Old 05-18-2017, 07:21 PM #1 (permalink)
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Hi there I have been getting treatment for my fibro for about 4 years now . im on 12mg hydromorphone long acting and just recently my dose of 4mg of dilidud has been dropped to 2mg a day. I also go to a pain clinic when needed and get a lidocine and ketamaine infusion when necessary. (sorry about my spelling). I thought everything was ok with my meds until about a month ago my doc said he received notices from the government stating anyone with non malignant pain who he is treating with narcotics have to be weaned off. I understand that it is not his fault but the government just looks at the big picture that people are becoming addicted! this is true but not in my case. The government wouldn't have time to look at each individual case. I have never abused or changed my dose in over 2 years. I take my pain meds to function. I have only dropped the 2mg and I feel off next month im terrified to go from 12mg to 6mg. My life I thought was getting better I struggle with other demons like many others like alcohol been sober 3years now and an eating disorder for over 20 years mental health anxiety ptsd. the one thing that is keeping me sane right now is working out on stationary bike ,this and my pain meds keep my pain level even. I have become more depressed lately so exercise helps this as well. Iam terrified of how iam going to feel coming down to 6mg. Also because of low mood I have put off plans to volunteer now I feel like I cant commit to anything because iam afraid I will always be in pain coming off my meds. its just a vicious cylcle right now feeling scared,feeling shaky dizzy cannot do my exercise so don't eat. I already have a problem with appetite and withdrawl doesn't help I didn't mean for this to be so long im guess im really anxious as well Im wondering if anyone can help me if they have been in the situation with their meds. I feel like im a slave to fibro already and with coming off my meds its going to be hell any help would be appreciated god bless niki
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Old 05-18-2017, 10:21 PM #2 (permalink)
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Default Re: scared

Welcome to the forum.

I can understand your fear on weaning off your meds. You are on a serious load of heavy duty narcotics. What do you take the Ketamine for? It's primary use is anesthesia induction. It's a strong sedation drug. I know it can be used for other purposes but for Fibro? There's is no doubt we live with lots of pain. Some more than others. The problem with long term narcotic use is rebound pain (addiction is a another issue). Perhaps revisit another strategy in managing your pain, anxiety and eating disorder. These challenges along with the daily goal of remaining sober may require antianxiety meds that will help control your symptoms, not mask them somewhat with narcotics and Ketamine. Hopefully the pain clinic can offer different strategies to manage the pain. Have you considered talk therapy? Patients who live with chronic pain along with anxiety and other mental health challenges often benefit from chatting with a professional who can help identify the root of our anxieties.

Strong pain meds certainly help but if you read through the many threads on this forum you will notice the majority of us are not on narcotics. If we do have a script, it's not hydromorphone or diludid, and the med is taken once in a while. This is not to minimize your discomfort. On the contrary, learning healthier ways to manage our pain is the way to go. All of us here are living with life altering FM and or/CF. hang out here and please find encouragement. Who knows, perhaps once you're off the strong meds you may just find your pain better managed with other classes of drugs. Cymbalta, Lyrica, Gabapentin are a few to chat with your Dr about. Heat and cold packs help, exersize helps, numbing ointments etc.

I wish you the best. Please read through the many forums, especially those on different treatments that are working for some.
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Old 05-19-2017, 04:26 AM #3 (permalink)
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Default Re: scared

We dont use these strong meds in UK ..maybe morphine for terminal cancer,,but the others would never be used for fibromyalgia. I do feel sorry if they are helping and no doubt your body will be addicted..so along with all your other issues i can understand why you are scared.

Medicmurphy has good advice....but it is also true for some of us the pain is much more severe than others. DO you have a milder opiod like codeine you could wean down too that would still be legal....or tramadol which i know a few people here take with some success to manage pain.

My fibro i managed with no pain meds for years but now my pain is often unbearable so i understand he wild difference between the levels of pain.

Do read around the forum or ask more questions and i hope this will help you..take good care of yourself.
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Old 05-19-2017, 10:21 AM #4 (permalink)
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Default Re: scared

I truly feel for you.
I also think what others have said here, especially medicmurphy, is very valid. The thing is, even low doses of narcotics not only can but will become addictive in time. Not because you are getting high or something, but because your body simply adapts to the drug and then needs it to function which = addiction.

I think your body is probably addicted to these narcotics, and as difficult as it is probably going to be, you need for your own sake to wean off them. I hope that you use every single possible strategy at your disposal to do this. A therapist may help, or a support group of some kind. Demand that the pain clinic give you alternatives and ways to deal with the weaning off.

