A light bulb moment !: Hi guys not... - Fibromyalgia Acti...

Fibromyalgia Action UK

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A light bulb moment !

49 Replies

Hi guys not doing great itchyness to much along with pain but I have had a light bulb momment I've been itching since takking amitryptline been on it 4 weeks now however doc told me to stop codeine that's my pain medication so I'm now itchy and in pain he thinks it's codeine but I've been on it 3 years so it's got to be the amitryptline wat u think ???he Diddnt think of that he told me to stop naproxen I've never took it in my life so maybe he has brain fog were our own doctors ??love to I all keep solidering on sorry to keep posting I'm just new to all theses crazy Symtoms x

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49 Replies
Painny profile image
Painny

I have been told by our fishmonger who suffers from fibromyalgia that Amiript...brings along itchiness, Xx

in reply to Painny

Thank u so much Shame your not my doctor x

Painny profile image
Painny in reply to

😀🤩

Hi

I think you should stop the amitriptyline but you should ask your dr's advice. Take care Lynne

in reply to

Hi hunny I was fine on zopiclone and co codamol but Rhumatologist put me on amitryptline and stopped zopiclone so il speak to doc I no there under immense pressure but my doc should of known this he's so unhelpful bless his heart xxxx

in reply to

Yes, he should listen to you. Take care and stay safe Lynne xxxx

Roselil profile image
Roselil

So sorry, Lauren. I suffer with all over itching frequently. Still find that aloe vera gel is the best help for me.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

If you cannot get a GP then call your pharmacist. Do not stop them without talking to health professional and you can have side effects from stopping them without tapering.

Also I think it would be unlikely to them as they are actually used to treat itchiness in people.

would rather take advice from a pharmacist than a fishmonger :)

in reply to desquinn

Hi doctor told me to stop codiene but I can't see how that could make me itch I've been on it 3 years I've only started to itch last month so it's either amitryptline or fibromyalgia I won't just stop bit I hope itchyness will pass x

Painny profile image
Painny in reply to desquinn

Personal experience of people do matter 😷😼

in reply to Painny

Yes sometimes even more than the pharmacist the amount of those I've asked and they don't know or have never heard of fibromyalgia!!xx

Painny profile image
Painny in reply to

So true Lauren, even older doctors don’t know about it plus science is based on facts and facts come from patients. Look at Coronavirus! scientists are struggling and still trying to collate information/data from those affected. My fishmonger said this is the only side effect i.e, itchiness from this med, I don’t like anyone upsetting my fishmonger, his fish are always fresh 🤣🤣

I am wearing the mask of life at the moment and keep telling PAIN go away , keep safe and hope all get sorted out for you xx

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Painny

Novel Coronavirus is new and they know more facts now than they did a couple of months ago. They are following established methods on the shoulders or previous research. 4 months in virus research is like the first day of your fishmongers apprenticeship when he was sweeping the shop!

I would love to ask him about his salmon but his view on drugs and reactions not so much.

Painny profile image
Painny in reply to desquinn

🤔🤔🤔🤔🤔😷😷😷😷🤐🤐🤐🤐🤐

in reply to desquinn

I think ur bee I'm the bonnet is getting a little out of control now the person in the fishmongers had a reaction to medication or may of just been the fibromyalgia our Symtoms and reactions are why doctors have a job to treat us and I'm glad painy shared that with me were all on here to discuss Symtoms that's why it's called the fibromyalgia forum I hope the fish monger joins our forum 😉

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

Hidden - the bee in my bonnet is about good info from the correct sources. Itchiness could be from many things like the scales of a fish or urticaria. But asking people to not take medical advice from a fishmonger and speak to a pharmacist who will be an expert in medication does not seem too unreasonable.

It is the Fibromyalgia Action UK forum to support people with fibro and we take an evidence based and expert led approach to support like medical professionals would. Peer support would be good but when someone is leaning towards stopping a treatment based on anecdotal evidence then it is correct to intervene even if it is unwelcome.

Especially when stopping that treatment can have negative or severe consequences.

Info is given with the best of intentions and aimed at helping you and others. If this is my been in the bonnet then I am content with that. Take care.

in reply to desquinn

😬I get what your saying but the fish bloke only stated he's reaction to the medication I've not contacted him privately and asked him to be my new gp or to leave the fish monger a and become a pharmacist 😉😘😘u gotta laugh it's become a Chinese whisper this thread now I suppose people will start commenting on covid because I said Chinese God save our queen xx 🐟🐟🐟🐟🐟🐡🐡🐡

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

I appreciate the farce aspect of it and it does amuse me but as long as you are following advice then that's the main thing. I know pharmacists are providing over the phone help at this time as well.

This may be of use as well but I have no experience of it at all - askapharmacist.co.uk/

in reply to desquinn

Yes I do get it of course x

Vertigo92 profile image
Vertigo92 in reply to

Maybe it is nothing to do with fibromyalgia. My husband has type 2

Diabetes and frequently gets a very

Itchy skin due to his blood sugar levels.

Perhaps you should have a blood test.

Good luck I hope you find an answer

.vertigo

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

But they know the drug and the body. Personal experience is a single data point. Clinical trials and pharmacy experience is millions of data points.

Personal choice is always your own even if it is not well informed or wise.

in reply to desquinn

Could u tell me the Patrick swazey story please ?x

in reply to

Such a sad end to a lovely man's life😔xx

You've done so we'll I'm sure it will pass I'm using aquenous cream x it does help x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

It can affect us differently but then why are we on here looking for common ground? The professionals are there for a reason and they are the first port of call when making a change to your treatment. Stopping taking something in the wrong way can have very bad and unintended consequences as you know. Sometimes it is the approach rather than the choice like tapering or just being methodical in what choices to be made.

