I feel like a ping pong ball - Fibromyalgia Acti...

Fibromyalgia Action UK

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I feel like a ping pong ball

Hermes123
Hermes123

Hermes123.

I to suffer from Fibromyalgia along with a number of joint problems over almost 50. years. One has all the treatment, drugs patches but no authoritarian person to investigate further, it's like climbing a ladder? you get half way up and you can neither go any further you cannot climb any further and you are left wondering what will happen if you decide to come back down.

So, there one is stuck in limbo in a hell of a load of pain with it's peak's and through's and being batted, back and forth between Doctor and Physiotherapist. But your still stuck that ladder awaiting someone to come to your aid from crisis. Hermes.

EDIT by Admin: using all caps will make your post more difficult to read.

3 Replies

I found that once I was diagnosed that my GP just says "oh it's just your Fibromyalgia" every time I see/speak to her about anything - which I find really irritating tbh - I landed on the meds I'm still on 18 years later and unless I insist referrals don't happen (and let's face it, most of the time it's just a paper exercise for the DWP/whichever benefits you're on etc.)

Once I was diagnosed, there were no treatments that were viable for me and the consultants I was under all invariably bounced me back to the GP #viciouscircle

It's awful to say, but I have often felt that having anything that can be operated on or treated (even if only a 50% chance of survival) would be preferable to this endless pain & exhaustion with just nothing/no hope, no options. Throughout the London Paralympics, disabled people on benefits were all made to feel that we were just lazy slobs who could do more if we put our minds to it, but it simply isn't possible for most of us with long-term constant pain conditions. I wish it were!

When I was first diagnosed, Fibromyalgia was not a well-known illness & I would literally just say I had a bad back at work to avoid awkward conversations, but nowadays in the area I live in EVERYBODY seems to have it. Unfortunately as there isn't an actual test for it currently (I think I read something was being investigated?) it is also one of the most easily faked illnesses for people wanting to fool the benefits system etc, so those genuinely suffering can sometimes be mistaken for malingerers, who just don't want to work etc & I personally find it extremely annoying to be lumped in with those (/or the people who've never worked a day in their life) when I had an amazing career that I had to give up after 10years of struggling.

I sincerely hope that your own GP is more pro-active than mine, otherwise it seems a diagnosis of FMS is just an excuse to never do anything again unless it's throwing drug prescriptions at me.

Wish you all the best

Life is not all medical. Yes Fibro is Frustrating and painful. Your post did not mention any consultants. Get a referral to a Rheumi. If the GP who sees you says well physio mention Rheumis have more ideas of treatment for Fibro. If you have not sent for a Booklet from fmauk.org do so it mentions certain meds suitable for you. Additionally your GP can be sent a Medical professional booklet. Between then GP receiving their info and you yours there could be some understanding as to what you need.

Gentle Hugs

Hermes123
Hermes123 in reply to skit

Hermes123

Hi skit, With 50.years of treatment behind me, both privately that was when I was working as well as N.H.S. Three months laying on a board on the floor, recommended years ago, the rack where there stretch your body little by little, green lip muscle, radionics, a number of Consultants over the years? with years apart between consultations, lots of x-rays all coming up with new and different structure problems, on a course of 18, various pain relief drugs Doc tells me nothing more he can do on that front, pain managements courses, which feel like I wrote most of them, acupuncture did nothing me hundreds off all kinds of needles over the years, only one scared the living daylights out of me? Acupuncture in the base of my spine, it went a lot better than expected. I have read the books, the medical advances and sciences into these type of conditions. In all my years never been without pain since 1969. when man walked on the moon, I watched lying on a board in a down living room on a small black and white TV. In all my years now 80. in compared with many other serious diseases I have witness leaps and bound in advances towards cures, but pain in joint and muscle diseases move at a snails pace, the neck to the spine seems the worst area to restore the brains electrical signal to restore function, they can now make a GPS. of the functions of the brain, but cannot separate the cord from the nerve to allow restoration of electrical signal to run full length of spine, I fined it unbelievable we could go to the invent computers, yes I know other complex such as rebuilding damage disc's and more, but there will be no gift for me ever being free from pain, apart from walking stick you would never know there was anything wrong with me, its only people that know me on a daily basis know the daily hell I go through. Hermes

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