Paingone: Hi everyone, Just wondering... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hi everyone,

Just wondering 2 things.... (I know, how greedy am I ?!?)

1. Has anyone tried the "Paingone" pen...

If so... Did it work for you? Or was it just a gimmick? My husband looked at it and straight away said "it's a quack thingy" like not really helpful and just there to make them money... I have a lot of pain in the triangle part of my hand between my thumb and forefinger... It seems fibro is again trying to take away one of my few joys left, crochet... I thought maybe the pen might help there?

2. Was everyone sent to a rheumatologist after they were diagnosed? I mean they know I have some in my neck (scans before diagnosis) but a person I used to work with has rapidly ( in the last year!) had back pain and gone to operations and a diagnosis of fibromyalgia in a year! Which seems crazy because I have been trying to get help since 2007...! So she is going to me "if you had it really then they would send you to a rheumatologist straight away!! You don't have fibro I don't know what your doctor was thinking"

Has EVERYONE been to see one? Am I just not worth sending as they know I have problems anyway or..? I am so confused and upset... I thought I finally had a diagnosis, all be it not the best... And I've been telling people that the pain consultant diagnosed me with fibro...! Last time she was referring to "your fibromyalgia" so... Idk just feeling a little rattled....

Thanks in advance for any comments

Starrie x

24 Replies

Hi Starrie

My GP sent me to the pain clinic at my local hospital I was seen my a Dr there & he suspected I may have Fibromyalgia, (I had never heard of the condition before then) this was after I had already been diagnosed with various other health conditions, he sent me to see a rheumatologist & I have got Fibromyalgia as well as the other conditions I had already been diagnosed with. :-(

Regards Jay

Starrie in reply to jayjay57

Ohh ok so the rheumatologist just confirmed your fibro.

Thanks so much for your answer

:) hope you start to get the right treatment and have more good days

Starrie x

Hello Starrie

Your GP can diagnose you with Fibromyalgia.

A Rheumatologist is a specialist in Fibromyalgia and so you'll probably find that quite a few members of the forum have been referred to a Rheumatologist, if their GP is unsure.

Increasingly a Neurologist can also diagnose Fibro.

The unfortunate thing with Fibro is that there is no set way that Fibro needs to be diagnosed.

Your "friend" in my experience was incredibly lucky to get a diagnosis so quickly.

Many of us on the forum have waited years, some decades to get a definitive diagnosis.

I am guessing a lot depends upon the knowledge that your GP has of Fibro.

I was diagnosed by a Rheumatologist but know quite a few of our members have been diagnosed by their GP.

Fibro does not show itself in a set way to each person. That's why so many other illnesses have to be eliminated before a diagnosis can be given.

Please don't allow this person to rattle you. If you feel that you'd like to see a Rheumatologist, it could well be worth a discussion with your GP?

Fibromyalgia does not show up on scans and does not affect just one or two parts of the body.

If you'd like to ask me anything else, please let me know. I'm not a specialist or doctor but I have had Fibro, Chronic Fatigue, HMS, depression etc, etc for over 30 years.

Wishing you calmness and peace

Lu xx

ukmsmi4 in reply to BlueMermaid3

I'll second everything you say Lu.

In my case my GP had already diagnosed me with ME so it was no big leap for her to confirm fibro as well five years later.


Starrie in reply to BlueMermaid3

Thank you Lu!

That was very helpful, the pain consultant along with my neurologist diagnosed me. So I guess they were both sure! :)

She really did rattle me... But I know that fibro can be different for everyone. I guess I'm a little insecure, and she never outright said "you have fibro" so... Yeah...

Woo! Thank you and to everyone else below who has commented

Starrie x

Hi Starrie

I was finally diagnosed with ME around five years ago (after a long battle to make sense of my deteriorating health) by my GP. She referred me to a specialist clinic in Bristol who confirmed I had a "clear cut classic case of ME". Amazing. If it was so clear cut why the heck couldn't all the other GPs see it. Nope only one GP and the ME clinic.

Then last year my pains started getting much worse and because my GP is sympathetic to these conditions I actually put it to her that I thought I now had fibromyalgia, did she agree. She asked me questions and did pressure point tests and then agreed yes she thinks I also now have fibro. She didn't initially refer me to anyone. Though later last year I got that I'm not coping with the pain so she agreed to refer me to the pain clinic. I had to ask for this referral but she didn't hesitate to agree. My appointment is next Tuesday so I don't know yet if I'll be referred to a rheumy from there, but as yet I haven't seen one as my GP is quite satisfied that is what I have.

I have a sister who has had ME for over 30 years and her own husband has had fibro for about 15. My GP, the clinic and myself all think I've probably had undiagnosed ME since a serious bout of bedbound flu in the early 90's. I think between us we know enough about the condition(s) to be as certain as you can be that I have both. Luckily for me my GP is one of the few understanding and sympathetic believers in the medical profession. Yet she is still hamstrung by the fact that as an NHS doctor there is very little she can offer me.

It will be interesting to see what sort of response I get from the pain clinic as it seems treatment very much depends on whether your particular practitioner believes in the conditions, whatever their own speciality is.


