How best to work with a rheumatologist to resolve severe neck/upper back pain that's lasted for over two months?

October 23, 2008 10:05 AM

My fiancée has been experiencing severe upper back and neck pain for about the last two months. Our GP is finally going to refer her to a rheumatologist. How can we work best with the rheumatologist to diagnose and resolve this pain as quickly as possible? Way more details inside.

This is a follow-up to this question that I asked at the beginning of Sept. Since then, the hand/arm pain has been replaced with much more severe neck pain and her shoulder/upper back pain has also increased in severity. The back and left side of her neck, in addition to her left shoulder, are tremendously painful. It's not the shoulder joint though, it's around/under the shoulder blade itself.

The pain isn't constant, but it does occur every day and usually increases in severity later in the day. She is unable to sit, stand, work at the computer, walk or almost anything else for more than an hour or two without the pain becoming severe to the point that she can no longer continue whatever she was doing.

My fiancée is 23, in reasonably good health and has no family history of disorders anything like this. Aside from the pain, she doesn't have any other neurological symptoms, leading our GP to say MS was unlikely. She had an x-ray to check for Thoracic Outlet Syndrome, which the GP also ruled out. The GP did comment on a large amount of tension and spasm in my fiancée's neck and trapezius.

At the original appointment, the GP suggested going to physiotherapy. My fiancée did so in the middle of September. The physiotherapist thought T4 Syndrome might be the cause and cracked her back to correct it. He also applied electric muscle stimulation to her back and neck to help relieve the tension.

Afterward, my fiancée's neck was quite sore and then soreness soon turned into pain. She had three more sessions with the physiotherapist, this time insisting upon the gentlest treatments possible, and each time she still ended up with more pain than she began with. After the fourth session, she opted not to go back and just see if things improved on their own.

For a little while, they did. In early October, she was starting to feel better. There was still pain, but it was more isolated and manageable. On the weekend of Oct 13-14, we took a short 3 hour road trip to visit from friends in Seattle and while we were there, her left shoulder and neck started to hurt again. Since then, things are almost as bad as they've ever been.

She met with our GP again yesterday and the GP ordered c-spine and t-spine x-rays. My fiancée will go back to the GP at the beginning of November and if there isn't something very obvious on the x-rays, she'll be referred to a rheumatologist.

It seems to be that if this was just muscle tension/soreness, it would have at least improved somewhat my now. But the pain is so severe that it's significantly impairing her ability to live normally. Anyone experience something similar? Any ideas on what this might be or how to present it, so we can make our time with the rheumatologist as effective as possible.

Sorry for the long post, but I just wanted to give as much information as possible. It's tremendously frustrating for us, as we don't even know what the cause of the problem is or why it doesn't seem to be getting any better over two months. My fiancée and I just want her to be pain free again. Thanks!

posted by Nelsormensch to Health & Fitness (10 answers total)

Sorry. Long answer.

Hey there. I don't claim to be a professional of any sort, but I did suffer from severe back and knee pain for many years. I went to several doctors, but it wasn't until I saw a knee specialist that I discovered the root of all my pain issues -- Lack of flexibility in my hips and hamstrings --

As a child I played a lot of soccer and rode my bike everywhere, and in my adolescence I sat in front of a computer for most of my day, and I never stretched. I couldn't even sit at a 90 degree angle with my legs out in front of me without slouching my back. I had all types of back and neck pain, and my solution was to stretch and work out my back to make it stronger and more resilient. But the pain persisted, regardless.

Then, like I said, I went to a knee guy that knows my father. He did a full diagnostic, and basically told me my life story as described above, all without ever hearing a word from me. He told me that he saw it all the time.

Turns out, the neck, back, and hamstrings are all connected to each other like three bungee cords working in unison. Now imaging that the hamstring-cord is made of inelastic rope. The neck and back have to do all the extra bending and straining. By stretching my back to deal with the pain, I was actually enabling my hamstrings to remain inflexible, and keeping the day-to-day wear-and-tear of living on my neck and back. Being over flexible meant that my back lost a lot of power and control over its movements, and lead to multiple, frequent, minor injuries.

