Any advice or recommendations please

[Fificat50]

Hi everyone

I am new to fibro and have pain everywhere. Just wondering how do people cope with the pain ? My doctor does not know about fibro and what to prescribe so just on pain killers. Any thoughts on best course of action to take re a referral to a consultant and which type please ? Thank you x

[JayCeon]

This is one of the best quick overviews I know & recommend: youtu.be/NnXh9dnzYgE(Not working as expected?)

[saluhouse in reply to JayCeon]

Hi JayCeon. I watched the video clip right through - really informative and funny. Thanks for recommending it. Xxx

[desquinn Partner Volunteer FMAUK Trustee in reply to JayCeon]

entertaining and informative in parts but making some conclusions that perhaps are not there yet. I would be a lot more happy with more qualifiers like can; this could work for you; some have found this useful; for example.

Did like the separation of physical pain and the unintentional pain e.g. emotional pain that you may inflict on yourself. The emphasis on the psychosocial elements that can impact fibro is good.

As with most things take what you can from it and use it if it works.

[JayCeon in reply to desquinn]

Hi Des - I agree fully, of course. I guess the simplification is a good starting point for newbies, but needs a pinch or two of salt.

[Fificat50 in reply to JayCeon]

Hi JayCeon the video is excellent thank you ! I will look for their FB page. So much to think about and do as this really explains everything as I have not yet started on this journey as still undergoing tests. I need to find a good GP but can’t change due to Covid not unless I move. Thank you x

[Louise19691]

I’ve suffered from fibromyalgia since 2012 and went through GP for awhile going constantly about having pain developing. Doctor prescribed Amtripline as I wasn’t sleeping well and had burenorphine patches as pain was getting worse. Saw a Rheumatologist as was having pain in joints and the pain was constant trying to get to the bottom of what was going on . Then, pain Speacialist as a lot of diagnosis was coping with the pain . Most of my time is coping with chronic widespread pain in my body and so need certain pain meds to help deal with that pain . The meds only help to stave off the pain but I still feel pain on and off throughout the day . This can be very testing each day to cope with . Trying to get a diagnosis for Fibromyalgia isn’t easy. But, I would say it’s the pain that needs dealing with and that’s why as referral to pain Speacialist does help to deal with fibromyalgia. Hope this helps Kind regards

Helen

[Fificat50 in reply to Louise19691]

Thank you I need to be referred by my doctor as the pain is constant. He won’t refer me as I have not been diagnosed but I shall try.. x

[hdbrtn403]

Hi Fificat50, I too have suffered with fibromyalgia for quite a while. The medication they prescribed me kinda helped but they caused me to put on weight. So I stopped taking the medication, and I now manage the pain a lot better. Ask your GP to refer you to the pain clinic, Once you have an appointment with them please ask them for a Lidocaine Infusion. Not a lot of GP's know what this is as it's mainly done in the states. It is basically a painkiller that is administered intravenously. It is slowly injected and takes up to an hour to an hour and a half depending.. This is given so that the brain can re balance the pain receptor when it comes to pain... Hard to explain but if you look it up it will explain a little more about it in depth..... Hope this helps.

[desquinn Partner Volunteer FMAUK Trustee in reply to hdbrtn403]

Lido / lignocaine infusions* are used over here quite a bit but are 3rd line treatments so only used when other more normal treatments are used and not found to be of use. However, CCGs in a growing number of areas are withdrawing them from use due to lack of good evidence. However, the suspicion is that it is for budgetary reasons. People are travelling around the UK to access treatment that had worked for them. But it does not work for everyone and as I said you will typically have to go through many other options before getting to this through a pain management clinic.

*same local anaesthetic dentists use to numb your gums.

[Fificat50 in reply to hdbrtn403]

Thank you x

[Fificat50 in reply to hdbrtn403]

Thank you x

[LoneEra]

Hi Fificat

The best person to be referred to is a rheumatologist. They should be able to get a proper treatment plan together for you. In addition, you could ask for a physiotherapy referral - to get some beneficial exercises.

In terms of coping with the pain, there are many different techniques you can try:

- Stretching and gentle exercise

- TENS machine

- Acupressure mat

- Eating a “clean” diet and drinking plenty of water

- Sleep hygiene

- Mindfulness and hobbies

- CBD oil

Please feel free to ask any questions about these if you would like more details xx

[Fificat50 in reply to LoneEra]

Thank you x what does a tens machine do please ? What is an acupressure mat please ? And best site to get CBD oil from ? Kind regards x

[LoneEra in reply to Fificat50]

No problem at all. Good questions!

So a TENS (transcutaneous electrical nerve stimulation) is a little machine with sticky pads that go on your skin in places where you’ve got pain. The NHS website explains it like this: “small electrical impulses are delivered to the affected area of your body, which you feel as a tingling sensation. The electrical impulses can reduce the pain signals going to the spinal cord and brain, which may help relieve pain and relax muscles. They may also stimulate the production of endorphins, which are the body's natural painkillers.”

Not everyone finds them useful, but personally I do like my TENS. It helps distract me from the pain. You can buy them on Amazon for about £25.

An acupressure mat was recommended to me by my physio who specialises in fibro. It is basically a way of getting a massage and a sensation a bit like acupuncture (without the needles) while at home. The mat is covered in plastic ‘nubs’ that you lie on (or stand on if you’re brave) and it essentially releases tension and helps relieve pain - in theory.

Again, not all people find them helpful but you can get one on Amazon for about £18 - and it could be worth a try!

I’m only just starting on CBD oil myself so will let other members come back to you on that one.

Hope that helps xx

[Flyby7]

I have Fibromyalgia for about 10 years i am different med it helps and I am on a cream to puy on my legs arms chest to stop a sting itch and sensitive

[Yassytina FMA UK Volunteer]

Hello and welcome, I see you have had some helpful replies so far, yes the aches and pains of fibromyalgia☺️ You will properly read the trials and errors from members trying out medications that either suit and help with pain or some find ways of coping without . I still use the pacing method everyday as resting through and taking little breaks during the day differently helps me, I am on medication duloxtene that takes the edge off , I do also find rub in gel helpful( bio freeze ) always check it’s safe to use if on any meds with pharmacy or doc)warm baths to relax muscles is a must for me with some Epsom salts. I m never without my 2 trusty hot water bottles as lower back/shoulders blades are troublesome. I hope you find the forum helpful.

[Fificat50 in reply to Yassytina]

Thank you for naming your medication and other helpful tips. I shall be using this forum as so helpful with wonderful people x

[dinkic]

I don't always cope well despite doing all the courses etc. I would ask for a referral to a pain specialist they approach things differently. Hope you get some relief soon.

[Fificat50 in reply to dinkic]

Thank you I shall ask my GP x

[Beth-fidget]

I found nothing beats hot soak, I tired many painkiller but nothing worked. So I live in Bath when I'm home.