Treating chronic pain

Whatever4 · **Posted:** Sat Oct 29, 2011 11:56 am

This letter was given to us at Pain Class (Functional Restoration Program) to give to our families and friends. It's long but excellent. Some of the more emotional folk in the class cried when they read it.

Quote:

Letter to People without Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome...

:::snip (OW that hurt):::

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

TIPS FOR DEALING WITH PEOPLE IN PAIN...

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

Excellent article, more at link.

Whatever4 · **Posted:** Thu Nov 17, 2011 5:47 pm

Graduated from Pain Class today (AKA Functional Restoration Program). In the past 8 weeks, I lost 8 lbs. (!!!) and gained much flexibility. I went from not being able to touch the floor when leaning from the waist to easily touching floor with the first 2 knuckles of my fingers. I've added 15 degrees in range of motion on each side of my neck. I can stand for 90 minutes at a time. I can balance on each leg for more than a minute. 2 of my fellow Painees gained more than an inch in height due to better posture and stronger core muscles. I now have strategies for dealing with chronic pain that work for me.

I haz a happi. I haz a pwowd. I needz a vacation.

Cross posted in Hijack.

realist · **Joined:** Fri Jan 23, 2009 1:33 pm **Posts:** 23525

That's fantastic, W4!!

=D>

esseff44 · **Posted:** Thu Nov 17, 2011 6:39 pm

Highlands wrote:

This may be a little too personal, but one of the major side effects of narcotic pain meds is constipation. Seek advice from your health care provider on which kind of stool softener Is best for you.

That is one of the great motivations to stop taking the narcotic pain meds as soon as you can get by without them. It takes a while to get back to normal.

Whatever4 · **Posted:** Thu Nov 17, 2011 6:50 pm

We learned that narcotics (opioids) change the pain threshold in chronic pain. So relying on narcotics not only leaves you subject to nasty side effects, problems with tolerance and addiction, but it actually lowers the point at which you feel pain. Opioids = BAD.

I also read that about 1/3 of the pain relief you get from morphine comes from knowing you are getting morphine.

kate520 · **Posted:** Thu Nov 17, 2011 8:51 pm

I has a pwowd for you, too, W4. And a :hug:

congratulations, those are big accomplishments.

Sterngard Friegen · **Posted:** Thu Nov 17, 2011 9:38 pm

Good for you, W4. Now teach Foogie some of your learned tricks.

Whatever4 · **Posted:** Thu Nov 17, 2011 9:38 pm

kate520 wrote:

I has a pwowd for you, too, W4. And a :hug:

congratulations, those are big accomplishments.

Thanks!

Did you notice at FEMA camp 17 that I couldn't turn my head to the left without turning my whole body? Or that I couldn't stand for longer that 10 minutes? I wonder if Stern ever noticed that I knocked over that vase in the Warden's Office? :-$

Sterngard Friegen · **Posted:** Thu Nov 17, 2011 9:40 pm

Don't worry. It was only a Ming Dynasty vase worth $300,000. It was one of the cheaper baubles at the Camp. I'm just glad you got out of the way when the car door closed itself.

kate520 · **Posted:** Fri Nov 18, 2011 12:41 am

Yes, I did notice, especially when we were relaxing at the hotel after dinner. The massage the day before helped..for how long?

Whatever4 · **Posted:** Fri Nov 18, 2011 12:57 am

kate520 wrote:

Yes, I did notice, especially when we were relaxing at the hotel after dinner. The massage the day before helped..for how long?

The ease of movement lasted a few days before the stiffness came back, but the pain level never changed. I still laugh when I remember that woman: She stood on my butt and did lunges on my back!! :shock:

She wanted to come back to the hotel for another hour because I was so badly off.

lyssandri · **Posted:** Sun Nov 20, 2011 4:17 am

Sterngard Friegen wrote:

Pappy, it's strange, but opiates are not addictive as long as they are really dulling real pain. Once you continue to take them for pain you believe you might get, then they become addictive.

