Chronic pains in the eyes (bellow eye balls), face, jaw, neck and shoulder (right)!

bozena555 Community Member March 03, 2008
  • Hello to all,

     

    I have since very long time very strange pains:

    deep bellow eye's balls and in the eye's holes and feel like my eyes are coming out of the holes. Very often I feel coldness on my face.

    At the same time I am very sleepy, tired and look strange, as that is not me.

     

    My diagnosis till now are:

     

    Hypotireosis,

    Sinusitis maxillaries,

    Neuralgia suprascapularis,

    Enthesopatia levator scapula.

     

    There were only two Neurologists, they did help to me: with injection on the bottom between neck and shoulder muscle, right. I have no more connection with them. Here, where I live nobody helps me.

    Some say, the cause for my pains is Nerve Suprascapulars; some again there are trigger points on the face, neck, head and shoulder connected with my sinusitis (very dry mucus).

    Add This Infographic to Your Website or Blog With This Code:

     

    I want to know, who has something similar? Who can give me some advice?

     

    Thank you,

    Bozena

15 Comments
  • Anonymous
    Polly
    Sep. 18, 2012
    Bozena, I am reading your history years after you wrote it and I am SO sorry for all you are going through. I hope you have found some answers. I understand the medical "run-around" myself. I've had mystery illnesses all my life as well. The two "truths" when it comes to doctors: they all have different answers and they think they are the only one who's right....
    RHMLucky777
    Read More
    Bozena, I am reading your history years after you wrote it and I am SO sorry for all you are going through. I hope you have found some answers. I understand the medical "run-around" myself. I've had mystery illnesses all my life as well. The two "truths" when it comes to doctors: they all have different answers and they think they are the only one who's right. That makes it virtually impossible for the average person to get help. I know one thing: a good general practice doctor is worth his weight in gold. Unlike specialists, they don't fall into the trap of thinking only within their field. They have to look at the big picture. If you are still struggling with this PLEASE, PLEASE don't give up. If I were you I would concentrate your efforts on finding that general practitioner who listens patiently about your symptoms and doesn't dismiss your suffering. If he (or she) makes you feel rushed, or not taken seriously, MOVE ON!!! The more arrogant the doctor, the less help he/she will be. A good doctor will admit when they don't know an answer but they will formulate some ideas in their head and talk them over with you. They will likely have to send you out to some specialists (those doctors who think they are the most special) but I would explain to your doctor that you have a difficult time getting specialists to give your situation the time and thought it requires. Ask your doctor if he would please attach a personal note with your referral. This can very well help to make your case stand out and to keep you from getting the brush-off. It's worked great for me. Another piece of advice -- though I admit bias in this case -- is to stay away from the psychiatrists. I've been to a LOT of them and they have all done more harm than good. Worst move I ever made was to set foot into that world. You have a PHYSICAL problem. Don't let anybody tell you otherwise. Besides, anything that a psychiatrist can prescribe, a GP can also prescribe. Only GP's will have more options. Talk to people and see who they use for a doctor, and ask them why they like them. You have to use your head here because some of the doctors your friends like will be useless to you. My mother referred me to her doctor, and she turned out to be the worst doctor I've ever been to. She was SO lousy, in fact, that I wrote a very honest review of her on the web. Since then other patients have posted similar negative reviews. This is a good screening process for doctors too. Just type their name and location into Google and see what reviews pop up. Another gem: call the doctor's office and ask the secretary if this doctor takes time to listen carefully to the patient. Just ask them point-blank. If they pause or start hedging or trying to define a fair amount of time then most likely this is a doctor to avoid. It's not bulletproof but if they burst out immediately and with some degree of postive emotion about how the doctor spends a lot of time with his patients then you have probably just gotten a truthful answer. People usually pause before they answer questions when they have to think up what to say and/or how to say it. A spontaneous answer will more likely be the honest answer. This is another good way to screen out bad doctors: just ask what you want to know and pay close attention to the response. If they sound hesitant, move on. Don't waste the time, money or emotion on that one. I must go for now but I wish you all the best. Sincerely, Polly
  • Anonymous
    Anonymous
    Mar. 19, 2008
    I suffer from neuropathy and for years my doctor never gave me pain meds or even told me about pain clinics.  I live in Pgh PA and there are lots of pain clinics popping.  before I started going there I also went to a neuroligest and he thought I might have had ms.  He sent me for an mri and ruled out ms.  He never called me to tell me. ...
    RHMLucky777
    Read More
    I suffer from neuropathy and for years my doctor never gave me pain meds or even told me about pain clinics.  I live in Pgh PA and there are lots of pain clinics popping.  before I started going there I also went to a neuroligest and he thought I might have had ms.  He sent me for an mri and ruled out ms.  He never called me to tell me.  I waited a few weeks (scared to death) and I called his office and the nurse pulled my file and said he closed the case and would be in Isreal for another month.  Point being he never called me or sent my diagnosis to my primary care doctor.  Finally I heard about the pain care center.  I still have horrible days but the pain care doctor puts me on medicines that help.   They also implanted a spinal cord stimulator which is another great help.  Check to see if there are any pain clinics around you.  Mine is located right in the hospital.  Your doctor can not tell you that you can not go.  Its just that if you don't ask them they usually won't offer.  Hope you find relief.  I also have some strange symptoms.  Half my  body is so hot and the other half is ice cold.  The pan clinic doctors are used to hearing strange syptoms and they are so much more compassinate and knowledgeable than regurlar m.d.s  Good luck marybeatty53@hotmail.com
    • bozena555
      Mar. 26, 2008

