Multiple sites bursitis/tendonitis unrelated to injury or disease - infection related??
I was diagnosed with more than six sites of tendonitis/bursitis following an unknown "flulike" episode in 2007. Prior to that I was in no pain, had no history of trauma or repetitive stress injury and was healthy aside from frequent infections. I now have been diagnosed with:
- Bilateral Trochanteric bursitis and ITB syndrome
- Baker's cysts/bursitis behind both knees
- Bilateral Gluteal bursitis/tendonitis (not sure if that's correct term - ischeal bursitis?)
- Pain accompanied by minor redness and swelling at all sites that comes and goes
- Fever has accompanied symptoms for 2 years now; fever ranges from 99.9 to 102; waxes and wanes
- ALL tendon insertion points in my body are red and very sore, occasionally developing minor swelling
- Pain was sudden, bilateral and severe in onset at all these sites, 2 days after recovering from the worst "flu" episode of my life!
- Pain responds well to Indocin; at times is severe enough to require Oxycontin or MS Contin as well; cannot function without NSAIDs
- Other symptoms include pain, tingling and numbness in my arms, legs, fingers and toes (transient) and severe fatigue; diarrhea which started a month or so before the bursitis and never resolved (ruled out Crohn's and parasitic/bacterial GI infections, ruled out C.Diff)
- Physical therapy resulted in episodes of extreme pain and fatigue; had to discontinue
- Currently receiving tons of cortisone injections, of minimal benefit
- Rheumatologist performed extensive bloodwork and ruled out: autoimmune disease, reactive arthritis/reiter's syndrome, lyme disease and Crohn's disease (bloodwork and colonoscopy, as I have a history of chronic diarrhea).
-Also had MRI of brain, cervical spine, thoracic spine, and right thigh; ruled out MS and myositis. However, MRI did
reveal disc bulge T3/T4 with spinal compression and degeneration.
- Rheumatologist's diagnosis is benign joint hypermobility syndrome. Was diagnosed by 2 different rheumatologists at
famous teaching hospital. They feel all bursitis/tendonitis is structural and functional; don't feel results from Thoracic Spine MRI suggest anything requiring further evaluation. They suggest orthopedic/surgical intervention of both knees and both hips so that I can successfully initiate physical therapy.
However; the orthopedist I saw said four surgeries are a lot, and still might not cure my exercise intolerance, as I also have knife-like stabbing pains in my heels, achilles tendons, etc. He also said he cannot operate while I have a fever; was concerned that I don't know the origin of the fevers and that they go along with the bursitis/tendon pain. Reluctant to do surgery in that setting.
My question is:
- I know it's very rare that trochanteric bursitis could be infectious in origin; but I have a history of skin, urinary, vaginal and sinus infections (almost 2x/month for the past six years) all caused by either strep or staph bacteria. Is it possible I have a rare form of septic bursitis? Could I have some sort of rare systemic infection that caused the bursits? Would it be unreasonable to ask for tendon and bursal fluid biopsies, just to be sure?
- Also, would it be advisable to include MRIs of other sites as well (knees, lower back, etc?)
- Finally, could some sort of spinal disease that doesn't show up on bloodwork be causing lower extremity issues? If the thoracic spine has mild disc bulge problems, could the lumbar spine also be worse? I do suffer from extreme lower back pain as well, but always thought it was radiating from the gluteal tendonitis. Perhaps it's the other way around?
- Lastly, is an orthopedist the right type of specialist to eval for septic bursitis (if necessary?)? The orthopedist that I see says his job is not to test or evaluate or treat septic bursitis, it is simply to perform injections and surgery. My rheumatologist also says she is not equipped to evaluate for septic bursitis, and neither is my internist. What type of specialist would be the best to contact about this issue? (I did see an infectious disease specialist who said bursitis is never infectious in origin).
Sorry for so much info, and thanks so much for your time and opinion.
My daughter had a 2yr bout of Post Streptoccocal Reactive Arthritis that was finally DX'd by a Rheumatologist after a flu like illness that left her with Tenosynovitis that lasted a long time to the tendon sheaths in both legs and they swelled to many times their size.
