Wife's in Chronic pain.

[Johnfk]

Wife is bed bound with an ongoing degenerative spine condition which is causing chronic pain. Our doctors will not subscribe the only effective pain killer which is Fentinol Patches. Other patients in our area whom are in less pain are prescribed patches so we feel really upset with Doctors actions. They are the only surgery in our area so we don't want to upset them. Any advicewould be appreciated.X John

[Madlegs1]

Sorry to hear of your troubles.

Who is prescribing fentanyl to the other patients in your area? If it is the only practice?

Will they prescribe other opioids? Such as Oxycontin or Buprenorphin?

[Johnfk in reply to Madlegs1]

Thanks Medleys,My chemist advised me that my practise was subscribing patches for patients from my surgery. I haven't heard of Oxycontin or Buprenorphin ? I can ask them thanks.I thought I was on the strongest pill form ? Tramodol and Naproxin.I know patches work.

[Johnfk in reply to Johnfk]

Madlegs, sorry

[Madlegs1 in reply to Johnfk]

Tramadol is low on the scale of opioids. Above codeine but below Oxycontin.Fentanyl would be top of the pile and is a nasty drug. I know. I was on it post spinal reconstruction. Took me 18 months to get off it from 70 mcgms.

Naproxen is very effective but I don't take it long term as it bungs me up quite severely. It must be taken with a stomach protection which also irritates my restless legs.

[Johnfk in reply to Madlegs1]

Thanks for this, I see you have experienced a difficult and painful time of it. Hope you're bearing up ok. This is my wife's problem, her spine is braking up in the lower lumber area. Ive tried to persuade her to get it fused but she won't. The outcome is that 3 to 5 times a year she experiences a rupture of the spine or whatever. This practically paralyses her with pain for about six weeks before recovering, but this attack has lasted 12 weeks. I am very frustrated with our surgery for not managing her pain competently after 12 weeks. They have now said she can take 3 Tramodol and 3 Naproxen which is a tiny bit better. Shes mentally happier in her looks now instead of a face racked with pain. Daphnes legs are swollen but the doctor didn't know why. I wonder how much more pain she will have to endure before they act appropriately. We are in our 70's so it's hard to press the doctors of today. For her bowls she has 2 Laxido a day and oxiprom ? for digestion. In the beginning she had morphine injection, and then morphine pills ? and then patches which work wonderfully and Daphne was able to stop ok, so that's one good thing if she ever gets any, will let you know. I bought an ultra sound set up, could only use it for 4 min, don't really know if it helps, maybe infra red ? Take care X John

[Madlegs1 in reply to Johnfk]

Thanks.An awful load of pain to have to endure.

What is her objection to fusion? With the amount of discomfort at present ,I would have thought it might be welcome?

All the best.

[Hidden in reply to Madlegs1]

Me being a renal patient, I can say that long term NSAID use such as Naproxen is not good for kidneys. It can cause kidney failure.

[katelee]

I am so sorry to hear about your wife. I am on Fentanyl patches but tbh it was a fight to get them and now to keep them even though they have been life changing for me. The best advice is to keep trying different GPs, which is who prescribed mine, until you find one who will listen and help. It took me a long time to find my GP and it was worth it as she now fights my corner. To help you I would keep a record of your wife symptoms and pain levels (I use a pain scale that you can get online that describes what each number between 1-10 means including that 10 means being unconscious or unable to communicate so if you tell a doctor your pain is a 10 chances are they will think you are exaggerating and I then take the pain scale to all appointments). When her pain is unmanageable contact the GP or hospital as they have to see how bad this is for her. This will probably be an uphill struggle as the medical professionals seems set on taking opiates away from people with chronic pain but a good GP can be life changing. Why was your wife's patches stopped if they were helping? I also cannot help but comment on what you said about other people in less pain having access to them. You have no idea how bad their pain is especially as you will rarely see people when they are in agony, as I am sure is the case for your wife. Other people don't see how bad it is for her but you do. Noone outside my family and close friends have seen the reality of my pain and those who haven't witnessed it don't believe it's severity and that includes my pain team. Also the point of the Fentanyl is to reduce pain so if it's working those on it should have less pain than your wife.

I would keep searching for the right GP/consultant as your wife is entitled to medication that helps her. There are also other slow release opiates that might be more helpful than what she is on.

