Medication dilemma.

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Medication dilemma.

Postby Gunner Al » Thu Jan 03, 2019 10:40 am

Hi all, I'm in a quandry here, I had a lower leg amputation over 30 years ago, then 12 years ago, I had an accident at work which left me with a life changing back injury and a great deal of pain, since then, I've been on a few medications to try and give me some relief, from the basics like co-codamol, then Gabapentin, Pregabalin, Tramadol and Fentanyl, I couldn't get on with Gabapentin and Pregabalin, they just didn't suit me, making me dreary and miserable, plus, there was not enough pain relief. I used Tramadol for a while, but still, I was having issues with pain, but without the bad side effects. Eventually my doctor sent me to a pain clinic, this resulted in me being trialed on Fentanyl, I found it gave fantastic pain relief, but although I cannot remember, my partner told me, it made me short tempered, aggresive and agitative. I honestly cannot remember, as I've since had two seizures and my memory has been very poor ever since. I have no recollection and can only go and what my partner said.

To make life easier for my family, I came off the Fentanyl and reverted back to Tramadol, which I've been on ever since. Last June, I had to got to see my prosthetist in order to have a new leg made, sadly, my prosthetist had left the practice and I was put in the care of another, I can get on with anyone, but this guy does not listen to what I tell him, after 30 years as an amputee, I know my condition very well and am aware of what I can/cannot do and how I like my limb to fit and work. Since then, I've had over 20 trips to the clinic, had 4 sockets made and every time, when I go for a fitting, he tells me he's done this or that, against my wishes. The last time he did this was a month ago and it made me really angry, I could stand this no more, I lost the plot, I berrated him and reported him to his superiors, demanding they assign another prosthetist to me. I go back next Monday and hope I have someone else I can work with.

I was diagnosed with Fibro 18 months ago, after a long and strung out period, were I was not well, suffered a great deal and it was a condition I'd never heard of, this has been a devstating blow, on top of the limb and back pain, I cannot go about my daily life, because of the condition of my old limb and the current situation with the fitting, has had me at a standstill for over 6 months and it's doing my head in. I'm a quite active guy, I love the outdoors, cycling, walking, fishing and generally being outdoors. stuck in the house and having to use crutches to go everywhere is very limiting and not good for the soul, especially for someone like me.

Sorry, I went off on one there, recently, I've been having to endure more pain and have spent time researching medication, but all there seems to be, is the Gabapentin and Pregabalin, the Tramadol does no seem to having the effect it once had, (unless the Fibro is heightening the sensation), so I'm wondering if anyone could suggest another painkiller or medication that would help? I'm just about my wits end.

Thank you.

Alan.
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Re: Medication dilemma.

Postby *Lisa* » Fri Jan 04, 2019 11:28 am

Hi Alan,

Just a thought but maybe because you have become less active is why the pain has exacerbated. I feel as soon as you can get the fitting sorted and resume your activity levels things just may improve even if it’s a little.

Until then, there aren’t many strong pain killers out there now as the pain clinic (NHS) have cut many out. There is co- codamol. I do agree with your wife, Fentanyl can make one aggressive and angry. I have seen this in a friend of mine.

The pain clinic only has a few meds to play with so to speak. I am currently seeing a pain clinic consultant and they can’t offer me nothing. So many drugs have been stripped back or off the list it’s gonna cause a major problem with chronic pain patients. I need a muscle relaxant, have been using them for over 10 years for when muscle spasm. Been told NO!... “ We don’t prescribe ANY muscle relaxants any more” end off!...

Obviously I asked why? Apparently addictive drugs BUT I argued I wasn’t in that category of people. I have never used drugs, never attempted suicide, and in my 10 plus years of using muscle relaxants I have never OD or mis used OR got addicted!... my only back up med :shock: I’m now waiting on a letter to see what my fate is. All the pain clinic consultants are gonna discuss my case.

So I went off there... suppose what I’m trying to say is there isn’t many options now and so many people are looking at alternative pain relief like CBD oil, treatments, therapies and homeopathy.

I know not many people can but going private is a better option as somehow these consultants have a wider range of medication (not NHS controlled)

Apart from this forum which is a part of the UK Fibromyalgia website there is information on different types of medications see here... http://ukfibromyalgia.com/pages/treatments.php I know an anti depressant called duloxitine is another medication used for fibromyalgia.

I hope you find something that helps.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Medication dilemma.

Postby perseus » Fri Jan 04, 2019 10:48 pm

Alan

I've lost patience with the people arranging orthotics for me, and can't shake off various problems with both feet. I second Lisa's comment, I take Duloxetene for Fibro, it's one of the main medications for Fibromyalgia. It doesn't surprise me that Tramadol is less effective after so long.

Privately, I've been prescribed Tapentadol which is a stronger opioid than Tramadol. My GP carried on prescribing this, but after he retired my new Doctor won't prescribe it any more. It might be connected with a general policy of reducing opioid use.

https://bnf.nice.org.uk/drug/tapentadol.html
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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Re: Medication dilemma.

Postby Gunner Al » Mon Jan 07, 2019 7:40 pm

Thank you for the replies, with regard to duloxetine, I tried it last year, but the side effects of tiredness and very bad dreams/nightmares caused me to get off them quick and back onto Citalopram. Ironically,the day after my last doctors appointment (last week), I recieved an appointment to attend a 6 week course of Pain Management Programmes. Each appointment is 3 hours on a weekly basis and starts in late February and my doctor has informed me that they will not change my medication until after the PMP.

One thing that has me baffled, when I saw my doctor last week, I asked him when I was diagnosed with Fibro and how long I'd been getting treatment for it? He told me that I've not been diagnosed with it or being treat for it. I'm very baffled, as my surgery contacted the Pain Management Team and passed on my records, which clearly outlines my conditions and all my medications.

Watch this space.........
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Re: Medication dilemma.

Postby Tricky77 » Wed Jan 23, 2019 5:01 pm

Hello Gunner Al,

I am so sorry to hear all that you have been through. I have been diagnosed with Fibromyalgia 2 years ago and have also tried a miriad of drugs including *Gabapentin which gave me severe heart palpitations, *Palexia (Tapentadol) which caused me to have terrifying blurred and distorted vision for 45 minutes after 8 days of taking it, *Pregablin which made me dizzy, loss of balance, gastritis and heavily fatigued,

*Buprenorphine patches caused me whooziness, sleepiness, irritability, low blood pressure and heart palps, *Duloxetine which was horrendous - like a bad stimulant, nausea and insomnia, *Amitryptiline which was also horrendous and *Tramadol which actually really helped my pain and energy levels for about 6 months then had no effect after that even after increasing the dosage and spending around 3 terrible months trying to ween myself off it. I tried morphine patches but they made me very sick and a muscle relaxant that I can't remember the name of which made me feel awful for several days after taking just 1 tablet.

You shouldnt have to attend the Pain management programme before you get access to meds - I couldnt attend because I couldnt get to the venue or sit for 3 hours long!! The Pain clinic changed me from Tramadol to Tapentadol on my first appointment with them. Recently my doctor tried me on DHC Continus 60mgs- slow release Dihydrocodeine but I felt awful on them - have you tried these?

I now take Codeine 30mgs X 2 up to 6 times a day which help slightly with my pain and have less side effects than the above meds. Have you tried CBD Oil at all? I had different experiences with it such as headaches and sore throat as it tasted vile. Look forward to your reply! :-D
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