I am responding to this thread more as a general pointer than the individual decision. You should not listen to me as I am not a medical professional except to go and listen to one of them!!

in reply to desquinn

And on the amitryptline leaflet it says itchyness not known so to hear some one personal go through it makes sense it's all trial and error some times personal experience is better to relate to xx

I agree x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Personal choice is always going to be the individuals but it can be wrong. Many stories of people following their gut and paying for it. Herbal cures for cancer always makes me shiver and the patrick swayze story.

I will also be giving what we believe is the best guidance on how to go about things. Seek the advice, become informed and then make a choice. Do not guess or take risks.

in reply to desquinn

My doc hAs told me to stop codiene incase it causes itching now I can't get out the bed most people would say go back on it who do i listen to the doctor and be bed bound or people ?xxxxx just asking

Patdoyle profile image
Patdoyle

I’m on amitryptaline but had the itchiness before taking it. I read the leaflet last night but itchiness wasn’t on it unless I missed something. About every other symptom was on it! Don’t just stop taking them before you speak to your GP.

Hi pat I won't just stop in on 10 mg at night I'm meant to take 20 I don't like the drug but I have to take it to sleep being honest the pin pricks and itchy burning feeling is just fibro I think as so many of us itch xx

No he's not and I really can't function my brain is consumed x

in reply to

I think it's fibromyalgia the itchiness I can't see how after 3 years of taking it I would itch xx??? Wat u think mr z

Tedy profile image
Tedy

Just a thought, for what it's worth! Have you had your liver checked out? P. B. C can cause itching.

in reply to Tedy

Hi liver kidney fiction one month ago was all normal no action x

in reply to Tedy

Now I'm scared ?!!!

StevieGG profile image
StevieGG in reply to

Lauren I could be something you have eaten that is causing the itchiness?? I suffer with fibromyalgia and have found that my ability to tolerate certain foods, smells, fabric conditioner, detergents, bath products changes on a daily basis, I make sure I always have a box of antihistamines by my side and they really do help with the itching/reaction. I find it unfair your g.p has left you without pain medication and I hope he weaned you off the codiene? Suddenly stopping after 3 years of taking it would have left you with awful withdrawal effects. I would give the surgery a call and just ask if the g.p can put you back on the pain meds due to the fact it is leaving you bedridden. I am prescribed amitriptyline to relax my muscles so it helps my pain meds work easier and quicker. If you needed a sleeping tablet, there are plenty others he could prescribe to you. Between the two disagreeing about the fish monger!!!! I do think there is good and bad in both, firstly if you are having a severe reaction to anything, it would be a good idea to stop taking/eating/using whatever you think caused it! We are here to share experiences just as they do with a drug trial.......they note each persons experience which is how they decide if a drug is safe and what if any the side effects are, this is done long before the drug reaches the hands of the prescriber or pharmacist.......even they have to still read the mims book of drugs before prescribing a lot of the time. Good luck x

in reply to StevieGG

Thanks mate appreciate it I have gone back on the codiene I take 2 or four a day the itching is fading slowly I am now out of bed still slightly itchy I believe it's the fibromyalgia and the stress with home schooling my 3 and not working makes my Symtoms worse thanks for your reply xxxxx

StevieGG profile image
StevieGG in reply to

Not that I want you to have to take meds(because in a perfect world you shouldn't need them) but I am glad you are taking something to try ease the pain. I hope the itch has itched itself off now. (Still maybe try antihistamines though if you start itching) The one thing that sets my fibromyalgia off more than anything else is stress! Don't push yourself or the kids too hard they will still go through all the curriculum once they are back at school. The work is to just prevent them from being bored and to stop their brains shrivelling up. If you had have wanted to be a teacher I'm pretty sure you would have worked towards being one hehe! 👩🏼‍🏫👩🏼‍🎓🤭. (The schools and education authority know that over 50% of children don't receive any assistance with school work). Take deep breaths and smile 😀 stay safe and well 🌈🤗 x

E3178 profile image
E3178 in reply to StevieGG

Hi, you mention problems with food and certain cleaning products. Is this something to do with salicylate sensitivity? I am currently looking into this myself.

StevieGG profile image
StevieGG in reply to E3178

Hi E3178, I don't come on here all the time so have only just seen your reply, I have never even heard of that but after just having a read about it (thank you for bringing that to my attention) every symptom, fact etc sounds just like what I suffer with (do you have the same issues??) Once this horrendous pandemic stops destroying so many people's lives, I am going to make an appointment with my g.p to discuss salicylate sensitivity. I hope you are safe and well 🌈🤗 x

E3178 profile image
E3178 in reply to StevieGG

Hi, I doubt your doctor will know much about this. Most dismiss it because they probably wont have studied it.

I just read and research where I can and try to follow the various advice from the web.

I knew I couldn't tolerate aspirin years ago and it's taken me till now to begin to accept that lots of salicylates upset me.

Tedy profile image
Tedy in reply to

No Lauren, that wasn't my intention, sorry. Just you can't treat something without knowing what you're treating 🤔 I've had P.B.C for 20 years and I'm ok, still here. Please don't be scared, that won't help you and that was all I was trying to do, help 😘

in reply to Tedy

That's ok tedy my function tests are all normal liver and kidney xxxx

in reply to

It's the fibro Lauren! Many of us get it, check it out with your GP but do T go getting in a panic xx

in reply to

Yes it must be the fibro it comes and goes xxx

Thanks xxxxx will check it now

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

that tells part of it but he decided to withdraw from traditional medicine against medical advice and was encouraged to try a herbal remedy from what I remember.

Bacaloca profile image
Bacaloca

I've been on Amitriptyline for 7 years, no problem with itching. Doc put me on codiene, itching sent me crackers, stopped the codeine, itching stopped.

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