Anybody know what this could be?

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jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 8/5/2016 8:14 AM (GMT -7)   
Hi everyone,

So I'd really appreciate any assistance here, because I am kind of lost as to finding a diagnosis, and doctors really aren't helping me much. Apologies for the long post, but I have a complicated history.

Firstly, here is my background:

-Male
-26 years old
-Have never smoked, don't drink much and am not overweight.
-Only other illness: pretty severe acid reflux disease for about 10 years.
-Only medication I have been on is for that, Nexium.

And here is a description of my joint problems:

-Very first time I noticed something unusual in my joints, was at about 16 years old - If I played tennis more than, say, twice in a week I would notice the ring finger in my right hand would catch a little bit (trigger finger is what it is called I believe). But it would go away with rest, and never had any redness or swelling.
-Then, aged 22 I started a fairly intensive manual labor job for 2 years. Only problems I noticed during the job was a little bit of stiffness involving my fingers after work each day, but nothing too much.
-about a month after I finished job, I noticed all of my fingers on both hands would get sore if I used them too much (a couple of them catching like trigger finger). But never any swelling or redness, and after resting a few days the pain and stiffness would largely go.
-A few months later I tore cartilage in my right wrist lifting weights. No redness or swelling.
-A few months later I noticed my right ankle (seemingly somewhere in the joint) was a little sore. But I couldn't identify any cause of it. After a few days the pain went away. But anytime I do something like kick a soccer ball, the pain in the same spot comes back a little. No redness or swelling ever and avoiding those activities always removes pain.
-A few months later I noticed my left elbow was clicking (without pain) when it never did before. It also has a mild crepitus sensation when I contract it fully. Never any pain, redness or swelling.
-A few months later I noticed both my shoulders were clicking in ways they didn't before. And a week ago my right shoulder clicked rather loudly, and it was followed by pain for a few days, and now my shoulder clicks even more and feels a little unstable. Couple of days later, exact same thing happens to my left shoulder. So now I have two unstable feeling shoulders that click a lot (with a little pain). Never any redness or swelling, and no cause I can identify. Ultrasound and XRay showed normal joints, with a tentative diagnosis of impingement - however, on reading a little more I think there is a high probability I have somehow torn the cartilage in both shoulders (because my symptoms match exactly to a SLAP tear).

So, in summary, the following joints of my body are currently affected, and seemingly all permanently:

-All of my fingers
-Right wrist (permanent cartilage injury)
-Right ankle
-Left elbow
-Both shoulders

I have had about 4 or 5 blood tests for the spectrum of autoimmune diseases over the past year or two - absolutely nothing showing. My blood work has always been perfect.

But here I am left wondering what on Earth is going on my with my body. I'm 26 and in good shape, yet most of my main joints now seemingly have some kind of permanent arthritis. What is confusing to me is the arthritis acts like osteoarthritis in that there has been no signs of inflammation and gets worse with use, but at the same time surely I am too young for something like osteoarthritis? And surely my joint problems are too widespread for osteoarthritis? But on the other side of coin, some kind of autoimmune arthritis would fit my demographic better and explain why it is so systemic, but I have had no signs of inflammation or positive blood tests?

Can anyone shed any light on this?

Thank you so much

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2082
   Posted 8/5/2016 9:54 PM (GMT -7)   
Hello jonnoboyd and welcome to the HW forum!
I have a suggestion for you if you can get your PC doc to cooperate on a referral. It sounds like your shoulders are the most immediate and painful problem. I wasn't much older than you and active like you when my shoulders started having problems. If you have a propensity to issues with your shoulders, or you have poor body mechanics, your not too young. The clicking could very well indicate a tendon issue, and it will take an MRI to determine. If you get a referral to an orthopedic specialist, you will likely get another x Ray, physical therapy (to correct body mechanics, and an MRI if needed.
Good luck and let us know how you fare.
Beth

jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 8/5/2016 10:06 PM (GMT -7)   
Hi Beth, thanks for the reply.

I am trying to get an appointment with an orthopedic specialist because I agree I do need that MRI (my rheumatologist refused to refer me one!). What I guess I'm mostly concerned about here, is not so much the individual joints like the shoulders, but if they are part of some bigger picture. Because it seems incredibly coincidental to me I've had so many issues (even if somewhat minor) with so many of my joints now. Do you know if it's possible for early stage rheumatoid arthritis to present like my problems have - i.e. only pain on overuse, no redness, swelling or hot joints, and negative for all blood factors?

