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Opioids Causing Concerns, Problems for Chronic Pain Patients
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Robojane
Robojane
Last activity on 20/01/2024 at 22:42
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Hi Katieoxo22
I agree totally with what you say that having a good doctor/patient relationship is vital. Maybe I have been very lucky as my Rheumatologist is brilliant as is my GP. Over the years I have been to a variety of classes and clinics relating to my condition so that I am educated about my treatment/drugs etc. and I can be involved in any decisions made about what I need.
I was diagnosed with Diabetes type 2 about 9 months ago. My GP's practice has us attend a Diabetes clinic every 3 months where we first see a specialist nurse then a doctor who we can talk to about our current condition & treatment or the need to change it. They also arranged that I could attend a Diabetes course so that I could be educated on the causes, dietary advice, treatment & side effects etc.
So maybe I am luckier than others. I do want to know about my treatment etc and do ask and demand (nicely) answers. I keep asking till I get to know what I want or need.
What I have found is the NHS is starting to realise that educating people about their health/conditions could save them a whole lot of money. So I advise anyone to ask their GP what is available.
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Jan C
Katieoxo22
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Katieoxo22
Last activity on 28/02/2021 at 14:22
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Hi Robojane, sounds like you have a good relationship sadly not all patients have that plus many doctors are poor communicators also. Just as an example recently I was told my blood test was "alright" when infact a certain component was 3 times the normal level for a female and still is raised some nine months later.Cannot have a good relationship with doctors that are not telling the whole truth in my case. Exposing the facts does not help either, you just get ostracised I think is the word, sorry but my experience is nothing like yours, in fact I have even been on the other end of a doctors temper too, and ridicule of the pharmacist. I've learn't one big lesson that you only get what the GP wants to give, but live in hope that future services will be like the ones you and many others receive.
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K. Brown
Hileena
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Hileena
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Hi,
I don't have a brilliant relationship with my GP but I do with my surgeon/consultant.
The only thing is it the GP that prescribes the tablets. Consultant has done 2 hip replacements and 1 knee replacement so I don't see him very often
I always ask to be copied into any correspondence do that I know when the consultant writes to the GP at least I find out what he has written which isn't always the same a she tells me. {or doesn't tell me}
One consultant in a letter to the GP said he would like me to be sent to a pain clinic.
I didn't hear from her for a few weeks then then I got in touch with her and asked her about this request??? They aren't any good was her reply. GP's can do as much. The point being that he suggested it and I thought it MIGHT help so was willing to give it a try. I thought she should have sent me. It took a lot of fighting to get her to send me to one. Eventually I sat in the chair and didn't move and I think she realised that she wasn't going to see her next patient if I didn't move so eventually got an appointment.
I'm on MST as well. Put on this by another GP when she was off ill. Long storey but I had problems after my 2nd hip replacement and no one could find a way to ease the pain. I've been on crutches permanently for 3 and a half year. Then shed came back for sick leave and I had to go for a knee replacement. She said we'll take you of the MST in Jan. I'll not put it on your prescription after that.
Another slight row with her. The MST isn't for the knee replacement its for the after effects of the 2nd hip replacement!!!!!! So that's the relationship I have with her and most other people do as well. Its Jan now and its still on the repeat prescription so that's it for a while.
Eileen
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Hileena
Katieoxo22
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Katieoxo22
Last activity on 28/02/2021 at 14:22
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Hi Eileen, seems you have problems like myself with the GPs. I hear others who struggle to get what is best for them. I was referred to a Gym and it flared up my arthritis because the exercises were not tailored to my individual health requirements. I was treated like I was just in need of a weight reduction program.An agreed appointment to discuss my health issues with the hospital never came, just an apology for delay but the appointment never ever turned up. I don't bother argueing anymore I just ignore my health as I told the latest new GP no point in having tests if they are going to deny the result or ignore specialist advice. I am not even afforded alternatives to drugs, like physio for arthritis to strenghthen my muscles, but what the heck I have been in pain since 1990 and taking drugs so why change the habits of the old NHS.
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K. Brown
Robojane
Robojane
Last activity on 20/01/2024 at 22:42
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HI Katieoxo22
The NHS has changed a lot since I was first diagnosed with RA in 1973. Some of it for the good (and maybe some not). For example when I had my first hip replacement in 1977 I was in hospital for almost a month. My friend had the same op last month and came home after 3 days. They have learnt a lot over the the years. The main difference I think apart from getting you out of bed quicker is the physio. When I had mine you had to do your exercises with a physiotherapist twice a day and stayed in bed for a long time. Now they teach you what you need to do beforehand and so after the op you do your exercises at home. They realised that you didn’t need a physio standing over you. This cuts back on costs. Both on the physios and hospital costs also freeing up beds to allow a lot more operations.
