Discussions By Condition: I cannot get a diagnosis.

3 years, countless Dr's, no clue....help!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • January 25, 2009
  • 11:25 PM

I am a 39yo Female, good overall health. 3 years ago, I began to suffer from upper back, shoulder, neck and head pain. I saw several doctors, have had MRI's, xrays and many attempts at physical therapy with no help.

The pain began between my shoulderblades, and was initally diagnosed with myofascial pain syndrome. That pain has moved and migrated some, settling mostly in my neck, and trapezius muscles. Now, If I do not treat the pain with codein or lortab, I will end up with a migraine. NSAIDs do not help. I have had many injections including trigger point injections, cervical and sub obcipital nerve injections. I had a couple migrains as a teenager, but none in my 20s-30's until this problem. The pain comes and goes, often different within any given day, some days with little pain, and several "flare-ups" each month. At its worst, I had constant pain and migraines every few days.

During this 3 years, I have stopped working, became pregnant (for the first time), had a baby, and am still breastfeeding. The pain was fairly consistant thoughout my pregnancy, with slight improvement during the last trimester. My only obvious change then was sleeping duration and position. We have tried new beds, pillows, exercises, stretching, massage. I have not taken any migraine prevention medications due to breastfeeding. I take Axert or imotrex for migraine's when they occur. I take Tylenol 3 as needed, often about 1 per day, except during severe flair-ups when I may take 3-4 in a day for 1-2 days. I had a migraine lately that did not respond to the imotrex, so I took lortab. I take Ibuprofen for general aches and pains, as needed.

I saw a rhumatologist early on, who did not think RA or lupus was likely. I do not have pain on my limbs.

Other things that have been going on, whether related or not I dont know...I have suffered some hearing loss, which one visit with a ENT said was probably just genetic. I have recently developed a whistling in one of my ears, which I have not yet had checked out.

I dont smoke, drink infrequently, take any other medications other than the above.

I have always been a strong, active person, with no psych problems, no particular stress, and a great husband and baby.

WHAT IS GOING ON????? The pain takes about 7 days a month out. The rest of the time, I am partially functioning most of the time. I cannot do many activities that use my upper body because it will sometimes cause a flair-up. I want my body back.

Helllpppppp.
Thanks!

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6 Replies:

  • Anyone have any ideas?
    Anonymous 42789 Replies
    • February 1, 2009
    • 08:18 PM
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  • I had myofascial pain too. My suggestions:1. Own the problem - no excuses.2. See either a phyisical therapist or deep tissue massage therapist who will get their knuckles deep down into your sore muscles.3. As long as there is no HARM in the therapy being provided, you may HURT from the therapist pushing their thumbs into your pain spots.4. Without exception, do all of the exercises they give you.5. Even if the pain they give you seems intolerable at the start, you must let them do their work and build up to more and more pressure.It will get better - unless for some reason you sabotage your own recovery, but that's another story.
    Donlakyounomoah 1 Replies
    • February 1, 2009
    • 09:13 PM
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  • Own the problem? Huh? Anyway, yep, had massage, and months of PT. MANY months of PT with several different therapists. Dont mind deep tissue massage. Even had ASTYM which is a nifty form of torture. None of these lessened the pain a bit, caused headaches, and did not change the symptoms in the short or long term. And, myofascial pain is kinda a description rather than a diagnosis. It is like saying "it hurts". So, that was the initial diagnosis, but this diagnosis has not been repeated with the other visits. I have had most conventional treatments, several times. I have tried acupuncture. I am looking for a good diagnosis so that I, and my medical team, can figure out where to go from here. We have no particular headache clinics here, or near here. I am not an inactive person, have a joyful active toddler and keep busy. I had myofascial pain too. My suggestions:1. Own the problem - no excuses.2. See either a phyisical therapist or deep tissue massage therapist who will get their knuckles deep down into your sore muscles.3. As long as there is no HARM in the therapy being provided, you may HURT from the therapist pushing their thumbs into your pain spots.4. Without exception, do all of the exercises they give you.5. Even if the pain they give you seems intolerable at the start, you must let them do their work and build up to more and more pressure.It will get better - unless for some reason you sabotage your own recovery, but that's another story.
    Anonymous 42789 Replies
    • February 1, 2009
    • 09:35 PM
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  • The symptoms described and pain distribution would indeed be consistent with myofascial pain associated with stress. Chronic pain at the rhomboid and trapezius represents the single most common complaint within the orthopedic specialty and accounts for probably more than 25% of all visits annually. I also would not consider Lupus or Rheumatoid to be among the differentials because of the absence of other sequelae. You don't make mention, but I would ask whether you are aware of any significant events occuring 3 years ago or ongoing stressors that up to this point, have been discounted as being causal factors related to the musculo-skeletal complaints, even the migraines to some extent? Many times, I had patients who possessed a somewhat rigid perspective about life stressors, indicating that stress is just part of their lives and something that they face daily. They did not under most circumstances consider stressors to be capable of producing physical symptoms and measured this belief based upon past history free of any former instances similar in nature. I would simply point out here that certain stressors, if intense enough, will sort of transform from being recognized as anxiousness, apprehension, frustration, even anger to producing physical symptoms that are rarely associated with the precipitating stress factor. It is a rather innate process to associate physical symptoms with physical disease, but this is not true in certain cases and often makes patients feel trapped that the medical community cannot locate the underlying physical cause. Since your diagnostic tests are ringing up zeros, my suggestion at this point is to determine whether you believe stress may be a factor and then treat it as the underlying cause to determine whether a change in patterns is experienced. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • February 1, 2009
    • 11:48 PM
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  • Hello,Thank you for your reply. We have all looked at stress, trying to figure out what could have caused this. I do not have much stress at all, although before this ever happened, my life was fairly stressful. I am actually happy, good relationships, I stopped working and so have plenty of time to take care of my kid, life is good. No money problems, etc. I have a background in family therapy, so am pretty good at taking an inventory of my life/feelings. I had considered that the nearly sudden absence of stress might have something to do with all this...but my Dr assured me that didnt make sense. It seems to me that whatever started this all off, injury or whatever, the problem has settled in to a "chronic" problem....which is unrelated to whatever first caused it. My wiring just seems to be wacko now, and my muscle/pain responses to any therapeutic techniques becomes exaggerated and protective. That is, my system is stuck somehow, and no one seems to know how to unstick it. I have tried some muscle relaxants and pain meds, but nothing else because of pregnancy and breastfeeding. For what it is worth, my pain management physician and primary care physician do not think this is a psychological issue.
    Anonymous 42789 Replies
    • February 2, 2009
    • 00:29 AM
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  • Well, it's worth quite a lot considering that the internet tasks a physician as pretty much operating in the blind and absent direct evaluation. I would also suggest here that your mention of the absence of stress, if we're speaking of your practice within the realm of family therapy, might be more insightful than your doctor may think. As you well know, counselor, there is mutual benefit demonstrated in the exchange between therapist and client, often for the purpose of appealing to the currents which originally attracted one to the art. I've once again reviewed the original posting and based upon the symptoms, would still suggest this to be myofascial pain secondary to stress. The problem here is that the course extends 36 months and would offer ample time for underlying physical causes to become more florid. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • February 2, 2009
    • 00:52 AM
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