Fibromyalgia and Work & more

[hope23]

so if meds are unavoidable I'd rather suggest trying amitriptyline/Elavil even tho it's not approved, because studies say it's comparably effective to the first two

The other factor in regards to amitriptyline is the alternative nortriptyline/aventyl/pamelor. My sister has MS and it was only through her neurologist the she was told/found out that with amitriptyline and nortriptyline it is likely one will work for you but the other wont, i.e. if amitriptiline works for you it is likely that nortriptyline wont and vice versa. Myself for example nortriptyline did absolutely nothing but amitriptyline has been a god send(well prior to june flare up that hasnt ended).

 

[JayCS]

nortriptyline/aventyl/pamelor

Arggh, yes, I keep forgetting that one! 🤯.
It's the higher price that keeps docs from prescribing it, but if we're in the know and it helps, then that'd be cheaper in the long run.

 

[hope23]

Arggh, yes, I keep forgetting that one! 🤯.
It's the higher price that keeps docs from prescribing it, but if we're in the know and it helps, then that'd be cheaper in the long run.

Is that one more expensive where you are based?
In new zealand most prescribable medications cost $5 for the prescription, and if that medication is prescribed with say 2 repeats on it then you only pay the $5 for the first lot you get as technically its only one script

 

[JayCS]

In new zealand most prescribable medications cost $5 for the prescription

Probably same here for the patient, but it's I think double the price of amitriptyline for the insurances, and docs are encouraged to be price conscious. Ah, I've found my notes on it:
"nortriptyline/Pamelor not being offered much either I’ve heard again was the price. Drugs com confirms it’s a bit more expensive (twice as expensive per unit), but that’s still only half of pregabalin and gabapentin.
Some experiences are negative, but as amitriptyline is converted into nortriptyline in the liver it is generally thought to have less side effects than that.
BTW, nortriptyline has been proven similarly good to amitriptyline a few times."
So if it's still half the price of pregab and gab, so the price is not a good reason, and it was introduced for depression in 1963, so it's not exactly new either...

 

[mrsb62]

Hi sweetheart
So I am currently on sick due to sleeping all the time and my symptoms are worsening.ive worked since the age of 18 and this was like a blow to me.
But if you can work Part time do it hun try and talk to your boss about doing say 16 hrs.
I'm on pip if u need help filling the paperwork in I'm always here hun.but like sunkacola said make sure u keep moving ur body. But take things at a pace.
Sending all my love to you xxx

 

[Auriel]

Katie. your husband made vows better or worse, and now it's one of the worse times, please try not to feel bad for needing help or suffering, you have a painfull chronic illness (I take gabapentin too and it for sure makes you drowsy,) also i know of two people working at the citizens advice who also get pip so you could give it a try see how it goes? and yes, we're fighting, we fight every day for a semblance of normal, on a lighter note, welcome to the forum! ☕️ 🍰, hope you stay a while to let us know how you're getting on and outcomes of things 🤗💕🤗

 

[Madrooster1964]

I can definitely relate Katie. I have insurances that would pay me 80% of my salary for two years and a substantial lump sum if I gave up work but as I am the major earner (by a long way) in our family it would place enormous pressure on my wife and I really dont want to do that - she is my rock already!!!!

I have a further concern and that is what the effect of not working would have on my mental health. I know that on days when I simply cannot get to work that laying around in pain or half slumber sends my mind working overtime - and mostly negative. "Is this what I can look forward to for the rest of my life" is the usual theme and its depressing. Because of that I am scared to even contemplate stopping work and want to maintain working for as long as I can because i fear the alternative.

 

[Painter309]

I retired on disability last year at 54. I too had a career I loved and had worked hard for. I now work 20 hours a week from home with lots of flexibility for the days I can’t make it happen. Not working has been a huge blessing for me. However, I think I was in denial because I somehow thought once I didn’t have the stress and pressure of work I wouldn’t have fibro or chronic fatigue anymore. Lol. Not the case at all. But it does give me the ability to manage better.

I am sorry you are going through this. It was a type of grief for me to come to terms with my new reality and nearly 3 years after my diagnoses I am starting to get there. I had to give myself the time and space to grieve the life I used to have.

Best wishes to you.

 

[Auriel]

@Painter309, I got a bit delusional with the fibro at one point as well (I thought if i put more make up on and acted like I was super healthy the fibro would just go!) It didn't go 🙃, now I've accepted everything and stopped explaining myself to people who are just not listening to me about it, your new! Welcome! ☕️🥞 🩵

 

[sunkacola]

It was a type of grief for me to come to terms with my new reality and nearly 3 years after my diagnoses I am starting to get there. I had to give myself the time and space to grieve the life I used to have.

It is, indeed, a kind of grief for us. There is great loss in a person's life when fibromyalgia hits. The losses are different for each person, but they are always large and meaningful and difficult to accept. The key to managing it effectively is acceptance or, as you say, coming to terms with what is reality now. This I think is the most important thing.

And yes, it takes time. Three years to be getting there is not at all unusual. I actually think it is an ongoing process, at least for me.
I am a person who has practiced acceptance as a way of living for many years, and before I developed fibro. I have had fibro for years now and have accepted it to a large degree and count on that acceptance to make it possible for me to live with it. But I still have days when I do Not accept it! And instead want to rant and rave about it, I get angry, and so on. I think most if not all of us never reach a point where we are all done with that work and are 100% accepting of it all the time.

Part of that is, as you say, giving oneself the time to grieve what is lost and to come to terms with it, and this takes time. Sounds to me as if you are on track. Welcome to the forum.