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AS/arthritis sufferers out there

Feb 16, 2016 5:12 AM

Was wondering if anyone else is diagnosed with AS. Having so much trouble finding things that work for me. Just when I think I have it somewhat figured out I have another flare up. Any suggestions of things that have worked for others would be great. I actually am having most of my pain in my neck right now. Last night I just went to turn and my whole neck spasmed and now I can hardly move. Any exercises, meds, special pillows people are using that work??

Feb 16, 2016 9:04 PM

I know I have this as well! Are you on a biological med? Like humera or something like that.I use Zanaflex for neck muscle spasms, I can't use heat or a heating pad, it just inflammes me more..I love ice it helps. Glad you are here. Hope you can get some rest tonight..we can talk more later.

Feb 17, 2016 6:22 AM

Hi!
So glad to hear from someone who suffers from the same thing. I am on anti-inflammatory meds twice a day. I know my doctors are a bit confused as to why I complain more about neck spasms since AS usually starts lower in your back. I have done physio to help but sometimes they don't understand that even the slightest stretch can send me I to a spasm. What have you tried? What seems to work for you? Looking forward to chatting :)

Feb 17, 2016 11:22 AM

I also have AS and my Dr put me on the lowest dose of sulfasalazine back in November. Helped a little but I think I could use a little more. I read online you can take 2000-4000 mg. I'm on 2000 want to up it to 3000. My Dr is trying to treat the fibro first because I've been in pain and fatigued since last March.

Feb 17, 2016 11:28 AM

My pain is the worst in my lower back, knees and shoulders.

Feb 17, 2016 4:41 PM

Hi Heather,
What do you find works best for you? Heat is good when I have flare ups. I am also trying baths with Dead Sea salts. I am always willing to try new things.

Feb 17, 2016 4:50 PM

I like baths with Epsom salt. Acupuncture helps me. I go to a Chinese guy Dr. Gee. He can tell where I am in pain by touching and adjusting my back. Then he also uses something similar to a tens machine also on my back then does my knees. My pain management Dr. also gave me a tens machine to use at home. I am also going to start aquatic physical therapy. I've been so tired lately I haven't started it yet. Ice is good too.

Feb 17, 2016 4:53 PM

I have done accupuncture before and I want to try it again. Ice tends to stiffen me up. Aquatic physio sounds awesome I know things like that are supposed to be super gentle on your joints.

Feb 17, 2016 4:57 PM

Yes when my Dr suggested physical therapy I put it off because I didn't think my body could handle it so I put it off but then I looked up on the Internet to see if there was any aquatic physical therapy because my dad had done that in Florida and it really helped him so I finally found a hospital nearby that does it so I'm going to start it soon I've just not been sleeping and I'm so exhausted. I love acupuncture I haven't gone in a while but I'm definitely going to start going again and I love Dr Gee the guy who does it he's very funny.

Feb 17, 2016 4:59 PM

That's awesome. I should see if the aquatic physio is offered around me. Does the pain keep you awake? I find I have a lot of trouble sleeping too. Can never seem to get comfortable. And I am still on the search for that perfect pillow!

Feb 17, 2016 5:04 PM

I haven't slept more than 3-4 hours at a time in like seriously 14 years. I wake up if just for a minute and go back to sleep. But I never feel rested because of broken sleep. Sometimes they came to me out and sometimes I think it's because I don't sleep well at night and then I sleep during the day and it breaks up my sleep anyway

Feb 17, 2016 5:04 PM

Or I'll be up till 3 or 4 or 5 in the morning

Feb 17, 2016 5:07 PM

That is very frustrating. I have so many nights where I wake up and can't get back to sleep. It really affects my pain and my mood. I agree that the broken sleep can be the worse. I used to take sleeping pills but they only seemed to help short term. I have had some success with a nighttime herbal tea. I also know I should try to exercise more because that helps with sleep but flare ups really make that difficult!

