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Avatar universal

Chronic Grinding Joint Pain

I've had chronic pain for more than 3 years now. I fell asleep wrong in the car, woke up with a crick in my neck, and have been on a downward spiral since then.  I'm only 22 and appear to be in good health otherwise. I've seen 3 orthopaedic doctors, 2 chiropractors, 3 physical therapists, 1 neurologist, 1 pain specialist, and 2 internal medicine doctors. I've had x-rays and an MRI. I've tried ultram, vicodin, excedrin, tylenol, muscle relaxer, and herbs/vitamins. I am allergic to advil, so I can't try that. I have been tested for Rheumatoid Arthritis, Lupus, and rotator cuff injury...all negative. All of the doctors agree that I am EXCEPTIONALLY hypermobile. Besides that though, they throw up their hands and say they have no idea what's wrong with me.

My shoulders, shoulder blades, upper back, and neck joints constantly grind and slip out of place. I can crack them back, but they will slip again 5 seconds later. I have an undeniable compulsion 24/7 to twist and stretch and wiggle myself back into alignment.  I got worse after seeing the chiropractors. I think, since I'm so hypermobile and have such lax joints, that made the joint even LESS stable. It's like my ligaments/tendons are too loose to hold my joints together. I feel like I'm literally falling apart...

I'm in constant pain, stabbing, burning, grinding. Sometimes it feels like someone stuck a knife in between my joints and won't take it out. At this very moment, I feel like I want to rip my head off and set it back on the way it’s supposed to be!  I'm worse when I'm sitting for long periods of time (though nothing makes it better except lying on a heating pad, and even then it only subsides, not disappears). On the pain scale (0-10 with 10 being the worst), I'm never below a 6 and can hit a 9 on an exceptionally bad day.

I have yet to meet anyone else with these symptoms. I'm tired of trying to motivate my doctors to FIX ME! Not to mention, I don't know where else to go! I’m researching EDS, but I don’t feel like that is what I have (according to the list of symptoms).  I’m still going to go to a geneticist to check out the possibility though.  

Is there anyone out there experiencing the same symptoms as me?
29 Responses
Avatar universal
Oh My Gosh...You might be my medical twin -except I'm 44!  I could have written your post myself (except for the falling asleep in the car part) and until now, hadn't found anyone with issues like me.   I have all those symptoms...major laxity of joints that is progressive.  It started about three years ago after fertility treatment, after a jump into water from a cliff in Hawaii and after exposure to chemicals while we were having our house renovated.  The problem or trigger could be any of the three…or something else.  That makes the diagnosis even more difficult.  The docs have no idea and have given up.  I have had many, many mri’s, bone scans, blood work, emg’s (most of which are abnormal).  I also now have a low potassium problem that they don’t know the source of.  They see me getting worse (especially now that my cervical spine is bad and my throat cartilage is shifting and grinding making it hard to swallow.)  And, the pain...I can hardly take it anymore.  Now  it’s in every joint and pinching all the nerves.   I am planning a trip to Mayo in Feb or March 2008 - whenever I can get in.  I'm desperate.  My body feels like it is collapsing.  Docs say not EDS and I agree.  They are trying me on Enbrel.  After one month...no change and in fact I'm worse.  All my joints catch and crunch.  It's scary.  Really scary, in fact.

How can we get in touch with each other?  Will they let me post an email address?  Not sure of the rules.  babyhopes2004 at yahoo dot com  

Would love to share info and support each other.  No one can understand how this feels.  They all look at me like I'm crazy, even though the docs can dislocate my joints at will.  They just don't know what to say/do/think and simply keep saying "Mayo Clinic".  

I hope we can get in touch.  Where do you live - US?

