Tablet question!: Hi all haven't posted... - Fibromyalgia Acti...

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Tablet question!

Trophygirl profile image
16 Replies

Hi all haven't posted for a while.can anyone tell me if there having there opiate meds took of them?I'm at my wits end don't no what to do! They've took my hydrocodone of me and next to go is oxicodone .I can't survive without medication to much pain,I won't be able to walk.like many other suffers.,I can't make this young pup of a Dr understands how terrible Fibromyalgia is.I'm Broken ! She just say s they are addictive and need to be w e ened off.after 22years of fibromyalgia I know my body better than she does.on top of all that (don't mean to moan) I have osteoporosis ,osteoarthritis,spondlitus,graves ,tmj,and anxiety caused by all the pain there's not much going for me.thankyou for listening to me .

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Trophygirl
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16 Replies
Trophygirl profile image
Trophygirl

Thanks ajay.hope you're ok !

Hi Trophy, I take Co-dydramol because I prefer it but although my GPs were prescribing it, they were only giving me 2 weeks at a time, which drove me mad. I spoke to one of the Partners & she said it was because that was the standard prescription for patients who had had broken bones. She chenage my prescription & I now get a month's supply at a time. In case it makes a difference, I live in Wales!

in reply to

That would be 'changed' !

Blue42 profile image
Blue42

Hi there, I had to come off all my meds because the GP put me on gabapentin and my bladder stopped working. That was about 4 years ago. I had 6 months of unbelievable pain and they had to put me back on a low dose of amitriptyline. I can honestly say that the pain I get now is actually less than when I was on lots of meds. I think the trouble is your body gets used to your pain meds and you end up taking more x

Blue42 profile image
Blue42 in reply to Blue42

Hi, you could always ask to be sent to the pain clinic in your local hospital, they have other tablets the GP hasn't got access to and can also refer you for things like acupuncture and hydrotherapy. Hope this helps xx

Robinstar profile image
Robinstar

Hi Trophgirl your getting the standard treatment ie everybody gets put on nzaids aspirin,then further research is done they find side effect problems then we are all taken off and put on opioids.Opioids have been blamed for numerous problems so we are taken off in a panic.Its your body and you know the pain so ask the side effects of each drug they give you and balance one against the other then tell them you require that drug to get a decent life ,if refused then ask for a second opinion.

Good luck and stand your corner.

Bob

2pods profile image
2pods

I think we are being penalised as a knee jerk reaction to the opioid crisis in the USA.

My own doctor, who is the very man who went gung ho for Pregabalin a few years ago, and has had me on a maximum dose, now asks me if I would like to reduce them.

Because I receive my tablets weekly in <Fibro has robbed me of this word, but you know what I mean>, I don't have all the reordering stuff over the phone.

wissey profile image
wissey

Hi I have Matrifen patches the guidelines for that now is 37mcg I used to be on 75mcg so had to reduce down over 6 months they should let you stay on whatever helps you maybe ask if there is alternative they can't leave you without pain relief

No1wthayla profile image
No1wthayla

If someone took me off my pain meds and other fibro medications, I would be unable to work. I would probably not get out of bed except to use the bathroom and get food deliveries to my apartment. It's hard enough with them to go to work, shop for groceries, cook and clean.

SusieJo1948 profile image
SusieJo1948

Your so right there taking people off opoids.whether there in U.S. Or UK. In the states the cdc --Center for disease control. Got it into there heads that addicts are dieing from the opoids. If a addict every one of them aren't going to worry. They'll go to the streets and drug dealers and get something else and they'll end up dieing. While the rest of us with chronic pain suffer because of a addict. They've took away what little opoids they were giving us. Although the my pain Dr put me on Belbuca it's a lot weaker. They start at 75mcg and I believe up to nine hundred mcg. The paper that comes with it says to tell your Dr if it's not helping and they'll raise it. How many of us can live with this pain with nothing to help. I belie've I can't.I have other serious health problems. Love susiejo1948

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Hi there , sorry to read this, we seem to get the right help with pain meds and then a different doctor will come along and change things, I’m guessing if the doctor is young fresh out of training they will have attended meetings or seminars where the opiate meds will have recently been discussed, reading the responses from members , people are in genuine need for pain relief but unfortunately there are many that get addicted and spoil it for the rest of us. I was actually watching a fictional programme called greys anatomy(American series) part of the story line involved a seminar about this.

