Confused about pills!: Being a retired... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Confused about pills!

Being a retired health professional, I have always considered myself pretty 'savvy' about drugs, but now I am puzzled!

I visited my GP yesterday because my pain levels had suddenly spiralled out of control. I was becoming less and less mobile and was struggling to do anything in the house.

Successive doctors have always advised me to keep my Tramadol usage as low as possible, but this one said:" Well, you need to exercise, but that's impossible if you are in so much pain!"

She upped my dose to four times what I've been taking, and advised me to take paracetamol as well, and to take it regularly - even if I was comfortable. She repeated that I needed to get moving, but also to take a good long rest at intervals during the day.

She was right! I feel so much better, and have managed to go for walks and to do my housework - I even went on a date today (very nice!)

I asked about the problem of addiction, and the doctor said that with chronic pain, that was the least of my problems. She was SO nice - wish they were all like that.

Of course, the next thing you hear is that all drugs are being tailed off, and that we shan't be able to get prescriptions any more, and here am I being encouraged to take mega-doses! Confused, anyone?

28 Replies

That's actually lovely to hear Moffy, what a lovely GP ... Do you want to swap???? .. I am finding the amitriptaline I now take for my fibro is actually making the pain of my arthritis less, but if I can feel less pain do I do more and then find I have made it worse.... My friend who has arthritis in one foot takes pain killers and was running on her treadmill her physio has told her not to do this as she is straining her foot but not feeling it. Confusing.... Very

good luck with the meds

VG x


Very encouraging to hear there are lovely supportive GP's who understand Fibromyalgia and our pain levels. I have a lovely GP, am loathed to change her now we have moved out of the area. I don't think I could find a more supportive Doctor.

So pleased you feel a bit better Moffy, that's good to hear. :)

(((hug))) xxx


p.s. not going to worry about the situation regarding pain meds, so much can change before then. :)


What situation with pain meds what is happening i am very anxious about this as it doesn't sound good????? Della xxx


Hello Della, if you click on the link below, it will explain the situation regarding the changes that are expected next year from the Government regarding our medications -



Thanks,i haven't been on here in a while and feel a little out of touch i'm rather tired and fed up with all the 'changes' from this particular Government! xxx


My pleasure Della, happy to help any time! :) xxx


What a ridiculous idea! Most drugs are addictive, to an extent, as the body becomes accustomed to them, and begins to need them. However, as Moffy's GP said, addiction is the least of our problems. If we can't move about due to pain, surely that leaves us more vulnerable to obesity, diabetes, pressure ulcers, cardiac conditions ... all of which not only cost the NHS (and, hence, the government) a fortune, but are the subject of various long-winded policies. To remove pain-relief and, potentially, antidepressants would cause so much ill-health that the NHS wouldn't be able to cope (even more so that currently). Not to mention the court cases, when those who were previously working sued for loss of earnings, having had their pain relief removed, and the families of suicide victims, who had been coping prior to having their meds withdrawn.

I think, if they actually use the single party braincell for a change, they'll see that this is an unwise, badly thought-out plan, and do a u-turn, like they have on everything they promised prior to election. Makes me glad I didn't vote for them, though - at least it's not my fault! ;) xx


Hi lady moth,

Interesting yes, as co- proxomol which i took for a lot of years but not consistantly, then all of a sudden it was removed.

What was we to do .. Yes we as the people i knew that used it for Arthritis, headaches, back pain and other things.

The Dr's said this was because it was addictive (addictive?! How many drugs are addictive)

Back then i had no solutions and answers to my own problems and i worked in pharmacy dispensing for 8 yrs and various other jobs.

My Dr pretty much has same response as yours with whilst its working use it.

Good old fashioned Dr i did have before advised me that taking

Ie codeine at say 2pm then taking paracetomol 2 hrs later so it stays in your system and does not 'wear off' this was my answer after the past 2yrs or so and like wise if taking Tramadol.

