Need Feedback from all Chronic Pain Sufferers'

 

Hi All,

I am pretty new to this forum, I have had lyme disease for 7 years, with lots of painful complications. I am on SSDI and have Medicaid. In the last 2 years I have become more and more aware of the difficulty of getting proper care and treatment for all types of medical issues.

In the lyme disease arena, doctors still refuse to give antibiotics for longer than 3 weeks if you are lucky enough to find a doctor to do so in the first place.

The denial of lyme disease and the belief that you are cured after 3 weeks of antibiotics has created a large group of children and adults that have chronic pain and other degenerative disorders for many years.

I can relate to all of your posts about no one believing you, worst of all can be the doctors I have suffered from all types of indignities you can't imagine. And if the doctors deny your pain, most likely you will lose friend and family support eventually.

Now to the point, I am setting up a meeting with my state congressmen (Ct) to discuss the issue of chronic pain (interestingly he did not want to discuss lyme disease, still a big time political, pharma etc. mess). He has responded to me very positively to this problem.

I want to gather all of your thoughts, feelings and ideas about this before I schedule the meeting . You all have the most experience and insight that I have found. I want to be sure that I do my best in representing this issue.

Thank you all in advance!

Anna

Ditto on the ABX. I was on po and then IV and then back on po and while I understand they were desperately wanting to head off what could have become a very dangerous situation with a new total hip replacement, I think (my "patient only" opinion),...it was overkill, and that's one reason I landed back in the ED and admitted for observation and my bloodwork has been all wonky ever since. I am still dealing with the collateral damage of that, and I've only been discharged about 10 days ago, so, yeah, ....

But I will comment, that I am very unfamiliar with Lyme disease and how it's treated.

I'm more familiar with ortho/neuro issues.

Sookie

Anna, Lyme disease is known to have long lasting affects, and often requires lenghtly antibiotic treatment to ""cure"" it! If that is what you want to call it. I am not familiar with CT. policies or problems with treating Lyme disease, but I do know people that have had it, and it can be devastating, and have long lasting affects on ones health!

You know I seen my VA doctor today ( my annual visit to get some of my prescription medications renewed.) I talked to him at length about my pain medications (which the VA does not prescribe or provide) That is done through my civilian doctors and spinal pain management clinic. Anyway he was not in favor of me being on the pain meds until I explained why and what the problems were that causes my pain, and how so far surgery was not an option to fix it. Then he came around and said as long as you have a documented physical cause for your pain then he felt treatment with pain medication was acceptable. I have some nerve impingement by herniated and torn thoracic disks and also some thoracic bone spurs. None of which I have found a surgeon that is willing to touch them! All have told me as long as I can move an no paralysis then disability and pain management is the preferred way to treat it. The thing I am getting at is what about the many many people that suffer from pain and don't have such a cut and dried diagnosis? According to the Doctor I seen today they might not qualify for pain medication?

It is such a subjective thing, there is no device that I know of that can definitively tell if a person is in real pain. Do you have to prove that you have a actual physical problem that is not surgerically correctable that is causing your pain before you can be treated???

Anna I hope your meeting goes well, there are so many variables involving chronic pain and no one set standard or set of rules can be applied to every one. Treatment varies from Doctor to Doctor, state to state pain clinic to pain clinic. It is a tragedy that some people abuse prescription pain meds but it is also a tragedy that some people abuse alcoholic beverages, or even driving motor vehicles, and the use of all sorts and varieties of weapons. Are we to ban everything that some individuals abuse, and possibly die from??? Are the larger numbers (masses of people) suppose to go without and suffer because of the thoughtless stupidity of a few?

Just my ramblings......White Beard

This may or may not be relevant. But one thing I have wondered about is if there has been a increase in people having to go into nursing homes because they can't do the most basic things due to the concern over pain meds. This is a population who is only in the nursing homes because the medical community fears giving the meds that would enable them to live independently.

Mercy, great point!

The Rehab facility I was at was also a LTCF, and I couldn't help but wonder this same thing as I looked at some of the patients....


Sookie

Seems to me congress makes laws that make docs afraid to treat with what you need and what works for you. Docs don't want the gov to take away licenses ect so they are trying to balance what you need with what covers their a**.
Just a thought

Anna,

I really respect what you are trying to do. Hope it helps. At the political level, its a huge fence you are trying to climb over. Let us know what kind of response you get. I admire your effort.

david