Undiagnosed chronic pain

My name is Sara I am 22 years old, and I have had unexplained joint pain for 7 months. Prior to the pain I was very active (working out 3-5 times a week), I eat healthy (very little processed foods), I currently weigh 110lbs and I’m 5’4”. I have constant aching pain, swelling, heat and redness in some but not all of my joints, limited range of motion and frequently have flare ups that last any where between 24-48 hours (usually no longer). The joint pain and swelling is asymmetrical, typically affecting one side and not the other. The constant pain and swelling is in my right shoulder, my pointer finger on my right hand (first and second knuckle), my middle finger on my left hand (first and second knuckle), my left wrist (a lot of pain when I try to put weight on my hand), my knees (one is always worse than the other), my left ankle and my left big toe (knuckle that meets my foot). I have noticed recently I have pea sized hard painless lumps on both of my Achilles’ tendons, as well as lumps on my knuckles that are sore (looking almost fluid filled). When I have flare ups, the pain is excruciating. Depending on what flares up I am sometimes not able to walk, dress my self or even get out of bed. Nothing triggers these flare ups and nothing helps ease the pain. The pain is usually worse in the morning and gets better through out the day. Although I have not had a flare up in a month or so the constant pain is getting worse, there are more spots that are sore regularly then a month ago.

I have been to the doctor I would say about 5 times, had blood work done but everything has come back fine. No inflammation markers, no RA factor, everything looks normal. I am getting sent for x-rays next month and hoping that they find something.

My doctor is saying he thinks it is fibromyalgia but I don’t feel that the symptoms of fibromyalgia fit the symptoms I am having. My doctor prescribed me Lyrica on the first visit which didn’t help at all and then prescribed my gabapentin which I refused to take because I don’t feel comfortable taking something that strong. I also don’t feel like I have had enough tests or that my doctor has done enough to be able to confidently diagnose me with fibromyalgia. He has not asked me a single question about anything, has not even looked at any of my inflamed joint and has not done a physical exam of any kind. The only testing I have had is blood work and soon to be x-rays. I am not fatigued, I do not have brain fog and I do not have trouble sleeping (all symptoms of fibromyalgia). I have recently asked to be referred to a rheumatologist to be diagnosed properly and my doctor refused saying that my “issue is not a rheumatoid issue, so they won’t be of much help to me”.

I am becoming increasingly frustrated and angry. I used to be very active and now I have a very hard time doing anything physical as I get sore. I take turmeric and a probiotic to try and help alleviate the pain and it seems to help a little bit. If there is anyone reading this that can offer me advise or has any type of idea what this sounds like I would greatly appreciate any help you can offer me. Thanks you!

I’ve taken low doses of naproxen and it seems to help a bit! I’ve got lots of pictures of the swelling and bumps but my doctor is just very dismissive and honestly doesn’t seem to care. Just wants to label it fibromyalgia to get me to go away.. My quality of life has gone down drastically since this all started and I am anxious to get diagnosed so I can start to manage whatever it is and get my life back if possible. Going to start searching for a doctor that will help!! Thank you

Rheumatologists are not just for the many types of arthritis, they treat all kinds of inflammatory diseases that a primary care physician is just not educated enough to deal with. Lupus, connective tissue diseases, sjogren's, fibromyalgia, etc.

The way I found a good rheumy was I found the local chapter of the national Lupus Org, and looked at what local Drs were active on their advisory board. I felt like those would be the Drs interested in all facets of the disease, not just handling their patients and going home.

If you have another illness you suspect, find the national group and do what I did.

Check with your insurance carrier and see if it's even necessary to get a referral. You may be able to schedule an appointment on your own.

Sharon

If you see a new primary care doctor and a rheumatologist and they are of little to no help. I recommend going to a teaching hospital in your area. They have primary care and specialists clinics. They also accept private insurance. I rarely recommend teaching hospitals/clinics. But in situations like yours when private doctors are not of much help, I do.