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  1. #1
    Join Date
    Jun 2005
    Location
    Oakland, CA
    Posts
    4

    Cry For Help

    Greetings Everyone,
    Before I write any further I like to request my readers to bear with the length of my post. I am in so much pain and in search of a much needed support and understanding and since you and I share similar lived experience I can let loose and let it all out. So I thank you in advance for bearing with my story. For me this is part of the process. The silence is deafening and I am hoping somebody out there is listening to me. God knows I need to be heard.
    My story is as follows:

    I am a 27 (well turning 27 in two weeks) years old female. I was diagnosed with scoliosis eight years ago. Prior to my diagnosis Iíve had occasional back pains, nothing severe. I was an aware of such a disorder. When I came to the state my mom informed me of her diagnosis and told me that the doctor has suggested that I get screened since scoliosis can also be hereditary. In any case, I went to our family doctor and found out that I too have scoliosis. The doctor made it sound so minor and said that my curvature wasnít that bad and that it was good I became aware of it early. I wasnít even shown the x-ray when I asked about my degree of curvature he scribbled a drawing on a piece of paper to show me the C- shaped look alike of my back curve and said that all I had to do was avoid carrying heavy loads, not carry my school bags on one shoulder and exercise. My doctor also said that I have a Cervical Lordosis.
    As years go by I started experiencing more and more back pain and stiffness of my neck. I would feel as though I am carrying the entire world on my head. Since I was enrolled in the Nursing program the demand and the stress of some of the clinical rotation did not help my back pain. In fact after I started caring for a patient with multiple sclerosis (who is completely paralyzed) my back pain become so excruciating because of the strain on my back. I would come from work and would literally crawl on the floor aching all over, tears streaming down my face because it is so painful and I would roll on hard wood floor to relief my pain. I get this urge to be up against something hard to kind of get some sort of support to the area where it pains the most so I stand up against a corner of a wall where it has sharp edges and push my back against it so hard to apply a pressure I seem to seek so badly. My muscles would get so stiff and rigged that at times I feel they will remain that way. I started having muscle spasms mostly on my tighs and muscle/nerve pinches around the spine . I went to my doctor, with out any formal testing or screening of any kind, he diagnosed me with Fibromyalgia (which by the way is often a doctorís way of saying I donít know what the hell is your problem so I will slap you with something incomprehensible) and gave me muscle relaxants to relief my symptoms. Despite the fact I despise pills I started taking the prescribed pill prn and the only thing this drug managed to do was mask my pain for the duration of period it was supposed to last and I would be back to square one when the effect wears off. Not only that it makes me literally a zombie and all I could do is sleep after taking the pill. I realized that the only thing I could be is my own advocate so I started hitting the cyber world reading about scoliosis and fibromyalgia. I learned that there were so many testes that should have been done before reaching the conclusion that what I am suffering from is actually Ďfibromylgaí. The fact that my doctor did not do the proper investigation could very well be the reason for the worsening of my condtion today.

    Particularly over this past year I have experienced pain like I have never experienced in my short existence. I live in a constant and persistent Pain that seems to be getting worse from one day to the other. It has cast a shadow into my bright future and all I can think and be is my pain. This is no way to live! In all of these I have tried to stay strong and at times push my self to do the things I canít do just to prove to myself that I wonít let this disease take congtrol over me. And this very fact has also contributed for the worsening of my situation. Like I said my pain has gotten worse over the past year. On top of the back pain that is been pestering my existence I started experiencing lower back pain that started radiating to my lower limbs. My entire bone hurts. I canít even describe the kind of pain I feel in my bones. My muscles are starting to get weak. The twitch and spasms are more frequent than ever. My elbow joint, pelvic joint and shoulder joints constantly screams of pain. My knee and the heel of my foot are a whole different story. Basically it came to a point that I canít even sand for more than five minute with out feeling excruciating pain in my foot and pelvic area. All in all I feel a prisoner in my own body. Trapped in this beautiful exterior yet in a different kind of hell internally. What is worse in all of these experiences is the fact that nobody around me seems to sympathize (let alone comprehend) what I am going through. Right of the bat I am jugged by my outside. Even with my Doctors I feel the reason I am not being taken seriously is due to the fact that I look very healthy on the outside. There have been numerous times I have contemplated doing something drastic to myself so that somebody actually see me and take me seriously. I feel like unless I am on a gurney or in a wheelchair no one will help me figure out what to do with this pain of mine. I have a lot to look forward to in life. I want to finish my education (which I had to put on hold) and be in the career field I enjoy working in. I want to have a kid someday but that hope is getting diminished by each hour because I can barely stand on my own let alone care after a child. This troubles and sadness me the most because I fear my husband would one day give up on me. He witnesses my pain on a daily basis and that also makes me feel less of a person. Even though he has done NOTHING to make me feel so, in fact I couldnít ask for a better partner, lover, caregiver etc than him. But fact remains that I feel insecure at times that he may one day become resentful of my situation. Even if he knows it is not of my choosing and even if he sympathizes and he loves me etc I feel one can only take so much. We both had high hopes for our lives and now all it is surrounded with is my constant pain with this and that and I feel I am being a burden. I get this urge to voice what I am feeling because I sometimes feel suffocated and I seek that release so badly but I feel like I have exhausted my entire families and friendsí ear with my endless complaints of this and that. I am now in silent mode. And I tell you the scream in my body is deafening! I donít want to quit on me. I sometimes try to make my self feel better by saying ďoh come on, it could be worse, what if it is cancer, what if it is AIDS? Look at this person and that personÖ look what they have to endure?Ē I would have these dialogues within me to uplift me but the truth is so loud that it drowns these attempts. I canít fool or cheat my self out of the pain I feel every waking second. I donít know whom to turn to. My primary doctor is no help. I went on my own to an orthopedic and the minute you mention an existing problem, particularly as chronic and as a life time condition as scoliosis, they automatically put their hands up and say Ďmange ití. How? I went to a chiropractic treatment and signed up for a year. I did the 3 week and then 2 week and then once a week treatment regimen for about half way of my contract and stopped after that. At first when she started doing the adjustments I started feeling the relief, particularly around the thoracic vertebrae, the part that is the origin of all pains. I was so excited and it was like ecstasy I would get so eager for my next session, to get my fix. It was like a drug. But things quickly take a drastic turn because that was when the leg problems, which I have never experienced before, started to emerge. I voiced my concern to my therapist but she tried to assure me that it is part of the ďhealing processĒ. But I was far from being healed. It wasnít even so much of a healing I was seeking. I knew I would have to live with it; I just wanted to manage it so that I can resume somewhat of a normal life. But my leg pain got worse on each session. I could only attribute it to the chiropractic adjustments because that was the only thing I was doing differently at the time.