The doctor told me that I didn't need any surgery (yet) until I gave four months of flexibility training a try. My solution (and this may not be for you) was to start doing yoga. I did yoga two to four times a week, and I really focused on the hamstring stretches, but not all of them. Some of the seated forward bends are hard on the lower back, so I skipped those and just did supine hamstring stretch and pyramid stretch and pigeon pose. I also skipped ALL of the back bends (except for standing back bends), twists, and hard ab workouts (intense ab workouts are VERY hard on the back).

Within two months, my back, neck and knee pain was gone. Completely.

Give it a try. If you think that yoga is too spiritually charged and hokey, who cares? An hour a day with a couple of hippies (I personally like the meditation) is better than a life of pain, and it really helps to have an instructor to make sure you're doing the movements correctly to avoid hurting yourself. And who knows? Maybe you'll make a friend or two.

Good luck.
posted by lukeklein at 11:37 AM on October 23, 2008

I am not familiar with a rhuematologist but here is a resource from WedMD. Sounds to me like your fiance is suffering from chronic pain and you should see a chronic pain specialist. I am aware of many GP's not fully understanding chronic pain and outside of prescribing meds they really cannot help.
See a specialist.
posted by doorsfan at 11:48 AM on October 23, 2008

Rheumatologists are like detectives. Your fiancee will want to bring along a detailed medical history. A printed spreadsheet with dates and symptoms and treatments already tried would be great. The rheum doc will be interested in just about anything outside the norm. Pretty much nothing is too little to note. Be prepared for a long first appointment when he or she will take a very detailed history and work through some possible diagnoses and determine what further tests/labs are needed.
posted by sulaine at 12:19 PM on October 23, 2008

Dittoing lukeklein - I went about it a different way, but my pain started around age 25 and general doctors, physiotherapists, chiropractors, naturopaths... oh man I saw everyone and no one was much help - the "exercises" most of them give out as a matter of course actually made things worse. After doing more reading than you can imagine, I learned about the same things lukeklein said about muscles. I started on a VERY careful system of stretches aimed at protecting my muscles from more damage while working on their flexibility. Two years later, I have SIGNIFICANTLY reduced back pain and only have light flareups now when I'm a bad little twiki and don't actually do my daily stretches (kind of a light yoga/pilates type series of stretches - mefi-mail me if you want more info or book suggestions). It's amazing how much crap we do to our back muscles and how EASY it is to learn bad habits that take much longer to break.

Light, easy, gentle stretching that take on all muscle groups as well as learning to BREATHE and relax muscles against the pain response - rather than tightening up which is your first instinct - might be just what the back pain ordered. (I am not a doctor nor do I play one on TV.)
posted by twiki at 12:47 PM on October 23, 2008

I had all of that- plus paralyzing pain in my back and legs. It was keeping me from living a normal life. I did all of those things you mention. Went to every kind of doctor and therapist you can imagine. These doctors or therapists will only provide a placebo effect- temporary relief. Because they have no idea what's really causng the pain.


Please have him read The Divided Mind, by Dr. John Sarno.


Give it a shot and let the info sink in. Because this is not an immediate cure. He has to digest the information.

Once he understands why the pain is there and that he has to fight through it, the pain will eventually disappear. The pain will probably move to different location but as long as he understands why, the pain will eventually disappear.
posted by Zambrano at 12:53 PM on October 23, 2008

Seconding what sulaine said. Some of the details they will want to hear are already noted in your post, time of day of pain, when it got worse, better. Anything that occured around those times. Expand on those more and make sure to bring it with you. Also get family history/background if you haven't already. Rheumatologists are some of the smartest docs I've seen in my experience (e.g., chest pain in my case was really a pulled muscle in my neck, etc).
posted by ejaned8 at 12:59 PM on October 23, 2008