      Hello Anonymus,

       

      You should make more medical examinations, not only one. Why don't you go to see, how is your spine; your thyroid: those two parts of the body are connected with many deseases.

       

      First of all I went to see, how is my Thyroid. It is too small and I have to take hormones every day.

      Second was my spine (X-rays): there is a lot of Spondylarthrosis...

      RHMLucky777

      Read More

      Hello Anonymus,

       

      You should make more medical examinations, not only one. Why don't you go to see, how is your spine; your thyroid: those two parts of the body are connected with many deseases.

       

      First of all I went to see, how is my Thyroid. It is too small and I have to take hormones every day.

      Second was my spine (X-rays): there is a lot of Spondylarthrosis but nobody cares about that. Diagnosis is: Syndrome cervicalia. I have nothing against the pains. Except for nose mucus membrane decongestion.

       

      About Neurologists: from ten of them one is good. They are good if you pay extra money. 

       

      Hope, you will do it right.

       

      Kind regards,

      Bozena

  • SHARON FELDMAN
    Mar. 16, 2008

    i too have intense pain in ever place you mentioned.  i do not know if we share anything the same but besides having horrendous TMJ caused by an Oral Surgeon yrs ago who broke my jaw trying to put in an implant the life i knew was gone.  i do have many many other problems that i won't mention now but you can read my post if you care to. ...

    RHMLucky777

    Read More

    i too have intense pain in ever place you mentioned.  i do not know if we share anything the same but besides having horrendous TMJ caused by an Oral Surgeon yrs ago who broke my jaw trying to put in an implant the life i knew was gone.  i do have many many other problems that i won't mention now but you can read my post if you care to.  what i do have now among all that is a disease called SJOGRENS and not all that well known. i am sure you have heard of dry eyes but this goes beyond that.  you have dry everything including your mouth.  this means you teeth basically rot and fall apart.  my joints in the jaw turned into stone so to speak.  it anklyosiosed and attached itself onto my skull. a normal mouth opening is 40 mm.  mine only opened 2 mm.  the pain got worse and worse and worse. it took me a year to find the right doctors to help me.  all the others learning of my med history said hello nice to meet you....good bye. long story shortened.  i have had to go through complete joint replacements of the joints on both sides of my face.  i am in the middle of recouperating now.  i also had to have  what teeth remained pulled which was 20.  i literally had to have custom made joints made for me out of titanium or some mental such as that.  now rejection factor to worry about.   it is a horrendously painful surgery for sure.

     

    maybe you should check with a Rheumatologist that knows about Sjogrens and have yourself checked out.  just an opion and hopefully a helpful one.

