Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

[Skippa]

Hi @MargUK pretty sure that what you are describing is tolerance withdrawal. You can google for more infos.

Don't fret, I'm gonna make a longer post reply but can't find the energy atm, I'll post tomorrow.

The bluelight forum that @Palmer1997 linked to is great for all things opiate/tolerance/withdrawal related, so have a good search on there, some scientific minds also, it's like PR for (sometimes illegal) drugs.

 

[Tunguska]

@MargUK That's quite bad, sorry to hear. I'm not an expert on opioid detox and I haven't been on opioids with long half-lives like suboxone. Someone living in the UK might help you find another clinic (if such thing exists). Otherwise the only resource that I found liberal enough to give any real practical suggestions was: https://opiateaddictionsupport.com/

Serious anxiety and depression is standard even if you taper no matter the opioid. In my experience and in many reports the only things that can make a dent in it during opioid withdrawal are the neuralgia meds: lyrica/pregabalin, gabapentin, phenibut. But if you have a long taper and overuse these you'll switch out your dependency for these instead. I personally felt I had to do cold turkeys which makes the substitutes safer and more effective on the whole, but I'm not suggesting that you do this with suboxone whatsoever. Even if your dose is not very high compared to others.

That's about all the advice I can give, sorry, but I think you need to find suggestions from people specifically who withdrew from long half-life opioids and/or professional.

 

[Sidereal]

FWIW, I noticed nothing from taking ibudilast. Which is unusual for me since I react to everything, mostly negatively.

 

[MargUK]

Hi @MargUK pretty sure that what you are describing is tolerance withdrawal. You can google for more infos.

Don't fret, I'm gonna make a longer post reply but can't find the energy atm, I'll post tomorrow.

The bluelight forum that @Palmer1997 linked to is great for all things opiate/tolerance/withdrawal related, so have a good search on there, some scientific minds also, it's like PR for (sometimes illegal) drugs.

Thanks @Skippa - I found the Bluelight and several other drug forums very helpful when I was trying to decide whether to go on Subutex or not originally. How I wish I'd never touched the stuff! I instinctively knew it was far too strong a drug for my situation - someone said to me it was 'like using a mallet to get rid of a pimple' but I felt backed into a corner at the time.

Thanks for your response - no pressure for the longer one - just when you feel able.

 

[Kenshin]

I gave Tramadol a go, 100mg. At first I was pleasantly surprised to find a reduction of general "muscle" pain, but soon followed a feeling of nausia that lasted hours.

It was more effective than codeine which barely effects me at 100mg, but I would need to find a way to stop the sick feeling if I'm to continue it.

Any sugestions? Antihistamines an hour before dosing?

 

[serusaert]

I gave Tramadol a go, 100mg. At first I was pleasantly surprised to find a reduction of general "muscle" pain, but soon followed a feeling of nausia that lasted hours.

It was more effective than codeine which barely effects me at 100mg, but I would need to find a way to stop the sick feeling if I'm to continue it.

Any sugestions? Antihistamines an hour before dosing?

@Kenshin, i suspect that you might find better results if you split the pill in half and lower the dose to 50 mg. when i take tramadol, i take 50 mg.

due to it's addictive nature, i don't take tramadol too often, and, additionally, it interferes with LDN which works very well for me.

but, when i do take it, i find that tramadol helps for a couple of days - and it doesn't mess with sleep quite as much as clonazepam (which is also addictive).

 

[knackers323]

@Palmer1997 how long and at what dose did you find Ibudilast took to work?

Mine was also delivered hot from the sun. Anyone know if that would have damaged it?

 

[Orthrus]

Thanks for joining and posting your ibudilast experiences, @Palmer1997.

A few people on this forum appear to have tried ibudilast: see:

This post by @ebethc (no benefits observed)
This post by @Wishful (no benefits observed)
This post by @serusaert (60% reduction in neuropathic pain observed at 3 x 10 mg daily)

Looks like the cost of ibudilast on irc.bio is $65 for 1,000 mg. So at a dosage of 30 mg daily, that works out to around $2 a day.

I am interested in this as I have developed some new neuropathy symptoms. But I am wondering about legalities. Is it legal to buy/own/use this? What are my legal risks? Thank you for any info on this.

 

[Hip]

What are my legal risks?

