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Fibromyalgia Action UK
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Untreatable

Hi everyone just wondered if anyone else on here is pretty much untreatable for pain. I'm allergic to opiates e.g. morphine, codeine, tramadol etc and due to other conditions can't take anti inflammatory and nsaids I have no relief from the severe pain at all even at the hospital they can only give me entenox if your like me how do you cope?.

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Hi sweetpea I’m kind of immune to tramadol now and my docs aren’t really interested at all so I myself just deal with it very depressingly I might add as having no support no partner it can be a real challenge to keep ok it’s an awfull illness and takes practically everything from you and you battle to hold on that’s all I can give you really just keep fighting 😬 lots of hugs and love alexandra xx

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Thank you Alexandra it's comforting to know I'm not the only one love and hugs to you to and to everyone who falls into this untreatable category x.

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I'm hoping that I can get psychological support for pain. Like you I have to stop different drugs due to side effects.

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Hi spider I hope you can people underestimate just how much harder it is mentally to cope with pain that can't be treated I try breathing exercises to help cope but it's a struggle to concentrate I often just find myself holding my breath which just makes things worse but once I can manage to get a grip I can normally push on but it's an uphill struggle I feel your pain and hope you can get the help not just that you need but that you want soon x

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Yes exactly, it's totally relentless.

The pains always in the foreground, instead the background. No wonder people become so depressed.

When you can't sleep or try to sleep, then the pain wakes you up.

I was so burned out and hopeless that we had to turn to the crisis team.

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Bless you I feel relieved in a way to know I'm not alone were all in it together it's so easy to close yourself away from everyone and everything it's nice and kinda comforting to know we're not suffering alone and at least someone some where knows what were going through everyday and night x

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Hope you can get some relief x

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You too and thank you for replying x

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sorry for the brief response. other treatments to consider:

capsicum cream

CBT

hydrotherapy / warm baths

amitriptyline / other antidepressant routes

anti epileptics meds i.e. pregabalin / gabapentin

topical opiate / other pain relief potentially like slow release patches if the oral route is the issue

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Hi desquinn thank you for your info I'm sure some people will find it useful unfortunately I've exhausted all these options I just have to try and love with it but I appreciate your suggestions I do use epsom salts but only when I can manage to bathe antidepressantsi was on for many years various types due to mental illness but they proved ineffective and opiates I'm allergic to the adhesive on any patches caused me an allergic reaction because of the adhesive I think I'm just a hopeless case lol.

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it is normally the adhesive on the patches that causes the issues and they use different adhesive on different patches, and there was talk of a sensitive skin version but not sure about this. so if on butrans then fentanyl may work but I am sure pain clinic can advise.

number of different type of Antidepressants for fibro that work in different ways and at different doses for some of them.

sometimes with meds it the application rather than the med itself. taking earlier and starting on smaller doses are some ways that can help in some situations. Honestly talk to or get a referral to pain clinic.

Mindfulness can also help,

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I don't tollorate a lot of meds. It's really difficult getting pain relief or something to help with sleep.

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Gabapentin ? Xx

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If heat helps, maybe an infrared sauna is the way to go. I've had to stop my medication due to chronic kidney disease and the pain is intensifying as the time goes on. Im seriously thinking of saving up and investing in one of these if my renal Consultant says it's okay.

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I had a lot of trouble finding medicine I didn't react badly to but I'm fine with lidocaine patches, have you tried these ?

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I got fed up with trying stuff that made me poorly. Trying to recover after was miserable. It takes so long to get back to where you were when you told the Quack you weren't coping. Would be nice to be able to take something when it is all getting too much. Better though, than masking symptoms, would be understanding what is going wrong and fixing that.

While Fibros meekly take their meds and keep quiet, there is no need to do any more. Also when pharmaceutical companies can claim 'some' benefit for their drugs, people will hope they are the few that might get some benefit. Who quantifies the damage meds do even to those who say they can tolerate it? We know the Dr has to weigh the risks of medication with the benefits of some pain relief. None of this pain relief is free, it all comes with a health cost too.

My pain Dr said I was lucky because I wasn't on a dangerous and pointless cocktail of drugs like so many of his unfortunate patients. He was struggling to encourage people off their meds, as he was convinced that most, if not al,l had long since stopped working. A few days of unbearable withdrawal was enough to convince most patients the drugs were working and they were needed. Sadly for most patients, this is a delusion. Drugs, if they work, work best in the short term. After a while the body simply adapts. Hence doses must be increased. But Fibros, need something ongoing and that kind of relief does not yet exist.

