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Chronic Grinding Joint Pain
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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?
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25 Comments
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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
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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
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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
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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
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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.
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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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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.
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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!!!
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Do any of you suffer from gastrointestinal problems?  Bad stomach cramping and IBS-like symptoms?  Just curious if that might be related...
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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 (achy) 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.
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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.
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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
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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?

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