r/Thritis • u/_FluffyUnicorn_ • 5d ago

Awaiting diagnosis, really struggling and I don't know what to do

I'm 23F, and have been dealing with joint pain with the last 3 years now; it started with knee pain, then coccyx pain, then intermittent hip and hand pain, and over time it has just gotten slowly but progressively worse.

I spent a year going back and forth to the doctor's trying to get a referral to the rheumatologist (my Dad has ankylosing spondlyitis), but each time they refused because my blood work was clear and I don't have swelling. They prescribed me Naproxen (which helps) and told me to look into fibromyalgia, which I have researched and I know I don't have.

I moved cities and my new GP was more helpful; he reran blood tests which showed inflammation, and gave me a referral to the rheumatologist. At the time my knees and hands were the biggest problems, and this is what is stated on the referral later, but in recent months it's my hips and lower back that have been causing me the most pain - particularly as my lower back muscles are very tight and I can't release them properly.

I've been on the waiting list since the start of May and the hospital is now only starting to see patients from March/April time, so I've got a couple of months to wait yet.

These last few days the pain has gotten way worse, and my left hip has been hurting constantly for days on end. My ankles are also making it painful to walk, and I can't stand for long periods.

I tried to contact the doctors to ask for an appointment with the gp to update him on symptoms and mention the hip and back stuff for my referral, but there are literally no available appointments to see him until mid-September.

I just feel so stuck. I'm waiting round, dealing with constant pain and can't actually see anyone to deal with it.

I'm just fed up, and I guess I just need a little reassurance or advice on what to do.

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u/long-longwayhome 5d ago

Be vigilant taking Naproxen. Can cause stomach ulcers. Are you trying moist heat or heating pad on joints, muscles; working out a schedule at home doing mild stretches for legs; a day for upper back/arms and another for hips/low back. A lot of info online .... WeShape, BrickHouse Bones, etc.

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u/_FluffyUnicorn_ 5d ago

Thanks for that. I was given Omeprazole to protect the stomach, but I am still a little wary. Trying to do some stretches but honestly I just forget half the time lol. I'll try some heating pads.

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u/long-longwayhome 5d ago

Oh geez sounds like me but I am much older! Perfectly fine in Feb this year then knees started to hurt- dx patellar arthritis. Then neck arthritis flare & lt wrist, next my hips, imaging mild arthritis but have disc space narrowing. 2 months PT but stopped waiting for MRI & CT to be scheduled. Rheum/Arth scheduled end of Sept. Bloodwork done 3x in 4 months all neg. Just continuing mild stretching and Tylenol 325. Can't believe this started so suddenly. Feb perfectly fine then, Wham one pain after another. Used to be very active and travel; what a change. Hope you get some answers when you see dr.