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Back to Square One

AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:25 AM in Chronic Pain
So anyone that may have read my introduction knows I've had chronic neck/shoulder and upper back problems for over 5 years now. Often times my neck and shoulders will literally lock up on me for days - on an average basis I'm generally just in pain, tired and depressed though.

Well a little over a week ago my doctor called me and told me my blood work showed I may have arthritis - he set up an appt. with a specialist to determine what kind. To be honest I was both upset and strangely happy with the diagnosis cause now I at least had a name for what this is. But when I went to see the specialist today he told me he doesn't see any of the physical signs of arthritis and that the blood test is notorious for testing a false positive.

He did say he had two theories - I either have hypermobility syndrome or fibromyalgia - he told me to exercise and call him in a few months if it doesn't get better... I'VE ALREADY DONE THIS!!!! I've been to PT, I've had a gym membership - I feel like nobody is listening to me!!!! I just reviewed the symptoms of each but they don't seem to be a fit at all! And I just paid this specialist a co-pay that will soak out the last bit of money I have in my bank account until pay day Friday so now I have no gas money for this week. This is beside the medical point I know, but it's yet another negative consequence of me even bothering to find out what's wrong with me. No answers and now no gas money! I wish I could just throw my hands up and never get out of bed again but that's not even an option. I'm so disappointed. :< I'm sorry to be such a crybaby but I don't really have anyone else to talk to.


  • Have you had a mri,or x ray ct scan or bone scan?
  • What is hypermobility syndrome? I hate when doctors just "blow us off". So sorry you are experiencing that right now.
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  • Hi bigcat - I had an x-ray 5 years ago when this all started and it showed my neck was straight, not curved like it should be. They haven't given me once since even though I keep mentionning that it's been like 5 years - I would think it might be a good idea to check it out, but they're the experts I guess.
  • Hi Cherish - that's what I said! LOL I've never heard of this.

    Hypermobility syndrome apparently is considered a benign joint syndrome. The The Hypermobility Syndrome Association (HMSA) wrote that its difficult both for medical practitioners to treat and for patients to control so that's fabulous (the rheumatologist basically said the same thing). The rheumatologist explained that my joints move and bend beyond the normal range, making them susceptible to injury and pain - so I may be hurting myself by over-extending my joints simply b/c that's how far they can go. Between the two - Fibromyalgia and this one - the symptoms of this one seem more on the mark - but the treatment section is WAY OFF for me - it says:

    Often joint hypermobility causes no symptoms and requires no treatment. (I have constant pain and stiffness; often locking up in the neck/shoulder area every few months)

    Many individuals with joint hypermobility syndrome improve in adulthood. (This has not improved with time, it's getting worse from what I can tell)

    Treatments are customized for each individual based on their particular manifestations. Joint pains can be relieved by medications for pain or inflammation. Proper physical fitness exercise can strengthen muscles and stability, but the nature of the exercise should be designed to avoid injury to joints. (I've been to PTa few times and had a gym membership but had no luck in this department. I guess I'll just try again - I really have no other choice right?)

  • I was diagnosed with hypermobility syndrome, a.k.a. hyperflexibility syndrome a.k.a."double-jointedness". The diagnosis doesn't really suggest any course of treatment; its just that people with hypermobility syndrome tend to have more pain issues. Its like saying fair-skinned people sunburn more readily. No one will treat your fair-skinned-ness. The only advise I was given relative to the hyperflexibility thing was not to stretch. Other than that, you have an interesting quirk that is not much more than that. It certainly isn't anything pathological. Its more of a "characteristic" like being right handed, than a disease process. And so the struggle continues.........Susan
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  • An MRI. You have to find a way to get one. It most likely will show you the reasons for your pain. If your doc won't give you one, get a new doc!!! Push until you get one, it's what I had to do and while it was extremely daunting and frustrating, I know why I'm in pain now and I'm finally getting my pain controlled. I wish you the best luck and strength to keep pushing...

  • i know all about going back to step one, believe me. it's so hard when you have chronic disabilitating pain and doctors cannot find the source of it. it's sad, really. i still don't have a diagnosis. sacriliitis is what one doc said, but all he could offer was sending me to a drug rehab as he was too afraid to prescribe anything to me and i've been on meds from another pain clinic for 8 years.

    i moved to be with my fiance, who decided that he didn't want a relationship with someone who had chronic pain--even though i felt as if i was almost normal during that time, just had to rest and stretch every 1/2 hour if i was active and take my meds. anyway, when i returned, my old clinic said they wouldn't see me anymore, just left me high and dry with a large medication dependency after 8 years of me seeing them.

    so i feel your frustration. try another doctor. i know it's hard to fill out all those forms everytime, and believe me, i'm aware of the money situation. i can't work currently--my brain is too fried to even do editing or write on my own novels from the neurontin--so i only get 600 a month and i can't afford the copayments of 20% since most docs don't take medicaid.

    but then i realized that this is my life. it's the only life i have. i was ready to commit suicide, really. then i decided that i don't care if i get even more in debt than i am--i've probably spent over 120,000 on herbs, health foods, holistic methods, etc. to get rid of my pain in the past 10 years.

