Medication reliability : Hello, i’m not sure if... - Pain Concern

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Medication reliability

Hopenellie
Hopenellie

Hello, i’m not sure if this is the right forum for this but i was hoping someone could give some advice...

Over a year ago i injured my shoulder and have scapular winging caused by a crushed long thoracic nerve. I am undergoing medical treatment with nerve conduction tests, physiotherapy and scans.

I’ve also been given medication to take, Co-Codamaol, Pregabalin, Tramadol, Naproxen and more. As i have been on these medications since the injury occurred i believe i have become reliant on them. I begin shivering and sweating, being sick, i get severe headaches and i am unable to sleep if i miss a dose or do not take the correct amount.

I need these pain killers for the pain i get from the injury as it has not made much improvement but i cannot cope with how i feel on it. I’m dizzy constantly and feel sick and confused.

Does anyone else know about how to cope with these symptoms and any holistic approaches to pain management?

Thank you!

23 Replies

If it is a result of the medication it will be the co-codamol and tramadol. The co-codamol contains codiene as well as paracetamol and the tramadol is a form for synthetic opioid which can cause withdrawl You need to discuss this with the prescribing physician. You still need to manage your pain but be able to control your analgesia intake as well. After a time it is not unusual for the body to develop a tolerance

I know little of the drugs you are taking except for the Naproxen which has given me stomach ache and headaches whenever I was prescribed them. happytulip gives good information & advice.

I agree it is important to control the pain and the drugs and not let either control you. Talk to whoever prescribed these drugs. If it is your GP ask for a drug review. Most GP surgeries now have pharmacists that can discuss these things. It might also be time to ask for a referral to the pain clinic.

Hopenellie
Hopenellie in reply to cyberbarn

Thank you for responding. I have mentioned it to my GP before and she didn’t say anything. My physiotherapist told me that she can refer me to a pain clinic so I will speak to her about that.

Thanks again!

That sounds like too many painkillers to me. You need to see your Dr. for help to reduce the amount you are taking.

Hopenellie
Hopenellie in reply to AML80

I did raise that with the GP but they said that because of the pain i need to have them all.

I agree though there are too many.

Co-Codamol, Pregabalin, Tramadol, all have horrendous side effects! The most effective analgesic with fewest side effects was Co-proxamol!

Unfortunately MHRA banned this drug on 1st January2008, the drug continued to be prescribed to ‘Named Patients’ who had tried all the alternative analgesia without finding a suitable substitute.

Following a flawed consultation by NHS England in 2017 it was decided that all remaining ‘Named Patients’ should be thrown under the bus and have their prescriptions withdrawn!

Extract from my Email

Subject: Fwd: Service Complaint (Co-proxamol) ‘For the attention of Simon Stevens'

Date: Wed, 6 Jan 2021 16:27

From: xxxxxxxxxxxx

To: england.ce@nhs.net england.ce@nhs.net

Dear Simon Stevens,

NHS England commissioned the report ‘Items which should not be routinely prescribed in primary care’; this report directly resulted in a life of misery for the remaining sixty thousand ‘Named Patients!

You can clearly see in my previous correspondence that NHS England Customer Contact Centre (the public facing part of your organisation) refuse to respond to my concerns and MLCSU who prepared the report for NHS England shift all the blame for its contents back to NHS England!

Following my response from the ICO I can only conclude that AS CEO OF NHS ENGLAND THE ‘CULPABILITY’ FOR THIS SITUATION APPEARS TO STOP WITH YOU!

The situation has worsened significantly since my last email Mon, 15th Jun 2020 9:05. The price per tablet has now reached £12.85 for one CCG!

These ludicrous and unnecessary price increases for co-proxamol must be investigated urgently as Co-proxamol could be imported direct from the Indian manufacturers for between 5 AND 10 PENCE PER TABLET!

openprescribing.net/nationa...

CCG Price per Tablet Quantity Ordered

NHS Stafford and Surrounds CCG £12.85 60

NHS Herts Valleys CCG £ 0.97 918

Co-proxamol was and remains the best and most cost effective analgesic for patients with no or very few side effects! Until August 2018 chemist.net was able to dispense Co-proxamol on private prescriptions for just 32 pence per tablet (this would have provided a reasonable profit for the company) irrespective of quantity ordered, (this later increased to 45 pence per tablet).

