Suffering with diffuse tendon pain, any advice would be appreciated

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).

Lucy, thank you for your response.

The problem is that none of the doctors I've seen (my pcp, 2 neurologists, 2 rheumatolgists, 1 orthopedist, and 1 physiatrist) thinks that the levaquin is a remotely reasonable culprit. So, while I will not dismiss it as a potential cause, it seems very important to continue to pursue other possibilities too make sure I don't miss a serious disease because I'm convinced of an entirely unsubstantiated conclusion.

That being said, my pursuit of other possibilities certainly opens me up to potentially unnecessary risk (humira is risky) and expense (humira is pricey).

Jdobb22, I have had the same exact problem for over 6 years.(previosly very well built and active)

  Recently I've developed severe photophobia as well.  If it wasn't for my wife, I would have shot myself after 2 years.  I have seen at least 30 different doctors and can tell you that most do not care about you.  It's a problem that needs to be dug into.  There is no money in it for them so, they won't.  It's too much work for them to be bothered.  Im going to the mayo clinic in florida at the beginning of next month to make one last attempt at getting my life back and if that doesn't work out........  If anyone here has any answers, I'll take them. 

I also have a lot of pain not in my joints, but in the muscles and tendons. I've been on many biologics for over 12 years and really can't say I've seen relief. Most people seem to think the pain of arthritis is in the joints, and hurt when you move or stand. That pain is definitely there, and a problem. The worst is when you can't lie still because the pain in your legs hurts to bad.

Before I was diagnosed with RA my history was similar. I was a very active guy, 165 lb and ripped. Worked outdoors and started having tendon issues. This went on for a few years. a myriad of Doctors and I never had a test result for anything indicating RA until about year 3 when the rear of my right knee tightened up and then blew up like a softball.

From that came back the positive RA factors and off the charts SED rates.

I really wish you the best of luck and will keep you in my prayers that you can find an answer to this. Your diagnosis could be completely different but I can sure relate to the uncertainty of being told tendinitis over and over. I knew then that there was no way that tendinitis at 25 years old was an accurate diagnosis but unfortunately with no real evidence the Doctors didn't have much to go off of. I wonder if there are any biopsy type tests that they can do that could reveal the cause or at the least give them something to go of off. It may be worth some research and a trip to your Doctor but make sure when you do it that you are flared up. It is worth having to sit there all day if they are then able to gather evidence that will point them in the right direction.

I still have issues with tendon pain and stiffness but nothing compared to the typical RA that my disease has turned into. Right now my hand is swelled up so large that my knuckles are not visible and I can't close my hand more than a third of the way. I did end up having to have surgery to remove the sheath from my right achilles tendon at one point because it broke away from the top (like a bunched up sock) and gathered at the bottom near my heel. My Rheumatologist told me that this was not uncommon and that more than just joints are affected with RA. -Don

good thread, confreres. i've had the occasional tennis elbow, arthritis flare, etc for years, but 18 months ago developed a progressive tenosynovitis, arthritis of wrist (STT) related to continuous overuse (kayaking, surfing, yoga, SUPing)--coz we're invincible, right? a few months ago, noticed painful flexor and extensor tendons, insertions bilateral forearms (enthesopathies?), had some steroid injections, acupuncture, tried magnets, nsaids, topicals, etc etc. symptoms have not abated, but fortunately, have not progressed significantly. mentioned to my rheumatologist recently (OA for many years), and he inquired about quinolones--my epiphany as well--but have not used for many years due to apparent allergy. but my money is on the quinolones for most respondents here. anyway, that's my story--now for some commentary.

i'm relieved to see that i'm not the only person with what seems a peculiar malady--having been an NP for 25+ years, i'd never heard of diffuse or multi-focal TPs until i developed it. so, it seems relatively rare, or little attended. hard to say the degree to which quinolones are involved, as pretty much everybody in the developed world has taken them at some point. your case reports suggest it's hard to treat, and based on discussion, sometimes symptoms sometimes presage development of RA (just read article on psoriatic arthritis, which also notes enthesopathies). lots of good research topics here, for sure.

what to do about it? exercise, activity paramount, to extent possible. low impact--yoga, swimming, walking, water aerobics all good. paddling, bad. diet--red meat, processed foods, refined carbs generate inflammation. berries, chocolate, garlic, cold water fish, broccoli, kale, TURMERIC (fresh turmeric root, if you can find it) suppress inflammation. MSM glucosamine, voltaren gel, arnica, other topicals may offer temporary relief. salud!