    but if i don't continue to try, i will die as i am now living in a 200 sq. ft. detached room at my parents' house and they yell all the time and i am too old for this. i want a normal life, a job. i want to enjoy my hobbies again.

    here, at last, i have all this time and i can't even write or paint. lol

    so, just keep trying. all doctors are not the same.

    i wish i could find dr. house, of course, but he's a character.

    and, hon, i do think that some doctors treat people without money worse than those who have money. i don't know why, but my experience says so much. when i was married, or even affianced, i was treated with more respect. as a divorced woman who is starting to show her age, wears no jewelry, i feel like i'm being judged as a human being that isn't really worth saving. by saving i mean becoming functional.

    i'm disabled according to federal law, but i don't want to stay this way. i want to find a doctor who will fix me so i can have a life. i'm 48 years old and have been struggling with pain since i was 37, lost my uterus as my gyn said that was causing my pain, after spending a year in fertility treatments, lost the husband, got on pain meds after that, and probably too much as i was very depressed and the pain was at its worst, and now just want off this train of pain.
    i'm going to fight for my life. i had to beg a pain mgt. doctor to take some tests last week. he just said, i can't prescribe narcotics, and i told him i didn't want narcotics, i wanted him to find out what's wrong with me.

    it's a battle when you're diagnosis is different depending what doctor you go to or if it's a nebulous disease.

    all i know is that i hurt and i'm sick of it and i want to get better. if i have to hurt more and get off the meds so i can be taken seriously, i will. i just hope that i'll be able to drive to a doctor. if not, i'll go to the hospital and maybe i'll find a doctor there.

    there has to be a doctor house somewhere. by doctor house, i mean the tv show.... O:)
  • Hi Shannon,

    Where do you live?

    Sorry to hear about your problems. I have hypermobile symptoms that I am addressing with a team of physiotherapists, osteopaths and rolfers (release fascia).

    I am a doctor who has had to take time off from working as a junior doctor due to 'back problems' that are a consequence of bilateral hamstring tears from dancing. These injuries were the final point beyond which my hypermobile body could no longer adapt, and so I was forced to address my mobility and stability issues.

    Unfortunately the numerous rheumatologists, sports doctors and physios I have seen over the years have been completely ignorant of hypermobility, its symptoms and management strategies. I have finally found a physiotherapist in Australia who is a problems solver and understands the biomechanical challenges involved with hypermobility.

    A book worth buying is "Hypermobility Sydnrome- recognition and management for physiotherapists", by Rosemary Keer and Rodney Grahame, a British Physio and Rheumatologist, respectively. It was the beginning for me of finding some answers. It may give you a better understanding about the complexities of HMS.

    Simply put, hypermobile people have muscles (local/stabilisers) that are supposed to control the joint range in every day movements (eg.postural control) but that don't work adequately to control the joint movement and prevent injury. As a consequence, bigger muscles (global/mobilisers) that are designed for co-ordinated and multiple joint movements, come on inappropriately and can cause fatigue, spasm, pain, stiffness, and change in posture.

    In response to what you mentioned about your actual symptoms. You will probably have hypermobile joints in your neck that are not adequately controlled by local 'stabiliser/local" muscles and as a consequence larger "mobiliser/global" muscles turn on in attempt to stabilise the joint. The problem is that these "mobiliser" muscles are not designed for single joint control and endurance and thus fatigue and cause spasm and pain, and also then effect how you use that, and surrounding joints in every day loaded movements.

    The longer these "mobiliser" muscles are used inappropriately the more likely it will affect your posture, and may lead to fascial and motor changes that further effect the way your local muscles are supposed to work. Long term joint pain and restriction/stiffness also selectively serve to inhibit these local stabiliser muscles rather than the global muscles, which reinforces the poor motor patterns and lack of joint control.

    The good news is that once the hypermobile joints have been identified and the any global substitution patterns recognised, you can do targeted stability exercises to train the local muscles to control the joint movement and prevent the joint resting at end of range (-as can occur in sleep with neck joints, and with poor posture). You don't want your joints to rest at end of range as you can not load them as easily and when you do, they are more suseptible to injury.

    The key to retraining is targeting the correct muscles (the locals) - these are not gym based exercises. It is imperative to make sure alignment/positioning of joint is maintained throughout the exercise, and that your exercise progression is slow, as if you do too many exercises, have poor alignment or increase the difficulty of the exercise too soon (increase load), the big global muscles will take over.

    This information which may sound a bit technical, is what your treating physiotherapist needs to understand to help you address the hypermobile joints that are unstable and responsible for your symptoms. They also would benefit from reading the appropriate chapters in the book about management in the adult.

    Joints naturally become stiffer with age. However, bad posture and injuries also occur with time, and if not recognised and treated appropriately, will be problematic for anyone ( -hypermobile or not).

    It is just like addressing a bad habit. The earlier it is recognised and addressed, the better :)

    Your frustration is understandable, but with a competent and interested physiotherapist, I am sure you may be able to better understand and manage your hypermobility.....Knowledge is empowerment. Don't let any doctor or physio dismiss your questions. It is your body and it is their job to help you understand it and guide you in its treatment :)

    Good luck,

    Deb :)

    P.S. Osteopathy, Alexander technique, Feldinkrais and rolfing may all be helpful in managing your symptoms as well.
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