You say you need to see the physios to strengthen your muscles. You have been in pain since 1990. Surely over the years you have learnt what exercises you need to do and do not need to have a physio standing over you. Of course it would be great to always have everything we want from our specialists, GPs, physios etc. but I think we all know that the NHS has changed leaving us all needing to take a bit more responsibility for our own health. The knowledge is out there. For example from this very site. By using Carenity you have shown you are willing to share and learn. And there are lots of other sites you can use. We just need the confidence to help ourselves.
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Jan C
Katieoxo22
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Katieoxo22
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Hi Robojane, I already have life long exercises to do at home plus drugs. But some people seem to get regular Physio, wonder how they decide who can DIY and who has to attend physio? I do think I should be afforded things like shoe liners and splints on the NHS for my diagnosed arthritis even if they are only supplied by prescription at GPs on a regular basis. I also feel correct diagnosis should be obtained and recorded before deciding on DIY care, especially as some patients have mental health issues that impair their ability to care for themselves. I also feel that long term chronic illness should be reveiwed once in a while like at least once every five years. We do regular screens for certain cancers but not other illnesses that can deterriorate over time, including COPD which could suddenly become terminal. Not everyone who is retired can afford to buy their own test gadgets, splints or shoe liners, nor private physio come to think of it. I appreciate what the NHS provides me with but the system is far from fair and does not always reflect patients need in my opinion.
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K. Brown
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Hileena
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Hi, Robojane
My point was that my GP was going to take me off the MST. I wasn't put on it for the TKR!!!!! I was put on it for another problem which is still not cured and wont be.
If the GP stops writing prescriptions for it there is nothing I can do about it.
Actually its going to be interesting. I had my 6 week post op TKR appointment {it turned out to be 9 weeks} yesterday. For the first time I didn't see my consultant I saw a registrar. He pointed to my ankles which are swollen. This has been an ongoing thing but no doctor takes any notice when I mention it.
He said you need water tablets for that. Well one other consultant put in a letter to the GP that I needed water tablets. After I got a copy letter and hadn't heard about 2 weeks on I made an appointment to see her. Her reply when I mentioned the water tablets was "Idont believe in those so I'm not prescribing them" This was a long time ago. So this registrar said said the same thing I told him what she had said. He said I'll ask again and put it quite strongly but if she wont prescribe them its up to her. It will be interesting to see her reaction this time.
Katieoxo.......do you ever think of changing GP's? I know I do but we don't have many here. Its a small village. There is only one other one. All the others are in the same surgery that she is in so I don't think that would help
Eileen
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Hileena
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Depends what doc I see dr Franklyn woman doc is patient and very good that's why appointments are late because she is kind and very good. Another dr who is head of opractise is south african(white) and can come across very blunt and scathing sortimes and is always dead n time for appointments which tells you a lot also he will not prescribe things unless your specialist reccomemends it.
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R brown
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Hileena
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Hi,
Your Dr Franklyn sounds like my hospital consultant.. He is very good, takes his time with each patient so no one waiting minds because they know they will get the same treatment. He is a very good doctor/consultant/surgeon
The GP......she is one of the partners but she is a different kettle of fish altogether!!!!
Eileen
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Hileena
Robojane
Robojane
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Apologies to those who are not happy with my responses.
I have had RA since 1973. Over the years due to my husband being in the forces I travelled and saw many doctors but received excellent care which included operations, physio and drug treatment. I settled in Yorkshire in 1982 and since then I attend the Rheumatology Clinic for review every 6 months. (For example my Rheumatologist gave me a cortisone injection in Oct 2016 followed by another in Dec 2016.) I have compulsory blood tests every 3 months because I take Methotrexate. Funnily my GP rang me this morning to remind me I should come in next week for that.
Because of the RA I have had the following operations.
LEFT HIP replaced in 1977. Revision 1987. 2nd Revision 1997. 3rd Revision 2011. Girdlestone (Hip replacement removed) 2012.(This meant a 4 month stay in hospital)
RIGHT HIP replaced 2001.
LEFT KNEE replaced 2004. RIGHT KNEE replaced 2005.
RIGHT ELBOW replaced 1992.Revision 1999. I am reviewed every year by the Orthopaedic surgeons.
2 BRAIN TUMOURS were diagnosed in 2007. Ist Removed that year. 2nd removed 2012. I see the Neurologists for a check up every year.
I also have had variety of smaller ops and a Keyhole Hysterectomy in 1996.
I also see a Urologist once a year because of kidney problems.
DIABETES TYPE 2. Treatment started in May 2016. Attend a clinic every 3 months for blood tests etc. And have a check up with a doctor.
