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

[Skippa]

I've heard good things about CalmSupport, a mix of herbs and nutrients that help with opiate withdrawal. I also know someone who used suboxone to withdraw from opiates successfully with almost no distress.

@Skippa

And isn't marijuana supposed to help too?

Thanks v much, yeah I'm going to talk to doc about suboxone etc.

I can't touch marijuana unfortunately a single puff turns me paranoid.

 

[panckage]

@Skippa ibogaine looks like a very interesting way to get rid of opiate withdrawal/tolerance. Problem is that you need medical supervision to get it done and it may not even be legal where you live.
https://www.newscientist.com/articl...ltering-drug-could-offer-life-free-of-heroin/


Using kratom and Loperamide also seems to be common these days to ween oneself off of opiods. Gabapentin is supposed to be helpful as well. Not sure which one u are trying to get off though? Anyways the drug forums will have much more info on these

 

[Skippa]

Yeah loperamide works wonders. Kratom is no longer available in the UK, but when I used it last year it mashed my stomach up a treat, not a fun experience.

No help from the doc, gave me the name of addiction services in the UK to contact. When I look at their website it talks about making lifestyle changes and helping to find solutions to life problems... Not good I can see where this will go with CFS... All I want is to taper and stop not to do therapy for something they can't touch (me/cfs).

 

[panckage]

That sucks @Skippa. Doctors are trusted to create the mess, but then once they do well you are addicted so they can't help you anymore

I hope doctors will start to get training on these sorts of things!

 

[Skippa]

That sucks @Skippa. Doctors are trusted to create the mess, but then once they do well you are addicted so they can't help you anymore

I hope doctors will start to get training on these sorts of things!

I agree although in this case it's all my own doing, started with OTC codeine and progressed to poppies.

I'm not just addicted to the substance now, I'm addicted to living a near normal life, which will be so hard to say goodbye to

 

[panckage]

I'm not just addicted to the substance now, I'm addicted to living a near normal life, which will be so hard to say goodbye to

If its helping you so much why are you quitting then? Tramadol helped a lot daily for a month or 2 but then I think it killed my emotions(?) so I quit cold turkey. Nowadays I do an opiod every 3rd day which is sustainable. No negative effects at all

 

[Skippa]

If its helping you so much why are you quitting then? Tramadol helped a lot daily for a month or 2 but then I think it killed my emotions(?) so I quit cold turkey. Nowadays I do an opiod every 3rd day which is sustainable. No negative effects at all

Constipation, prostate troubles, strange heart attack like sensations (maybe stomach irritation 'cos ECG came up clean), totally asexual, tolerance withdrawal but refusal to up the dose, and these rashes I've been having seem to be related to me upping my dose the last time - the histamine release is just getting too high

 

[SueJohnPat]

Glad I found this thread. I was on fentanyl patches at one point for severe fibromyalgia pain. I too Celebrex and valtrex and after 6 months was off opiates. But.... Despite being Pain free had horrible diarrhea . Still have had pem after exertion.

At first I thought it was just withdrawal. But after 1 year still there. Also had a cough from hell . The cough , had a full work up no cause could be found, also had colonoscopy. All test totally normal. ( opiates suptress cough so this makes sense.

I did have a temporary 2week remission after rifaximin. But went back to baseline been though supplementing heavily with potent probiotics. ( which I continue to do)

Started Ldn about 6 months ago , seems to have no effect but am still using. Cough lasted from November 2015 until March 2016. I got hydrocodone ( Vicodin) from my pain management Doctor which I was using for the cough.
I tried everything for cough , only hydrocodone worked. ( opiates are great cough suppressants)

I find if I do not take a very small amount ( hydrocodone 2.5mg ) once a day in the morning I have diarrhea all day pain loose stools even if I take immodium, I feel like crap. The very low dose opiate once a day makes me feel normal. The effect lasts all day . There have been a few days were I felt well that I forgot to take it. But only last a day , then diarrhea and feel spaced out, tiny opiate ( very small dose!) then I feel like myself. Weird.

