Chronic Grinding Joint Pain

[MissComunikation]

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?

[Sunshine008]

Thanks Ms. Comunikation for updating all of us.  I am still hopeful that we'll figure this out, perhaps as a collective team of medhelp posters!  I'm glad you have docs you like and trust, that's 75% of the experience.  I'm anxious to hear about your follow up, so please do post.  I'm getting ready to start the anti-inflammation diet and hopefully that helps, at least with the other symptoms.  Have you tried taking Potassium?  I think I mentioned that before, but not sure.  Take a potassium supplement everyday and drink lot's of OJ.  See if that helps your joints. I  believe it helps mine, but overall I still swing into the hypermobile state...just not as severe as before I took the potassium.  Try it everyone...and post back.  One of my docs said low potassium can cause a shift in the inner cells and in turn cause the joints to loosen.  If he's right, he could bottle and sell that theory.  Anyway, I am a little better (joint wise) since starting it, so try it!  I'll keep you all posted on anything else I find out.  You're right, we need to stick together and try to solve this...using and sharing info from every doctor visit we have.  Hang in there friends!  Sunshine

[MissComunikation]

I'm sorry to hear your experience at Mayo was not successful.  I had wondered about going there.  It's been a while since I've updated as well.  A lot has happened...

Now seeing a Dr. Desai at the George Washington Pain Center.  He's really wonderful so far...didn't make me feel like it's all in my head or that I'm somehow depressed and that's what's causing the pain...HELLO!  Who wouldn't be slightly depressed BECAUSE of the pain, not the other way around.  It's not a "Chicken and the Egg" situation.

Dr. Desai has also comforted me by saying that "You're young and otherwise healthy besides your pain, so it's important that we get you fixed up and not just coping so that you can have a life."  AMEN!

He started me on Lyrica about 4 weeks ago.  There was no change, so he moved me up to the highest dosage.  I'm sad to say, still no change (just some awesome side effects...sarcasm).  I have a follow-up appointment with him on the 28th to see what the next step is.  He still thinks that it's Lyme's Disease, even though I've tested negative twice.  He said it's hard to catch it in it's cycle, and, since I have all the symptoms, we would be silly not to research it further.  At least now I can cross Lyrica off the list and, most likely, cross Fibromyalgia off as well - HUGE relief since I think that's a lame diagnosis.

To recap the past year though:

1)  Saw a nutritionist last Fall and found out I'm allergic to...well, everything!  So, now I'm on a gluten, wheat, dairy, soy, yeast-free (among other things) diet...very similar to anti-inflammatory diet.  IBS symptoms are TOTALLY gone as long as I stick to the diet.  So, that's my advice to those of you struggling with that.  Go find out what you're putting in your body that you shouldn't be!

2)  However, new diet didn't change the joint problem.  Still have chronic pain, dislocating/popping/grinding joints that make me want to scream sometimes, fatigue (though less fatigue now with better diet), swelling of joints - especially hands, rashes on hands, and butterfly rash on face that comes and goes.  I can now cross off "try new diet for joint condition" off my list.

2)  Have now had a full MRI of brain, neck, upper back, and mid back (basically everything from the shoulder blades on up).  Saw a neurologist at George Washington who ordered this and looked it over.  Said everything was normal and that he doesn't see any neurological problems either.  He's also awesome and the one who referred me to Dr. Desai.  I'm very grateful to have been passed on to such great doctors recently.  I was so fed up with the jerks who told me I'm wasting their time (not being figurative there...actually had a doctor tell me that).  Now check off "get MRI to check for pinched nerves, etc."  and "test for neurological conditions" from my list.

3)  So, that brings us to where we are at now.  Waiting.  So sorry that I can't tell you all that I've solved the problem.  But, I have crossed some things off the list and narrowed down the options.  I'm still getting massages.  Found this great place called Massage Envy where I can submit the bill to be covered by my insurance since they are a clinic and not a spa.  They have lots of locations across the USA...check them out!  Add to YOUR list "call Massage Envy today."  ;-)  I also recommend carrying around a travel-size bottle of Biofreeze (amazing stuff)...don't skimp on the off-brands - not the same...and also keep a travel bottle of Excedrin Back and Body (no caffeine so it doesn't make you jittery).  I ONLY take it when I'm desperate.  Save it for those "special occasions" so that it will have the best effect.

