I’ve just been diagnosed with fibromyalgia, no real surprise but I’m quite isolated and don’t feel I have anyone to talk to!
Fibromyalgia
- Thread starter alimar77
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No surprise or not, getting an official diagnosis of anything shifts the world a bit. And it can make you feel alone too!
If you want to talk, go right ahead, we'll listen.
I understand the NHS is in chaos but my GP surgery still refuse to allow patients to book face to face appointments! I filled out the form today and specifically asked for a face to face appointment, and all O get is yet another telephone appointment, always inconvenient as, as a carer I’m normally with the patient I am caring for so can’t talk! I’m sick of it.
I’ve waited 7 months for an appointment with rheumatology and feel there you go another label and discharged! I give up!
I’ve waited 7 months for an appointment with rheumatology and feel there you go another label and discharged! I give up!
JAT1
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People to talk to is another great thing about this website. Every day there are many members online ready to listen, offer ideas, and sympathize. I am also isolated, for a different reason though. In fact my time on this website is the only "social time" I have, other than asking the grocery check-out clerk how she is today.
JAT1
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If you want to win never admit defeat, as the saying goes. I'm not in NHS territory, but I certainly found out, especially since covid days, that we have to take responsibility for what we do about our health. The medical professionals advise and the patient decides. Fortunately, Dr Google helps if you can deal with conflicting information, but even the uncertainty over what is information or misinformation and all the mistruths in between is useful for putting a matter in perspective.
Hi I’ve had fibromyalgia for well over a decade. It is a lot to get your head around. If you ever need anyone to talk to I’d be more than happy to listen
Thanks everyone. I am going to start putting myself first, definitely something I never do!
First though, I’m going to operate on myself and remove my own gallbladder something else the NHS has been fobbing off about for years… Now where did I put the electric saw…
First though, I’m going to operate on myself and remove my own gallbladder
something else the NHS has been fobbing off about for years… Now where did I put the electric saw…Oh self operations that could get interesting.
On a more serious note it would be interesting to see research being done on telehealth vs face to face appointments. I much prefer face to face and for me find it much more beneficial. I am lucky that only one of my endo appointments was ever changed to a telehealth.
I do have an upcoming year later review of the DAFNE course i participated in and I’m kind of bummed its been changed to an online meeting. I got alot out of DAFNE mainly by meeting other T1Ds Face2Face.
On a more serious note it would be interesting to see research being done on telehealth vs face to face appointments. I much prefer face to face and for me find it much more beneficial. I am lucky that only one of my endo appointments was ever changed to a telehealth.
I do have an upcoming year later review of the DAFNE course i participated in and I’m kind of bummed its been changed to an online meeting. I got alot out of DAFNE mainly by meeting other T1Ds Face2Face.
Jo_the_boat
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My wife has fibromyalgia.
Hers come and goes and she seems to get discomfort cropping up in random places. There doesn't seem to be any logic to it.
She saw a neurologist who was very considerate and gave her detailed a explanation of his take on it. She was offered medication (Gabapentin) but decided not to take it because she has had other conditions with which it may react.
She really just takes painkillers and the pain subsides in time. Ultimately it doesn't really stop her doing things. Whether there are differing degrees of severity, I don't know. That's her personal regime and she manages it stoically.
It's nonsense that you can't at least get to talk to someone about it. This lack of basic care exacerbates things unnecessarily.
Good luck with it and I wish you well.
Hers come and goes and she seems to get discomfort cropping up in random places. There doesn't seem to be any logic to it.
She saw a neurologist who was very considerate and gave her detailed a explanation of his take on it. She was offered medication (Gabapentin) but decided not to take it because she has had other conditions with which it may react.
She really just takes painkillers and the pain subsides in time. Ultimately it doesn't really stop her doing things. Whether there are differing degrees of severity, I don't know. That's her personal regime and she manages it stoically.
It's nonsense that you can't at least get to talk to someone about it. This lack of basic care exacerbates things unnecessarily.
Good luck with it and I wish you well.
I agree there are many differences in Fibromyalgia, I know some people who seem fine and some who can barely function. I’m in between. It comes and goes in flares and I find Naproxen helps manage my pain alongside some Zapain. I have tried many of the others meds but pregabalin and gabapentin both increased my appetite, a common side effect. And SSNI’s like duloxetine sadly affect my sleep as do most modern antidepressants. The only thing I’ve not tried is amitriptyline as it’s good for sleep and pain but also risky in overdose, but I hope to try this.
I am guessing I’ve had fibromyalgia for several years probably caused by a back injury many years ago, but it’s been manageable until the last two years when my pain has become very difficult to deal with when it flares up.
