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Fusion

Frepar

I have full fusion in my neck area. I have no mobility in that area— up or down, left or right, side to side. I have lost 4 - 5 inches in height due to forward fusing .

Since the fusion became complete I have hardly any pain . As it was fusing it was horrible—- just touching my chest was painful.

I experience tiredness and a hard time getting full deep breaths. Since Covid I have become very sedentary also.

Is there anyone else fully fused? I would love to hear of your experience and symptoms

Kitten66 Member
hi Alicia many thanks for your good advice I will try sleeping on one feather pillow see how this goes for me. I hope your OK and sending hugs your way.
Kitten66 Member
hi as far as I know I've no fusion in my neck but the pain I have in my neck is excruciating its painful turning each side also looking up and down and sleeping is incredibly difficult. I'm just newly diagnosed with AS so looking for a bit of advice on what pillow is best to sleep with etc. I'm doing regular exercises but still in agony it's so frustrating as you all know. Started on humira injections only had 2 so no pain relief just yet. My spine hips ache but it's really my neck that's the worst at the moment. Any advice would be fab. Take good care
1. alicia134 Member
  
  I have exactly the same pain. Biologics should help. I have already had 2 long needle infiltrations in my C vertebrae and that provides some relief, but only temporary.
  I sleep with a flat feather pillow which I find to be the best. Traction helps, so I do yoga every morning with a lot of down dogs. Be sure to take high dose ibuprofen as soon as the pain starts, don’t wait. Prop up your computer screen so you don’t have to look down. If you’re on phone or tablet a lot, put pillows behind your head so you’re not looking down. Watch tv straight on and not to the side, don’t carry heavy purses on the shoulder, use back pack instead. My biggest help is my physical therapist, she does pressure point therapy to release the muscles of the neck.
  It’s such a horrible pain,
2. Nicky-Flikas-aks Moderator & Contributor
  Hi @Kitten66
  
  Welcome to the community! I am sorry you are in so much pain. I know it's not fun at all. But I promise there will be better days a head. You will slowly find things that help in lowering your pain. What I find is biologics can help once you find the right one. I know you mentioned you started on Humira. I would give it some time. Sometimes it can take a bit time or can work slowly in helping. We have many different articles on our website thought this might help a bit. Sending you hugs and strength. https://ankylosingspondylitis.net/search?s=humira
  
  Nicky (Team Member)
Lawrence Rick Phillips Moderator & Contributor
I am mostly fused, but I had it done as a result of surgery to correct the forward lean.
Steve Tuffin Moderator

Hi there. Thanks for posting. I am not fully fused; I have a very limited amount of movement in my neck. I can move left and right, about 2" either way. Up and down is almost zero. I get a great deal of pain around that area still. I'm getting it right now as I type. The pain is radiating down my right arm, under the armpit and into my elbow. It's a pain I know, from years of having to put up with it, will pass in a while.
I don't get fusion pain these days, probably for the same reason as you. I get plenty of pain trying to keep my head up. I use a PC a lot in my work and so I must pull my shoulders back if I want to see what I am doing. That causes all sorts of pains. Plus, there are the little problems that non-AS sufferers wouldn't be aware. For example, I wear bi-focal glasses. The only way to read my screen clearly is by looking through the lower section of the glasses. To do that you have to pull your head back. And, of course, that causes problems. To be truly comfortable while using a PC, I'd have to have the screen placed flat on its back on to the worktop.
My breathing is okay most of the time, so that's a blessing. The tiredness can be overwhelming, as I am sure you and anyone else suffering with AS will know. It's so difficult to describe the level of tiredness to someone who hasn't experienced it though. It’s not just a matter of feeling tired. It's that feeling that you are on the verge of total collapse. Fortunately, the tiredness ebbs and flows so I get a break from it.
That all sounds a bit miserable, so I am sorry about that. Believe it or not, I am fine with it. It’s part of my daily life now. And much of the time I am only vaguely aware of these things. They have become like background noise.
I hope you are well.
Best wishes
Steve – Community Advocate
1. HeidiCab Member
  
  Hi Steve,
  
  Thanks so much for sharing your story. May I ask if you are on meds currently? I'm trying to decide if I should go off entirely or press on. I'm still fairly new to this.
  
  Hope you feel great today!
  Heidi
2. Nicky-Flikas-aks Moderator & Contributor
  Hi @HeidiCab
  How are you feeling today? What treatment are you on?
  
  Sending you warm hugs,
  
  Nicky (Team Member)