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Posted 4/28/2008 9:32 PM (GMT 0)
I've been having a heck of a time with my back these last 6 months or so but I have a history of back pain going all the way to my late teens.  I got a diagnosis of sacroiliitis last November.  I've had numerous tests including a ton of bloodwork, MRI, xrays, EMG - you name I have had it. NO ONE can tell me where my pain is coming from. NO ONE can tell me why I can't stand, walk or sit without being in pain.  It's not just my SI joint but my lower back and upper back as well that hurts.  I'm 38 years old and I feel as if I am 80! I can barely get out of bed in the mornings let alone do active things with my family.

After my appointment from hades 3 weeks ago (which I posted my vent about on here), I called my primary to see if she can refer me out to another rheumy.  Unfortunately, there are only TWO rheumy's within my network (I have an HMO) and they are in the same office.  I am thinking that I have the beginnings of some sort of arthritis in my spine.  And I am going in tomorrow to have my blood drawn to check for a certain marker (HLA-B27). Well anyway, my primary said that even if I do have arthritis that there isn't anything they can do about it.  But I told the lady (the receptionist was the go between me and the doc), that if I have a certain type of arthritis and I start on a medication that maybe it can slow down the progression.  But the whole phone call left me in tears because I feel as if no one can tell me anything.  I can't but help feel as if I am going to be in a wheel chair soon and not even KNOW why!

So here is my dilema.  I am thinking about going outside my familiar network to a larger and better hospital.  One that has a great reputation here in Michigan (Beaumont of Royal Oak).  But if I was do that, I would have to give up my GI.  The same GI that I have been with for the past 12 or 13 years. My GI doesn't go to this hospital.  So what would you do? Would you give up your GI whom you love in order to find another doctor who may or may not be able to help you with your back problems?  Has anyone had something similiar happen to them?

Any advice you can give me would be greatly appreciated.  I'm becoming quite depressed and I am so confused.

Posted 4/28/2008 9:54 PM (GMT 0)

Sherry,

I think my answer would be yes, I would leave my GI because I want to live pain-free.  You never know, you might not have to leave the GI for good, just long enough to get answers on why you are in so much pain.  I would also recommend, if you still cannot get answers, to seek a pain specialist at some point.  I know you want to know the origin of the pain but sometimes they cannot be found.  If this should happen (and I hope it doesn't) do seek a pain management specialist.  At least you could get some relief.

Sue

Posted 4/28/2008 10:30 PM (GMT 0)
Thanks Sue. I have been seeing a pain management doctor already since last December. I have already received two steroid injections in my SI joints (1st one did wonders, 2nd one not so much). I am seeing his associate on Friday to start accupuncture or have some sort of glucose(sugar) shot. I also have been prescribed Ultram so I take that when the pain gets bad. The EMG I had showed some aggravation in my lower back, but it can't be pinpointed where it is coming from.
Posted 4/28/2008 10:49 PM (GMT 0)
Hi Sherry. I had back pain a year ago and the doc's thought I had a slipped disc..after clear MRI they had an AhA! moment when my ankles started to swell. I was sent to a rheumy immediately and was given a pain med and pred....I had inflammatory arthritis..as a comlication of Crohns/colitis. After several months of pred taper from 60 mg to 0..and switching from Asacol to Azulfidine...I was good to go. Good luck to you..if it is IA..it hurts terribly..but it can be treated and you can be pain free
Posted 4/28/2008 11:16 PM (GMT 0)
Sherry,
I see that you have Spinal Stenosis-my mom and good friend have that and at times they have the same troubles you are having-with walking sitting,ect. I know they both had to go for physical therpy which helped some.

