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20-something suffering chronic joint pain, please help!

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Posted 5/5/2011 5:36 AM (GMT 0)
Hello all. I'm 23 years old and for the last three years I've been suffering chonic joint pain in my knees, anckles, toes, fingers, wrists, elobows, and left hip. The pain is usually a warm inflamed sensation, painful stiffness (with snap, crackle, and pop), or a feeling of weakness; usually a combination of all three. The pain is worst when I wake up in the morning and usually recedes slightly after a hot shower, but never goes away completely and returns several times throughout the day. I am in constant pain and can no longer run, jog, lift weights, push-ups, or any kind of physical activity that involves the joints.

In the last three years, I have seen at least five doctors (including 3 rhemetologists), done blood tests and x-rays, and no one has been able to give me a diagnoses. They have all for the most part ruled out Rhuremtoid arthritis because it does not show up on my blood tests, I dont have any visible swelling, and I dont have fever. I have been prescribed IBUProfen, Plaquenil, Meloxicam, and another steroid I can't remember. So far, nothing has had any effect. The only thing that does anything is Tramadol, which is a muscle relaxant pain killer and doesnt do anything for the joints but provides extremely temporary relief from the pain.

I am on here because I am extremely frustrated after dealing with this for so long, and for dealing with doctors who seem to just be stringing me along, prescribing me drugs to "test" in between doctor visits, and I feel like they just dont know and but wont admit it. I'm not looking for pity, but this pain has consumed every aspect of my life and I just don't know what to do. Doctors dont seem to be any help. If anyone has dealt with anything similar and/or has any ideas, it would be greatly appreciated.
Posted 5/5/2011 6:11 AM (GMT 0)
Hi TPH and Welcome!

I sure can see why you are frustrated! When you say 'joint pain' are you sure that it is actually IN the joints? Or could it be the muscle or ligaments that hold the joints together? I'm assuming that the tests you have taken show that your joints 'look' OK but you certainly know that there is pain there and lots of it.

The reason I'm asking is...have you or your doctors considered fibromyalgia? Fibro is amplified muscle pain but it's often feels like it's in the joints since muscles and ligaments hold those joints in place. Another interesting thing is that you have had test after test, especially with a rheumatologist, and still don't know what it is. That's totally common with fibro. NOW, I'm obviously not a doctor nor would I pretend that I can diagnose what is causing your pain, but I do think it would pay to see if it's what you have.

Here's some information on fibro plus a link to the Fibro 101 thread on our Fibro Forum. BTW, you'll see me over there often. Ya, I have had fibro for many years among other things so I can sympathize with that type of pain. If you don't think fibro sounds like what you are dealing with then possibly someone else here will share ideas that could lead to a diagnosis.

Hope some of these links are helpful,
Chutz

www.healingwell.com/community/default.aspx?f=24&m=1609914

www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp

www.diseaseaday.com/whole-body/fibromyalgia-chronic-pain-and-fatigue
Posted 5/5/2011 7:38 AM (GMT 0)
Hi, yes the problem with pain is that it is so hard to describe, but I'm certain it is in my joints. You are right though, the x-rays show that my joints look fine.

One doctor mentioned fibromyalgia, but said he didnt like that term because it is "controversial"within the medical community because I guess it cant be proved or something, and that once that term is used, a lot of doctors dont take the patient seriously.

Another doctor also mentioned it saying it WAS a real thing to take seriously, but like you said it shows up in muscles and ligaments, and not the joints.

Thanks for the help.
Posted 5/5/2011 7:53 AM (GMT 0)
I am not a doctor either, but I am wondering if you have been tested for gout? A lot of your symptoms dovetail well with it.
Posted 5/5/2011 6:30 PM (GMT 0)
I thought that as well, that it might be something like gout or lupus or lyme disease. I brough this up with my current doctor, who dismissed all of these for some reason. I have been blood tested, but I think you have to be specifically tested for them. But no, my doctor has not tested me for gout, but doesn't think it's that.
Posted 5/5/2011 9:13 PM (GMT 0)
"I am in constant pain and can no longer run, jog, lift weights, push-ups, or any kind of physical activity that involves the joints. "

that sounds harsh.

i am curious as to what exactly do you do all day?

