Enbloc.... Happy Birthday to you! I hope you have an enjoyable day tomorrow!

I have SFN and am just beginning my journey. My quality of life right now is not very far about zero and without the vicodin there would be none. I doubt I'd even be able to speak because of the pain I would have.

Susanne.....I also have a family dr that we've seen for years. She strongly suggested that I put myself on a pain mgmt. schedule with the vicodin but I didn't listen to her initially and just took it when I could not take the pain anymore. I have since learned she is correct in pain mgmt. Neuro's do not like to give out pain meds and mine of only 4 visits is one of them. He doesn't like the fact that I'm taking something but didn't tell me to stop....which I would not have anyway. I now take 1/2 a vicodin every 3 to 4 hours and have to add 1/2 Xanax when it's really bad. The pain still doesn't go away but it taps it down a little.

My hope is that Emory in Atl (my first visit is not until March) will be able to help me and maybe I won't always be on opiates but I also know there is a chance I will be.

Sorry to hijack the thread but just wanted to put my 2 cents in

Debi from Georgia

Hi Debi,

the key to pain is to keep it 'in the box'.

It is easier to keep pain under control with regular dosage that it is to get it under control once it has escalated.

I take my pain medications regularly.

I know many people who insist on taking pain medication only when the pain gets bad. It takes MORE medication to bring the pain under control that way.

It is also very hard on your system to have that stress.

I hope your appointment at Emory is the beginning of a new stage in your journey.

Hugs, Elaine.

Today has been a perfect example. I felt bad when I got up. Hurting all over with the feet very sore. I took my meds (mornings always include vicodin) and then drank some coffee. This usually helps and then I'll feel ok. But this was one of those 'mornings'. The meds did not seem to kick in.......I went and laid down and realized I was hurting so bad I was 'moaning'......and I hate THAT....got up and took 1/2 a Xanax. Woke up when my mom came in a few minutes ago. I feel ok but am scared that if I don't take it easy it will start all over. I'm new at all this and the pain is so unpredictable. I've been able to go between the bed, recliner and dining room table but lately it seems actually laying down flat in the bed helps the most and I hate THAT too

I do manage to walk the dog in our very large yard at least 3 or 4 times a day. There are times my husband or kids have to do it.....whoever is around at that particular time. I do move around everyday because I know if I don't that will cause more problems. I walk like a 100 year old lady but I don't care. I do what I can.

Thanks everybody

Debi from Georgia

Good thought, Mrs. D. I think my last bone scan was in 2007.

I have always had amazing bone scans, very very bright white bones, no osteoporosis.

But anything is possible.

At least I don't think I've had a bone scan since 2007.

How time does slip away when you're having fun!

Hugs, Elaine

I also take my pain meds on a regular basis. I have a Pain Management doctor that has been prescribing for the past few years. Did do the usual spine procedures/injections, SCS trial; but the only thing that seems to help
me get some quality time, in spite of 24/7 pain, to a level is as you mentioned; is taking meds on a regular basis.

I am on a pretty high dose of narcotics; take 60mgs. Oxycontin every 6 hrs, as well a Percocet for breakthru pain. Unfortunately, the dependency for reducing pain is part of the end result.



Gerry

Pain has no beginning or end....when I'm in pain it is all that there is.

I would do anything to make it stop.

I cannot take RX Pain meds because my Immune system rebels so completely that it is as bad as the pain.

I really want to be unconscious.

The problem with RX Pain meds as they exist today is that most of them, for most people will not continue to be effective over the long term.

They work, they have to be increased, and eventually not only do they not work well, they cause 'rebound pain'.

Unfortunately they are also highly abused by many many people, who take them to escape from life, rather than physical pain.

These are the reasons why for most people it is very difficult to get long term prescriptions for RX Pain Meds.

Doctors are closely monitored by the DEA when they write prescriptions for Pain RX, and they are called if they prescribe too often or too much for patients.

My heart goes out to those who rely on pain RX, because medical science hasn't really managed to address the issue of pain that will provide safe reliable relief for us.