Ultrasound and infrared can be helpful but it might be useful to see a practitioner who can make sure what you bought is appropriate, and is used correctly. I have also found hydrotherapy to be game changing. The warm water is incredibly soothing and allows you to move about which is good for you but so hard to do when in agony. I also have a chiropractor and osteopath which also helps me manage my symptoms.

I hope your wife and you find some relief soon.

[Johnfk in reply to katelee]

Thank you for your kind reply, and the really good advice will copy and paste for help later. I'm so sorry that you've had similar injury. When booking home visits for physio there is a long waiting list for treatment, so many with bad backs, phew !

with kind regards John

[katelee in reply to Johnfk]

I used a private physio as a one off and my chiropractor uses ultrasound so they both were able to show my how to use it effectively. I know it can be difficult to pay for these things but a couple of sessions could really help. My hydrotherapy is now done privately too. It's even harder now to access proper support and waiting lists have got ridiculous. I have had chronic pain for 20 years and do a little work in pain management so if you have any questions feel free to ask. They cannot find the reason for my pain so it can be incredibly difficult to be taken seriously.

Your wife is lucky to have your support 😊 I wish you both well. Take care Kate

[Konagirl60]

If she requires fentanyl duragesic patches she is truly in a great deal of pain. I wore them for over two years ( 12 mcg ) before I finally got the surgery that saved my life.

I had a pinched nerve in my ischial spine and my Canadian doctors wouldn’t help me get surgery. They kept me on ‘ medication management’ when I needed surgery.

Don’t give up. Can you contact a lawyer, a registered nurse consultant or an Ombudsman? You need to get your wife ‘an advocate’ stat. She should NOT be made to suffer so badly. Keep us posted.

[Beater in reply to Konagirl60]

I'm in Canada too. They will only give me antidepressants which make me suicidal and no pain relief or pregabalin which takes a tiny bit of nerve pain away but I am not tolerating it and can't walk or leave the house alone and to dizzy to use a Walker. Where did you finally find relief?

[Konagirl60 in reply to Beater]

I was left with intractable burning 🔥 pain 24/7 for 19 months. My GP of 21 years and every specialist she sent me to brushed me off. I was abused emotionally and verbally, not examined properly, misdiagnosed on purpose, mistreated and left overly sedated for years without any pain control. 😭

I had a nerve compression injury in my pelvis and the doctors in Vancouver, B.C. said I had cyclothymia. Is losing whole bowel movements without feeling it a symptom of cyclothymia? I don’t think so.

I had to fly in agony to Toronto to get a proper neurological examination. The Ontarian neurologist referred me to the best in Minneapolis, Minnesota.

I’d been unable to sit for 19 months and I was standing up all day on orthopaedic shoes before my legs gave out. I was formally diagnosed with pudendal neuropathy and sent back to Canada with a treatment plan.

My GP DID NOT believe the US specialist and she told me my Pain specialist had dropped me!

I was left neglected and in agony for years. I needed decompression surgery and no B.C. doctor would help me to get it despite saying they would. They all committed fraud and they misrepresented the truth in their consult notes.

I met and hired a registered nurse consultant and she procured my surgery. Within four months of hiring her I was in Minnesota getting the surgery I had needed for the past 4 years! It saved my life.

Call a malpractice lawyer….it’s my biggest regret that I didn’t but I was in so much pain I could no longer think properly. It’s sounds like you’re being gas lighted to. Call your local MLA. Good luck. The doctors are corrupt now.

[Johnfk in reply to Konagirl60]

Thanks, I sent a letter to the Practice Manager of the Surgery quoting the Hypocrite Oath etc and they increased pain killer dosage, so ok now. It was a unnecessary painful lesson for me, grrrr

[Beater in reply to Konagirl60]

Omg! It's pretty much the same story. I'm in Toronto and I had open heart surgery in June 2021 and never recovered. Cardiologist wouldn't see me for 6 months following surgery and wouldn't return gp's calls and she didn't know what to do. I couldn't tolerate the medication and nobody would listen to me. I complained every where to no avail. I complained to Ottawa heart institute and then I got a message on my answering machine from cardiologist saying go off all meds right now. I was 98lbs from 130. I was on a host of meds but beta blockers and benzos need to be tapered unbeknownst to me and I went into instant withdrawal. I have now damaged my CNS and collapsed in the street on my 64th birthday and ended up in hospital and they refused to help me. I laid on a stretcher in a covid hallway with no food, blankets or pillows for 3 days. They offered to send me to ltc where everyone was dying from covid. Then they tried telling me that I was anorexic and wanted to send me to psychiatry. They put me back on benzos and pregabalin and lied in their charts. I finally begged to leave and they were quite happy to see me go. Like you the only time I am not in pain is when I am standing, I actually walk 2 miles a day for my heart and just to get some movement. I have been put on so many bad meds, the shrink was confused about the referral as she stated that it clearly was not a mental health issue and I already have a therapist. It's never ending and I am just so tired now. We bought a cottage for our retirement and this is the 3rd year that it's sitting empty. I'm afraid that I will never see it again. I can't even sit in the car as the seat hurts my back. I don't know where to go from here. I've stayed away from lawyers as I'm afraid that it will make things worse.

