Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Feeling pretty awful right now

I'm having a tough time. I haven't had a flare this bad in at least 3 years. Many times I forget how bad it can get, and will almost think I've imagined the pain I used to have.

A few weeks back I experienced some severe neck pain. This subsided, but comes back easily. For example, if I drive in the car too long... terrible neck pain. I saw my pain management doctor yesterday for my usual 3 month appointment, and told her about it. She ordered a MRI and I was able to get that done this morning. So now I am playing the waiting game.

I will most likely need injections, which I've never had. I'm a little nervous, but I'm willing to try anything to make this pain go away. I hate needles, so I know I'm in serious pain if I'm considering this.

Of course the pain is seriously affecting my life at work and home. I am way behind, and can hardly catch up. Most of the catch up work I need to do, involves hunching over a computer, which is absolutely miserable like this. Of course what do I do.... hunch over a computer and go to KA, but I'm desperate. Other people are compassionate, but they just don't get it.

I am also letting my vanity get the best of me. I know I shouldn't. I've always taken good care of my appearance, and love wearing high heels and beautiful clothes. That's hard to do when the heels make my back scream, the beautiful dress just shows my hunched shoulders, and I have dark circles under my eyes. I know how this must sound, and I'm a little embarrassed to even complain about it. However, if I can't complain about it here, I don't know where I can.

And the fatigue!!! I just want to sleep all day. I am so tired I can hardly keep my head up. Well, I can hardly keep my head up because I'm tired, and because my neck hurts so freaking bad.

As always, thanks for listening. Just putting my thoughts out there helps.

Aly

This won't solve all your problems, but I just bought a pair of these:

http://tieks.com

expensive, but pretty and comfy.

And I find a long flowy skirt and a comfy top to be both pretty and comfy.


Neck issues have been a big part of my problem. I have bone spurs in the facet joints and may need surgery one of these days.

With that said, I can't drive in the car without an ice pack on my back. I think it has something to do with the way the nerves send messages, but by using an ice pack on my back, it keeps my neck calm. Really.

i travel with a cooler with ice packs. The hard ice packs (like one uses for food) to keep the soft gel ice packs cold for my back. I use colpacs. Got them first from PT but now on line, cheaper.

http://www.colpac-supply.com/?source=google_ColPac&gclid=CPOl9s2aq7cCFYyZ4AodLS4AYA

I use the 11x14 ones most of the time.

I also can't sit much of the time without either a heating pad or an ice pack on my back.

Yes, heating or icing my back keeps my neck quiet. Odd, but effective.

For my flares, I do a 6 day medrol dose pack.

Though fingers crossed will be on Humira soon.

What kind of injections? systemic cortisone? or cortisone into joints? I've had my neck injected with cortisone and it was well worth it, really did help.

cortisone into SI was also effective for me.

but still, if a biologic can prevent the shots, the oral pred, etc, then well worth it.

feel better soon.

also, ultrasound helps my neck and upper back and other areas a lot.

I can so relate to being from the Heartland and to me that includes Texas. I never thought of Texas as being the South. I grew up two states on top. We all had the same weather, all had to get dressed up just to walk out our doors, hair done, make up done, hair "did" all of it...Just go for comfort and you will find that you won't feel so bad. All that pain add's up and becomes sensory overload...and that isn't pretty! There are some beautiful shoes out there now, NOT high heels are the only pretty ones we were brought up all believing. I have the slouched shoulders and curved neck to so I wear my hair long enough to cover most of it but dang it, we have a disability that causes it. Try to sit up though as much as you can. I have a back brace that helps when I need it really bad.

So many are flaring now because...this crazy spring weather!! All that tornadic weather going on around there is enough to send everyone into a mad flare. Ditto on Sue's advice.

Oh, I know how you're feeling. This crazy weather has me all worked up, too.

I was in Seattle last week on a short cruise to check out a new ship up there and it took me 10 minutes to stand up and get to the stateroom bathroom every morning...not fun and pretty painful.

It's hard to feel "pretty" when you feel "...tty."

Aly - I have horrible neck issues - mine cause dysphonia and dysphagia (vocal and swallowing) problems. When really bad I wear a support collar. I have several, from reinforced to real soft - this last is fine bead-filled. Again, when 'really' bad I take a pain med, Paracetamol/Codeine and an anti-inflammatory, Nexen (not available in the States). Soon knocks it the top pain head. And yes, sitting at the computer does not help any!

Let us know what yr MRI shows.

We are having a worse than useless summer here in the UK; I've just had to put the heating on again as it's so cold and damp and miserable and I am hurting all over. I can remember going to the dr years ago, when I was a teenager and telling him how painful my knee was when the weather was damp and going to rain. His reply? 'Well count yourself lucky you know when to bring an umbrella out'.
Hope you feel better soon

x

Hey Aly,

Hope you are feeling a bit better. Always OK to vent here if helps.

For men shoes are easier... but buying and finding good shoes for me is big task. If I do not have a comfortable pair of shoes, my hips flare and low back as well. A lot of time goes into my shoe purchases (and $), but it is worth it in the end.

Have been there with the depression, hang in there and be sure to talk to someone or come here. Kickas family needs you.

Take care,

Tim

I appreciate everyone's kind words so much! It's just nice to talk with people who understand. Thank you!

Just heard a message from my doctor. MRI showed arthritis in my neck, but no pinched nerve. Will schedule an appt to go see them in person and review it further, along with treatment options.

This is a new development for me. I've only ever shown DDD on X-ray or MRI. Does anyone have insight on this? I'm wondering if I should go back to rheumy now? I've had the rheumy tell me I have so many of the AS criteria (HLA B27+, family history, symptoms started in SI at 19 years old..) that she's basically waiting for imaging to come back with signs before treating me with something like humira or embrel. Also waiting for blood work to show inflammation, which it hasn't done yet. However it's been years since I've had it checked. Got sick of paying and taking time for tests that show the same thing over and over.

My neck has been bothering me a lot lately.It's hard to turn my head without turning my shoulders also. Now it is causing my hands to tingle and hurt. My shoulders, elbows and wrists also hurt, so its hard to know where the nerves are causing the tingling.

I have had the injections in my SI and facet joints in my lower back, but not in my neck. All the lower back injections were easy and worked well. I am a bit nervous about going back for any more though, it seems my PM was arrested for drunk driving after getting in an accident where he was driving over 100 miles/hr at 1PM in the afternoon. I wonder how long he will keep his license.