Hello all, I have been creeping around your boards for a week now & have finally decided to register. I suppose I'll introduce myself first, I am a 23 recent graduate . I have been in generally great health all my life so the recent deterioration of my health has been pretty stressful & caused great anxiety. Upon returning from Cleveland (around June 10th) I'd developed a sinus infection & noticed my joints made a cracking sound every time I moved. Then random joints/body parts began to ache, first my right elbow & upper back & has finally progressed to my spine (upper isnt so painful- but the lower back is really bad.
I saw a dr & she accused me of being depressed & missing my bf (he has moved to CLE to begin a new job) & gave me a Rx for the antibiotic & ran the standard Autoimmune tests (all which were negative), Xray of my back to check for SA & sent me on my way. It's been a few weeks & the pain has only gotten worse. The dr had advised me to take 2 Aleve 2xday & I did that until I had acid reflux (I've stopped the aleve). A few days ago it was raining all over central Texas & I felt like my eyes were going to pop out of my head so I went back to the dr & again talked about my muscle/joint problems in addition to sinusitis & he prescribed me Augmentin 875 mg & diclofenac 50mg & I've now found out that I have a UTI (didn't start exhibiting sx until a few days ago). I had my PAP & STI/HIV workup 2 wks ago-I'm clean. Now finally, I have seen a dr & expressed my concerns about possible Reactive Arthritis & he advised me to keep w the Augmentin & take Glucosamine (which I've already been taking; best friend has RA & recommended it) & to check in w him next week. Sorry for the long winded post, but I'm so desperate to figure out whats wrong w me. It's quite discouraging being told by health professionals & family & friends that its all in my head when it isn't. I feel like I'm not being taken seriously & fear I'm coming off as a hypochondriac. My right hip is now becoming stuck, along w my right elbow & my left knee is now beginning to swell. My mornings are just terribly stiff & good, restful sleep is hard to come by these days. Has anyone else experienced similar frustrations, or care to share their ReA stories? I'm feeling alone in this.
Last edited by Administrator; 08-23-2012 at 06:51 PM.
First of all, I hear your frustration. Many comments people receive when they have these symptoms are not kind and are inappropriate. I would first get a copy of your lab results and see what tests were run. An ASO (anti-strept antibody test) should be included, since this seemed to start shortly after a sinus infection. Reactive arthritis usually follows a STD or diarrhea from certain germs. I would pursue the inflammatory arthritis pathway with a rheumatologist who specializes in autoimmune disorders. Early in the course of these, the blood tests may be negative, and it may take time for the whole picture to come together for a specific diagnosis. Someone who believes you and believes in you will follow your health and treat your symptoms while waiting for answers.
I would stress how important it is to get your test results on paper. Many patients are told their test results are negative by office staff or even the Dr. when they are not, or they show some clues worth follow-up. If you have those and want to post what you have, you may get more feedback. Hope you have found a new Dr. by now that will look into your symptoms more.
thank you very much for your well wishes, empathy and advice. it turns out i have myofascial pain syndrome. a levator scapula injury + poor posture and a lot of unmanaged stress are to blame. i had no idea popping and cracking joints could be a symptom. anywho, i will be starting physical therapy (and seeing a psychiatrist-lol) to try and keep this from becoming chronic. this has truly been a humbling experience. my best friend (she's 24) has rheumatoid arthritis. she has it in control & that gives me hope. take care, all.
I agree with Ladybug; people must get all their tests reports, blood work results and keep it in their records. How many times I experienced when they tell you over the phone blood work is OK and only years later you find out that actually it was red flags, but nobody paid attention to it.
My son gets sinus infections since he was a child. When he was 16, still in school, one day I noticed he was very tired, than swollen joints, than fevers and chills without any reason. He complained about pain in every joint and muscle. I was worried since OA and RA run in our family. His pediatrician told me this could be due to RA even though his blood work was OK. I didn't believe and went to see RA Dr. Than another specialist just to make sure.
They told me when person has any infection in a body, it flairs inflammation; inflammation causing any kind of symptoms, it can even stress gastro intestinal issues, IBS, symptoms like Lyme or RA... meanwhile it's nothing but inflammation. If it treated right and on time, all symptoms disappear.
I read an article many years ago; statistics in US shows that too many misdiagnosed people taking drugs they don't need, sometimes for years and years, not even knowing they don't have any disease, but due to either post infection inflammations, Lyme like symptoms, etc.
They said that many RA doctors do not believe in RA disease until they see blood work shows it. But many of RA Drs "diagnose" patients with RA as soon as they see some inflammation and symptoms which may relate to RA. Same statistics about MS patients. This is scary.
I had JRA since 12 years old.
When I got pretty sick at age 29, I start to look for RA DR. I was told many times despite having JRA while young, doesn't mean I have RA now and would dismiss me just b/c my blood work was inconclusive.
Only at age 35 I met my RA who told me seeing me first time, she is 100% sure I do have advanced RA where lung, heart, joints and muscles involved. And guess what? My blood work was inconclusive again.
Her theory is: even if blood work shows no signs of RA in some patients, she may diagnose them with RA with question mark saying that if this is a real RA, blood work must show signs of the disease sooner or later. If she doesn't see any signs during first year, she may
test this patient over and over to make sure she is not missing anything. If patient doesn't have any signs of inflammation / RA tests positive during 1-2 years, most likely this is not RA.
Just to make sure about that, I went for second opinion to a very good RA. He agreed with my RA completely saying that if patient has RA - sooner or later they see it in blood test results. Otherwise, patient may suffer from something else and they send them to see other specialists.
Sure enough; my first 3 tests were inconclusive. Despite " RA lung" and heart damages; despite every joint/muscle/ligaments damages, joint surgeries - it was inconclusive. Only 4th one, when I was on MTX + Enbrel showed full blown picture of RA. Interesting, is in it?
So be careful, go to see good specialists, and do your homework as well. Very important to listen to your body, know what your DR is talking about and use common sense.
Wishing you well dear
The Following User Says Thank You to Moldova For This Useful Post: Astrader (08-24-2012)
I know a female rheumatologist in San Antonio that I think is good. She is by the university. I have been to her a few times when there I was there on vacation, and she seems thorough. Her name is Emily R Pineda.
I think, like Moldova, that tests need to be repeated frequently, and particularly during a flare of symptoms. I would get the RA and ANA tests done at least yearly. Sjogren's can cause associated arthritis symptoms too, so that is a possibility. I have lupus and it took 10 years after my symptoms started for my ANA to show up positive. That is a bit unusual, but it points out the need to keep checking for an answer. In the meantime, treating the symptoms as best as you can can help you feel and function better.
Last edited by Administrator; 08-23-2012 at 06:52 PM.