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Cynic
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/27/2008 11:00 PM (GMT -7)   
I have a little bit of a predicament in which I would appreciate some input for. Please help or offer advice if you can.

I have had joint pain for at least 2 years. At first, I had shooting pain for about a year that was all over my body, and was not connected to any one area. The joint pain started along with the shooting pain, originating out in my knees and ankles, then moving to my wrists, then basically spread everywhere. I wake up in the morning, and can't grip things until i pop both my wrists and all of my fingers. I also occasionally have numbed hands when i wake up. My joint pain has progressed to the point where I can't do a lot of walking, because my knees, ankles, and hips give out, get stuck, or just hurt too much. I can't run at all because my ankles seize up and get stuck in a bent position that hurts like hell. Squatting or kneeling so that my ankles are bent more than a little bit is absolutely horrible, because my ankles easily stick in that position so that I can't stand up but while I'm stuck in that position, it also is extremely painful. I am not able to be very active because of how my joints react, and have practically been forced to stop all athletics because of it.

I have to pop all of my joints every few hours, some more often than that, and when I mean all my joints, I mean my jaw, neck, back, shoulders, elbows, wrists fingers, hips, knees ankles and toes. I also have to sometimes pop the bones in my feet. I don't so much pop them because I can, but because if I don't, pressure builds up in them so that I eventually can't do things such as straighten my arm because my elbow has gotten stuck in a bent position.Some joints like my wrists, ankles, hips, and shoulders never stop popping, and before I do anything, I have to pop them because they become stuck extremely easily. Things like going up stairs or walking for long periods of times are nearly impossible most of the time.

I'm sure most of you are familiar with problems such as these, so I won't continue on, but I need a bit of help figuring out a couple of things. Firstly, I am under 18, and as most know, arthritis is extremely rare in minors. The thing that makes this more odd is the fact that the blood tests for Junior Arthritis came back negative. I'm assuming that's the same testing that is done for rheumatoid arthritis, or similar enough that they would notice if I had it. I have also been tested for Lyme disease, Rocky Mountain Spotted Fever, cancer, and other various diseases that could easily explain my pain. All tests have come back negative, and everything doctors normally check for in blood looks normal.

Since I'm a minor, my medical treatment plan rests in the hands of my parents, which is where I'm at a loss. My mother doesn't think doctors know anything, so after we got the main diseases I could have disproved, she won't take me to see anymore doctors. She's convinced that either it's my diet that is causing my problems or my exercise that is. My diet is not extremely healthy, but I eat better than most people I know, and as for my exercise activities, I am not really able to do much of anything with my joints as they are, but I get a decent amount of walking done between school and work. Before they progressed to be this bad, I did exercise quite a bit during sports. The joints were what caused me to stop those. Because both my diet and exercise plan don't seem to explain why my all of my joints are the way they are, I'm hoping you guys will have some suggestions for things I can research or get checked out for having.

So in addition to posting possible illnesses I could have, or just things I can look into, I would also appreciate any advice given on ways to decrease the pain or any generally useful advice you might have.

Thanks in advance.

Post Edited (Cynic) : 12/27/2008 11:05:36 PM (GMT-7)


Cynic
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/27/2008 11:08 PM (GMT -7)   
I have also noticed bruising on the joints in my toes, and sometimes around my knees, but I don't think I have swelling. Just occasional bruising.

Weather definitely affects how bad my joints are. Cold makes them pop more, while making the popping more painful.

koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 12/29/2008 3:05 PM (GMT -7)   
Cynic,
you should try and see a rhumetologist and ask about anklyosising spondilitis (my spelling is never right) its a form of arthritis that strikes mostly young people 20-30 or younger/ mostly men but women too. there are few test for it but you'll likely come out with a negative test for rhue. arthirtis. it took me 18 months and 2 general doc/ 3 ostopedic specialist and 3 rhuemetoligist later to get a positive diagnosis and a doctor who really cared to aggresively treat my condition. i'm now 29 yrs old and i took my parents not giving up on me to get me to go to so many doctors. don't give up with the first doctors who is not interested in your best well being. your your best advocate. unfortunately i can tell you some days/ weeks/ months may suck royally but it can get much better. i just started Enbrel and its a miracle. you'll find one of your own, soon i hope.
just dont give up.
ps don't feel too bad about asking for help. it's hard to do sometimes but it's essential to surviving some times.