Even though I've been on narcotic pain meds for - geeze- almost 8 years now (really? yeesh!) My primary is morphine, which I take extended release twice a day, and hydrocodone which is for breaktrhough pain. I've found that if I'm having a really good day, I'll sometimes actually just forget to take them, so I figure that's a pretty good clue that I'm not having too much of a problem, yet, though I have noticed that if I have to go without one for more than 3 or 4 days (which happens when we are having trouble getting the insurance company to authorize it again or some such other bureaucratic folderol) I will start to get kind of twitchy - sort of like restless legs syndrome. Interestingly, though, I don't ever feel any kind of a craving for the meds during those times. I dunno. I suspect I'll be on pain meds for most of the rest of my life, though, so while I do try to make sure I'm careful about how I use them (like I don't keep the bottles in my room, so I can't just grab it off the shelf and take more - I have to have my husband or the friend who helps care for me when hubby's at work bring me one, and they can help me keep tabs on it.)

lyssandri · **Posted:** Sun Nov 20, 2011 4:27 am

Highlands wrote:

This may be a little too personal, but one of the major side effects of narcotic pain meds is constipation. Seek advice from your health care provider on which kind of stool softener Is best for you.

Personal or not, thanks for the info

lyssandri · **Posted:** Sun Nov 20, 2011 6:22 am

Whatever4 wrote:

This letter was given to us at Pain Class (Functional Restoration Program) to give to our families and friends. It's long but excellent. Some of the more emotional folk in the class cried when they read it.

Thanks for posting this - it's extremely well written and very, very true

lyssandri · **Posted:** Sun Nov 20, 2011 6:24 am

Whatever4 wrote:

Graduated from Pain Class today (AKA Functional Restoration Program).

$\:D/$

$\:D/$

That's wonderful news, W4 - I'm so glad you're making so much progress!!!!

Foggy · **Posted:** Sun Nov 20, 2011 7:31 am

Speaking of the drugs, I ran out of oxycontin on Wednesday. Not missing it, and even if I was, nobody will prescribe it. So that's the end of that one.

Still taking the Tramadol and the Lodine. Of those, only the Tramadol is addictive (opiate agonist). But the pain is receding faster than I thought it would. I may give up the Tramadol by Turkey Day or the following week.

Lodine isn't addictive at all, and works great on my other sources of chronic pain (back, knee).

Wifehorn took the Vicodin and the Percocets back to the pharmacy. No thank you.

Feets still hurt, hands still hurt, legs still hurt, still have poor motor control. But I can go up and down stairs if I use the railing and the wall, I can walk without using walls or furniture for support, and I can use one hand to carry something instead of needing both hands to keep from falling. So, umm ... yeah. Improving faster than I thought. That's a good thing.

lyssandri · **Posted:** Sun Nov 20, 2011 8:01 am

Foggy wrote:

So, umm ... yeah. Improving faster than I thought. That's a good thing.

That is SO great to hear!! :hug:

esseff44 · **Posted:** Sun Nov 20, 2011 1:37 pm

Foggy wrote:

Quote:

Feets still hurt, hands still hurt, legs still hurt, still have poor motor control. But I can go up and down stairs if I use the railing and the wall, I can walk without using walls or furniture for support, and I can use one hand to carry something instead of needing both hands to keep from falling. So, umm ... yeah. Improving faster than I thought. That's a good thing.

That's very good news. It sounds like you are on the milder end of the G-B scale. That's really a lot of progress for a few weeks (which seemed like an eternity, I'm sure.)

Sterngard Friegen · **Posted:** Sun Nov 20, 2011 1:54 pm

I also suspect the love of the flock (I hate herd or that new term that I've already forgotten) played a role as well. When you are loved you can often shoulder a load that is otherwise too much to bear.

Whatever4 · **Posted:** Sun Nov 20, 2011 6:31 pm

Sterngard Friegen wrote:

I also suspect the love of the flock (I hate herd or that new term that I've already forgotten) played a role as well. When you are loved you can often shoulder a load that is otherwise too much to bear.

Flock you, Stern! :lol:

Foogster:
It was all our combined warm fuzzies that gave you strength! (Plus Wifehorn and the Chicklets, medical professionals, pharmaceuticals, neighbors and local friends, hard work, Foggy's innate stubbornness, etc.)

