Is this normal?: Over the last month I... - Fibromyalgia Acti...

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Is this normal?

charlie_red profile image
17 Replies

Over the last month I have tried several new pain killers to try and get my pain under control .. dihydrocodeine, 30/500 cocodomol, tramadol (100mg), morphine and I am now on Tramadol (slow release and breakthrough tablets throughout the day).

I find it really strange that I have had no side effects, and with no side effects follow no pain relief .. Is this normal? Has this happened to anyone else? Even the morphine doesn't touch the pain!

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charlie_red profile image
charlie_red
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17 Replies

Hell that's not right have you spoke to your doctor about it? When i was at my worst with my back 6 years ago i found nothing helped even the fentynol patches.

Hope you get relief and answers soon.

charlie_red profile image
charlie_red in reply to

Yeah spoke to the doctor about it and have to try the Tramadol slow release tablets for a week or two more ... I'm back at the doctors this Friday!

C x

aiden profile image
aiden

i take a magnisiamtablet once a day and vitimen D tablet one a day and have been perscibed with Gabapentin, as i went through all the things you listed and never worked,,went to the pain clinic and was advised to take all the above,,and my pain is barely there now,,hope this hleps

charlie_red profile image
charlie_red in reply toaiden

Oh that's good to know, I'll speak to my doctor about that, thanks!

C x

SootyB profile image
SootyB

I get no side-effects (I have a theory that a lot of the side-effects - unless they're due to intolerance - occur because the pain is insufficient for the meds, but that's only my theory) from co-codamol, although I did have bad side-effects when I tried them before fibro for a lesser pain. I do, however, get pain relief, so you probably do need to see if they can prescribe you something like amitriptyline, gabapentin, or pregabalin. They're not conventional pain-killers, but they are quite effective, especially if the opiates and other strong analgesics have failed.

Good luck! xx

charlie_red profile image
charlie_red in reply toSootyB

Hey!

That sounds a good theory! I am on Amitriptyline, Gabapenting and Tramadol just now. Back to the doctors on Friday!

C xx

Sarah-Jane profile image
Sarah-Jane

I am also puzzled, but find Amitriptyline, Pregabalin and Co-Dydramol work for me, with the added help of my TENs machine when I damage myself and the pain hits the roof!

See if you can get any help from a Physio Therapist too. Though you will need to make sure they really know and understand FM. Mine thought she did and made me do exercises that almost cost me my job! If that happens to you, talk to them and explain - be their educator and together you may find a solution.

I do hope you find some help soon. Good luck. Soft hugs.

charlie_red profile image
charlie_red in reply toSarah-Jane

Hey Sarah Jane,

Thanks for your comment. I have the TENS machine so I think I will be using that again today. I have tried physio therapy but the pain was so much worse, even with gentle exercises. The last three or four weeks have been unbearable, hoping it can only get better!

C xx

fibro profile image
fibro

many medications take a while for your body to become accustomed to them, before you get the real benefit.

I'm concussed that you have tried so many different meds in just a month, are you giving them a chance to work!

amongst other things I've been taking diazepam since July /August time and the effect from them are different from when I first started taking them and also now removing just one tablet from one f the other meds, I'm getting better results.

I don't know if I have misread your post, but I have never come across a GP who would keep changing meds so quickly...... but then I might be wrong!

hope you manage t get some relief from something. have you tried using a aTENs aching, you may find that better than chemical medication xx

charlie_red profile image
charlie_red in reply tofibro

Hey!

The only reason I have been on so many different meds is because the pain has been so unbearable, so doctor has been looking for something that will work quickly and effectively. I am now on Tramadol and have been for the last few weeks, I still haven't felt any difference, doesn't even take the edge of the pain, even on the max dose. I have a TENS machine and have been using it for a while, going to put it on today to try and get some relief, I just feel that I can't take much more of it as it's beginning to affect university etc.

Thanks for your comment, hope your having a good day!

C xx

Ozzygirl64 profile image
Ozzygirl64

Nothing works for me, not even the Amitrips. I am not on any pain meds. I hope you get it sorted soon. I would say it is difficult to find a pain med that actually works due to the fact that fibro is a chemical imbalance in the brain, this can make the mildest pain feel like your worst nightmare. I know that because I caught my toe on the end of the quilt causing the toe to bend back slightly and pulling it, to me that felt like I had broken the toe. xxxxx

charlie_red profile image
charlie_red in reply toOzzygirl64

Hey Ozzy Girl,

How do you manage your pain without meds? I have considered trying alternative methods but I have no idea where to start - I use the TENS machine and have regular massages. Yeah that's true, hope your toe feels better soon!

