Discussions By Condition: I cannot get a diagnosis.

On behalf of my husband! Please help! Chronic Pain! Nothing works!

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: kesaiserris
  • September 19, 2009
  • 08:11 PM

My husband is 28 years old, he is very marginally overweight, 5'7, pretty small framed, small hands and has suffered from chronic pain his entire life, in fact he's never had a pain free day!

Here are the symptoms

Migraines

Daily headaches

2 types of scoliosis, kyphosis, lordosis

Hyper-flexible joints (though he is not really flexible the muscles are stiff) except in his hands and feet, hands are very stiff-hands don't bend back but his grip is freakishly strong like monstrously strong)

Has at any given time multiple-herniated disks

Joints will not stay in place, lots of grinding, popping, clicking, when he cracks his neck everyone hears it (it sounds like its actually breaking, even scarier that his head turns really far around)

Some straitening occurring in his neck

Severe pain in every joint but there is no swelling, redness, or deformity (in fact he rarely appears inflamed even when expected)

Severe back and neck pain (though he can generally take extreme pressure applied to his back and not feel it, he's been tattooed and thought it tickled I guess b/c he's usually hurting so much)

Low appetite, though he seems to crave sugar and salt a lot

Low sex drive, though he doesn't have performance issues whatsoever or reproductive problems or anything wrong down there its all good and when he has a less intense pain day it jumps up so I think its totally pain related the low-drive

Depression

Early balding

Extremely good eyesight and hearing, very bad taste and smell

No medicine works, even like Vicodin and he also can not be put under, he just wakes up not matter how much they give him and the numbing stuff at the dentist does not reduce pain either

He has a lot of cavities

I think he's rather pale for someone who is 1/2 Lebanese

When he was a kid he was covered in spots

He gets extremely high fevers has since childhood, I am talking 105 or something but they are short-lived

Night terrors

He doesn't get really a feeling of endorphins

Pain gets worse with exercise

He does have a heart murmur (and if I listen I can always hear it)/sometimes his heart races for no reason/usually a high resting pulse


His sternum and ribcage even go out of place, complains of not be able to breath, can't take pressure on his chest

Occasionally has high blood pressure not very high marginally high (doesn't now)

Feels like he has a lump in throat

Poor sleep/chronic fatigue

Aside from a death grip (cracked a coconut barehanded which I thought would be impossible) he has normal to good strength

he has been tested for asthma they say he doesn't have it but he has trouble breathing just the same with activity, diagnosed with the heart murmur not really been tested for anything else

Please if anyone has any guesses or something like this? He is really suffering but tries to suck it up b/c doctors don't really believe him. He's never had a pain free day, even as a kid he's had these problems. Over all the pains been pretty stable so not really worsening though now he is forced to have a physical job and its literally destroying him, he's getting sick all the time and his joint pain and the frequency of his migraines is increasing.