:xo

Foggy · **Posted:** Sun Nov 20, 2011 6:59 pm

I get by with a little LOT of help from my friends, with a lot of help from my friends!!

Whatever4 wrote:

Foogster:
It was all our combined warm fuzzies that gave you strength!

I do believe it. I do believe it's true!

Oh wait, that's Simon and Garfunkel.

... friends, and fambly, and even my kitteh has been working hard to nurse me back to health.

Long, slow road to recovery still, but at least I'm on the road and moving forward. Wifehorn and I tried to jumpstart my car ... hasn't been driven in what, 6 weeks almost? Spent about 10 - 15 minutes outside. And it didn't work, that sucker is really most sincerely dead. Have to call AAA in the morning.

That 10 or 15 minutes really took it out of me. More exercise than in the past 6 weeks combined. Still, I did it and I'll do more with each passing day.

Thanks again to everyone for all the help and contributions and well wishes. I expected I wouldn't be fully recovered until next year, and it still might take that long, but it seems like not so awful any more.

:hug:

SueDB · **Posted:** Sun Nov 20, 2011 8:03 pm

Has anyone had any experience with using Medical Marijuana or the synthetics (Marinol etc) in treating chronic pain??

I do realize it is against Federal Law (due to those pesky treaties), but many states (Washington) have passed laws permitting certain patients to use the drug on their doctor's recommendation.

Does it work or is it just blowing smoke? :mrgreen:

esseff44 · **Posted:** Sun Nov 20, 2011 9:47 pm

SuEdB wrote:

Has anyone had any experience with using Medical Marijuana or the synthetics (Marinol etc) in treating chronic pain??

I do realize it is against Federal Law (due to those pesky treaties), but many states (Washington) have passed laws permitting certain patients to use the drug on their doctor's recommendation.

Does it work or is it just blowing smoke? :mrgreen:

http://en.wikipedia.org/wiki/Marinol

No, I don't think it's blowing smoke.
there's the long article in wikipedia answering that question but check sources as one always needs to with a controversial subject. Marinol is legal with a prescription anywhere in US. The trouble with Marinol is that it is inferior in many ways to the natural form. For me, it was not something I wanted to continue to use. I have most of the prescription still in the fridge since 2001. I have a prescription for the real stuff as well. I can get a prescription for just about any pain reliever I ask for because of nerve damage. In the middle of chemo infusions, I had a lot of head, neck and all body aches and pain. Tylonol and Ativan worked well enough. Different pathways, different drugs . People do not light up when they are in the hospital no matter what condition they have. Maybe one day, there will be a little pot smoking room at the end of the hall.

In the article, it says mj has mild analgesic properties. It also says people with ms have found it helps with pain and spasms and people with Tourette's found it helps control tics.

I think there are so many pathways to pain that no drug is good for everything which is why people keep trying different things until they find something that works. The good thing about marijuana is that it has few if any negative or harmful side effects and probably none for people who are trying it out to see how it works.

It's good for a lot of things. But for pain relief, people have to try it out just like they do every other pain reliever.

lyssandri · **Posted:** Tue Nov 22, 2011 12:55 pm

esseff44 wrote:

In the article, it says mj has mild analgesic properties. It also says people with ms have found it helps with pain and spasms and people with Tourette's found it helps control tics.

I hadn't heard that before, though it lines up with some of my own experience. I never was a very heavy user of MJ, but when I did, I didn't have as many tics as I normally do. That's really interesting, though.

ducktape · **Posted:** Tue Nov 22, 2011 1:27 pm

I recently watched a doc from PBS on the medical uses of MJ ... which, frankly, were pretty awesome.

In any case, the edibles seem to do better for chronic pain than smoking it. Also, there are something like 140 active cannibinoids, of which THC is only one. THC is the one that makes you most high (head trip), while CMD and CBD give you the body trip -- better for those in pain who aren't necessarily looking to get high.

Falsehoods unchallenged only fester and grow.

Treating chronic pain

Who is online