Many patients were prepared to self-fund this very necessary medication! Unfortunately this option was cruelly taken away from them without notice following an inspection by GPhC during August 2018! Following my unsuccessful FOI request from GPhC I'm now waiting for the outcome from an ICO decision notice.

Yours sincerely

xxxxxxxxxx

Co-proxamol was wrongly banned on 1st January 2008, thirteen years after the ban a few GP's are continuing to put their patients welfare first and continue to prescribe despite the astronomical cost to the NHS!

During August 2020 Stafford and Surrounds CCG paid £12.85 pence per tablet! [Email string Page 4], these tablets have been available for import from India for just £0.05 pence per tablet since 2017 from many of the manufacturers who supplied the 'Named Patients' since 2008.

Co-proxamol had been a completely safe (when tolerated and used correctly) and economical drug which had been used by patients for over 50 years.

openprescribing.net/measure...

Co-proxamol by all CCGs

Why it matters: The licence for co-proxamol (paracetamol 325mg, dextroproproxyphene HCl 32.5mg) was withdrawn by the MHRA in 2005, due to a lack of evidence of additional benefit compared with full-dose paracetamol and concerns about toxicity in overdose. Although co-proxamol has been unlicensed since 2007, and the number of prescriptions have significantly dwindled since then, it is still available as an unlicensed product for those patients who have found it difficult to have a suitable alternative analgesic. However, co-proxamol is now very expensive: in November 2018 one box of 100 tablets cost up to £700, with a median price of £90/box.

Ever increasing price increases show that NHS Stafford and Surrounds CCG would have had to pay £1285.00 for a box during August 2020!

I would consider giving this information to your GP and MP, NHS in the hope of having Co-proxamol reinstated.

That’s just cruel. Beyond cruel, it’s evil.

Hi Hopenellie i have been taking pregablin 600mg co-codomol 8 and amitrityline 75mg every day for 11 years for pain I didn't start on those quantities i built up very slowly i am very surprised that you have not been told that you would become reliant and that you have withdrawal symptoms if you miss a dose my pain specialist and GP both told me this and said i must never stop taking them without help from them to lower the doses very very slowly so as not to have these problems and if i miss a dose i also have quite severe withdrawal symptoms as well so please try not to miss any doses and talk to your GP about this. In addition i have to say my doctor also put me on tramadol but i had a lot problems including severe depression and came off them but i am not suggesting you do that either without discussing it with your GP as they work quite well in other people you have to find what is right for you. You do seem to be on quite a cocktail of drugs are you taking all of that together?Again i would talk to your GP or pain specialist to see if you could take less of some of these without impacting your pain relief, i have suffered with the confusion etc but again there are ways of how you take it that might help with that I definitely would ask to speak with a specialist who may be able to help you.

I can't suggest anything holistic that i personally think helps but i wouldn't suggest taking anything holistic with out again checking it won't interfere with anything you are currently taking and whatever you do don't just stop taking anything prescribed without help from a medical practitioner, I am very lucky that i have a really good GP and pain specialist.

I wish you luck constant pain is just awful.

Hopenellie
Hopenellie in reply to vivikin

Thank you for responding. Unfortunately i have been passed through so many doctors who have all prescribed me different medications that i am not sure anyone besides my GP actually knows that i am taking all of the medication i am. On top of that, i was taking 1200 mg of Pregalin every day as the doctor in hospital who prescribed me these told me to continue to increase my dose until i could feel the effectiveness that i could cope with. Needless to say that when my GP noticed this 6 months that, i was told that i was overdosing every day and needed to stop taking that many.

I was told the medication has known to be addictive however no one warned me of the risks to me and no advice on how to cope with withdrawal symptoms. Hopefully i get to see a pain specialist at some point. Thank you, and i wish luck to you to

I have pain in my left hip and leg caused by scoliosis in my lumber region. 20 years ago the pain was getting too much for me. I tried a series of prescription medications starting with ones for nerve pain and moving on to opiods. Pregabalin was the last of the nerve pain medications I tried and the dose was increased until I was on the top doseage. I thought it was not having any effect, but by reducing it in steps I found a point where there was a difference between the higher dose and the next step down. It reduced the tingiling from peripheral neuropathy in my feet but had no noticable effect on my back. Tramadol was then added and I took it for sometime with no pain relief and tried to reduce my dose with the aim of stopping it. It was only when I found out that the night sweats were an indication of withdrawal symtoms that I stopped taking it completly and lived with the pain. However several years later I went back to my doctor complaining of pain and was given cocodamol. Almost from the first this caused me to wake in the night burning up. Even at this small dose of an opiod I was getting withdrawal symptoms. Now I refuse all opioids and use other methods of pain reduction. I am retired so able to pace my self and take the pressure off my spine by lying or reclining between home based activities. I practice Iyengar yoga by regularly attending classes and using the stretches in between to keep my joints supple. I would recommend this approach to anyone who was trying to live with cronic pain.

