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

[Mariah]

Understand @flybro. I will have to change it because at the rate that I am taking it now, one pack of Tramadol á 100 pills only lasts about 14-20 days. Tired of asking for new prescriptions all the time.

 

[flybro]

120 for me using 6 a day for 20 days.



that's my normal very well paced life, 'doses', which is fairly sedentary.

more activities, (physical and/or social) = more meds, which equals more side effects.

 

[Mariah]

I`ve noticed lately that allthough Tramadol is great for many of my symptoms, it affects my vertigo and my visual disturbances negatively. I have had chronic nautical vertigo (like Laura Hillenbrand) and chronic visual snow and "flies" in the visual field since the day I got sick. I also see a "negative" of the thing I`m looking at when I look away. These things all get worse with Tramadol, like a PEM from the drug that starts the day after I`ve taken it. And the worsening seems to linger and not go away. Starting to wonder if this is all in my head, and that I`m just imagening it as I can`t find any reason as to why just these two symptoms are affected negatively.

 

[nokmax76]

@Mariah: One of the more medically-knowledgeable posters will probably be able to tell you exactly what's going on but I just wanted to reassure you that it's not in your head. PWC are supremely sensitive to neurological disturbance even though there often seems to be no logical connection between cause and effect. I suffer from floaters and wobbly vision whenever I turn my head quickly. Both symptoms get worse whenever I change prescription for my glasses or take co-codamol tablets for pain (I didn't get any side-effects from this for the first six months of taking it) or (how's this for random) have a lot of Soy sauce in my food. Stress obviously doesn't help either - which is why the least I can do is post and tell you not to get stressed about thinking you're imagining things

About ten years ago, I was going through a bereavement and having to man up and deal with the Will and Probate despite brain fog. I got severely blurred vision even though the glasses I was using then were only two month-olds at the time. In the early undiagnosed days (I've had chronic for over thirty years now) I used to panic over every new symptom often making them worse. This time though, I didn't sweat it, got through the will dealings and my sight gradually returned to normal.

I hope your symptoms return to normal eventually Mariah and that the benefits you get from Tramadol outweigh the side-effects.

 

[Sidereal]

I`ve noticed lately that allthough Tramadol is great for many of my symptoms, it affects my vertigo and my visual disturbances negatively. I have had chronic nautical vertigo (like Laura Hillenbrand) and chronic visual snow and "flies" in the visual field since the day I got sick. I also see a "negative" of the thing I`m looking at when I look away. These things all get worse with Tramadol, like a PEM from the drug that starts the day after I`ve taken it. And the worsening seems to linger and not go away. Starting to wonder if this is all in my head, and that I`m just imagening it as I can`t find any reason as to why just these two symptoms are affected negatively.

Definitely not in your head. When I take any kind of an opiate I get vertigo and my eyesight gets worse - more blurry, more floaters, visual snow etc.

I used to have vertigo most of the time when I was more severely ill than now and it was an absolute nightmare. A year or so ago I got rid of this symptom by going on a very low fat diet. After just three days of eating nothing but potatoes (no oil, butter or any kind of condiments - just plain potatoes) it started to disappear and if I recall correctly it cleared up completely after about a week. If I tried to reintroduce fat into my diet like say eat an avocado, the symptom came back right away. I know it sounds crazy but it's true. The worst triggers for me seem to be fats (especially polyunsaturated fats such as nuts/seeds) and excessive sodium intake.

 

[Mariah]

@nokmax76 Thanks for the input! Do you mind telling me what pwc stands for? Seems to have escaped me. I really don't want to go off Tramadol as it works so incredibly well for at whole host of symptoms. But this effect on the vertigo is really taking it's toll, and is so extreme now that it is difficult to live with, giving me both anxiety and depression. And when I get a worsening of symptoms they tend to stay worse. You could say I have a progressive version of this disease. Guess I'll have to figure out what is more important. Really wish the side effects were anything but this!

