Discussions By Condition: I cannot get a diagnosis.

joint problems

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: snapcracklepop
  • November 29, 2006
  • 09:04 AM

I am a 32 year old male, and have chronic joint pain. My joints pop and snap alot and are sore all the time. I have some skin problems aroud my nose, eyebrows and mouth. I have been tested for lupus and had more blood test than you can count for autoimmune disease. They all came back good. My iron tested really high one time, but a second test came back normal. I have a degenerative disk l5 s1 and have had surgery on both knees but i have never been given a straight diagnoses. The only meds i have been given is celebrex, which does no good. I am :confused: in alot of pain and stay depressed alot. If anyone can help, I would appreciate it.

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  • OK. You sound like another candidate of EDS (Ehlers-Danlos Syndrome). But without knowing a bit more about yourself...Anyway, I posted a reply to Cali who posted after you. I replied as follows:I know I might be totally off track, but you sound similar to some EDS Type III sufferers. Ehlers-Danlos syndrome is very undiagnosed by the medical profession and there are about six types of the syndrome. Did the doctor give you any explaination to your joint problems? You might be interested in visiting this site www.ehlers-danlos.org for a read. Your story sounds so familiar. I suffer EDS, I have very flexible joints and I am in pain. I had to cop the "growing pains" rubbish and the accusations of being a hyperchondriac and I am now 37 and it is only this past month I have had any success getting a couple of doctors to believe me and that was with a lot of work on my part and careful wording of why I needed a couple of tests that might show this and that. What would we do without doctors? A lot more than we are doing now.All the best.Agape, searchingsamFurther to this, I do a lot of crackle and pop. Have you crackled and popped for some time now and have only got worse like myself? Do you have bendy joints? I am hypermobile in every joint but you don't have to be in every jont to suffer with hypermobility or EDS.
    Anonymous 42789 Replies
    • November 29, 2006
    • 09:57 AM
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  • PS. Someone mentioned something about Sebbhorea dermatitis some fews days back in reply to another post, that may be your source of skin problems, and recommended Ketoconazole (nystatin ointment). My quad friend I care for sits in the sun for ten minutes a day and I have applied metholated spirits to her flaking skin areas, all the same areas you mention (and which included her entire scalp and ears) and after 13 years has never looked better. I tend to lean toward natural stuff before ointments.
    Anonymous 42789 Replies
    • November 29, 2006
    • 10:07 AM
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  • Question for SearchingSam: I saw your post about EDS here and on another area of the board, and I was curious if you could give me more information about it. I have been trying to get a diagnosis for my joint pain for the past four years. I am not particularly hypermobile (though when I looked up EDS, I found I can do a couple of the things shown in the pictures, like this: http://www.meddean.luc.edu/lumen/MEdEd/MEDICINE/dermatology/melton/eds3.jpg and the one in the upper left here: http://www.orthop.washington.edu/_Rainbow/Album/10357me1e83e78-d83d-427d-96ef-9ef74ac91332.gif ), but I have five younger siblings who are all extremely hypermobile. All five can do both of the hand things shown in that second link (and often do, mostly to gross out strangers), and we all have double-jointed fingers. My youngest brother, who is 13 years old, is probably the most hypermobile of all of us. He can pop his shoulders back and clap his shoulder-blades together (I'm not joking, and the sound is quite odd). This became a problem when his PE class started doing push ups: when he went down for the first push up, his shoulders would pop out, and he wouldn't be able to push himself back up and he would be in a lot of pain. My mom took him to the doctor, who mentioned a genetic hypermobility syndrome, but we don't think she tested for it. The doctor put