My doctors don’t seem to care. I need advice.

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My name is Courtney and I’m 22 years old. I’ve been dealing with lower back and hip pain for about 5 years now and it’s been getting progressively worse. I’m not exaggerating when I say that I’m in pain every single day. I’m convinced that I have Ankylosing Spondylitis but none of my testing shows inflammation. So far I’ve seen my regular PCP, the spine center, the pain clinic, and rheumatology and none of them can figure out what’s wrong. I haven’t injured myself or had any change in mechanics, NSAIDs help outside of my flare ups, light walking helps a lot but once I stop moving the pain comes right back. Some of my symptoms include nightsweats (during flares), increased all over joint pain (mostly knees, elbows and shoulders), costochondritis (diagnosed Jan 17), extreme fatigue, pain induced insomnia, and early morning stiffness. My symptoms can be very debilitating, they impede my daily life including my job and it’s decreasing my quality of life immensely. I’m just tired of trying to get answers when my doctor don’t even seem to be trying. I send them messages every so often to give them an update on my pain and/or symptom changes and they’ve been getting slower at replying. Any advice (or words of encouragement) would be greatly appreciated. Feel free to ask question. Thank you!

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  • Posted

    Hello Courtney, I really feel for you as so many of us have had the same problem as you are experiencing. I'm not sure that doctors don't care, they just don't know. And they are too busy or too frustrated to find out. They can look on the "net" or in a book but that won't tell them what they need to know exactly so they give up. Ask for an MRI test and that will,show any abnormality in your spine or sacro area. This is very important so don't give up until you get what you need. If one doctor won't do it find one that will. From what you described here I am almost sure that you have AS but an MRI will confirm this. I've been where you are for so many years and I pushed and pushed till I found a caring doctor who understood 20 years later. Now I'm in a wheel chair. Don't give up please. Hugs to you...gently...G

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  • Posted

    I agree Gloria, it really sounds like AS.  I had all your symptoms, the costochondritis was terrible.  Couldn’t sneeze without immense pain..  not a fun way to live at all..  and even more than the pain is the mental toll it takes on you.  Makes you feel anxiety because you don’t know why you hurt, and makes you sad because you can’t move physically like you used to.  An MRI would be very beneficial.  Have you been tested for the HLA-B27 gene?  If possible, would be one more piece to the puzzle in an AS diagnosis.  If the MRI shows joint inflammation, or with me a positive sacroiliitis diagnoses, that’s another piece to the puzzle.  Have you ever had iritis in your eyes?  That’s a common issue with AS sufferers.  

    To give you a little positive feedback, I’ve been exactly where you are now.  Feeling so hopeless.  I was put on HUMIRA to treat my AS and ulcerative colitis.  It has literally eraticated my joint pain.  I can move freely, without pain, and sneezing doesn’t hurt anymore!  Before I was put on humira, meloxicam was pretty helpful for me, a NSAID.  

    To your point about your doc.  I had same issue, had to be my own best advocate.  I had to request to see a rheumatologist, against his will.  This is after years of asking questions and trying to find an answer.  Be your own best advocate and just take it in your own hands.  The answers are out there, and knowledge is power.  Keep fighting, you’ll get there.

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  • Posted

    Hi have you ever been tested for hlab27? I was misdiagnosed 3 times and my mom was misdiagnosed for 15 years, it’s a good place to start 

    Best wishes 

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  • Posted

    Hi Paige. Stay positive and believe that your doctors do care, but also acknowledge that they too are humans and may not have the answers you are looking for. I struggled with AS for 10 years before my markers got high enough to justify a diagnosis. AS is a slow, lethargic disease, but is hard to stop once it gets rolling.

    Western medicine helped manage the progression of my disease, which basically boils down to one immune system suppressant or another. They start off small, then work to the big drugs like Enbrel. Once I got to that point, I started getting all kinds of weird side effects like skin tags and rashes. That was enough for me to find answers else where, and dived into the research. Took a while, but I eventually came full circle to realize that health and disease predominately lays in the foods we eat, and that we literally dig our graves with our teeth (Dr Gerson). I got off all starches and processed foods, and was able to wean myself off the meds. Now I have been disease-free & medication-free for the past 8 years, and skateboard every day at age 53! Big change when you stop to think that I was bed-ridden for a full year and all the vertebra in my lower back fused over. My recipe for health is this...if you can't eat it in it's raw state, then it isn't food and should not be eaten. A potato for instance can be eaten raw or cooked, which is fine. But things like grains (wheat/flour, rye, barley, etc.) have indigestible properties that trigger the immune system (gluten actually stretches the membrane windows in the intestinal lining from 3 microns to 216 microns where nutrients gain access to the bloodstream...which basically results in poop being dumped into the body!).

    My advise is to start getting seriously smart about what you are feeding your body, and don't rely on western medicine for all your answers. Become an expert on nutrition, digestion, intestinal cleanses, and fitness.

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  • Posted

    Hello everyone,

    Thank you for replying. So I have gotten an MRI, that’s how they found the fused SI joint and the disc degeneration. I’ve also had the CRP and ESR blood tests done. All three of these have come back showing no inflammation whatsoever. I haven’t been tested for the HLA-B27 gene but I have been thinking about it. I probably wouldn’t have to pay much if anything because I met my deductible in March. 

    So far I’ve had a medial branch block and radiofrequency ablation done on L2-L5 because the spine center though that maybe it would help the minor levoscoliosis (< 20% curve). I’ve had scoliosis all my life but that is a very different pain. After those didn’t work my spine doc agreed with me that it could most certainly be autoimmune especially with my family background(4 first degree relative have autoimmune disorders). When I saw my rheumatologist, I requested a calprotectin and she laughed saying that she’s never ordered that for anybody. 

    I’m a medical nerd, I do my research, I’ve read clinical studies, patient stories, doc stories, research papers and more. All of my symptoms match those of AS and I don’t understand why my docs don’t want to even try a treatment. 

    Thank you again for the replies!

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  • Posted

    Hi Courtney I am experiencing similar problems I got diagnosed with as in feb this year, I had been playing playing football regular but noticed the recovery time was taking longer along with flank pain so I went to the doctors and my inflammatory markers were up to cut a long story short after an MRI scan I was told very abruptly I had as there's no cure here's a leaflet !!on your way out !!!

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  • Posted

    Hi Paige! I got better, here's how. I went to all the specialist, with minimal success, and finally ended up with a functional medicine doctor that treats the whole body as a single, balanced organism. Six months of correct diet and I got off all meds (I was bed-ridden for a year, had all my lower vertebra fused, and was on the heavy drug Enbrel!). I've been in remission now for 8 years, and skateboard everyday at age 53! Find someone in your area. In the mean time, go on a low starch/low carb diet for two days that is absolutely devoid of all gluten and lectin. You will see be amazed!!!

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  • Posted

    Brings back memories. Had AK for 35 yrs. My Dr in the day did blood work for marker, crp and sed rate. Inflammation very high and positive on bl27. I then had sacral standard xray. Showed shadows which confirmed had AK. Indocin worked couple yrs then started effecting kidneys. At first, radiologist blew diagnosis, but finally got a Dr that actually wanted see xray. Get a second set of eyes on tests. Good luck
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