@Sidereal Even though I don't wish this hellish vertigo symptom on anyone, it is good to know that people can relate. I've had vertigo (being on a boat/feeling weightless) for almost nine years now. Can't remember the world when it stood still. And it only gets worse along with the visual disturbances. I've heard people suggest a low sodium diet before, but I also have POTS-symptoms and would think that that would crash so I've been afraid to try. I'm also severly ill right now, and big part of it is the extreme vertigo, and I don't know if I have the energy to read up on a new diet as I imagine it is difficult to avoid salt and fat completely . But I think I would do anything to just lessen this symptom. It truly makes my life extremely difficult to live, and it is depressing to feel it progressing.

 

[nokmax76]

Hi Mariah. PWC is (I think) People With Chronic. I say "I think" because I can never be sure with the damn brain fog. But that's what I take it to mean. Sorry to hear the hold the vertigo has on your life and that you have the progressive type of ME. Like most, my ME has generally got worse over time but some of symptoms do rebound if I give them time and with seasonal changes. It is a huge fear of mine that the more exotic and disabling symptoms will worsen, and like you, I'll get stuck in that vicious circle of anxiety and depression over the worsening symptoms making the symptoms.... even worse. So I empathise with the rock and hard place situation you find yourself in. I don't know what else to say really, except that I wish you all the best.

 

[Skippa]

@Mariah @nokmax76 here is a glossary of terms:

http://forums.phoenixrising.me/index.php?threads/acronyms.11510/#post-293102

 

[Mariah]

Thanks @nokmax76 ! I also have some symptoms that vary a lot, like pain and level of exhaustion. But generally, my disease is declining year by year, even week by week sometimes. And it`s really disheartening that the worst symptoms that are hardest to live with, like vertigo and visual disturbances, are the ones that worsens the most and worst. I recognize your fear, and empathize back! I`m on a path trying to get my depression and anxiety under control with the help of my doctor and a psychiatric nurse who comes to my home every other week, and gain back hope of a better future. I tried Rituxan and it didn`t work. Think that`s what`s spiralled me downwards psychologically the most, even though I know there is more research going on than ever and that there likely will be many more drugs to try in the future. It`s hard to think anything more than "I will never get better and no drug will work on me" when you`re in a deep, dark hole.

Thanks @Skippa, that`s really helpful!

 

[TrixieStix]

Good point about the tolerance issue. I haven't taken the meds long enough to make a call on that (well, maybe somewhat). This discussion also got me thinking about symptomatic baseline changes after their use. I said previously that I hadn't noticed any changes in my baseline condition after stopping the meds, which is true, but then I haven't been on them long term.

I'm sure it would be difficult if not impossible to find a doc to prescribe these meds for me/cfs symptoms, even the me/cfs docs. But then most of us have physical pain too. I can get them for arthritis pain. Regardless, I really don't want to be on narcotics long term. Easier said being back at the mild-moderate level of illness. I was willing to do anything when severe.......but really doubt I would have seen this affect then.

I have taken hydrocodone (dilaudid) every 4 hours round the clock for 3 yrs now and I have not built up tolerance or had to increase my dose. After a major surgery I had to up the dose significantly but was able to taper back down easily once the surgery pain had subsided. I was prescribed hydrocodone due to severe brachial plexus nerve damage that causes severe pain in my arms and hands but I do think it also helps with some of my ME/CFS symptoms.

 

[Skippa]

I have taken hydrocodone (dilaudid) every 4 hours round the clock for 3 yrs now and I have not built up tolerance or had to increase my dose. After a major surgery I had to up the dose significantly but was able to taper back down easily once the surgery pain had subsided. I was prescribed hydrocodone due to severe brachial plexus nerve damage that causes severe pain in my arms and hands but I do think it also helps with some of my ME/CFS symptoms.

Hi, have you ever tried to just stop for 3 days or more?

Ps for me opiates DEFO help with ME/CFS symptoms!

