Leg Pain and Swelling

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Sister Sister
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Date Joined Jun 2008
Total Posts : 46
   Posted 6/6/2008 8:40 PM (GMT -7)   
 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?? confused   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)


Lindaloo
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Date Joined Sep 2006
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   Posted 6/6/2008 11:28 PM (GMT -7)   
Have they checked her out for a vascular problem? Sometimes that can affect the whole limb and cause horrific pain. What tests did they do if any, for vasular problems??

I will pray for your family member that she will find an answer and that she will keep her spirits up. I know how hard this is, especially when you are in pain around the clock, as you say she is. Poor poor lady. I feel so badly for her.

God bless.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 6/7/2008 2:22 AM (GMT -7)   
 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
Regular Member


Date Joined Jun 2008
Total Posts : 88
   Posted 6/7/2008 6:27 AM (GMT -7)   
I have had a similar experience. When I was in high school, I was in so much pain, and all of my tests pretty much contradicted each other. My rheumatologist finally decided that I had lupus and rheumatoid arthritis. Sometimes it takes awhile to get a diagnosis for lupus. I guess it is hard to pinpoint, especially when combined with symptoms from other problems. It's a tricky disease. The only advice I can give you is to demand that tests be done more than once, and ask for a second opinion. Your sister deserves to feel better and there is a doctor somewhere out there that can help her. Have you considered taking her to the Mayo Clinic? Good luck!
Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 6/7/2008 7:30 AM (GMT -7)   
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!

hippimom2
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Date Joined Jul 2005
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   Posted 6/7/2008 7:31 AM (GMT -7)   
I'm sorry your friend is going through so much pain and not getting answers. Some of us have had to go through several rheumatologists to find one that would really listen and take time to look at everything and not just labs. These connective tissue diseases are very rarely clear cut and can be so tricky to diagnose. Tell your friend not to lose hope - she will find a doc who will be able to put all the pieces of the puzzle together.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 6/8/2008 10:31 AM (GMT -7)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 6/9/2008 4:04 AM (GMT -7)   
Thanks to HippiMom and AlwaysRosie for your input and encouragement. : )

It confounds me that doctors go to school for all those years and then, when it comes to something like this, so many of them don't seem to accept that not every patient will fit an exact criteria.

Being the "middle man" posting on this forum on behalf of my sister poses the risk of me inadvertently confusing some info and I think I may have done exactly that when I said "some of the tests, and about five of her symptoms, probably indicated lupus". I think I should have said "some of the symptoms and about five of the tests." One of those tests was a positive ANA. Her predominant symptoms have been the pain and swelling, along with unexplained weight loss (at least 27 lbs.) and loss of appetite.

It's my impression that, in large part, it's the appearance and extent of her edema that's not fitting the bill for the rheumatologist. There is no redness or warmth and the right leg is almost entirely involved--going from mid-thigh down to the toes--not being limited to the joint areas. The area just above the knee is about 3" larger than the other leg. The swelling in the left leg, where this all started, is mostly from about mid-calf to toes. Is that sounding typical...or not?

And with the Prednisone (started at 60mg), the most problematic side effect was a really bad, constant headache. I believe she described it as a throbbing headache, but will have to ask to be certain. Again...anyone else?

As always...THANKS

djoyg
Regular Member


Date Joined Jul 2006
Total Posts : 139
   Posted 6/9/2008 4:52 AM (GMT -7)   
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~
d.


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 6/9/2008 5:32 AM (GMT -7)   
djoyg - So, did this case not sound at all like lupus to you, or you're just thinking this is just another avenue to explore? I have found some info on CRPS and am passing it along to my sister. As with seemingly everything, some of it seems to fit....and, yet, some not.

These, yes:
Joint stiffness, swelling and damage. [Not sure about any damage]
Muscle spasms, weakness and loss (atrophy). [Spasms, but not sure about any atrophy]
Decreased ability to move the affected body part. [Definitely!]

