mental health / fibromyalgia

[Mommagonnaknockyouout]

Suffered for years but never known about fibro till somebody at work asked if I had it due to some little symptoms I was displaying. I do suffer mainly with anxiety. Doc says fibro is all to do with mental health what's everyone else's views

I was given one a different one when I should have been given the nortriptyline (which I am too scared to even try based on the last one's) Was a really fun conversation with a specialist who demanded to know why I had been given the different one. Yep like I had a choice when i was lied to by the gp. I was told by the Gp the one I was given would work but according to the specialist it should never be given for that symptom. GP fuck up which has left me with out treatment options.

The service that was cancelled was a pain clinic course that was supposed to give support advice wrt cbt/diet changes/ targeted exercise etc. Would have save the nhs huge amounts of money in the long run, not to mention give people the change to some quality of life.

It is not just about cost it is also a complete lack of knowledge on the part of GPs. Knowledge is not cheap nor all encompassing but we are putting our lives in their hands we need to be able to trust that they are able to prescribe meds that don't interact are not going to accidentally kill us Number of filled prescriptions i have had to return because they can't be taken with meds I am already on. Meds then just have to be thrown out. Can't be re-issued even if the only thing out of the box is the information leaflet. Complete waste of time and money.

Lunchpack , do you have a link for that? Would be very interesting.

Guess I am still seriously hacked off with that GP, Don't suppose the fact I didn't sleep at all last night and am now on hour 33 of being up is helping that.
sorry about that minor highjack

All I put into Google was cost comparison drugs to NHS and it was the third one down I think. It's downloaded as a pdf to my phone this is the front page if you want to Google it

can't I was also wary if nortriptyline after shit experiences on amytriptiline but it is really worth going on if you can convince your gp

I was given a prescription but it has expired. I need it to control migraines that put me in hospital. I think he would be relieved if I asked for it to be re-issued tbh.

It cut my migraines from daily to twice a month as a happy byproduct. Do go back and ask for another prescription

I will consider it, but have managed to significantly reduce them with dietary changes and vitamin suppliments. I really don't do well with chemicals and non-natural substances so I would rather not be constantly medicated if I can avoid it. Tbf with the changes that I brought in since easter I have gone from pretty much constant pain, confined to bed and going weeks without sleep to actually having pain tollerable days where I can actually do a reasonable amount. So I suspect that deficencies are a major part of my fibro/cfs flare ups. I just need a long term management plan. Is it safe to carry on doing what I am doing indefinitely? do I need to tweak it to prevent accidental vitamin overdose? I need one appointment to talk this through and then to marry a good physio to sort the muscle spasms. I am getting to the point were I am finding good control strategies, even if I still have to book entire days in bed to rest and know I will be up all night in pain occassionally when I do too much and forget to pace. And I know that what has worked for me may well not work for other people. Thus is the frustrating thing of this condition. No simple answers.

Sorry been away for a few very very bad days. Been in bed and pottering around slowy. Ive had huge complications with odema after they tried corticosteroids 9months along. Looks like venous irregularity. Legs now cant pump the blood back up as the veins are collapsing. Another thing to add to my list. Ive read eveyones comments and realised with that table i must cost the NHS a bomb!!! They have only just prescribed compresson stockings due to having to ask the practice manager re cost availability!!
Im on 600mg pregablin, 20mg ish of diazepam daily, baclofen 100mg daily, 80mg of oxycontin, 70mg transtec patxhes per week, paracetamo 8 taleys daiy, setraline 200mg per day, oramorph as and when. Theyve jist given me a hefty dose of naprozen for a month to reuduxe inflmmation but thats reacking havoc with my stomach im tring slowly to get off the patches first.

It hurts again today all over but ive managed to drop kids off to school and now odf to hydrotherqpy bliss. Lots of spouts :) heat is goood!!!

Do qny of you go to fibro support groups out of curiosity?