     

    hope to hear from you again,

     

    in friendship

    sharon

    • bozena555
      Mar. 17, 2008

      Dear Sharon,

       

      I am very sorry for you. What did you say about your teeth? I don't understand very well. How many teeth they pulled out to you? I think, many doctors make mistake with teeth. They have to look first exact is the cause there or somewhere else.

      Believe me, I was until two months in German Health Forum. They told me to look if I have Amalgam....

      RHMLucky777

      Read More

      Dear Sharon,

       

      I am very sorry for you. What did you say about your teeth? I don't understand very well. How many teeth they pulled out to you? I think, many doctors make mistake with teeth. They have to look first exact is the cause there or somewhere else.

      Believe me, I was until two months in German Health Forum. They told me to look if I have Amalgam. I told them, no. But they insisted and I went to make X-ray from all my teeth. There is nothing.

       

      I know what is Sjoegren and I don't have it.

       

      I have something either with my neck or my liver. Still don't know, what exactly.

       

      You should see your neck (MRI is the best) and your Thyroid, small Gland that is cause for many other problems. In my case I was born with small Thyroid, but take hormones since 1989. That is a bit too late and I don't see any difference.

       

      I can open my mouth, but I can't open my eyes, in the morning. My nose mucus membrane is over night so swollen (and very dry) that makes great pressure into my eyes. Beside that there is air in the sinusitis holes, that is why I look so as I look. They all say it is from neck muscles. Where from is cause for neck muscle?

       

      If you need anything to ask, ask me please! Leave surgeons beside. I know more women they had ATN operation and they have the same pains again.

       

      Wish you nice day,

      Bozena

       

       

  • SHARON FELDMAN
    Mar. 16, 2008

    i too have intense pain in ever place you mentioned.  i do not know if we share anything the same but besides having horrendous TMJ caused by an Oral Surgeon yrs ago who broke my jaw trying to put in an implant the life i knew was gone.  i do have many many other problems that i won't mention now but you can read my post if you care to. ...

    RHMLucky777

    Read More

    i too have intense pain in ever place you mentioned.  i do not know if we share anything the same but besides having horrendous TMJ caused by an Oral Surgeon yrs ago who broke my jaw trying to put in an implant the life i knew was gone.  i do have many many other problems that i won't mention now but you can read my post if you care to.  what i do have now among all that is a disease called SJOGRENS and not all that well known. i am sure you have heard of dry eyes but this goes beyond that.  you have dry everything including your mouth.  this means you teeth basically rot and fall apart.  my joints in the jaw turned into stone so to speak.  it anklyosiosed and attached itself onto my skull. a normal mouth opening is 40 mm.  mine only opened 2 mm.  the pain got worse and worse and worse. it took me a year to find the right doctors to help me.  all the others learning of my med history said hello nice to meet you....good bye. long story shortened.  i have had to go through complete joint replacements of the joints on both sides of my face.  i am in the middle of recouperating now.  i also had to have  what teeth remained pulled which was 20.  i literally had to have custom made joints made for me out of titanium or some mental such as that.  now rejection factor to worry about.   it is a horrendously painful surgery for sure.

     

    maybe you should check with a Rheumatologist that knows about Sjogrens and have yourself checked out.  just an opion and hopefully a helpful one.

     

    hope to hear from you again,

     

    in friendship

    sharon

  • bozena555
    Mar. 12, 2008

    Hello Tyna and Lisa,

     

    I have something wrong with neck and shoulder muscles.

     

    About teeth and jaw, all is done. There is no cause.

     

    I personally think, that is Myalgia because of Neurovegetative system. My pains come from the right side but deeper, almost to the centre of the spine. My opinion is still, that there is liver cause of my pains and...

    RHMLucky777

    Read More

    Hello Tyna and Lisa,

     

    I have something wrong with neck and shoulder muscles.

     

    About teeth and jaw, all is done. There is no cause.

     

    I personally think, that is Myalgia because of Neurovegetative system. My pains come from the right side but deeper, almost to the centre of the spine. My opinion is still, that there is liver cause of my pains and am looking for right food.

     

    Thank you for replies and nice day,

    Bozena

     

  • Lisa
    Mar. 11, 2008

    Hi there,

     I am sorry that you are having a hard time getting help.

