Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Legs are KILLING ME

Yes, I have a pain mgmt doc finally. I am on major narcs Thank GOD. I was given lortab forever and I was scared to death for my liver but nobody cared. It did better for my pain than the NSAIDS but wore off and I'd have to take more and it was a bad cycle. I HATE taking this crap. HATE IT. The stigma. I'm a RN, ok? I used to judge, now I am judged. I swear I'm being punished. So be it. I'll take it ~ I deserve it.
I have been diagnosed w/ possible lupus or some connective tissue disorder, possible AS, Hypermobility syndrome, illiotibial band syndrome, I've had a positive ANA, + lupus anticoagulant antibodies, and on 2 separate occasions (within a six month period which is required to diagnose the syndrome) I've had + anticardiolipin antibodies. Oh... and I always have these strange HIGH platelets but am anemic. Wassup with THAT???
Someone mentioned enthesitis. What is that? I'm sorry. I should be more informed. I seriously checked out for a while.
As for my hip, I should have been more clear. I have a labral tear. I finally changed orthos and went to have surgery with my little MRI in hand and he looked at me and said, "Has anyone spoken to you about this?" I said, "Yes, why?" He said," You've either got the largest labral tear I've ever seen or there is a foreign body there." So, THAT was IGNORED by all my docs until I went to him. So, another emergency MRI on the hip again and whatever was there had vanished THANK GOD... we were thinking tumor or something. Still that darn tear. That darn tear I've walked around with for 3 years, 2 and 1/2 of which my docs told me I was nuts. Couldn't find anything, blah, blah, blah. Then they added dye to the MRI and whalah... the tear.

I guess I need to go to Mayo for a definate answer. Darn it. I just didn't want to do it. I'm so SICK of this mess. SO SICK OF IT. Surely if I go up there w/ all these tests they will find SOMETHING, right? That's my fear. I will go, my family will get all upset.... and bam. NOTHING.

Thanks, guys. I appreciate the support. I'm having a hard time right now. It's this pain. It's gone on for too long and it's too much. I did get a steroid shot and toradol a few days ago and it was a Godsend. I feel a lot better and my little three year old even said something to me which broke my heart. That pain will make you crawl into a hole, won't it?
Thanks again.
Allison

Oh,
And thank you for posting Sherri's post. It sounds wonderful! Hard, but wonderful. It sounds like it was a very long program... three weeks I think I read. It seemed like longer with all that progress.

Impressive.
Thanks!

Enthesitis is inflammation of the entheses - connective tissues between muscle & bone (tendons & ligaments). This is a main source of AS pain but kind of hard to pinpoint.

Your labwork certainly sounds like lupus ... do you have other symptoms? http://www.lupus.org/webmodules/webartic...&zoneid=524

High platelets and anemia could have different causes. Depending on the type of anemia it could be from various deficiencies like B12 or iron - or it could be "anemia of chronic disease" which essentially resolves when your chronic disease is brought under control.

Hi, Fatcat,

We've talked before. Have you had arthroscopic surgery for the labral tear? It will help tremendously.

Before I was finally diagnosed, I was right where you are. Sick of doctors who say nothing is wrong, etc. I went to a foot doctor and he insisted I try another rhuematologist. I did and that doctor took me seriously and I finally started treatment.

So I am begging you to try another rhuemy. Tried to get one recommended. The proper medications will eliminated much of that pain if you get it before permanent damage.

It is so sad to read how you are suffering and I wish I could give you a hug and help.

Sorry, Anna

Maybe? You can go to the mayo, do what you need to do for the docs to get your condition and treatment plan going in the right direction then follow up with your family doc? Now that I have mine back (family doc) I realize how much he did do for me even though he wasn't "the specialist". If you have or can see one that wouldn't mind working with docs from the mayo? Or even a bad rhuemy who wouldn't be so isulted as to? My fam dr. has helped me through another serious illness and was more than willing to work with my endo and play middle man when I was in between appts. Actually we are supposed to have a "team dr. approach". Like right now, I am restarting on my MTX and he suggested I start at the lower dose I was on before my increase then all the med reactions along with the flu experience, then increase by 1 tablet til I hit the recommended dose of MTX giving my body a chance to adapt. There's a t word for that. I am super paranoid due to my reactions to drugs and terrified to restart my MTX. After talking to him I thought wow, why didn't my rhuemy do this? He also sends stuff on me back and forth when it has significance to my AS and the rhuemy is always sending a report after every visit.

I was relentlessly given anti d's for pain for quite awhile. I wasn't depressed. PIssed at the world cuz I had this but not depressesed to the point I felt I needed the anti d's. Never helped me with pain either.

Bursitis hurts like ****! Shin splints on a non runner? That is interesting. That hurts as well, although I really am lucky in the sense as a runner I rarely experienced them. Ever try freezing a small paper cup of water and icing the area peeling the cup as the ice melts? The thought of cold on my painful joints are sending shivers down my spine but it might help. Injections for the bursitis? My hubby just got over a bout, one injection and he hasn't complained. I had it and refused injection, took forever to heal and sleep? Haha.

I wish I could fix you fatcat. It's not fair! I get the suicidal thought, which is only a thought on a bad day. When your thinking of how much more of life you have to live and wondering where you will be like 10 years from now with the AS/pain.....Just keep coming here to vent in the least. My advice can very well be crap,lol, but my compassion for what you are going through is real. I feel your pain. Narcotics btw aren't something to fear. I am finally switched and am taking LESS tylenol, (can't use NSAIDS, tummy) and tramadol, nil. 4 vicodin a day if that. So worth it when I think of how much I was downing prior. 8 tramadols (i confess to a little more cuz it wasn't working on the pain!) 8 extra strength tylenol a day. Now? the equivalent to 4 extra strength tylenol and hydrocodone, that's it. I don't feel like using more and I don't walk around drugged all day long.
Of course, you may not be the one who has trouble with the pain med idea. Getting a compassionate doc who will prescribe it is another story. They are out there! 30 years with AS? You deserve a purple heart. Gentle hug to you.