[Johnfk in reply to Beater]

Hope you find a manageable solution, sounds like you need one urgently,

With kind regards John

[Beater in reply to Johnfk]

Thank you.

[Konagirl60 in reply to Beater]

I have absolutely no faith in the Canadian health care system. It’s corrupt across the board. I am so sorry.

I honestly think they want people like us to choose MAID instead of helping us. It’s utterly disgusting!

[Beater in reply to Konagirl60]

I've already mentioned MAID to my family Dr. and she started crying. It looks like that's where I am going because I can't live like this anymore.

[Hidden in reply to Konagirl60]

Hello Konagirl60. Your story is just one more that shows how much socialized medicine does not seem to work very well as far as people getting the help and treatment that they need. We have a senator here in the US, Bernie Sanders, that has been trying to push for it for years. I'll admit that in some US citizen's minds, they think our health system stinks but I keep seeing stories on here and other forums from people in the UK and Canada complaining that they can't get the care they need. A lot of people are saying that the NHS is broken. I feel sorry for people because it almost seems like they are prisoners in their own country. It sounds like people are taxed enough to help pay for the national health system but if they want real care, they have to pay even more to go private. I don't know what the answer is but I do know that I can get the care I need anytime I need it. We do have a shortage of GPs or as we call them, primary care doctors. Because of that, new patients will sometimes have to wait months to get their first appointment. Once you get established with a doctors office, it's pretty easy to get another appointment. I'm glad you got help in the US. I'm guessing you went to Mayo Clinic?

[Konagirl60 in reply to Hidden]

No, I didn’t go to the Mayo clinic. I went to be diagnosed by a top notch urologist who sub-specialized in Pudendal neuropathy. His office was in Minneapolis but he performed my decompression surgery in St. Paul.

My surgeon has retired.

[Johnfk in reply to Beater]

Managed to get increase in meds > 3 Tramodel and 3 Naproxen with paracetamol in between to suit, still not enough to live life normally, but was able to have a shower.

with kind regards John

[Mitch48]

Hi there,

I’m sorry that your wife is suffering so.

Maybe the main reason that your wife isn’t prescribed Fentanyl patches is that her pain worst pain is not constant or more regular, you mention that “she has 3 to 5 times a year when her spine ruptures? or whatever? and she is paralysed with pain”. It would be incredibly difficult to titrated a dose of the patches up when her pain suddenly strikes like this & titrate down when it stops. It’s much easier to take an additional tablet or so of something she is already taking than jump from weak Tramadol to the much more powerful Fentanyl (50 to 100 times stronger than Morphine) Oxycodone is 1.5 times stronger than Morphine). There are many different opioids increasing in strength between Tramadol & Fentanyl, including other patches and no doubt a GP would prescribe more of the existing medication to see if that helped rather than jump to something stronger first of all. There is NICE guidance to avoid prescribing opioids as much as possible due to their addictive qualities even when used for chronic pain.

What is she like with pain levels normally, is she more mobile? Do her other drugs help with her pain then?

I have cervical & lumbar spinal injuries from a road traffic collision 19 years ago. I am in constant severe chronic pain affecting almost my entire body and head/face.

I had extensive lumbar surgery (L3/4/5) to stabilise 2 vertebrae that were out of alignment due to severe arthritis (Spondylolisthesis) and to combat Impending Cauda Equina. It was a tough surgery to recover from but worth it as the CE could have left me in an even worse state. I was 51 years old at the time & have been left with further life changing symptoms.

I have been prescribed Fentanyl patches (75 mcgs) for 11/12 years as my spine has deteriorated as each year has gone by and I have severe breakthrough pain taking also Gabapentin 2700 mgs, Duloxetine 120 mgs & Baclofen 50 mgs . I take Oramorph 37.5 mls per dose.