I take Lyrica with co-dydromol this to me next best thing to co-proxomol.

Well if pills are taken away ... Hmmm injections ?!! And do they not try to steer you away and the cost too of it.

So glad you feel much better! Tramadol makes me sick so i have to take prochloparazine too.

Like your Dr said 'correctly' stay as low as possible on strengths.

Also if i miss or have bad days i too cannot do anything even getting to loo is a chore feeding myself if was alone would be Nil, but i have hubby and daughter.

Its also difficult to know when you would need urgent hospital care when Dr's shut as you feel ohh its just a 'phase' it will pass as i do but should we go seek out of hours if feel bed bound? Mines always wkends it seems and scary!!

Thanks for this and i probably gone off what its all about lol.

Some how i think it be a very long time before they stop its those who abuse them need a close eye on.

You get that with OTC and shop like Nytol and others like Solpadeine but you become aware of those.

Xxxx nite note wrk to go tomoro xxx


Last week when I went to put in my repeat prescription online I found a whole list of guidelines as to the way they would now be prescribing various drugs:

"Controlled Drugs Policy Update

Please be aware that the practice has updated its policy for the prescribing of all controlled drugs in line with national guidance.

Drugs for Pain and Attention Deficit Hyperactivity Disorder

e.g.Buprenorphine (Butrans, Transtec), Dexamfetamine, Fentanyl (Abstral, Durogesic, Matrifen), Methylphenidate (Concerta XL, Equasym XL, Ritalin), Morphine (MST, Oramorph, Sevredol, Zomorph), Oxycodone (Oxycontin, OxyNorm) & Pethidine.

Changes you may notice:

· The quantity of drug will be reduced to a maximum of 28 days’ supply.

· You may be asked to switch to an alternative drug or preparation.

· You may be asked to reduce your use of a particular drug, with support from your GP or other services.

· The drug may be removed from repeat prescription if it is only intended for short-term use.

· You may have to see your GP before further prescriptions will be issued.

· You may be asked to attend for more frequent medicine reviews with your GP.

Drugs for Anxiety and Insomnia – additional restrictions to those listed above.

e.g.Drugs known as benzodiazepines i.e. Chlordiazepoxide, Clonazepam, Diazepam, Loprazolam, Lorazepam, Lormetazepam, Nitrazepam, Oxazepam, Temazepam and those called Z drugs i.e. Zaleplon (Sonata), Zolpidem (Stilnoct) & Zopiclone (Zimovane).

Repeated use of these tablets over a long period of time is no longer recommended and patients will be encouraged to reduce and stop these medicines altogether.

As it is recommended that you do not stop taking these tablets suddenly, patients will be invited to attend for review with their usual GP. The dose will then be reduced slowly through a planned timetable for stopping these tablets, to minimise the withdrawal effects which can sometimes occur following long term use of this type of drug.

To ensure a consistent approach, patients will be asked to agree a ‘contract’ for the withdrawal of the drug with their GP. This outlines the planned dose reduction and any rules associated with this reduction. Patients will also be asked to nominate a pharmacy to which all prescriptions will be sent. Prescriptions for these drugs occasionally get lost or stolen, so this ensures the prescription arrives at the pharmacy safely and in time for the medicine to be dispensed.

Please note - Prescriptions for drugs for anxiety or insomnia:

· Will not be replaced if lost

· Will not be issued early.

Under these circumstances, please do not ask reception staff to request a further supply or ask triage staff for a GP appointment, as they will be unable to fulfil such requests.

Further information about any of the details above can be obtained through discussion with your GP."


Hello Everyone, I have read the new directive to aim to reduce the number of patients taking the drugs named above. I know you are all worried this will effect your prescription and the pain relief you may feel you have from these strong opioids. However, the problem with strong opioids and Fibromyalgia is that research shows our receptors in our brain do not respond to these medications. Initially you may have relief but usually after a short period of time you need more to have the same effect.

Please see post by Lindsey in this recent thread about opioids.