I became ill at age 45. Was a community pharmacist surrounded by drugs , never had any kind of temptation to take anything . I am glad to read about the beta endorphin information. Feel I would just seem to be a drug seeker by doctors.

Since I no longer have severe pain see no point in continuing with pain management. I am going to my family doctor next week. She told me she would cover me for pain .

 

[Mariah]

Don`t have the cognitive energy to read all of this, but I get this relief from Tramadol which is just an opiate-like substance. It lasts for about a day after I`ve taken it too. I`m gonna see my GP in a week and ask for a longer-acting version of this to take every day as it also helps alot with pain, both muscular and neurological. The only thing that gets worse is my vertigo and visual snow, don`t know why it works on pain, pem, sleep etc. and makes those two things worse. But I can live with that when the effect is as good as it is, and besides, it calms me so I`m not plagued as much by the vertigo as I usually am.

 

[hellytheelephant]

Hi @Mariah
I also use Tramadol for pain....I don't believe it does help with PEM etc but what it does do is greatly improves the ability to cope with those symptoms. That fuzzy relaxed 'high' or feeling of well being is what makes people buy the stuff from dealers for recreational purposes. It also affects my vision and spacial sense.and ability to make decisions. For me after tramadol it is as if I have had a few drinks on an empty stomach.

I would caution against using it daily.

After using for a while, you become tolerant to the dose and will need to take a higher dose to get the same result -potentially you can end up using A LOT.

Secondly, if you take it all the time your body will crave it when you don't take it. I came off it completely, which was no picinic, did a year with no pain relief ( also a horrible experience!)....and after trying many other medications, I am back taking it with a great deal of care and GP input.It is what I take when I am having a really bad day... not every day or every other day.

I did ask my GP for timed-release Tramadol and was told it was too expensive.

 

[Mariah]

@hellytheelephant Thanks for the advice, but still think I`m gonna try it! I have excruciating pain every day now, and need some stable pain relief medication. I`ve talked with a couple of people who manage fine on this regimen. I do know about the dangers and the side effects, but those are less important now that I`m in this kind of need. I am in Norway, so don`t think it will be expensive. We pay for the medication we need up to a certain point, then we get the rest for free paid by the state. Never once has my GP mentioned anything about cost before prescribing me anything, so I think it may be a little bit different here and there?

 

[Gingergrrl]

The very low dose opiate once a day makes me feel normal.

For me, a very low dose opiate allows me to breathe better without gasping for air or getting chest pain/angina type pain. It allows me to take a shower with my shower chair, transfer from wheelchair to table, etc. Without it, just standing to transfer from wheelchair to table, I would be so out of breath, I could not eat for about 30 min which it took me to recover. My doctor endorses taking the low dose and feels I deserve to have some relief for this breathing problem. It is prescribed for severe menstrual cramps (and for those I need to take a higher dose) but for daily breathing, I take a tiny, micro dose. I've read everything I can find from Mayo, American Thoracic Society, etc, and everything says that opiates are one of the major treatments for dyspnea but no one really understands why!

I became ill at age 45. Was a community pharmacist surrounded by drugs, never had any kind of temptation to take anything .

I became ill at age 42 and severely ill at age 43/44. I also worked in a hospital for many years and never once had the temptation to take anything. It never even crossed my mind.

Never once has my GP mentioned anything about cost before prescribing me anything, so I think it may be a little bit different here and there?

God, I wish that was the case here! Every discussion re: a potential med always involves the cost and many things are ruled out for this reason alone.

 

[Mariah]

@Gingergrrl That sounds very stressfull in addition to everything else. Here, if the doctor feels that you need a medication, he writes a so called "blue" prescription. The doctor decides this alone. You pay a small fee every time you buy a medication with a blue prescription. When you have reached about 200-250 dollars in sum, you get both doctor appointments and the medication you need for free. Despite everything I do feel lucky that I don`t have to worry about cost in regards to my health. (If you want to try something experimental that has yet to be approved, like Rituxan, you must of course pay everything yourself).

 

[Gingergrrl]

@Gingergrrl That sounds very stressfull in addition to everything else. Here, if the doctor feels that you need a medication, he writes a so called "blue" prescription. The doctor decides this alone. You pay a small fee every time you buy a medication with a blue prescription. When you have reached about 200-250 dollars in sum, you get both doctor appointments and the medication you need for free.

