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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. 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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  • 3 months later...

Thank you for your replies and I can identify completely with what you are saying. My neck isn't in great shape but years ago it was my lower back that was the biggest issue. I have a Dowager's hump and C5-C7 issues of stenosis. I have been receiving physio advice over the phone about gently exercising my neck. I have also looked into trying to treat the hump as that is uncomfortable, too. I am wearing a brace for 2 hours per day at present and using 2 balled socks to gently press onto the spiny hump when lying down/high-backed chair, and doing chin tucks at the same time. I am doing this very carefully. The physio said I need to keep moving but not to the point of higher pain levels. The EDS in my case has caused the degeneration in my spine and compression and distortion of the spine is linked to dysautonomia. I am hoping that if the hump subsides then the neck will adjust. I have seen the Dowager's hump flatten down for some people. 

The bladder urgency and back cracking sound very familiar @Muon as does the pain, discomfort in legs/feet with standing. I also have mast cell issues. I think I need to continue to work on my spine as I don't want it to get worse. I have been eating a low histamine diet for some time and doing gentle exercise, but this is more targeted. I hadn't realised how long I have had a tortoise neck (bony neck hump and forward projecting head) until I saw photos of me in my early 40s and realised that was already happening. I hope your back improves for you. You are still young so there is a lot more hope. 

 @nomdeguerre Having EDS seems to be the link for me and many people with EDS have spine and neck issues and also POTS and Dysautonomia. The whole pain thing is enough but having POTS related symptoms make it hard to bear. I'll let you both know how my regime goes. 
 

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  • 4 weeks later...

Well, interesting development. I sometimes think I may be a bit too persuasive with my doctors in advising them about what is going on with me. 

Since I had read about others having this "coat hanger" pain AND my next door neighbor, a physician with PAF who also has it this type of pain, I was convinced it was because of the dysautonomia. An infection never occurred to me...or my doctors.  

I ended up in the ER because of severe pain in my mid back. An MRI and blood tests revealed an osteo myelitis in my C5-6 that had eaten away the disc and a significant amount of bone on each vertebrae. No wonder I had so much pain.

So, I've been in a cervical brace for 2 1/2 months. 2 more weeks to go before I see my neuro surgeon for X rays and a decision about what to do next. The pain, however, is now down to a very manageable level. Whew!

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Oh my @nomdeguerre - that is terrible!!! I am so sorry you had to go through that, I never heard of something like this happening!!! Glad that you are better, and wish your healing to continue. 🥰 

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I have been going through a flare up and it has included neck pain and back pain.  I have been feeling that the two issues must be related.  My autonomic dysfunction has improved over 2 months, and the pain too, but I still have pain.  I was told it is arthritis.  PT was prescribed but I have not yet pursued that.

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