Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Beware Whining Post

Hi everyone,
I have not posted much because I have been hurting too much to sit at my computor, and just flat depressed. I was off on short term disability for a couple of months, and got to feeling better. I went back to work two weeks ago, and the badddd pain was back. So I went back on short term again. I am 41 years old and the thought of living like this forever is just unbearable. My doc has me on 7.5mg of Methotrexate twice a week and 800mg of celebrex daily. He did have me on 7.5mg of Methotrexate daily, but I became very sick. He said there was no permanent live damage. So he put me back on just twice a week. I do not believe it is helping and I have a terrible cough constantly. Yes I do smoke, but it is a strange cough, like dry nothing comes up, but I just keep feeling like I have to cough. Also I know why I hurt, but I just feel sick, like maybe the flu. And forget about energy there is none. I take Hdrycodone and it helps but not for long.
My mother wants to treat me like an infant, my husband says nothing at all when I start hurting this bad, and I feel so angry and alone. I know you guys are here, but when I can't sit at the computor, thats out to. I was wondering if I should stop the methotrexate since it does not feel like it is working. Actually nothing is working. I have less hope everyday that I will ever be free from pain. Well better go this is one of those long whining post, but if anyone has any info on dealing with my so called life please let me know.
Debbie

Debbie

Hi! Feel free to whine all you want, we all know what your going thru. I know the depression really well. I get very down and depressed from the pain and the hopeless feeling. So when the doc said maybe try an anti-depressant for pain, said that a lot of times it helps with pain management. Well Ive been on it for 2 months now and good and bad news. I still have alot of pain, bad news of course but good news is I can deal with it much better. I wonder if he knew that one. I sleep really long and harder so that really seems to help. Maybe your husband just dont know what to say about your illness. Have you sat down with info in front of you or have him go to doc with you. I just think men have a harder time dealing with bad things. Or rather showing it is what I mean. Not to offend any male here. Well hope things turn around for you. This place really helps me cause no one really in my family understands much. either. Take care>>>Connie

Hi Debbie,

Sorry you are feeling soooooo Bad. Dealing with the pains and frustrations are the worst for me. Oh, did I mention fatigue? No energy is such a drag. I used to use Methotrexate through injection. Got up to 20mg per week but found that did not do much good. Then was put on Remicade and it was great for the first 10 days. Now after my second infusion, no relief. Frustration is in high gear. I hope that at some point we can get the right combination of meds to keep this thing at bay. Keep hoping and hang in there. I am really trying to live each day at a time as if its my last. Good luck with your Dr's and your meds and keep fighting.

Doug

Don't ever feel bad about "whining"--that's truly what we're all here for! It's important and good to let it all out.

Believe me, I understand about the depression that comes from chronic pain, and about how hard it can be on your relationship. My husband is very supportive (especially since I was diagnosed), but sometime he has a hard time dealing with me when I'm sick because he feels helpless and that makes him angry.

This kind of depression and stress from chronic pain isn't something that just us AS-ers share...anyone know of any good books on the subject that might help us all deal with this difficult stuff?

Ania

Hi! I am sorry you are feeling so depressed and in pain . I recently read 'The Chronic Pain Solution: Your Personal Path to Pain Relief' by James N. Dillard. He has a lot of ideas including medical and alternatives. I found it to be quite helpful (got it from the library). I'm sure there are other books and resources out there as well. Good Luck. McMom

Hi Debbie I am on anti depressants and have found they help at least I sleep instead of tossing about which makes the pain worse just want to say keep your chin up
Sandra

Hi everyone,

Thanks for all your kind words. I am on 150mg Effexor daily. It does work most of the time, but when I am hurting this bad nothing works. My doc right now is my GP, my appointment with new Rhuemy is Nov 19. Its a good thing I am not dying as long as it takes to see one of these docs. Well gotta go hurting pretty bad right now. Again thank you all.
Debbie

Debbie

Hi Debbie,
I'm glad to hear you're getting in to see a rheumy, because you absolutely [bold]should not[/bold] be on mtx every day. The lung problem can be due to mtx and you should get that checked immediately - I ended up with double pneumonia last year from mtx and had to take 5 weeks off work. Don't wait until November!

Like you, the mtx makes me very ill, and although it worked at first, after awhile it stopped doing anything but I still felt horrible all the time. There are lots of other drugs out there to try, but while you're waiting to get in with the rheumy I would suggest getting on an anti-depressant (it really does help you deal with the pain, but you may have to try different ones until you find one that works for your body chemistry - and most take about a month to kick in) and get something that works for pain relief - nobody should have to live with pain. Elsewhere, (briansowee's thread) I've posted that hydromorphone works quite well for me.

My GP manages everything to do with paincontrol and all the day-to-day stuff, and my rheumy deals purely with disease control and modification. This works quite well for me, as I can get in to my GP quickly when something is out of whack, and they communicate by phone if there's something she can't handle.

Oh yeah, and days when I really need to talk on the computer and I'm just in too much pain, I have a large selection of gel-ice packs to freeze my back while I'm up.

Good luck, and let us know how you make out,
Laurie