The Rheumy did an Anti DNase-B test which was extremely positive which clinched her diagnosis which stemmed from a Past Strep infection someplace in her body which went askew. Oddly enough, this has happened again and this time her Ped was prudent enough to run an immediate ASO and the titre is 800 .. this was after a month of not feeling well, with a strep like rash and no improvement on 2 antibiotics.
Wonder if the UTI's you mention could have been a trigger?
Worth asking your Rheumy about this extremely rare disorder. It's similar to Rheumatic Fever but is not.
You mentioned you had infections. Did you, by any chance, take a fluoroquinolone antibiotic such as Cipro, Levaquin or Avelox. If you did, this would explain your symptoms. It causes neuropathy, tendon issues, joint problems, etc. Look it up.
I have had SEVERE joint pain from taking avelox. After 2 days of taking the antibiotic for a combined sinus and a mrsa staff infection, I had crippling joint & tendon pain in my knees, ankles, Achilles, shins and hips. After calling my dr. and speaking to my pharmacist, i stopped taking the medicine immediately. I made an appointment with the prescribing dr. the next day and after he told me to take it easy and quit exercise to avoid rupture, he told me the pain and swelling would go away in a couple weeks. Well, 3 months later, I saw my internist who said it would go away on its own. Well a year later, I am still suffering every day with this pain and weakness. I will have periods of a day or two (usually after seeing my acupuncturist) where the pain will get a little better but nearly every day I have debilitating pain and my lower extremities which causes me to limp and is giving me lower back pain. I can't figure out why, a year after taking the medication, my joints don't appear to be getting any better or healing at all. I can't find other people who have overcome this issue or information about this side effect beside the fact that it exists. Is it possible that the avelox triggered some kind of autoimmune disorder that is causing my body to attack my tendons? how would I get it diagnosed? I lost my health insurance and can't afford MRIs or expensive dr visits. I'm lost and becoming depressed and hopeless. I'm only 25 years old female and before this, an athlete and very active person. now I have zero energy and can barely wake up in the morning. i can't do anything i love anymore, make plans or finish school because I can't concentrate and I'm just tired of being crippled and in pain every day. please help. any website recommendations, information or contacts you know of would help. thanks.
I know it has beem a while since your post. I hope you got a diagnosis by now. It really sounds like you have Lyme especially since your problems started after a flu- like illness. When I first got Lyme, I had what felt like the worst flu ever with terrible malaise, fatigue, weakness, and I even lost my voice. Years and many symptoms later, I tested negative in a Lyme screening test and a cerebral spinal fluid test. I finally tested positive on an IgM Western Blot at IGeneX. People who have been sick for over a year often test negative for Lyme as it's immunosuppressive. We produce less and less antibodies over time, and eventually, they fall below detectable levels. Unfortunately, many doctors don't know this and believe a negative excludes Lyme. It doesn't!! Even the CDC say s a negative cannot exclude Lyme.
Get yourself to a Lyme Literate Medical Doctor ASAP. Most Infectious Disease doctors and rheumatologists believe Lyme is easily treated with a short course of abx, and then when you're still sick, they say it's your immune system causing the same symptoms that Lyme did and they'll call it "Post Lyme Treatment Disorder". LLMD's believe that if you're still sick, you're still infected and will treat you until you are well. Check out local Lyme support groups for recommendations in your area, or go to the ILADS website. You might have to travel. I know my doc sees many patients from out of state and other countries. It's worth it to get your health back!
What you are describing does not sound like Avelox at all, but rather symptoms of Lyme disease. Sometimes, trauma such as injury, illness, or stress allows an underlying Lyme infection to come roaring to life. I know this was true for me.
See if you can find a doc to authorize Western Blot tests at Igenex, an advanced testing lab. People who have had antibiotic treatments that were insufficient to kill all the Lyme bacteria will often test negative, and Igenex is more likely to find signs of Lyme. Lyme can go into hiding in a cyst form and when the immune system doesn't see it anymore, it drops production of antibodies, which is what the screening and western blot tests look for. Usuallymits the sickest people whom test negative. A LLMD will know how to make a clinical diagnosis after eliminating other possibilities.
