View Full Version : Please! Help me help my wife!

10-30-2005, 07:46 AM
My wife has been suffering from inflammation and muscle pain for 2 - 3 years. Sometimes when I rub her neck it is so knotted up it is unbelievable.

This pain moves from neck to knee to hip and occasionally to her ankle.

Sometimes she just describes it as pain...not necessarily muscle pain.

She had a case of anemia probably 15 years ago that the doctors never understood.

In these past few years the pain has become unbearable at times. She has always worked but is having to cut back further and further. She also has to sleep all weekend just to feel "decent" by Monday.

She has been in tears from fatigue. She has been in tears from pain. It wakes her up sometimes. She can't sleep right.

The knotted muscles around her neck are almost like a yoke in their placement. It is not just the back of her neck and her shoulders like stress can do.

The doctors blow her off repeatedly.

Right now she is seeing a rheaumatoligist who spent 2 hours with her and decided that from her remaining stregth and small amount of joint pain that she has "soft tissue disease". Which soft tissue disease? What is it's name?

Did he rule out lupus because she has no rashes?

Please tell me what you think. Do you think he is correct?

He is treating her with oral steroids, but yesterday her pain in her hips and knees were debilitating. (She is only on her 2nd day of steroids)

She has no mouth lesions, and no skin rashes that we know of.



10-30-2005, 11:15 AM
osage, you're a wonderful person, thank you for being so supportive of your wife.

Pain is fatiguing in and of itself. Unremitting pain feeds on itself, in a way. you tighten up because of the pain, and the tightened muscles bring more pain. Horrid circle. Sometimes massage can help - if you have a massage therapist near you, suggest to your wife to visit - ask for a theraputic massage, not deep tissue as that will cause greater pain for someone with any rheumatoid condition.

None of us here can diagnose. The diagnosis of lupus is made based on many factors - a lot revolving around various blood tests. There are other conditions that have similar pain but different causes. THe soft tissue disease is one I don't know much about. Have you looked at WebMD? It is always a good source, or visit nih.org, the National Institute of Health.

Suggest to your wife that she write down all her questions before her next doctor visit, take the list with her. it will help her remember all she wants to ask.

A gentle hug for both you and your wife...

10-31-2005, 07:33 AM
Hi Osage :-)

Soft tissue diseases are rheumatic syndromes that affect the tissues and the structure that surrounds a joint producing pain, swelling and inflammation. It is caused by overuse or injury of joint or muscle, improper body posture, or abnormal bone or muscle structures, and may occur in association with other diseases or conditions, like rheumatoid arthritis, gout, psoriasis, thyroid disease or an unusual drug reaction. Because these structures are near joints, pain in these areas may be mistaken for arthritis. The difference is that arthritis means inflammation in the joint itself, not in the structures around the joint. Soft tissue rheumatic syndromes may affect the areas around the shoulders, elbows, wrists, fingers, hips, back, knees, ankles and feet.
Soft tissue syndromes- like tendinitis and bursitis- are very common in people who are otherwise healthy. Many of the syndromes go away on their own over time. In most cases, a primary-care physician can treat soft tissue rheumatic conditions. Some people may need to be referred to a rheumatologist, an orthopaedic surgeon or a physical therapist for treatment.

Lupus is considered a multisystem, chronic inflammatory connective tissue disease. Connective tissue diseases are disorders featuring abnormalities involving the collagen and elastin. Connective tissue diseases are often characterized by a variety of immune abnormalities that are common for each particular type of illness. The connective tissues are composed of two major structural molecules, collagen and elastin. There are many different collagen proteins that vary in amount in each tissue of the body. Elastin is another protein that has the capability of stretching and returning to original length like a spring. Elastin is the major component of ligaments (tissues which attach bone to bone). The connective tissue diseases have a pattern of organ involvement that overlaps and often makes specific diagnosis difficult.

I would not say that your doctor has ruled out anything at this point. He may want to run further tests on your wife before he gives a final diagnosis. If not, I would suggest that you insist that further tests be run so that you both can know exactly what is causing her pain and fatigue and so that treatment can begin as soon as possible.
I wish you both the very best and please let us know how you and your wife are progressing.

Peace and Blessings

11-05-2005, 05:11 PM
I can not tell you how mad I get at our family doctor for belittling my wife.

Their should be some way a patient could have an advocate that put pressure on doctors to hold to their oath and be patient and kind as best they can.

Her rheumatologist is treating her respectfully but I am convinced that he does not care if she hurts for 3 MORE years or 3 seconds...as long as he gets paid.
They never act until goaded, even on simple things like calling about test results.
I would get fired if I waited weeks to do my job...especially if I did it rudely, and woke up thinking I was God.