Absolutely nothing like this exists here and one prescription alone could cost more than $250. The insurance (sadly) doesn't give a crap about what the doctor might think. But there are multiple levels of appeals and if you advocate enough, you can often win. It is just a waste of time and energy and it can apply to anything (ER visits, hospital visits, medical tests, etc, and not just meds). But this is another topic and I apologize for the rant. I think it is b/c of a letter that I just got denying my recent ER visit which I will be appealing.

 

[Mariah]

Absolutely nothing like this exists here and one prescription alone could cost more than $250. The insurance (sadly) doesn't give a crap about what the doctor might think. But there are multiple levels of appeals and if you advocate enough, you can often win. It is just a waste of time and energy and it can apply to anything (ER visits, hospital visits, medical tests, etc, and not just meds). But this is another topic and I apologize for the rant. I think it is b/c of a letter that I just got denying my recent ER visit which I will be appealing.

Wow, that is an insult to sick people. That it would cost you anything to go to the ER, or that an insurance company would decide on whether you have to pay for that or not, sounds horrendous to me, I understand your rant, hehe. That must take a hell of a lot of energy arguing and appealing. I`m very happy that hospital stays and ER visits are completely free no matter what here (we of course pay our taxes though), and that we have the system that we have in regards to GPs and medication. Not trying to sound arrogant or anything, I`m sure you have things that are better over there in regards to other stuff.

 

[panckage]

I get this relief from Tramadol which is just an opiate-like substance

I found tramadol to work really well too. I switched to kratom as it gave the same effect. Kratom is superior in that I can take it 2 out of every 3 days without tolerance/withdrawal issues. I take it concurrently with LDN and have no issues. I don't believe that is possible with tramadol

 

[SueJohnPat]

It makes complete sense to me that a low dose opiate ( codiene or tramadol) would help air hunger. (Since it inhibits the " cough reflex"

I have had a few " frustrating" E.R. Visits myself. My bp was 180/90 ( clinic sent me to ER) and the Dr said I had anxiety and gave me a shot of Ativan. I was coughing uncontrollably. I took my husband blood pressure medication when I got home, the next day my bp was normal. I take a beta blocker daily now. I have a prescription for clonazepam at home. ER did not even give me anything to bring my bp down! Ugh!

I am all for treating symptoms aggressively to lessen the great suffering with this illness.

I have been improving doing mold avoidance and cholestyramine. I originally got it ( cholestyramine for diarrhea) have been improving. I am sleeping outside.

Don't need the tramadol to function anymore. ( for now) but since this illness goes on for years I think anything you can do to make yourself comfortable is justified. I also think if you are physically in pain or very uncomfortable for extended periods of time it will cause the illness to get worse due to all the stress on your body.

I hate the blanket recommendations , hysteria by media, dea ect. . The drug overdoses are tragic ( but the numbers are no where near smoking and alcohol related deaths. ) however why should millions of us who need " controlled" substances to have any quality of life suffer needlessly and be stigmatized.

 

[flybro]

tramadol here too. GP told me i had to take 1 4 times a day, and that i have to do it for at least a week.

I felt as high as a kite, no functional capacity at all, but i was comfortable for the 1st time in many years.

now i take between 6 and in emergencies 8 a day.

They are a life saver for me.

 

[Mariah]

@flybro If you take this many (which I do too every day now), have you considered changing to the longer acting ones with a little higher dose each (they come in 100 mg, 150 mg and 200 mg)? This is what I'll ask my doctor about next appointment, I've spoken with a couple of people who say they can take less with the longer acting ones and take them every day. I need something more consistant now, and as @SueJohnPat points out, anything is really justified in this situation with extreme pain.

 

[flybro]

@Mariah because i have so many probs(side-effects) with meds, I'm loathed to change what does help.

my mainstays are tramadol, amitriptyline2x10mg, and Q10 . Aspirin for flu flare, and prednisone for unavoidable flares, ie family/medical/dental interactions. All of which seems to help with pain.

I