Hi all. I realize my below story is pretty long, but I am quickly running out of options and would greatly appreciate any advice. Thank you in advance:
For about a year I have had diffuse, symmetrical tendon pain. The pain is mainly in my elbows (both Lateral and medial epicondylitis) and the back of my knees. But it also afflicts my left rotator cuff, the area just below both calves, the base of the achilles, my knees, and (within the last 6 weeks) has started to affect my fingers and toes. Along with the tendon pain, I experience a lot of muscle stiffness in my forearms, hamstrings, and calves
The pain is very activity related. While most afflicted areas are tender to the touch, they get much worse under strain. For example: my elbow tendons are tender when palpated, but give shooting pains if carry or push anything heavy. The back of my knees are generally stiff and tender, but get unbearably painful if I stand for about an hour (say, if cooking), or if I walk for about 30 minutes. Similarly, my knees ache (along with the lower parts of my quads) after a flight or two of stairs.
The most plausible cause of this is some sort of inflammatory auto immune condition; my rheumatoligist thinks Reactive Arthritis. This is supported by the fact that I had some improvement on NSAIDs and that the tendon pains are mainly enthesopathies. However, I am 6 weeks into a 2 month trial of Humira, with no improvement. I am negative for HLA-B27, all my rheumatolgical markers were normal on blood work, and a bone scan was normal. Also, a Physiatrist I saw thinks that the tendonopathies are too diffuse to be reactive arthritis, but he has no other ideas.
Another option is Fibromayalgia, or some similar neuropathic pain condition. This seems unlikely because the pain is so activity related, and 2 neurologists I saw did not think it was the case.
It's possible that this is all a side effect of Levaquin, which I took with Prednisone for a sinus infection. But it would be an extremely undocumented one, and therefore is very unlikely.
Some lengthy background:
I am a 25 year old male. Prior to these issues, I was very active; I lifted weights regularly for the last 5 years, and rock climbed for about 2 years.
In January of last year I started suddenly started experiencing severe bicep tendonitis. This occurred while I had a sinus infection which was treated with levaquin and prednisone. The tendonitis was diagnosed by my PCP, who recommended reduced activity. After about 3 months of non-recovery, I saw an orthopedist who started me on physical therapy. The physical therapy was non-effective.
Around this time I developed another sinus infection. It was initially thought to be pressure headaches, and a long 3 week taper of prednisone was prescribed. When this was ineffective, it was treated with Biaxin. Around the end of the prednisone taper, I developed the knee, shoulder, and achilles tendon pain which I described above.
When I relayed these new symptoms to my orthopedist, he sent me to a rheumatoligst. Blood tests were negative for rhemuatolgical conditions and a bone scan was normal. The rheumatolgist tried treatment with NSAIDs: about 2 weeks of Aleve, a brief stint on Voltaren (discontinued due to stomach pain), and about 6 weeks of Mobic. These lessened pain slightly, but not significantly. So, he concluded that I had a diffuse Entheospathy, declared that it was neuropathic, and prescribed 3 months of Sevalla.
I was confused by and skeptical of this diagnosis so I consulted with my PCP. He suggested I see a neurologist (to discuss the neuropathic possiblities), start physical therapy again, and get a 2nd rheumatolgical opinion. The neurologist said he didn't believe it to be neuropathic and the physical therapy was discontinued after 3 months of ineffectiveness.
The 2nd rheumatolgist diagnosed me with Reactive Arthritis based on: the entheospathies, the fact that the issues followed an infection, and a lumbar xray showing sort of "bone clouding", which he said was an indicator. He prescribed indomethacin. I expereienced a lot of relief for about 10 days on the indomethaicn, but relief suddenly stopped after that. After about 10 more ineffective days on indomethacin, I was switched to Feldene. The Feldene was moderately effective, some relief but significant pain persisted. Though, pain became much worse when Feldene was discontinued. He concluded that the relief (although moderate) provided by the NSAIDs was further evidence for Reactive Arthritis and that I should try Humira. I have been on Humira for about 6 weeks with no effect. If anything, pain has gotten worse (though worsening should probably be attributed to discontinuation of NSAIDs).
Has anyone mentioned psoriatic arthritis even if you dont have any visable psoriasis, the tendon pain is very suggestive of this. I have it and only after a long struggle did I get a diagnosis. Have only got very mild pustular psoriasis on hands and feet and didnt know what it was for years until the arthritis came along. Humira would be one of the treatments for it anyway and I find diclofenac helpfull for pain and soreness.
THANK YOU for this suggestion!!! I've had horrible pain in my sacral ilia joints and stiffness in my back for 3 long years. Also pain in my tendons and stiffness in my fingers. It wasn't until I googled itchy joints that I found this site and after reading what you had to say, I looked up psoriatic arthritis and it fits SO MANY of my symptoms! My mother has psoriasis and low and behold, I do too, I just never realized it because mine presented differently than hers.
I cannot thank you enough for your suggestion because I've been to back doctor after back doctor for the pain, plus PT and chiropractors, plus blah blah and NOTHING has helped. I think I finally saw the light tonight thanks to your suggestion. I'm SO grateful!
Also, jdob22, I get the same symptoms as you, elbow pain in the tendon area if pushing something heavy, and knee tendon pain if standing for an hour or more. Also stiffness in shoulders and fingers. Also achy muscles.
I didn't realize I even had psoriasis until I googled the photos and took a look. And my feet look just like those of people with psoriatic arthritis. I suggest others google the disease who might think they have it. The ONLY thing that clued me in was the itchy knuckles. I'd scratch them until raw. I guess this is a hallmark of an autoimmune disease.
Good luck to those of you searching for your answers. I know the journey can be long and difficult. But at least when we finally KNOW what is wrong, there is some measure of light at the end of the tunnel.
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