Even Tramadol is addictive, I think. I take it, and I am trying to take less of it than I have in the past three years that I have been taking it, because I am afraid that my body is becoming too accustomed to it. So now, instead of taking it every day automatically, I only take it in the morning the days that I am going to work. Other days I wait, and see if I really need it, and sometimes don't take one until late in the day, meaning I only take one instead of three that day. I may still be dependent on it, but at least not as much.

Do your best to get off the narcotics. I think that such heavy drugs should only be used occasionally and only in extreme circumstances. And remember you can come here to vent and get support. We will do our best to be there for you.
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Old 05-19-2017, 11:57 AM #5 (permalink)
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Default Re: scared

I try to do the same sunkacola...try to have days where i only take one dose of cocodamol when i am desperate..other days i take it 3 times daily but i know already it is less effective as our bodies build tolerance quite quickly.

When i first took it for about a week it was magical pain reduction lol if only it stayed like that.

I have had to increase to maximum for a while now and havent had any luck with other forms of medication as an alternative but still loathe putting them into my body..i long for pain relief and so wish there was something for us more severely affected that was effective but not addictive or damaging.
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Old 05-19-2017, 02:03 PM #6 (permalink)
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Default Re: scared

Thank you to those who offered support and advice on my post regarding me coming off my meds. We all have different levels of pain so I guess to some it seems extreme that Iam on narcotics . It was really my last resort I had already been on Cymbalta and gabapentin before the narcotics. I was originally on Percocet and was taking up to 6 tabs a day and was concerned because I was taking too much with no relief then on oxycodone still no relief. I also cannot take tramadol did that for a month which caused ulsers . I was told about 10 years or so ago that I shouldn't be taking anything with acedominaphen (sorry spelling ) because I will be very honest I have tried overdosing many times through my teens and twenties so my liver is at risk. So the only anti-inflammatory I take is advil 400mg. I feel kind of defensive regarding medicmurphy post and I know your just being helpful. I do have a psychiatrist iam 41 now and have been seeing one since I was 17 I have been hosipitized for my eating disorder in the past up to 4 months at a time where I have been re fed and had a lot of therapy. Ive been on ant anxiety meds for years. I guess that when it comes to the pain clinic I should of been more thorough I only go once in awhile usually every 4 to 6 months. The infusion is a slow drip of ketamine and lidocaine which takes up to and hour at a fairly low dose . I hear what your saying about narcotics and them becoming addictive there is no way that my body cant be physically dependant by now. I also tried marijuana not smoking but vapour. I hope im not coming across as defending myself im really anxious right now . I do natural stuff ride stationary bike everyday min 45min. I only take the 1mg of morphine as needed sometimes the exercise is enough to get my body warmed up and feel better. I really appreciate all your comments and support I guess its just feels like I have a plateful of problems and they all revolve around eachother like many of us. like pain and or chronic fatigue=feeling lazy=depression=anxiety=no exercise=anger =no eating=being hard on myself. if I lived in a perfect world I wish I would have never been percribed anything ever. Please understand iam very grateful for everybodys post and encouragement. I just thought that I had to explain myself a little better I seem to do that a lot not very sure of myself I guess. I know things will get easier thank you all for the kind words and suggestions . God Bless
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Old 05-19-2017, 05:32 PM #7 (permalink)
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Dear Marika dimi,

I understand completely in being defensive. You live with chronic pain and now, with Canadian RX change in protocols, you're facing the medication that works for you discontinued. I'd be scared as well. I've lived with FM for close to 27 years. I raised 3 children while dealing with this condition along with working full time as well. A few months ago I was diagnosed with CF, so now I live with a double whammy. I'm finally emerging from a flare that lasted several months that saw be bed bound for the first time. I've always been able to keep myself going but, my condition has morphed. I also battle chronic respiratory problems and pernicious anemia and PTSD. I as well battled serious depression where if it wasn't for my kids I'd have left this world. This was due to a very abusive relationship. I'm telling you this because I'm in a similar boat as you. Thankfully I found the strength to turn my life around.

Regarding my FM journey, I've tried all SSRI, NSRI, Tramadol (caused vomiting, elevated Liver Enzymes), Cymbalta (trying it again), Gabby, Acetominophen (please see Tramadol side affects), Flexeril, blah, blah....Also attended pain clinic but they "kicked me out" because I developed a heart arrhythmia, do the exersize thing which I admit helps. Eventually I hit the wall which sets me back weeks and I have to start all over again.

