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?

[Lmitch9603]

A related discussion, Help was started.

[gymmom2014]

A related discussion, 17 year old suffering hip hands and back chronic pain was started.

[alwayshurting261]

A related discussion, any luck? was started.

[Mackeymackey]

Its like i wrote that myself im crying iv never heard of anyone else like me other than my sister im 22 please contact me 8607334165 mY name is amanda please text me

[CANDYGIRL1128]

A related discussion, Cronic upper shoulder grinding pain. was started.

[oneofthecrowd]

A related discussion, Been 8 months since the last join-pain posting was started.

[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.  

[JOncken]

I am a 32 year old female and feel like I have found a family! I have been dealing with pain since childhood but I chalked it up to the intense beating I did on my body as a competive gymnast for 12 years. The day that my 2nd child was born was the day that started this depressing story of mine that you can cut and paste from any of yours and have the same story. It is now starting to spread and I feel and sound like a box of rice crispies (snap,crackle pop!). I also have GI problems but I chalked that up to all the medications (I was a gynmast and we do a lot of "chalking" LOL). Anyway, I am going to tell my doctor about this website. He is my 3rd doctor and though he seems rough around the edges I truely believe he wants to help me feel better. Best of luck and prayers to everyone!

[new2curhelp]

It is so true that you all should be concerned of what your pain & mobility will be like in 10 years. I to have been suffering various points of pain from different injuries over the years. I have experienced relief then relapse twice as painful then before several times. It is difficult at 33 knowing that I only perform at 45%. I can say that a positive outlook, the RIGHT exercise, and prayer does help. It is like anything, it is what we make of it. The thing I would like to focus on is that power is in numbers so if we could only find the right doctor to syudy us and try to find the answer! Ladies, just know we are all NOT alone! If you don't feel well then stand up for yourself! Don't try to do what you know you will suffer for later or for days after! Just defend yourself to the right people and don't worry about the ones that are not there for you. My method has been using a correct size medical ball, 1lb hand weights, yoga mat & simple stretch DVD's that are designed for nonimpact. Try your best to keep what you have! Breath is important but don't keep yourself from using medication in the proper amount & dose. I have been relieved to read that these things I suffer have plauge others because it is so difficult to be alone in my suffering. I hate the fact that hearing others complaints make me feel some what better but it is true...we all love company! God bless you all & those of you 19 & 20ish try your best to stay strong & workout, stay ahead of it!  

[ccardin]

I recommend listening to the lecture available at the website (link) below:
http://www.ppnf.org/catalog/product_info.php?products_id=394&osCsid=3a0ac7a209cc78b2fcb119e6f5697820

I just finished listening to this lecture and it makes perfect sense to me that the majority of the cause(s) of joint issues are from nutrition, allergies, toxins and various other reasons. David Getoff provides valuable information on ways to find out what is causing this for you and how to rebuild your joint tissue.

A couple of things you might want to try is "Flex Now", cod liver oil, removing nightshade vegetables from your diet, introducing healthy fats such as raw milk, cream, butter, lard, etc. stay away from sugars and alcohol..  etc.

I'm adjusting my entire diet because my knees, ankles, wrists and fingers all pop consistently and my knee joints grind (uncomfortably) when I go up and down stairs. I'm only 32.

I wish you the best!

[MissComunikation]

I completely understand.  I'm almost 24, but I feel like I'm 65.  I hate to think about what I will feel like 10 years from now!  I've had the IBS symptoms almost my whole life but they heightened at age 14.

Massage Therapy, though it doesn't fix anything, does seem to calm things for a short period of time and make it more bearable.  Find one that specifically does fascia work.

How can they diagnose one joint as OA and say the others are something totally different?  Sometimes I feel like the doctors are more stumped than we are and are just guessing!

[Theorist]

I have been suffering from IBS-like symptoms for 2 years now. The joint problems started about the same time but have gotten a lot worse since then. Every joint in my body grinds and the pain is getting severe. When I move around in bed my joints pop and grind and the pain and discomfort drives me crazy. I have numbness in my hands and feet and my jaw hurts when I eat.The doctors said I have OA in my elbow but they don't know what is going on in the other joints. My ankles are almost to the point where I actually limp when I walk.

I am a 42 year-old male and I’m scared I’m going to be crippled. I am used to an active life style. I have been a weight trainer for 25 years-both power lifting ad bodybuilding. I wonder if the weight training destroyed my joints? I have friends who worked out and they don’t suffer from joint problems. I wouldn’t think weight training would affect my fingers and toes but I have it in those joints as well. I don’t know how much longer I can put up with this?

[MissComunikation]

Great website!

The website I looked at said that 50% of people with Lyme disease never had/noticed a rash AND that tests will most likely come back negative for lyme disease even if you have it because you have to have had the test right in the middle of it's "cycle."  Lots of false positives and false negatives.

I'm also researching Hemachomatosis as a possibility for these symptoms we're experiencing:

http://digestive.niddk.nih.gov/ddiseases/pubs/hemochromatosis/index.htm

[oneofthecrowd]

I wish it was gender-centric - only to narrow-down that as a factor, not to be misogynistic - but if we're all feeling similar things, I'm afraid it's not.  I'm a 37-year-old man.  I developed the joint pains 11 months ago seemingly overnight (or over a few days) and chalked it up to a cold-like virus or something (though I didn't feel sick in any way other than the pains).