Sorry you are having such troubles, your too young to have all those problems!!!
Posted 4/28/2008 11:33 PM (GMT 0)
Sorry to read that your back continues to be a problem. I don't think it's that unusual for an IBDer to have these recurrent stiffness/pains, though. For some reason my gastro, who subspecializes in IBD treatment, never wanted me to get any steroid injection when I had bothersome left hip stiffness/pain ca. 3-4 yrs ago. It did improve with increased vit D supplement, glucosamine, & less walking for a while, more rest. Spinal discomfort I had in my early yrs with UC thankfully went away when my severe flares got tamed. Should you give up a gastro you love? I'd say NO! Rather go for the rheumy consultation at Royal Oak on your own personal check. That's actually what I do with my gastro, who doesn't participate in any insurance plans. about your past diagnosis "spinal stenosis" listed in your signature: did the doctor who said you had it give any recommendations for follow-up? It sounds to me like the kind of condition that could lead to chronic pain by causing pressure on discs or nerves. Maybe try researching it on the Web if you haven't already looked. Arthritic conditions sometimes improve with changes in diet; maybe there are some dyes or artificial ingredients you could watch out for & avoid that would help in the long run. Just think of yourself as chemically extra-sensitive, but try not to get depressed about it. I'm sure a lot of us IBDers react badly to even common things like cleaning powders & solutions. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 4/29/2008 12:10 AM (GMT 0)
Why haven't you seen a chiropractor? Typically that's an easy fix most of the time. Just depends on what you do, how long it's been there, arthritis or not..... a bunch of stuff. Just find a good one. There is no GI that will help a spine problem, and no pain specialist medication that will get to the cause either. We get the pain clinic people in when they are zombies, then they get irritated with their docs because no one would tell them to come to us. I would start there anyway and not waste alot of time doing everything else first.
Posted 4/29/2008 12:40 AM (GMT 0)
I'm confused! I'm new to the HMO thing, as well. Why would you have to leave your GI to see a Rheumy outside of the network? Would you have to join a whole new network?
Posted 4/29/2008 12:54 AM (GMT 0)
Red, you seem to have some of my symptoms and my rheumy diagnosed Fibromyalgia last week. Have they checked you for this? I nearly kicked him when he dug into some areas of my arms shoulder and neck. By this and my symptoms (fatigue, muscle pain, difficulty sleeping etc) he made the diagnosis and wants to see me again in 6 weeks. I got this awful cortisone shot in my shoulder, more for the torn rotator cuff, I think. He want to settle down the trigger, he said.
Posted 4/29/2008 2:49 AM (GMT 0)
Hey Sherry, sorry you're having such a rough time!
Although I'm not having nearly as much trouble as you, I've had back pain going on a 6 or 7 months now and I got my GP to prescribe me some massage and after the first session my back was so much better!
I'm going every week for a while, and I have to say, even if I had to pay for it, it would be totally worth it.
Might be helpful even if it doesn't address the whole problem :)
James
Posted 4/29/2008 3:31 AM (GMT 0)
Sherry, do you have to have all of your doctors at the same hospital? Most plans I've been on have let you pick an in-plan provider from anyone on the list. But right now your back is your primary complaint, I'd say do what you have to do to get it taken care of. You know all about taking care of your UC, so a new doctor probably can't screw things up too much.
Posted 4/29/2008 3:48 AM (GMT 0)
You know your HMO better than we do but I like to think when there is a will there is a way. First, you insurance should pay some of an out of network provider. You would just have to pay more. Second, if there are only 2 docs in network maybe your doc could petition on your behalf for you to go out of network by saying they are booked and this is urgent or something like that. Third, if they are in a different network that it is out of your area you might get permission to do both. When I was on my parents HMO I could see my GI in Mass and another doctor in NH because that is where I went to school. I was allowed to be in two networks at once but that is because I lived in two geographic regions. Finally, if it is far enough away from your home you could qualify to go there under "out of area care." Basically, if you get hurt or sick on vacation you can see any doctor and it will be covered. It has to usually be at least 45 miles from home or something like that. You probably couldn't make a regular habit of seeing this doctor but it would get you a couple visits to see if he or she would be of any help and worth switching for.
Posted 4/29/2008 11:08 AM (GMT 0)
Dawn, my HMO works like this. I go see my PCP. She only goes to two hospitals. I then have my choice of doctors within those two hospitals. Unfortunately, the other one in which she goes to I wouldn't even go to if I was dying! Now if I wanted to see another doctor out of my network, I would have to pay out of pocket because my insurance will not cover any other doctors that are in different hospitals then where my PCP participates in. If I wanted to start seeing doctors at Beaumont, I would have to switch my PCP because I would have to find one that participates in Beaumont. I then can get referred out to any doctor within the Beaumont system. I would have to leave my GI because he does not participate in Beaumont so therefore I would not be able to be referred to him because if I switch, then my new PCP would have to refer me to a GI that does participate in Beaumont. So basically any and all of my doctors have to participate in the same hospital in order for me to be referred out to them. I got a really strange HMO - but that is Ford Motor Company for you. Of course they would have to pick a plan that is the most inconvenient! :)

D_A - I've thought about a chiro. And I may still end up seeing one. It scares me to tell the truth. I heard good stories and bad stories about chiros. So I'm afraid that if I go see one that I will be worse off then before I started!

Linda - I was given the half handed diagnoses of fibro a few years ago. I took it off my signature because I truly don't feel as if this is what I have. I just don't fit much of the criteria.