One of the reason I have listed all the above is to let you know what treatment I have had over the years. Of course the NHS isn't perfect and once or twice I was sent home and had to wait for my ops because there was no HDU beds available. But overall I consider myself to be very grateful for the care I have received from the NHS. I don't know how I would have managed if had to pay. Over the years I have been provided with all the medical aids I have needed to look after myself which has included crutches, walking frames and sticks etc. And also aids to help me dress and wash easier and of course cook. Also after my last orthopaedic operation someone visited my home and they arranged that among lots of things that I had an automatic door opener installed and provided me with a powered wheelchair.
The main reason for listing the care I have received is that in no way can I recognise or compare it to the treatment you appear to be receiving from your doctors. I know that the NHS isn't perfect but when I have had a bad flare up with my RA my doctors and specialists have been brilliant regarding the drugs I need and referrals to physio (who even gave me acupuncture once) and of course a wide variety of surgeons. Is it to do with living in Yorkshire? Maybe. Is it to do with my trying to approach them with a positive attitude? Possibly. Is it because they know that I want to know what I can do to help myself? I'm sure it helps.
I know that being ill is terrible and can be depressing and it's hard to keep positive all the time. But when I feel bad I think of those who are worse than me. I love watching the ParaOlympics. What they do is amazing. And I was 21 years old when I took ill so at least I had my younger years (and a bit of a wild youth ha ha ??). All those young children who suffer from Juvenile RA what have they to look forward to. And after reading your experiences I know how lucky I have been. That is what I try to tell myself one day at a time.
I hope you can get better treatment than you are receiving now.
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Jan C
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As a crackdown continues on opioid addiction, people with ailments like rheumatoid arthritis find it more difficult to get the pain medication they need.
September was Rheumatic Disease Awareness Month, and there was also Opioid Awareness Week. Perhaps this was intentional, as these two worlds often intertwine.
Many rheumatoid arthritis (RA) patients are painfully aware of the need for opioids in disease management. However, due to stricter regulations, new legislation, and an ever growing epidemic of opioid abuse, patients with RA and other chronic pain issues are facing more difficulty when it comes to getting the medications they say they need.
Arthritis Today Magazine did a lengthy story in their October 2016 issue featuring the pros and cons of opiates. The article expressed a concern over the growing epidemic of opioid addiction, abuse, and overdose. The article was applauded by some patients and patient advocates on various online forums, while it left others thinking it was too critical and painted a negative portrait of people with chronic pain who rely on painkillers.
The problem, it seems, is that many people do, in fact, misuse these highly addictive drugs. People can start with a legitimate need for painkillers and become physically addicted. This can lead to abuse and even an overdose. It can also lead to desperate people resorting to other, more dangerous options, such as heroin, to feed the addiction, when all they were looking for to begin with was a way to alleviate their ongoing pain. However, not all patients fit into this category. In fact, most chronic pain patients do not.
Opinions on opioids
In an online survey conducted on the Arthritis Ashley Facebook page, 85 percent of respondents said they did not want to regularly use opiates in the first place but felt they had no other option. “When pain becomes unmanageable,” wrote Bethany Mills of Utah, “you do what you can to survive.”
Some people with chronic pain said they feel like they are out of options and are aware of the risks of opioid use, but they would still choose to use the drugs to relieve the disabling pain they deal with on a regular basis. They often are not offered other alternatives to alleviate their pain or other methods have failed to help them. “I have tried almost every way possible to deal with my pain,” wrote Sarah Kocurek. “But there are days the swelling in my hands is so severe that it cripples me, making me nauseous or cry out in pain. And then I have only one option left, my opioid pain medication."
Some doctors prescribe painkillers without first exploring other options like physical therapy or non-opioid painkillers. This can increase a patient’s tolerance, causing them to need higher or more frequent doses. It can also cause hyperalgesia. This condition is a heightened pain sensation, sometimes caused by opioid drugs. Instead of decreasing pain, the opiates can, after high-dose or long-term use, increase levels of pain in some people, causing them to want — or need — even more drugs.
According to the website for the nonprofit Institute for Chronic Pain, this can occur because “the nervous system can become abnormally sensitive to even certain medications used to alleviate pain. That is to say, opioid medications can become the stimuli to which the nervous system becomes abnormally sensitized. It can occur for a number of reasons, but one of them is when the use of opioids, particularly high doses of opioids, occurs over a long period of time.”
New guidelines and restrictions surrounding the prescription process are intended to make opioid use safer for patients. The latest guidelines from the Centers for Disease Control and Prevention (CDC) do note the difficulty of treating chronic pain. According to an abstract published in the Journal of the American Medical Association (JAMA), the CDC notes the importance of the guidelines, stating, “Evidence of long-term efficacy of opioids for chronic pain is limited. Opioid use is associated with serious risks, including opioid use disorder and overdose.”
The CDC notes that doctors need to do a better job of explaining potential side effects to patients, and to really weigh the risks versus the benefits in prescribing this class of drug. According to their guidelines, “Non-opioid therapy is preferred for treatment of chronic pain. Opioids should be used only when benefits for pain and function are expected to outweigh risks.”
