Page 1 of 2 12 LastLast
Results 1 to 15 of 19

Thread: Cry For Help

  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 I’ve 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 wasn’t that bad and that it was good I became aware of it early. I wasn’t 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 doctor’s way of saying I don’t 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 ‘fibromylga’. 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 can’t do just to prove to myself that I won’t 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 can’t 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 can’t 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 couldn’t 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 friends’ 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 don’t want to quit on me. I sometimes try to make my self feel better by saying “oh come on, it could be worse, what if it is cancer, what if it is AIDS? Look at this person and that person… look what they have to endure?” I would have these dialogues within me to uplift me but the truth is so loud that it drowns these attempts. I can’t fool or cheat my self out of the pain I feel every waking second. I don’t 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 ‘mange it’. 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 “healing process”. But I was far from being healed. It wasn’t 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 didn’t? What resources are out there for me? I don’t 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 04:31 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
    6,797
    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

  7. #7
    Join Date
    Jun 2005
    Location
    Oakland, CA
    Posts
    4

    Thank You ALL!

    Wow! Thank you SO VERY MUCH. ALL OF YOU! You know I don’t believe in mere accidents… I was meant to stumble across this beautiful site at the time I did. I was at the end of my rope and really feeling like perhaps I am meant to live in misery for however long or short of time I am allowed on this Earth. It was just yesterday that I discovered this site and already I am gaining so much more information than I ever had! Not to mention the comfort I am drawing from the knowledge than I am not ALONE! As sad and as sadistic as it may sound misery does indeed loves company Not so much because I want somebody suffering just as much as I do, in fact I wouldn’t wish this on my worst enemy, but to find a connection and understand even the simple language we use to express our pain and the emotions attached is simply magnificent and very much helpful. Perhaps not for the physical pain but definitely for the emotion...as we all know the emotional distress definitely manifests in the physical so if I can massage my emotions through your beautiful, encouraging and supporting words then I am one step closer to the long and hard process. For all of this I thank you guys and I hope I too will be able to reciprocate the favor should any of you seek it.

    Just today my husband and me were at the mall… I haven’t even walked in the mall for like 10 minutes when the pain started in my legs! I mean I couldn’t put my one foot in front of the other if my life depended on it! I started limping and I was trying to hide that from my husband so I asked him to go to men’s department as I tried to push and will my self to walk through the pain but I simply couldn’t do it. My heels refused to allow the rest of my body stand on them and my knee refused to carry me through the reminder of our shopping. Finally my husband said let’s go and as I started to head out I was overwhelmed by all if it and leaned against the wall and started weeping in pain and with shame. It is so hard to have my husband, the one whose eyes I want to lit up with pride, see me in such vulnerable position. I am used to my independence and I am having a hard time with it even though he is such a darling and my angel in all of these. Not only that the thought of not being able to walk or do anything is chasing my feisty sprit out of me and I hate feeling sorry for my self
    Martin you are right and I am getting him involved as much as my ego/pride allows me Just today actually I told him that I want him to come and read this forum but I want him to do it after I visit with my doctors and know what exactly we are dealing with. I want him to come and read the similar experiences so that he knows in no certain term that I am not being ‘weak’ about it all and that it is what it is and we need to deal with it as couple since it affects both our lives.

    In any case I have used the lists of Doctors I have found from this forum and selected two orthopedic surgeons that specialize in our case. Dr. Sigurd H. Berven and Dr. David Bradford are the names I’ve found and both are at UCSF’s Medical center here at San Francisco. Dr. David Bradford has been (or still is) affiliated with Twin Cities Scoliosis Center and that seem to have drawn my attention. I have seen recommendation for both doctors on this sites and I have yet to decide on which one to go with. I will be making an appointment as of tomorrow so if anyone here has experiences with either of this Doctor please throw your inputs my way so that I get the best oneJ Lord knows I can’t afford to get another useless doctor. Linda I have seen your remarks regarding these doctors somewhere else so please do help me out with this
    Last edited by TrappedInBody; 06-13-2005 at 01:55 AM.
    NO MORE PAIN!

  8. #8
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Trapped...

    Dr. Bradford is not performing surgery any more. And, I believe he only has clinic hours once a month. You'll be in fine hands with Dr. Berven. Here's his info:

    http://www.ucsfhealth.org/adult/cgi-...&doctorid=1733

    It may take awhile to get an appointment. You'll probably be asked to send a copy of your x-rays and records before they'll make an appointment.

    If you want a recommendation for a rhematologist, I can highly recommend Dr. Kenneth Sack at UCSF. My ex has a rare form of arthritis, and no doctor could tell him what was happening. I got a recommendation from the head of the physical therapy group for Dr. Sacks. It took awhile, with some trial and error, but my ex has his life back, and he thinks that Dr. Sacks walks on water. Here's his info:

    http://medicine.ucsf.edu/rheum/faculty/sack.html

    Since you're in my area, I'd love to hear who the surgeon was who blew you off. If you want to email that to me privately, I'm at linda @ scoliosislinks.com (without the spaces).