Tramadol has been reported to have good efficacy for Fibromyalgia as although an opioid it has a serotonin pathway that increases uptake.

Dr Daniel Clauw and his article Effective Treatment of Fibromyalgia (2007) mentions the treatments he recommends for pain as - Tricyclics, duloxetine (CymbaltaR), pregabalin (Lyrica), gabapentin (Neurontin), venlafaxine (EffexorR), tramadol (UltramR)

I understand your concerns and I hope with the above information will help if this directive affects you , you will have confidence there is other medication that can be used for pain relief of Fibromyalgia.

I hope this helps to reassure you and alleviate some of your concerns

Best Wishes



Phew Emma I take Tramacet (Tramadol and Paracetemol combined) i find it very effective for my Fibromyalgia i also take Gabapentin i was panicking till i read your comment as without these my life wouldn't be worth living and would undoubtedly have to give up work, thankyou Della xx


Hi Della,

I am glad you read the comment with interest

The combination I take after seeing FMS Clinic London under a NHS referral to Prof Davies team are : Tramadol, Pregabalin, Duloxetine & Pramiprexole.

I have personally found this too be quite effective as long as i pace myself and avoid all this winter bugs. Just had Flu !!!

Also have you ever heard of a cream on prescription called Capasacin which is used for pain relief and I personally found it good for pain relief in my legs. I cannot use at the moment as I am worried it may get near our 10 month baby girl. It is made from Capasicum pepper like police spray ! so if by accident it gets near your eyes, it stings lots!

Capasacin cream is known to reduce Substance P , a substance which is excitable when you feel pain. Research has shown that people with Fibromyalgia have 3 times the amount of Substance P than healthy people do. I found it very beneficial and thought I would mention it out of interest. Link below

Best Wishes



Hi Emma i haven't heard of this cream however i have to be careful what i take as i am asthmatic,i do sometimes use Tigerbalm an age old ointment with natural ingredients it is very warming and very soothing! i will ask my G/P about Capasacin Thanks xx


No Worries, I have asthma too and never had any trouble with the Capasacin cream. But as with all medications some may suit one person better than another person. Please keep us posted if you consider trying it and if it is beneficial to you or not .. Take care Emma


Hi I understand I think the reasoning behind the sudden changes as my go said the stronger drugs people were getting them and selling them on to people and also he said my taking just one tablet of clonezapam at night the lowest dose they do... Can shorten your life by 6 months. I said to him i appreciated his concern but would rather live to 89 with some quality of life than live to 90 in agony. I have been taking this extremely low dose of clonezapam for over a year and it still works as well now as when I started...

VG x



I understand completely and I personally have not had any experience of the second group that are benzodiazepines (Clonezapam) or any research on the medication either.

I wonder when this directive will start and I would like to read the research / rationale behind it too.

Might Google it , to see what it comes up.

All the best



how can you possibly "understand completely" if you have "personally ... not had any experience of the ..." ??!!!



Dear Jsue,

That does sound odd, I would like to explain I mean I understand the quality of life point VG was referring to and not the medication VG was referring to.

I hope this makes sense

Many Thanks



thanks for clarifying :)


It's really wierd haw everyone has a different approach to painkilling. I have also read that Opiates do not work with FMS too, as it is a different type of pain and that often tablets like Ibuprofen are useless because there is no actual inflammation. I actually do get relief with Iboprofen, and I think that is beacause I have actual muscle spasms, and the fibro amplifies the pain from them. As far a I know, muscle pain can be relieved with anti inflammatories. True fibro pain on it's own may not respond, but there is nearly always an accompianing physical pain that can be relieved. I suppose really I must have myofacial pain syndrome on top, to get the spasms.

My mother, I believe had fibro, as she had a similar pain and depression pattern to me, and her liver packed up when she was 56 through constant bombardment of drugs, mainly opiates and paracetamol and 400mg brufen (Ibuprofen) 4 times a day, every day, for years. Myself I like to think I have learned from this, and now use physio treatments and similar to reduce my pain. It is expensive though and I still take more painkillers than my husband thinks is safe, but then he does not have the pain.......still a lot less dosages than mum, and I just hope my liver can take it better :-) and I last longer.

