Pain killer suggestions

[Sahara]

Has somemone of you ever tried a kind of anti-stress- and/or anti-pain-training? Does this help?Are there exercises concerning pain reduction? Do you know some links?

 

[pogoman]

I am suffering from pain. It is mostly located in my legs (muscles, feels like lactic acid) and in my arms.

If I use my hands and arms to read a book, use my laptop, or something else and it burns, and my joints eventually makes strange cracking sounds, especially when i stretch them out.

I also suffer from pain in my legs. Walking or standing still a few minutes can lead to muscle tension or cramps which also hurts.
.......

You have symptoms very similar to me, quite a few good suggestions on pain meds.

Other than opiates, I did find NSAIDs like Advil and Meloxicam helped, unfortunately they can/will cause ulcers long term and they raise the blood pressure also.

However, I will go on a tangent here and ask you if you have had blood tests for muscle damage or EMG tests??
The CPK test is pretty common (in the US at least) to check for muscle damages and if it is raised then tests to check for inflammation can be done.

 

[deleder2k]

I agree to that. In the best of the worlds, patients should be able to contribute to the decision making when it comes to their health care, but it gets very difficult when it comes to pain management, especially in the light of having ME, and especially in this day and age.

Perhaps I am lucky. Some doctors in Norway (and I guess in many countries as well) about prescribing strong opioids against pain that is considered idiopathic. Perhaps I convinced my doctor that my pain was real indeed when I did some joint cracking in front of her. She said that the sound was horrible that she couldn't stand it lol.

I got Palexia IR (tapentadol) today. It targets neuropathic pain better than Oxycodone. She said I could try it out.
OxyContin was also on the table, but if I can limit the use to every other day, or slightly more than that I can continue to use IR. I don't like the idea to drive on opioids, so I will try IR versions of opioids for a few months and see if I can manage. My goal is to only use 30 pills per 60 days, but if it was necessary I could get "slightly more" (whatever that means).

 

[daisybell]

I find that making sure I take magnesium daily or twice daily helps to reduce the lactic acid type pain. Sometimes ibuprofen helps with joint and muscle pain....but not always.

 

[deleder2k]

I find that making sure I take magnesium daily or twice daily helps to reduce the lactic acid type pain. Sometimes ibuprofen helps with joint and muscle pain....but not always.

I do take magnesium every day. I consider quitting it. Doesn't feel like it help with cramps or pain at all... The only good thing about it is that it is cheap

 

[waiting]

Another ME patient is dealing with pain and their DR suggested asking the pharmacist which Rx they would recommend for their particular pain.

... the suggestion being pharmacists have lots of education & experience on meds.

 

[CFS_for_19_years]

The first pain medicine doctor I saw gave me a little education on managing pain. In short, he said, the more pain you have, the more pain you will have (very simplified). Something about once the pain (nerve) pathways are sensitized, you become more sensitive to the pain. So, his recommendation was to keep pain in check - that could include activity modification, stretching, and/or pain medication, or whatever works for you. Conversely, he said, the less pain you have, the easier it will be to control pain in the long run.

So trying to tough it out is not good. My own thoughts go like this: Am I at the white knuckle point? (The point at which I am mentally tense about it.) Is the pain making it hard for me to concentrate on reading or watching TV? On my own scale of 1 to 10, is the pain about a 6? If I can answer yes to these questions, then I think it's time to take one Vicodin.

I record the time I take the Vicodin to the nearest hour. Then I try to find some mental activity for the next hour or so. I allow myself to have one Vicodin at the most every 2 hours (90 minutes for the first interval), up to 4 times a day. If I take one Vicodin at 2:00, then I can have another one at 4:00, if I feel I need it, but not before. This has worked out well for me. Keep in mind, I take one morphine tablet at the same time every day, so the Vicodin is for breakthrough pain. I only allow myself to think of taking additional doses once an hour, at the top of the hour.

Example: If I take my first dose of Vicodin at 1:15, then I won't consider taking another dose until 3:00. At 3:00 I ask myself if I can get through the next hour without another dose. If I can wait, then I won't think about it again at 4:00.