These websites selling "research chemicals" do so on the understanding it is not sold for human use. That makes it legal for them to sell, and legal for you to buy. What you then do with the drug when you get it is your own business.

 

[Orthrus]

These websites selling "research chemicals" do so on the understanding it is not sold for human use. That makes it legal for them to sell, and legal for you to buy. What you then do with the drug when you get it is your own business.

Thank you! The last thing one needs to have is CFS in prison. ;-)

 

[Shakota]

I have fibromyalgia and PEM, and was a practicing RN. I have a combo of drug that works for moderate pain and moderate cognitive problems (what I'd term confusion) on a daily basis for 15 years. I take 2.5mg methadone together with either tizanidine or baclofen (lowest dose). Methadone doesn't not require in increase in dose to work. It energizes me a little and puts pain in the background. Has anti-glutimate actions, as well as opioid receptor. Developed by German engineering.
If I get disoriented (by the pain/fog), I then resort to a little klonopin.

 

[purrsian]

I don't remember if I've actually replied to this post in the past, but I definitely get benefit from ibuprofen plus codeine or paracetamol plus codeine. The dosage is only 8-15mg of codeine, depending on brand.

However, I've had problems with nausea since about September (4 months) and dizziness/sinus-type symptoms for several years. So my doctor wants me to stop taking all ibuprofen and codeine, in case ibuprofen is causing stomach issues and codeine is causing head issues (from withdrawl/rebound effect). I've been without either for 2 weeks and nothing has improved, only been worse due to no meds masking it all.

Has anyone experienced these kinds of symptoms from long term opioid use? I've taken paracetamol plus codeine 10mg today and I feel SO much better. Doctors in Australia are very anti-codeine right now, as legislation has changed requiring you to get a prescription for ANY medication with codeine, no matter how little. I don't want to be taking something if it is exacerbating my problems, but I'm fairly sure my nausea is POTS related, and it helps me function so much.

 

[Wayne]

Has anyone experienced these kinds of symptoms from long term opioid use?

Hi @purrsian,

I take Tylenol 4 (by prescription), which I believe contains 60 mg. codeine. I usually only take 1/4 to 1/6 tablet at a time, and it definitely improves many symptoms, including affecting my psyche in a positive way. I noticed if I take it regularly (daily), I can get into some kind of "rebound" cycle, which makes taking it very problematic.

So I generally take it only 1-2x/week. That keeps the rebound cycle at bay, and also totally eliminates any kind of "craving" I might otherwise begin to experience if I took it daily. I've been doing this for about 2-3 years now, and have not noticed any negative effects.​

 

[purrsian]

Hi @purrsian,

I take Tylenol 4 (by prescription), which I believe contains 60 mg. codeine. I usually only take 1/4 to 1/6 tablet at a time, and it definitely improves many symptoms, including affecting my psyche in a positive way. I noticed if I take it regularly (daily), I can get into some kind of "rebound" cycle, which makes taking it very problematic.

So I generally take it only 1-2x/week. That keeps the rebound cycle at bay, and also totally eliminates any kind of "craving" I might otherwise begin to experience if I took it daily. I've been doing this for about 2-3 years now, and have not noticed any negative effects.​

What kind of symptoms do you have in the rebound cycle? I'm finding it hard to identify if I'm having those types of symptoms, or if it's just sinus related and POTS. My doctor wants me off ibuprofen and codeine for 4 weeks and 2 weeks in, I'm already fed up with being unable to do much due to heavy flu-like feeling and pressure in head.

 

[GypsyGirl]

@purrsian
After a couple years of experimentation, I/my doc discovered that my stomach is really sensitive to acetaminophen/Tynenol. I do much better with a low dose of painkiller (opioid) with no Tylenol - it messed up my stomach a LOT. I take ibuprofen from time to time for headaches/breakthru pain, but the OTC NSAIDS stuff seems to mess with my GI system more than a low dose of painkiller.

Just to be clear - I still had some GI issues that eliminating Tylenol didn't magically fix, but the elimination of Tylenol did help a lot.

As for head issues, Tramadol worked as a painkiller for about a year, but I felt more moody and out of control on it (internally. externally people saw no difference.) and really started to dislike those effects. Otherwise, I don't notice big mood changes/mental state changes on my (again, very small dose) of painkiller, although I'm happier and more focused because my pain is diminished. I don't take it at night, and often halve the doses when able so I haven't built up tolerance (probably also diminishing rebound effects).