C xxx

Have you discussed this with your GP Charlie?! If all of those meds had no effect on you at all, your GP should know about this. What is your current medication, does this work?

Hope to hear from you soon about this. Take care. :)

charlie_red profile image
charlie_red in reply to

Hey LibertyZ,

I was at the GP last week and shared my concerns with her. I told her that I am getting no pain relief from my current medication. My medication just now is -

Gabapentin (1800mg a day)

Amitriptyline (70mg at night)

Tramadol (100mg slow release twice a day and 200mg max throughout the day)

I am seeing the doctor on Friday to evaluate my medication, I just need some relief because I am in so much pain, nothing seems to be working!

C xx

in reply tocharlie_red

Thanks for getting back Charlie, I hope Lindsey's post below helps you. :)

Wishing you all the best for your appointment on Friday, please let us know how you get on. xxx

LindseyMid profile image
LindseyMid

Actually, it is quite normal with Fibro to find that opioids are ineffective. With Fibro, we have fewer available opioid receptors than is normal, so those drugs simply cannot work as they would in someone without Fibro. The research that showed that explained why so many people who are put on the typical (for non-Fibro pain) opioid pain med regime get little benefit. This is why strong opioids are not recommended for Fibro - you may get some side effects (as Fibro makes some people more susceptible to side effects) without a good level of benefit. Mild opioids like Codeine and Tramadol are recommended because you may well get some benefit and side effects are relatively mild. Tramadol also works on some neurotransmitter levels.

Looking at your other meds, research does not support the use of Ami for Fibro long-term or at doses of more than 50mg, so that not working does not surprise me.

Some people find relief from the Pregabalin/Gabapentin family of meds, other don't. Pregabalin (which has been studied more with Fibro) was found to only benefit around 50% of patients. So you may be in the other 50% that don't benefit. Some people do respond to Pregabalin and not Gabapentin (and vice versa) though, so it may be worth discussing with your doctor whether switching to Pregabalin is an option.

Has your doctor discussed with you what your biggest problematic symptoms are in order to try and target good medications/treatments? For example, if you had a back problem and neuropathic pain, Pregabalin/Gabapentin are often good things to try as they are used for this as well. If you have bad muscle spasms and tight and/or weak muscles, you may have bad myofascial pain and require treatment targeting this - medications with a muscle relaxant effect, specialist massage therapy, physiotherapy and/or injections. If your sleep quality is particularly poor, treating this should be a priority as otherwise nothing will work well. Clonazepam is a med used by some Fibro experts that actually improves sleep quality in people with Fibro, rather than just trying to knock you out. Many GPs are nervous about prescribing it because it's in the same family of meds as Valium, but it would usually be prescribed for Fibro at very low doses at bedtime only, so reducing the risk of side effects.

HTH!

chrissy30 profile image
chrissy30

I quite agree with Lindsymid as to opioids as I use to take very high doses of morphine for pain but the doctors were very surprised I did not suffer with side effects apart from constipation. I also suffered with terrible migraines and was on injections of Morphine 6 or 7 times a day but to no real avail. I've now come off morphine apart from one tablet first thing in the morning and the rest of the day I make do with dihydrocodiene and ibuprofen during the day and an occasional Valium 5mg when things get a bit hairy. I'm in pain all the time and have head and face pain and about a month ago my headache specialist gave me 31 injections of botox in my forehead/back of head and side of head an I have to admit there was some reduction in pain although I could not frown and my right eyelid has drooped. I've had Fibro for years and been through so many meds I've lost count but I find treating simply is the best way for me. Sometimes trying to accept the condition, albeit its frustrating and life changing can help. I was trained as a mental health counsellor but now retired and I use therapy on myself that I use to use with my patients which helps and that is relaxation therapy when I can. I still suffer from intense pain in my spine as I ended up with Osteoporosis as I have coeliac disease which was not diagnosed for years so that has done damage to my bones causing more pain also I suffer with arthritis. I try to keep a good sense of humour as that helps and I tell people when I can't do something or need help so never be afraid to ask for help if needed. My husband also suffers with Fibro and is on opioids but even though the pain clinic has advised him to cut it back he finds it difficult to do so. I know its not helping him as he still suffers from pain and then also takes other painkillers not prescribed but one has to find ones own way with this horrible illness. I sympathy is with anyone that has this horrible disease but don't give up as they are discovering more and more about it.

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