I have no issues with muscles; just joints: elbows and shoulders more than anything but like others here, elsewhere in other joints too.  I have full strength in all muscles but the joints cause issues.

For the pain?  I take no pain relievers.  It's just something I have come to acknowledge in my day-to-day.  Plus, if the pain is never relieved, it's never coming back; that is to say: I prefer a constant pain rather than alleviating it and then feeling it intensify again later.  Some days, though it hurts at the 9 level of 1-10, I can almost forget it's abnormal to feel the pain.  I do take something, however:  Though I know it may not help some people, I take glucosamine and chondroitin, and tart-cherry powder in capsules.  I found that those help with the crunchiness and make my joints feel a bit more slippery, which helps with the pain but I'm more concerned with preventing damage than preventing pain.

Only 6 doctors for me thus far.  I still have the bone scan to do but all blood work is normal.  I'm not sure how x-rays can come back perfectly normal when we can feel - and sometimes hear - the crunch.  Very odd.

Lyme disease?  Certainly possible, though I do not recall any rashes (though perhaps they were on my back, my head, or so minor that I didn't notice).  However, yes, the symptoms for late-stage Lyme are very similar to what I am experiencing.  Lyme tests reveal nothing but I read someplace that the Lyme disease bacteria may actually be encapsulated in body proteins in a dormant state within the joints - not detected in blood but causing direct issues within the joints.  I don't know if pulling joint fluid out and testing that would reveal anything; I'm not a doctor.  Just thought I'd mention it.  I saw it here:

http://hbotoday.com/treatment/lymedisease.shtml

In the section titled: "Devastating Survival Tactic?"

Best wishes to all of you.

[timerouscat]

No, I did not have any gastrointestinal issues, but my pain too is getting worse.  I now can't sleep very well at night due to not being able to find a constant position without pain.  
Did anyone notice their pain intensify during or after pregnancy?  I find it interesting that we are all female and that is when my symptoms went on hyper-drive!
I have ANOTHER appointment with a back doctor and am scheduled for another X-ray, but am not very optomistic (I'm afraid of getting my hopes up that this one will be able tell me what is wrong.)  
I heard an ad for a Back Center, has anyone had any luck with one?  My pain has been in my L4, L5 discs, my hip joints which sends achey feelings down my legs.  I am now starting to feel the same in my shoulder blades and the joint popping/cruching is getting more pronounced.

[MissComunikation]

Do any of you suffer from gastrointestinal problems?  Bad stomach cramping and IBS-like symptoms?  Just curious if that might be related...

[MissComunikation]

It's been one year, almost to the date, since I began this forum...and still no change for the better.  I did find it very encouraging though to see that I'm not CRAZY like all the doctors would like to believe, and that other people are also experiencing these bizarre symptoms.

It has begun to "spread" to my hands and hips now.  My finger joints hurt when I'm using them in a repetitive manner for a period of time.  But they also hurt more when it rains or when cold weather sets in.  That last part goes for all of my joints!  Cold air definitely makes it worse.

I do go to a massage therapist now every three weeks or so.  It makes it more bearable but does not last or improve my condition.  The second I get off that table, I'm already starting to fall apart again!  I'm almost 24 now but my massage therapist describes the muscles in my neck/shoulders/back to be equivalent to those of a 55-year-old, stock exchange, business man who sits behind a desk at a computer all day!  Great, right!?

I have given up going to doctors, mostly because they have no idea what's going on, but also because I was without health insurance this past spring and summer.  That's when I started seeing a massage therapist and just paying out of pocket.  I will say that it keeps me from getting the the "Screaming Point" and would recommend it to someone to keep them sane for the time being.

I did have an orthopedic doctor who thought it might be myofascial pain, but he turned out to be wrong.  I do truly believe it's one of two things:

1)  A pinched nerve (hard to find, more easily fixed)

2)  Lyme's Disease (Check out the symptoms; I have SO many of them.  Unfortunately, very difficult to diagnose.)

Any success on y'all's end????  Please say yes!!!

[jess_80]

I have lower back pain as well and surprise surprise in the L4, L5.  I have been going to a pain management doctor for 3 years now.  I've had shots, pills, a procedure where they burn the disk back together, physical therapy, and a chiropractor (worst thing ever!).  Nothing really helped until a few months ago.  Just recently I had to switch doctors within the clinic because of schedule conflicts and the new doctor gave me the shots.  It was the worst shots I have ever had to endure yet and I didn't understand why it hurt so much more than every time before.  I couldn't move the next 2 days without being in extreme pain.  After that I felt almost immediate relief.  The only thing I can think is that finally the medicine from the shot went into the right area.  It actually lasted for a few months.  I'm now having pain again, but still nothing like before.  I'm going to go back and get more shots and pray he gets the right spots again!  

Now all my other joints crack, pop, and grind.  Occassionally it hurts but for the most part it feels good, which is not really a good thing.  I am beginning to worry though, because it is not good for a 28 year old to sound like an old person.  I'm thinking of going to a specialist for arthritis.

[java_thyme]

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