Thank you for your advice and sharing your approach to chronic pain management. I have seen several people recommending yoga so i am keen to try it out.

I hope your pain eases and i wish you good health.

Hi there. I can’t advise on holistic help but have you been seen by a pain clinic? I think that would be helpful.

I have taken Tramadol for eight years and am currently weaning myself off. By chance I came across an article on opioid induced hyperalgesia. You would have to Google it but it perfectly sums up my situation. It is where the opioid ends up making the pain worse. I am slowly reducing the dose by an unorthodox method. I open the capsule and shake some of the powder out. Drs wouldn’t approve but it works for me. I was never able to cut out a whole tablet. I am down to a quarter of a capsule now three times a day but it has taken three months. I so wish I had never taken the drug. I also take pregabalin and am going to try to come off that too.

I realise now that they aren’t even helping any more and the lower the dose the better I feel. I hope this helps and you get some relief from your pain.

Hopenellie
Hopenellie in reply to Lynnha

Hello, thanks for replying.

I am waiting to be seen by a pain specialist but with covid at the moment everything is taking understandably longer.

I will definitely look that article up, my dad who has had experiences with similar opioid medications suffered with this where the medication increased his sensitivity to the pain and made his injury worse.

I am hoping to ease my way off the tablets but i don’t have any idea on how to do this and i’m not feeling confident enough to discuss my worries with my GP.

Thank you for your advice and support, i hope weaning yourself off the tablets becomes easier for you!

Aoibheann
Aoibheann in reply to Lynnha

Hi, I was just thinking to myself recently that I should try and open my Pregablin to reduce the dose, but it seems difficult for me. Any tips please.

Lynnha
Lynnha in reply to Aoibheann

Hi. Well i grip the capsule and carefully “unscrew” it. The powder is heaped up inside. I then level off the top with a cuticle stick. Then carefully “screw” it back on. After a week I would poke out a bit more powder. It’s obviously not terribly accurate but you can hold the capsule up to the light and see what’s in there. I hope this helps.

Aoibheann
Aoibheann in reply to Lynnha

Thank you for that.

That’s a smorgasbord of pain killers. My partner has a bone injury and has been on tramadol only for about 4 years. He does not increase but if he forgets he feels very bad. Other wise he says his quality of life has improved immensely. 100mgs in the morning 100mgs at night. Been the same for 4 years and still effective. No side effects.

I have been told that tramadol alone is effective but i’m pretty sure the other medications are counteracting each other and loosing their effectiveness.

All I can say is just take the weaning off really slowly. A pill cutter works on solid tablets but for capsules if you are on the lowest dose shaking the powder out was the best option for me. I found this tip on the internet. Good luck. It’s just so miserable being in constant pain,

Hello, I am on Pregablin 600mg daily which I think is the maximum dosage together with tramadol, mercarbamol and naproxen. Been on Pregablin for about 20 years. You should check out the maximum of Pregablin you are on. Have you read the instructions thoroughly. I am in constant pain and discomfort so understand what you are suffering. I would have no quality of life without my medication 💊. Keep in touch and let me know about your Pregablin dose. X☺

Hopenellie
Hopenellie in reply to Aoibheann

Hello, thank you for replying. I am on 600mg as well, thats mixed with everything else i mentioned in the first post. I have just had a consultation with a pain medication specialist and he said that all of my medications are now contradicting each other and having a reverse effect so i need to come off them. Its going to be a hard few months by hopefully i can manage to come off them x

Aoibheann
Aoibheann in reply to Hopenellie

Hello, gosh that's interesting. Maybe you should try and find for yourself which tablets work for you best. It is trial and error. I find the Tramadol lifts my mood, but not enough pain relief. What about paracetamol take 2 four times daily along with one of your prescribed painkillers. Find out what works for you best. Take care and let me know how you are getting on. 😊

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