 

[Kenshin]

I don't remember if I've actually replied to this post in the past, but I definitely get benefit from ibuprofen plus codeine or paracetamol plus codeine. The dosage is only 8-15mg of codeine, depending on brand.

However, I've had problems with nausea since about September (4 months) and dizziness/sinus-type symptoms for several years. So my doctor wants me to stop taking all ibuprofen and codeine, in case ibuprofen is causing stomach issues and codeine is causing head issues (from withdrawl/rebound effect). I've been without either for 2 weeks and nothing has improved, only been worse due to no meds masking it all.

Has anyone experienced these kinds of symptoms from long term opioid use? I've taken paracetamol plus codeine 10mg today and I feel SO much better. Doctors in Australia are very anti-codeine right now, as legislation has changed requiring you to get a prescription for ANY medication with codeine, no matter how little. I don't want to be taking something if it is exacerbating my problems, but I'm fairly sure my nausea is POTS related, and it helps me function so much.

10mg is a small amount, I wouldn't worry about addiction at that amount, but I need 90mg or more to feel codeine.
I've taken around 100mg daily for 2 weeks and didn't get any withdrawels when I stopped.
I don't know if this is normal?

I get very little side effects from codeine but do not like tramadol, which causes nausia and foggy head.
Codeine actually clears my head.

 

[Shakota]

I don't remember if I've actually replied to this post in the past, but I definitely get benefit from ibuprofen plus codeine or paracetamol plus codeine. The dosage is only 8-15mg of codeine, depending on brand.

However, I've had problems with nausea since about September (4 months) and dizziness/sinus-type symptoms for several years. So my doctor wants me to stop taking all ibuprofen and codeine, in case ibuprofen is causing stomach issues and codeine is causing head issues (from withdrawl/rebound effect). I've been without either for 2 weeks and nothing has improved, only been worse due to no meds masking it all.

Has anyone experienced these kinds of symptoms from long term opioid use? I've taken paracetamol plus codeine 10mg today and I feel SO much better. Doctors in Australia are very anti-codeine right now, as legislation has changed requiring you to get a prescription for ANY medication with codeine, no matter how little. I don't want to be taking something if it is exacerbating my problems, but I'm fairly sure my nausea is POTS related, and it helps me function so much.

Being a former registered nurse, I would take you off of any ibuprofen as it can cause massive stomach bleeding. Another thing to look at is how much acetominophen (paracetamol) per 24hrs. you're taking. If you drink alcohol or take other meds you need to back off on the 24 hr limit, also.

You mention sinus-type issues. Have you been seen by a specialist? If you have post-nasal drip from untreated sinusitis, you can easily have nausea (I know this firsthand).


I doubt that it's the codeine that's bothering you if you've tolerated it all this time.

 

[Shakota]

And I'm partial to the drug methadone (in very very low dose, such as 1.75mg to 5mg) because it has a dual action, it doesn't make you want to escalate the doseage and doctors are more okay with it because of methadone treatment centers (methadone used for addiction treatment). Also, for me it is quite effective for fibromyalgia pain, and I take it with tizanidine or baclofen and the synergy is good.

 

[Lipac]

Yup. Me too re increased energy/decreased fatigue with Tramadol, Oxycodone and Dilaudid .
It took me from bedridden to doing amazing things.

Once I got IV Dilaudid in the ER for severe gastroenteritis ; the next day I was playing basketball, Rock wall climbing and swimming ALL DAY with my ten year old .

I finally stopped the narcotics after being on Lyrica, and was glad I had no reaction! One less " drug" to be stigmatized with.

I went into remission then a few months later, so even Lyrica was kinda unnecessary.

No one has ever explained the energy boost.
No high.
Just felt normal.

The only other time anything similar occurred was with a course of high dose Prednisone .

 

[GypsyGirl]

Yup. Me too re increased energy/decreased fatigue with Tramadol, Oxycodone and Dilaudid .
It took me from bedridden to doing amazing things.

No one has ever explained the energy boost.
No high.
Just felt normal.

Same. I just feel normal, definitely not high. And bringing down the pain level meant being able to exercise and run errands and give me a semblance of a normal life.

When I asked a doc about the increased energy, he said that being in pain itself might be a big part of fatigue, so once my body wasn't under the stress of being in pain constantly, I'd naturally feel more energetic in a normal way.