Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
How to deal when it never gets better
#275644 08/11/16 04:58 AM
Joined: Feb 2011
Posts: 179
B
becca Offline OP
Registered Visitor
OP Offline
Registered Visitor
B
Joined: Feb 2011
Posts: 179
I'm just getting really frustrated. It seems like I'm always having new pains. My ribs in particular. They had hurt on and off before, but they have hurt pretty much non stop for the past six months or so. It just adds to my "normal" pains and its getting harder for me to deal with.

How do you guys cope?

I'm heading back to school in a few weeks and am hoping that will help my mental state....just being back in a routine and getting out more. I had the summer off of school and have let myself sink into a depression....which makes everything worse.

I'm just trying to find a better way to cope with the pain and the fact that things will probably never get better for me


i can't fall back i came too far, hold myself up and love my scars...
Re: How to deal when it never gets better
becca #275648 08/11/16 04:52 PM
Joined: Apr 2012
Posts: 101
T
Registered Visitor
Offline
Registered Visitor
T
Joined: Apr 2012
Posts: 101
Hi Becca,

I totally understand how you feel.I too struggle in so many ways to keep my life together with AS.I also have a 20 year old daughter that struggles with Spondylitis and admire how much she does to feel better. But treatment for us is what has given us some hope. She is very committed to her exercises and diet, we try and get medical massages, physical therapy,etc. She has being diagnosed since 16 years old. She will start her senior year in college in September. So don't give up. Look for doctor or treatments that can help you cope with your condition and achieve your goals.
Best of wishes.


Rosa Sanchez 50 yrs - I was diagnosed with Spondylitis (AS)Jan.2011 and HLA-B27+, Acid Reflux, high blood pressure, Meniers Disease,Fibromyalgia, Pre-diabetic. (Allergic Ultram(Tramadol), Indocin, Toradol, Topomax, Oxy,Diluadid, Remicade, Aspirin and NSAIDS not a choice for me)I have failed ,Embrel, Simponi, Remicade Humira (Once)But just started again on a weekely basis with a new doctor.(Lets hope it helps)
Re: How to deal when it never gets better
becca #275649 08/11/16 04:56 PM
Joined: Feb 2016
Posts: 23
Registered Visitor
Offline
Registered Visitor
Joined: Feb 2016
Posts: 23
Hey Becca - I'm sorry you are having a hard time.

Coping for me personally has many different aspects. It usually means finding a quiet place somewhere to focus and see where the pain is originating. Sometimes the pain I feel is exacerbated by something I ate, sometimes I did too much work in my garden, sometimes I played a little to hard with my dog. I force myself to rest, and plan for those moments by remembering the reasons that I might have ended up there in the first place; I ate an awesome piece of chocolate cake; My zucchini are coming up beautifully; My dog was so silly running back and forth. I laugh and smile.

And of course, you have those days where you just wake up in so much pain that you know you and your couch are going to be best friends that day. I do my best to plan for those days by visiting the library weekly and picking out a book, 3 movies, and a video game that I have never experienced before. I know there will likely be at least 1 day that week that one of those forms of entertainment are going to be needed for, if not all of them.

We just have to take one day at a time, and yeah, we know it's not necessarily going to get much better - but we can get better at how we handle ourselves in those moments that we can't do much else but rest.

We are warriors.
Pain is the bodies' way of releasing weakness.
We can be grateful that we never have to be that weak again.

Be proud, sista.

You got this.


Arthritis issues since youth, back pains started at age 14 (1994). Dx with AS in January, 2016.
HLA-B27 Positive
Other Dx: GERD, Raynauds, Bursitis in Mutiple Joints
Re: How to deal when it never gets better
becca #275651 08/11/16 07:56 PM
Joined: Feb 2011
Posts: 179
B
becca Offline OP
Registered Visitor
OP Offline
Registered Visitor
B
Joined: Feb 2011
Posts: 179
Thank you both for your kind words...it means a lot to me smile

As far as treatment goes.....well basically it is non existent. For multiple reasons I have chose not to treat my AS with meds. I take ibuprofen and Tylenol for pain when I can't stand it anymore. ..that just barely takes the edge off. I thought that most my fusing was done and over with as my hips had completely fused and my lower back is fused as well.

I had both hips replaced five years ago when I was 20. Dr's aren't sure anything can be done for my back (or if there would be any surgeons willing to try).

I just get frustrated as a 26 year old and I can hardly cook dinner or do the dishes without having to sit down and take breaks.

I try to remember all that I have accomplished.....but it is hard to accept that this is the way it will always be. I will always be severely deformed and in pain.

The encouragement from both of you mean so much to me. Thank you for that!