I've read a lot of early stage rheumatoid arthritis stories, and it seems a lot of them don't have positive blood work, but most do seem to have some element of visible joint inflammation (like redness, or hot joints or swelling). So I guess that is the baffling part to me, because it seems too systemic to be osteoarthritis.

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 1046
   Posted 8/6/2016 8:18 PM (GMT -7)   
Hi jonnoboyd
No You are Not too Young , sounds like you are doing the right thing by researching as much as you can.
Before I start I would suggest you get a 2nd opinion from another Rheumatologist because he should Not refuse you an MRI he is supposed to be Diagnosing you.
I had some Very Bad experiences with what I consider Less than helpful Rheumatologists in the early days. .( my RF was always High but I did Not have redness or swelling so he decided it was not RA but this was latter proven to not be the case and I was diagnosed by a very Nice Rheumatologist with to have had RA all along)

you need to get blood test for ESR , CRP (for inflammation) and RF (rheumatoid Factor) Now just to confuse things You can have a negative result in the RF and Still have RA so this is why you repeat the test at a different time.

with me it was stages from childhood I would go thru from about age 8 id have sore arms & legs and be like I had a flu this would last a few weeks then go away , then late teens I had what they called a physical breakdown where I collapsed and was in bed for 3 weeks then recovered till early 20's when I had again a mystery illness & Glandular Fever this lasted about 3 months but I Never fully recovered and if I did any physical work it took Days to recover, till I was about 28 when it became Full on Never going into "remission" when I was diagnosed RA, then latter in 30's they added Fibromyalgia as well So it can come & go at first and the clicking sounds as Beth said like Tendons so Fibromyalgia could be an issue But you Need an MRI.

unfortunately all you can do is persevere keep a diary of what happens and what triggers your pain and take this to the specialists with you
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

Post Edited (BadDay) : 8/6/2016 10:20:48 PM (GMT-6)


jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 8/7/2016 1:34 AM (GMT -7)   
Hi BadDay, yeah I've seemingly never had 'flare ups' - or at least, if I have had them they have been so insidious I've never ever noticed. All I have noticed is that a lot of my joints now seemingly have some kind of arthritis in them where pain is worse after overuse, and bettered by rest. I have had 4 or 5 blood test for all rheumatoid factors (ESR, RF, CRP, antibodies etc.) over a period of about a year and a half, but never even the slightest thing wrong. Do you think given that, it's very unlikely (or maybe even impossible) I have rheumatoid arthritis?

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 8/7/2016 11:57 PM (GMT -7)   
Hi Jonnoboyd:

Welcome!! Sorry to hear of your joint issues.

As you probably know from your great research, there are over 100 types of Arthritis.
We are not medical profs and don't see your test results, so we just try to guide a person
through research and our own experiences, not diagnose.

From what you have written(excellent work), you probably do not have RA(IMO). It may be
wear and tear or injury from sports(weight lifting,etc)/intensive manual work, as you mentioned
possibly resulting in OA. You could have another condition, of course. Does any of your family members have OA or similar symptoms that they have mentioned??

After being dxd. with severe RA at 24, I pushed through years of pain and inflammation raising my little ones, my Hubby and the pets plus doing much of the household work and social activities. I was
always low to normal weight. I wasn't nice to my joints usually, so I ended up with Osteoarthritis at around age 46. Mind you, My Dad had RA at 68 and my Mom has OA since about age 72, so I probably would have gotten OA anyways. I mean not to offend others but I think I'd do much better with Osteoarthritis than RA.

"Rheumatoid arthritis (RA) is a systemic autoimmune disease whose main characteristic
is persistent joint inflammation that results in joint damage and loss of function."

http://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/in-depth/difference-between-rheumatoid-arthritis-and-osteoarthritis/art-20091920

"An estimated 27 million Americans age 25 and older have osteoarthritis. Although osteoarthritis becomes more common with age, younger people can develop it, usually as the result of a joint injury, a joint malformation, or a genetic defect in joint cartilage. Before age 45, more men than women have osteoarthritis; after age 45, it is more common in women. It is also more likely to occur in people who are overweight and in those with jobs that stress particular joints.

