Aa
Aa
A
A
A
Close
Avatar universal

Unknown cause of severe full body joint pain.

   I am a 16 year old male and have been having severe pain, aches, and morning stiffness in many joints. This started 2-3 years ago and I haven't had a day of relief since. My rheumatologist has already ruled out the possibly of an autoimmune disorder (RA). The affected body parts are;  entire spine, neck, shoulder blades, elbows, wrists, hands, fingers, hips, knees, ankles, and feet. I have had a lumbar MRI, which looked completely normal. Other symptoms that concern me most include numbness in limbs, frequent headaches and pain behind the eyes, my spine cracks (with pain) so easily that breathing causes it, a lot of neural tension, and extremely tender places on my hips, shoulder blades, and neck. Not sure if this is related but my hands and feet are always cold to the touch (even in my 75° weather) and have very poor circulation. Another more subtle symptom is I seem to lose a lot of hair on random limbs for no apparent reason. I have 5+ physical therapists, a neurosurgeon, multiple orthopedic surgeons, a chiropractor, and a rheumatologist. Neuro thought disc herniations, which the mri came back clean. Rheumatologist had no explanation at all. Orthos saw no signs of joint damage and refered me to my neurologist. Chiro said that I was his first patient that he couldn't adjust anywhere. Had a nerve conduction study on my left arm, which came back relatively low, but not significantly. My doctors have no idea what my problem is and have pretty much given up. They all just keep sending me to physical therapy after countless unsuccessful attempts.

I desperately need help and no one seems to know how. If anyone can recommend doctors to see or possible conditions that would be amazing. Also if anyone is experiencing something similar I would love to talk about how you might get relief/successful treatments.

I really appreciate all of who took the time to read this and hopefully respond!  
3 Responses
Sort by: Helpful Oldest Newest
20440546 tn?1497946292
Dont worry Steven. Natural therapies may help to relieve from RA. Rheumatoid arthritis is a type of chronic or long lasting disease which mainly affects the joints in the body. Here in this type, the immune system of the body causes the swelling in the joints.
According to Ayurveda, Superbeing's experts define rheumatoid arthritis is caused by an imbalance in the vata dosha. Unhealthy food habits for a prolonged period of time can cause weakening of the digestive system. This causes accumulation of toxins (ama), which causes the vata imbalance.
Ayurvedic therapies like Panchakarma helpful to relieve it.
Panchakarma defines a number of treatment methods, for the removal of toxins. This involves both internal and external medications and an ideal diet. In addition to the diet , the stimulating massages and manual therapies are very important in order to stimulate the metabolism and to assist in its detoxification.
Abhyanga (Body massage using medicated oil), Ilakkizhi (Herbal Hot pack), Podikkizhi (Herbal powder hot pack), Janu Basti (oil therapy), Njavarakizhi (Hot pack using njavara), Pizhichil (Rich oil massage) will help to cure inflammation and other related issues
Helpful - 0
Avatar universal
You are not alone!!! It is really frustrating having every symptom of arthritis/fibromyalgia but having it not show up on any test!!!
Separate from this, but I do want to add, I've had chronic migraines about 4x per week for the past 12 years.
I am a 22 year old female and 1 year ago, literally out of nowhere, I started having chest pains. It felt like I was having a heart attack! My heart area was so tender, I couldn't even lay on my left side. That day, I went to the ER. They did an EKG, X-Ray, Blood work, everything. The ER doctor said I probably have arthritis in my chest wall. To rule everything out, and because the chest pain was so severe, my PCP had me see a cardiologist to get more testing done. Every single test came back normal.
4 months later, it was like in an instant again, the pain spread into my entire body in the joints. My knees, ankles, hips, shoulders, jaw, elbows, wrists, and knuckles constantly hurt. 24/7. I began seeing a Rhumatologist who would only ever order the same bloodwork over and over and then tell me everything was normal and literally shoo me away. My sed rate (inflammation) was normal. The rheumatoid panel all came back normal.
Well the pain never stopped. I was prescribed Fentanyl because the pain was so bad everywhere, I literally couldn't get out of bed on my own or walk down or up the stairs. The Fentanyl eventually stopped working.
About 5 months later, I was hospitalized for severe lower abdominal/pelvis pain. I had every symptom of a kidney infection but nothing ever showed on any test. They took ultrasounds, cat scans, nothing ever showed. The pain while going to the bathroom has since gone away, but I'm still left with the nausea every single morning when I wake and the random abdominal pain.
I began seeing a Pain Management doctor who is wonderful! He's brilliant. He took me off the Fentanyl and put me on Percoset. He believes that I could be having a food allergy and if I'm eating something I'm allergic to, it's basically causing my body to attack itself, mostly the joints.
He had me cut out peanuts, meat, and more recently gluten. I cut gluten out about 2 weeks ago. Since cutting gluten out, and not changing anything else, I have gotten hives 6 times in the last 8 days. Benadryl and hydrocortisone don't help at all. HOWEVER, my migraines have completely gone away! The hives last about 5-7 hours before mostly going away. The only thing I've changed is cutting gluten out.
Okay so here's my theory... I still haven't exactly figured out what is wrong with me, what's causing this joint pain. But what if I was having some sort of autoimmune reaction causing the joint pain and it was being covered up by my body's own allergy to the gluten. Now that I've taken the gluten away, the autoimmune disorder is manifesting itself also through hives. I don't know. Just a theory.
I'm only 22 and I've spent over an entire year now being miserable 24/7. The Percoset does manage the pain enough so that I can move without help. But I don't understand why I have to live my life in pain and now HIVES!?
I am going to look into how to go to the doctors at Stanford for further testing.
Helpful - 0
547368 tn?1440541785
Sorry I am tardy to your post. I am even sorrier to hear about your body wide pain especially at your age.