i found this on an article for you

Conditions in which enthesopathy may develop include the spondyloarthropathies, septic arthritis, spinal arthritis, ankylosing spondylitis, reactive arthritis (reactive arthritis), psoriatic arthritis, enteropathic arthritis (accompanying ulcerative colitis and Crohn's disease), and such rare disorders as acne-associated arthritis, celiac disease, and Whipple disease. Enthesopathy is also seen as a complication of avulsion fractures and tendon tears (rarely)

so if you dont have the spine pain or chrons disease or any of the others reactive arthritis does seem like a likely suspect in this. hope you find a medication that treats this. im stuck waiting 3 more months for any help :(

My name is Monica, I read all of these posts but have not contributed but now I feel compelled to share my story since mine was so similar to many of these . I was diagnosed about 3 years ago with Rheumatoid Arthritis, before that I was very active. I had a lot of nerve and tendon pain and inflammation. I had a blood test that showed a high Rheumatoid factor. Just about 2 years ago I could barely walk. I was put on numerous drugs Prilosec for the horrible acid reflux , Ambien for sleep , and Lyrica for horrible nerve pain, Prozac for pain and depression, then 6 Sulfasalazine and 2 Plaquenil for the RA. I was so miserable I had probably 50 steroid shots in different spots on my body over 18 months, my fingers elbows shoulders ribs etc. I was sent to Stanford Pain Management Center and they tried a bunch of new medicines Cymbalta and some I don’t even remember. I was a zombie by this point. All of these drugs had horrible side effects and they were not helping much. I was eating comfort food like mac n cheese because my throat was so swollen I could not swallow anything else. I had horrible chest pain, I was on my way to the ER a couple of times because thought I was having a heart attack. It was probably the indigestion or maybe the rib inflammation.

I realized that I could not go on like this. I decided to try and fix my diet first then wean myself off ALL non-essential meds.

I turned my life and diet around and now I am pretty normal. I do spinning , hiking lots of yoga and I only take one plaquenil and one sulfasalizine. (Down from 2 plaque nil and 6 sulfasalizine)

Contributing factors to my healing


1. DIET – no gluten no Dairy no Soy a clean food diet, limited packaged food, limited sugar etc. Google Paleo Diet. I follow this as closely as I can. I like the book Paleo Solution and Against All Grain.
2. I also added to my diet a lot of foods in the anti-inflammatory diets – salmon , green tea, tart cherry juice. I try to limit “nightshades “ potatoes, tomatoes eggplant, peppers.
3. Stretching in the morning. I contribute much of my tendon problems and stiffness and pain to Fascia and muscle tightness pulled on my joints and tendons. Look on utube for “Fuzz" by Gil Hadly.
4. Rolling on the foam roller at night and sometimes in the morning. I also use little balls to roll my feet but be careful - if they are inflamed don’t do this. Look for the “Melt Method” by Sue Hirtzman. The above techniques worked much better for me than any of the drugs they tried on me (i.e. Cymbalta , Lyrica) with no side-effects. Do not roll , or go very gently when you are really inflamed.
5. Heal leaky gut with supplements- L-Glutamine (powder form every morning in water), Probiotics, digestive enzymes (especially when you might of eaten something you are not sure of). Also fish oil (I like krill oil) Glucosimine and vitamin D. I am thinking of adding CLA and I also take vitamin D.
6. My gut felt better a few months later, I could tell as I had less indigestion, burping, bloating bowel problems. With my Doctors approval, I very slowly weaned myself off most of my non essential prescription meds – for me Prilosec (acid reflux) , Ambien (sleep was horrible when I was in pain) , Lyrica (I had a lot of nerve pain from nerves compressed by inflammation, I had to go very slowly on this one it caused weird nerve problems when weaning off) , and Prozac . Also I quit taking Aleve , Motrin etc these contribute to leaky gut. I now use fish oil supplement or tart cherries or turmeric for inflammation.
7. Get a good doctor!! My Rheumatoligist is open to food being a contributing factor which is rare she is also very good at ordering tests to determine the root of the issues.
8. With my Doctors approval I am now weaning myself off my meds sulfasalazine and Plaquenil. For example I used to take 6 per day sulfasalazine a day now I take 1. My next one to wean off will be Plaquenil I also take 1 . I go very slowly , perhaps one tablet a month as you could have a flare-up. I also only do this when I am feeling at my best not when I feel like I am a little inflamed.
9. Epsom salt baths. When I am a little stiff these really help. This also gets magnesium in your body. Plus most people are deficient in Magnesium.
10. I sadly need to limit alcohol also, 1 glass of wine a couple times a month or Ciroc vodka (made with grapes) with clubsoda or I pay for it.
11. Read the book "Wahl's Protocol". It is about a wheelchair-bound Dr who had MS and treated herself (and others now) with "food". Amazing story.



I have come a long ways in the last 2 years. Considering this is a “incurable, progressive” disease I feel I am doing really well. Most days I feel pretty normal . Since all of this works for me I would prefer to avoid (if possible) immune-suppressant drugs.

Post Edited (mvl) : 9/16/2014 9:44:37 AM (GMT-6)