This is a joke!!

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

This is a joke!!

Postby toni » Wed Sep 25, 2013 9:53 pm

So i had to visit the pain management people yesterday who ive been seeing for about 4 months now... they told me that they dont think they can help me anymore basically they feel they are spending money on me and wasting it cuz they cant get any results. so basically im screwed. my boyfriend has had a bad day today with suspected fibromyalgia but he has to wait several months to see rheumatology before it can be confirmed. what im basically saying is the NHS have not helped us at all as far as im aware since they diagnosed me they have been trying to write me off and pretend im not here anymore which i do not agree with ive just been given this medication which has a side effect of making you drowsy its supposed to help with the pain i find it does nothing for the pain but makes me soo drowsy im like a zombie the next day and now im finding it difficult to do simple tasks of walking up stairs that i now catch the lift... both me and my boyfriend are getting to the end of our tethers and are feeling unsupported and we would both just like some help in getting through this we are both young and we both used to be quite sporty i actually feel like if i have this for the rest of my life then i would rather be dead cuz i just dont know how much longer i can cope with being fobbed off to someone else... any helpful suggestions would be gratefully recieved.
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am

Re: This is a joke!!

Postby Garyl » Wed Sep 25, 2013 10:15 pm

Toni you have to stay strong, i live on my own so have no support other then doctors and nurse at practice, pain killers hardly work.

You just need to find the right thing to help you am using a tens machine as well as pain killers which some days work some don't, but i try stay strong as i help campaign for fair treatment of people like us with the fight against dwp

You have a lot to live for and remember that together we are strong
Garyl
UKFM Member
 
Posts: 229
Joined: Mon Sep 09, 2013 1:45 pm

Re: This is a joke!!

Postby Maria68 » Wed Sep 25, 2013 10:16 pm

Hi, try and keep with it....its frustrating I know and the stress of it all triggers 'flares'....I had a massive stand off with my consultant back in May when she told me that she knows its painful to exercise but to not let the pain put you off......I replied "oh so the old put your hand in fire and get burnt will teach you not to do it again does not apply to this condition" she told me basically the hospital were doing all they can to help me and that it was a painful condition and that I had to learn to live with it.....I was so annoyed and upset. However, when she said she would see me in three months my reply was.....I know what I will see you in twelve months cos you are basically writing me off so why waste my time every three months. I have since found a fantastic Doctor at my surgery (if you ask for which of your doctors specialise in Rhumatology and only she him/her) and this doctor has done more for me in the last six months with my medication and aids ie walking stick, thumb splints, steriod cream and for when I flare like I am at the moment prednisolone tablets and sometimes someone just to listen to me than the hospital did in three years. Keep with it.....keep focused......is your medication pregablin or amitryptaline by any chance? The sleepiness does wear off eventually it can take up to three months to start acting in the proper way :-)
Living the Dream :-) well some days I am
Maria68
UKFM Member
 
Posts: 12
Joined: Mon Sep 23, 2013 7:56 pm
Location: Manchester, UK

Re: This is a joke!!

Postby Flash » Wed Sep 25, 2013 10:22 pm

Keep coming on here and keep talking.
Really, I know exactly how you feel. In pain, tired, depressed, finished, on the scrap heap and forgotten about!!! :yikes: :banghead: :bricks: :puke: :snore1: :pull-hair:

On here though, you are not forgotten about. There are plenty who know how you feel and can give advise, share experiences or just acknowledge your frustration.
Sometimes it helps, you realise you are not alone.

I have suffered for years and have at times felt as desperate as you and your B/F. It really does get as bad as "I might as well not be here." It does seem pretty desolate right now but you will find ways of pacing your self and then ways of enjoying things again.

As far as GPs etc go, it does seen like a joke but they are trying to contend with a condition that they know very little about. The blind leading the blind. Pain killers, physio and pain clinics are all they can try and if that doesn't work, well, what else is there?

I have ended up not taking pain killers because the side effects were just too much. If I didn't end up like a zombie with severe constipation and piles, then I put on huge amounts of weight. I couldn't win!

Have a look around, see what others are taking, have a word with your GP and make some decisions about what is best to try or not to try... Would physio be any help? Can they offer hydro therapy? would diet be worth looking at? anything that can put you back in control and benefit you long term.

Take care and I hope you get help and I hope you and your B/F are able to support each other. Good luck to you both.
Flash
UKFM Member
 
Posts: 505
Joined: Wed Aug 29, 2012 1:03 pm

Re: This is a joke!!

