It would seem the pain specialists are anti opiates for fibro. On a recent visit to my doctor he told me a patient had recently been to a private rheumatologist who wanted her to come off of all her pain meds and only take paracetamol!! When I had my consultation with the pain clinic they also suggested coming of tramadol. I told him I like to see them live just one day in our shoes and see how they like it without pain meds.
Anyone else finding this to be the case?
I have recently started wearing a butrans patch and I can honestly say it had changed my life. My pain is nowhere near as bad as it was. My main problem now is chronic constipation.
Oh well, we can't have it all can we?
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Butrans patch is a narcotic pain medicine that may become habit-forming. Misuse or abuse of Butrans patch by placing it in the mouth or chewing, swallowing, injecting, or snorting it can lead to overdose and death. Do NOT use more than the recommended dose, use for longer than prescribed, or use more often than prescribed without checking with your doctor.
Butrans patch may cause severe and sometimes fatal breathing problems. The risk may be greater when you first start this drug or with any increase in dose. Contact your doctor right away if you experience slow, shallow, or difficult breathing.
I do hope the Butrans patch helps with your pain, pls be very careful.
Yes I know all the side affects. I told my doctor I didn't care if it knocked ten years off my life as long as the time I have left is relatively pain free. No use living if you can't enjoy life.
No use living your life if you can't enjoy it??????????????????? that's a bit harsh, what about the people that are wheelchair bound, through no fault of their own or others that have liver and severe kidney damage through talikg these drugs, all they wanted to was live their life and enjoy it to, not end up worse,
My rheumatology specialist told me to come off my oxycodone, I tried for 4 weeks, I could not move for pain, spoke to my GP and told him I would rather have pain relief and have some live than be completely eaten up by pain and be housebound, he agreed so I'm back on oxycodone. I know they are bad for me in the long run, but they really need to come up with an affective solution before removing what little help we get, I went for years in pain and lost my job through it before I eventually gave in and accepted pain relief. wishing you all the best.
I feel the same. I just did a cold turkey on morphine. Lasted about a week. But needed to see if the DMARD was working. On Friday night I found out that it obviously wasn't yet. It can take up to 6 months though. Had a huge flare Friday night. No one at the hospital or out of hours GP would give me any morphine to take home. They said I had to sort that with my GP so I had a choice.
A a weekend in hospital and oramorph which I've only just used for the first time. 5 ml of that killed my pain within 4-5 mins and lasted about 5 hours Really good and far less opioid in the dose. I'm on 60mg MST zomorph x2 daily. That's 120 mg.
zomorph x 4 spoonfuls a day
20mg. Which would you prefer?
The zomorph was great. But they gave me 2 spoonfuls 1 on the Friday night and 1 on Saturday afternoon. Those were great but the rest of the time in agony. They sent me home without any morphine. So the rest of the weekend in agony until I see my GP tomorrow the 28th sept. I think I'll ask for zomorph. It seems to work a lot quicker and lasts about 5 hours AND you're not stoned off your head.
It's funny that you should post this as last week I had my 6 monthly review with my GP. She asked me "how many Co-codamol are you taking a day?" I said "8 the maximum dose". "Have you ever tried to cut back to a smaller dose" she asked. I said "no, as even at that dose, I still have quite a lot of pain". "Maybe you should try and wean yourself off them" said she. At that point I felt like shouting at her to try and live a day with the pain of Fibro, but I was very controlled and just reminded her of how in the last 18 months, of my own accord, I have weaned myself off max doses of Tramadol, and Butrans Patches, all of which she prescribed, and now I'm only taking 30/500 Co-codamol, 2 X 4 times a day, and 50mgs Amitriptyline at night. Why do we have to be treated like drug addicts? And made to feel like this? We have a Chronic Illness, and we should be listened to, and our medication discussed with us in a way that we are not made to feel like we are drug seeking all the time. I have been with this GP for 6yrs and whilst I felt she wasn't terribly up in her knowledge of Fibro, I felt she was at least understanding, and open to suggestions. Maybe she was just having a bad day!
I hope the Butrans Patches continue to help you, and that you can manage to treat the Constipation effectively.
Hi green peace, I'm on the same meds as you slightly lower dose of amitripline. I'm never pain free are you? I'm so uncomfortable. The amitripline help a lot but the cocodamol take the edge off x
I'm never pain free either, but Rheumatologist took great pains in informing me when I saw her that "you'll never be pain free with Fibro, you just have to manage it as best as you can."
I do gentle swimming once or twice a week if I can manage it, in a heated pool, and I find that that helps tremendously. I don't think that the Amitriptyline does a lot for the pain, but it certainly gives me a good sleep.
I honestly don't know how people with a young family, and maybe a job as well, manage. At least it is just me and Hubby now, and I just about manage.
