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@agee3003 was a MRI of your head also done to rule out a Chiari Malformation? The doctor you saw were they a neurologist? Did they go over your MRI report and explain the findings? Did they suggest seeing a neurologist? Did your doctor send a referral to the neurologist or was it left up to you? Has the neurologist copies of you MRI images and report? Once you see the neurologist they should be able to give you a proper diagnosis of what is causing your issues.
I have attached a link from the Mayo Clinic website about Syringomyelia and Chiari Malformation. You may find this helpful.
https://www.mayoclinic.org/diseases-conditions/syringomyelia/symptoms-causes/syc-20354771
https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010
Do you have any numbness or tingling in any of your extremities? Do you have the sensation of a cape feeling in your upper back when someone touches your upper back.
I agree with @jenniferhunter and get a PT evaluation as maybe it is your posture.
I would also recommend starting a journal to note what you do each and everyday, how you are feeling after anything that you did physically. You may find this helpful as you wait for your appointment with the neurologist.
I have been journaling since I had surgery for both Chiari Malformation and Syringomyelia. Both were so severe I needed brain decompression surgery. Journaling has helped me in finding areas where I need to adjust to prevent my body from hurting.
I see my neurologist annually for monitoring and my journal is helpful in remembering things that I need to ask about and any questions I may need to ask that I think of between annual appointments.
Just to let you know that before diagnosis and all thru my journey and as of right now, I am still working full time in data entry. I plan to continue until it is time to retire.
It will be 8 years in August and September that I was diagnosed and had surgery. I continue to live my life as I always did with a few adjustments.
Keep us informed as you move along on your journey for a diagnosis. I will tell you it will not be easy, but you cannot give up. Just take one step at a time and not look further down the road then the step right in front of you.
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Thank you for responding.
I am yet to see a neurologist as the earliest I can book is August, everywhere is closed at the moment because of Easter unfortunately.
No tingling or numbness in my extremities, and my back has never had a cape feeling, it’s purely just muscle pain is what it feels like.
My upper arms hurt but it’s when I wake up as I tend to sleep in weird positions. Mainly on my arms.
Once I put ice gel on though when it’s on my shoulders the arm pain stops straight away, so it’s like radiation pain from my shoulders and neck.
My hands burn, but only ever after washing my hands.
I use too much soap, and have had a past of contact dermatitis before, so it could always be that playing up on me again.
It could be my posture.
I work a physical job, lifting boxes, and I don’t lift properly.
I tend to only lift with my back not my legs, no matter how heavy the box is.
It’s fine sometimes, some days I have no muscle pain, then some days I do, all I know is that it isn’t as bad as it was a couple weeks ago since actually doing my physio exercises.
I’ll definitely start writing down what I do in my day and when it worsens.
Putting on ice gel and deep heat tends to really help as soon as it hits my skin which is good.
Thank you, again.