Reply Flag this Discussion

10 Replies:

  • Iam not a medical person, but I have scoliosis and hyperflexibility. There is a possibility that your husband may have Ehlers-Danlos syndrome which manifests some of the symptoms you described. Again, I am NOT a medical person. You should find a doctor that you trust and who is willing to get to the bottom of this. Good Luck.My husband is 28 years old, he is very marginally overweight, 5'7, pretty small framed, small hands and has suffered from chronic pain his entire life, in fact he's never had a pain free day!Here are the symptomsMigrainesDaily headaches 2 types of scoliosis, kyphosis, lordosisHyper-flexible joints (though he is not really flexible the muscles are stiff) except in his hands and feet, hands are very stiff-hands don't bend back but his grip is freakishly strong like monstrously strong)Has at any given time multiple-herniated disksJoints will not stay in place, lots of grinding, popping, clicking, when he cracks his neck everyone hears it (it sounds like its actually breaking, even scarier that his head turns really far around)Some straitening occurring in his neckSevere pain in every joint but there is no swelling, redness, or deformity (in fact he rarely appears inflamed even when expected)Severe back and neck pain (though he can generally take extreme pressure applied to his back and not feel it, he's been tattooed and thought it tickled I guess b/c he's usually hurting so much)Low appetite, though he seems to crave sugar and salt a lotLow sex drive, though he doesn't have performance issues whatsoever or reproductive problems or anything wrong down there its all good and when he has a less intense pain day it jumps up so I think its totally pain related the low-driveDepressionEarly balding Extremely good eyesight and hearing, very bad taste and smellNo medicine works, even like Vicodin and he also can not be put under, he just wakes up not matter how much they give him and the numbing stuff at the dentist does not reduce pain eitherHe has a lot of cavities I think he's rather pale for someone who is 1/2 Lebanese When he was a kid he was covered in spots He gets extremely high fevers has since childhood, I am talking 105 or something but they are short-livedNight terrorsHe doesn't get really a feeling of endorphinsPain gets worse with exercise He does have a heart murmur (and if I listen I can always hear it)/sometimes his heart races for no reason/usually a high resting pulseHis sternum and ribcage even go out of place, complains of not be able to breath, can't take pressure on his chestOccasionally has high blood pressure not very high marginally high (doesn't now)Feels like he has a lump in throatPoor sleep/chronic fatigueAside from a death grip (cracked a coconut barehanded which I thought would be impossible) he has normal to good strengthhe has been tested for asthma they say he doesn't have it but he has trouble breathing just the same with activity, diagnosed with the heart murmur not really been tested for anything elsePlease if anyone has any guesses or something like this? He is really suffering but tries to suck it up b/c doctors don't really believe him. He's never had a pain free day, even as a kid he's had these problems. Over all the pains been pretty stable so not really worsening though now he is forced to have a physical job and its literally destroying him, he's getting sick all the time and his joint pain and the frequency of his migraines is increasing.
    Anonymous 42789 Replies
    • September 21, 2009
    • 05:49 AM
    • 0
    Flag this Response
  • Iam not a medical person, but I have scoliosis and hyperflexibility. There is a possibility that your husband may have Ehlers-Danlos syndrome which manifests some of the symptoms you described. Again, I am NOT a medical person. You should find a doctor that you trust and who is willing to get to the bottom of this. Good Luck.He's not been tested for it yet but its one thing I've considered though he doesn't have the super stretchy skin.
    kesaiserris 35 Replies
    • September 22, 2009
    • 11:20 AM
    • 0
    Flag this Response
  • I understand what hes going through. Im sure the docters have thrown words around like fibrofyalgia and CFS but docters just use those words becuase they dont know whats really causeing the problem. try going to cpnhelp.org. I am a 30 year old male and have been sick similarly for 2 years. I finally got a docter to run a serology test and I have a cpn infection. Youll be suprised how sick bacteria can make you. I am 90 percent batter now and its all thanks to cpnhelp.org
    Anonymous 42789 Replies
    • September 22, 2009
    • 02:03 PM
    • 0
    Flag this Response
  • I understand what hes going through. Im sure the docters have thrown words around like fibrofyalgia and CFS but docters just use those words becuase they dont know whats really causeing the problem. try going to cpnhelp.org. I am a 30 year old male and have been sick similarly for 2 years. I finally got a docter to run a serology test and I have a cpn infection. Youll be suprised how sick bacteria can make you. I am 90 percent batter now and its all thanks to cpnhelp.orgActually I have just gotten him to go to the doctor so he hasn't been tested for like anything. Can a CPN infection last for a lifetime? He's never had antibiotics before which is odd so he did think maybe its a lifelong infection
    kesaiserris 35 Replies
    • September 23, 2009
    • 05:42 AM
    • 0
    Flag this Response
  • I'm not a doctor or anything and my simptons are not similar to your husbands but I am 29 years old and am suffering with chronic pain due to a car accident. I am seeing a neurologist they have new treatments for treating pain such as epidural injections etc. My doctor's success rate is excellent. Look up treatments for cervical and lumbar radiculopathy and it will give more details on the injections. They use them for all types of chronic pain regardless of where it is. Neurologist run multiple tests to see where your pain is coming from. They also treat patients with migraines. Sometimes they are called neurological and stroke care centers. Hope this helps. Good luck.
    Anonymous 42789 Replies
    • September 23, 2009
    • 02:58 PM
    • 0
    Flag this Response
  • I think it's a connective tissue disorder,it could be marfan syndrome
    Anonymous 42789 Replies
    • September 23, 2009
    • 07:16 PM
    • 0
    Flag this Response
  • I think it's a connective tissue disorder,it could be marfan syndromeThanks for the responses, I've really wracked my brain on this He is short well relatively 5'7, doesn't have long fingers or toes, isn't flat-footed, has excellent vision 20/10 or better, his arms are proportionately long. Though connective disorders might be a possibility to look into.
    kesaiserris 35 Replies
    • September 23, 2009
    • 08:54 PM
    • 0
    Flag this Response
  • Could be Ankylosing spondylitis.
    Anonymous 42789 Replies
    • September 23, 2009
    • 09:22 PM
    • 0
    Flag this Response
  • His cluster of symptoms sound to me like either vit D defficiency and/or magnesium deficiency or both. They both are linked to chronic pain and poor mineralization of bones and the teeth. anyway they are easy to test for at least the vit d is. RBC magnesium not serum magnesium will test body store of magnesium. It is not a test most doctors do routinely. If you have no kidney troubles epsom salts are easy to try; a 12 minute bath with 500g of the salt added - see if this helps both the migraine and rheumatic pain."The values obtained suggest that most people would find maximal benefit by bathing 2 or 3 times/ week, using 500-600g Epsom salts each time." http://www.mgwater.com/transdermal.shtmlhttp://www.ctds.info/magnesium.html#rachitic www.thevitamindcure.complease note magnesium is poorly absorbed in the gut but easily absorbed from the skin
    Anonymous 42789 Replies
    • September 24, 2009
    • 02:35 PM
    • 0
    Flag this Response
  • His cluster of symptoms sound to me like either vit D defficiency and/or magnesium deficiency or both. They both are linked to chronic pain and poor mineralization of bones and the teeth. anyway they are easy to test for at least the vit d is. RBC magnesium not serum magnesium will test body store of magnesium. It is not a test most doctors do routinely. If you have no kidney troubles epsom salts are easy to try; a 12 minute bath with 500g of the salt added - see if this helps both the migraine and rheumatic pain."The values obtained suggest that most people would find maximal benefit by bathing 2 or 3 times/ week, using 500-600g Epsom salts each time." http://www.mgwater.com/transdermal.shtmlhttp://www.ctds.info/magnesium.html#rachitic www.thevitamindcure.complease note magnesium is poorly absorbed in the gut but easily absorbed from the skinI will certainly look into it, it would be great if he had something we could actually remedy fairly easily. Thanks
    kesaiserris 35 Replies
    • September 25, 2009
    • 06:10 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.