    Regards,
    Linda

  9. #9
    Join Date
    Mar 2005
    Location
    Pennsylvania
    Posts
    8
    I could have written most of your post. I too suffer from excruciating back pain and feel the need to press my back against something (like a wall or hardwood floor) to relieve the pain. I am also a 27 year old female who feels like all I have to look forward to in life is more pain and less enjoyment in life. I'm not trying to depress you further - honest! But, I wanted to let you know that you aren't alone in the way you feel physically, mentally or emotionally. If you ever want to chat my yahoo id is: lois_c78

    (((hugs)))

    Lois

  10. #10
    Join Date
    Nov 2005
    Location
    Finland
    Posts
    64

    tseesuz

    I see the whole world is full of pain patient as I was. Search a doctor, who can correct Si-joint! There are not many of those! Look for google or something! They exist, but there are not many of them...

    I am 100% sure you have at least one Si-dysfunction, or both!

    After correcting that look for a chiropractic/naprapath/osteopath who can correct your hip dislocatons, because that follows afer SIJD. Then anyone of them to cure your spinal subluxations. After that perhaps the most important is to correct your "os occipitale" (I don't know the english word). After that you will feel a lot better....

    Of course it would be best to find someone who can do that all....

  11. #11
    Join Date
    Oct 2005
    Location
    Grand Rapids, MI
    Posts
    313

    Fellow sufferer

    Dear Trapped in Body,

    So sorry to hear how you feel; I can relate greatly with having both fibromyalgia and scoliosis. I had to fix thanksgiving dinner today and was in such terrible pain in my neck and shoulders that I didn'[t know if I was going to make it through the day. THen after dinner I was too tired to even visit and had to nap on the couch while everyone else talked and watched football.

    Besides getting the scoliosis diagnosis, I would encourage you to get the fibromyalgia diagnosed by a rheumatologist or a dr. who specializes in fibro. There is a good fibromyalgia message board site where you can get some support and lots of information on meds, etc. This is at: http://www.fibromyalgiachat.com/foru...?b=FM&post=yes

    Let us know how you are doing. There isn't any quick answer to all of this. Lots of time it is just asking for the strength to get through one day at a time.

    Deb

  12. #12
    Join Date
    Jul 2008
    Location
    west midlands, UK
    Posts
    152

    Angry Cry for help

    Hi, I live in the UK and im new to the forum.I was feeling so alone with my pain until I found this forum.Its so hard to descibe the pain-even to those closest to you.Im 42 years old and my curve is 60 degrees-measured last year.Its not the back pain thats getting worse-thats already bad! its pain in other areas.Im now getting awful neck and arm pain and everything I do triggers it.My doctor has put me on Lyrica(I also take co-dydramol) as he says the shooting pains in my arms are nerve pains but I now have really bad muscle pains whenever I use my arms.I cant sit comfortably anymore as I feel like I dont know how to hold my neck.Im waiting to see my specialist again about the arm pains.Could it be my neck causing these? Im also so scared that my curve will progress-I think Id rather not know.Ive been told they wont operate as Im fit,healthy and mobile-even they wont be convinced of my pain because I look so well but everyday I have to lie down with the pain.I have read of so many of you having operations and feel like Im being ignored my my doctors.If I was living in the USA would an operation have been suggested?

  13. #13
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Dear bluestone-- I am so sorry you are experiencing such pain. I am not very knowledgeable about this-- other than reading some books, info on the internet, and info from the this forum-- but surgery is usually considered once curves approach 50º. Depending on your age, extent of deformity, your body's ability to recover from MAJOR surgery, the recovery can take quite awhile, and there are, of course, possible complications. That may be why your doctors are reluctant... but with a 60º curve, one would think it would be an option for discussion. I think it's definitely a possibility that the arm pain is connected-- maybe you have stenosis in some of the cervical vertebrae. That would be my TOTALLY UNEDUCATED guess... You can read about it at this link:
    http://www.spineuniverse.com/display...rticle209.html. Is your specialist a scoliosis specialist? I hope he/she will be able to help you so that you are not in such pain all the time. Keep us posted with what happens at your appointment...
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  14. #14
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903

    Just throwing something out here...

    I think some patients with untreated or hard-to-treat Lyme have pain like you describe.

    There is some issue with doctors not wanting to recognize or admit that there is chronic Lyme disease. A few doctors that have prescribed massive antibiotic doses for months/years have be threatened with losing their license.

    I'm not totally up on this but I do know someone who has chronic Lyme and has been on massive antibiotics for month and months and she has finally turned the corner. Another person I know needed at least two rounds of antibiotics to clear the infection. And I have known horses who were put down because of Lyme.

    The problem is not all folks with Lyme get the classic bullseye rash so they have no idea.

    Just something to consider although this isn't much help until most doctors will even admit chronic Lyme exists.

    It's an interesting coincidence that Lou Gehrig, who died fo ALS, had a vacation home in Lyme, CT. Maybe there is some connection with ALS and fibromyalgia.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    The Lyme thing was directed at the OP.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •