources" thread. There are some great suggestions there from the various members here. Blessings!

I'm readin' and sharin', guys. Thanks for all the suggestions. I've passed along the ANA pattern info and hope to look into that more as well as the Resources thread, in general, tomorrow.

DQueen, I didn't see your email with your profile, but I must confess that I was born blonde and maybe that's why I couldn't find it. ; ) I was able to see your general location and think it's safe to say there's a state between us. A day or two ago I emailed our Lupus Chapter for names of doctors, but would be interested in whether your doc would agree with whatever they say. May be a few days before I get a reply. Sounds like your experience has been similar to my sister's, but I'm wondering if your pain was wherever the swelling was or could you have one without the other? Hers seems to go hand-in-hand.

What's everyone's concensus about lupus running in families? I've gotten mixed reviews on that when I've read about it, but it seems like environmental causes outweigh genetics...well, in as much as they know anyway. We can't think of any relatives who've had it.

Rosie, been meaning to say I like the closing to your posts and that I read Ps. 139. the first time I saw it included in your signature.

Sweet dreams...or Good Day...to everyone, whichever the case may be when you see this.

Hey Sister, *smiling* Psalms 139 is my favorite and has been a comfort many times. It seems to take on more meaning each time I read it . . . I'm glad you enjoyed my sig. I really enjoyed looking at everyone's little messages when I was first reading here (still do!!) . . . the little snippets help me to adjust my attitude sometimes. Just what the doctor ordered!! Some really great mentors here. I think the biggest thing I learned, reading here, is that attitude is everything when you are dealing with a chronic illness. Sometimes it is all we have control over. :) I agree with Judy . . . your friend is truly blessed to have you looking out for her!! You might enjoy reading "The Spoon Theory". It is at www.butyoudontlooksick.com . . . and it attempts to explain a day in the life of a person in a lupus flare. But . . I have a feeling your don't really need the "word picture" that it gives. Blessings!

Judy - I passed along (via email) your message of reinforcement about staying with the prednisone. When I spoke with her today, I reiterated. She was planning to call her G.P. and get his ok...well, probably more like TELL him. Even THAT is an ordeal for her--we both hate wandering through the annoying automated system mazes and I think they should be banned from medical facilities. But, due to privacy matters, I can't help her with that.

Rosie - I did read "The Spoon Theory" and it moved me in more ways than you could know...unless you have a special power of discernment?? Anyway...I sent her the link for it, but until she feels better I tried to convey it to her verbally today. It's an amazingly succinct analogy!

DQ - I'll take a tropical blizzard, please. Oh. No. Sorry. Just me daydreaming about lots of calories. ; ) Seriously...I will jot you an email in a few and will put Lupus Forum in the subject line so that if you have a spam filter on you can easily check for it in that folder. I'll try to remember to flag it as high priority also.

Blessings to everyone whose eyes fall on these words. You can't be here for any good reason.