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Hi Al10 I know completely what you mean over the last few years I've tried everything but it either didn't work caused complications or I just couldn't tolerate it a lot of my day takes mind over matter to get through it but with no luck at all with treatments I've adapted my life to deal with the pain and I've mourned for the life and freedom I once had and feel this in particular was a significant thing for anyone thank you for your reply and everyone else too hugs to everyone.

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Hurrah for mind over matter. My GP likes to imagine the pain isn't real or as bad as I say. Indeed over the years, most professionals have. It is only quite recently anyone cares to take fibro at all seriously. Totally messed with my head. What is real I wonder, the pain you can see from a bruise or a cut, or the fibro pain that you can't see? Perhaps none of it is?

There was a faith healer from Deal

Who said, although pain isn't real,

If I sit on a pin, and it punctures my skin,

I dislike, what I fancy I feel. (Nonsense Rhymes Edward Lear)

Oddly, I cope quite well with ordinary pain. If I cut myself it is a bit uncomfortable but no big deal. And the pain goes away. It tells me my pain receptors are working. Fibro pain is quite different to making a fuss I think.

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I too cope fairly well with pain considering with all I suffer with its when something pops up and exacerbates it that I have trouble with a new pain like bumping into door frames or even a sudden headache it just ramps those pain levels up and I can't concentrate on anything other then the pain that's when I find it hard to cope I completely shut down I find myself constantly having to deal with this everyday mind over matter is all I have but I try my hardest everyday not to let it weigh down on me mentally I've kind of trained my brain as it were into believing that I CAN do this not for me though I draw my strength from my kids. Whew I got a bit carried away there lol.

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Individuals deal with meds differently and some find great benefit without side effects and some have no tolerance of meds what soever. A review of FDA meds found that a 1/3rd of fibro meds had a ~35% efficacy on a patient group. So Person A may have to go through Drug 1, 2, and 3 before finding drug 3 works for them. Makes fibro difficult to treat.

Just like fibro is a spectrum so is tolerance of meds, An individual perspective is great but it does not always translate.

"Drugs, if they work, work best in the short term. After a while the body simply adapts."

This would not work for insulin or transplant meds.

Respect what your saying but it is not my situation.

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Exactly. I talk about what I have experienced and those of those I know. If I meet someone who is better with meds without downsides I will likely say. I would love to be positive and spout the statistics given by pharmaceutical companies. We can all be helped hurrah!. I think the statistics are biased and fail too many times to report the down sides. Heck even patients dont report their extra anxiety or depression as a side effect, more it is just then getting more Crazy.

If meds are helping folks, then fine, just stay awake to how your body is coping. Side effects can happen at anytime and too often another medication will be used to fix it.

I was coping fine on meds. My new best friend I thought. I couldn't see how it was biting my backside. So, I had the old meds hangover each morning? That lasted into the afternoon and beyond, but those few hours sleep, or even an hour, wasn't that worth it? To relax my painful body for even a few minutes was wonderful. It helped me cope.

I didn't see how my mood was changing. How my fuse was shortening, tears flowing (when usually they never did), depression deepening and oddly, traffic beeping me and cursing, like they cared they might run over something!!

I'm not alone in how these side effects creep up. Not alone in how it had to be serious before I had to admit I had to get off the meds. And this was a drug that I thought I could tolerate. It was neat and small like me; my friend. After so long suffering with nothing, it was a blessing, I thought.

I will put the other side of meds because someone needs to tell the other side how they they creep up and steal your life. They pretend to be your friend and then suddenly they are throwing you under a bus.

Pain meds and those for depression and nerve complaints work differently to insulin perhaps? A diabetic just replaces each day what is missing with a synthetic medication to balance the sugar.

My understanding is the function of our body vehicle is to achieve a balance. Homeostasis. All systems working tickety boo! In times of crisis we might take a pain killer to get us over a short interlude of pain. A broken leg or achy tooth. We deal with it, fix it, and and soon the pain is gone. no more meds required. With fibro, we don't fix, just suppress symptoms. So the body adapts to let you know there is still a problem unfixed. If the body did not work to adapt, any little thing in the environment might knock us out of kilter.

