What (If any) pain medication works for you?

[Kasha]

I take co-codamol and Naproxyn, I think the Naproxyn makes a slight difference but I still have lots of stiffness and pain, I want to see my GP to ask her to look at prescribing something more effective.....but what? So What works for you?

[Hidden]

I take Gabapentin 300mg 3xtimes a day and I take Tramacet 3 or 4 times a day (1xtab or 2) Tramacet is Tramadol and Paracetamol combined it has helped a great deal and I can get through the day with less pain I also take Lofepramine which is an antidepressant I have been taking it for many years before diagnosis of Fibromyalgia as I have Bi Polar,it is in a group of antidepressants said to help with the symptoms of Fibromyalgia so G/P keeps me on them as they certainly have made a difference regarding my moods xxx

[ladymoth]

I take anything I can find lying around in the drawer, and none of it works very well!

Seriously, I just take Tramadol and paracetamol - can't take anything else because of stomach ulcers, but fortunately that helps quite a bit.

Moffy x

[CryBaby]

Lyrica / Pregabalin. Up to 600 mgs a day. Amitriptyline helped for about 3 weeks - it got me walking again. Pregabalin still in progress- it's helped the Fibrofog but not the pain as much.

[Hidden]

None

[Angel_153 in reply to Hidden]

Hi Grumpy

Pls see my post below - have you tried DLPA ?

xXx

[grandmakim]

Hi I am recently diagnosed and take tramadol and paracetamol but decided on thursday night that as the tramadol wasnt helping and made me feel so sickly and spaced out and generally unwell I was going to try without it. OMG the spaced out feeling has gone but now know that although it wasnt taking the pain away it was infact helping as today I feel so stiff and achy and am finding it difficult to even walk , infact I cant pinpoint an area at the moment that I dont have pain. I see my GP on tuesday so hopefully I will get an alternative to the tramadol to try. I feel at the moment as though my life is over but then I come and read the comments on here and realise there is hope. Hugs to everyone

[Hidden in reply to grandmakim]

i actually like the spaced out feeling helps me get a good nights sleep x

[maryharrison]

Yes I did exactly the same as you I could hardly put one foot in front of the other. My GP gave me oramorph and Zoromorph it has helped quite a bit and it is good not taking so many tabs as the zoromoph is time release so only take it twice a day.

Mary

[Angel_153 in reply to maryharrison]

Hi,

I'm on oramorph, but haven't heard about zoromorph. Is it just a timed-release version of oramorph, like you can get the sustained relief version of oxycontin?

xXx

[Wendylulu]

At the moment (!)...I take naproxan .. Co codamol as little as possible as it is addictive.. Too many reactions to pregabalin and gabapentin..nortiptyline makes me like a zombie all day... So at the mo not taking that...Not sure where to go from here.. Pain pain .. Know your name ...

[Angel_153]

Hi,

That's the problem with "treating" fibro - a lot of us (though by no means all) are horrendously sensitive to all kinds of usually well-tolerated meds .

I had terrible side-effects / reactions to amytriptaline, tramadol., all NSAIDs (brufen, ibuprofen, naproxen, etc), paracetamol (obv includes co-codamol, which I was on when I was very much younger and slightly less intolerant), aspririn - in fact, most of the usual pain killers.

We finally found, through trial and error (I'm lucky enough to have a very understanding GP) that I can tolerate most of the opiate group of analgesics, so I've been on dihydrocodeine and oramorph for several years now. There was a brief foray into the land of timed-release patches via the initial diagnosing rheumy, bupronephrine (sp??) another type of morphine, but that made me vomit violently, which is my body's standard bad reaction to a substance it doesn't like / can't process.

I have also found that the amino acid DLPA (the DL form of phenylalanine) works reasonably well for me, and a lot of other people. It acts by binding to the same sites that morphine does, so can be regarded as natural morphine, in the same way that Valerian is natural valium. (These sites on individual cells are the ones that tell the brain the body is in pain, and when they are blocked, the pain signal doesn't get to the brain, hence we feel pain-free). This must not be confused with ordinary L-form phenylalanine, or plain phenylalanine (the "L" just means it is what is called "free form", and won't ineed any work by our already beleagured digestive systems to detach it from another molecule in order for our bodies to use it - always get the free form type of amino acids, avoid the peptides, tri-peptides, etc, there's bugger all chance your digestive system will be able to use them). Ordinary phenylalanine is a speeder-upper, not a pain reliever. It goes towards making thyroid hormone and some adrenal hormones. You can take DLPA any old time, including bedtime, whereas phenylalanine would keep you awake all night (if you aren't one of us that suffers the insomnia part of fibro already).