Naproxen stopped working for me recently & so I stopped taking it along with Lansoprazole.

I’m hopefully having Pulsed Radiofrequency Ablation on my lumbar spine to help with pain, I have it on the 2 damaged nerves in my cervical spine (C5/6 & C6/7) & it helps.

How do Pain Clinic treatments help her?

Please let us know how your wife goes on.

Kind Regards,

Mitch

[Johnfk in reply to Mitch48]

Thanks Mitch, for your extensive information. It looks like you've covered the whole issue of spinal problems. I hope you find a manageable cure, you've had a terrible time. Being her carer it affects me seeing her in so much unnecessary pain. They know the patch fentinol dosage as she's had it before, I thought if she joined a pain management clinic they could maybe get the patches for her. Any way we've had to go through six weeks of pain while they slowly increase the levels until it works. I sent a letter to the practice manager quoting the hypocrite oath etc and the doc phoned us and increased meds. So she's now coming out of it now, which is a big relief. This being a particular bad episode I am now worried that her spine is getting worse. So more investigation needed. She should have had surgery when she was younger. Osteoporosis caused her injury which is lack of calcium and the rest of it whilst making baby's. What was your cause Mitch.

With kind regards John

[Hidden in reply to Mitch48]

Wow Mitch, it sounds like you are enduring a lot of pain and are taking quite a few meds. I started seeing a pain management doctor 3 years ago for back pain. I too have all those crazy things you named and I am taking 10 mg of Hydrocodone every day. I also have had two RFA ablations and they helped me. Take care warrior!

[Mitch48 in reply to Hidden]

Hi there,

Thank you for your message of encouragement, it’s reassuring that others are battling the same symptoms that you are experiencing, even though I wouldn’t wish it on another person. I’m glad RFA has helped you and I hope it will continue to do so, we have to endure such pain through having treatments to help us. You sound very positive and I like your closing message, it has inspired me to keep on fighting this. Thank you fellow warrior! Take care too.

Kind regards,

Mitch

[Konagirl60 in reply to Mitch48]

How did the pulsed frequency ablation work? Did you get some relief of pain?

[Mitch48 in reply to Konagirl60]

Hi there,

I’m really sorry for the very late reply as I’ve had a few flare ups in the last month.

I’ve only had the test injections - medial branch block in October but it helped with some symptoms, thank you for asking. I’m on the waiting list for the Radiofrequency & have been told it shouldn’t be too long to wait for the treatment.

How are things with you?

Kind regards,

Mitch

[Konagirl60 in reply to Mitch48]

Nice to hear back from you. I certainly know from experience how a flare up can set us back physically, mentally and emotionally. I get it.

I hope you won’t be left waiting too much longer.

Slowly but surely I’m able to sit for longer periods of time BUT I cannot lie down without having constant throbbing and neurogenic sensations ( pins and needles, pulsating feelings ) in my sacral plexus. I require two meds at bedtime in order to sleep.

I try to walk twice a day for 20-30 minutes. Sometimes my right thigh goes numb but it eventually reverts to normal. When I get up after standing, I feel wobbly but it to goes away.

I focus on being alive and trying to distract myself.

Good luck. Keep in touch.

[Mitch48 in reply to Konagirl60]

Hi there,

Nice to hear from you too. We unfortunately understand each other on this forum. Thank you, I’ve had my pre assessment so fingers crossed.

I’m glad you can sit for longer but lying down is what we need to do to rest & sleep without all the added neuropathies that we have to put up with. I’m hoping the Radiofrequency ablation with help with mine, is that something that you can have done?

You’re doing well with the walking, I wish I could do some outside of my home but my feet & legs symptoms affect me badly after doing so & can flare for days. Hopefully your wobbling may improve as you strengthen your core unless it’s a nerve issue?

Kind Regards,

Mitch

[Konagirl60 in reply to Mitch48]

I don’t want anymore procedures done. I just don’t trust doctors/surgeons anymore.

I’m saving money to get stem cell treatments abroad.

Have you tried turmeric pills for inflammation and juices with fresh turmeric and fresh ginger in them? They help me.

Can you walk with orthopaedic shoes on? They help me to.

Hang in there.

[Mitch48 in reply to Konagirl60]

Hi there,

Best of luck for whenever your stem cell treatment will be.

Unfortunately I cannot take turmeric supplements or fresh turmeric as it reacts adversely with a couple of my meds.

