Hello, I did search on this and found some other useful threads, just need to vent/commiserate.
I have hEDS and bilateral ES, probably vascular, still getting evaluated. I have pain in the anterolateral neck, as expected, along with throat pain/globus, dysphagia. But what’s been worse lately is actually the pain at the BACK of my neck, both sides, right under the skull, and the base of the skull too. I’ve been doing physio/dry needling for the better part of the year once a month or so, and the past month it’s gotten SO bad even my physio is like wtf. I had started seeing a chiro to offset how often I could see my physio - not doing chiro things, just active release and more dry needling, but his style of needling is a little different than my physio’s and I don’t think my body likes it even if there’s a bit of initial relief. I got a massage this weekend and my RMT said my neck/back is so messed up she could feel a 1mm-ish sublux on C3 from the pulling. It’s constant but most mornings when I wake up I’m near tears and all I can think is that I can’t live like this. I’m taking a break from the chiro to see if it helps. I also got my flu shot/covid booster around this time and that probably didn’t help either. Right before the pain got worse I’d had a flare of all my dizziness and vertigo symptoms too, those settled and now the neck pain flared.
I don’t know if it’s from the ES or the hEDS or something else, probably a combination, but I’m just so defeated. My sister just had to trial a cervical collar for her similar issues (we’re twins, yay crappy genetics) and I’m kind of jealous, how sad is that? The idea of not being able to move my neck or to have a back brace to force myself to not move from a proper position so I don’t keep re-aggravating or worsening whatever is going on is so appealing.
I know my posture and use of my cellphone are making things worse - I’m only 4’11" so furniture doesn’t really “fit” me, any tips on ergonomics? Wedges, foot stools, what’s the best way to adjust a set up? I have really terrible eyesight so I’m constantly hunched to see better on my phone or laptop. Help! If I can even just start fixing my posture it’ll help relieve my neck and back so whatever else is going on won’t be as bad.
I’m so sorry that you (& your twin) are having all these issues & are in so much pain, you certainly have a rough deal
I don’t know if you’ve tried sleeping more propped up, it often does help with neck pain, but I don’t know if you can do that with your back? There’s a current discussion about the best wedge pillow:
Best wedge pillow on amazon - General - Living with Eagle
Some members have tried the soft collars to keep their head in a better position, so whether that’s worth trying?
Can you take muscle relaxants, or have you tried them before, it might help a bit?
@vdm has posted alot about exercises to help with tense muscles & posture, that might be helpful, here’s a link:
List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
Sending you a hug and hope that you can find some relief
I’m so sorry for your pain increasing & being intolerable. So miserable for you, @anyothergirl.
Skull base pain is common w/ ES. I had a terrible time with it before my surgeries though mine wasn’t as intense as yours sounds. Mine came & went & came & went & I never did figure out what caused it to flare. It did eventually go away once my styloids were removed. Nerve pain medications would be the most helpful if you decide on drug intervention to help you cope. Those most commonly mentioned on our forum are Gabapentin, Amitriptyline, & Carbamazepine though there are relatives of all of those that work as well. Flexeril seems to be the most common muscle relaxant mentioned. One thing you might try is to lie on your back w/ your knees bent & gently press the back of your head into a pillow or the floor
Do you wear glasses & still struggle w/ terrible vision? My eyesight is getting weaker w/ age, & one thing that really helps me is to make sure I have bright light around the area where I’m reading. I can no longer read in a dim environment & have to keep the light on both my computer & cell phone turned up almost completely to see well when there isn’t enough ambient light.
Instead of bending your head down to read, put your reading material at eye level if possible. This way you can move it close to your face w/o compromising your neck & back posture. I have my computer sitting on a pile of books (primitive but effective & cheaper than buying a stand for it). When I use my cell phone, I sit at a table where I can rest my elbows while holding my phone at eye level for reading, granted that doesn’t work so well for texting/emailing or gaming but it is possible w/ the phone in an elevated position. You can use pillows or cushions on your lap to help support your elbows/arms as well.