I think the important thing to bear in mind is that we all have different substances that we can or can't tolerate. I took one look at the side effects list for gabapentin (I'd rather use the natural GABA anyway, gabapentin only exists because drug companies cannot make money out of anything without a patent, and you can't patent a naturally occurring substance like Gamma Amino Butyric Acid, so they had to invent a synthetic "similar", same with pregabalin) when it was suggested by a neurologist to stop my migraines, and I knew I'd have a vile reaction to it. I think it's important to recognise what your particular body can and can't cope with, and find out what works best for you.

As regards all the heavyweight painkillers being addictive - whether that is accurate for each individual or not is likely debateable, but even if it is, at the low levels GPs are allowed to prescribe us, we aren't very likely to become raging junkies. Being in pain is THE BIGGEST STRESS ON THE HUMAN BODY. It prevents healing, stops the immune system from working correctly, and only compounds the vast majority - if not all - of our many fibro signs and symptoms. I would far rather be in less pain than taking the superior "I don't believe in painkillers" attitude. To my mind, the only people who can truly shun pain relief are those who aren't in as much pain as some others. It is not possible to live in severe pain on a permanent basis.

Hope this helps, and good luck in finding something that at least takes the edge off.

xXx

[Kasha in reply to Angel_153]

Thanks so much Angel, really interesting post

[Angel_153 in reply to Kasha]

Thanks Kasha ! This illness is so blooming horrible, anything I can share that I've learnt in 30 plus years of having it, I'm more than happy to share if it helps someone else. If we can't look to each other for help, we're frankly a bit stuffed, eh? LoL

Thanks again for positive reception of my rambling, overly long post - I get a bit carried away when I am able to think straight and type a bit. Too many times when I'm stuck in bed and can't even turn the laptop on, so I guess I overcompensate on the occasions when I can do some posting.

LoL, like I'm doing now!

A

xXx

[Hidden in reply to Angel_153]

I totally agree with you,there is no way i can live in constant pain everyday i have to take my painkillers i want some quality of life the less pain the less stress xxx

[Angel_153 in reply to Hidden]

Amen to that !

XxX

[Cail in reply to Angel_153]

Yes indeed.....DLPA is astonishing.

Hard to find other useful supplements these days, as drug companies exert pressure on legislators (I'm in Ireland) Kava, for example, was banned, and GABA and 5HTP followed. But DLPA is such an amazing substance that I have finally quit gnashing my teeth about all that.

I use it with Lyrica (which I do not adore) but together they have made a very big difference.

(My preference would be opiates/oids, instead of pregabalin, but there's not much chance of that where I live.)

Do try DLPA xc

[bora62 in reply to Cail]

What is DLPA and where do you get it from please x

[Malwimmy27]

I take tramadol and paracetamol. I also take cymbalta. I found that naproxen didn't help at all. I hope you manage to find something that works well for you.

[Hidden]

I am on BuTrans patches paracetamol ibuprofen nortriptyline and duloxetine for fibro and opain related other conduiions

[_Phoenix_]

The only thing that works for me is 60mg Dihydrocodeine. I'm prescribed Tramadol as well but for me it doesn't seem to do anything (although when things get really bad I do take it as well as the DHC out of desperation but not sure it makes much difference!!).

I only take the Dihydrocodeine on a PRN basis but I probably should take it more reguarly but I'm worried about working/driving when I'm on it as it can make me feel a bit woozy.

Does anyone else find taking pain meds helps with the fatigue as well? Not sure if that's due to getting a bit of a 'high' from the meds, or just not having to cope with constant pain?!

[Angel_153 in reply to _Phoenix_]

phoenix,

I'm also on DHC, and it's one of the few things that helps, especially when it comes to dealing with the headaches that go on to be full blown migraines.