When I commented on the strong meds you're on, it was not meant to criticize you. I am on Oxycodone and I'm thankful it helps. It never takes my pain completely away. I would think all of us on this forum have not found a treatment that leaves us pain free. I take the Oxy only when seriously needed. I'm able to make my RX last well beyond the prescribed doseage and expiration date. Because of this my Dr will not be cutting me off with the new Narcotic Guidlines changes. It appears you have more pain than I do. Again. I sympathize. Sadly, your Dr feels that you will have to adopt new strategies to manage your pain. You are young, and Fibro isn't terminal hence, to look at the rest of your life on strong narcotics and Ketamine/Lido infusions is a concern when it comes to the medical professionals. I do believe there are Dr's that do not fully understand Fibromyalgia. Which is why we are left with daily unmanaged pain. Even though I have Fibro and understand the toll it takes on us, I do agree with the approach that strong daily narcotics are not the answer. In the end they cause more serious health side affects than the actual medical condition. I'm sorry if this offends you. I don't mean too. With your serious health problems you need a health care team that can help you as a whole.

Please accept my apologies for coming across insensitive. I acknowledge your serious health concerns and your anxiety about your uncertain future regarding pain management.
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Old 05-19-2017, 11:20 PM #8 (permalink)
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Default Re: scared

Please no apoplogy is necessary I have to admit that im all over the place right now with emotions . I just thought that I had to explain myself more im sorry to hear that you have been experiencing horrible flare ups, not nice at all. I don't usually post things an then yesterday I felt so physically worn down and so scared and frustrated. I thought I needed to get this stuff out or my anxiety was going to go through the roof! You are totally right that I need a health team that can help me as a whole but I just don't know where to start. Hard to find any type of doc at all these days. Ive heard that the only kind of doctor that would specialize in fibro, if they believed in it would be a rhemotologist , maybe ill start there. Your a great inspiration working full time with fibro that's great Take care
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Old 05-20-2017, 01:09 AM #9 (permalink)
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Default Re: scared

Marika dimi,

I'm not an inspiration, I had to retire from my EMS job as a critical care paramedic a few years ago. I lost both my parents months apart then my 2 loyal dogs months a part. Because of these emotional traumas taking place close together, my health took a huge dive making it very challenging to hold everything together. My husband is a gem and supported my decision to retire. For awhile I worked part time but as you well know, Fibro is unpredictable, so I was unable to even keep that going. Now I am trying to focus on exersizing and eating a healthy diet. It seems I can only focus on one thing at a time, so currently it's hitting the gym.

Please hang in. Don't give in but keep up the good fight. There is no doubt we lose much from the Fibro....however, let's encourage each other to strongly cling to our self esteem and self worth. We're not lazy. The proof is us waking and fighting each day while remaining sane. The people on this forum also show wonderfully soft supporting qualities. We need each other. You're valuable!!
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Old 05-20-2017, 01:13 AM #10 (permalink)
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Default Re: scared

Marika dimi,

I'm not an inspiration, I had to retire from my EMS job as a critical care paramedic a few years ago. I lost both my parents months apart then my 2 loyal dogs months a part. Because of these emotional traumas my health took a huge dive making it very challenging to hold everything together. My husband is a gem and supported my decision to retire. For awhile I worked part time but as you well know, Fibro is unpredictable, so I was unable to even work part time. Now I am trying to focus on exersizing and eating a healthy diet. It seems I can only focus on one thing at a time, so currently it's hitting the gym.

Please hang in. Don't give in but keep up the good fight. There is no doubt we lose much from the Fibro....however, let's encourage each other to strongly cling to our self esteem and self worth. We're not lazy. The proof is us waking and fighting each day while remaining sane. The people on this forum also show wonderfully soft supporting qualities. We need each other. You're valuable!!

Last edited by medicmurphy : 05-20-2017 at 01:19 AM Reason: Disregard this double post. Tried to delete but do it have the tools to do so
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Old 05-24-2017, 01:52 PM #11 (permalink)
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Default Re: scared

Just want to sympathize with you about the med changes and I completely understand your fears. I tried everything myself and my pain doctor eventually put me on fentanyl for the pain. Long story short I wanted to get off fentanyl because of the stigma and no family doctor would take me as soon as they saw what meds I was on (I still habe to drive 8hrs every 2 months to see my old doctor as I cant find one where I live).

Anyways, I was switched to long acting morphine which didn't help at all and my pain when from 2-4 or so to a constant 8. It was so bad that the only way to escape the pain was suicide and that was on my mind all the time. Thankfully I was able to call a friend and completely broke down which is not something I ever do.

My doctor then put me on hydromorphone and thankfully that has helped manage the pain and my outlook on life is a bit better. I only take what I need so some days I don't take all of them but other days I could probably use more even though I hate having to he on these meds.

I guess I just wanted to share part of my story and let you know I completely understand your fears. Especially when nothing else has ever worked. I really hope things work out for you and wish you the best.

