Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group really feeling sorry for myself

I'm just having a heckuva time here. Is it normal to be in this much pain? My SI joints hurt too bad to walk, my shoulders are on fire, I keep getting stabbed between my shoulder blades, I can't breathe from the pain in my chest and back, and now my small joints are acting up again. I had a pain doc give me the 50 fentanyl patch but it isn't helping and when I called to say it wasn't I was given this crap about needing to find a doctor closer to me if I won't get acupuncture which the doctor told me probalby wouldn't help anyhow. This clinic is only 80 miles away. I live in the sticks of Kansas. Every city is about 80 miles away, for crying out loud! My rheumy will not help because "women don't tend to fuse anywhere but their SI joints". That's why my neck is stiff and on fire. I must have looooong SI joints! He won't do any x-rays because a bone scan a year ago didn't show anything. Also he says with IBD spondyloarthropathy fusion anywhere but the SI joints is rare. No, it isn't. The only difference between AS and IBD-spondylitis, according to the millions "ASK THE SPECIALIST" thingns I've asked, is that women and men get it equally, there is less eye involvement, and fewer have the HLA-B27 thing. Fusion all along the neck and spine are possible. Most sources say that there is no difference at all between AS and IBD-spondylitis. What is he tripping on?
So am I weird to be hurting this much? Death has never looked so good. I don't know what to do at all. My primary doc knows nothing about this and keeps putting it in my files that I have fibromyalgia even though I asked the rheumy if he had ever told her that and he said no. He looked really confused about where she got the idea, since my pain is so specific. The pain doc just wants to stab me full of holes, and my rheumy seems to think I should be able to run the Boston Marathon because women get spondyloarthropathies milder than men. There are very few doctors to switch to out here. Unless you are a cow. THere are millions of cow doctors out here.
--Heather

Heather,

I wish I lived closer to Kansas, cause I would give your doctor a much needed attitude adjustment. Seriously girl, you need to find a new doctor. The one you have is a complete idiot. I wish I was closer, cause you need a hug, too. I'll write more later, just wanted to send you some good thoughts and let you know I care.

Hugs,



Cindy

Heather,
I am sorry that you are in such pain and seem to have no one from the medical profession that will address the task at hand. You will hear of several things that have helped people get relief. NSD seems to be a common link with remission. My young friend, you must tkae care of yourself first. No one will do that for you. It is not selfish to do what is best for you, so that you have something to give to others. Yes, I have despaired of life. And I have considered how nice it would be not to have such terrible pain. But there are so many blessings and joys that mean so much to me I will not give them up. I choose to live and to look at the wonderful things in this life that many people do not have opportunity to enjoy.
Everyday, I choose to live. I choose to talk to each muscle and each area of pain and rebuke it as something that will slow me down but IT WILL NOT PREVENT ME FROM REALLY LIVING! In choosing ot live I laugh more at the tings in life that are free. While in pain I am thrilled in a conversation with my grandkids and my son in laws that love my daughters. I laugh at deer that run in my yard and kids that talk abut school in a way that brings back memories.
I choose to live because as a limping funny looking man I can bring hope to those who are crushed by things far less serious that what we endure everyday. I chose life and refuse to give in to things that would take me away from my goals in life.
While in pain, do not forget that you are loved and that you are a valuable person.



Lon

Hi Heather,

I am so sorry to hear about the struggle you are having with the pain and then the pain your Dr is causing you. Like Cindy said, I wished I lived closer to you so I could help in some way. Even if is just a hug and to tell you that you are a lovely person and needed in this world. I am so glad that you decided to post this message so we know what you are going through and we all can give you the love, prayers and support that you need. I do think you need to find a new Rheumy and I am sorry to hear that there are so few in your area. I hope you find some relief from the pain soon! Keep us updated to let us know.

Take care and huggggggs,

Lisa

Wish I could offer some help but all I can do is commiserate. The foolish notion that Doc's have is that if no changes show then there is no dramatic pain. Well my pain is always there but some of my sharpest spasms endured when it was obvious from my X-rays and tests that nothing was wrong with me. So of course I was crazy.
I have gotten relief from acupuncture and others haven't its all trial and error. My streching has minimized my upper back-between shoulder blade pains and I know if I sit in a chair that is not elevated or sofa without a pillow or lumbar support my lower back is going to hurt the next day. Day to day we all manage our own cases and Doctors are just there for comic relief and every now and then they hit a home run. Sounds like your current guy is striking out. Feel sorry for youraelf whenever you want just as long as you share it here.


stevec-they also serve who stand and wait

Hi Heather...
Sorry you are not feeling so hot....I feel your pain...
I'm in the midst of a terrible flare right now!! It hurts like heck...and the meds aren't cutting it lately. Tried the NSD with little result. I wish I had some of the success some of the NSD'rs out there have had!!

Sending you a (((((((((((((((big bug hug))))))))) your way...
if you were in Texas...I'd reckon I'd come rescue you...not that you would get much rest with these two divas in the house...
Sofia and Gianna...my girls...
they are spirited little chickadees !!! Hmmmm...not sure if you'd actually feel better...you'd probably be beggin' for the tranquilizer gun...

Askickin'buggie

Heather,

I think every one has days like that, you've got to try to remeber better ones and keep smiling. Lately when things are getting me down I try to organise things that will keep me happy when I'm sad. Last weekend my boyfriend and I went away for the weekend, we stayed in a beachside cottage and had a fantastic time, I think those memories will keep me going for a while!!

I'm only new to this website myself but every one here is really supportive and all you need to do is post a note and everyone tries to help out with whatever problem you may have. Stick around here so we can all help you out.

Hope you're feeling a bit better try to keep smiling,
Take Care,
Rose