Rheumatologists are pretty much one of the last resorts when no other doctor can solve the problem.
But I want to caution you about something. Doctors are not perfect. My husband struggled with chronic back and leg pain for a couple of years. After an orthopedist found nothing on MRIs, and physical therapy was actually hurting him, my husband went to a neurologist who ran a battery of tests on him thinking it was nerve damage of some type. When he wasn't finding anything, and the meds weren't working to control the pain, I found a pain clinic. The anesthesiologist there took one look at the original MRI films, found the problem and alleviated it with a series of epidurals.
Sometimes it's the simplest thing that gets overlooked. I would also urge you to see if there is a pain management clinic in your area. They are often associated with hospitals. They can hopefully get her some relief.
posted by FergieBelle at 4:05 PM on October 23, 2008

I started getting similar symptoms in my early twenties and was sent to a Rheumatologist. I had seen one as a child for knee problems and was diagnosed with Juvenile Idiopathic Arthritis (Idiopathic meaning they don’t know what is causing it).

Like sulaine and ejaned8 mentioned, no symptom is too small. After seeing a few Rheumatologists I was diagnosed with Ankylosing Spondylitis. In addition to my neck, shoulder and back pain my current doctor used my childhood history of knee pain, chronic eye irritation and a tiny patch of skin that turned out to be minor psoriasis to come to a working theory on what was going on. He ordered some tests that previous doctors had skipped because of a few things I didn’t think were related.

I would also encourage your fiancée to follow up and research the diagnoses that the doctor gives. The first two Rheumatologists that I saw misdiagnosed me. One said I was getting older and had osteoarthritis (at 23) and the other said it was Fibromyalgia. Once I started doing some research it was clear that neither were my problem. Rheumatologic conditions and other musculoskeletal problems can be tricky and sometimes even good doctors miss things. My disease wasn’t thought to affect women very often in the past, which is why I think the previous doctors missed the mark. Research, Research, Research!

Good luck, I know how much chronic pain can suck the fun out of life.
posted by Lapin at 4:07 PM on October 23, 2008

I'm here to ditto that rheumatologists can be incredibly helpful, and even if they don't come up with an immediate diagnosis, can help ease her pain. For most auto-immune conditions, the threshold for diagnosis is 3 months of symptoms. Hopefully, she doesn't have one of those, but it is something to keep in mind. Based on her age and gender and that her pain is in her neck, they will probably be considering spondyloarthropathy.

In my own situation, the first rheumatologist I went to was not sympathetic, did not listen, and seemed to think I was either mentally ill or drug seeking. It was awful and demoralizing and it took me a couple months to try again. The second rheumatologist has been amazing, has taken care of me, has tried many different things to ease my pain. I don't know that I did anything different in my conversation with the two.

As others said, she should definitely come in with a written down list of symptoms and dates associated with them if possible. The physical exam may hurt a lot, and she should try to be clear in describing her pain (sharp, achey, etc) and what makes it worse or better.

It sounds like the physical therapist she went to previously kind of sucked. The rheumatologist will likely have a PT to which they refer people who will be better. For me, PT has been incredibly helpful at increasing my mobility and decreasing my pain while the diagnostic process has been ongoing.
posted by hydropsyche at 4:08 PM on October 23, 2008

Nthing sulaine and ejane; make sure she's prepared to spend a long time at the rheumy's office. Bring along as much medical history info as she can. When I had my first appointment with my rheumatologist, I started to think he was a doddering old man (he was in his early 70s, but had a stellar reputation and was on the advisory boards for both the American Lupus and Arthritis Foundations) because of the questions he asked me. I'd gone to see him for sudden and cripping joint pain in every joint in my body (woke up one AM and felt like every single joint was coated with hot acid), and he thought it was pertinent that 12 years prior I'd been to a dermatologist who'd commented that I had very dry skin for a person my age. Of course, I later found out that the dry skin (along with the joint pain) was a symptom of not only Lupus but also Sjogren's Syndrome (both of which we found out I have). Like the others said, the rheumatologist is sort of the Columbo of medicine; he'll ask about seemingly unrelated symptoms and previous history (Have you been camping lately? Does anyone in your family have an autoimmune disease? Has your dentist ever told you that you had an unusual amount of cavities? etc) and puts all the "clues" together. He'll also do a very thorough blood work-up, as well as X-rays, breathing tests and dexterity tests.
posted by Oriole Adams at 9:43 PM on October 23, 2008