I had an interesting conversation some time back with my GP with me telling him that I would like to cut back on the opiates I'm on (was MST now Zomorph, and Tramadol) We had already had a conversation around the suitability of opiates for the treatment of fibro, and his view was that if it worked for that person, then why change - I had tried as per my pain management team's suggestion to use gabapentin and pregabalin, neither of which worked for me. Anyway, back to the conversation, he is a GP who says things as they are and he asked me why I would want him to cut my meds back knowing that I would be in more pain and that it was his duty as a doctor to help keep me as pain free as he could so thought it a ridiculous idea and drew the comparison to someone coming in with a broken leg and him just giving the person a sticky plaster to mend it.
I don't know if any of the above will make sense as I'm feeling particularly foggy this morning 😳😳😳😳
Had to go to out of hours GP as I had a flare late Friday night and ended up in hospital. He wouldn't prescribe me zomorph because "he didn't know me" and as a result I've spent the weekend in agony. A&E gave me some IV morphine on Friday night after the nurse had forgotten to do it for 3 hours. Then on Saturday I got a couple of spoons of oramorph. Was quite surprised at how good a 5 ml spoonful of that is. He also mentioned GPs have been told to cut the prescription of opiates. Great. A couple of paracetamol. That'll work wonders. By wonders I mean absolutely nothing
Like you say, let them try this pain every day with the odd exception. They haven't got a clue.
Hi I received conflicting advice from the pain clinic, I was told that as I seemed to be managing quite well and doing lots to help myself that I should think of coming off all meds including tramadol, I was gobsmacked. Then on following visits to receive acupuncture and they couldn't get the needles in because the muscle was so knotted and in spasm things changed. I mentioned wanting to reduce my meds and they said why? If they help carry on.
I think it might be a sort of standard thing they say in the pain clinic because of opiates being the type of drug that people can become dependent upon and abused. Very insensitive of your GP though, all should be done to help you with your pain, all types of treatment tried and then whatever works for you that's the way to go, to help to give you some quality of life.
I remember telling my GP that I would try anything or do anything to try and reduce my pain, if he'd have said I should try running around the surgery waiting room naked with a bowl of trifle on my head singing dancing queen I'd have done it!
From my own experience any strong opiates I have tried initially have a moderate effect only to wear off very quickly either needing a higher dose or a different medication. I think after a discussion on here (below) this is quite common, see link to post;
A recent, four year, non-randomized study of opiates in fibromyalgia
discovered that the fibromyalgia patients taking opiates did
not experience significant improvement in pain at the four
year follow-up compared with baseline, and reported
increased depression in the last two years of the study
However I do use Tramadol and have found it to be effective for my pain and as below the reason may be due to the serotonin pathway and our issues with neurotransmitters, serotonin, dopamine & epinephrine.
Tramadol is a novel analgesic with weak agonist activity at the
mu opiate receptor combined with dual serotonin and
norepinephrine reuptake inhibition that may exert antinociceptive
effects within both the ascending and descending
pain pathways. Three controlled studies have evaluated
the efficacy of tramadol in fibromyalgia.
New therapies in fibromyalgia
LM Arnold - Arthritis Res Ther, 2006 - biomedcentral.com
Also it has been discussed that due to the following lack of Opioid receptors, strong Opioids are not effective and have associated risks therefore the minimal benefits are thought not worth the risks.
Decreased Central μ-Opioid Receptor Availability in Fibromyalgia
Daniel J. Clauw et al
The Journal of Neuroscience, 12 September 2007, 27(37): 10000-10006; doi: 10.1523/JNEUROSCI.2849-07.2007
Here is another article about the efficacy of Tramadol, which is the only part of your post I don't understand. I am surprised a Doctor mentioned coming off Tramadol !
Efficacy of Tramadol in Treatment of Pain in Fibromyalgia.
Russell, Jon I.; Kamin, Marc; Bennett, Robert M.; Schnitzer, Thomas J.; Green, Jerry A.; Katz, Warren A.
However, not surprised by the Opioid information as they are not recommended for Fibro although may be prescribed for other conditions someone with Fibro may have. As we are all individuals there may be a complex variety of conditions that may require strong Opioids but not for Fibro symptoms alone.
The only problem I had with tramadol was the standard SNRI side effects brain zaps, spasms etc but combined with an opiate withdrawal as well I found them particularly difficult to stop. I used them 4 weeks they didn't work for me. So I stopped them figuring that after only 4 weeks there wouldn't be any withdrawal effects. Wrong!!!!! It was awful I lasted 24 hours then started taking them. It took a 12 week tapered withdrawal to get off a drug which I had only been using for4 weeks. I will not be taking tramadol again. Ever.
When my old doctor retired about 2 years back a young doctor took his place and the first thing he did was query the pain meds and wanted me off DHC slow release tablets. He did not even like cocodamal and said he was very worried that so many of the retired doctors patients were strong pain killers with codeine in them and other opiads. He had of course just come back from a course on addiction to prescribed pain meds so was firs up to take everyone off them. He later said when he told me I had fibro that all the latest research seemed to lead to the conclusion thastrong Opiads were not the answer to fibro pain and in fact could no more harm than good.