Feb 17, 2016 5:21 PM

I agree. The thought of exercise right now scares me because of the pain I'm in. I'm a teacher in NYC and since March of last I had to stop working and I did not know that my Union gave disability so I was getting paid here and there but not a lot so I want back to work in September and I lasted until Thanksgiving and then my doctor and I decided in January but are you had to take the rest of the year off as well. I just should have never gone back but my husband and I were totally broke because he had some health issues as well. So now I'm out on leave but I'm going to apply for disability through the Union and they give me $475 per week which is better than nothing. And then I think I'm going to take a year off and take a sabbatical for health reasons and I can get 70% of my pay so that would be really good and then hopefully by the 2017 school year I'll be good to go. I know I always have some pain but I'm hoping by then it'll be manageable.

Feb 17, 2016 5:25 PM

It sounds like you really have been through a lot. I am also a teacher (in Ontario). Being on my feet all day can definitely take a tole on my back and bending down to talk to te little kids is very painful. I have the same mindset...I know I will always have some pain but I want it to be manageable! It's just a frustrating and sometimes discouraging journey to find out what works and what doesn't. Just when I think I have figured things out I get hit with a flare up. I really just try to stay positive though.

Feb 17, 2016 5:49 PM

that's very cool that you're teacher also. I taught science for kindergarten 1st and 2nd grade so I would travel to all the different classrooms with a cart I had to have all the materials on it and like you said the bending over I mean I would drop something and I would have to have one of the kids pick it up because I couldn't do it myself that's how bad it was and I couldn't bend over to talk to them it was just too painful. the other teachers in the school are saying things about me but you know what they don't know how I feel so I guess if you don't have it you don't understand it.

Feb 17, 2016 6:15 PM

It's so true, that is why I already love this app because unless you have chronic pain you just don't understand. People don't always know by looking at a person which can sometimes make it harder. They think we are just complaining about a "sore back or neck" ...if they only knew!!

Feb 18, 2016 8:51 AM

@green23 this app is really great because AS isn't too common and when I saw your post I thought it was great to have someone else to talk to about it. I'm really hurting in my knees, back, hips, both sides and both arms. Definitely AS symptoms and not Friday.

Feb 18, 2016 9:01 AM

I use a water pillow! I got it at my chiropractor... It's amazing! I also have an equally amazing pillow that I got from the SleepNumber Bed store. It's a super comfy COOLING pillow.

Feb 18, 2016 9:38 AM

Yes I have had quite a few mri's and X-rays.

Feb 18, 2016 12:31 PM

What kind of water pillow? I am desperately looking for a good pillow.

Feb 18, 2016 12:51 PM

Green, do you have disc problems as well.. Talking about water pillows, I miss my old waterbed..lol

Feb 18, 2016 3:01 PM

Terri, a waterbed sounds lovely! Lol. I do have disc problems. Upper neck is where I seem to be getting the most pain right now though. I have a pretty firm pillow. I'm wondering if something softer might be easier on my neck.

Feb 18, 2016 3:11 PM

For me... I need the support to be kinda firm but also to kinda surround my head, neck, & upper back. I have a "chiroflow water pillow" ... I just checked Amazon and they have them! Lots of choices & they are less pricey than the one I got at the chiropractor! 😡 sometimes I even sleep with the water side facing up!

Feb 18, 2016 3:34 PM

I also use a "Z Gel Memory Foam L-Shape Pillow for Side Sleeping Comfort" and on days I use that, I also have a body pillow, so my knees don't ache, & my back doesn't hurt so much in the morning.

Feb 18, 2016 3:47 PM

Fantastic! I will definitely look into those pillows!!

Feb 19, 2016 7:21 AM

Could you tell me what AS is?

Feb 19, 2016 11:24 AM

Yes it is ankylosing. Sorry just too long to type! Lol

Feb 22, 2016 4:49 PM

So frustrated! My neck has spasmed again. This time I was just reaching to put a piece of paper up on the board in my classroom. I used a new pillow last night and I'm wondering if that irritated it. I find my neck and back react to everything even if it is potentially a good change (like a better quality pillow). I have tried heat but nothing is working. I am scared to even try stretching because that can make it worse.

Feb 24, 2016 7:52 PM

I can not do heat, it inflammes the area tooo much..ice packs work for me!!!

Feb 24, 2016 7:54 PM

When I say neck, I mean neck and upper back down past the shoulder blades and both sides of ribs...upper torso mainly however my lower back , the hips really are giving me fits at night and in the mornings

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