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Fibromyalgia Action UK
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Is fibromyalgia real

Hi,

Is fibromyagia real in the sense it can be proven ? Could someone fake having fibromyalgia for years without proof due to the fact there are no diagnostic testings ?

My friend said that there was no evidence for it, and that it mainly occurs in females, those that are poorer, have anxiety/ depression and there is no cure or major improvement.

I take 400mg morphine three times a day, 60mg oramorph six times a day duloxetine 120mg at night, amitriptyline 200mg at night, diazepam 30mg four times a day, ketamine 100mg four times a day, and I am still in absolute agony.

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its real but there is no conclusive test. (same is true for migraines for example)

fmauk.org/prevalence

nhs.uk/conditions/Fibromyal...

Daniel Clauw - science of fibromyalgia shows brain scans with elevated pain activity in people with fibromyalgia compared to control subjects.

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Thank you for your very kind post. My point being - with a broken leg, an x -ray will confirm this. With my condition, I have it because I say I do,

I just wish this condition had better researdh

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yes but this is not new and many conditions are treated on the basis of medical history. Migraines are one example as I said but it is important to make the point it is not you that is saying you have it. It is your doctor (who has trained for many years) that is saying you have fibro.

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Hi there shortandround welcome to our group :) may I just ask is all the medications you have named given to you for fibromyalgia alone or is some of it for other health problems? Have you been diagnosed with fibro for long ? I have had it for 30+years and it is difficult to understand and for doctors to treat but it is real. You may like to take a look at our mother site it has a wealth of information you may find useful :) fmauk.org Please enjoy your evening and we look forward to seeing you on the forum xx

Mo

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Hello,

No the medicines are not prescribed for fibromyalgia.

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No one judged you we were just surprised at the different meds. IF You don't explain then obviously we would think you meant those were your meds for fibro.and some docs do give oramorph for fibro if theres nothing else they can give you due too another illness.

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I'm only allowed oramorph 3times a day 10 mils??

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Who on earth is prescribing it all for you- That's a heck of a lot and could itself be causing the pain you have!

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I wasn’t aware I was to be judged on this site. People suffer from more than one condition. My medication has been sorted by pain consultants/ palliative care pain consultants. I could have cancer/ HIV or other serious illness which means I am at end of life warranting such high doses.

I don’t think my Doctors prescribe morphine for fibromyalgia or at least they said they don’t. So be pleased to get 10mg x 3.

Ketamine is an anaesthetic agent and at low doses a pain killer, it works differently to the opioids and can reduce tolerance.

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Yup all very true, most of us here do have more than the one thing going on - not judging anybody.

You did question and refer to fibro in particular in your post, so logical conclusion was it was in relation to that condition. Multiple conditions do require broadband approach but that is still a huge whack of meds and since you mention you are in bad pain it's possible that combination could be something to look into as the cause if in fact you were referring to fibro. My apologies given if this be related to palative care -that is complete different ballgame to fibro pain meds.

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You do realise in terms of palliative care in theory there is no maximum dose.

People are on syringe drivers, several fentanyl patches, injectable morphine at home. Ketamine and midazolam infusions - all part of dying.

Okay maybe I’m being a bit melodramatic, my fibro pain isn’t great; but the other pain is 80% better:

My point was more :::: look at me I’m on loads of medicines yet my fibro is still bad.

I personally wouldn’t take morphine for fibro by itself and in fact little of what I’m on. More isn’t always better !

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Hi short I really think you should be talking to your medical team, I think most of us are out of our depth with your post good luck.

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Please don't feel you are been judged but with out you saying you was on palliative care and this been a fibromyalgia site it was going to be assumed this was medication were given for fibro which many would find kind of extreme i'm sure you can understand . I am sorry if you are on this medication for the reasons you have stated I feel for you. But It is a huge amount of medication {{hugs}} xx

Mo

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What ever it is that’s causing you so much pain , I sincerely hope things improve for you. No body should have to deal with this. Bless you.

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I did wonder how your still standing with all that?!!

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That does sound like a lot of medication, especially the Diazapam, that's 120 mg. day! I have to beg my Dr for .5mg Diazapam as needed !! And Ketamine??? Which is originally used as a horse tranquilliser , and you say you're still in agony, 😳 Like soppy sokes says it's all those drug that could be causing your problems, take care

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Sorry for the misunderstanding, I assumed you were talking about fibro as you didn't mention any other problems, I myself have several complaints, take care

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Good news if you wer on icb then esa the dwp owe you around 7000 pound.about time they got bit on the ar $-

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Between 2012-2015

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is it me or this is the weirdist post iv seen as for the tablets eh

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I am amazed that you are still functioning with those dosages. Just the diazapam alone seems enormous. Not being rude but are you sure about the amounts ?

As for fibromyalgia being real maybe you should ask your friend about the source of her information. A scientific study or a headline in a magazine ? People just love to have opinions of subjects they k kw nothing about but are controversial. Ignore her.

Dee

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Yes - the Diazepam I get is 10mg and I take 3 at once to make a 30mg dose, which I take four times a day.

The morphine comes in 100mg tabs which I take 4 of 3 times a day.

The ketamine I have to get from the hospital pharmacy monthly, and it’s 4mls which makes a 100mg.

They said something about pregaba something which may help with my fibro but my doctor wants to check with the Hospital consultants first incase it clashes with the Ketamine.

Also said he would refer me for some physiotherapy or exercise in the water which might help my muscles.

They said to make it easier for me I might get patches where I put 3 or 4 on and change every third day to reduce tablets.

Any non medical suggestions for fibromyalgia ?

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I've had two courses of hydrotherapy in the past, which really help, you can move so much easier in water! It's certainly worth asking about. I had to be hoisted in when I first went and by the end I was using the steps, they were only little steps, but they were still steps!

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Medication overuse is proven to cause rebound pain. Sadly learnt hard way. But it’s possible this amount of meds, and doses of them is not only causing more pain but potentially more damage.

Here’s a really good article on naturally healing fibro. All proven- the research is out there.

draxe.com/natural-fibromyal...

Hope today’s a good day for you x

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Epsom salt baths can be very helpful for fibromyalgia, as can gentle massage, and a heated wheatbag or pad.

I am sorry to hear you need so many medications. Pregabalin is the other one your doctor is thinking about.

Best wishes

MariLiz

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Ah, your "friend" is falling prey to a common misconception: correlation is not causation. Basically, just because fibro patients are usually female, poor, and have anxiety/depression, it doesn't mean that those things cause fibro. In fact, it's probably the other way around!

For gender, see this: everydayhealth.com/fibromya... Lots of interesting stuff there, including that estrogen may play a part in fibro, so women get it more often.

Poverty: when someone has widespread chronic pain, fatigue, etc., they often cannot work or have to go down to part-time. Benefits are so skimpy these days that poverty is almost guaranteed. In addition, the DWP itself estimates that disabled people spend ~500GBP extra per month because of their disabilities.

Yup, there's definitely a correlation between depression/anxiety and fibro, but then, that's the case with almost all chronic pain syndromes. Whether they had it beforehand is an interesting question, but suddenly being in enormous pain, potentially losing your job, having your whole life turned upside down, having less financial stability, etc. is pretty likely to cause a lot of stress, which is one of the things that leads to depression and anxiety.

Also, having "friends" tell you that your pain isn't real is probably pretty upsetting!

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