my brother into physical therapy to strengthen the muscles in his shoulder and back, but that was it. So being that EDS is genetic, I was wondering if you could tell me anything about how much it runs in families. If my brother has it, does that mean I would definitely have it? Or just have a higher chance of having it? With my joint pain and my family history of hypermobility, do I sound to you like someone with EDS? Thanks in advance, and I really appreciate anything you are able to tell me about this -- not only for myself, but for my brother as well, who is thinking about going out for football next fall, which seems like it might not be a good idea if he does have EDS. ~Ryot (who is also Sam IRL)
    Anonymous 42789 Replies
    • November 29, 2006
    • 10:05 PM
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  • Hi Ryot,Well if you have always been able to scratch your own back and reach places no else can (apart from your brothers) and are also hyper mobile in your fingers, then it looks as though you are part of the EDS club. Welcome!!!Anyway, let me not be presumptuous. Many people are hyper mobile and they are not classified as EDS because it isn’t causing them pain or physical activity problems (like those strong flimsy circus people). EDS sufferers are not strong and suffer a lot of pain, but people don’t take us seriously because they think of circus people and the gymnasts. By your description of your brothers they most certainly are EDS because of joints popping and causing pain. You don’t have to be hyper mobile to the extent of your brothers. The fact you can do the clasping hands behind back like in the pic you sited shows this effects your shoulders also. Are your legs banana shaped when you lock them back? I can do everything in the pics. Do you and your brothers have elastic skin to some degree? Like, can you pinch the skin in some areas of your body like the back of your hands and pull it up further then your friends. I have elastic skin tops of my legs, around my biceps (what’s left of them, lol) and the backs of my hands and on me feet. This is because EDS is a connective tissue disorder.You can still be EDS without extreme manifestations like shown my your brothers. Some EDS sufferers are only hyper mobile in their hands and suffer the often life threatening type called vascular EDS as it effects the internal organs that can collapse. There are six types, but there seems that some EDS have overlapping of the Types and sometimes it can be frustrating for us not fitting into clear diagnostic boxes (though some of us can pretzel into the literal kind).Football definitely is not a good choice of sport for EDS individuals. Some of us are able to do sports, but pay the price heavily later on.If you have joint pain you sound like EDS and not only hyper mobile. Not all family members will have EDS, but you sound like you are part of the club. What are your parents like? I have hardly any live family, and those still alive are not hyper mobile or can’t remember much about the physical state of my relatives. I have been told my grandfather was flexible but he was in pretty good shape till about 60. I on the other hand have suffered pain or sprains since nine onward and now I have BIG problems. Again, different levels of severity. Physical examination is usually done for the EDS Type III that sounds like you and your brothers, and not a genetic test. Genetic testing for Type III is still in the research stage and are hugely expensive. A rheumatologist is one who can diagnose hyper mobility, but not necessarily EDS. I have a rheumatologist who diagnosed me with hyper mobility but seemed at a lose when I spoke of muscle wasting. Please note, only a very few EDS suffer muscle wasting and that is what I am researching because I am one of the lucky few. I am discovering things and putting the puzzle pieces together to find out the cause and then possible treatment.If your family are really tall and skinny with long limbs look into Marfan’s syndrome also.All the best and it is great to here of someone showing such insight and concern over the possible future problems for both yourself and your brothers.You will find heaps of answers on the www.ehlers-danlos.org site and importantly - support.All the best.Agape,searchingsam.