I have found that a lot of drugs (and herbs) that have a sedative effect make me feel a bit more energetic - this is because they are damping down the inflammatory branch of the immune system's activity. I don't know if it applies to everyone with fibro, but it certainly seems to apply to some of us. I know someone who takes 20mg of valium so she has the energy to do her housework. Valium, I discovered during a horrible suicidal patch in 2010, gave me some energy and some clarity of thought the day after taking 5mg. Of course, this flies in the face of conventional understanding and use of valium, which is a tranquillizer, bit my GP understood when I explained my theory about damping down the immune activity.

In fact, my consultant was so excited when I explained it to him, that he wrote copious notes, and is now mysteriously writing papers about fibro. Hmmmm - !

\We used my theory to try and get my high dose steroids down, and last year, I managed to get them down from 130mg a day to a mere 70 a day within an unprecedented short time - I usually have flare up after flare up if I reduce by even the smallest possible amount of 2.5mg. That worked fine, using temazepam and or valium two or three times a day, as I felt I needed it (PRN, same as you, same as most of my drugs list). Then I had horrors with DWP and other major stressors from summer onwards, my sitting/standing blood pressure plummeted on standing again (is what it does when your adrenals are undersupplied) and we had to increase them again. I've been stuck at 130mg for ages, just spent the last three or four weeks trying to back up my adrenals with B5 and reducing hydro to 100mg, with limited success. I don't think I'm converting B5 into the active form.

In support of my damping-down-immune-activity theory, my immune system at the moment is struggling big time, and I can easily see that it's down to the temazepam and valium. Morphine and DHC suppress immune activity too, and whenever I've had more pain than usual, historically over 6 years or so, and way before temazepam etc, I have felt it in the form of a small cold, or a bit of chestiness, or a sore throat, etc.

I guess the trick is balancing it all out. Not easy.

The other thing in support of my immune system theory is that I think at least one of the reasons we get so exhausted is because of this immune activity. If you think how everyone feels when they get the flu or something, how tired they feel, how much they sleep until the virus has been fought off, you can understand how knackered immune activity makes the human body feel. So, instead of it being an energy PRODUCTION problem, which is something I chased round trying to find solutions to for years and years, I now think it's an energy OVER-SPENDING problem. All our energy is being used up by the over-enthusiastic immune system, driven by the hypervigilant brain which thinks we're all in dire mortal danger from everything around us all the time. Of course, being in hypervigilant, Fight ior Flight mode also puts continual stress on the adrenals, which are not designed to cope like that. And that would then account for the large numbers of us who are adrenally deficient, and the reason why stress of any sort makes us so very much worse.

Does that help?

A xXx

[Kasha]

Thanks for all your replies, There's a broad range to go at there! I cant take Tramadol it makes me feel awful...I'd rather be in pain.....Can anyone tell me if you are allowed to drive on Morphine? and is the type of drug that I could take now and again when the pain is particularly bad or do you have to be on it all the time?

[_Phoenix_]

You can take Morphine based drugs on a PRN basis but I do not think you would be able to drive on them x

[Angel_153 in reply to _Phoenix_]

Hiya,

I think there's a warning on the packet about driving and operating heavy machinery, but different people react in different ways to these types of drugs. See post above for how these actually wake some of us up!

A xXx

[_Phoenix_]

That does help indeed, very interesting reading thanks Angel!

Can I be nosy and ask what you're on the high dose steroids for? I too have terrible problems tapering down my steroids- been trying to get off them for the past 18 months, had to take the last month off work in order to try and come off them properly but I am quite frankly feeling horrendus now I've managed to get them down, and not quite sure how I'm supposed to go back to work the week after next when I'm off them completely!! xx

[Angel_153 in reply to _Phoenix_]

Yes, of course

Knackered adrenals, dx'd privately in 2000, took the NHS several years to catch up. I was on the standard physiological replacement dose of 20mg/d, increasing according to stressors like illness, etc. Then I got breast cancer, and still being as then undiagnosed with fibro, the hospital didn't really take my concerns about chemical sensitivity terribly seriously. Until they saw what it did to me - lost all hair within a week of first dose, threw up all day every day for months, despite a cyclizine pump and 7 - yes, seven - different anti emetics, was so illI wanted to die. I couldn't do anything except be asleep, wake up, throw up, pass out. It was pretty ****ty.

Tapering steroids is usually reasonably non-problematic for "normal" people, and I'm actually comforted (in the best way possible!) that you also experience difficulty reducing, so thankyou for posting about it - nice to know I'm not on my own with this!.

