Karen, I am sorry to hear about your son, I am sure this is very difficult to cope with, I have a 17 yr old son, who has severe bone pain, # 1 area is his back, his legs, hips, joints, ribs (sometimes breathing makes them hurt), shoulders, at times even his teeth hurt, basicly he has severe all over bone pain, hx of vertabre compression, avulsion hip fracture, some of his doctors say its mental, his pshyciatrist said to me (and my son) he is making it up for attention, needless to say my son was hurt about his comments, he wanted to cry!! I don't have this pain, but it hurts to see my teenage son on morphine and oxycodone every day just to get through the day, his pain is controlled but never pain free.  He has a vitamin D dificiency that took one year to normalize, he has had multiple studys.  His nuclear bone scan demonstrated degenatrive shoulders, clavicular, sternum, and joints.  The xray from the orthopedic showed weak and abnormal ribs. the reumatologist said he has fibromyalgia.  Any one out there with bone pain should have there vitamin d levels checked as well as calcium.  Currently I am trying to get the doctor to send hin for a bone biopsy (which was recommended a year ago and can not get it ordered yet) I was told a possibility of Osteomalacia for which the bone biopsy would be needed, but his doctors disagree, although he has every single symptom.  Just the thought of my son being on these types of medications makes me cry, Its not easy to see him take this just to be able to function day to day, other wise he is in severe severe pain.

Hello, I am now 21 and have the same exact symptoms. My doctors first thought it was Lupus and nOw my rhematologist specialist says fibromyalgia. I am in so much pain at this point in time. I have resorted to drinking when it gets unbearable. The pain can be anywhere but currently it is in my right shin. I am not sure what to do anymore. I have a vitamin d deficiency as well. I am finally over my anaemia. My specialist doesn't believe that it is lupus. Idk. I have polycyclic ovarian syndrome as well. Some days it so bad that I can't even move. I am at a stand still. I travel 2 hrs every 3 weeks and I get 0 updates. I am tired of being in pain. What should I do? Sincerely, C.F.

Im so sorry to hear that you have this pain!! AND, that you are so young! I know what its like to struggle EVERY day even just to get up, even just to comb your hair or bathe. I also started to drink more at one time.  BUT, alcohol often makes the pain worse!! So, because of this I stopped. Please search the internet for a pain management doctor or clinic #1. If you do not have insurance look online for the location of your state health dept. They will be able to direct you to a free or low cost clinic that you can go to that is supported with state taxes, etc for the needy.  Also, you may go to the ER. They must provide you with care, insurance or not... # 2 get your vitamin D up by taking a D3 supplement. Low levels of vit D can cause bone pain, loss, and low immunity. #3 go to the clinic you find and have them run the following tests:  RF, CRP, ESR, ANTI-CCP, ACE & a complete AUTOIMMUNE PROFILE INCLUDING ANA.  Autoimmune profile should consist of: anti-Ro, anti-La, anti- ssdna, anti- dsdna, and a few others.  ALSO run a CBC with Differential, Complete Metabolic Profile & Electrolyte Panel including Magnesium, potassium, Calcium, Sodium, Chloride &Phosphate. This will tell you or give you clues to what may be going on. The results of these blood tests will tell your doctor which direction to go from there. ALSO, make sure the doctor orders an MRI of the painful area. Good Luck! I feel for you, as I suffer as well..... For many, many years.... and its no way to live 😥

Hello there, I am a mom but I have the same pains that these people are going through and it sounds like your son is in  alot of PAIN medications and not any kind of preventative medications. I just wanted to make a suggestion to try Cannabis for the pain. You do NOT have to smoke it for it to work for him. I volunteer on a Cannabis Awareness website that I think you and your son would benefit from. www.420magazine.com Its a great place to start some education on how ot get your sons pain to go away without killing his insides with the chemicals that are all in the medications you get from pharmacutical companies. They are slowly killing our body while they pretend to fix us. Please look me up on the site if you get a chance to get there and read up on some stuff. Im known on there as BayAreaStoner. Im sorry for all your pain but Cannabis changed my life for the better and I think it would help yours sons greatly! Thanks for taking the time to read my comment! ~BAS~

hi Karen, anything come of a diagnosis yet? Email me as my son has severe pain finally figured out benign bone tumors but getting them out is another thing. Pain meds,etc. 