Before the pain meds kick in, sometimes I find that distraction helps, but it's got to be something that uses a lot of brain cells and concentration, not something as passive as watching TV. For example, I find that working on a hobby will get me through the first 60-90 minutes of waiting for Vicodin to start working. It takes energy to focus, but I can rest and stop working on the hobby once the Vicodin kicks in. I DON'T find that distraction is a substitute for drugs, because the pain I have will eventually worsen unless I treat it with medication.

One important goal I have is to keep pain from interfering with sleep. In an average month, pain will interfere with sleep one-third of the time. I count how many days I took pain medication at midnight or later. My doctor tried to lower my morphine dose so that I wasn't taking it every day. When that happened, my Vicodin use increased, and there were more nights when I was taking pain medication at midnight or later. I showed this to my doctor and he put me back on a daily dose of morphine.

I chart my medications so that it's all on one piece of paper; I showed this to my doctor and he likes my system. I've attached a blank chart so you can see what I use. Each day of the month has one column.

 

[Violeta]

Perhaps I am lucky. Some doctors in Norway (and I guess in many countries as well) about prescribing strong opioids against pain that is considered idiopathic. Perhaps I convinced my doctor that my pain was real indeed when I did some joint cracking in front of her. She said that the sound was horrible that she couldn't stand it lol.

I got Palexia IR (tapentadol) today. It targets neuropathic pain better than Oxycodone. She said I could try it out.
OxyContin was also on the table, but if I can limit the use to every other day, or slightly more than that I can continue to use IR. I don't like the idea to drive on opioids, so I will try IR versions of opioids for a few months and see if I can manage. My goal is to only use 30 pills per 60 days, but if it was necessary I could get "slightly more" (whatever that means).

I would be careful with tapentadol, it can have some awful side effects.

Commonly reported side effects of tapentadol include drowsiness, nausea, and vomiting. Other side effects include pruritus, constipation, and xerostomia. See below for a comprehensive list of adverse effects.

For the Consumer
Applies to tapentadol: oral solution, oral tablet, oral tablet extended release

As well as its needed effects, tapentadol may cause unwanted side effects that require medical attention.

If any of the following side effects occur while taking tapentadol, check with your doctor immediately:

Less common

• Bladder pain
• bloody or cloudy urine
• body aches or pain
• chills
• cough
• difficult, burning, or painful urination
• difficulty with breathing
• fever
• headache
• loss of voice
• lower back or side pain
• muscle aches
• unusual tiredness or weakness

Rare

• Anxiety
• being forgetful or confused
• clumsiness or unsteadiness
• convulsions
• drowsiness
• fast or irregular heartbeat
• feeling drunk
• irritability or restlessness
• joint pain, stiffness, or swelling
• pale or blue lips, fingernails, or skin
• rash, hives, or itching
• sensation of heaviness
• shakiness or trembling
• slurred speech
• swelling of the eyelids, face, lips, hands, or feet
• tightness in the chest
• trouble with speaking or hoarseness
• troubled breathing or swallowing

 

[CFS_for_19_years]

@Violeta, all drugs have side effects which must be balanced against possible benefits. There are risks to having chronic uncontrolled pain, such as early death, sleep disturbance and depression. The PDR, which lists all known side effects for listed medications, is written by attorneys for the drug companies. The list of side effects are mostly compiled from drug trials done on hundreds of patients.

From the book Medical Records for Attorneys:

Written by liability-sensitive drug manufacturers, the PDR is notoriously defensive, listing every known possible contraindication to any listed drug, any conceivable adverse consequence (side effect) for which there is any medical evidence, etc.
Therefore, although the PDR alone will not provide a "balanced" perspective on the likely side effects of a medication, it will at least enable you to identify the main purpose of any prescribed drug.

When a patient receives a prescription for the first time, the doctor and/or the pharmacist counsel the patient regarding the most common and/or serious side effects and what to watch for. Every time I've been given a new drug and/or refill, I've received a printed sheet listing all side effects.