 

[TrixieStix]

Hi, have you ever tried to just stop for 3 days or more?

Ps for me opiates DEFO help with ME/CFS symptoms!

Nope I have not. I don't think I could just stop for a few days. Would have to taper off slowly. But I have no desire as my nerve pain is constant and while the hydrocodone does not cure the pain by any means it reduces it to a mostly tolerable level. I lived in constant pain for 13 years told there was nothing wrong with me. Turns out there was and now because doctors missed it (2 extra ribs compressing my brachial plexus) all those years I am left permanently disabled, unable to drive or work. Major surgery to address the problem only stopped it from getting even worse.

 

[SueJohnPat]

@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.

I tried the 24 hour tramadol about 5 years ago when I was in pain management.

The tramadol kept me from getting to sleep and kept me on a " lighter " stage of sleep. The tramadol molecule is altered to allow for a small mu receptor hit but another part can causes my brain to wake up.

Obviously not good for cfs. I told the doctor this , he poo poo'd it. I have to shut my mouth I am just a pharmacist with 23 years of experience so what do I know.

I take have a script now for 1-2 tramadol a day as needed. I never take one past 5 pm or I am up till 4 in the morning. My husband reacts to this the same way.

Just FYI if this happens to you.
Some doctors tell me stuff about drugs sometimes ( I know they are wrong) but they act so sure they are right I go home and look it up and I was right. Ugh!
Not all the time , of coarse, sometimes I am wrong but I if I am not sure I say I am not sure. It is the doctors who are absolutely " certain " about everything that are often the most wrong when I fact check.

I am very lucky I was/ am a pharmacist ,hard to navigate medical information.

Ps I love my GP and have had a few great doctors along the way, but it is no cakewalk.

 

[Mariah]

@SueJohnPat Does the exact opposite for me. Makes me much more sleepy and I sleep longer and fall asleep as soon as my head hits the pillow. But in the beginning of taking Tramadol I experienced what you describe there, problems falling asleep, waking up many times and so on. But this was a side effect that went away after a while for me. Still not taking it 24/7 though. I've found a good regime with taking it every other day ex. 2-3 times a week.

 

[SueJohnPat]

@SueJohnPat Does the exact opposite for me. Makes me much more sleepy and I sleep longer and fall asleep as soon as my head hits the pillow. But in the beginning of taking Tramadol I experienced what you describe there, problems falling asleep, waking up many times and so on. But this was a side effect that went away after a while for me. Still not taking it 24/7 though. I've found a good regime with taking it every other day ex. 2-3 times a we

@SueJohnPat Does the exact opposite for me. Makes me much more sleepy and I sleep longer and fall asleep as soon as my head hits the pillow. But in the beginning of taking Tramadol I experienced what you describe there, problems falling asleep, waking up many times and so on. But this was a side effect that went away after a while for me. Still

 

[hellytheelephant]

I find if I take Tramadol too near bedtime then I can feel very sleepy but actually be very awake.
@SueJohnPat are you able to take Tramadol every day? I find the more often I take it the more tolerant ie. unresponsive to it I become- so therefore I have to take it as infrequently as I can cope with.

 

[SueJohnPat]

I can take it and not take it.

Right now I am in New Jersey .
I have had a cough from hell 2 years in a row starts in October ends in March.

I cough so hard I just wet my pants .

I have had a chest X-ray endoscopy full work up , Nothing works.
At the end dr offered my codiene cough syrup which I did not want because I had a prescription for
Tramadol -It is a very effective cough suppressant .
Taken steroids inhalers strong high dose acid suppressors for months( high dose ppi's betaine , tessalon pearles, etc. )
Read professional literature on coughs.
( I am/ was a pharmacist)

. I have gotten this for 2 winters from October until March. Before that I was on opiates and they probably suppressed it.

Tried everything. I am gone from pain management. I no longer have severe pain ( was on strong opiates for 4 years quit pain management after Pridgen Protochol worked) .