Hi my name is Joanne i also have chiari and leg pain most of the time it is when i am lying down i do not know what the cause is but you are not alone. chiari is a bad disease it steals ur life from u tremors headaches breathing problems neck pain heart problems loss of motor function thier are so many symptoms i could not possibly list them all but you are still young so keep up on ur treatments with a neruo and may be discuss surgery they took to long to diagnos me i suffered a bought 17 years be for a diagnosis now its permanent. all my symptoms so please! keep after doctors to give u the treatments u need

 

Everyone, I'm reading your posts, and truly feel for all of you.  I have been experiencing pain in my right knee for about three months now, that was progressive.  I have no health insurance (have a masters degree, with 20 years of experience, and I haven't found f/t work for six years.  So, no health insurance).  However, I did finally discover some free healthcare at our county clinic.  A doctor told me simply to "lose weight".  Granted, I am severely overweight right now.  And, because the pain was initially in the knee, apparently the bone, I thought that the combination of my weight and potentially arthritis was causing this pain, which typically started first thing in the morning.  Bones would be cracking, and walking down steps was painful.  However, this doctor didn't bother to take any X-rays to confirm if it wasn't something else.  It is now January, three months after seeing her, and I have been in increasingly debilitating pain.  The pain has moved to the back of my thigh, and particularly hurts in the nook of the back of my knee/inner thigh.  There are certain positions, even lying down, that absolutely kill me.  Just lifting my leg a certain way, at a certain angle, as well as bending my knee, KILLS the back of my knee and hamstrings.  It's very strange, and I can't sleep at night.  Yesterday it was feeling a little better, I ran an errand, I put something in the trunk of my car, and just bending over, at my waist, to push something to the back, I did something to my leg that made me scream in pain.  I could barely hobble all last night.  It has subsided only minimally this morning.

 

I have a doctor's appointment tomorrow (which I have been waiting for for TWO MONTHS), but I don't know if they're scheduling me for an x-ray.  I really want one, to know exactly what's going on.  I'm never going to find a job hobbling up to the interviewer.  I'm still trying to find what this brand of bone-and-severe muscle pain is.  It moves from the front of the knee (bone-like pain) to the back of the knee and thigh (feels more like muscular pain).  Any thoughts would be most welcome.

 

 

I wanted to add that there is also a type of thickness and slight numbness in the right leg, especially when I sit (I hope it's not diabetes).  I just don't know what it is.  If there is a clot, could the presence of that cause the slight numbing sensation?

Just wondering how you got on at the doctors yesterday?

Trish.

Thanks, Exhausted!

 

Actually, he was certain I didn't have any type of embellism or blood clot (which apparently was his specialty).  He wrote me an order to get X-rays, which I did immediately afterward at Good Sam in the Chicago area.  They'll send him the results tomorrow. 

 

One thing he did say was that if it was just arthritis, he would simply prescribe Ibuprofen, 600mg 3x/day, which he already had me start taking (and which I was taking before).  However, if he does find a fracture or worse, my surgery would not be covered at all by my healthcare assistance program....they don't cover any type of surgery (so much for healthcare in this country).  So, I would still have to pay thousands out of pocket, which I simply don't have.  He said that I could "wait until I find a job and get insurance" to have the surgery, if, indeed, I need it.  Yes...wait, just like I've been looking for the past SIX YEARS to find a job with benefits.  I have a masters degree, two degrees from the US and two from Europe, and twenty years of marketing experience, but I can't find a decent job here anymore. It's as if I'm on some blacklist, and I really don't know what I've done to deserve this.  I used to work a minimum of 16 hours per day for my career, always bringing work home, every night...and for what.  To get shut out now. 

 

Anyway, thank you so much for your note and your concern.

 

How are you feeling?

 

Patrice

Trish:

 

I mean he looked like a young Anthony Perkins!  (yes, of "Psyco" fame...that one).  He was very nice, but, I don't want any surgery.  I hope it's just arthritis, but the muscular pain at the back/hamstring area confounds me, and I know the x-rays aren't going to pick that up.

Sounds exactly like what I have been experiencing. Also when I sit down it is like the bone is splitting in two down my leg or I get little shocks. I work in sales, (party plan) and have noticed a lot of others lately tottering around when they stand up as well with joint stiffness.

This pain that I have been experiencing is chronic though. Hope I get some relief soon, as a matter of fact, I hope we all do.

Love Trish.