ps. my AS started in one knee and progressed to both knees then both ankles then my neck and fingers. it almost completely skipped my spine which is what this form of Arthritis is know for messing up, go figure. that what part of what made the diagnosis take so long and hard.
good luck.
dont forget to ask a lot of questions.
tom

Cynic
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/29/2008 3:22 PM (GMT -7)   
Thanks for advice, but the problem isn't so much about me not wanting to go to doctors, but my mom. She believes in a lot of 'new age' stuff like energy, shakras, and fung shui, so she doesn't believe doctors know what they are talking about. It took a school nurse threatening her with medical neglection forms in order for her to let me go to a doctor. If I had my way, I'd be seeing numerous doctors, but it's her choice for the next few years. The doctor I did get to go to said I had depression, which was causing my shooting pain (this was before I had joint problems). That doesn't help my case much with my family, because now they have another reason not to get my problems looked at. The other thing my entire family believes is that I'm faking it. So before I can actually go to a doctor to get something looked at, I'm going to have to present some really good evidence that I have it and some really good evidence that I don't have other things my mom tries to blame my problems on.

But thanks for the suggestion, I'll look at that form of arthritis, and be sure to go to some doctors the first chance I get.

koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 12/29/2008 4:04 PM (GMT -7)   
there is a lot of alternative treaments out there for arthitis, i should know i tried more than a few with very little benefit. i tried different diets, excluded sugar, food dyes, fat, carbs, food allergeries, acupunture, about 2 dozen different herbal supplements and vitimans. i spent about a $1000 bucks on this stuff. the results were not fun. the diets/ pain caused me to lose more than 25 pounds and i'm skinnier than a chop stick to begin with. like it or not arthitis is at least partially caused by genetics and can't be fixed with alternative methods. it take good old fashion chemisty/ medications to modify your bodies immune responses.
why would you fake being in this kind of pain and as a result have to give up activiites you most likely enjoy doing. sorry thats just plain stupid of anyone to suggest. no one like the drug companies or traditional medical practice that much but sometimes it does work.
meds are backed up by years of testing, herbs are backed up by BS.

Cynic
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/29/2008 4:22 PM (GMT -7)   
Oh, how I know. I believe completely in science, but my mom's pretty much the opposite. She can't even let me get a diagnosis, because she says that even if i have something, she won't let me use the meds for it. But what the hell can I do? In a few years, I'll be able to go to the doctor myself and get it all figured out. I just hope it doesn't cost too much.

How much did all of the doctors and tests cost with insurance in the end?

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 12/29/2008 4:51 PM (GMT -7)   
Cynic, you didn't say how old you are, but I'm guessing 15-16? If so, you fall under the child protection laws still.

This is an extreme suggestion and I don't know if you'd even consider it. I'm only bringing it forward because I think you should know all of your options. You may be able to get help by calling your state protective service number and asking if they can help because you believe your medical care is being neglected. If you need help, talk to a trusted teacher or your school nurse or counselor.

Assuming you don't want to take such radical action, be aware that ibuprofen is a really superb drug for many arthritics and it is available over the counter. You can buy store brand cheaply. Or Naproxen (Aleve) is also good and only has to be taken twice a day. If you decide to take these, be sure you take them with food in your stomach as you can get stomach irritation if you take them on an empty stomach. And be sure you don't excede the dosage recommended on the box; even though they don't require a prescription, they can have serious effects if misused.

Good luck, and I hope you feel better soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Cynic
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/29/2008 5:07 PM (GMT -7)   
Yea, i sort of did the whole school nurse routine a few years ago. That got me one doctor visit. Even if I go to them again, my mom will just say that we are going to doctors (we kind of are, but they are all doctors that specialize in alternative medicine and don't diagnose anything), so technically, I don't think she'd be considered neglectful.

