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To diagnose or not, that is the question

Mar 18, 2016 2:21 AM

I've been in pain for so long and been shut out by doctors that I go through phases with them. At first I was going a lot to get some answers but when they couldn't give me any I gave up for a while. Then the pain would get so bad that I'd go back and then get pissed off again and give up again. So my question... blood work says I don't have RA or lupus so is it even worth it to see a neurologist or rheumatologist or would I be okay just going the pain management route?

Mar 18, 2016 2:54 AM

I think an orthopedic and a neurologist would be a good place to start. But I would also would have on board a doctor that is backing me up that they agree that you shouldn't be having pain. If your doctors believe you are in pain but have fibromyalgia, that I can understand. In that case I would inquire about a neurologist if the pain is burning, prickly, or has a jolt like feeling, I guess stabs. Fibromyalgia is actually a neurological problem from what I have read, just a systemic one or most of the body. Rheumatology would have checked for inflammatory diseases. But those are only auto immune where the body attacks itself. There are other things. Neurology could be another avenue. I would think it is unlikely but it could be another stone to look under.

Mar 18, 2016 3:08 AM

I asked to go to pain management(PM) because my meds were causing agrevated GI tract and not able to tolerate them. I was disappointed in the PM because she told me to pick which area i had to get relief from. After injecting the lower back she stopped and said i was in too much pain for her to continue. I did sleep in the car for part of the two hour drive back home, my husband was driving. I had nerve test done on my legs they said i was fine. But my feet still hurt and my toes are numb and have developed thick dead skin.

Mar 18, 2016 10:05 PM

Cass, you will have to help yourself and the doctors. Most docs only traet one thing at a time. Just be aware. If you start doing a discriptive journel with what you experence, not using the word pain but some other discriptor like burn, sting, tingle. The what you do each day and for how long. And use this site . Even diet needs to be kept. If you have these tools you can do some research yourself. Then also get all your medical reports for the last few years and read them, you might see a pattern. Have a long apointment when not in so much discomfort, request a long apointment with the doc and say you want that appointment in her office not an exam room. I use my phone to record things through out the day, most have a recorder that u can use , then I write it down at a set time each day. Kinda like taking notes in class. Good luck

Mar 19, 2016 8:42 AM

Cassi33, I couldn't agree more with what Profiler & Zetarlov have suggested. Keeping a journal of every single symptom throughout every day is important, no matter how trivial they might seem. For instance, I've had tremors for over a year, and they were really bad when they started. Over the course of the past 6 months they've become almost unnoticeable to others. Last week I woke up 2 days feeling off-balance and with worsened tremors, so I notated when they started and how long they lasted. I use an app, called "Symptom-Tracker" by Telecomputing Strategies, for these little vague symptoms that might happen on & off throughout the day. I use this pain app for a more general all-over how I'm feeling & dealing with the day, but I add symptoms that don't come & go quickly.

You are your best advocate, and you know your body better than anyone. Be very descriptive describing symptoms, like "I felt a sudden stabbing pain in my low back that sent shooting, throbbing, electric-shock-like pain to my foot on the outside of my leg. And it didn't go away completely." Or something like, "I'm getting headaches at the back of my head that come over the top and it throbs.". Many conditions share similar symptoms, and that's why it's important to be very descriptive to the doctors.

My PCP doc treats my fibromyalgia, even though it's really under autoimmune (AI) & neurological categories. My rheumy doc didn't want to treat me for it because at that time I didn't have any other condition. Being insistent and tracking my symptoms, I finally had a biopsy of my inner cheek and it came back positive for sjogrens, another AI disease. I'm under a doctor for every area of my body, due to the many chronic issues I have. But most doctors don't want to treat " pain ", especially if it's general " I yet all over " pain. That's why the area of Pain Specialists have opened up, they specialize in identifying and treating pain. But some prefer to just treat. I think you should give pain specialists a chance, and a neurologist & Ortho too, especially if you're having spine pain or neuropathies. Hugs & prayers you will find the right doctor who will listen and look for the causes of your pain! 🙂💕🙏🌼

Mar 19, 2016 8:54 AM

I think this is a dilemma we have all had at one point with mixed results. I think in order to know how to proceed you need a diagnosis but even that can be difficult.

For example my diagnosis was fibromyalgia in 2006 and I said no really figure out what is wrong. Then hashimotos, anxiety and some other issues. Then in 2014 again fibromyalgia by a rhuemotolgist, my doctor and 2 pain clinics (both pain clinics said nothing they could do for me) in 2015 they finally did some mri on my spine to find my spine is completely messed up. So on one hand the diagnosis of fibromyalgia in my opinion kept them from looking at other possible issues and on the other hand there is nothing to be done at this time about my spine but I do know how to limit myself to lessen pain and what could make my spine worse.

Mar 21, 2016 9:31 PM

Ask to see an internist. I was blown off by my GP, 2 Rheumies, an ENT and a pain clinic. In one visit with the internist. They found all sorts of signs and symptoms of autoimmune disease including lots of swelling I was told didn't exist. They believe I have lupus, sjogrens and sclaraderma. Other than my ANA test being positive and some osteo showing up in my hips and back all other tests were negative. Those tests are not definitive. You can show negative and actually be positive and vice versa. My doc finally believed me when my finger turned blue in front of him. He diagnosed me on the spot with Raynaud's. Then finally sent me to an internist. Don't give up. You know your body better then any doc ever will. They work for you. Take pics of anything visual.

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