Trish:

 

I also wanted to add that he was a doll, and sort of looked like a young Anthony Hopkins!:)

Go back to doctor and DEMAND an XRAY & then an MRI WITH CONTRAST AND WITHOUT CONTRAST! Remember its your life! Take control of it! Research every test, every medicine, research your symptoms and make that doctor order the appropriate tests! Yes we all could probably lose some weight, but thats a lazy excuse! Dont walk out of that office until that doctor takes you seriously! Tell him he is insulting you and you want the proper tests done. If he ignores you or says its in your head, you are overweight, whatever, file a complaint with your STATE MEDICAL BOARD! Making these excuses and not ordering any tests is NEGLECT!! Doctors must check you for your symptoms, it is the law, it is part of thier scope of practice to be a doctor! IF NOBODY REPORTS BAD DOCTORS THEY CONTINUE TO PRACTICE AND HURT OTHER PEOPLE BY NEGLECT. THEY CANNOT BE PUNISHED IF THE MEDICAL BOARD DOES NOT KNOW OF THIER ACTIONS. Good luck 😊

thank you for that imformation,because that is exactly the problem I am having and its so maddening! I write questions to ask him and he ignores me,listens to my heart and out the door he goes! Iv'e had chronic back pain for years,but in the last 5-6 months horrible pain has been attacking my calves,it makes me cry.Pain pills are not even touching that pain.They just did the routine blood work tests and they came out fine,but thats not my problem,I want to know what is wrong with my "LEG'S". I'm afraid it might be ms or lupas or some other dibillitating disease.It sure is'nt like that phony Drs show where they act like they care,they have become actors.It's all about the "MONEY"..You are the only person I've ever heard about getting a mri with and without contrast.Iv'e had corstine shot's been on lyrica,gone to physical therapy and nothing work's.I'm starting to live like a hermit, because nothing is fun anymore.

Dear Exhausted:

 

I meant to give you a special shout-out.  I'm 49 as well, and our symptoms seem a bit similar....pain starting out in the knee, and then moving to the back.

 

If I hear anything new from my doctor tomorrow, I'll post it here.

 

Good Luck.

Thanks Patrice. I am convinced though that they know very little about it. One thing that has helped me to sleep at night is one of those velcro leg braces. It cradles the bad leg (in my case, the right leg) and is not so painful to move around in bed. The hospital gave it to me. (I am in Australia in Queensland and we have access to free hospital treatment if we can't afford insurance).

It protects it and gives it a good rest through the night.

Feel very sorry that you are having difficulty getting work. That adds insult to injury when you have this kind of injury and the chronic pain that accompanies it.

I am only able to work part time with it. I work for myself and my husband drives me to and from wherever I am working that day.

Hope things get better for us all.

 

Hi, do you have a diagnosis? My son is 22. Undiagnosed now 12+ yrs. Severe localized left knee bone pain and now 3 herniated discs ( @6 yrs). We live in No. California and all docs say yes its something but what and can only treat the symptoms which is excruiating knee pain. Tried epidurals, a no go. Now decompression which is working somewhat. He did nothing to cause all this.....

If you or anyone else have a clue or docs to see or anything helpful please email me..... Mom.....    tahoebeanies@hotmail.com     thankyou in advance!

Hello, mph.

 

Yes, I did finally get a diagnosis.  Apparently, I have "normal wear and tear" in my bones and some arthritis for a a 49-year-old.  I have to say, my extreme pain has somehow gone away, but it still hurts a little.  And, I'm often still stiff in my right leg.  I can't go down the stairs normally, walking as if I have a wooden right leg (I sometimes try to bend it and put my weight on it, as I do the other, but I find myself always pampering it, and that's not good).  I know I HAVE to lose weight, and I have started to do so, ever so slowly.  Where the extreme, debilitating came from a few months ago, lasting pretty much through the first half of January, I really don't know.  Perhaps I pulled a muscle on top of having the arthritis creeping up.  I'm grateful it feels better, but I'm definitely still worse than I was about a year ago.  I need to exercise more (but the last time I did regular exercise is when the bad pain came back in spades.  So, I need to watch that too).

 

I'm imagining swimming and regular massages would help it significantly; however, my health club has no pool, and I can't afford a masseuse of any kind...even the ones at the health club.  If I ever get a job, I might start going to another club that has a pool, and schedule a few massages now and then.  The rich really have no idea how lucky they are.  And in this country, they just keep getting wealthier, while the middle class has basically slid into poverty.  We really have no middle class any more.  I attribute MANY of our illnesses and pains to our work schedules, our low pay (even "white collar" middle class workers, as myself (professional, degreed, etc. are not making at all what we're worth.  Raises have been non-existent for droves of people), the stress that people carry from their jobs alone, let alone personal/family issues; and our very poor healthcare, and skyrocketing health care costs.  Have you ever seen a really wealthy person without a tan, without a regular massage, manicure, pedicure, hair appointment, without the ability to purchase healthy fruits and vegetables on a regular basis?  If you're wealthy, you're basically set on everything, including your "basic" health.  Yes, of course, the wealthy are not completely immune to cancer, alzheimers', etc.  However, they're certainly in a FAR, FAR better position to prevent all sorts of health problems that the middle and poverty classes can't...at all.  I can't even afford an eye appointment at this point, and my eyeset has definitely gotten worse in the past two years.