I do not know what I will be able to do when I have to face excruciating pain. I've been sent home with knee surgery, on Tylenol. I use Cymbalta, Aleve, Turmeric, and Relaxation and Meditation to manage now.

Hugs, Elaine

Elaine, I really can't let some of these assumptions about long term opiate therapy go unchallenged. While everything that you said is true in some cases, it is very one sided.
Many people are able to be maintained for many years, more than ten, on the same dose, once an effective level of pain relief has been reached. The reason for escalating dosages in many cases is the ineffectiveness of the original medication. It is the nature of opiates that you cannot necessarily start out with a dose sufficient for moderate to severe pain but have to work up to it.

I dislike being an apologist for narcotics but I have done a lot of research as I am likely to be on them for the rest of my life. Medical journals, books, and periodicals like practical pain management give examples of long term studies, longevity studies, etc. which show that the stereotypes you mention are not the whole story. Opiates are still the safest and most effective pain relievers we have, with a track record thousands of years old, and it never ceases to amaze me that while many anti-depressants are also addictive, and in the case of Effexor, may never be able to be discontinued, no one makes a peep. It is much easier to discontinue morphine!

I am sure that you do not mean to make it sound as if everyone on these drugs is on them for psychological gratification, but that does come through. I can assure you that as a college student in the 1979-1982 period I know what getting high feels like. I have yet to duplicate that feeling despite the heavy doses available to me. I can, however, make dinner, help my son with his schoolwork, and go for a long car ride.

Rebound pain is much more talked about than actually documented. I even discontinued my morphine for a while when the burning skin symptom started. Unfortunately while my legs hurt much more the burning did not go away. It is just another of the weird things SFN can do. Most of the things I have read about rebound pain either discount it as rare ( articles by pain doctors) or use it as a scare tactic.

If someone's symptoms respond to other treatments, they would be wise to save the heavy hitters for the day they really need them. For some of us who are only getting worse and for whom there is no treatment that day is now. It is unfair to paint with too broad a brush. At 52 I know that this is what the rest of my life will look like, that a wheelchair is in my immediate future, that I go upstairs on my hands and knees now and will not be able to do even that someday. I am grateful for the level of pain relief I have and hopeful that I will be able to stay at this dosage for a long time.

Susanne,

Thank you for your response.

I for one, have been on the same dose of Oxycontin for the past few years, along with the Percocet. I have 24/7 pain from spine/PN issues; but today the level was about 6
(at times has been much higher) Today, I went for my appointment with PM doctor's assistant. I am given a once a month pick-up date for the meds. Without prior knowledge, I, as well as all those on these type of meds, are given a urine test to be sure the meds are not being abused.

If you noticed; I did Not mention being "addicted"; but "dependent"........Dependent for some pain relief so I can at least get thru the day and actully accomplish, laundry, make lunch and dinner. Now my cooking is not as good as it once was because I make the easiest, least complicated meals.

I will be on these meds for the rest of my life. I started on a lower dose which was gradally increased until a tolerable pain management was/is accomplished. As previously mentioned, I have been on the same dose for the past few years.

Never...never....has there been any high; just the ability to be there and enjoy some time with my husband, children, and grandchildren. Fortunately, the Oxycontin/Percocet, does not put me in la la land, but in a place where the pain is more tolerable.


Gerry

Yes, Gerry, I should have edited addicted to dependent. Addiction is a psychological response and dependency is a physiological response.
I am on 30 mg MS Contin three times a day with 7.5 Percocet for breakthrough pain. I am supposed to start on Baclofen for muscle spasticity, but still waiting on Cigna pharmacy. I have hereditary neuropathy as well as spinal arthritis and the pain is unrelenting and distracting. I would have no quality of life or ability to function even in a limited sense without the meds and I am sure I would be a burden to my family.

There is really no relationship between appropriate and inappropriate uses of these drugs and it is hard for those of us already suffering from chronic pain to be further stigmatized by the assumption that there is.