I will try and send a quick update after my follow-up appointment in a couple weeks.

I don't know what your pain scale is, but I know what it's like to live every day like this.  Maybe if we all keep researching, someone who figure this out and benefit the group as a whole.  Keeping you all in my prayers until then...

[posracing]

I know exactly how you feel. 40yrs. ex military{special ops} and after trips to the doc, him thinking I have arthritis. He suggested rehab.Went through rehab and started having stomach problems. Went to the gastrointuroligist. Complete fine and he was through. Started going to the chropractor and the first visit took x-ray. Found a slipped disc and a partially dislocated L hip.
The gastrointuroligist had x-rays taken but I was never told anything about my back. 4 months of chropractoric visits and disc is good, hip still causes problems. Hurt some, no near as much as before. Pain still in the lower back. Went to an othropedic Monday and after SNAPPING on this idiot, thought I was there trying to get painkillers. He says I have an SI injury. Off the the chiropractor today and then to another othropedic. He has something to do with the rehab I went to so I'm probably wasting time and money.
I DON'T  trust any of them anymore. willing to try just about anything to stop hurting and get back to doing the things i enjoy. Would have enjoyed snalling the 1st othropedics neck. Wearing a stupid bowtie, this is 2009 and I do live in Ga.
Anyway, I just want to get well!

   John

[Sunshine008]

Hi there.  Haven't checked back here since my original post.  Still having problems and whatever this is, is progressing, I'm sad to say.  I did go to Mayo in Aug. 08, and again in June 09.  The first visit they said I had Ehlers Danlos.  I didn't agree and the rheumy told me she was sure and to  get out of denial.  The second visit (follow up and worsening symtpoms), they said I do not have EDS after all, but they don't know what I have other than severe joint hypermobility and muscle problems (which were minor in the beginning, now severe).  UGH!  I'm so frustrated and so tired of being in pain.  And, to top it off, my 5 yr old son has always clicked and it has worried me.  Now he is complaining of some of the same symtpoms, saying his neck pops and that there are little "sprinkles" in his arms and legs.  HELP!  I'm so scared for him, now, and will try to figure out where to take him where they will beleive him.  I am going to try the anti-inflammation diet to see if that helps.  If it doesn't after 6 weeks...then I will try the gluten free diet. I've read about a lot of connection between hypermobility and gluten on gluten forums.  Try those...can't hurt. You can reach me at netti twenty two at yah-- ******* if you want to trade ideas and info.  Best wishes to all of you who posted.  Sorry you're in a similar boat!

[wizardwelder]

I as well have suffered these symptoms since about age 15, now 30, I too have been to doctor after doctor that told me it was in my head,  from my ankle to the top of my neck everything aches, and like many it feels centred to the back,  one person described it shooting into the arms and legs.  I feel as though it all starts with my spine, which apartently x rays say is fine.  I drink lots of milk, and try to eat good but at the levels which my pain gets, exersise is impossible, trying to get through average day at work is hard enough.  Its somewhat comforting that I'm not alone, and so many with the same symptoms, all starting out around the same age, proves to me that its not in my head, if and one has any help to suggest or want to talk more about this please feel free to get in touch wizardwelder at hotmail *******

[fibrofree]

I urge you all to read the book The Inflammation Free Diet Plan, written by one of the people behind Nutritiondata.com.  If you want the minutia, read Inflammation Nation.  

I had the symptoms described in this thread for a over decade.   I had to leave my teaching career, the pain got so bad.  I read these books, changed my eating habits and my exercise habits - more cardio - and by six months I felt well enough to stop the diet.  MISTAKE. It came back after about 8 weeks.

It's a life-long lifestyle change.  Read, understand, do it, and you'll feel much better in a few months.