Still awaiting official diagnosis
Hi all!
Currently struggling as my rheum seems reluctant to diagnose me.It all started about 3 years ago when I started to experience a dull ache in my left shoulder (non-dominant side.) I also had some restricted movement, I was diagnosed with a rotator cuff injury and given pain relief. Several months later, I started to experience a constant dull ache in my left hip/buttock area, the pain became quite severe after resting for prolonged periods of time, especially in the mornings. As the months passed, I found that I was waking up frequently during the latter part of the night due to pain and stiffness. I also started to notice that my ankles and wrists were becoming stiff and painful. After about 18 months, I finally saw a rheumatologist but as I was pregnant, there wasn’t a lot she could do at the time. Unfortunately, my stiffness seems to be worse and I have also now developed thoracic spine pain with rib involvement- the only way I can describe it is like having your rib cage in a vice every morning with spasms. Since having my baby, I’ve had an MRI scan which shows a loss of cervical lordosis, hyperintensity in the thoracic spine and sclerosis around the left SI joint. I have been re referred for physiotherapy, started on Etoricoxib and am having the HLA B27 test tomorrow. However, she is still suggesting that it’s not inflammatory and that it’s probably due to pregnancy despite the referral being put through 6 months before I even fell pregnant (first child.) Anyone got any similar stories that may give me some hope? I’m fed up of this constant pain and feel like I’m being fobbed off constantly. X
Hi Nadine! Yes, the scary thing is, I know that 3 years is a relatively short amount of time for diagnosis! 🙄I guess I’m one of the lucky ones! I had my HLA B27 gene blood test today so will probably be a few weeks before I know the results. Thank you so much for your message of support, it is much appreciated! Glad to know that it’s not pregnancy-related as this is the message I keep getting, so frustrating! Thanks very much for your response, you take care ❤️
Hey there first congrats on your new baby! I’m so sorry you are getting the run around I know it can be very frustrating, from my knowledge and experience most people have waited years for a diagnosis so your def not alone there but your taking all the right steps to getting a diagnosis I always tell people to be your own advocate and never give up until you get an answer to your pain and symptoms people are not just in pain for no reason that’s your body telling you that something is not normal I have 3 babies and I can tell you it’s def not pregnancy related your pain is valid so you keep fighting for an answer. Keep us posted on how your appointment goes tomorrow we’re here for you your gonna be ok no matter what the outcome is 🤗 Sending love 💙 Nadine (Community Member)