Like I say, I'm saying what I have experienced and seen. Did you read this article? fibromyalgianewstoday.com/2...

I think it is important that people do let us know about their negative experiences because we do need to keep our thinking heads on even while we take advice from professions. We need to check in to our minds and bodies to ensure we stay safe. Too often it is us sleepwalking into danger. Our caregivers don't even have the time to listen these days and make the connections of our new symptoms. Isn't every fibro anxious, depressed suicidal crazy?

I write too much. I'm glad people can write that they are helped. It gives hope to those who can tolerate meds. But that is not all of us.

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again I would take issue with some of these characterisations. We can suspect bad or profit seeking motives from big pharma and be suspicious.

But clinical trials are designed to allow theories to be replicated in a way that ethics do not come into question and science is moved forward. Reporting of side effects is done in a way that all side effects that happen through a trial are reported so if it happens once in a hundred thousand people then it is reported. Re your gabapentin article it says 1 in 500 for that side effect. Peanut allergy is 1 in a 100.

My OH is on transplant meds that have annoying side effects. if she does not take them then the options are not good either. Doctors balance risk for the individual. They are also a balance over the bug pharma bias that you intimate.

I think your simplification is incorrect.

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Think we each need to weigh up the risks we are prepared to live with. Our choice. being passive means we are too often trust trusting someone under pressure to make a decision. When I have reported side effects my GP has flat out denied they were even possible. With research I have learned my side effects should have lead to a more correct diagnosis,and treatment. instead I'm a neurotic fibromyalgia and time is wasted while I suffer and become more unwell. NICE say this or that protocol is correct so drs may not question this. I'm just saying we need to keep savvy, we are the ones with the time and we care. If I just took my GPS advice I would have made no progress and I might even be dead.

I'm glad others have better experiences but it is luck to find a physician that understands and can help. Be happy to know the percentage of those helped to those who are not. I'm guessing happy customers are busy getting on with their lives? It is those still suffering that hang out on forums and support groups.

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Hi Suebf1983

I am sorry you find yourself in this situation with being allergic to things therefore finding hard to find pain relief. This must be so hard and I can only sympathise and hope someone can help suggest something that may help

I normally would have suggested all desquinn has but maybe this thread might be of interest;

healthunlocked.com/fibromya...

There is no research that this helps Fibro pain and a recent article claiming it 'cures' was pure sensationalism and irresponsible, however the member above has used this product and it seems to be helping although I do notice she is on other medication you say you cannot take due to allergies.

I thought any relief is helpful as it can be so distressing living with it day in day out :'(

If I come across anything else I will comment, until then I sincerely wish you all the very best and hope you do find something to ease the pain soon.

Emma :)

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Thanks mdaisy I'll definitely look into that as I'm not on any meds at all I would hope to notice a difference without the wondering weather it's something else it will be interesting to see if it makes a difference will have to research it a bit first though. Thank you x

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Is it the sort of pain a tens machine would deal with? I used that when I was in labour and it was a breeze painwise

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Hi rebelist45 I wish I could but it's my whole body and I suffer allodynia I can't bare to be touched sometimes. A gentle poke feels like a punch it's horrendous my partner takes it a bit personally sometimes and it's heart breaking when my little one wants to play or just cuddle and i can't because it hurts to much. Gas and air was all I could have with my kids absolutely love it it's the only thing that works when I'm in pain but I don't go to hospital anymore for painI just always felt like I was wasting there time cause all they could do is put me in a quiet corner and give me entenox. Thank you for replying.

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Aw bless you . I can't imagine how it must be not to be held . Xxx

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I to have no success with medication and have tried many types of meds, the next thing I am going to try I. December is lignocaine infusion starting at a dose of 3mg per Kg then 4mg per kg then 5mg per kg, if you have not tried it, I will let you know how this has helped me.

Also if you find that meds have no affects especially from analgesic, have you been tested for ehlers danlos, there is 5 types and one of the types you will have no affect from meds and if when you cut your self you scar quite badly then I would ask your consultant to investigate, good luck wish you better Hun

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I had a lignocain infusion Aug 2016 for me it didn't work,although it seems to have good results for other people ,I'm just one of those strange people! Haha,I hope it helps you blueyrs01

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