     Are you seeing a pain management dr for treatment?  I think this will benefit you greatly these kind of drs can do so much for treatment and more testing if is needed.

     

    I too have had some of your symptoms and i was told i have fibromyalgia in my eyes. I get lidocaine infusion...

    RHMLucky777

    Read More

    Hi there,

     I am sorry that you are having a hard time getting help.

     Are you seeing a pain management dr for treatment?  I think this will benefit you greatly these kind of drs can do so much for treatment and more testing if is needed.

     

    I too have had some of your symptoms and i was told i have fibromyalgia in my eyes. I get lidocaine infusion therapy to control my pain and flare-ups, it sounds worse then it is. They start an iv and inject the medication and i go home, thats it.

     

    I also get coldness on my face and hands and arms. you need to check both sides of your face and check to see if the tempertures are the same or different. For me I have neuropathy that causes my symptoms.

    lisa

  • Anonymous
    TinaCoyle
    Mar. 11, 2008

    If you have clicking in your jaw and teeth grinding, you may haveTMJ. This syndrome can cause eye pain jaw pain headaches etc.

  • bozena555
    Mar. 10, 2008

    Hello Jerry,

     

    Thank you for reply.

     

    In my case all doctors (from 2001 on) say my pains come from neck muscles. I have very swollen muscle just beside the neck on the right side, down (Levator Scapula).

    About cysts: there are since long time two cysts on my right liver. One doctor from Russia, Chiropractor has looked into my IRIS (eye) and told me,...

    RHMLucky777

    Read More

    Hello Jerry,

     

    Thank you for reply.

     

    In my case all doctors (from 2001 on) say my pains come from neck muscles. I have very swollen muscle just beside the neck on the right side, down (Levator Scapula).

    About cysts: there are since long time two cysts on my right liver. One doctor from Russia, Chiropractor has looked into my IRIS (eye) and told me, that my liver is cause for my pains (Liver Meridian is going through the eye).

    There was also in one Health magazine, that liver can cause swollen muscle on the shoulder. That means, I have to have therapy for liver and muscle. From one German Health Forum one member wrote to me, that yellow dark Urine can be from the liver.

     

    Another Chiropractor, Orthopaedist told me, there is something between skull and neck, few mm long and that should be removed. They all come from Russia: they are first medical doctor and after that study all other: accupuncture, chiropractic and many more therapies, what we don't have here. From USA there is only one Chiropractor but there they study just five years medicine and chiropractic. That is half less, than Russian doctors do.

    I have done MRI of my head, September 2006 and there is one vein, 10x17mm. Now I have to wait until June 2008 to make another MRI of the head to see (Neurosurgeon told me) is that vein for operation or not?

    What you say about first 3 vertebras, that could be right. From there is Levator scapula, the only Myalgia I have as a diagnosis from Orthopaedist here. None therapy can help me anymore.

    What is very strange in my case: when I am in Solarium, all my pains are away. I need deep warmth and then feel better. 2005, in Austria Tirologist (doctor only for Thyroid) told me, I was born with small thyroid. That is big difference than they told me first (end 1989) that I probably had inflammation of thyroid (I should know that!).

    Don't worry about medical words: I have been in so many Health Forum's ( German and English) I have learnt a lot about medical words. Beside that (by accident) I have found on Google dictionnairy: Anatomy in Slovenian-English-German.

     

    I have lost all my joy for anything. These pains make me more dammage: I am very tired and sleepy; steady pains in the eyes and face; swollen face and right side of the neck; strange look as that is somebody else. It is great pressure into my eyes. I want to know, why?