I still think, at least in my case, that fibro definitely has an inflammatory aspect. The steroids make us feel better because they relieve the inflammatory responses that our over-enthusiastic immune systems launch in order to protect us from our brain's perception that EVERYTHING is out to get us, LoL, and because they relieve whatever inflammation is already there. I can't accept that fibro doesn't involve inflammation. The different types of pain I get include one where the bones in my hands feel so ridiculously sore to the lightest touch that it feels as if I've stuck my finger into an open wound. I can't wash my hands without crying when it's really bad. I think it's the covering of the bone, the periosteum, which is full of nerves, that gets inflamed and the large amount of nerves in there don't do anything to damp the pain down, obviously! Or, maybe the nerves themselves are inflamed. I don't know. I do think though that whatever it is that causes that, and probably the muscle pain too, is inflammation-based.

I know that when I reduce my steroids, I get an increase in migraines (which definitely involve inflammation, and ice packs help me on top of the Imigran), an increase in all the different pain I get, a decrease in energy and brain function, and generally feel very ill. It's the only time I ever sleep more than 3 or 4 hours at a time. I still don't feel like I've slept at all when I eventually wake up, so it doesn't seem to benefit me in any positive way

The adrenal steroids are all made from cholesterol combining with B5, pantothenic acid. You might want to investigate taking higher dose than normal B5, or, if you think your adrenals and or your ability to produce conversion enzymes is shot or heavily compromised, you might want to look at the activated (coenzymated) form of B5, which is available. The first steroid that comes down the cholesterol+B5 pathway is one called Pregnenolone. At the moment, I'm supporting my reduction from 130 to 98 (I take hydrocortisone and as little prednisolone as I can get away with, and pred is counted as 4x stronger than hydro, so 1mg pred=4mgs hydro) with 5mg of pregnenolone. I'm testing it out to see if I can still convert preg into the rest of the steroids on that pathway - cortisone being the end-point. I tried taking a second 5mg half way through the day recently, but conked out, so I don't know whether my body was going, oh goody, here's something we can do some repair work with, let's get busy! or whether it was going, oh cr*p, what are we supposed to do with this? I'll let you know how that goes.

Which steroids are you on, and how much? How long have you been on them?

The only other thing that helped me reduce last year - although it currently doesn't seem to work at all, which is a b***mer, wast taking sedatives - they seemed to switch off my immune system enough to stop the inflammation that the hydro was dealing with, and I came down rapidly from something like 160mg/d to a mere 70mg/d, and we were all very pleased. Unfortunately, we had to up the hydro again, and I'm sort of stuck at the moment.

Although, and this may or may not be due to taking extra vit D for the last week or so, I did manage to get out of bed today and even did a tiny bit of shoving the Dyson around. Then the bloody thing broke, so I can't do the hovering I so desperately need to do! I've got SO much dust and SO many cobwebs everywhere that the spiders have presented us with a rent book for taking up space in their house! LoL. I haven't been out of bed for a whole day for longer than I can remember

The only other thing I can think of that might help me reduce is to up my intake of anti inflammatory substances, like fish oils, and some different herbs. There HAS to be a way round this. There just has to be. I'm sick to death of looking like the girl who ate all the pies., and having well meaning people ask me when my baby's due. That, plus the risk of diabetes, the osteoporosis, etc etc, are all things I want to stop. Like yesterday.

Hope this helps,

A xXx

[_Phoenix_]

Very helpful again Angel thank you!

Ah bless you, you poor thing, you sound like you've really been through the mill

I will definitely look into the B5, that's interesting. I'm not sure I can convince my GP for anything sedative, they seem dead set against anything like that/possibly addictive. I only get the DHC because I've been on it for years and years!

I'm on Prednisolone for Ulcerative Colitis- top dose of 40mg, which I've now worked down 5mg this week (been dropping down 5mg a week as so bloomin desperate to get off them quickly this time, as like you I'm completely fed up of all the side effects!), which probably isn't helping things- but I've tried reducing by 2.5mg too and I felt just as rubbish....

