Pain killer suggestions

[deleder2k]

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.

The pain in my arms is my biggest issue. Burning and joint cracking are key words that describe my pain. I can reduce it by not using my hands at all, but that seems like a boring life. I have seen a rheumatologist who ruled out R.A. I showed him my joint cracking, and he said it was normal, but he couldn't say much more than that.

I have tried Ibuprofen, Paracetamol, Tramadol, Diflofenac and Amitriptilin. They do not help, except for the latter one, but it made me extremely tired, even after 4 weeks, so i quit it.

If I take 100mg of tramadol instant release _before_ I do stuff that can lead to pain it helps somewhat. I told my doc this and she gave me OxyNorm instant release (oxycodone) 10 mg. I have been using 15 tablets a month for the last half year. The capsules gives pain relief for 4 hours. It has been working pretty alright, but my pain is increasing from month to month. It is also hard to know when I need to take one capsule or not. My doc says that I need to take a capsule whenever I feel that my pain is increasing. Sometimes my pain is increasing, but after an hour or so it can almost vanish. Other times it only gets worse and worse, and by the time I've taken it I am in extreme pain, and even with 10 mg Oxycodone it isn't sufficient to take more than say 50% of the pain away.

Is anyone in a similar situation? Say I've used Oxycodone 10mg instant release for every other day the last 4 months. Could that make tolerant, or is my dosage too low, and is the half-life so short that it is impossible?


What drugs are available? Has anyone tried Palexia/Nycunta (tapentadol)? It is supposed to be a better, and more potent than Tramadol. Could an opiod rotation work out if I am indeed tolerant to Oxycodone?

I also know that Buprenorphine (norspan patch) is available. I do not know if my pain enough is serious enough for the doctor to consider it. I do not like the idea of having an opioid in my blood 24/7. I need to be able to drive my car, and I also use zopiclone for sleep. The idea of being somewhat sedated all day long scares me.

OxyContin is also an option, but I don't want to end up like a junkie.


I hope anyone has some experiences to share with me. I am going to my GP on Thursday to discuss this. I will also discuss whether she agrees that I should be referred to the pain clinic at the hospital.

 

[kangaSue]

Ahh, where to start. It will depend on what type of pain you have for what will or won't work. And what country you're in for some things.

In my experience, a pain clinic was a complete waste of time as I didn't want, and couldn't tolerate, any opiates or NSAIDS and they had nothing else to offer although in some countries they also offer low dose naltrexone or ketamine. Fentanyl patches are an alternative to the heavy duty buprenorphine patch.

Flupirtine is a unique non-steroid, non NSAID analgesic only available in Europe. It has a close relative used as an anti-epileptic, retigabine/ezogabine which has a lesser analgesic effect.

Gabapentin or pregabalin can help for neuropathic pain but you need to keep upping the dose over time.

If the cause is ischemic, nitrate vasodilators can help but I think you've been down that route. I found low dose allopurinol effective for ischemic pain too before I developed tolerance issues to it (ischemia causes a build-up of xanthine oxidase, allopurinol is a xanthine oxidase inhibitor and a strong antioxidant med in general).

Low dose dextroamphetamine is effective for some chronic pain issues, I don't think you can drive with this though. Low dose anti-depressant meds can have a beneficial effect too, mirtazapine (Remeron) was the most effective one for me for chronic abdominal pain.

 

[Deltrus]

I feel like pain doesn't have really good solutions. Everything seems to get tolerance. Marijuana and norepinephrine reuptake inhibitors seem to have the best long term outcomes.

Alternating hot and cold showers seem to stop pain quite well for me. The trouble is that it takes a lot of mental energy to immerse yourself in cold. I'm only able to do it on my best days.

I'm not an expert in pain, all the pain I get is tolerable.

 

[Kati]

Hi @deleder2k i wanted to send words of support. i am sorry you are struggling with pain, especially the kind that prevents you from doing activities that augments your quality of life.

I too have 'lactic acid' kind of pain, mostly in my quads. It is worse if I am spending too much time upright. I am not taking anything for that, because somehow I manage by resting, it's the best solution for me. The lactic acid pain does not cause sharp and untenable pain for me, it's more like the burn you feel after 160 km bike ride. i am not saying it's pleasant either, mind you.

i was on Oxycodone in the fall following 2 surgeries. It was the surgeon's choice, and when I went to my GP and told her she was sure I would get addicted to them. It turned out I stopped taking them when my pain became tolerable to go without it, with time, as expected. There was no problem with getting addicted. I still have leftover tablets at the bottom of my meds box.