DearD profile image
DearD

Hi Trophygirl

My neurologist insisted that I stop co-codamol because he said it doesn't help and wrote to my doctor to instruct him to stop prescribing it.

Fortunately my doctor is very kind and understanding. He basically said how can someone else know what helps or doesn't help your pain - only you know that. He said he was happy that I knew my own body, pain levels and what I could cope with and if co-codamol helps he is happy to prescribe it.

I do try to ration it though because I know it's addictive and I only take 20-30 tablets a month depending on how bad I am. x

Mdaisy profile image
Mdaisy

Hello Trophygirl

I know this doesn't help at all but we've read many posts whereby GPs have been asking their patients to reduce Opioids and High Risk Medications as they've been instructed to do so. As another member highlights it is to try to potentially stop a UK Opioid crisis like the USa but it seems to be affecting people who are in genuine pain. I personally feel that as we also have problems with dismissive HCP, this is playing into their hands and for anyone who is judging us as embellishing symptoms - they are reducing people with invisible illnesses where they can first. This is totally unfair and they have a duty of care to ensure you are as pain free as possible and they are also taught that 'pain is whatever the experiencing person says it is' (McCaffery1968).

I highlighted this issue about 5 years ago and mentioned my concerns and even at the time (now closed) started a petition about this, see post below;

healthunlocked.com/fibromya...

I understand that everyone should have medication reviews as some people may need this to ensure they are not on anything they shouldn't be, but if we are in pain in my opinion we should not be asked to reduced especially as they have nothing to put in it's place to help. If they considered medical cannabis this may be a way to help the millions of people living with chronic pain in the UK and also help any potential Opioid Crisis here.

Do keep fighting to ensure they address your pain properly by either seeing another GP or writing to your Practice Manager with your concerns. I would like to mention that strong opioids are not recommended for Fibro as the little benefit doesn't seem to outweigh the risks, that being said I know that many people with Fibromyalgia cannot tolerate the pain experience without Opioids (catch 22). I am unsure whether you've read the post below with recommendations how to address Fibromyalgia, but linked it here anyway as might be of interest.

EULAR Guidelines for Fibromyalgia below;

healthunlocked.com/fibromya...

You can also ask FMAUK if you haven't done so already to send a medical pack to your GP Surgery, you just need to click the link below and complete the details;

fmauk.org/information-packs...

Hope this helps

Emma :)

Trophygirl profile image
Trophygirl in reply to Mdaisy

Thankyou emma.I don't take my tabs willing hilly.I go as long as I can in pain till I cannot stand it any longer before I take any meds ,I thought I was a sensible adult.how do you explain the pain your enduring to someone who doesn't understand what it's like to suffer 24/7.it's such a cruel affliction it ruins life's !

Mdaisy profile image
Mdaisy in reply to Trophygirl

I understand and I'm sorry you're feeling you are fighting for help for a genuine condition with little empathy from HCP. If they cut funding and therefore there is a for the lack of support for those who are addicted to prescription meds what did they think would happen. Asking GPs to reduce these medications without offering those who are genuinely in need of help with addiction and cutting meds for those are in chronic pain and need them is not the answer. Primary care services are stretched due to lack of funding and there is a wider issue here that needs addressing. I hope you get the help you need to be as pain free as possible :)

TheBigF profile image
TheBigF

Hi honey - sadly, this is how it is now. I'm no longer prescribed thing that work for me as they may be addictive. Plus I no longer get my sleep meds or anxiety meds for same reason. I have to say, yes, it's crap but, I am trying to find other ways to deal with it. Thepain never goes The sleep - well, lets just say my house has never been so clean. It's what I do when I cant sleep. We are being denied our meds because they may encourage some addicts to access them. t's not fair. It leaves us in pain and benefits no-one. Sorry, Trophy Girl, but I don't think it will changexx

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