Your idea of a stool for your feet when sitting, so your legs & hips can be at approximately 90º angles, is good as that will reduce pull on your lower back, & adding a pillow or lumbar pillow support behind your low back should be very helpful in maintaining better posture when you sit.
@Jules has give you the best resource for postural exercises - @vdm’s extensive list of links to videos & reading material on the subject. This is the type of soft neck brace she referred to Amazon.com : soft neck brace
I really hope some of what’s been suggested helps you.
This isn’t really ES but I just need to talk to people who’ll understand. I spent the day at urgent care. Xray came back with nothing emergent so got Rx for 3x daily T3s and 2x daily naproxen and to dig into my emergency cyclobenzaprine rx. Strict regimen with heat and ice and rest/stress relief. Said I’m most likely just having a hEDS flare and got into a vicious cycle of guarding and tension thats pulling everything out of alignment and making it worse. It genuinely feels like there is something wrong on the left posterior around C3. I’ll share the xrays when I get them just for fun lol.
I actually have cried from the pain three days in a row. The expectation is that this regimen will allow symptoms to abate enough to break the cycle and calm down and then things will naturally settle and align again.
I feel sad. It’s so debilitatingly bad. It feels like there has to be more to it than that. And like, if I feel worse I can go back but it feels like a dead end. I did what I was supposed to, unbearable pain, went to UC. They did what they’re supposed to, make sure there was nothing emergent or threatening, managed what they could, and gave me a conservative treatment plan. I don’t want to dismiss that this could be enough but it’s past midnight, I can’t sleep bc I can’t get comfortable in bed, and I don’t know how I’m going to manage 1-2 weeks like this. I have a message in with my physio whom I adore to call me back tomorrow if she can for advice or possibly an emergency session.
But work is nasty busy and I’m trying to lay the groundwork to ask for a promotion or the PD to lead to one and it’s incredibly frustrating to feel so unreliable. I want to get my work done! I actually should’ve gone to UC yesterday but couldnt bear to miss, and went im today until it became too much and left to go directly to UC.
If things still aren’t right in a week or two I can go to my PCP and push for additional testd and help, and most likely ask about gabapentin or similar while I wait to hear back from Dr O’Connell’s office.
I’m propped up on the couch bc even with the meds lying down juat doesnt feel good right now. Thanks for liatening, fellow spoonies.
Thanks @Jules ! I do have cyclobenzaprine for flares thet I’ve gotten out.
Those pillow sets look promising- I had been thinking I’d like one for under the knees too. I basically struggle with having my head bent forward at all to accommodate a pillow. Making a bit of a nest with a pillow on either side of my head and a third as a cradle between them and that’s been okay. My boyfriend actually has one of those couches that are like two recliners so I may try sleeping there till this flare is past. Will check out the videos when I can. I know motion is the lotion and will help with the guarding but I need a day or two to just rest first.
@Isaiah_40_31 I’m glad surgery helped. I do wear glasses and still struggle - my script is -15 so at this strength it kind of is what it is. I need lights on, but I’m also photosensitive so I favor using dark mode on my phone with good brightness. (Due to the sensitivity, I would have the screen quite dim but have good ambient light in the room and just recently turned up thr brightness and was like ohhhh I needed that! Lol) I need to just start magnifying pages even if i have to scroll more. That will help. Lumbar pullow is a must too. And yes I need to be better at not bending my head/hunching. I get pins and needles in my arms and hands from holding my phone up but there are ways as you suggest!
So sorry that this is a really tough time, I hope the meds can settle it down for you…I slept in a recliner for a while before my first surgery as I couldn’t lie down, but that was vascular ES symptoms. I had a V shaped pillow when I could lie in bed on top of the wedge pillow to take the pressure off the sides of my neck, sounds like how you’re arranging your pillows.
Sending you hugs