     

    Kind regards,

    Bozena

    • Anonymous
      Polly
      Sep. 18, 2012
      Bozena, I am reading your history years after you wrote it and I am SO sorry for all you are going through. I hope you have found some answers. I understand the medical "run-around" myself. I've had mystery illnesses all my life as well. The two "truths" when it comes to doctors: they all have different answers and they think they are the only one who's right....
      RHMLucky777
      Read More
      Bozena, I am reading your history years after you wrote it and I am SO sorry for all you are going through. I hope you have found some answers. I understand the medical "run-around" myself. I've had mystery illnesses all my life as well. The two "truths" when it comes to doctors: they all have different answers and they think they are the only one who's right. That makes it virtually impossible for the average person to get help. I know one thing: a good general practice doctor is worth his weight in gold. Unlike specialists, they don't fall into the trap of thinking only within their field. They have to look at the big picture. If you are still struggling with this PLEASE, PLEASE don't give up. If I were you I would concentrate your efforts on finding that general practitioner who listens patiently about your symptoms and doesn't dismiss your suffering. If he (or she) makes you feel rushed, or not taken seriously, MOVE ON!!! The more arrogant the doctor, the less help he/she will be. A good doctor will admit when they don't know an answer but they will formulate some ideas in their head and talk them over with you. They will likely have to send you out to some specialists (those doctors who think they are the most special) but I would explain to your doctor that you have a difficult time getting specialists to give your situation the time and thought it requires. Ask your doctor if he would please attach a personal note with your referral. This can very well help to make your case stand out and to keep you from getting the brush-off. It's worked great for me. Another piece of advice -- though I admit bias in this case -- is to stay away from the psychiatrists. I've been to a LOT of them and they have all done more harm than good. Worst move I ever made was to set foot into that world. You have a PHYSICAL problem. Don't let anybody tell you otherwise. Besides, anything that a psychiatrist can prescribe, a GP can also prescribe. Only GP's will have more options. Talk to people and see who they use for a doctor, and ask them why they like them. You have to use your head here because some of the doctors your friends like will be useless to you. My mother referred me to her doctor, and she turned out to be the worst doctor I've ever been to. She was SO lousy, in fact, that I wrote a very honest review of her on the web. Since then other patients have posted similar negative reviews. This is a good screening process for doctors too. Just type their name and location into Google and see what reviews pop up. Another gem: call the doctor's office and ask the secretary if this doctor takes time to listen carefully to the patient. Just ask them point-blank. If they pause or start hedging or trying to define a fair amount of time then most likely this is a doctor to avoid. It's not bulletproof but if they burst out immediately and with some degree of postive emotion about how the doctor spends a lot of time with his patients then you have probably just gotten a truthful answer. People usually pause before they answer questions when they have to think up what to say and/or how to say it. A spontaneous answer will more likely be the honest answer. This is another good way to screen out bad doctors: just ask what you want to know and pay close attention to the response. If they sound hesitant, move on. Don't waste the time, money or emotion on that one. I must go for now but I wish you all the best. Sincerely, Polly
  • jerry hesch
    Mar. 06, 2008

    Dear Bozena,

    It would be helpful to know which specialists you have seen and a guess at how many times you saw each.

    I have some ideas but prior to posting them will await your response.

    I am hopeful for you.

    Sincerely

    Jerry H

    • bozena555
      Mar. 07, 2008

      Hello Jerry,

       

      From September 1989 I have visited all possible specialists (except Oncologists and Pediatric):

      1. Orthopaedist: 1993, 1996 (2x), 1998 (2x), 2001 (1x), 2003 (1x), 2005 (1x);

      2. Neurologist:   1993 (1x - he told me, that I have TN), 1997 (1x - nothing), 2001 (1x -

                           ...

      RHMLucky777

      Read More

      Hello Jerry,

       

      From September 1989 I have visited all possible specialists (except Oncologists and Pediatric):

      1. Orthopaedist: 1993, 1996 (2x), 1998 (2x), 2001 (1x), 2003 (1x), 2005 (1x);

      2. Neurologist:   1993 (1x - he told me, that I have TN), 1997 (1x - nothing), 2001 (1x -

                            he is Professor at Medical University and he gave me Rivotril that helps

                            a bit, only over night), 2004 (I was in the hospital for Neurology -

                            nothing) and 2007, when she told me, it can help only Traditional

                            medicine.

      3. Neurologist-Chiropractors from Russia: from 1996 till 2002, more times. Only one did

                           help me with the injection bellow right, between neck and shoulder and

                           was good 2 x 6 months. He was the best doctor I have ever met. He does

                           also Bioenegy, but in that time I didn't believe in that. He left 1999.