Sadly staying at home when I’m back is not an option as I’m a carer for someone else, so it’s a case of suck it up and get on with it, but admittedly some days after I’ve visited my dad, I’m too exhausted to tackle jobs in my own home!
I also find a heat pad helps, bought a great one from Amazon!
Hi there
Fibro is weird. And depends on whether it is primary or secondary. Often it is a result of chronic pain from an injury. Hence secondary.
It usually comes with chronic fatigue so be aware and don't stress out your body.
I've had it for over 20 years since diagnosis,but getting it diagnosed back then was a pantomine. 2 years of tests from brain tumours to cancer to whatever they could think of next. Mainly my blood results were all over and didn't make sense.
Some days i struggle to get out of bed from fatigue. Evenings i struggle to out for social activities past 9pm.
Pain is random. Your brain has been rewired to misunderstand sensations.
Loud noise can hurt especially in restaurants.
I also have restless legs or restless body and can have bad nights where i cant sleep but wander or read or...
All these are typical fibro.
But others have other symptoms too.
It is best to read a book eg Fibromyalgia for Dummies. Or living with Fibromyalgia. Helps family to read these too.
Hope this helps a bit. Do say if you want to know more.
Ps. I take all the drugs. And yes thry help you put on weight. But swings and roundabouts...
Fibro is weird. And depends on whether it is primary or secondary. Often it is a result of chronic pain from an injury. Hence secondary.
It usually comes with chronic fatigue so be aware and don't stress out your body.
I've had it for over 20 years since diagnosis,but getting it diagnosed back then was a pantomine. 2 years of tests from brain tumours to cancer to whatever they could think of next. Mainly my blood results were all over and didn't make sense.
Some days i struggle to get out of bed from fatigue. Evenings i struggle to out for social activities past 9pm.
Pain is random. Your brain has been rewired to misunderstand sensations.
Loud noise can hurt especially in restaurants.
I also have restless legs or restless body and can have bad nights where i cant sleep but wander or read or...
All these are typical fibro.
But others have other symptoms too.
It is best to read a book eg Fibromyalgia for Dummies. Or living with Fibromyalgia. Helps family to read these too.
Hope this helps a bit. Do say if you want to know more.
Ps. I take all the drugs. And yes thry help you put on weight. But swings and roundabouts...
First, I'm sorry about the issues of getting to see someone. But we are always ready to listen.
My fibromyalgia was only diagnosed after I made enough fuss to get referred to the hospital pain clinic. Difficult to do as getting fobbed off with invisible illnesses means that takes me a lot of courage.
They were very good and tried out a couple of treatments, but now I'm back with GPs who never check how I'm coping or my pain meds unless I ask for a change - I manage my own condition.
One thing I found useful, at a time when the NHS and DWP were pushing pacing (ie pacing as pushing yourself a little further each time, not a good idea), is the spoon theory. It is used to explain your limitations to others.
Although I found I can borrow tomorrow's 'spoons' with a mix of coffee and willpower I don't recommend it as the crash is that much harder.
Now I'm retired I can book bed days in my calendar, to follow any day likely to be tiring. I spend the bed day in my pyjamas and only get up to feed the cats and myself.
The other thing to think about is that having a fluctuating condition can be like going through the grief cycle over and over. The shock of diagnosis fades but adjustments take time. Don't let people telling you that you look fine minimise your own experience.
I've started using the newly emerging label for Fibro and CFS/ME - Energy Limiting Condition (ELE). It doesn't cover the pain but helps to support me when I have to cancel things.
My fibromyalgia was only diagnosed after I made enough fuss to get referred to the hospital pain clinic. Difficult to do as getting fobbed off with invisible illnesses means that takes me a lot of courage.
They were very good and tried out a couple of treatments, but now I'm back with GPs who never check how I'm coping or my pain meds unless I ask for a change - I manage my own condition.
One thing I found useful, at a time when the NHS and DWP were pushing pacing (ie pacing as pushing yourself a little further each time, not a good idea), is the spoon theory. It is used to explain your limitations to others.
Although I found I can borrow tomorrow's 'spoons' with a mix of coffee and willpower I don't recommend it as the crash is that much harder.
Now I'm retired I can book bed days in my calendar, to follow any day likely to be tiring. I spend the bed day in my pyjamas and only get up to feed the cats and myself.
The other thing to think about is that having a fluctuating condition can be like going through the grief cycle over and over. The shock of diagnosis fades but adjustments take time. Don't let people telling you that you look fine minimise your own experience.
I've started using the newly emerging label for Fibro and CFS/ME - Energy Limiting Condition (ELE). It doesn't cover the pain but helps to support me when I have to cancel things.
