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Hard day, you too? #ChronicPain #BackPain #ChronicIllness

I’ve been having a really tough time with my high pain level it made me think about who else is having a tough time or tough day. So I wanted to check in and see how everyone is holding up with their #ChronicPain #ChronicIllness 🙏🏼
I have support and I’m lucky but I feel really alone with my pain lately. It’s all day, everyday and it’s draining.
Two weeks ago I saw a new doctor for another opinion that my current doctor knows and suggested. My new Dr, Dr Rap, was absolutely amazing. He looked at every scan, record, test, surgery report etc. It wasn’t “if” something was wrong, it was “ok you’re in pain, what IS wrong”. One of the best feelings as a patient is being believed because so many doubt us.
He thinks I have at least one pedicle screw sticking out of my bone, causing pain. He said, “we will make damn sure 100% what is wrong before we put you through any other surgeries”. If it wasn’t covid I would have hugged him, I had happy tears welling in my eyes. Monday I had another outpatient diagnostic procedure for my back, this time with an amazing new anesthesiologist. I found out this procedure is known as the “painful procedure” where they inject the screw head. I had relief for 20 glorious hours and was at TJ maxx all day 😎💁🏼‍♀️
Then the fire fury pain came back x2 as strong in my back and my nerve pain in my leg. It was successful!!! This means surgery 5 to get the screw poking out removed (and some others I no longer need👍🏼) is probably on the horizon very soon, I’m optimistic and eager.
My mast cell is flaring, I tried on a dress yesterday and my entire skin feels like it’s on fire from the inside out. I miss my dogs so much, I’m crying a lot 😢Trying to hang in there!
How is everyone doing? Thinking of you all right now ❤️🙏🏼 #ChronicPain #ChronicIllness #BackPain #Spinefusion #sciatica #MastCellActivationDisorder #Grief #Anxiety #Backinjury #SacroilliacJointPain


Rollercoaster #EhlersDanlosSyndrome #Bloodtransfusion #Lowbloodpressure #Spinefusion #EDSAwareness #Edssucks

This hospital stay has been such a rollercoaster ride. I was having chest pain and it turned out it was because of gastrparesis. That then caused an illeus which also then caused fluids to be aspirated into my lungs and caused ground glass nodules. I also had really low blood levels which I required a blood transfusion for. They are still low. I also had low calcium magnesium and potassium.Then my blood pressure has been low so they had to give me fluid boulises. I’ve been so exhausted and surprisingly not hungry for having not eaten in so long!


Spine Pain?

Chronic spine pain? What is your latest "go-to" item that helps you feel better?
Lotions, creams, heat, ice, meds, massage, gadget - name your current #1 below.
#ChronicPain  #spine #RareDisease  #degeneration   #stenosis   #Nerves   #muscles  #patients   #Parents  #Kids  #adults   #ache   #stiff  #shock  #zap   #spasms   #vertebrae #Spinefusion #congenitalfusion