Postby toni » Wed Sep 25, 2013 10:25 pm

Maria68 wrote:Hi, try and keep with it....its frustrating I know and the stress of it all triggers 'flares'....I had a massive stand off with my consultant back in May when she told me that she knows its painful to exercise but to not let the pain put you off......I replied "oh so the old put your hand in fire and get burnt will teach you not to do it again does not apply to this condition" she told me basically the hospital were doing all they can to help me and that it was a painful condition and that I had to learn to live with it.....I was so annoyed and upset. However, when she said she would see me in three months my reply was.....I know what I will see you in twelve months cos you are basically writing me off so why waste my time every three months. I have since found a fantastic Doctor at my surgery (if you ask for which of your doctors specialise in Rhumatology and only she him/her) and this doctor has done more for me in the last six months with my medication and aids ie walking stick, thumb splints, steriod cream and for when I flare like I am at the moment prednisolone tablets and sometimes someone just to listen to me than the hospital did in three years. Keep with it.....keep focused......is your medication pregablin or amitryptaline by any chance? The sleepiness does wear off eventually it can take up to three months to start acting in the proper way :-)



Im on amitryptaline im just so frustrated both me and my boyfriend are suffering and were finding it hard to just do normal things i wont let him pick me up cuz im so scared he will be in pain whether im heavy or not. the lady i saw was just so patronising and i came out of there feeling useless and upset these places are supposed to make you feel better yet half the time i come out of that place i feel worse :( she said i was depending on them to much yet they are the people who tell me to book the appointment im only doing what ive been told to do in the hope it will make me feel better which it isnt i feel worse half the time im 16 yet i feel like im 90.. this isnt good for me my love life my boyfriend were both suffering so bad and would just like a break from it all :(
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am

Re: This is a joke!!

Postby toni » Wed Sep 25, 2013 10:30 pm

Flash wrote:Keep coming on here and keep talking.
Really, I know exactly how you feel. In pain, tired, depressed, finished, on the scrap heap and forgotten about!!! :yikes: :banghead: :bricks: :puke: :snore1: :pull-hair:

On here though, you are not forgotten about. There are plenty who know how you feel and can give advise, share experiences or just acknowledge your frustration.
Sometimes it helps, you realise you are not alone.

I have suffered for years and have at times felt as desperate as you and your B/F. It really does get as bad as "I might as well not be here." It does seem pretty desolate right now but you will find ways of pacing your self and then ways of enjoying things again.

As far as GPs etc go, it does seen like a joke but they are trying to contend with a condition that they know very little about. The blind leading the blind. Pain killers, physio and pain clinics are all they can try and if that doesn't work, well, what else is there?

I have ended up not taking pain killers because the side effects were just too much. If I didn't end up like a zombie with severe constipation and piles, then I put on huge amounts of weight. I couldn't win!

Have a look around, see what others are taking, have a word with your GP and make some decisions about what is best to try or not to try... Would physio be any help? Can they offer hydro therapy? would diet be worth looking at? anything that can put you back in control and benefit you long term.

Take care and I hope you get help and I hope you and your B/F are able to support each other. Good luck to you both.


Firstly thank you for your reply ... i know its like the blind leading the blind but they could at least be a bit more sympathetic im trying my best to understand but frankly i am so close to just giving up the fact thatt they do not seem to be helping me at all and i feel like im being looked at as if to say well you have a diagnosis therefor you do not need our help makes me feel sick they are supposed to help instead i feel like they are making me worse.. i have one doctor who is helping and seems to be a guy i can trust but im sure his true colours will show just like the rest of them... thank you again for your reply
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am

Re: This is a joke!!

Postby toni » Wed Sep 25, 2013 10:32 pm

Garyl wrote:Toni you have to stay strong, i live on my own so have no support other then doctors and nurse at practice, pain killers hardly work.

You just need to find the right thing to help you am using a tens machine as well as pain killers which some days work some don't, but i try stay strong as i help campaign for fair treatment of people like us with the fight against dwp

You have a lot to live for and remember that together we are strong



Thank you for your reply im sorry you have hardly any support it made me feel bad for you reading that bit... im trying my best to stay strong but getting to the point where i just hardly am coping anymore would be nice if the doctors could help more often but doubt they ever will thanks again
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am

Re: This is a joke!!

Postby FluppyPuffy » Wed Sep 25, 2013 11:42 pm

Maybe you need to try and different approach with whoever you see next. Sometimes a considered, researched and direct manner can bring about a different sort of response from people, regardless of their profession, position etc.

Maybe have a good look into the various meds and treatments that can be used in managing FM, incl side effects, compile some info and take it with you to your next appt, be it with your GP or Pain Management and ask them what would be suitable for you to try. Ask about the availability of things like physio, hydrotherapy, acupuncture and any other treatments that you may be able to access. It's not unusual to be on a number of meds to try and manage the various symptoms and problems that FM brings with it, and it takes time to find the right cocktail for each of us, but it is possible to to get things more under your control rather than they trying to control you.

I understand you're desperate for something more immediate to ease the intensity of things, that's a place most of us have been in at some point along the way, and for some the more straight forward painkillers can help with this. Depending on what you have already tried, you could ask if there is a stronger dose or alternative that might help.

