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Posted 11/5/2007 11:14 PM (GMT 0)
OK so I went to see the pain doc today, well, rather the Nurse Practitioner. I have been having a rough go of it lately and have no clue as to what is causing all this.

Unfortunately, the visit today wasn't all that helpful as I had suspected. She told me that while I do have degenerative disc disease (tell me something I don't know ) she doesn't think there is anything that can be done other than the wait and see approach as well as PT. She feels that is could be myofacial in nature and my recent bout of heavy lifting has aggravated my C-Spine. Apparently my shoulder and arm reflexes are good but this may not mean anything. My problems are very intermittent and most of the time seem to radiate upwards and a damaged disc or other spinal abnormality can cause this but how do my lower limbs fit into all of this is the million dollar question unless I have an unknown lumbar pathology. When I move my head or push on my neck with my fingers it sends and electrical shock down into my right leg but my arms are fine so at this point I don't know if the C-spine is causing this.

I did ask her if she would order another round of imaging studies IE; MRI, CT, Etc. but she wants to see how I do with PT before going that route but she did order some Flexion, Extension X-rays of my C-spine just to see what's up.

She also ordered some blood tests to send out to the Igenex laboratory in California to test for Lyme disease again. Perhaps I do have it after all. Last year it was thought I might have it so I was put on oral antibiotics for about 5-6 months, they didn't seem to be much help. I was told I needed IV Antibiotics but the lyme doc did not write the order and my PCP wanted nothing to do with it
I am still not completely convinced I don't have it and neither is the Nurse Practitioner.

So once again I am still no closer to figuring any of this out. My PCP is trying to get me in to a Large Clinic in either Boston, MA, Burlington, MA or even NYC but so far I've heard nothing else about this.

I see my PCP next week so I hope to find out what's up then. However, I really don't want to see this doctor anymore because she is always giving me a hard time about the Opioids. Telling me such things as they cause more problems then they solve especially for those who've been on them longer than four months. UNBELIEVABLE !!! Is all I can say. It isn't even her place to comment on this. I so want to tell her to shove it up her you know what but if she can get me into Mass General, Lahey Clinic or Mount Sinai I don't want to jeopardize this. Sigh what to do and what to say to her. Anyone have some ideas?

Well that's it, sorry I wrote a book

take care everyone

Glenn

Post Edited (quahog) : 11/5/2007 4:37:30 PM (GMT-7)

Posted 11/6/2007 1:30 AM (GMT 0)
Hi there.

I live in Maine as well.

My pain doc is great as well but he hasn't been able to tell me what is causing this.

There is lots of speculation but unfortunately that's it.

They do treat my pain thankfully. If it wasn't for them I would be in serious trouble.
Posted 11/6/2007 9:21 PM (GMT 0)
tspauld, i am very interested in what you said about finding a good pain doc here in Maine!

My PCP has been taking care of me exclusively for the past two years (total length of 24/7 chronic pain has been five years; seven since the initial infections started), and is now starting the application paperwork to the Mercy Pain Clinic.

Based on their web site, their reputation, and my own mother's experience there, I am not too sure that they will be able to do much for me except waste my time and make things harder for me.

The main reason we are applying is because I am now on a total of 440mg of Oxycontin and 32mg of Dilaudid (hydromorphone) per day, which is as much as my primary is willing to prescribe -- and about as much as MaineCare will pay for, at least in terms of Oxycontin. Since MaineCare won't cover Opana, the medication I have previously tried and had better results with, we are stuck.

We are applying to the Clinic to get me better pain management; we already pretty much understand what is happening with me, and there aren't very many treatments available which we haven't already tried (except TNF Inhibitors and they are a poor option for Reactive Arthralgia/Reiter's, plus they are SUPER DANGEROUS).....so for now, unless I achieve a remission someday, is to increase/change my pain meds.

I know that's a very high dose to be asking someone to continue increasing; but frankly, I have a pregnant wife, a young child, and now is not the time to be "trying" things or taking risks. I need to improve my pain control and mobility/function through the birth, and then after a few months we could talk about more disruptive/riskier options.

Obviously, in this difficult and challenging situation, I need the absolute best pain specialist I can get. If there is someone out there better than Mercy, I desperately need to find them and tell my Primary right away! The due date is only about five months away now, so we don't have a lot of time to get things sorted out.