The regulations can sometimes make it difficult for patients with chronic pain disorders like RA to get these mediations regularly and in a timely fashion. Aside from the hoops that patients may have to jump through to obtain a legal prescription from their medical doctor, there is also the stigma they face from the general public.
Erasing the stigma
People with chronic pain know the look. The one they sometimes get when they seek treatment or pick up medication. “I’m sick of being labeled as a drug-seeker or treated like an addict every time I head to an emergency room or a pharmacy to manage my pain. Being young and female does not help, and I know other RA patients experience the same feelings,” Mills said.
Kocurek has had similar experiences. "I am one of the youngest patients my rheumatologist has,” she said. “And when I have to go into my 90-day appointments to refill my medications, I am constantly looked down upon. As if I am faking my illness to score a fix. And going to urgent care or the emergency room can be more difficult. You aren't believed. You are all but called a junkie.”
These issues were addressed at a recent Stanford MedX panel that discussed the topic of opioids from both patient and practitioner perspectives. However, Britt Johnson, the patient on the panel who represented the chronic pain community, detailed on her blog that she felt overlooked. Stanford Medical School did tweet out one of Johnson’s quotes from the panel. In it, Johnson said, “Pain is not politically correct. The media tells me that all opioids are all bad. The media forgot about me.”
Johnson’s stance is that the media oversimplification of opioid use and abuse is making it look like all opiate users are abusers or stereotypical addicts. Many times, patients are desperate for relief, access, and recognition. Many times, doctors feel obligated to help their patients feel better and have a better quality of life. Some of these doctors even continue to prescribe opioids to patients after an overdose.
But doctors, lawmakers, police, and politicians are also dedicated to protecting vulnerable populations from becoming addicted to drugs. However, many patients will say that without opioids, their lives are already ruined. “The pain of rheumatoid arthritis and dermatomyositis is crushing, so I use these meds because I have no other option if I want to survive,” Mills told Healthline. “But I do acknowledge that some people might misuse pain pills and that they can sometimes be unsafe.”
Other patients agree that there are pros and cons to both opioid use and opioid regulation. Some cite the fear of being stigmatized or judged as to why they won’t use them. “I am 54 and have had a diagnosis of RA for seven years,” said Marilyn Swallow of California. “I have never taken painkillers regularly, except over-the-counter drugs for RA. I have taken opioids following multiple surgeries, but I don't like the way I feel on them or the stigma attached to the use of opioids.” She continued, “I, however, don't judge others for using opioids, nor do I push my personal experience of choice on others. It's tough when another patient asks what I use for pain, and I explain my experience. I think people automatically go on the defense to justify their use of opioids. It's a fine line to walk.”
Kat Nowlin from Texas was diagnosed with juvenile idiopathic arthritis (JIA) before she was 2 years old. Her JIA has since progressed to a severe form of adult RA. “If I had to say a pro about legislation, it is the fact that there's a crackdown on the illegal nonmedicinal use of opioids,” Nowlin told Healthline. “A con for me would probably be the difficulties of having to get a prescription from the doctor in person each time it needs to be filled. This can delay actually receiving the meds as needed on the schedule for that medication. For me they helped me with the breakthrough pain and took the edge off the major pain. But in the past six months I had to get taken off of them due to a liver enzyme issue.”
What can be done?
Despite the risks of addiction, doctors note there is a need for both the use of opiates and the restrictions surrounding them. At a Stanford MedX panel last month, Dr. Jeanmarie Perrone, professor of emergency medicine at the Hospital of the University of Pennsylvania noted, “I need good pain management to work in the emergency room. We need these drugs. We just need to be conscientious about it.”
Patients don’t disagree with the need for careful prescription and conscientiousness surrounding the prescription of these drugs. “Of course, no decent human being wants other people to become addicted to opioids, or heroin, or to overdose and die,” said Mills. “But, at the same time, we don’t want restricted access to these medications that alleviate our pain, just because of the fear of that happening.”
The fear, however, is rooted in reality. The NHS recently granted $53 million in funding to help address the opioid addiction epidemic. About 2 million Americans have an addiction to prescription opioid pain relievers. The issue that many RA patients have when discussing opioids is that they feel their legitimate need for the drugs is lumped in with those who use and abuse these drugs recreationally. The message that patients want to get out is that many people with chronic pain legitimately need these drugs and are not using them “for fun” or for a quick high.
And patients just want to be heard. At the MedX panel, Johnson said, “I’m sitting here and the discussion about the pain crisis is happening around me … and it could be happening with me. We could be having a real discussion here.”
There may be hope on the horizon. A 2016 study detailed research that could perhaps lead to the “perfect” non-opioid painkiller.