Staying strong and positive is just really hard to keep up smirk


i can't fall back i came too far, hold myself up and love my scars...
Re: How to deal when it never gets better
becca #275653 08/11/16 08:38 PM
Joined: Jan 2016
Posts: 47
O
Registered Visitor
Offline
Registered Visitor
O
Joined: Jan 2016
Posts: 47
Why won't you take biologics? They can change your life.


Early 30's male, HLA Negative, AS diagnosed Feb. 2016, Humira.
Re: How to deal when it never gets better
becca #275654 08/11/16 08:48 PM
Joined: Mar 2013
Posts: 2,177
S
Registered Visitor
Offline
Registered Visitor
S
Joined: Mar 2013
Posts: 2,177
Becca, I'm sorry you are having so much pain. I don't know what has turned you against medications, but I respect your choice and admire your courage.

I have read some good things about using mindfulness techniques to deal with chronic pain. I read an article on it a while back that I can't find now, but this one gives a pretty good overview of mindfulness: http://psychcentral.com/lib/using-mindfulness-to-approach-chronic-pain/

Whatever physical activity you can manage would be good. If you have access to a pool, doing gentle exercises in the water can be very helpful. See if there's a senior citizen center or other organization that has a pool, preferably heated so you can use it year-round.

I know it's hard, but hang in there.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: How to deal when it never gets better
becca #275658 08/12/16 03:20 AM
Joined: Feb 2011
Posts: 179
B
becca Offline OP
Registered Visitor
OP Offline
Registered Visitor
B
Joined: Feb 2011
Posts: 179
I decided against taking meds for several reasons. A big reason is that I don't want to be any "sicker" than I already am. Almost all meds I have taken in the past have had adverse side effects and don't help how they are supposed to. Pain meds (including narcotics) do very little for my pain and they make me sick. Even the anti nausea meds made me sick. I have taken muscle relaxers, high doses of anti inflammatories, and meds for spasms and none of them helped at all.

Medication and me just don't get along.

Ginny, thank you for sharing the link for the article. In ways I already do some of the things they talked about in the article, sometimes I just need reminded just how important stuff like that can be.

Also, I do try to stay active. On bad days I don't do a lot. But I try to make a point to move so I don't stiffen up too much. When I start back to school this won't be an issue at all because all the parking is a quite a distance from the buildings my classes are in. When winter hits i'm gonna have to break down and get a handicap placecard for closer parking so I don't have issues with falling on ice and snow : /

Being stubborn is what has kept me moving and doing so well for being so physically f***ed up. My family thinks I should be in apartments made for disabled people. I live in a second story apartment and have to take the stairs anytime I come or go. Yeah, sometimes it is way too difficult....but it also keeps me moving...forces me to keep moving when I just want to give in and give up.

Last edited by becca; 08/12/16 03:21 AM.

i can't fall back i came too far, hold myself up and love my scars...
Re: How to deal when it never gets better
becca #275680 08/14/16 12:29 PM
Joined: May 2004
Posts: 1,551
K
Registered Visitor
Offline
Registered Visitor
K
Joined: May 2004
Posts: 1,551
Quote:
I decided against taking meds for several reasons. A big reason is that I don't want to be any "sicker" than I already am.



I have been on TNF's since 2004. I am not any "sicker" than I was prior to being on them. I will admit that it seems as if when I do get the bug that is running around it hits me harder than it appears to hit my wife. But with that said Enbrel has been a complete life changer for me. With it life is very nice when compared to how miserable it is without. Please do yourself a huge favor and give them a try. Nothing ventured, nothing gained.


AS/PsA DX in 1988

Retired on disability
in 2005 at age 44
Re: How to deal when it never gets better
becca #275759 08/21/16 06:04 AM
Joined: Feb 2011
Posts: 179
B
becca Offline OP
Registered Visitor
OP Offline
Registered Visitor
B
Joined: Feb 2011
Posts: 179
Ken,
When I said sicker I did not mean colds and bugs and such. I meant just not feeling well and any possible side effects from the meds. My body seems to reject any medication I have previously taken and makes me sick. By sick I mean that I just physically don't feel well. Nausea, pain, fatigue and such.


i can't fall back i came too far, hold myself up and love my scars...
Re: How to deal when it never gets better
becca #275760 08/21/16 11:11 AM
Joined: May 2004
Posts: 1,551
K
Registered Visitor
Offline
Registered Visitor
K
Joined: May 2004
Posts: 1,551
Quote:
By sick I mean that I just physically don't feel well. Nausea, pain, fatigue and such.


It is, of course, your choice to make. I can not over emphasize home much of a difference TNF's have made to many of us.


AS/PsA DX in 1988

Retired on disability
in 2005 at age 44
Page 1 of 2 1 2

Moderated by  ElinAslanyan 

Link Copied to Clipboard
Powered by UBB.threads™ PHP Forum Software 7.7.4