I am in the same sinking boat as you so to speak, my 20s, joint pains, muscle aches...but I full well know now laying in bed or sitting up on the couch is thee worst thing for me
Posted 5/5/2011 9:57 PM (GMT 0)
Honestly, I really don't do much all day. I graduated college last year, and went to a semester of law school but I just couldn't concentrate on studying cause of the pain and I dropped out. I moved back in with my parents, and I really just sleep a lot and dont do too much. And I'll have a doctor's visit about once a month. I'm trying to find a job, but I really don't know what kind of job I can do, not just because of the physical pain, but the toll the pain takes mentally.

I'm not proud of it but I really just lie around all day, which especially sucks because I used to be very athletic running and going to the gym everyday.
Posted 5/5/2011 11:41 PM (GMT 0)
Has your doctor tested you for Polymyositis.  Along with my chronic knee pain I was diagnosed with that issue several years ago.  The symptoms sound very similar, joint and muscle pain, weakness swelling etc.  You may want to have that possibility checked out.  It is I learned the kind of issue that can flair up and then go away for a while and then reappear.  It can be made worse from stress but usually seems to have a mind of its own
Posted 5/6/2011 6:40 PM (GMT 0)
I don't think I have been, but I will ask at the next visit.
Posted 5/6/2011 10:04 PM (GMT 0)
Look up a Dr. that does Prolotherapy.  It is an injection therapy and has worked miracles for me.  Mine is sacroiliac joint dysfunction and tennis elbow.  Horrible back pain for 1 1/2 years - tried everything else - when I couldn't take it anymore I went to a pain clinic and was hooked up with a doc that does Prolotherapy.  Have just done 3rd injection and my pain has almost completely gone away.  I had about 50% pain reduction 2 weeks after the first injection!  Please check it out - I can't stand to see other people in so much pain.  Steroids and anti-inflammatories only impede our body's natural healing........ 
Posted 5/6/2011 11:05 PM (GMT 0)
@ TimeStyle: I try to describe the pain best I can, but it's so frustrating trying to find the exact words for it.


@ gottabefree: Thank you, I will bring this up at my next appointment. Do you have to continuously take the injections indefinitely to keep the pain away?

(I removed part of your reply to TimeStyle out of concern for your safety. We don't ask for nor give out personal information. It's one way we can all be safe. Thanks for understanding)

Post Edited By Moderator (Chutz) : 5/6/2011 5:40:27 PM (GMT-6)

Posted 5/7/2011 4:13 PM (GMT 0)
I must of missed something here? i thought it was me in trouble, I guess somebody is mocking me though..not cool.

anyway @ TPH, I would try the gym again. there is classes there that are low or no stress on the joints, like aqua aerobics, yoga, even swimming can be very beneficial to you from both a physical and mental standpoint. some insurances will cover the cost of aqua therapy sessions. it's better than any drug you can take. Plus, it is nice to get out of the house and have some social interaction.

if you're depressed or suffering from anxiety for instance, that can aggravate joint aches and pains. go see a counselor every three months or six months. clear your head a bit.

whatever is wrong, i know for a fact, laying around all day in a bed or cooped up in the house is never going to improve things mentally or physically. seek out some constructive things to do in order to take your mind off the the pain a bit.

hope you feel better. And good luck in trying to find a game plan for your future. Keep your head up.

Post Edited (archiestyles) : 5/7/2011 10:20:09 AM (GMT-6)

Posted 5/7/2011 7:01 PM (GMT 0)
@ archiestyles: I did do physical therapy for about four months to no avail after I started showing symptoms. I stopped doing it because I just wasnt seeing any results.

I continued to go to the gym to work out on my own, forcing myself through the pain (not the good kind of pain), but as of a few months ago I just stopped going because I just couldnt handle it anymore.
Posted 7/3/2012 7:35 PM (GMT 0)
This is so weird but Im 23 and have the exact symptoms you do. The doctors have also ran many tests on me and cant figure out whats wrong with me. I have also had to stop exercising because it hurts to bad. I am extremely stiff in the morning and after about two hours feel a little better. The pain does not stop though. It hurts in my neck, hands, feet, arms, elbows and knees. I take tramadol three times a day but it is not effective enough to manage the pain. The doctors have no idea whats wrong with me and make up another disease every time I'm there and tries a new medication each time which of course does not work. Its nice to see I'm not alone. I stopped hanging out with kids my own age because who could understand that I cant go out tonight because I hurt too bad. The pain gets worst and worst each year. I also get the cracks in my joints when i move so I know what your talking about. My neck is what cracks the most.
Posted 7/3/2012 8:33 PM (GMT 0)
Hello Jointshurt23! Welcome!