I tend to wear trainers most of the time & I add specialist insoles designed to absorb most of the shock from walking, even so I still aggravate my damaged lumbar nerves just by walking (or sitting), especially outside! I’ve been looking at more natural ways of walking but I need more practice to perfect it.

Thank you & you.

Kind Regards,

Mitch

[Laura333]

Hi, hate to say it, but it’s possibly your wife’s age that’s stopping fentanyl being prescribed. I’m also in my seventies and my GP is very loth to prescribe anything that’s strong enough to help as she says it suppresses breathing. I’m already taking sleeping tablets, due to pain caused by my fused spine. The fusion was years ago, and didn’t help at all. DDD is awful, the level of pain from this and conditions caused by it is hard to control. I’m not good with pain killers, codeine makes me very sick, morphine patches dope me too much. Nothing really helps, even tried medical cannabis, but that didn’t help either. I hope your wife gets over this flare soon.

[Johnfk in reply to Laura333]

Thanks Laura, I spoke to our chemist and there are other similar patients receiving fentinol so she should be ok, I sent a letter to the surgery practice manager and the doc increased meds so she's ok now, she managed a shower today so light at the end of the tunnel, phew.

With kind regards John

[cyberbarn]

I wonder if it would be worth talking to PALS. They can often support patients to be able to access better treatment. You can find your local one here. nhs.uk/nhs-services/hospita...

[Johnfk]

Thanks very much, was starting to get desperate

[LythamJohn]

Hi Johnfk, sorry to hear your wife is in such severe pain. Fentinol is only meant to be prescribed for end of life care. However, some GP’s prescribe it because the patient keeps making appointments. I would ask for a referral to the pain clinic as they’re the experts in pain management. I would also try and make an appointment with the senior Dr of the practice as the older Drs tend to bend the rule where newer Drs follow guidance more. Has your wife been prescribed Pregabalin previously as this is generally very effective with nerve pain, although it takes several weeks to build up in the patients system, which is when it becomes effective.

[Johnfk in reply to LythamJohn]

Yes you're probably right. Not many old Dr's about now though. They haven't changed The Hypocrite Oath though which they are braking via government guidance, pain should be a thing of the past.

[LythamJohn]

The GMC produce guidance on dosages etc and new findings on drugs. However, the GP’s go overboard as they don’t want to be seen to be prescribing more pain killers than other surgeries in area, resulting in patients being told they no long need Tramadol where there patients are just taken of them.

[Johnfk in reply to LythamJohn]

Thanks LJ, there seems no justice or sense in their decision making.

[LythamJohn in reply to Johnfk]

Challenge anything you feel is unfair, as opinions are like arse holes in that everyone’s got one

[happytulip]

It sounds like your wife need a thorough assessment with a Pain Team. Mine are brilliant. I have a Consultant Anaesthetist who specialises in pain management, a specialist pain physio, a pain Psychologist who teaches me coping mechanisms.

Prior to being medically discharged I was a medic myself and I would say that not many GPs should be prescribing medications like fentynl without input from a specialist. The treatment of pain must be determined by the type of pain. For example, fentynl won't help nerve pain and pregabalin won't help inflammatory pain.

Fentynl is also a highly addictive drug that is easy to build a tolerance to. We only need to look across the pond to see what harm that and oxy have caused.

That being said, your wife's pain needs addressing and while it sound ok for now I would still try to get a referral to a pain clinic.

Also, if I might add. Your pharmacist shouldnt be telling anyone about what GPs are prescribing to other people even if they don't give out any patient details. It's not professional or ethical. Whatever the doctor does or doesn't do, it is down to them and not to be commented on by their colleagues. Just my opinion.

I hope she gets some help with a pain team.

[Hidden]

So here in the US, a surgeon will prescribe only 3 days of pain medicine after a procedure and GPs won't prescribe it at all. They have really cracked down on opioid use. I see a pain management doctor and I had to fill out several forms and she takes a urine test every so often to make sure I'm not using anything else and just drug shopping.

[terry0400-40]

It seems that your wifes Doctor is a real arseole, i am poor and on a pension only because of cancer and now the chronic persistent pain side effects , get a few shillings together for me to come pay that busted arseole of a doctor your wife is treated by, I am certain a quiet talking to i could change his mind and he then he would be glad to prescribe some Fentyl for your poor wife.

I am beginning to get angry with some of these so called health care professionals