Anyway I am curious about a few things you mentioned.
My wife has had psoriasis all her life.
Her dad had it.
She can control hers with a little sun and topical prescriptions when it first appears.
I DID NOT know that she might be more liable towards soft tissue disease because of this connection.
Also, she has incorrect alignment of her neck vertebrae and they don't know if her inflammed muscles are pulling on her neck or if the neck is affecting the muscles.
Her neck is bending towards the wrong direction.
Some doctors say it is "nothing".
The rheumatoligist thinks it needs fixed.

One of them wants to give her some kind of shot this Monday...I wonder if it will hurt her more than it helps.

Thanks again and please respond if you have any more info or thoughts.

I appreciate ALL of the replies.
I spent 1/2 hour rubbing my wifes neck a few hours ago because she was crying in pain. She is done with oral steroids and still hurts terribly.

I think she is cracking emotionally and it gets hard to make any sense of anything when she can't relate it to me rationally...as far as:
the order of events
what hurts right now
which doctor said what
her anger at the lack of concern is expressed towards me instead of the doctors who scorn her
mood swings (I guess from steroids)

Thanks again,

11-06-2005, 11:06 AM
I commend you for recognizing that her anger is not with you. The illness itself can cause mood swings and the steroids can cause mood swings. Being in constant pain can certainly cause extreme mood swings. I know that your efforts to help her mean that you need her to be able to answer questions, but sometimes, for us sufferers, that is the most difficult thing for us to do. Primarily because we cannot explain the pain, we cannot explain the fatigue and, if we are not getting what we need from our doctors, we cannot tell you who said what because no one is really saying anything. She is hurting, she is frustrated, she is scared and she is angry (and rightfully so).
I advocate that we, as patients, be our own advocates. Sometimes our anger helps us to do this. You and your wife have a right to demand that your doctors take her seriously, treat her respectfully and take the time to answer your questions. I usually prepare a list of questions and concerns prior to my doctor's appointment and I INSIST that my doctor address each issue before I leave. I also find that what you are doing (educating yourself about the illness, its symptoms and treatments) is generally appreciated by doctors. They are more willing to talk with you about your concerns when they realize that you know what you are talking about and you are asking educated questions! You sound as if you are being a wonderful advocate for her - keep up the good work!!!!
Muscle pain and inflammation are a common symptom of lupus. There are several reasons why we experience muscle pain and inflammation. Here is a web site that gives explanations for those reasons:
Perhaps after reading this, you may be able to have better information to give to her doctor in order to ask him about her neck pain and alignment.

I wish you and your wife the very best!
Peace and Blessings

11-17-2005, 03:01 PM
First off, thanks for all the replies.
My wife may not even have lupus and yet you folks who are much sicker are willing to help. That is great.

I agree with being your own advocate. I also wish there was an advocate with clout. Someone who made doctors feel like paying attention.
I can not believe how some doctors, even young ones, treat women...still!

My wifes rheaumatologist now says he is "not sure" if she has lupus, soft tissue disease, or exactly what...I am glad to hear him admit he does not know for sure.

The discovery of her disease was because of investigating pain from a bulging disc in her neck. But as they tested they found she has pain that does not come from that and her ANA tests were positive.

Her pain moves around and is located "around" joint areas, or not as it moves from knee to neck to back to ankle, etc. Because of her bulging disc AND her lupus-like symptoms they wanted to give her a epidural steroid shot.

They gave the shot and for about 5 days she was miserable!
Then a knot raised up in the area in which the shot was given.
On about the 6th or 7th day she started feeling better and the inflammation from the actual puncture left.
She is better but not good...but we will take what we can get!

I do very sincerely hope for the best for all of you.
I have 2 acquaintenances who both lost their wives this week. One was in his twenties and one around 50. Both women were young and not sick at all.
These 2 guys were just blindsided.

So I always know there are folks with worse situations.
I appreciate your help and solid info.


11-27-2005, 02:44 PM
Just wanted to share... I have been drinking aloe vera juice for 2 months now and it has GREATLY helped my joint pain and swelling. I just drink 2 ounces a day... My father who started having arthritis symptoms has also been drinking it and all of his has disappeared. I was told about aloe vera juice by a customer of mine who was taking it for her arthritis. It has worked wonders!! I'm even off my plaquenil!

Good luck to you both! Keep smiling. :)

God Bless

12-09-2005, 10:54 PM
Osage...you are a wonderful person and remind me a lot of my boyfriend!!!

I have decided that there are plenty of doctors out there, and by golly if I'm going to give them my blood, urine, and time, that they need to earn the right to "treat me"!!!

I feel very fortunate that I have such a wonderful group of doctors currently, but it took me 10 years to get there. The only advice I can give you is don't give up or loose hope!!! Treat each doctors visit as if it is an episode of 'Survivor"!!! I personally have voted many doctors off the island and now have a great bunch of people that put up with me!!! If I found so many good doctors in my little state of Nebraska...I believe in my heart that you will find the right doctor for your wife!!!

Keep your chin up, and thank you for being you!!!