If you would do us a favor, and post an introduction of yourself on a separate post,…we would greatly appreciate it, and will be happy to welcome you there. You will get a much greater response this way, and many of the members would be happy to welcome you there. Also, please note, that this is an old thread, and the member who started this post is no longer active on this forum.

Take care, and if you need help and or have questions,…please feel free to let us know.

Thanks!

SE wink
Posted 7/4/2012 3:09 AM (GMT 0)
You could still possibly have RA. Many patients are sero-negative which means the RF is negative on bloodtests. Also, depending on when your symptoms started, you could have another form. I have JRA, which is the juvenile form. I was a kid when diagnosed, but they label it JRA if you are under 16(I think...). I know you said it was a few years ago, but if you think back further they may have been periods of unexplained pain or fevers. Especially if it started out as a milder form and has not progressed. OF course, it could be something else entirely, just thinking out loud... Even though I'm now in my 30's, dr still wants me to specify JRA and not RA since I have a ton of organ involvement which is a JRA hallmark.

Please keep pushing for answers. You know your body and you know how you feel. I know it is frustrating, but you need to fight now so you can get to feeling better. Take pictures if/when you joints look swollen or red. Without fail, when you go to the dr, the joints will look perfect. Keep a pain/symptom diary so you can show your dr what is going on. If you don't think your dr is listening, you may have to travel to find a new one. When I started getting organ involvement, my local dr referred me elsewhere. Now I drive 3hrs down to Duke. If you had asked me before would I drive that far for health care, I would have thought you were crazy. Now I do it a few times each month, but I couldn't ask for better care. When you have chronic pain, it's like entering a whole new world.

I hope you find pain relief and a diagnosis. The only thing more frustrating than having a chronic illness is not knowing what it is.
Posted 7/4/2012 6:21 AM (GMT 0)
@rocckyd and jointshurt23

Thanks for the replies, since I've posted this I've been seeing a new doctor, based on the tests he's run, he believes my condition is caused by Lyme Disease. So as of now I am treating with antibiotics (which havnt been working) for that.
Posted 7/6/2012 3:06 AM (GMT 0)
Tph it sounds just like me and I have fibrmyslgua and inflammatory arthritis. Tramadol and neurontin is what I take which doesn't help a lot. But u have my exact symptoms when mine started. Mine us worse now. If u have fibromyalgia too much exercise will hurt u but no exercise will also. U need yoga or something along those lines. I pray it gets better for u but honestly it seems mine is only getting worse.
Posted 7/15/2012 7:11 AM (GMT 0)
TPH2010, can I ask you what your diet is like? I may have a very good answer for you! I hope you reply ASAP because I think I can help you.
Posted 7/15/2012 9:03 AM (GMT 0)
@Reb23 Im a pretty pick eater, I eat a lot of carbs. I mostly eat pasta, pizzia (cheese-less), chinese food, BBQ, burgers, wings, sometimes trailmix, fried chicken, cereal, ect.
Posted 7/16/2012 10:25 AM (GMT 0)
Hey! Has anyone ever suggested you try a gluten free diet? It doesn't sound fun, but some people go for years with terrible symptoms such as yours never knowing that they were gluten intolerant. Gluten is a hard to digest protein that is found in most processed foods/ sauces, basically in most of the foods you describe! I'm not an expert but I'm telling you, if you want to get off those crappy meds that don't dO anything for you, please try this and at least see if this could be it!!! Hope you will, even doing it for a week alOne will tell u if that's it
Posted 7/16/2012 10:33 AM (GMT 0)
You will know by the symptoms lessening ALOT or completely subsiding. I meant to tell you, gluten is a ' wheat protein'. Just so you know there are many sources online that will tell you what you should eat if you are going gluten free
Posted 7/17/2012 9:14 PM (GMT 0)
TPH, of you want to chat over email let me know. I'm 23 yr old f also
Posted 7/18/2012 3:12 AM (GMT 0)
TPH…you really leave yourself wide open to spammers and all sort of other problems by posting your email address here on the forum….if you want to share it, then a better way is to add it to your profile and or meet the member you are interested in in the chat room and you can share it there.


SE
Posted 7/18/2012 1:08 PM (GMT 0)
FYI I'm not a spammer lol although it prob sounded like it
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