    Where do I stand now? In search of help again, that is how I stumbled upon this web page. I have learned long ago that you are your own ally and your best advocator. So I am on the search again.

    Please share your experience with me. Has anyone of you share my symptoms? Or am I gradually traveling down a path of paralysis? Only those who live with the pain I live can understand its impact that is why I am talking to you. What helped you? What didnít? What resources are out there for me? I donít want to quit before I try so please Help.

    God Bless You.
    NO MORE PAIN!

  2. #2
    Join Date
    May 2005
    Location
    Texas
    Posts
    91

    Dear TrappedInBody

    Unfortunately, there are no solid tests I know of that are used to diagnose fibromyalgia. Often it is diagnosed after other diseases have been ruled out. I have scoliosis and fibromyalgia. I find that massage therapy really helps, especially on the neck and shoulder areas for me. The last time I had a massage she added warm stones which felt great! I live for my hot baths every night with some sort of relaxing scent in the water. I try to make sure I have the best posture possible when walking, sitting and doing my everyday chores, because I know if I am not positioned right for reading, for example, I will feel it in my neck later. I hope you hang in there and are persistent to maybe get a second opinion from another orthopedic doctor. Like my husband says, "life is painful" but the alternative is worse. Good luck. Judy K.

  3. #3
    Join Date
    May 2005
    Location
    Texas
    Posts
    91

    Dear TrappedInBody

    After looking over the post I got to thinking that I hope you don't think I am minimizing your pain. I, too, know how it is, and I only hope you can find the cause of it. I would definitely find out what your curvature is now as compared to what it was 8 years ago. What sort of tests have you had done? (lab, other xrays, etc.) Unfortunately, it sounds like it could be a long, tough road ahead for you before you get any real answers. Thank goodness for husbands and their support. Please keep in touch with this forum and know that there are many others who are wishing you the best and are willing to help. Judy K.
    Last edited by judyk; 06-12-2005 at 03:31 PM.

  4. #4
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    trapped

    I sent you a personal message.

    Sounds like you got bad advice from your health care practitioners-especially the chiropractor and your primary. I also got no help from my primary doctor and I had triple curves: 30 cervical, 80 thoracic and 40 lumbar with worsening breathing issues. I decided on my own to research on this forum and found my answers. The diagnosis of fibromyalgia may not even be correct!


    I add here that it is a waste of time to visit a regular ortho who does not specialize in ADULT scoliosis. While you search I suggest you visit a pain management specialist to get some relief in the meantime. The pain specialist has a toolbox of alternative management and they try to avoid narcs as much as possible.
    Before my surgery I got relief from Pilates exercises and others here got help from Yoga but the causes must be addressed.
    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Trapped...

    I'm really sorry to hear that you're having such a tough time. While I'm not a medical professional, I sort of doubt that scoliosis could cause pain in your elbows. I'm guessing that your problem is something more systemic since it involves all of your bones. Is there any chance you can be seen by a rheumatologist? They're pretty good at this stuff, especially if you can find someone in a university setting.

    Best of luck getting the help you need.

    Regards,
    Linda

  6. #6
    Join Date
    May 2005
    Location
    Perth, Australia
    Posts
    64
    Hi Trapped,
    Don't worry, you're not alone in what you're going through. I'm sure there's plenty of us on here that have had a similar experience.
    While I doubt my condition would be as bad as yours, here's a few things I found helpful in my walk:
    1. Find out as much information as you can. Hound someone until you're able to find out the angles of your curves, and if it takes another X-ray, do it. My curve was spotted on an X-ray at age seven, and no-one followed it up until my wife convinced me to get off my backside at 27 and have another one. Now I wish I'd done it much sooner. It's a lot easier to deal with a known quantity than the unknown. If your current doctor can't get it done, find another one.
    2. I too have had the muscle weakness you talk of... a year ago I couldn't lift anything above my shoulders heavier than, say, a tin of dog food in each hand. Physical therapy is working for me. It is a long, hard road, but it's rewarding to gain strength where you never used to have it, and to find yourself able to do things you couldn't before. This is something a chiropractor cannot do for you - simply twisting your spine around in different directions does not give you stronger muscles. More's the pity!
    3. Find ways of involving those around you, particularly your husband. My wife sits alongside me every morning now, and joins in my stretching ritual. She loves it, as it's given her extra strength as well!

    Hope you're doing OK, anyway, and that some of this helps.
    Ta,
    Martin

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