This war on opiods is only hurting the people who really need them and sadly there is going to be a rise is suicides from people who really do need them to live day to day if they get cut off because they don't have cancer (which seems to be the only criteria for the use of opiods now)
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Old 05-24-2017, 09:16 PM #12 (permalink)
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Default Re: scared

Marika dimi, I really feel for you in this situation. The anxiety of having something taken away that you have come to rely on must be terrible. If it was your decision, that's one thing, but when the government decides, well...it's really hard to accept. I have read this thread and felt I'm out of my depth here because I am only fairly recently diagnosed with fibromyalgia and haven't tried any of the suggested medications because of fear of side effects and addiction. I have been in a lot of pain though for over ten years and it has crippled my life....so I've missed out on so much because of these fears. So, in a sense, it's the opposite situation. What has helped me the most is being understood and validated by the kind people on this forum....the ones who have responded to you are all very different in their approaches but all of them are caring and kind individuals.
Your pain however must be addressed to alleviate the fear. I think you have a good understanding of the drugs and the fact that they don't take the pain away more than momentarily anyway. I know you felt your current regime was helping but it was never going to be a long term solution for you. Permanent effective pain relief doesn't exist it seems so the only realistic view seems to be minimisation of pain and acceptance. Wean off them very slowly.....I mean very, very slowly. Be kind to your body and eat a nutritious diet which actually helps with pain. Go easy on the bike or your knees will pack up like mine did. My two cents worth....I don't think doctors and pain clinics are the answer for you.... they forget about you the minute you walk out the door. Listen to the people who suffer the same things as you do. Take back control of your illness and use doctors only when you really have to. Others might disagree but from what I have read, they have let you down by over prescribing in the first place.
You seem like a really nice person and I hope to hear your contributions on this forum as time goes by. Best wishes.
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Old 05-30-2017, 01:11 PM #13 (permalink)
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Default Re: scared

As much as the fentanyl overdose crisis is serious and scary, and opioid addiction is a very real problem, forcing patients to cut back on a medication that is helping them is... well. Who should I write a letter to? Was this a federal or provincial decision? There has to be a way for doctors to intervene on behalf of their patients, at least to figure out a way to reduce dependence without causing undue harm along the way.

I'm recently diagnosed and my pain is still manageable. However, I did take some percocet when the pain was so bad that I couldn't sleep. I got the prescription when I had a stabbing pain in my side a couple years ago (thought it was kidney stones, turned out to be a pulled muscle), but while they killed the pain they also knocked me out. When my fibromyalgia ramped up this spring, I would take half a tablet to knock myself out. I made 8 tablets last for months, but now I'm out and hesitant to ask my doctor to prescribe another opioid. I'm not too afraid of addiction, given that I can't seem to function properly when I take them, but at least to be used when my pain is really bad.

In any case, I am so sorry for what you're going through Marika, and we are here to support you. Weaning off slightly is probably not a bad thing in the long run, but there has to be a way to do it that doesn't cause so much pain in the meantime. There does seem to be a huge lack of specialists dealing with Fibro, though a friend of mine (also recently diagnosed) says she is seeing someone next month. Surely in Toronto there has to be a few doctors who know what they're doing, but it's so hard to navigate the system if you don't know where to go.
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Old 05-30-2017, 11:39 PM #14 (permalink)
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Default Re: scared

I've actually read the new 2017 guidelines and there is nothing in there that requires a doctor to stop treating non-cancer pain with opiods when all other options have failed. I'd talk to your doctor and print out the guidelines and show him that he is incorrect and that treatment with opiods is still a valid course of action.

Here is the link to the pdf so you can read it yourself.

http://nationalpaincentre.mcmaster.c..._01may2017.pdf

Best of luck to you. If everything else hasn't worked for you then make sure to fight for your rights. If you haven't tried already ive noticed a decent improvement in my symptoms using vitamin D3, B12, Magnesium, and Ginseng. It's helped more than any antidepressants, anticonvulsants and the other crap they try first. It's helped enough that I should be able to lower my opiod doses next time I see my doc which is great.
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Old 06-12-2017, 05:49 PM #15 (permalink)
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Default Re: scared

Here is something to remember, also.
when you are addicted to a pain killer, and you cut down on it, the pain and general malaise that you will feel is in part a withdrawal symptom. So, if you can tough it out for a week or a month, depending on how addicted you are, that will ease up.

Not saying you won't still need something for pain, we all do here. But just that the initial pain you will feel when you cut down on or go off an addictive drug is not the pain level that it will stay at forever. It's just something you have to get through.

Then, you can asses what the pain level is after you have cleared the addiction, and try something else.

I believe that these drugs we take are almost all addictive, even at low levels. But the more you take the worse the addiction will be and the worse it will affect you when you eventually have to go off the drug before it kills you.

I am not a medical professional, just someone who has a little experience with addictions, and this in only my opinion.
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