Attacks on Shoulder and upper back

Good Morning Everyone,

I was just wondering if anyone has experienced attacks on their shoulders or attacks during aqua therapy?
I have been recently diagnosed with EM and my flairs are starting to take over my body. They started in November on my toes and now I experience them on my feet, knees, hands, nose, ears and now my shoulders. I had a really bad attack last night during aqua therapy and realize its because my heart rate was elevated but the burning was just so bad and so were all the stares from the other members… I am on 1200mg of gabapentin from a previous cervical spine fusion surgery along with 2 low dose aspirin in the morning and 2 in the evening.
I have not been able to get any help from my GP because she has never even heard of EM before and the Rheumatologist that diagnosed me told me it is extremely rare and that there is not much he can do.

I am feeling pretty lost and scared right now that the EM will just continue spreading to all parts of my body.

Any help or advise would be great :slight_smile:

Rachel

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It’s OK to feel lost and scared. The question now is, what are you going to do about it? If your rheumatologist has told you there is not much he can do, you need to ask him to point you in the direction of someone who can. In situations like the one you’re in, you have to be relentless as your own advocate. Don’t let them close the door on you and absolve themselves of responsibility. Demand they find someone who can formulate a treatment plan for you.

How soon after your first symptom did you start to experience the spreading? It started with my feet last year but suddenly this year my ear and occasionally my fingers will experience flares as well. I’m curious how quickly other areas can be affected.

The spreading happened pretty quickly for me. In about an 8 week span from my first flair it went from my feet to my hands and then kind of just took over my body. So did the intensity of the burning


This is a picture of how bad my hands are getting. I am keeping my fingers crossed that my shoulders are the last place it spreads too.

Hi CarterDK!

You are so right about being your own advocate. I fight so hard to get Doctors to listen to me. I fought for 2 years to get someone to believe me about my neck pain and finally a spinal surgeon took me serious and fused me because my Cervical discs from C5-C7 had degenerated to the point I would have been paralyzed in a year due to spinal cord compression.
I feel like a ping pong ball in this medical system. A lot of Doctore just want to close the door in your face because they do not want to take responsibility for you. I have waited 2 years to get into a pain clinic here and got a call yesterday from my GP telling me it will be another 24 months of waiting. Everyone thinks Canada has such a wonderful medical system but we really don’t.
I will never stop fighting for myself but it really eats away at your soul when you are treated just like a number.

I think most would find 4 years to be an inordinate amount of time to wait when you have pressing medical concerns. Two years is already ample time for the system to address your situation. Have you considered taking your story to the media? You know, pitched as something like “medical nightmare is evidence Canada’s health care system can’t handle rare diseases” type stuff? No one likes bad publicity, especially politicians. Public shaming can be an effective tool to get large bureaucratic institutions to act on your behalf. Once the story is in the public domain, they’ll want to make it go away. If your situation is common in Canada, with people having to wait years for help while in excruciating pain, even that is newsworthy. That’s a story that needs to be heard. Make yourself too big for the system to ignore.