I have also tried Ibuprofen, but it doesn't help at all. I've gone 2 years with lots of pain. What's another few more? And if it gets bad enough that I have to go the hospital, my parents don't really have a choice, and I can take advantage of the situation and try and get them to diagnose me. Can't blame something that serious on faking it, right?

Thanks again for all the advice.

whatsup.downthere
New Member


Date Joined Dec 2008
Total Posts : 5
   Posted 12/30/2008 1:43 AM (GMT -7)   
idea Hey something you can try on your own is to stay away from night shade plants. they do cause pain, joint pain and possibly your other symptoms. They are considered poison and would not be allowed in our foods to be sold if added now to the list but since they are already in our food supply they are here. what are night shades? plants that grow at night potatoes, tomatoes, peppers, eggplant, and there are many others. Corn is a partial night shade plant. Corn is in so many of our foods now. China introduced it to us. along with a lot of other things that have been found to not be good for people. Corn syrup was added to our food supply after coconut syrup caused sever rashes and they took it out of the food supply. Corn syrup was then added, for decades now it has been added to increasing amounts of our foods as corn syrup, fructose, citric acid; yes citric acid made from corn syrup, to preserve food. not made from citrus fruit. It is widely used today. Could you be having reactions to it as well as the other full night shade plants. It is worth it to try decreasing it or eliminating it along with the full night shade foods and herbs you may be in contact with. We can check out our own environment, we can do this and solve problems that others don't seem to be able to .

Cynic
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/30/2008 2:05 AM (GMT -7)   
Yea..... we also tried that. Also didn't work. I went 3 weeks without any nightshade foods, then ate a lot. But I didn't see much of a reaction. We're still getting shots for it though, just in case that is what I'm allergic to. Hasn't seemed to be helping...

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 12/31/2008 8:40 AM (GMT -7)   
I can't believe your Mom wouldn't try anything to help you.  I can understand her adversity towards doctors and drugs, but if none of her natural cures are helping, it's time she puts her feelings aside and realizes that you need help.  No one should have to be in pain all the time and it's your life and your body and you should have a right to decide what's best for you.
 
I fought taking drugs for a very long time and Alleve twice a day was all that kept me going.  It took the edge off the pain but it got to the point where my hands were getting so deformed I could hardly do anything and the pain was unbearable in my knees and feet.   I have been on Humira injections since August and what a difference.  Unfortunately it can't undo the joint damage already done, but hopefully will halt further damage and the pain in my legs is all but gone most days.   I still have concerns about the Humira but it really comes down to quality of life.  You need to get a correct diagnosis from a good rheumatologist.   I will keep both you and your Mom in my prayers
 
God Bless
 
Alicat
psoriatic arthritis, peripheal artery disease


Cynic
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 1/1/2009 10:22 AM (GMT -7)   
thanks.


but does anyone remember how much they had to pay for all of the tests to get diagnosed?

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/1/2009 12:52 PM (GMT -7)   

Hi Cynic,

I'm so sorry to hear about what you are going through. I would be persistant with your mom to get her to take you to a rheumatologist - at least to find out what he/she has to say. Have you tried asking your alternative medicine doctor for a referral? Sometimes even the naturalists understand that that they can only do so much. While it is true that depression can cause a lot of severe physical pain, I don't think that is the problem and your mom should not dismiss the fact you are hurting so much.

Don't put a 100% faith in the tests - they don't always come back positive even when you do have a form of RA...getting the right medical doctor to help get you better with the right meds is more important. A good doctor will be able to help diagnose what your problem might be based on your symptoms. Even with the symptoms and problems, if it is early on, it may be hard to detect there is a problem. Trying different meds to find what works for you is often common as well.

If you have insurance, the tests are usually covered by it. In my case, I have a co-pay for the doctor's appointment, but any tests he orders are typically paid by the insurance.
 
Hang in there and good luck.
***
 


Cynic
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 1/1/2009 3:33 PM (GMT -7)   
Thanks again, everyone.


Another question I have:
Is arthritis always accompanied by inflammation in joints? Because, all of my joints are bad, yet none of them seem inflamed. Occasionally, they bruise, but they never look inflamed. Is that a sign that it isn't arthritis? or are there some types of arthritis that don't require inflammation?
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