What was the med called that you have described here??
toni wrote: ive just been given this medication which has a side effect of making you drowsy its supposed to help with the pain i find it does nothing for the pain but makes me soo drowsy im like a zombie the next day and now im finding it difficult to do simple tasks of walking up stairs that i now catch the lift
If it is something like Amitriptyline then the drowsyness tends to start easing off after a week or 2, and with a bit of twiddling around with the time that you take it, the morning~after zombification can be reduced as well.

As well as meds, there are other things you can try. Heat applied to a particularly affected area can help ease things, a lot of us have a number of the wheaty bags that can be zapped in the mikey for use on such areas. And a good old hottie bottie wrapped up in towel can be used in a similar way. For some, TENs machines can help, there may be a scheme in your are that you access either via your GP or Pain Management where you could be loaned a machine to see how you go on with it. And soaking in a warm bath with some nice relaxing bath can help, not only with the pain side of things, but also with making you feel a little less tense as well.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: This is a joke!!

Postby *Lisa* » Thu Sep 26, 2013 9:55 am

toni wrote:So i had to visit the pain management people yesterday who ive been seeing for about 4 months now... they told me that they dont think they can help me anymore basically they feel they are spending money on me and wasting it cuz they cant get any results. so basically im screwed.


I have the same trouble... in fact many chronic pain sufferes also have this as i was told *the NHS do not/cannot fund illnesses they cannot cure* its a waste of there money :shock: this is why i now have to pay for private physio.

A friend of mine has just been told she will no longer be able to have pain injections even tho they were helping her for up to 4 months at a time for the same reasons... she hasnt a clue what to do now but like me will have to start to pay private.
I pay private out of my DLA moneys but many people struggle to get this for help so are in an unfortunate state.

The thing with chronic pain / FM is that its life long and all treatments need to be consistant for a better well being. You will find most NHS will only offer short term help.

Even many medications for fibros are now being stopped in areas. Diazapam is one, morphine another.. again funding! (long term cases)
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
*Lisa*
MODERATOR
 
Posts: 3901
Joined: Sun Sep 07, 2008 2:01 pm

Re: This is a joke!!

Postby GinaD » Thu Sep 26, 2013 10:48 am

Maria68 wrote:Hi, try and keep with it....its frustrating I know and the stress of it all triggers 'flares'....I had a massive stand off with my consultant back in May when she told me that she knows its painful to exercise but to not let the pain put you off......I replied "oh so the old put your hand in fire and get burnt will teach you not to do it again does not apply to this condition" she told me basically the hospital were doing all they can to help me and that it was a painful condition and that I had to learn to live with it.....I was so annoyed and upset. However, when she said she would see me in three months my reply was.....I know what I will see you in twelve months cos you are basically writing me off so why waste my time every three months. I have since found a fantastic Doctor at my surgery (if you ask for which of your doctors specialise in Rhumatology and only she him/her) and this doctor has done more for me in the last six months with my medication and aids ie walking stick, thumb splints, steriod cream and for when I flare like I am at the moment prednisolone tablets and sometimes someone just to listen to me than the hospital did in three years. Keep with it.....keep focused......is your medication pregablin or amitryptaline by any chance? The sleepiness does wear off eventually it can take up to three months to start acting in the proper way :-)

I was om Amitriptyline , stopped taking it because I work and the Zombie affect made it almost impossible!! no-one told me it would wear off, thin I will try again, thank you xxxxxx
GinaD
UKFM Member
 
Posts: 15
Joined: Mon Sep 09, 2013 8:25 am

Re: This is a joke!!

Postby toni » Thu Sep 26, 2013 5:42 pm

FluppyPuffy wrote:Maybe you need to try and different approach with whoever you see next. Sometimes a considered, researched and direct manner can bring about a different sort of response from people, regardless of their profession, position etc.

Maybe have a good look into the various meds and treatments that can be used in managing FM, incl side effects, compile some info and take it with you to your next appt, be it with your GP or Pain Management and ask them what would be suitable for you to try. Ask about the availability of things like physio, hydrotherapy, acupuncture and any other treatments that you may be able to access. It's not unusual to be on a number of meds to try and manage the various symptoms and problems that FM brings with it, and it takes time to find the right cocktail for each of us, but it is possible to to get things more under your control rather than they trying to control you.

I understand you're desperate for something more immediate to ease the intensity of things, that's a place most of us have been in at some point along the way, and for some the more straight forward painkillers can help with this. Depending on what you have already tried, you could ask if there is a stronger dose or alternative that might help.