I know that many CPers who have a great doc are hesitant to add to that doc's workload/number of our kind of patients....but my family would be far better off if I was able to find a good pain specialist. I am willing to do whatever it takes; I am hardly expecting to get opiates and nothing else. But I can't afford to be drowned with a heavy(ier) PT/"alternative therapy" workload in my current situation, or for most of the next year. After that, if things haven't improved, I would be willing to start trying riskier options.

Thank you so much, and if you don't want to talk about this on the public forum, I can be emailed at [email protected] !
Posted 11/6/2007 9:23 PM (GMT 0)
Quahog, I've been thinking a lot about forming that new local/online hybrid support group that I have been talking about for a while now.

Things like finding/reviewing pain docs and other local resources would be a big help for many people I am sure, and who can understand these things better than other sufferers?!

At the very least, I would like to form an online chat room, IM/email list, or other means for us to stay in touch! I think we could help each other quite a lot, and I bet there are a lot more local CP sufferers than we realize!
Posted 11/9/2007 6:28 PM (GMT 0)
tspauld.....

My doc told me today that the Mercy "clinic" rejected my application because they are only an "interventional clinic" offering injections, surgery, implants etc but isn't interested in chronic medication cases like mine.

I think that the Maine Med pain clinic on Brighton Ave that my mother goes to is a separate entity (I previously thought they were one and the same). I will be contacting them.....

In the mean time, I am extremely interested in the specialist you have spoken so highly of. My doc and I want to get me in to see a pain doc/clinic and I have been on the max Oxycontin/Dilaudid that my primary doc will prescribe (and MaineCare will pay for, at least in the case of the Oxycontin) for a year now.....obviously, it's long past time for us to try other medications and/or increase dosages.

I am very interested to switch to Opana ER/IR/suppositories which I tried in the past with excellent results, or possibly another combination that might work well for someone that isn't getting sufficient relief even with very high doses of Oxycontin.....such as Methadone and Fentora (dissolving fentanyl tablets).

Either way, I have to find a specialist who can convince MaineCare to pay for these medications, in the doses I need. Since I am in a very challenging period of my life right now, with a second child due in late Winter and my condition being extremely horrible.....I can't be jumping through lots of extra hoops at this point. I need the fundamentals of the most effective possible pain management regimen, and time to take care of my family with maximum function until the wife is recovered from the birth and the new baby is walking.

Thanks again, guys. This local Maine info is absolutely invaluable! I am hard at work on that local/regional health site I've been talking about, and will let you guys both know when it's close to being ready for prime time :-)

If you don't want to talk about your specialist on the open Web forums, tspauld, I would happily use email, Instant Messenger(s), phone, whatever works for you so that we can share as much locally relevant information as possible and hopefully to our mutual benefit! :)
Posted 11/9/2007 10:08 PM (GMT 0)
I truly wish that I was kidding! :-(

I have a truly awful collection of conditions (all related to one another) -- started with Chronic Pelvic Pain Syndrome (feels like being kicked in the balls, hit in the rear with a baseball bat, and then shot in the leg while someone takes a blowtorch to your hip sockets) and that in turn spawned Reactive Arthralgia AKA Reiter Syndrome, which has left my entire body head to toe in constant searing pain. Add in frequent nausea, periodic vomiting (despite the use of multiple strong anti-emetic medications and unaffected by changes in my pain med levels, so it's not directly related to opiate usage) and some other fun stuff I won't bother to list here.....and you've got roughly where I'm at now.

I could literally write a book to list all of the symptoms I have, they are so insanely numerous.

Even though the Mercy clinic rejected me -- saying they are only "interventionary" (shots, surgery, implants, etc) and I should have a Rheumatology consult (I still haven't been able to find a local one in Maine, everyone including my doc knows that there's basically no good rheumatologists in Maine, at least none that will get someone with MaineCare through their waiting list in under a year!!!!) -- I still have my wonderful primary doc, who will keep me at least not too much worse off than I am now until we can find better options.

I may have to go to Boston/MA/NH to find a rheumatologist worth seeing. Which is obviously not an ideal situation with my wife so pregnant, us already having one very young child, and me pretty much totally unable to work.....