I am too on amitryptiline. It seems to take a bit of the spasm out at night, and I know when I am not taking enough (when I try to cut it down) as I feel rubbish through lack of sleep. I tried Gabapentin and it threw me really badly - like a zombie!

The thing is Gabapentin is supposed to be better for fibro, yet it made me worse. Its at times like that when I really wonder if the doctor got it right and wether I actally have something else instead, and not Fibro?

Has anyone else wondered this?



I think there is still so much the Medical Profession don't yet know or understand about Fibromyalgia and or similar conditions so much research is still to be done just because a blood test doesn't show this illness doesn't mean there won't be other diagnostics in the future that will confirm and prove what is going on neurologically etc within our pain ridden bodies Della x



Sorry me again. There has been some ongoing research and studies using results from fMRI. The 'f' stands for functional and basically the participants are people with Fibromyalgia and healthy subjects. All participants whilst in the MRI machine are given stimuli (pinch, pressure etc). The scans from the people with Fibromyalgia had greater areas in the part of the brain for experience of pain. Of course one study is not enough to shown conclusive results but they may be getting there to have a diagnostic test to prove the experience of heightened pain.

I thought you may find this interesting. Please say if I am waffling



So let's imagine the scenario -- you've got anxiety AND insomnia. your Rx is lost in the post or you can't find it. (this did actually happen to me once, many years ago). The new directive tells you "too bad ... no repeat Rx, you'll have to wait it out till next month", because in actual fact the govt thinks you are lying and have sold your filled Rx to drug abusers.

The reactionary stance of the new directive is not helpful for someone who needs the med. And TBH I find some of the comments on this thread highly condescending.



i had my dat time tramadol queried but not my slow release night dose , not worked out why just 1 ? My GP has a list from my consultant of meds i can take i am only on the 2nd level with others having more side effects so i will have to go up to next level if tramadol removed.

i suppose we just have to wait and see as usual


It is so nice wehn a GP listens. Tramadol I have tried in the past but they literally make my skin crawl so I would not take them now if offered. But I think if I was at the point where I could not move I may ask hubby for two of his, not sure xxxxx


Hi all

I am really worried at what is happening at the moment, the government is trying to get people off disability (no matter what their problem) except the ones that are dying (they will only cost a bit until they go) and now I it seems they want to stop the painkillers.

What is going on? or is just me?

This is really worrying to me.

Kindest regards



It's not just you, Terry. I try not to take too many painkillers during the day, as I work with scalpels, so I'd rather not dull my senses too much! But, without opiate-based meds, I wouldn't be able to work, as the higher the pain, the more fatigued I feel, and the less I feel able to move. I also sleep less, so that makes the situation even worse. I think that the problem is, we are being treated by the government as if we are all either scroats, selling our prescription meds to drug users, or imbeciles, who can't work out that taking a medication that may cause addiction, may cause addiction! I don't need babysitting, Mr. Cameron - give me the drugs I need, and I can work out how many to take, when I need to take them, and that the big label on the front with my name on it means that they're only for me. I'm clever like that - I can write my own name and everything. And, come voting day, I can just about manage a big fat X in the box that's not Conservative.

Sara xx

*steps off soapbox, and hobbles away*

1 like

my gps just keep pouring higher doses of drugs at me all the time as am 24 i cannot move at times sstuck indoors in bed which is downstairs as i cannot get up stairs. on morphine tabs diazepam gabarpentin moprhine solution dicoflenac for pain got propanonol for anxiety and ciltopram for depressive disorder i need wheelchair for anymoe 100m of walking with frame/stick i have toilet frame and 4 consultants i cannot stand much more one day sleepy next cant sleep for hours :( it is a mine field isnt it! x


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