I have the prescription officially for fibromyalgia pain, but I usually take 1 tramadol in the morning for my horrible hacking cough. If I do not I just hack for 3 hours and my husband tells me to take something.

I did not take tramadol for about 3 months , after starting cholestyramine diarrhea went away. Then the cough started.

Sorry for the novel , feel like a drug addict , no one wants this especially with all the reefer madness like " drug " hysteria going around.


Did not need it while I did a " mold sabbatical in Tecopa California, until it rained in the desert.

Dr's will not prescribe cough suppressants much anymore. When I moved to New Jersey( from PA an hour away) 25 years ago . I started coughing full workup. My doctor finally , would just give me a 16 ounce bottle of codeiene cough syrup with a refill or 2 so I cough survive the winter.

The tramadol works fine it does help the cough and helps with my occasional pain , but I never take it after 5pm.

Unlike most CFS patients, I am able to tolerate medications pretty well.
If a medication is bothering me I will just stop it / use something else.
After many years being ill, I have a mini emergency room in my bathroom cabinet.

It is so tough with this illness , if you are
In pain , if tramadol is effective I would take it. If you are worried about tolerance I totally understand.

When I had pain, I could not function and I think it should be aggressively treated.
If you are in pain your body is in a state of stress. Tramadol although an " opiate " it is very mild .

But we are CFS patients. I personally never had any tolerance whatsoever by taking 1 tramadol a day , but I would never presume to know how anyone else will react.



I was in severe pain for about 4 years. I had to resort to fentanyl patches at one point, but never went higher then the lowest dose. Luckily I was " comfortable enough " at low opiate doses and never developed tokerance. I did not want to have to resort to higher doses.

I was lucky enough ( after Celebrex/ Valtrex) combo worked ( org diagnosed with fibromyalgia. )

I did have to taper a bit due to severe diarrhea and cough . Not in pain but liquid diarrhea and constant coughing oh Joy! ( on cholestyramine for diarhea officially but it is working for " mold")

My family doctor assured me she would give my palliative relief ( I asked for tramadol , clonazepam) so I would not have to go to pain management anymore. Dr. Was ok with me but I heard them mocking other patients.
Some people just want drugs I know but I was always trying to find a way to get off them. If I still needed them I would still be on them . This is not a moral failing.


Sooooo. I am able to take tramadol every day.

Whew.
I just did not want to give an impression that I needed my @ fix@ of tramadol daily. Although I do need coffee.

 

[Tunguska]

Wow missed this thread. Can't read through it all but what I see rings home. I went through opioid withdrawal several times last year and decided this year to try harder to find alternatives. But opioids improve about 50% of my issues including 100% of my gut, but I develop full dependence after only 3 days on them (once even from just 2 days), which provides 4 or 5 days of hell (the first time it was so fast I couldn't conceive it was the opioid). I can only take them one day a week at most, but obligations always ask for more...

The only useful thing I discovered is that a quality Progesterone supplement (liquid drops in MCT oil & vit E), a few drops oral and a few topical, maybe 15-30mg total, completely prevents liquid diarrhea from withdrawal. Along with allopregnanolone it's a 5-ht3 antagonist (https://www.ncbi.nlm.nih.gov/pubmed/9731711) though I think it rather just calms the gut in general. I worked better for me than Loperamide. It's not enough to abolish the anxiety though unless you apply upwards of 50-100mg topically at which point you become a vegetable.

Edit: I wrote tolerance but I meant dependence.

 

[SueJohnPat]

In a pinch they (opiates )stop diarrhea but, they will not solve the underlying gut dysbiosis we probably all have. The opiates slow your gut down and it has a bad reaction when you stop the opiate, if you have " ibs" . I was in pain management for four years and without opiates I would have been bedridden at that time.

When I stopped the opiates I was on very low doses . Before I could get help while waiting for a colonoscopy etc. I was using the opiates for diarrhea so I could leave the house. My gi doc is cool and Xiafaxamin just was approved for " ibs" . After treating with Xiafaxamin and high dose probiotics did not need any opiates to control diarrhea.

