Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Latest Doctor Appt.

Has anyone ever heard of borderline pain med tolerance. My PM doctor said he's seen it in a few cases and I have it. He said it means that my body will adjust to whatever medication level he prescribes and I've basically failed on opiates. I'm wondering if my pain is just too large, but he said I'm on a relatively strong dose and if he thought more would do work he'd prescribe it, but he said I'll be right where I am again in a month.

He had another doctor consulting with him yesterday and they actually called the whole diagnosis into question. They said that the disease isn't following the right course and the blood tests results are bizarre and don't match with AS or any disease they know. The only thing he could say for certain is that its autoimmune and the bone scan shows every joint is affected. He said I need to find a doctor at Hopkins or another teaching hospital to take over for rheumatology.

I'm really on my last straw here. I'm in constant pain in my upper back and I can barely walk at the moment. I'm supposed to start a new job soon, but I don't know how I can do it. I'm thinking of hiring a lawyer and seeing what he can do for SS. Since I'm only 29, I don't think I've paid enough into the system, but maybe my physical condition will count for something. I'm just afraid if I start a new job feeling this way, thing won't work out.

If anyone has any advice, I'd appreciate it.

Jeff

Jeff,

I can't help you on the pain medication tolerance thing. However, I'd imagine that a tolerance can be mounted by the body to any substance.

The suggestion to see a rheumy at Hopkins might be a very good idea if you can swing it. I know it is not a real popular concept around here, but have you considered being tested for lyme disease (even if you don't suspect it) by a knowledgeable physician? I say that given the doctor's assertion that "the disease isn't following the right course". However, I didn't know there was a "right course" for this disease. I'd work to rule everything out if you are able to consult with a MD at Hopkins.

Regarding SSDI, it is my understanding that if you have enough work credits, you are eligible. However, it might be a good idea to speak to a disability lawyer to help you straighten out the facts.

Best of luck.

Wow, what happens to sick children? I sure hope you can work out the disability thing, that sounds like a worthwhile road to explore.

As for tolerance levels, I completely understand where you are coming from and both me and my doctors are questioning everything. More information is always a good thing. My disease is also atypical and I do not respond to the meds in the way "I should" either.

Pain sucks. There are so many people suffering and hoping for answers - well at least there is the company to be had here that misery seems to love so much.

Chris

I don't think they've done a Lyme disease test, come to think of it. I guess its something to look at, or at least rule out.

I think what bothers my pain doctor about the Dx is that the blood tests don't match up with the disease (except the HLA-B27, which could be associated with other diseases), and I still have mobility, despite first getting symptoms as a child. Also, most of my pain is in my upper back and he said it always attacks the lower back and SI joint. I am having my records faxed over to a doctor who specializes in Spondylitis diseases at Johns Hopkins, so hopefully they can get to the bottom of this. I just want to get this under control so I can do well on this job (if it ever comes through).

i think seeing the doctors at hopkins is a good next step, and if that doesn't work, Mayo, Cleveland Clinic, NIH are other options. NIH even has a program for undiagnosed diseases, specifically for the especially hard cases to crack.

sorry the pain meds are not working. what you describe is something i'm not familiar with. not to place any thoughts on it, just something i am unfamiliar with.

i was unable to work for several months recently and it was a scary feeling, but i've gotten better again, for the time being. i hope that they get this under control for you so you can work (and live your life) as you want to. but having SS as a backup plan is probably a smart proactive move.

thinking of you, and wishing the best for you.........

I had my records from the pain clinic sent up to Hopkins. I need to get my rheumy's records, but I'm afraid its going to be months before I get in. The answering machine said they would call me back about an appointment.

I think I'm going to go back to my current rheumy and tell him my condition is deteriorating and I need to try something like MTX. In the past he said it wouldn't work for AS, but my PM doc said maybe its not AS.

I still haven't heard anything about my job. I got a call from a head hunter and I felt bad turning him down since I don't feel like I have a job even though I accepted an offer. I assume their doing background checks, but its taking a long time. I guess I just have to keep waiting for both things.

Odd that a rheumy would say MTX doesn't work for AS. You'd never know it considering the number of people here who are on it.

I hope they get your med records to you quickly so you can send them up to Hopkins. And I'm pulling for you on the job front!

Hugs,

I had read a while back that Humira works better with MTX, so I asked my doctor about it. He said it won't work on my condition and wouldn't even try it. I'm going to ask again on Tuesday. I tried to get a second opinion a couple months ago and the doctor's office turned out to be a disaster. And so far I haven't heard from Hopkins.

I'm going to see if there are any other places I can go. Anyone have any advice on what the best course of action would be. I'd even be willing to travel if there was a doctor/team of doctors that was best at this. The pain in my upper back is constant and I can't bear weight on one of my legs.

I feel like I'm missing out on life, and this new job won't work if I'm in too much pain to work, so I'm feeling desperate for an answer. My parents say I need to just ignore the pain and keep going...but how do you do that when the pain is constant?!? I just really need to be going in a direction of improvement. Right now everything is falling apart and my condition is deteriorating.

Just thought I'd mention that I'd give an update after my appointment Tuesday. Hopefully I can get a shot in my hip and it'll start feeling a little better.

JeffreyS, best of luck Tuesday. You are right, it is awful to feel you are missing out on life. fwiw my rheumatologist also said Mtx would not work on AS and jumped from NSAID's straight to TNF meds as my next and only option. My thought after noticing many people here on MTX was that he makes a lot more $ getting people hooked up with TNF meds in his clinic. Not putting TNF meds down, I may be there before you know it, just an observation. Best of luck with the job, too. If you can manage your health enough to be able to work it sounds like a sure fire way to feel like you are part of life again.

Lisa