The Warning Signs of Osteoarthritis

• Stiffness in a joint after getting out of bed or sitting for a long time
• Swelling in one or more joints
• Crunching feeling or the sound of bone rubbing on bone

about a third of people whose x rays show evidence of osteoarthritis report pain or other symptoms. For those who experience steady or intermittent pain, it is typically aggravated by activity and relieved by rest.

If you feel hot or your skin turns red, or if your joint pain is accompanied by other symptoms such as a rash or fevers, you probably do not have osteoarthritis."

http://www.niams.nih.gov/health_info/osteoarthritis/#osteoarthritis

Hopefully you will find your answers at the Orthopedic Specialist. Please let us know how that goes.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 8/8/2016 1:27:56 AM (GMT-6)


jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 8/8/2016 2:46 AM (GMT -7)   
Hi msOuchie, thanks so much for the detailed response. Yeah my symptoms really correspond to osteoarthritis, but they are so systemic now which is why I'm confused - and as far as I'm aware my shoulders have never even been used extensively! They really shouldn't have any wear and tear. Do you know if it's common for RA to result in proper tears of the cartilage as one of the first effects, without any real warning signs?

Sorry to hear about your own struggles

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 8/8/2016 9:33 PM (GMT -7)   
YW Jonnoboyd:

A person doesn't need to have arthritis to get a tear in the cartilage. Healthy athletic people get them often from overuse along with people who have unhealthy joints and elderly people with poor circulation.

Coincidently, I was dxd. with a Torn Rotary Cuff in my left shoulder earlier this year. As normal, I would continually reach over with my left arm to pull the seat belt over me, to lock it. This action(and other repetitive actions) was painful since I've had RA in both shoulders for many years. The last time, there was a severe pain and that was that. I did have the creepy crepitus in my shoulder also.

Several factors contribute to degenerative, or chronic, rotator cuff tears.

"Repetitive stress. Repeating the same shoulder motions again and again can stress your rotator cuff muscles and tendons. Baseball, tennis, rowing, and weightlifting are examples of sports activities that can put you at risk for overuse tears. Many jobs and routine chores can cause overuse tears, as well.
Lack of blood supply. As we get older, the blood supply in our rotator cuff tendons lessens. Without a good blood supply, the body's natural ability to repair tendon damage is impaired. This can ultimately lead to a tendon tear.
Bone spurs. As we age, bone spurs (bone overgrowth) often develop on the underside of the acromion bone. When we lift our arms, the spurs rub on the rotator cuff tendon. This condition is called shoulder impingement, and over time will weaken the tendon and make it more likely to tear."

Risk Factors

"Because most rotator cuff tears are largely caused by the normal wear and tear that goes along with aging, people over 40 are at greater risk.

People who do repetitive lifting or overhead activities are also at risk for rotator cuff tears. Athletes are especially vulnerable to overuse tears, particularly tennis players and baseball pitchers. Painters, carpenters, and others who do overhead work also have a greater chance for tears.

Although overuse tears caused by sports activity or overhead work also occur in younger people, most tears in young adults are caused by a traumatic injury, like a fall."

http://orthoinfo.aaos.org/topic.cfm?topic=a00064

I mentioned your hand situation to my daughter and she reminded me of her experience. about 4 years ago when she was your age, she had a job that involved continual fast work with her hands. She complained to me about how painful they were. Of course being a Mom with RA, I was concerned and I got her into my Rheumy. He did the examination of her hands, etc. She had an MRI and thankfully she doesn't have RA(touch wood). Her hands were fine again , 4 months after quitting that job.

No, I've never heard of cartilage tears as one of the first effects of early RA.

RA = inflammation.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 8/9/2016 1:34 AM (GMT -7)   
Thanks again for the info msOuchie. I went to a physio today and he seems to think it could be impingement, but not ruling out labral tears too. Apparently i have type two acromion shoulder joints, which are a genetic variation that apparently predispose you to getting rotator cuff tears etc.

I'm still gonna get an MRI done though, so I'll keep posting updates, but it might take a while.

CA-Lynn
Regular Member


Date Joined Jul 2016
Total Posts : 24
   Posted 8/9/2016 11:45 AM (GMT -7)   
And then you have 20+ year veterans of seronegative RA.

I also have OA, DDD, PsA.....and the list goes on and on.

My best advice: get the best possible rheumatologist. Sometimes there is nothing in the bloodwork to inspire a diagnosis....but often an MRI will tell the story.