What was the med called that you have described here??
toni wrote: ive just been given this medication which has a side effect of making you drowsy its supposed to help with the pain i find it does nothing for the pain but makes me soo drowsy im like a zombie the next day and now im finding it difficult to do simple tasks of walking up stairs that i now catch the lift
If it is something like Amitriptyline then the drowsyness tends to start easing off after a week or 2, and with a bit of twiddling around with the time that you take it, the morning~after zombification can be reduced as well.

As well as meds, there are other things you can try. Heat applied to a particularly affected area can help ease things, a lot of us have a number of the wheaty bags that can be zapped in the mikey for use on such areas. And a good old hottie bottie wrapped up in towel can be used in a similar way. For some, TENs machines can help, there may be a scheme in your are that you access either via your GP or Pain Management where you could be loaned a machine to see how you go on with it. And soaking in a warm bath with some nice relaxing bath can help, not only with the pain side of things, but also with making you feel a little less tense as well.



Hi it is amitriptyline thank you for your reply will try maybe a heated massage coshion next i have already tried a hot water bottle and physio therapy i havent tried hydro therapy but if its anything like swimming well i already do that thank you again will try your suggestons
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am

Re: This is a joke!!

Postby toni » Thu Sep 26, 2013 5:51 pm

*Lisa* wrote:
toni wrote:So i had to visit the pain management people yesterday who ive been seeing for about 4 months now... they told me that they dont think they can help me anymore basically they feel they are spending money on me and wasting it cuz they cant get any results. so basically im screwed.


I have the same trouble... in fact many chronic pain sufferes also have this as i was told *the NHS do not/cannot fund illnesses they cannot cure* its a waste of there money :shock: this is why i now have to pay for private physio.

A friend of mine has just been told she will no longer be able to have pain injections even tho they were helping her for up to 4 months at a time for the same reasons... she hasnt a clue what to do now but like me will have to start to pay private.
I pay private out of my DLA moneys but many people struggle to get this for help so are in an unfortunate state.

The thing with chronic pain / FM is that its life long and all treatments need to be consistant for a better well being. You will find most NHS will only offer short term help.

Even many medications for fibros are now being stopped in areas. Diazapam is one, morphine another.. again funding! (long term cases)



Thank you for your reply... normally when i come out of seeing the oain management team i feel patronise but when i came out of there on tuesday i was just in floods of tears i felt lost and not quite sure what to do with myself... even though seeing them wasnt exactly making me feel better i felt like i was being supported and wasnt on my own... now i feel useless even more and i feel like that was quite rude of them writing me off when they know i need this... why does everything have to be about money? i would go for privaate but i have no money and dont think i will get funding for it and at the moment if i cant trust the hospital i dont think i will trust private hospitals either :( i have heard it is life long but i have also heard in cases where people have managed to get over it ... it may have taken them 10 years but they eventually went back to how there life used to be... the only guy whos actually helped is my gp but im getting to the stage where im waiting for him to screw up to.. thank you again for your reply
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am

Re: This is a joke!!

Postby Lucyhobbit » Thu Sep 26, 2013 6:37 pm

Hi Toni,

It's horrible when you feel like the medical professionals have turned their back on you, although I'm a lot older than you now, I was 19 when I was diagnosed - and that only happened after I made a formal complaint about a consultant who told me "I wasn't worth the money on expensive and complicated tests to find out why I was in pain" - funny how that phrase has stuck in my head for the last 20 years! However I went back to my GP and insisted on a second opinion and 2 appointments later I had a diagnosis. If you feel they are not helping you, or are patronising you, try to be persistant and insist on seeing someone else. It can be so hard and such an emotional time just try to remember that you deserve better treatment, and a plan of action from the NHS. Make your voice heard either through your GP or directly to the consultants at your next appointment. :hugs: it's a hard thing to live with, but it can be done and life can still be great, especially with the medicinal use of [chocolate] [chocolate] [chocolate] [chocolate] [chocolate]
User avatar
Lucyhobbit
UKFM Newbie
 
Posts: 9
Joined: Sun Sep 22, 2013 8:03 pm

Re: This is a joke!!

Postby Garyl » Thu Sep 26, 2013 7:06 pm

Toni no need to feel sorry for my situ, i keep going and while the pains are bad and get me down i stay strong as i can,my being on my own is personel choice, do not want to put a partner through what i go through.

We all support each other that helps
Garyl
UKFM Member
 
Posts: 229
Joined: Mon Sep 09, 2013 1:45 pm

Re: This is a joke!!

Postby toni » Sun Sep 29, 2013 9:22 am

Thank you everyone, i spoke to my gp and have been told to have a blood test and see where that goes. i am really p :swear1: :swear1: d off but grateful for all your support and replyies, they have made me feel better and that there is some sort of help.thank you guys again (: x
Last edited by FluppyPuffy on Sun Sep 29, 2013 11:50 am, edited 1 time in total.
Reason: Grammar, punctuation and removal of expletive.
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 9 guests