While our cfs bodies cannot tolerate medications much. I don't think it is true withdrawal as I understand in from a pharmacology perspective. However I am in no way discounting your experience whatsoever. . Tramadol is very mild ( generally considered but I am well aware of people who are very sensitive to medication) but you have experienced this several times . You know your body.

A true withdrawal would occur with long term high dose opiate use. Physical dependence . Even when I was on opiates daily ( fentanyl patch, oxycodine , heavy hitters 2 years ago ,) I had no withdrawal effects other than diarrhea. The. Opiates just masked my ibs issue ( and cough) symptoms.
A lot of us have " gut " issues. After 20 years of diarrhea, while I was on the opiates my " ibs" was masked .

I like your suggestion of the progesterone supplement. And the 5ht3 antagonist.
I have had severe " emotional , anxiety" meltdowns which I have gotten rid of by detoxing mycotoxins.

However I think your formula probably addresses more of the pathophysiology of what is going on ( autonomic / nervous system) then just simply" stopping diarrhea." . My Diarrhea improved greatly after Xiafaxamin treatment and probiotics ( Prescrit- Assist) . I am on cholestyramine which does double duty . Keeps " ibs" at bay while binding mycotoxins.

I did mess up once and took Ldn at too high a dose after having stopped oxycodone. Wow! Horrible. Now I know what detoxing heroin must be like. I realized what was going on and took oxycodone to reverse withdrawal.

I never had any other " withdrawal symptoms " but severe diarrhea , I think the opiates I was taking masked the effect of how bad my ibs was.

Sorry I am long winded. These issues are complex .

I am a strong believer in making yourself as comfortable as possible. Opiates are not the answer BUT, when used in a thoughtful science based intelligent way can relieve suffering .

I was in terrible pain for a year. I listened to doctors , I tried everything. My doctor at the time was a friend of mine who knew me for 2 years very well before I became ill. I asked her for a Percocet script for one a day so I could get out of bed to go to work. She told me she believed in OxyContin for people with" legitimate "pain problems.
I was thinking about smoking marijuana but I was still working as a pharmacist and did not want to resort to illegal drugs.

I went to a rheumatologist she recommended. I am a pharmacist I asked for lyrica or tramadol . I was 45 years old , I worked in a pharmacy. To be honest I was in so much pain I did not want to become tempted to swipe a few Vicodin when I was at work. She coldly ingnored me and wrote me a blood test for a vitamin d draw. This is correct , but offered me nothing. I was an upper middle class health professional , I worked closely with opiates at my fingertips for twenty years. I was not a high risk " addict" type. I went to a pain management doctor who " believed " that fibromyalgia was painful.

I was started on medications which relieved my pain and made my life bearable. I think that if you are in pain , the pain should be treated aggressively. This does not mean just throwing opiates at a problem but maybe using them temporarily until a root cause of the pain can ( if it can ) be found.


Sorry I ranted. I think people are suffering needlessly because of the heroin od issue ( which could be solved if narcan was available to carry.)

 

[Tunguska]

Everything you wrote makes sense. Sorry they give you such trouble. I've had some major disconnects with the profession as well, though I must say I've also had the strange opposite experience of being offered pain med scripts for no strong reason (and declining myself).

As for my withdrawals, these were from moderate doses of tianeptine which is primarily an opioid in the higher-than-standard doses (its other mechanisms are overblown). Essentially it gave me the full acute stage of opioid withdrawal (word-for-word: http://opiateaddictionsupport.com/opiate-withdrawal-timeline-stop-withdrawal/), but without the post-acute stage. Every single time. I could not quite believe it at first. The very worst symptom was full-blown RLS that keeps you awake 24/7 for 3 days (impossible to endure), followed by crippling anxiety (hard, but I've had to manage it before), then diarrhea.