Hope everyone is at a tolerable level today.

[Flowers]

I have severe vein pooling from dysautonomia too, bless you. Did the teach you to do leg pumps?

Nope what are they? I have a machine that is a bit like a tens tha i attach probe to my calf and it sends pulses through those ad the sole of my feet its called revitalise or somthinf like that. Got it in boots. Just waiting for an appointment for the hosp to do some scan/doppler thingy? I think its also to do with the amount of weight ive put on so quicky.

I squeeze my toes continually as a tic, this pumps blood back a little. Leg pumps are knee bends basically. An ankle, knee bend and bumbling to ankles bend is the ultimate leg pump apparently.

I had a ttt, it took thirty plus years complaining of symptoms.

Interesting about leg pumps. I get a lot of restless leg syndrome which is one of the long list of symptoms. I learned to do the leg pump thing out of desperation one night it was so bad I did some deep squats and it worked. I also stretch my calf muscles and crunch my toes.

I found support stockings made it worse. I wore them on a flight and had t go to the toilet and rip them off. I was in really severe difficulty.

One problem I am very worried about is poor circulation in my feet is causing splits and cracks in the skin. Worse in winter I think because the blood circulation slows when my feet are cold. I feel cold a lot.

Not sure what to do. Worried I might get damage to my feet like diabetics do. Not sure I can bother my GP with yet another problem right now. I try and pick my moments rather than keep going with a litany of issues.

My body reacts with raynards in winter, white frozen feet and fingers.

I suffer from neuropathic pain in both hands, it's one of the reasons I'm prescribed both 600mg Pregablin and 60mg Duloxetine. I managed to get put onto Naproxen last month too, up to 1000mg daily. However any attempt to get onto anything stronger than 30mg Codeine or 50mg Tramadol (8 pills daily) is beaten down. I'd really like to get something stronger but have no idea how, nor does it matter how verbosely I elucidate my request.

I'd be laughed out of the office if I took the research into rituximab in with me....

Frustrating.

I have both but i don't agree that they are linked for everyone.
I suffered with anxiety and depression for a few years before my pain started.
only time I've heard of mental health and it being mentioned together was by a random doctor saying they didn't like diagnosing people my age as im young and it can be depressing since there is no cure.

I take topirimate for migraines as i used to suffer with one nearly every week and they lasted days.
Really sorted them.
I take tramadol daily and cocodamol sometimes when the spasms are bad or i have a headache.
Im not currently on any preemptive drugs for fibro anymore as ive got a blood disorder so we are trying to sort that first.
I did try gabapentin, pregablin, amitriptyline and somethingelse but none of them worked.
Gabapentin just made me end up with thinning hair!
Im glad my doc put me on stronger painkillers.
My depression had got horrendous as i was in agony and unable to leave my bed.
Yes i still have days in bed but atleast im not screaming in pain anymore or wanting to kill myself.
My doc is fab. I looked up drugs that were supposed to help and she has always been happy to try.
She also prescribed me my branded pill and painkillers as i have always had a reaction to the non branded versions of these. Some of the others won't because of the cost, like i don't have enough problems.

Thanks howto re the leg pumps. Someone metioned their skin splitting on their feet yes ive joined the club. Have so far spent most of the week in bed sleeping and ignoring people. I missed my pain clinic appoitment as i fell asleep and despite the GPs sending letters for them to see me earlier than said appointment. I now have an appoitmet for......MARCH!!!!!! Going down hill rapidly with pain threshold and actual need to do things just giving up although i know in time i will heal but the pain is awful.
How is everyone else?

What will you do?

In pain too. Spending my life trying to distract myself.

I came across this brain fog study you may find interesting

www.dysautonomiainternational.org/pdf/BrainFog.pdf

Read that thank you!! This POTS are you born with it and it rears its ugly head at some point or is it acutally a trigger from something. Need to look into it but its a bit hard to comprehend atm!