Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Pain is out of control! Need ideas for relief.

Hi everyone. I hurt sooo bad, I ALWAYS do. But today is horrible. I just can't get relief no matter what. Anyone have any ideas?

I am not on any AS meds yet as I'm newly dx'd. I have appt with rheumy on Thurs this week. I can't take NSAIDS because I have severe asthma and NSAIDS will trigger an attack. I take pretty strong pain meds, flexeril, and use a heating pad. The pain is still real bad. The only thing that offers even a little relief is the heating pad, and I can't be on it all day.

The pain is in my thorasic spine (as usual) and goes into ribs and around to the front. I also have developed bad pain in my neck and my neck is VERY stiff.

About 2 weeks ago I was on a medrol dose pack for my asthma, and I had an allergic reaction to fentanyl so I got a steroid shot. These steroids seemed to help my pain. Should I call my doc and ask for a steroid to be called in or maybe get another shot?
What do ya think????? PLEASE..........anyone,
Thanks,
Meg

Hi Meg

WELCOME to the site. Have you tried soaking in the bath tub with very hot water?? That can help a lot with the pain. I wish there was more I could do to help.

John

Thanks John! Yeah I've tried the tub and it does help for a bit usually, just not today.

I wish you could help more too....like take all the pain away!

Thanks Again,
Meg

Meg

Quote:

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I wish you could help more too....like take all the pain away!

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If I could I would trust me.

John

Hi Meg,,,, heating pads, hot showers...and creams like Ben Gay for immediate muscle relaxants....but try the no starch diet right away, take supplements like flax seed or fish oil for inflamation, and ask your rheumatologist about biologic meds like Enbrel, they stop the inflammatory process in your body...stopping the pain afterwards...I've done it and it helps...

Always tell the doc what you are alergic to... I do not take Tylenol and yet it is in many pain meds, I've had to go back and refill scripts using Advil derivatives...Tylenol or generic versions can hurt your liver badly so I don't take it...

Peace, hang in there and keep posting!!
Linc

Thank You Linc. I will look into the no starch diet asap. I will also try Ben Gay cause I have it here.

Again....Thanks,
Meg

Hi Meg,

I definately know how you feel. Neck pain is horrible. You have already discovered the heating pad which I've found is helpful. I also have a microwave heat pack that I carry around like a baby and his/her favorite blanket. I've found that the ones with the handles on them help to provide more heat where needed on the neck.

I've found that a lot of my tension in the neck actually comes from my shoulder. My boyfriend will squeeze the muscles in my shoulder while I move my neck around and it will snap crackle and pop. Doing this has helped tremendously ever since I discovered it.

If your meds seem to be taking a while to kick in, I've discovered that hot tea will help them kick in sooner. I'm not sure how safe this is.. I'm sure it falls somewhere along the lines of crushing or chewing your meds which is a definate no no. But I think it should be ok as there are no warnings not to drink something hot. lol Hot tea also has the benefit of being relaxing and can warm your neck muscles from the inside out.

Flexeril doesn't seem to work the best for me. It maskes me really drowsy. Soma helped me a lot but now I'm wondering if I might be dependant on it. It also doesn't help me sleep as well as it used to. Ladybuggie, another member also has neck and thoratic pain and Soma seems to help her some. Hopefully she will post and tell you about it.

Being non-tolerant of anti-inflammatories might be a blessing in disguise. From stories I've heard they can do more harm than good. But they have helped others. We just are all so different it's hard to give you definate advice. If you have a diagnosis of AS, and you are non-tolerant of anti-inflammatories. You are a good canditate for biologics such as Enbrel and Remicaide and I would definately at least give them a shot. Especially if you have good insurance and only have to pay a co-pay. They have been a great help to several members, not only with pain reduction, but with reduction of the fatigue that can come with AS. Not everyone responds well to them though and the positive effects may only last a few years.