I have osteo as well as other health problems plus the fibro and to be quite honest without pain meds to take the edge of the Pain (even then I am never without pain) life would be unbearable. When I discussed matters with the pain clinic they suggested Butran patches which to be quite honest were far more convenient but did not help the pain any more and started to give me an allergic reaction around the plaster site. In the end I can off these myself because of the irritation. I also came off the DHC Slow release myself and back onto cocodamal with the Pregablin which he had seemed keen to keep me on.
I think that me making the effort to come off two of the drugs he was not happy about showed him that I was not drug seeking and was happy to try his suggestions and his attitude then seemed to change. I am now on cocodamal 300/50, the Pregablin and Ibuprophen for its antiinflammatory properties.
When my hip started zinging I again said J would prefer a none meds approach and would rather have something like physio etc to try and help and some exercises I could do. I said I thought it could be osteo as I had it in my hands and back and the pain felt similar. He said it couldn't be because my hips moved too freely. I told him that when I was in my 20's and had a fall a specialist commented that my hips were more mobile than they would normally expect. Well to cut a !ong story short he had to ask for Xrays as the physio would not see me without and yes I was right I had osteo in both hips! He was rather sheepish after that and could not wait to get me referred to a physio!
I don't want to take drugs that will do me harm but like others here I want to gave some quality of life and if someone said to me you can only live 4 years but it would be pain free or 10 in pain I would opt for the 5 each time. As we have said time and time again this don't have to stand the pain. I think everyone is an individual and what suitone does not suit another and if a certain drug regime suits someone and they are made aware of any risks they should b allowed to stick to that regime or allowed to go back on it if the new meds the doctor prescribes do not work.x
I was going to say exactly the same. I am very concerned when I hear of people with FMS taking such vast amounts of opiates when there is no evidence to suggest they are effective. They are not harmless painkillers.
Even when there is damage, doctors can be concerned and rightly so. I have Rheumatoid Arthritis and there is no arguing with the destruction of some of my joints. My rheum reviewed me earlier this month and acknowledged my pain but said that there's good evidence to show that regular paracetamol is good at managing pain, especially when compared to paracetamol plus codeine. When I've been in hospital post-surgery, I get offered IV paracetamol. It is a good way to manage pain, so I am unsure why people get offended when it is suggested.
i have opiates. My GP, who I trust, says she does not prescribe opiates for FM because of the way it works (or not). I have them for other probs. . For FM I have Duloxetine, Amitriptyline and believe it or not, paracetamol. I gather there are a variety of meds available because they all work in different ways. I think when I first started on opiates the reflief was amazing and for me def. helped the FM too. The problem with them is that if you take them regularly every day they become less and less effective.
I very much hope you can work out some effective ways of keeping pain at manageable levels. Understanding the constipation issue and I recommend prunes!
I sincerely hope that you are feeling as well as you possibly can be today? My Neurologist told me to cut down on opiates and prescribed Pregabalin for me. I have not found the Pregabalin very useful yet and I have been taking them for about 6 months. I will discuss this with them when I see him again.
I want to genuinely wish you all the best of luck.
I've just remembered, the pain clinic wanted me to take 200mgs of slow release tramadol (tramquel ) twice a day instead of 4 individual doses. So they actually contradicted themselves.
i have been using a fentanyl patch for 10 years now for a combo of fibro, 7-8 bulging discs, cervical stenosis, and on and on. i've never changed the dose and my bone density tests have showed no adverse effects from the use of this narcotic. i am still in a great deal of pain due to neck, back, feet issues. i appreciate people being concerned about side effects of narcotics but am hurt that people are so "demanding" that those of us on narcotics need to get off of them. we are all adults with different health issues. i have never taken more than the doctor has prescribed nor ever thought of chewing them or other ideas that would be something a person looking for a high would do. i take the fentanyl patch for pain. no high, no lows just to help with daily on-going rotten pain.
what is a butrans patch? Im very intrigued... ha ha
It's a pain releaver patch that you change every seven days. So far I have nothing but praise for them. I feel like I have some of the old me back and can definitely do more.
I have read this thread with interest. For me, I take different pain meds for different things. For example, I have a butrans patch and Solpadol for pain associated with osteoarthritis in my hips and two slipped discs in my lower back. I take Gapapentin for Fibro related pain. Sometimes the meds work and other times they don't touch it during a flare up.
My pain and I are well acquainted. I know what upsets it, excess sitting down and so forth. Sometimes I have to do things that will cause upset and then I pay the price.
I know that I have to learn to live with my pain. I was on a pain management programme but had to stop going as I am having a flare up at the moment (ironic, I know), had to increase the strength of the patches so my pain and I have fallen out with each other at the moment. I am sure that we will reconcile after repeated trips to the osteopath.
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