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TCP

Worsening spine and autonomic dysfunction

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I am one of the oldies that checks into this forum. I have EDS 3, POTS, MCAD, scoliosis, cervical stenosis, neuropathy, secondary adrenal and thyroid deficiencies, IBS, gastroparesis and lots of other issues. I have increasing pain in and around my dowager's hump on my upper back. I am deteriorating fast, with worsening nausea and weakness (especially in my arms and hands), POTS worse/autonmic dysfunction, and my gut (bowel) is being affected, too. I am hoping to see my GP tomorrow to get re-referred to the rheumatologist. Has anyone else had similar issues? Thanks in advance

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@TCP - I have had that too for a year or so. In my case I have arthritis in my neck which causes pain in that area. Physical Therapy has helped me in the past for that pain. 

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I'm rarely active here on this forum in contrary to the poiscenter forum https://poiscenter.com/forums/index.php

I saw your post and experiencing somewhat similar complaints. There is activty affecting my spine, especially the lower back. My spinal health is slowly deteriorating. I'm developing new autonomic problems as well like bladder control problems and urgencies to go to the toilet. Standing on my feet gives me a pressure build up in my spine and my legs get weak. Pressure is being relieved by bending forward in a certain position or laying down. I think mast cells are more frequently active in that area than normal. I also start to develop problems in my neck. My age is 34, male. My POTS improved over the years for reasons unknown but I'm stuck with other issues. My lower spine also makes a cracking sound, when doing that too many times it becomes painful. High ambient temperatures make these symptoms worse, couldn't even do the dishes during hot days last summer because of the weak legs.

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It’s been a long while since I posted, but I have also had worsening autonomic dysfunction during the last month or so. I had been plodding along on a plateau more or less successfully managing symptoms, but then I had a debilitating left temporal headache. I’ve had a daily headache for 9 years, but it has been “manageable” with botox. GI and GU symptoms are jumping in now as well.

last week I got my first severe “coat hanger” pain up my neck, across the shoulders, into the rhomboid. I was bed ridden for days. Nausea and vomitting. This sounds like what you’re describing.

what is helping? My doc gave me a supplemental set of botox injections into my traps, rhomboid, and occipital. Also gave me 3 days of steroids. I just starting to feel my pain level subside. Ondansetron helped my nausea.

The sudden worsening of the rest of my autonomic symptoms concerns me. I haven’t done a lot of reading about recent research since I thought I was sort of stable. But now I’m reading that there is research showing autonomic dysfunction can be stable for a long time, but has been seen to progress into parkinsons or msa. I’m thinking a conversation with your neurologist may be helpful. When new symptoms appear, or familiar ones suddenly and inexplicably get worse, this is new unchartered territory.  We’ve battled and managed these issues a long time and know when something has gone out of whack. 
 

i felt  blessed today to have a doc who knows me well enough to absolutely believe me and work with me to give me some relief.

i wish the same for you with all my heart.

 

 

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