If you take one tablet every other day, I wouldn't call this being dependant on the drug or developing tolerance. If your pain is not well taken care of during the time it is supposed to be effective, then adding better analgesia makes sense. Perhaps before considering upping the opioids, trying other classes of pain meds could make sense. Gabapentin, maybe. A lot of it is trial and errors because pain is so different for each one of us and we are all reacting to meds differently.

Of note I am on a couple of sleeping pills and being on Oxycodone did not alter my alertness or sleeping patterns. The opioid buzz is unfortunately only nice the first time you take it.

Best always. i hope you figure out what is right for you, it's what matters.

 

[actup]

I agree that pain control is very tricky especially when dealing with neuropathic pain. I had good results with low dose methadone for muscle and joint pain and neuropathy for several years but decided to go through withdrawal in order to trial non -opiate meds including Tramadol (poor efficacy) and Cox 2 inhibitors(caused severe tachycardia). Sought out a pain clinic ( different one) and due to their no methadone policy am now using oxycodone. It's helpful but methadone was more effective for the neuropathy. It is an NMDA receptor antagonist like ketamine. I did well with a single dose of 7.5-10mg per day as it has a very long half life. The average dose for methadone clinic patients is from 80-120 mg to put the pain dosage into perspective. Prescribed methadone is also dirt cheap.

I am also concerned about tolerance long term so plan to try a vaped high cbd, low thc mj concentrate at low dose. Legal in my state fortunately and at low dose cost efficient. Hoping for an immunomodulatory effect. Unfortunately the pendulum has swung too far toward very restrictive chronic pain mgmt policy. One more unnecessarily complex issue to add to our already overly complex lives which makes PR's swarm intelligence so important.

 

[Sahara]

hello,

here my recipe for pain:

1. rest when pain comes. it is often a signal that you overdo something. make a break, rest, rest, rest and watch what happens......

2. stay within your limits!!! and adapt your activities to your daily energy (that changes from day to day!)

3. try to accept this! accept your illness! accept the fact, that at the moment you cannot enforce power, energy, health. be wise and adapt your behavior to this! try to live with it, not ignore and get rid of it (doesn`t work)!

4. meditate or do some kind of relaxation exercises when pain comes (autogenic training, special music, that deeply relaxes the body, have a warm bath, deep slowly breathing,...) needs about 15-20 min. that you can feel that pain reduces - if you once have found the best method for you!

5. distract your mind with thoughts that feel good in your body: think of people you love, use your imagination to invent a picture where you feel good or watch photographs to focus on good feelings. don`t get stuck in the thoughts of pain, that worsens pains often!

good luck!

 

[lansbergen]

If I take 100mg of tramadol instant release _before_ I do stuff that can lead to pain it helps somewhat

I would not do that. Pain is a warning signal.

Have you tried paracetemol and Benzydaminehydrochloride cream, after the pain starts?

When the pain starts: rest ,rest ,rest.

Burning and joint cracking are key words that describe my pain.

When the cracking appears it is to late. Takes a lot longer to recover.

 

[Valentijn]

@deleder2k - I had similar problems, but it's greatly diminished after a couple years of being treated for late-stage Lyme. Injected high doses of hydroxoB12 and doing things to avoid inflammation in general (3 grams fish oil per day, digestive enzymes, and avoiding foods I don't tolerate) may have also helped.

Prior to that, the only thing which helped reliably was avoiding use of those muscles.

 

[voner]

@deleder2k,

The previous posts have given you some good advice. there are not any good options. The pain reduction you are getting with opioids is pretty good. opioids can be great for the short-term, but in the long term they become problematic. Dependence problem and tolerance to the opiod causes dosage increases, which increases the dependence,.....

I certainly empathize and identify with your feelings about not Being able to use your hands or arms is a poor way to live a life. if typing on a keyboard aggravates the pain, voice dictation is an option, although I have always found it to be a frustrating option.

Here is one of my favorite videos on the subject – Dr. Ian Carroll, of Stanford university. The talk is about options for neuropathic pain - which your burning sensation might be.....

 

[deleder2k]

Thanks for the support everyone.

@Sahara, thanks. I try to follow your recipe every day, but it is not easy to think about something else and ignore the pain when it is extremely intense. I am always in pain more or less, but it is mostly at a level where I forget about it if I concentrate on something else. The problem is when the pain develops into another level. Then it hurts so much that it is on my head 24/7 and limits me form being able to watch tv, talk with friends, read and so on.