I hope you manage to get off them soon xx

[Angel_153 in reply to _Phoenix_]

Hiya,

Oh, them docs and their "You'll get addicted" routine......I'm sure that it does apply to some people, but I know it doesn't apply to me. I had a slipped disc when I was 19, ended up in hospital, came out of hosp 10 days later with instructions to take something like 20mg valium a day for the muscle spasms that had pushed the disc out in the first place. Took them for a few days, didn't take them when I didn't need them (in other words, I'm pants at remembering when to take meds and only take them - T3 and hydro not included in this - if I am reminded by getting symptoms. Anyway. I'd been force fed valium in hospital, was on and off it for what would be considered Long Term Use, and since no-one had told me about addiction, when I stopped it, I did so with no conscious thought, just stopped it, and had none of the withdrawal that they talk about. None.

My GP listened properly to this, and my theory about fibro being maintained by a hypervigilant brain, and all my associated research and observations about my own reactions to valium duing "Suicide Summer", and since then has prescribed me a reasonable quantity of valium on monthly repeat, something he says he never does.

Ironically, I'm taking less of it now (if any at all, most days none, think poss an average of 5mg a day during spasm attacks, and none if I'm spasm free) because I've noticed that it squashes my immune system too much for my liking.

Pred - 40mg pred is the equivalent of 160mg of hydro - this dose of pred is the standard dose for any acute inflammatory condition, like my reactive calcific tendonitis. I shot up by another stone in weight, and had a terrible job reducing. In the end, I converted it into hydro doses, and found it was easier to reduce from that than from pred. I don't know why it seems more difficult to reduce pred rather than hydro, but I feel it may be down to the simple fact that hydro is closer to the natural cortisone than pred is. Maybe you could talk to your doc about changing to hydro instead? It's cheaper than pred, so he/she might be up for at least giving it a go.

You have done an almost impossible thing in reducing from 40mg to 5mg........I'm not surprised you feel rubbish! Is your GP aware of the sitting/standing blood pressure test of adrenal function? If your adrenals are "fully funded" (as my GP puts it) then your blood pressure should rise a little bit AS SOON AS YOU STAND UP. If it drops by more than 10 points (am having some fibro fog and not able to recall if it's the top or bottom figure that's relevant, but I think it's......no, fibro fog prevails, dammit) then your adrenals are struggling. When it drops like that, it's called Postural Hypotension, and is the reason we get dizzy/faint when we stand up "too fast".

The whole point of this test is that the blood pressure is taken IMMEDIATELY on standing, so when me and my GP do the test (which is pretty much every time I see him), we have me sitting for several minutes whilst we consult and discuss, then we do the sitting BP. As soon as we've noted that, he pumps the cuff up again, and as soon as it's fully inflated - not before - I stand up with my arm out straight in front of me. Pressure is then read, and 9 times out of 10, it drops. Sometimes by as much as 40 points Then he says, "Underfunded, please increase, I know you don't want to, but you must." I pull a face, agree to increasing by 2.5mg, spend another few weeks in bed feeling like pants, and eventually up it by another 10 or 20. Really does my head in, especially when I see a new specialist and they treat me like an unco-operative idiot by telling me that I really must reduce my steroids. Like I want to be fat, at risk of diabetes, osteoporotic, with high BP, a daily facial hair plucking routine, etc etc etc. I don't want! I try! They don't seem to understand that. One specialist threatened me with a six week inpatient stay (sorry, OFFERED me an inpatient stay, Lol) so that THEY could reduce my steroids for me. I declined.

Back to sedatives. If your GP won't co-operate, which is daft because as long as you're monitored, and they limit the amount given on prescription, there's not much chance of provoking an addiction, then you might want to investigate some natural options instead. Some calming amino acids/ neurotransmitters/ nutritional factors/ herbs /etc are:

GABA (Gamma Amino Butyric Acid, the stuff they developed gabapentin and pregabalin from so they could patent it and make money)

Taurine

5-HTP

Tryptophan (is one step further back than 5HTP, and if you have conversion problems then 5HTP would be easier for your body to cope with)

Valerian (is what they developed valium from, as above)

Kava Kava (had reports of liver toxicity and got withdrawn in many places but if you use it correctly there are no associated bad side effects that I'm aware of - but check it for yourself)

B6 taken at night

Theanine

Magnesium

I'm sure there are others, but my brain is having a foggy patch.............

Thankyou, phoenix, for your kind words I'm sure there are other people who have had it far far worse than me, and who still have a harder time of it than me. I'm determined to get well again, hence the interest in natural medicine and all the research.

Let me know how you get on, and good luck with going back to work,

A xXx