 

[CFS_for_19_years]

Has somemone of you ever tried a kind of anti-stress- and/or anti-pain-training? Does this help?Are there exercises concerning pain reduction? Do you know some links?

This book was recommended reading from my pain doctor:
http://www.amazon.com/Managing-Pain-Before-Manages-You/dp/0898622247

I thought I got some benefit from reading books written by Devin Starlanyl, MD, a rheumatologist who has fibromyalgia:
http://www.amazon.com/s/ref=nb_sb_n...devin+starlanyl&rh=n:283155,k:devin+starlanyl

 

[Sahara]

This book was recommended reading from my pain doctor:
http://www.amazon.com/Managing-Pain-Before-Manages-You/dp/0898622247

I thought I got some benefit from reading books written by Devin Starlanyl, MD, a rheumatologist who has fibromyalgia:
http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias=stripbooks&field-keywords=devin starlanyl&rh=n:283155,k:devin starlanyl

ok. thank you

 

[deleder2k]

@Violeta, thanks. I must say that I am not very concerned about dangerous side effects of opioids (except tolerance/addiction).

I have tried 50 mg Tapentadol two times now. No major side effects to mention. Somewhat drier mouth than usual and slight dizziness was what I experienced.

 

[douglasmich]

I have had chronic back pain since 2012. I have herniated L4-L5 and L5-S1 with sacroilliac issues too.

I was using NSAIDs untill the wrecked my gut, then used some opiods for a while and developed severe constipation.

I accidentally discovered coffee enemas benefits for pain by using one for constipation. Id always heard of these being used in quackery so i never thought id be doing one. That was untill my constipation was so bad that normal enemas were not working anymore. After the coffee enema my pain levels were at an all time low. And i have been doing daily coffee enemas ever since. No NSAIDS, no opiods and no side effects.

Dont knock it untill you try it.

 

[panckage]

@Violeta, thanks. I must say that I am not very concerned about dangerous side effects of opioids (except tolerance/addiction).

Don't you find opioids kill your emotions (anhedonia I guess) if you take them for too long?

 

[Violeta]

Don't you find opioids kill your emotions (anhedonia I guess) if you take them for too long?

If they do, it might be difficult for one to notice precisely because of the lack of emotion and addiction.

Edit: I didn't word it very well. I didn't intend this to point to anyone in particular's response to opiods.

 

[deleder2k]

Don't you find opioids kill your emotions (anhedonia I guess) if you take them for too long?

I have no clue.. I only take instant release every other day or less. I haven't experienced anything like that.

 

[panckage]

I have no clue.. I only take instant release every other day or less. I haven't experienced anything like that.

That's good. I've limited my opiate use to once every 3 days because of that. If you haven't ever tried 100mg tramadol ER i would highly recommend it. It lasted way longer and had given me incredible sleep! Paradoxically tramadol IR would make it difficult to sleep

 

[Hip]

It is mostly located in my legs (muscles, feels like lactic acid) and in my arms.

Assuming the pain is actually caused by high lactic acids levels in your muscles, as you suggest may be the case, then I wonder if a very simple treatment involving taking say a ¼ teaspoon of sodium bicarbonate (sold as bicarbonate of soda in supermarkets) would neutralize the acid, and thereby remedy the pain. This study suggests that sodium bicarbonate can help neutralize lactate circulating in the blood.

Obviously don't take the bicarb near a meal, as it will neutralize the stomach acid that you need for digestion.

If you look at the findings of severe ME/CFS patient Dr Mark Vink, he found that his lactate was abnormally high even after tiny amounts of exercise. So a lactate explanation for your pain seems plausible, and it may therefore be worth trying out some anti-lactic acid treatments.



Sodium bicarbonate has also been found by members of this forum to be a "PEM Buster" — ie, a supplement that helps prevent or mitigate PEM after exercise. See the list of PEM Busters in this post.

What's interesting is that most of the PEM Busters listed in that post (that various forum members have identified) are supplements that reduce the amount of lactate levels produced by exercise.

 

[deleder2k]

Thanks, @Hip. I'll try that.