@kangaSue, thanks for your advice. Gabapentin is definately something I'll consider.

I would not do that. Pain is a warning signal.

Have you tried paracetemol and Benzydaminehydrochloride cream, after the pain starts?

When the pain starts: rest ,rest ,rest.



When the cracking appears it is to late. Takes a lot longer to recover.

No I have not. I have tried paracetamol in combination with tramadol/oxycodone/diclofenac. It didn't not make any difference. I haven't tried the cream though. Perhaps I should discuss it with my GP.

The problem is that I wake up every morning with joint cracking. When I use my arms throughout the day the cracking sound can increase.


The question is really if I be able to use my laptop, read a book, read the newspaper, shower, or if I should skip it all due to pain. I never lift anything heavy with my arms. I never do the dishes or the laundry. I simply use my hands and arms for things that I need to do.


@Kati, thanks, I am not so worried about addiction after all when I think about it. Especially if the alternative is to suffer from pain that disables me. As long as I don't start with Oxycontin 24/7, and stay with max a capsule a day or every other day with IR I think I should be fine. I will ask my GP to refer me to the pain clinic. Perhaps they don't offer a solution, but I have nothing to lose by going there

 

[CFS_for_19_years]

If you haven't tried gabapentin (Neurontin) or pregabalin (Lyrica) I think they are worth a try, with pregabalin being the one I prefer. I have that burning pain in my quads (same as Kati described) and pregabalin helps quite a bit with this.

I have less sedation with pregabalin compared to gabapentin. Also, with gabapentin, you can keep increasing the dose, but not get any greater pain relief. This is known as a non-linear dose-response curve. Pregabalin has a linear dose-response curve, so that if you increase the dose, your pain relief will increase. Drawbacks to both meds are sedation and weight gain.

Say I've used Oxycodone 10mg instant release for every other day the last 4 months. Could that make tolerant, or is my dosage too low, and is the half-life so short that it is impossible?

This doesn't sound like a dose that would lead to tolerance. When a doctor tells you they have a concern about a pain medication, that's when you know you should be concerned. For example, there was a time when my pain from erythromelalgia (burning foot pain) was increasing and I kept having to increase my dose of Vicodin. This did concern my doctor and he prescribed morphine.

I take 15mg of long-acting morphine and one Vicodin (hydrocodone) tablet every evening, just to be sure that pain will not interfere with sleep. I find if I wait to see if pain will develop late in the evening, it can be harder to treat the pain late at night. I can still function well enough to drive during the day if I have to. Pain meds aren't scary to me any more; they allow me to function.

I think being seen in a pain clinic would be a good idea. In the meantime, I would try to treat the pain with your medication before the pain gets worse and out of control (err on the side of treating the pain, as opposed to hoping it won't get worse). I don't know if that would work for you or not, but it works for me.

 

[lansbergen]

I haven't tried the cream though. Perhaps I should discuss it with my GP.

You do not need a prescipion. The combination paracetemol and the cream worked for me. Sometimes I had to smear it every hour on the most hurting spots. I used no other meds except the immune modulator I still take.

The problem is that I wake up every morning with joint cracking. When I use my arms throughout the day the cracking sound can increase.

Try not to use your arms when they crack.

 

[deleder2k]

@CFS_for_19_years, can I ask how long you've used Vicodin? You take it daily? I guess you haven't developed any noticeable tolerance?

 

[CFS_for_19_years]

I've been taking at least one Vicodin nearly every day since about 2005. From 2005 to 2013 I took 1 to 3 Vicodin per day, without having to raise the dose. In 2013 I started taking morphine daily because I became intolerant to taking Effexor, something that was helping with burning foot pain (erythromelalgia). Today one Vicodin will still give me pain relief, and sometimes I don't need to repeat the dose, but there are times my pain is so bad I need to take another dose 2 hours later. I might have developed some tolerance to it by now - it's hard to say, but some days my pain is just worse on some days than others.

A nurse told me that fluctuating levels of opioids were worse than keeping a steady amount in your system. I think she explained that each time the levels go down, you go through withdrawal. There are nurses and maybe a doctor or two here who could verify that or explain it better.

Let me know if that helps, or if I could still explain it better.