                           He also has explained how my pains are looking like: muscle makes

                           pressure to one nerve, going into sinusitis maxillaries; from sinusitis I have

                           Trigeminal Neuralgia.

      4. Tirologist:    1989, 1990, 1991, 1993, 2001, 2005 (for thyroid). My doctor told me I

                           can make controll from here with blood testing.

      5. Anaesthesists: each time when I was in the Spa, that means every year since 20

                              years. Their injections did never help to me.

      6. Psyhiaters:   Each time, when I took sleeping pills and was in the Hospital, about 5x.

      7. ORL doctors: Most of the time, because I thought all is from the sinusitis, but is not.

                           Sinusitis is only reflex pain. The very last time was 2001, when he told me

                           as all other: all is from neck muscles.

      8. Neurosurgeon: 2002 (he looked my vessels in the brain, there was nothing), 2008 when

                           I have shown to him CD with Vein, 10x17 mm on the bottom of the skull.

      9. All other doctors that work in the Spa.

       

      More time CT scan of the head. There is atrophy,

      Twice MRI: once from the head (where is the vein, 10x17 mm) and once from the bottom of the spine. There is something wrong with L1.

      Many times radiology of my right arm (where is some small hill, like benign tumour) as also more times from the neck, where is Spondylarthrosis. 

       

      I don't remember anymore, who else. That is enough. I could write a book about all of them.

       

      Regards,

      Bozena

        

    • jerry hesch
      Mar. 09, 2008

      Hi Bozena,

      I have been busy, but I have had you on my mind.

      thank you for your reply. What is a Tirologist? Endocrinologist?

      Because pain is on both sides of face, eye sockets, one (clinician evaluating you) has to ask regarding midline structures or bilateral structures in doing "detective work" and one must think out of the traditional norms, given...

      RHMLucky777

      Read More

      Hi Bozena,

      I have been busy, but I have had you on my mind.

      thank you for your reply. What is a Tirologist? Endocrinologist?

      Because pain is on both sides of face, eye sockets, one (clinician evaluating you) has to ask regarding midline structures or bilateral structures in doing "detective work" and one must think out of the traditional norms, given the chronicity.

      The 1st three nerves in the neck can join the nucleus (root-beginning-origin) of the trigeminal nerve in the spinal  cord which is called the cervico-trigeminal nucleus. Althouh the trigeminal nerves is a "brain nerve" or rather is the 5th cranial nerve, the nucleus does go deep into the neck within the medulla and spinal cord. Thus any pathology that involves any of the 1st, 2nd or 3rd nerves in the neck, can aslo have input into the final field of the trigeminal nerve. I know this empirically, not just theoretically, but i will spare elaboration.

      Thus oblique and lateral x-rays to look for osteophytes in the C2-3 neuroforamina can be helpful, fluroscopy can be much much better at visualizing these and CT scan very helpful and re soft tisssue and discs: MRI. The 1st and 2nd (Occipital) nerves do not go through a neuroforamen.

      I do not practise medicine but an interventional pain management specialist (Anesthesiologist) may be helpful along with a highly skilled orthopedic manual therapy physical therapist.

      Other considerations, the sympathetic nerve supply to the head and neck and face originates is in the upper back, the thoracic spine, and in fact is connected to the front of the ribs. Mechanical evaluation of these areas may help as well as visualization, looking for abnormal anatomy or pathology such as a "benign" space occupying cyst, etc. You have one in your arm, could you have a deeper one?

      This is a "stab in the dark" (expression meanin fast and easy somewhat blind first attempt) on my part, maybe helpful, but maybe off target and of course professional help is necessary and I appreciate you have had some.

      I apologize, I know there is a language barrier/difficulty and that some of my language is "medical".

      A EENT Eye Ear nose and Throat Speialist medical doctor might be a worthwhile consult.

      I wish you the best, please keep in touch.

      Sincerely,

      Jerry h

    • Bozena
      Jun. 28, 2011

      Hello Dr. Jerry.

       

      I am back after three years.

      Hope, I can login and tell something new.

       

      Bozena