Jeanette
Avatar universal
Both of your stories are so scarily similar to mine!  I have also done MRI's, X-rays, and have been told the pain is in my head. The doctors look at me like I am crazy or just trying to get pain meds!  My joints in my low back, hips, neck, ankles, and wrists ache almost constantly and I have the urge to "twist and pop"  almost always.  My husband calls me "Grandma" because I crack and pop so much and I am only 33!  
What do they do at the Mayo Clinic and where is it?
I too am getting more desperate.  I am scared, especially as the doctor's are baffled with my symptoms.  
I have been getting progessively worse and don't know where to turn.  I would love to get in touch with either of you.  My email address is ***@**** and I live in Pittsburgh.  
Alannah
Avatar universal
I have noisy joints since15, Before it did not bother, but now it became not so easy to move the shoulders,the spine gives the scaring noise,is not that fleaxible, gives pain and all the body joints sound. It really scares, the doctors can't say anything.I'm only 28! I'm now in Carlsbad resort(Karlovy Vary Czeck Republick) famous for curing such things with the special hot spring water, well, I can say while you sweem in that water and have the mssage it is better, but it comes back when you stope, looks like the only option is to moove here. Coming back to Finland soon where they normally offer the catellage replacement surgery, but not all peopele are brave enough to do it. Anybody have some successfill curing expirience?Elena. beachfronthouse at hotmail com
Avatar universal
Mine began around age 15 as well.  At the time I thought what I was feeling was normal back pain as I heard others complain their backs hurt, but as it did not go away I started to describe the pain, I thought it may not be normal.  It seemed to get worse after being on my feet for long periods of time or sitting for long periods as well. I have normal flexibility, and the cracking and popping sound from most major joints. During my pregnancy with my son the pain got worse and now is in my back, shoulder baldes, hips, ankles and wrists.  
I too have found that chiropractor care, warm water (hottubs), massage, and laying flat do help, but it is temporary.  The pain returns almost immediately, and this is no way to live.  I used to be extremely active, but now it hurts just to play with my son.  
Is the care you receive at the resort expensive?  
I am starting a diet rich in Omega-3's, fruit and veggies, and lots of water to see if this helps.  It can't hurt anyway.  
I did so research myself as the doctors can't seem to offer me anything except blank looks and anti-inflamitories (which don't work, I keep telling them it is in the joints, not the muscle) and I have come up with a combination of sacroiliac joint dysfunction and osteoarthritis.  I have an appt with another orthopedic surgeon, as the last one looked at my MRI for a total of 30 seconds before telling me there is nothing wrong with me and that it is in my head.  
Alannah
ataylor at meadowsgaming com
Avatar universal
I'm 25 and for 3 years I've been in acute chronic pain, in all my joints, predominantly my SI joint and t3 in my spine. Feels like I'm getting stabbed deep in the butt and between my shoulder blades, and then shoots out to my feet and my hands. Very painful, very depressing.

I started taking cymbalta last December and I'd say it's toned the pain down about 25%, and helped a bit with the depression.

After seeing a neurologist, 3 orthopedic surgeons, a rheumatologist, chiropractor, an osteopath, accunpcturist, and many physical therapists and massage therapists, I too decided to go to the Mayo Clinic. 3 MRI scans, many x-rays, an EMG, cat scan, bone scan, and discogram all read perfectly normal. I tried the chiropractor for a while year, and, at times, I felt like it made my symptoms worse. The only thing that remotely helped was accupuncture, but for a day or two at most.

Finally, I decided to go to the Mayo Clinic, since they are famous for diagnosing the undiagnosable. After seeing 3 doctors there they came up with "chronic myofascial pain syndrome." Here is a link for more info:

http://www.uspharmacist.com/oldformat.asp?url=newlook/files/feat/chronicpain.htm

They said to find a specific pain clinic in California, where I live, and that a combination of particular drugs and rehabilitative therapy could possibly take care of more of the pain. They said its unlikely that I'll ever be completely out of pain, which is a bit depressing. But maybe I'll come back to this forum if I find treatment that works.
Avatar universal
Hello! Late last night I came across this site while attempting to look up pain. I forget now exactly what I put in the search, regardless it landed me here. I read your posts and started to cry. One reason, I hate to see people in chronic pan. I understand that aspect 99%. The other 1% is I'm not in each of your shoes to know exactly what pain it is you are feeling. But, pain is pain, moderate or severe. The other part of  reason I cried is because when I read the posts, I felt like someone took over my body and wrote for me. I was elated to read there are others with the same pain I have and unable to get answers. Not happy you have pain,but I think you understand what it is I'm trying to say?

I slipped on ice 4 yrs ago. I didn't go all the way down, but did the dance move to keep from falling. Ever since I have been in chronic pain, and it's only getting worse instead of better. I have tried so many different medication, injections etc. I had an appointment at the "pain clinic" here today, they again tweeked my meds a bit. All I can do is let them, as they can't seem to figure out why I'm in so much pain. I have moderate DD, a small bulge in a disk, and Sacroiliac Joint Dysfunction.  The effected discs are L4, L5 and S1. The typical for low back pain. It's frustrating living with this day and and day out. My friends and family try to understand, but I have told them the only way they are going to fully understand what it is I go through day to day is to have the pain themselves. No, I don't wish this pain on anyone, but sometimes I wish my family and friends could live with this for just one day.  

Please let me know if you find anything new. I'm going to look up the myofascial a bit. See what I can find out.

Warm & well wishes to you

Jen

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