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Avatar universal

New to the board - Looking for answers to joint problems


I've been on a journey the last year to figure out what is wrong with me. What began as severe joint pain in my hands and wrists eventually moved to my hips and knees. I was convinced I had RA, but after seeing three different rheumatologists, I am still trying to find out what is wrong with me. I've had MRI's, bone scans, x-rays, and bloodwork to check for RA, gout, lupus, and other inflammatory diseases. Everything always comes back normal in my tests.

I completely changed my diet prior to seeing the first rheumatologist, and the joint pain got better. 8 months later, my joint pain is not much of a problem (although I can still feel pain). The real problem now is the excessive popping in my wrists, shoulders, and jaw. Just as the joint pain did, the popping started in my wrists, eventually moved to my shoulders, and is now in my jaw as well. I cannot do much of anything without the popping. I might point out that I have never had any swelling anywhere. But, the joint popping in my jaw has begun to make my jaw tight where I feel the need to grit my teeth. I'm very worried that my joints are simply wearing away. I haven't had an x-ray in several months, so I thinking about asking my current doctor to check specific joints. I saw a nutritionalist who did bloodwork to check for food intolerances. My results came back saying I needed to stay away from about 26 different foods including gluten, eggs, dairy, tomatoes among many others). I've done my best to follow that advice.

I am also thinking of trying to go to the Mayo Clinic although I don't really have the funds for it (flying from Texas to Minnesota and staying for weeks).

I'm just hoping that I can find out what is causing all these symptoms and then find the best way to deal with it. I'm doing everything I can from a diet standpoint (eating fruits, veggies, fish, nuts, and seeds), but I'm not getting much help from the doctors.

Any advice would be appreciated.
6 Responses
Avatar universal
Hello there! Sounds like you are having a rough time of it trying to remedy all of your ailments. I must say that I don't have any advice for you, I just wanted to let you know that you are not alone in your suffering. As soon as I turned 50, it seems like one diagnosis uncovers another, then another and so on. At least you are attempting to do positive things regarding your diet and lifestyle. I commend you on that! I hope you are able to make it to the Mayo clinic. Maybe you will find answers there. It's hard to express to the drs what your body is going through and get proper treatment. I wish you luck. Stay positive! Trixie
Avatar universal
Thanks trixie. I appreciate the response.
434278 tn?1324709825
If I could I would like to ask a few questions.  Does your joints turn red and swell and is there any disfiguring of the joints?  Keep your head up and stay positive.  That really does go a long way.  ~Kara
Avatar universal

I've never had swelling and they appear normal (no disfiguration). My hands do get warm at times when they are hurting. They also get ice cold at times in what I would consider normal room temperature at work (73-75 degrees). I had my thyroid and hormone levels checked, and those tests came back normal as well. The major issue I'm having at the moment is the popping in the wrists, shoulders, jaw, and neck (sometimes). Can inflammation causing popping?

I've been getting about 6 1/2 hours a sleep at night, so one thing I'm about to change is trying to get more rest.
434278 tn?1324709825
When your joints crackle, it signifies arthritis.  So that can indicate osteoarthritis, or anything else that affects the joints.  

One thing that you might want to ask for is a test for lymes.  Not just any est will do.  You need to get the IGENEX test for Lymes.  The IGENEX test for Lymes actually looks for the DNA under darkfield staining AND it looks for the three different forms of Borrelia (mycoplasma/cystic/spirochete) This bacteria is so advanced it has surface proteins that can "attach" the antibodies that your body is trying to produce, so they don't circulate in your blood. hence, no antibody titres.
Lymes Symptoms

GENERAL: fatigue, headaches, fevers, muscle aches/pain

BRAIN: weakness/paralysis of limbs, loss of reflexes, tingling sensations of the extremities, severe headaches, stiff neck, meningitis, cranial nerve involvement (eg. change in smell/taste; difficulty chewing, swallowing, or speaking; hoarseness; facial paralysis - Bell's palsy; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; chang in hearing; deviation of eyeball, drooping eyelid), stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes (memory problems, difficulty in word finding, confusion, decresed concentration, problems w/ numbers) and behavioral changes (depression, personality changes).

Other psychiatric manifestations have been reported including: panic attacks, disorientation, hallucinations, extreme agitation, impulsive violence, manic or obsessive behavior, paranoia, schiziphrenic-like states, dementia, and eating disorders. Some patients have committed suicide.

EYES: vision changes (including blindness, retinal damage, optic atrophy, red eye, conjunctivitis, "spots" before eyes, inflammation of various parts of the eye, pain, double vision.

SKIN: rash not at the bite site - This skin discoloration varies in size and shape; usually has rings of varying shades, but can be uniformly discorored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crsty/oozy).  The rash may develop a bull's-eye rash or target look. The shape may be circular, oval, triangular or a long-thin ragged line.

Other skin problems include: lymphocytoma (a benign nodule or tumor) and acrodermatitis chronica atrophicans (a discoloration/degeneration usually of the hands or feet).

HEART AND BLOOD VESSELS: Irregular beats, heart block, myocarditis, chest pain, vasculitis.

JOINTS: pain (intermittent or chronic, usually not symmetrical), sometimes w/ swelling, TMJ-like pain in jaw.

LIVER: mild liver function abnormalities

LUNGS: difficulty breathing, pneumonia

MUSCLE: pain, inflammation, cramps, loss of tone

STOMACH AND INTESTINES: nausea, vomiting, diarrhea, loss of appetite, anorexia

SPLEEN: tenderness, enlargement

PREGNANCY: miscarriage, premature birth, stillbirth, and neonatal deaths (rare).  
Avatar universal
I was tested for Lyme and came back negative. My joints are still popping and getting worse. My back is hurting more from it now. If anyone has experienced these issues and found help, please share.
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