And finding a good pain specialist is also going to be vital. I just don't know who out there would take me in my situation! Most application forms don't take into account things like the fact that I have a pregnant wife to take care of, with what little function/mobility I have left. I think if I could find the right doc, and get him/her to understand the full reality of my situation and my condition, they would hopefully be able to make just enough changes to make a real difference in my ability to be there for my family over the next year or so.

Beyond that, I am willing to have an open mind to what that doctor, if he/she is really the right person and has demonstrated that I can trust them to do right by me & my family, wants me to do from there. Frankly, despite the Everest-like challenges of my case, I am pretty much ideal for a pain management patient; I do everything that is asked of me, I don't do anything wrong, all I want is to be there for my family. I have toughed out numerous reductions/changes in my meds over the past seven years and even went completely off of them twice before this last run of almost three years.

I'm sorry to post up a storm in this thread which isn't even really supposed to be about me.....but as soon as I saw the discussion of pain clinics/specialists in Maine, well, I had to jump in with what relatively little (if you can believe it! I used to write for a living, dozens of pages a day easy!) typing stamina I have left and try to find out if there are any other options/names I can look into here.

I need someone/something which accepts MaineCare, which makes doing out of state care difficult if not impossible. But as I am learning, it is very hard to get basic, vitally important specialist consults of any real quality or usefulness (if at all!) here. As if MaineCare's outrageous rules and PDL choices/omissions weren't problem enough! eyes eyes

Thanks guys for being so understanding about my sudden and probably somewhat overbearing presence in your thread :-)

If there is ever any way in which I can be of help to you, please, let me know.....I would be honored for the chance to put all that I've learned through this monumental suffering of the past seven years to good use helping alleviate at least some of the suffering of others. It gives my struggle added purpose, which I think we can all use as we battle to resist depression, despair, frustration over the endless insanity that is "medical care".....
Posted 11/10/2007 12:31 AM (GMT 0)
Hi Exit,

I am so sorry that you are going through all this. In a strange sort of way I can relate.

I can vouch for Tspauld when he/she says that MRA is a good clinic. I have been going there for years now and they have been a very big help. When no one else would touch me they did. Unfortunately, no one really knows why I am in the pain that I am in as I have said there's only speculation. One of the NP there thinks I may still have Lyme. I was treated for it for about 6 months last year however there has been no improvement. If this truly is Lyme I have had it for so long I might never be rid of it. I was bitten by a deer tick on my abdomen in 1991 when I was in the Army and stationed at Ft. Belvoir Virginia. When my symptoms came on about 5 years ago now I was tested for Lyme but none of the tests showed anything. Now I find out that the tests are highly inaccurate and I could have it and have no real way of knowing.

I could've taken the tick and gone to the medical clinic on base after I was bitten but I never did. I was so sick, I had the worst cold/flu I have ever had and even lost my voice, I could not even whisper.
Since then I have had weird things happen to me but I never thought it was Lyme until recently. If I was infected with Lyme I should have notified the Army of this fact so I would've had a record of this. Then later on I would be able to receive treatment from the VA and possibly other benefits but I never did this and now I am kicking myself in the rear.

Even still I was in a head on traffic collision ten years ago where I injured my neck and since then it hasn't been right either. I was found to have a C3-C4 disc herniation but the thing is not one of my doctors thinks that is is causing my problems even though herniated discs are synonymous for cause pain and discomfort. Personally, I think my neck is causing most of my problems but because my symptoms are atypical no one thinks it is. I know things of this nature will usually follow a certain course but not always. We are all different and my body doesn't care if the AMA says a disc ailment will only do one thing and not another. So this is the situation I am in and unless something changes, shows up on an MRI scan or another test (which have not be performed yet) I am between a rock and a hard place.

As you very well know it is hard to do anything when you feel lousy but fortunately the doctors over at MRA have been kind enough to treat my pain, and help me to obtain Social Security Disability. If it wasn't for them I don't know what would have happened. It hasn't been easy but because I have met some caring folks at the clinic I have been able to return to a more normal life. I've returned to school in the hopes of starting a new career in medicine. Of course this all depends on if my body will let me or not but at least I am able to try.


I would like to think that if they might be able to offer you some help as well.

Post Edited (quahog) : 11/9/2007 5:38:42 PM (GMT-7)

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