 

[waiting]

@deleder2k
I know an ME patient who had severe, all over pain for years and was helped tremendously with prescription Nabilone. Maybe you could ask your doctor about it -- it's controlled.

Good luck & keep looking for a solution -- as you know, it's trial & error. Like the others, I can sympathize.

 

[CFS_for_19_years]

I know an ME patient who had severe, all over pain for years and was helped tremendously with prescription Nabilone. Maybe you could ask your doctor about it -- it's controlled.

IMHO I think it's a bad idea to ask for a specific pain medication, especially when it comes to controlled substances. I've never asked for a specific substance, other than asking if there's something that would last longer, or help with a specific type of pain, such as "I was wondering if there was something that would help with back spasms" or "I have problems with burning pain 24/7 that is worse at night."

Even though one might have a legitimate need for pain medication, I'm under the impression that doctors must record in their notes if a specific medication was requested, as this could be a sign of drug-seeking behavior. My doctor told me to not ever ask for a specific pain medication. Whether it was just him or a sign of how to best conduct a visit, I will now just ask for pain relief if I need it. Most pain doctors are aware of the best medications to prescribe for specific types of pain (at least I hope most are).

 

[panckage]

I have similar pain to yours @deleder2k. I find tramadol works really well (the 100mg ER is awesome) but doing opiods more than every third day leads to tolerance /withdrawal issues so I limit opiods to every third day. And the opiod I take now is kratom (similiar to tramadol)

LDN helps to decrease pain (as well as there are studies showing it reduces tolerance to opiods) but unfortunately I seem to build tolerance to it pretty quickly.

For my hand/joint pain I find moderation is he key. I have the same problem with my knees. I can maybe do a couple body weight squats a day but have to be really careful because if I do more I'll have problems going up stairs for a few days.

This leads to another possibility. I find strength training helps reduce my joint pain. I think all the pain in my joints causes me to have poor position when I use my body and then that just aggravates and makes the pains worse. I notice that the pain is especially bad if I am unable to strength train for a few weeks

The last suggestion and the most reliable is marijuana. I don't seem to build a tolerance to it and I use it daily. It even helps brain fog quite a bit too for me

 

[Kati]

IMHO I think it's a bad idea to ask for a specific pain medication, especially when it comes to controlled substances. I've never asked for a specific substance, other than asking if there's something that would last longer, or help with a specific type of pain, such as "I was wondering if there was something that would help with back spasms" or "I have problems with burning pain 24/7 that is worse at night."

Even though one might have a legitimate need for pain medication, I'm under the impression that doctors must record in their notes if a specific medication was requested, as this could be a sign of drug-seeking behavior. My doctor told me to not ever ask for a specific pain medication. Whether it was just him or a sign of how to best conduct a visit, I will now just ask for pain relief if I need it. Most pain doctors are aware of the best medications to prescribe for specific types of pain (at least I hope most are).

I agree with you, especially when discussing the different opioids. However Nabilone is not an opioid, it is a canabis derivative which is simply another possible way to take care of the pain.

 

[CFS_for_19_years]

I agree with you, especially when discussing the different opioids. However Nabilone is not an opioid, it is a canabis derivative which is simply another possible way to take care of the pain.

I was wondering why I didn't recognize the name. Thanks for pointing that out! I had a good laugh.

I still stand by my recommendation to not ask for any pain medication by name, including cannabis-based products. Years ago one pain medicine doc nearly fall out of her chair when I asked her if I might benefit from legal medical marijuana. She said "Absolutely not." Years later I'm using legal mmj for pain control and when each doctor opens up my profile I can almost sense the exact time they see "medical marijuana" on my remedy list, because their eyes lock onto it and freeze....."meeeeedical mariiiiiijuaaaaana.....hmmmm."

It's just best not to go in there and say "I think I need a Fentanyl patch" or whatever.

 

[Kati]

I was wondering why I didn't recognize the name. Thanks for pointing that out! I had a good laugh.

I still stand by my recommendation to not ask for any pain medication by name, including cannabis-based products. Years ago one pain medicine doc nearly fall out of her chair when I asked her if I might benefit from legal medical marijuana. She said "Absolutely not." Years later I'm using legal mmj for pain control and when each doctor opens up my profile I can almost sense the exact time they see "medical marijuana" on my remedy list, because their eyes lock onto it and freeze....."meeeeedical mariiiiiijuaaaaana.....hmmmm."

It's just best not to go in there and say "I think I need a Fentanyl patch" or whatever.

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.