I may be asking the obvious. Have you been tested for Lyme's Disease? There are two tests, and one isn't so accurate. It's also true that one should be retested as neither test is 100% all the time. Have they r/o (ruled out) all autoimmune diseases.

Rather than having random areas of hair growth on your body - is it possible the the opposite is true? You have patches of hair loss?

Have you had extensive testing on your thyroid? Again certain tests produce less than accurate results and retesting should be considered.

Have they tested your B12 levels?

Have they tested your hormone levels?

Have they tested you for mineral levels including gold and lead levels?

Are your oxygen levels normal? Fibromyalgia doesn't totally fit but has it been considered?

How do you know that your circulation is poor? What circulatory tests have you had? Having cold hands or feet does not always mean you have poor circulation. If indeed you do have a circulatory problem at 16 it bears extensive investigation.

Our bodies are complex. Exactly how all or systems work and work together can sometimes be a mystery. My husband was about your age when he developed similar SX (symptoms) to yours - through admittedly not as severe as you report. He has had multiple DX (diagnosis). Every time his SX worsen and he consults a new team of physicians his last DX is dismissed and he gets a new one. Three years ago they labeled him with Undifferentiated Systemic Inflammatory Disease. I can't even find that in my Medical Dictionary. I think it's a condition they half made up - as they had and have no answers.

Why am I telling you this? I want you to know you are not alone - and that medicine doesn't always have an answer. However I would think they can find a DX for you -  if you and they are persistent. It may just take awhile. Hang in there my young friend in pain. Don't give up.

I would suggest that you consult a new team of physicians at a totally different clinic. Physicians associated with a large teaching facility are often the best. You need one to look outside the box. Sometimes a new set of eyes can see something that others missed. However you may be limited by insurance coverage. Sadly that always has to be considered.

Please don't take what I say or anyone else says on the Internet as gospel. I can't and won't second guess physicians. View what I have to say only as food for thought. I'm certain your parents are loving and concerned. Their advice and guidance is much more important than any I could offer.

Don't lose faith! Try to stay active and positive - it helps all things. Don't stop living. See your friends.  Last but not least please let us know how you are doing. If you have additional questions feel free to ask.

Best of Luck my Young Friend,
~Tuck
Helpful - 0
Have an Answer?

You are reading content posted in the Rheumatoid Arthritis (RA) Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.