    Anonymous 42789 Replies
    • November 29, 2006
    • 11:38 PM
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  • SearchingSam,Thanks for your reply! Talking with one of my sisters (I have two sisters and three brothers, all younger) about this the other day, we were comparing all the strange things we can do with our arms. I seem to be most hypermobile in my left shoulder -- while standing up and with my arm straight, I can put my left hand palm down on the table with my fingers pointing towards my left leg, without any feeling of stretching. I can twist a bit further so that my fingers are pointing to the right, so twisted about 270 degrees around. I can do the same with my right arm, but there's a feeling of stretching along the wrist, probably because of the tendonitis I had in my right wrist, elbow, and shoulder several years ago.I think my legs used to get "banana shaped" when I would lock my knees, but don't anymore because of the pain in my knees and hips. The all three of my brothers definitely get that shape to their legs, though. The hypermobility seems to be most pronounced in my youngest siblings, but we all seem to have a touch of it. I'm not sure how much skin elasticity is normal, but I can pinch a bit off the backs of my hands and feet, and I seem to remember my brothers being able to do strange things (usually at the dinner table, lol) with the skin around their jaw lines, but I'll have to ask them about it.My parents seem to be fairly normal, heh. They claim that they aren't particularly hypermobile, but I'm going to see how many of the odd things us kids can do they can do as well, when I visit at Christmas. My mom was a ballerina before my parents got married, but her flexibility has faded quite a bit in the 25+ years since she stopped dancing professionally.So having spoken with my parents and siblings about EDS, I think we're going to try to follow it up with my youngest brother's doctor and see what she says, especially in light of his wanting to go out for football next year. I'm going to bring it up with my rheumatologist as well and see what she says. I need to do more reading up on EDS, but from what I've read so far, I don't think the treatment of my joint pain would change much with an EDS diagnosis, but it would still be nice to know if this runs in the family.Thanks again for all the info on this -- I don't think I would have ever found EDS in my own research.~Ryot
    Anonymous 42789 Replies
    • December 2, 2006
    • 02:58 AM
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  • Wow!! Ryot.Though I had read your posting to the board, about being a 25 year old using a cane, before you asked me about EDS, I didn't realise it was you till today when reading some more of your posts to others; brain over load reading so much this past month. :-) .You definitely have a lot of complications. I will see what I can dig up over the next few days that might in any way help. Like with anyone else, EDS sufferers can also have other syndromes.Are you suffering muscle wasting? or feel you have never been able to put muscle mass on? I don't suppose they have done an GTT (glucose tolerance test) to see if you are insulin resistant. Or better still, an ITT (insulin tolerance test). I am just trying to dig up as much info about those with IR (Insulin resistance) as so many conditions are caused by this and it seems to also go hadn in hand with Growth hormone deficiencey and low insulin like growth factor -1 (IGF-1). The ITT has to be ordered by a endocrinologist.IR linked to muscle wasting syndromes or conditions; muscular dystrophy for example and whatever is happening to me. It is a conditon of diabetes, syndrome X, heaps of stuff.Deficiency in IGF-1 or GH in adult can have terrible effects on the body.I would really suggest you post to the EDS site also, you don't have to be diagnosed with EDS to be a member. You might be surprise with what others may have in common with you so you can have more to work with.By the way, if you do have a GTT, make sure you personally see the results and level readings. I was told my tests were normal; but when i decided to see for myself two weeks later I saw that it was not normal, but I still was insulin resistance and way over hte normal insulin levels in my blood system. That is one thing we all have to be warey of, being told things are normal when they aren't. We all owe it to ourselves to check out the readings for ourselves; check out any and all reports.Agape,searchingsam
    Anonymous 42789 Replies
    • December 2, 2006
    • 05:13 AM
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  • Hi again SearchingSam,Heh, yeah, I do have quite a bit going on with me, which seems to complicate the diagnosis process. At this point, I would settle for knowing the cause behind my joint pain. :PI haven't really noticed any muscle wasting or trouble putting on muscle mass, but then I've always been a fairly tiny person. I'm not quite 5'2", and about 115lbs. I danced and did a bit of gymnastics in high school and college, but I didn't do any sports. My doctors have noted in the past that I don't seem to have any muscle wasting, but I'm not entirely sure what they would base that on, anyway.I actually did have a GTT a few years ago, right before I was diagnosed with Hashimoto's. I move so often that I've always kept a copy of all my medical records. I had a one hour GTT that resulted in a 64 glucose, with 70 - 190 being normal. After that I had a five hour GTT, with these results:Fasting: 7730 minutes: 1531 hour: 1661.5 hours: 1512 hours: 1212.5 hours: 1153 hours: 85This test was done in September 03, and I haven't had one since. I was referred to a really good endocrinologist for these tests, and she tested for hypothyroid that same day, just in case. My TSH came back at 12.0, and that's how I got my Hashimoto's diagnosis. The hypoglycemia symptoms that originally sent me to the doctor went away eventually, and no doctor since has been worried about it. We did rule out any peripheral neuropathy as the cause of my joint pain, though.Thanks again for all your help and ideas. I'm definitely going to track down the EDS possibility, though given my symptoms and the complications of other conditions, I may need one of my brothers to get diagnosed with it first, heh. ~Ryot
    Anonymous 42789 Replies
    • December 3, 2006
    • 08:59 PM
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