Starrie in reply to ukmsmi4

Please let me know how it goes, I was offered a pain clinic, but I chose to stay with the private pain consultant. I only was diagnosed by going thru 3 separate physios and I am over sensitive to touch so you can imagine how they went down. But the neurologist said I had to try physio before I could see the pain consultant.

Starrie x

ukmsmi4 in reply to Starrie

Will do.xx


Hi there, I bought one of those pens about 20 years ago. Back then it cost me £60 which was lot of money then still is.

I could not use it with out help in the back area. It was hard on the hands even after trying to click it just a few times in areas where I could reach. For me every click and shot of the pen was agony way too painful to use it was atotal waste of money. I would say if your oversensitive to touch and you don't have help keep your money in your pocket or invest in a tens machine this I would endorse. I hope the feed back helps. Others may have a better review on it


Starrie in reply to Dizzytwo

Thanks Mo,

That's helpful :) I can have one to try for 30days free so I am going to give it a go :)

Hi, I've never been referred to a Rheumatologist. I was diagnosed by a newly qualified Doctor that was visiting my surgery whilst waiting for her permanent job. I was very lucky as most of the doctors in my practice don't understand it!

The lady who spoke to you is in correct not everyone sees a Rheumatologist!

Sorry don't know anything about the pain gone pen, but I'm sure if it really worked many more people would have let others on the site know about it!

Think your husband might be right on this one!


My GP diagnosed me as having fibro after a physio told me she thought I had joint hypermobility syndrome. He disagreed and did loads of tests, on top of ones done by another GP, who I'd seen before the physio. He offered me the chance to see a rheumatologist but given my past experiences of consultants (told I had arthritis in my shoulder, then not, then arthritis, then not and so on over about 8 years, 2 hospitals and 5 or 6 consultants until I was told it was chronic pain and given a nerve block at a pain clinic) and what a rheumatologist might do (nothing, or mess about with the meds that took a while to get OK) I decided there was not much point going for a referral. My GP is very up to date (a partner at a training surgery) clued up about fibro (I had no idea) and involves me in decisions about my treatment, so I trust his advice. Which is more than can be said for some other staff at the practice - who could do with winding their neck in!

Anyway, bottom line - you may or may not benefit from seeing a rheumatologist, as some will diagnose fibro and just refer you back to your GP for management. It's questionable whether possible fibro patients should even be referred to rheumatologists any longer, as it appears to be a neurological condition. This very question is now being debated in medical publications (I'll find the link again if I can). I'm not a doctor but I've studied medical sciences and done my research since being diagnosed, but like everyone else my comments are just my personal views.

Thanks, scientisty,

I appreciate that and I would be interested in the research because I was confused as a lot of my problems are nerve-related...

Starrie x

I've had a look for it, but I think I need tube at work, where we have access to paid journals.

To start your research though, put "Google scholar" into Google and then use the link to Google scholar. It's a search engine specifically for published research. Just be mindful that you might not always like what you find out.

Thanks for the tip :) I will x


They have these on offer at my local chemist there on the counter to try free my hands would not press the pen or I would have spent £20 on one

I have a great GP and Diabetic consultant. My Rhemetologist not so good as he doesn't believe fibro exists! After loads of tests an ulnar nerve operation and caporal tunnel operation and deteriorating health my GP wrote a letter to ask him to confirm my fibro, my wonderful diabetic consultant had a word with him and I wrote a letter of complaint I received a two sentence letter from him confirming I had fibro! I have never seen him again nor want to there is another Rhume at the hospital who is far more open and forward thinking. However I'm not convinced it shouldn't be a neurologist who assesses us or part of the consultation team as so much is connected to nerves and the brains confusion over pain messages. I heard somewhere that three to four years is the average time to get a fibro diagnosis which is shameful.

Hi Starrie

I have a MediPen which I presume is similar. It is a liquid inhalant cbd and it works quite well for me.

I think that you are an amazing and wonderful person who is worthy of seeing a Rheumatologist so please think more positive about yourself. I have not been to see one as I was diagnosed in the private sector and took it from there.

I want to sincerely wish you all the best of luck.

All my hopes and dreams for you


Starrie in reply to TheAuthor

Thanks Ken :)

I used the paingone pen successfully for many years before my fibro diagnosis. Now unfortunately it is of no use to me. For a start I would have to click all day long since pain appears randomly on my whole body! Also the repeating action of clicking is now impossible with having Osteo as well.

If your trial pen helps feel free to pm me and I will send you my redundant pen free of charge. Good luck. Xx

Starrie in reply to ursi

Thanks so much for that kind offer Ursi :) I am getting on good with it! It's perfect for my hands where I can't put the tens machine!

Starrie x

I am so pleased for you😊

Please dont buy the pen though. I would love to pass it to you as its a shame to just be stuck in a drawer. Xx

Starrie in reply to ursi

Thanks Ursi I will PM you x

Hey starrie

I don't suffer from fibromyalgia but I do use my paingone on my arthritic knee. It does help and it takes the pain away for about 2-3 hours. I have written a review on my site and I would be glad to answer any questions you might have, here or just drop me a message :)

~ James

P.S.: Here's my site if you wonder:

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