Good luck.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 8/9/2016 10:24 PM (GMT -7)   
That always frustrates me when I hear that another life has been predisposed by their genes in one way or another. It's so unfair. Well, at least you are seeing a physical therapist and you know that your tests are negative. I wish that had happened to me when I was young also. I'm very glad that you do not have RA. Yes, I know that an impingement or torn rotary cuff is not a happy place either. Hopefully that MRI will tell the tale, as CA-Lynne said. Be good to yourself and perhaps soon we'll hear from you.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 8/9/2016 11:06 PM (GMT -7)   
CA-Lynn, I'm assuming you are referring to yourself when you say 20 year seronegative veterans? Do you remember how your RA symptoms started? Was there redness or swelling?

jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 9/22/2016 3:45 AM (GMT -7)   
So just wanting to keep updating here, just in case anybody finds it of use. So I've just had a contrast MRI done of my right shoulder and right hand, and some bad news unfortunately. Apparently I have a near-full thickness tear in my supraspinatus shoulder tendon, which according to my rheumatologist will probably require surgery (so going to see a shoulder surgeon about that). But, worse news than that...the MRI of my hand shows some bone erosions in the carpal bones. My rheumatologist still seems to think rheumatoid arthritis is unlikely, but honestly given how widespread my joint problems are and how erosions are a common sign of rheumatoid arthritis I don't see what else it could be at this stage. Anybody have any ideas or thoughts?

constantpain
Regular Member


Date Joined Mar 2013
Total Posts : 36
   Posted 9/22/2016 10:39 AM (GMT -7)   
If your still unsure about not having or not having Rheumatoid Arthritis. Theres and anti-ccp test that is used for people like you. Its a definite for Rheumatoid arthritis and can be found in people years before they have it. My RF was high and then with medicine it became normal but my ccp was still high. The Dr. told me they would never have to repeat this test, its such an accurate test for Rheumatoid Arthritis. The ESR and CRP has always been normal for me and I have those tests done every month due to the medications I am on, Sulfasalazine and plaquenil. Hope this may help you some if your still worried ask about the anti-ccp test. Its bloodwork also.

jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 9/26/2016 9:24 PM (GMT -7)   
So some more news to report, and it makes me a little more confused again - would appreciate some opinions actually. I got back some blood results - which tested for literally everything (CCP, RF, genetic HLA-B27 etc. etc. etc.) which were all 100% normal. Also had x-rays of my chest, hands, feet and elbows - all 100% normal.

Clinically all I know is there are bone erosions (ONLY shown on MRI) in my wrist. All I can find when I search for bone erosions is 'rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis' again and again and again - and most say early wrist involvement is common, and only detected with MRI. And yet, every other marker for inflammatory arthritis is absent??? So I'm confused to say the least....especially about my decision to take drugs for this or not, because I know the drugs aren't to be taken lightly.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/27/2016 2:45 PM (GMT -7)   
You could be like me and be sero-negative RA. Blood work says no, but xrays say yes.

I take plaquinel and Leflunomide for my arthritis.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

CA-Lynn
Regular Member


Date Joined Jul 2016
Total Posts : 24
   Posted 9/27/2016 4:34 PM (GMT -7)   
Sorry - I don't come to this site very often. Appears I was asked how my symptoms started.

Let me preface by saying this: none of us start the same way.

In my case I woke up one morning and my left knee was so swollen it was locked. I wasn't sick but had a friend who was an endocrinologist who got me into an orth surgeon. He aspirated fluid from my knee, sent it to a specialized lab, and it came back as CPPD [pseudogout]. Later we would learn that this could masquerade as RA.

The key here is to get the best possible rheumatologist who doesn't diagnose on the basis of labs alone.

jonnoboyd
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 11/8/2016 3:22 AM (GMT -7)   
Update:

My rheumatologist took my results, which showed the bone erosions in the wrist, to one of the most renowned mri specialists in the country - he straight out refuted the erosion findings. So it appears the first mri technician gave me a false positive. I guess for anyone reading this the lesson is - MAKE SURE to get second opinions. Especially for results like MRI bone erosions which can be very difficult to identify accurately. Given now, I have essentially no clinical findings, and atypical symptomology, I'm pretty confident this isn't RA. I think I must have biomechanical issues and early onset osteoarthritis.
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