Maybe, on the shiny part:
Skin may become tender, thin or shiny in the affected area. [No tenderness to touch]


These, no:
Skin sensitivity.
Changes in skin temperature, color. At times your skin may be sweaty; at other times it may be cold. Skin color can range from white and mottled to red or blue.
Changes in hair and nail growth.

I'm posting the yes-nos-and maybes for others to see, consider and perhaps comment on.

Oh, my, how can this ever get resolved??

Much thanks!

djoyg
Regular Member


Date Joined Jul 2006
Total Posts : 139
   Posted 6/9/2008 1:40 PM (GMT -7)   
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,
d.


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 6/9/2008 5:16 PM (GMT -7)   
I gave her that very same advice and she went to a university hospital about thirty miles from where we live on Feb. 28th, after having no luck with anyone locally. They aspirated her foot in two places (YIKES) and did other testing. She was on morphine overnight. They were very kind and concerned. The plan was to have the tests back for a doctor to review the next morning. Tests were not completed yet. They dismissed her with a referral to an orthopedic guy in their clinic (this was still only in the first ankle at that time). His office refused the referral--said her case didn't meet his criteria (??). This led to a referral to their sports medicine dept. and a negative MRI in March. It then began to cross over to the other leg. In the meantime, she found out she's hypothyroid in April (is also diabetic and I have posted most of this at that forum also). Mid-April is when she linked up with Rheumatology, also at the Univ. clinic, via a referral. THEY referred her back to the original doctor that denied the first referral by the ER. I think he was supposed to check her for Charcot. Negative again. HE referred her...back to her G.P. the week of 5/4. Distal pulse was abnormal in rt. leg. Doppler from groin to ankle was negative. On about 5/9 she had to resort to using a cane. May 15th her G.P. and Nurse Practitioner saw her copies of tests done by rheumatology and felt lupus was likely. I think anything I've omitted has appeared in my earlier posts here. She did further explain something else to me today and that is that touching her, even as much as for an exam, doesn't really cause any increase in what pain she already has. But she is short and if her feet ever have to dangle from a seat or if she's jostled, it really sets it off. Also if she has to be up and about, like on days of doctor visits, the repurcussions are pretty rough that evening and the following day or two. I have no idea if this will relate to anyone who might read it, but thought I'd throw it in. Who can ever know what seemingly small detail might turn out to be really significant. Thanks so much for everything...

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 6/9/2008 6:30 PM (GMT -7)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 88
   Posted 6/10/2008 3:03 PM (GMT -7)   
Hey SisterSister. I too was, at one point in time, ready for a wheel chair, and barely able to walk. I had a lot of swelling, just about anywhere you can think of. It sounds like you guys are having a very tough time. I was lucky enough to find a wonderful and very thorough rheumy. If you would feel comfortable e-mailing me and letting me know what area of the country you are in, I may be able to help you find a good rheumy. Mine is actually nationally known and may be able to reccomend somebody, or if you are close enough, she may be able to go to him.  Remember don't put your personal info on the forum, but you can find my e-mail if you click on my profile.
Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 6/10/2008 7:25 PM (GMT -7)   
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.

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 6/10/2008 7:52 PM (GMT -7)   
Sister, Sister,
I just wanted to say, you are such a special person to take on the burden of your friend's care! God Bless you for your effort. Everyone needs someone like you. You are also very articulate. You have received some very good advice. Don't give up! Iwanted to echo Rosie on the prednisone issue. It's a battle that we all have at some point or the other. I've been on up to 120mg a day. It's rough, but there are points that I can't do without it! It relieves the pain like nothing else, including pain meds. She may need to reconsider. It's definately not pleasant, but sometimes it makes life tolerable and keeps us functionsl! Either way, your friend will be in our prayers. God Bless, Judy

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/10/2008 8:36 PM (GMT -7)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 88
   Posted 6/11/2008 11:06 AM (GMT -7)   
Sorry about that! I was also born a blonde! lol! You should be able to see it now though. Anyway, I can have one without the other, but it changes all the time. No two days are alike! Oh, and by the way, my paternal grampa had lupus, and someone on my mother's side did too (a more distant relative).
Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 6/11/2008 2:21 PM (GMT -7)   
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.
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