It has been over 3 years now of pain that I have been going through. Sharp pains all over body, cracking of all joints, muscle weakness, fatigue,even sharp pains in my ear and chest pain. Went to every specialist possible and all blood tests come back normal. Saw ENT and ear came back normal. Went to neuro and he basically said its stress( I am not stressed out but this is causing me to stress). Saw Endocrine and he told me at the end of my visit "Don't schedule a follow up, ill call you". Saw a cardiologist and it came back normal. Saw ortho and he said my hip bursitis is prob due to age( I am 26 not 70!) When symptoms first started my lymes came back positive for two bands and I had a 4 week treatment of dicyclomine, but symptoms have got worse since. I now have chronic fatigue and very depressed and pain can be unbearable and I have to work full time and have a 7year old and 4 year old. I've been treated for fibromyalgia but the medications gave no relief. Doctors keeps saying I'm a healthy 26 year old but I feel like in deteriorating away. I don't understand how someone who was active and felt fine 3 yeas ago could feel like how I feel now. My husband probably thinks I'm exaggerating but I want to feel normal again. I live in Philadelphia... Any suggestions on who to see??
I know it sound wonky, but my chiropractor had lyme and did the antibiotics to no avail. She then saw a naturopath who put her on some kind of flower essence (teassel?) and it worked for her. There are some studies online that you can look up. Maybe you can find someone local to you that can help? After three years, it might be worth a try. I'm 8 months in with the same symptoms and am at the point where the things that sounded like quackery to me a long time ago are now worth a shot as long as they don't involve being cut open.
I don't know anyone in that area, so I would just look for a naturopath who treats your type of condition. They seem to be the most open minded. There are other types of stress other than emotional stress. It could also be adrenal stress and that won't register in your blood unless it's severe. A naturopath would be able to talk about it more than I can. I'm getting a LOT better now that I'm making it a point to take the supplements mine put me on, sleep (for real) 8 hours a night and gave myself a bedtime (I'm 35 - seriously), and started stretching. I don't know why this one helped so much, but it's a miracle in itself. (And the name is no relation - different Leslie.) http://www.youtube.com/watch?v=qgGGs8PbXeI
I'm in Denton, TX north of Dallas. I have severe ear pain and joint issues as well. We have chemicals in our air (methane, benzene, byline and others) from fracking and I am super sensitive. I think there is so much benzene in the air I developed an allergy. Now I react to cream with small amounts of benzene. When I read your comments it was like I was reading my own!! I've spent thousands had MRIs and tests. I am allergic to 58 foods and all GMO food. I have chemical sensitivities as well.
So I eat an organic paleo diet, wash my fruits and vegetables on a rinse cycle in the dishwasher after spraying then with a vinegar wash. My house is filled with plants that clean the air. We filter our water. We don't use any cleaning products except vinegar, dawn, alcohol, and some of the Meyer's Clean Day. Anyway, this lifestyle has changed the way I feel more than any medical intervention ever has. Dr. Barbra Baxter in Dallas started me on this path and did my testing. I am so grateful!! We are also planning to move away from this area, but tracking is everywhere in US...
Go to a geneticist and get tested for EHLERS DANLOS TYPE 3. It is a "rare" hyper mobility disease (its underdiagnosed) that affects all your joints and tendons systematically. There is no blood test, but there are other tests they will do to check. If its eds, youll have a whole host of seemingly unrelated issues, maybe oddly flattening feet, sinus issues, facial/nerve pain, systematic bursitis, carpal tunnel, scoliosis, joint pain, cracking and snapping, bowed legs or bones in your feet...
I wanted to also suggest you check your immune system. I have similar issues and more and was undiagnosed 12 years. They finally found primary immune deficiency. I am treated wkly at home with immunoglobulin therapy via subcutaneous needles. This helps replace some of the immune system i lack. Id go to an immunologist with your history of sinus infections and ask to do the "vaccine challenge/test." They will test your immunoglobulin, give you pneumonvax and test you again in a few months to see if your body held the vax. This can diagnose an underlying immunity issue. Though i was found to be lacking in immunity and am treated, the systematic pain and joint degeneration has aggressively continued. My pain started at 19 and i am now 37. Its horrible and getting worse. I can barely walk. Don't allow yourself to become overweight or you'll be 10x worse and degrade 10x faster.
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