When all else fails, there's always chocolate. Hehe I think my boyfriend read one of my posts while I was sleeping where I was longing for a massage and wishing I could get to the store for chocolate because I awoke to a massage and then he went to the store and brought back some chocolate strawberry icecream! I'm sure it helped in my recovery. lol

All joking aside, when I have bad neck pain, there isn't anything that will help except getting to sleep which is a challenge in itself. I literally have to pace and pace and if it works, I'll wear myself out, if it doesn't, I'm soon hugging the toilet... throwing up from the pain.

Hope you find something that works for you soon!

Sharon

Hi there,
I always find a hot bath works at least a bit, but heat packs leave me crippled! A hot bath to increase movement, followed by an ice back on the worst areas to decrease inflammation (or at the very least, numb the area) works really well for me.
I get the rib pain too, haven't found anything that helps with that yet. Do you have difficulties breathing in the morning? People tell me it's anxiety but I think I get anxious AFTER waking to discover I can't move and can't take a decent breath...
Take care,
Katy

Hi, Meg...

I'm sorry you're going through such a bad time now. I'm also currently coping with a lot of thoracic pain, and there are days when my entire rib cage is inflamed--that's the worst! Like other members here, I go the hot bath route and add Masada salts...they're dead sea salts that you can usually find at health food stores or holistic pharmacies. When combined with water as hot as I can possibly stand it, they help me more than Epsom salts or plain bath water alone. (I only wish a had a deep tub that I could sit in up to my neck and barrel of salt!!)

I've also been wanting to get a Thermaphore heating pad. It's a medical-grade heating pad that I've heard provides a more intense heat than a standard pad, which isn't as effective (or hot) as I'd like it to be. The Thermaphore also comes in a large size that covers a lot more area than a standard heating pad. It's a bit pricey, (like $75), but I WILL get one someday!

In addition to systemic inflammation, I also experience a lot of muscle spasms, so I spend in inordinate amount of time rolling around on a tennis ball. I don't have anyone to give me a massage, so I do the best I can to hit all of my pressure points, which really helps to ease the spasms. A Goosebumps massage ball (a very hard plastic ball with rounded "goosebump" spikes all over it-- check them out on eBay) can also be very effective--but it hurts like hell when you push yourself too hard against it. I've also seen curved, cane-like devices that can help you stimulate your own trigger points and relieve spasms. I have a lot of neck pain that is often eased by pressing on a trigger point in my shoulder. I need to get one of those canes.

Diet-wise, yes, try going no-starch and eliminate other toxins such as aspartame (diet soda). Many people notice at least some improvement within a week. I take Kaprex by Metagenics which is a natural anti-inflammatory that provides me with some relief. Omega 3's in the form of fish oil or flax seed oil are good for you and calcium/magnesium supplements can provide some pain-relief as well-- just don't take more than the recommended dose, as too magnesium can have a laxative effect.

Lastly, as much as you may not want to...keep moving. There are days when I feel that I can not possibly even THINK about getting out of bed, because I'm in too much pain...but getting up (s l o w l y) and into a hot shower...or forcing myself onto the floor with a tennis ball....as much as I DON'T want to in the moment...is better for me in the end than staying still. My new mantra is...."Use it or Fuse it!".

Hang in there, and keep us posted. There's a lot of wonderful support here, and if nothing else, at least we can all empathize with you.

Take Care!

Madison

Hi, Meg:

Barring any other health problems, I suggest drinking a full bottle of magnesium citrate solution--just like the pre-colonoscopy cleanse. After that, some borage seed oil and cold-pressed extra-virgin olive oil immediately before retiring (5-8g total; some salmon oil, if possible also). 2-10g vitC (test with iodine to make certain there are no starch fillers present), 1400IU vitE, 100mcg selenium, and vitB5 (pantothenic acid) 20mg.

Then approx 4oz for each of three consecutive days, all the while following total starch and dairy exclusion. And never eat fried foods again! Avoid flour products as much as possible and eat only aged cheeses or some Stonyfield Farms yoghurt ( 2oz 2 times daily is much better than 4oz at a time). 6oz unsweetened concord grape juice late mornings and again late afternoon, to avoid serious starch-withdrawals.

Don't hesitate to visit the NSD Forum so you might avoid flares in the future.

Good luck with it,
John