James - if I went to massage and if it doesn't help my back - at least it can help ease any stress huh?? :)

Thank you everyone else for you replies. In the light of morning and after thinking about it for a while. I came to the conclusion that I may just see a rheumy outside my network and pay out of pocket. Just ask for a second opinion kind of thing. Of course I won't be able to be subjected to anymore testing since this doc is out of network and it would cost me an arm and a leg! I think most specialists in my area charge at least $180 for an office visit alone. But in the meantime, I am going to try the accupuncture. Since I have tried resting, I have tried P/t, I have tried excersize, I have tried almost everything in between to help ease this (except see a chiro! lol) - so either I'm not doing it long enough or it's just not working.
Posted 4/29/2008 12:42 PM (GMT 0)
Sherry, I started acupunture a couple of months ago and I think it really helps. Can you go to the hospital you want and then pay to see your GI. My GI visits are like 160 bucks. But I would pay it to keep him. I know you would have to see someone else for scopes and things, but an office visit a couple times a year may be worth the out of pocket expense if you feel he is the right GI for you. I sure hope you feel better soon.
Posted 4/29/2008 1:01 PM (GMT 0)
Sherry, this may very well be the sort of thing accupuncture can help with. IMO, if PT didn't help, chiro may not either. But at this point, I'd say try whatever to get some relief.
Posted 4/29/2008 1:14 PM (GMT 0)
Thanks for the tutorial on HMOs! It's tough to find a GI that works well with you - and you've been with yours so long and have such a good relationship, I'd just really hate to change it up.

I've had great luck with chiropractic and my back. I did far too many stupid things as a kid and need regular treatments - but I can tell a huge difference in mobility, pain, etc when I go. I guy I saw in MI - in Lathrup Village off of Southfield Fwy - was good. A bit eccentric, but nice. He used a process called kinesiology to check all that was going on. I'm guessing with your HMO you'd have to find one in network, etc. With my HMO I actually had to ask my PCP for a referral to a chiro! Talk about awkward! Most MDs and DCs poo-poo what the other says... But it didn't even phase this PCP, for which I was glad.

Let us know how the accupuncture goes! (My mom's chiro does accupuncture as part of her chiro routine.)
Posted 4/29/2008 2:09 PM (GMT 0)
I think you have come up with a good plan, Sherry. I would do the same. While I was at the "good" rheumy, I would take notes/get orders for the tests and pretend I am going to make an appt. for the tests, then go back to the "hades" doctor and be like, ok, I want this test done, etc and give it a try, at least. Sometimes you gotta do what you gotta do when it comes to insurance and their nonsense. If the pain is caused by Arthritis, I wonder if Remicade/Humira would help. I have been wanting to try accupuncture for a long time. I have heard good things about it. My rheumy recommends 3 Glucosamine (500 mgs pills) a day and 5 cups of green tea for Arthritis along with meds like Humira or Methotrexate and changes in diet. I hope the new doctor can pin point exactly what's going on in your spine, you shouldn't have to suffer like that and it is so frustrating to be in pain and not know why.
Posted 4/29/2008 3:06 PM (GMT 0)
PC - that is what I was thinking too! Maybe get a second opinion from another Rheumy and then go back to the hades doc and say that I got a second opinion and this is what I would like to see done. I just started a Glucosamine complex a few days ago and I can tell it's starting to help my knees. They no longer are throbbing on me :)

But, I just got my blood drawn for the HLA-B27. So we shall see what that comes up as. I'm not holding my breath though.
Posted 4/29/2008 3:31 PM (GMT 0)
Hey Red - I also wanted to add that I have seen a chiro for two neck injuries and they helped tremendously. Mine was also covered under my HMO for 12 visits.
Posted 4/29/2008 5:16 PM (GMT 0)
Sherry,

I almost had to do the same thing. I would have had to switch all my Docs, but then hey I could switch back........right??? Well I was hoping that would be the case. With my HMO you can change your primary up to 5 times in one year. It would be a monumental pain but you have to do what is best for you!

hope it all works out!
Posted 4/29/2008 9:16 PM (GMT 0)

((((((((((((((((((((((((((((((((((hugs for red))))))))))))))))))))))))))))))))))))))))))))))).Do whatever you have to do to get yourself better.I know you have a lot going on and maybe the seasonal change could be affecting you too. Fibro seems to get worse during these times.I know that this has been going on a while, but maybe the Fibro is making things worse.I know i have noticed a lot more symptoms this past few weeks.

   Do whatever you can to feel better.Lots of hugs and healing vibes heading your way Red.

                                        Marty

Posted 4/30/2008 3:15 AM (GMT 0)
I had horrible back pain last year. I was diagnosed with spinal stenosis. I went to a physical therapist which helped. I did the exercises at home for a while. After a while, the pain just started to subside. It's so much better now. I've also been to a chiropractor several times which almost always helped.

My mother had excrutiating back pain and got a pain block from a pain specialist. It's like an epidural. It helped almost immediately. She had to have it done about every 3-4 months.

Don't lose hope. Back pain seems to ebb and flow. It will probably get better over time.
Posted 4/30/2008 12:08 PM (GMT 0)
Thanks everyone :)

I'm feeling a bit more optimistic today - so I guess I'm back to my old self! My back doesn't bother me much as long as I don't DO anything but I can't live my life like that. I mean, I have to get up and clean house at least - but then the pain cycle repeats. I do have my kids helping out around the house so that's a bonus anyway. I have an appt tomorrow with the pain doc (not Friday - I had my days wrong) so I will see what he has to say about pain management and the options I have.
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