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What helps me feel better....
#210545 06/15/11 05:29 PM
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Just reading through the posts and someone asked if it ever gets better.
Everyone has a different path and a different prognosis with AS. But I just wanted to share today I was walking at lunch and realized I'm proud of myself as I think I've figured out, for now, what works for me.

I thought I'd share what's been working, also as a reminder for myself for those bad days! I hope this continues to work for me and perhaps can help others. I suggest others make such a list too, it really helped me and perhaps your list can help others! smile

1) Etodolac 400mg prn (mostly twice a day) and Flexeril 5mg PRN
2) Realizing the above medications have knocked out my rib pain almost totally, which was my worst pain. Now I only have the rib pain when I run hard, so I don't run too hard.
3) Realizing now I only feel horrible during my period, explained to me as inflammation increases during this time for women.
4) Getting a tempurpedic bed and sleeping with a pillow between my legs if on my side, BUT really learning to sleep on my back has helped tremendously.
5) When it's 7am on the weekend and I wake up in pain but wish I can sleep in - Suck it up and GET OUT OF BED. If I lay there longer I feel aweful for HOURS. If I get out of bed, the pain dissapates in 15 - 20 minutes
6) A Heating pad is a god-send!
7) Walking when my back starts to hurt during the day
8) Focusing my energy on loving what I have - my husband and my dogs!
9) Doing what works for me - I dropped a workout partner because of this! I now work out alone, which means yoga became my friend. I may of lost muscle tone but darn it I feel better without lifting weights
10) Stop complaining to my husband that I hurt. He gets it, he knows, he'd rather I shut up about it, haha, harsh, but true. And now I feel better
11) Still plan hiking vacations and know I can just take extra meds if I hurt. Lots of extra meds --just keep up on the liver/kidney tests!!!!
12) Stop drinking alcohol, and feel so much better because of it. (I didn't drink that much even still I feel better limiting myself to only 1 once in a while)
13)Don't wear flip flops or heels if you're going to walk a lot. Suck it up and wear sneakers even with that cute top and shorts! Buy comfortable shoes, not the cute ones.(This was huge in helping me get over heel and arch pain)
14) Massage doesn't help me. As much as it feels good and I swore it did help, I realized it made me feel worse. Accupuncture is better.
15) Get a car with heated seats!
16) All of these things have helped to decrease my anxiety about this disease. Yep I feel pain, sometimes all of the time, sometimes not for days (except the morning of coures). But to tell you the truth it's become a part of me without over taking me as it had last year.
17) Use proper body mechanics, especially when sitting all day at a desk! A back pillow helps!
18) Eat a light lunch at work. For whatever reason a big lunch at work upset my stomach which contributed to rib pain, even with Etodolac. I don't have the answer for these things, it's just trial and error. Maybe I have IBS too, who knows, I'm not worried about it if all it means is I have to eat a light lunch if I'm going to be sitting at my desk all day.


I hope this is helpful. It really helped me to realize what I've learned over the past year as I worked hard at accepting my new reality.

Good luck!

Re: What helps me feel better....
Jdog #210547 06/15/11 06:25 PM
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Great list. I think its quite important to do that kind of list every now and then. I could probably do with doing one for myself. I know I did make huge strides at one time nearly two years ago, and I'm probably keeping up a lot of that stuff anyway, but it would be nice to remind myself - especially as I still don't have any doctor who I really trust that is working for me.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: What helps me feel better....
cemc #210557 06/15/11 07:03 PM
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Good list! I especially like #17. Do you make sure that you get up every 20 to 30 minutes? Even if you can just stand up for a little bit it will help. If you can walk around a little, even better. This is true for everyone's back, even those without arthritis.

Anyway, really good to hear that you have found ways to manage your condition.


Brenda

undifferentiated spondyloarthropy, HLA-B27+, iritis, Vit D3: 6000 IU/day, trochanter bursitis, Joint Hypermobility Syndrome, migraines, SI joint dysfunction/hypermobility, DDD L4/L5 and L3/L4, straightening of cervical spine, impaired glucose tolerance, sleep apnea.
Re: What helps me feel better....
poodlegirl #210563 06/15/11 07:38 PM
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AWESOME LIST.

H.


1998-2004 Rheumatoid Arthritis, remission 2004-2010, March 2010 to May 2014 (RA, AS, Inflammatory Arth, PsA) Enbrel user-use 25 mg pre-mixed 3x a week.(pre-mix has no latex)(Allergic to "Sure Click Enbrel"-has latex) Remicade June 2014 to current (Grandfather had AS, PsA) "We will intuitively know how to handle situations which used to baffle us."
Re: What helps me feel better....
diehardhusky11 #210583 06/16/11 01:36 AM
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That's a great list. Is Etodolac is a NSAID right is like salazine? I never thought of a muscle relaxer. interesting.

number 2 is so true.

I would die if I had to wake at 7am. I get to sleep till 10:30ish before I can't take it any more.

Great list!


Diagnosed: ankylosing spondylitis Feb '10, Crohn's Nov '09, GERD Aug '09, Scleritis May '08, Scoliosis '92
HLA-b27 negative
Surgery: Scoliosis Spinal fusion July '99
Current Meds: Humira, Asacol, Reglan, Dexilant, Tramadol, Maalox, and Xibrom (Bromfenac).
No more sulfasalazine and Iron
Re: What helps me feel better....
outlier #210584 06/16/11 01:52 AM
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One thing that helps when you want to sleep in in the morning is to tale a painkiller at 6 am (or whenever you wake up to urinate) and go back to bed.


Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.
Re: What helps me feel better....
Jdog #210586 06/16/11 01:59 AM
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Hi, Jdog:

An impressive and thoughtful list. Thank You for sharing.

My list has three items that do much more than just make me feel better, but keeping me fully symptom-free (but not undamaged from previous many years of un/mis-treated AS) for over 12 years:

1) Clean gut through fasting and uncontaminated by starches.
2) Antibiotics in cycles
3) Exercise

That's it; simple.

HEALTH,
John



Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: What helps me feel better....
Tacitus #211451 06/28/11 03:19 AM
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I agree with all except for not talking to your husband about it. If I need to vent I know my husband is always there to help or listen. But if keeping your frustration bottled up works for you, then more power to you.


Dx wtih AS in 2010, symptoms started in 2007. Started Enbrel in Feb 2011, so far so good.
Re: What helps me feel better....
ashley87 #211483 06/28/11 04:41 PM
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I try to not say how badly I feel to my hubby unless it is really bad. The everyday pain I live with, otherwise, he gets tired of hearing my complaints. I find that he is more helpful when I do this. He knows I am in pain all the time but if I limit my complaints to the worst pains he will do more for me. He is 83 and has pains of his own. It really bothers me that I can't keep up with him. He is up on ladders, works on the car, works out in the yard, while I sit around with a dirty house surfing the net or reading.

I do mention when I have a new symptom, just in case I have to go to the ER. Someone needs to know what is going on.


Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
Re: What helps me feel better....
avonldy #211520 06/29/11 02:59 AM
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A great list!

My list would be
1 No starches [well LESS these days]
2 No potato/nightshade plants
3 pyridoxine [B6] for less anxiety and strong tendons, less
bladder irritation
4 carnitine [for fibromyalgia aka good sleep]
5 good shoes - flexible like sandshoes - for foot strength
6 light exercise
7 keeping warm
8 good company and good quality food
9 brain exercises
10 counting ones blessings









Last edited by north; 06/29/11 03:01 AM. Reason: I meant plants not pints - really!
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