Something the doc says will help...

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

Something the doc says will help...

Postby toni » Tue Oct 08, 2013 3:10 pm

The Doctor gave me this last option he said he couldnt find anymore to help me... basically im stuck with it now they've ruled everything else out theres no cure there are medication but becuase of my age if i took them they would affect my education in some form or another... so he pointed me to this website and told me to let him know how it goes and if it works... i am now feeling so lost and so scared... i just want my life back i just want someone to tell me its going to be ok and that soon i will be fine and i wont have this all my life...

The website he told me on the phone is: http://www.sdhct.nhs.uk/aboutus/service ... t2life.php

Has anyone else had this website shown to them? Does it help? is it a waste of time? please let me know
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am

Re: Something the doc says will help...

Postby FluppyPuffy » Tue Oct 08, 2013 4:12 pm

It looks like an online version of a Pain Management Programme that some healthcare trusts run as actual sessions over a number of sessions. The various pdfs look like they would normally be handed out to those who are attending each session to use as reference material and possibly for making notes on if needed, so they can refer back to it at a later time.

It comes down to the individual as to whether these kinds of things will help or not. If approached with as an open mind as possible, things can be learnt that can be helpful. However, if approached with thoughts such as "it's not going to help" or "this is useless/pointless" then, rather than gaining any benefit from it, the most likely outcome would be a self~fulfilling prophecy as these kinds of thoughts basically prepare someone to fail rather than suceed.

The only way you'll know if it helps is to start it and give it a good go. Wrt meds, which ones have you been told about that could have some effect on your education???

I could tell you that everything is going to be all right, but unfortunately it would be an empty promise as none of us really know what is in store for us with this condition. I can say that as time passes, you find out more about the condition and how it affects you, that things can change for the better. It takes a while to get there and it will be a bumpy ride at times, but there are brighter times to be had.

We would all like to have our previous lives, or at least elements of it back, but until there are some major steps forward in research, treatments etc that can make vast differences to all of us, we have to keep bobbling along with what we have available at the current time. I'm not patronising or talking down to you, I'm hopefully explaining things as they may well happen in a pragmatic/realistic way as that's how I approach most things since being part of the FM gang.
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: Something the doc says will help...

Postby Lucyhobbit » Tue Oct 08, 2013 4:26 pm

Hi Toni, I was diagnosed with FM before I went to University - I tried a lot of pills and some of them do have side effects, but those that had bad ones I stopped and tried a different one next time I went to the pain management clinic. As I know people have said before, some meds will cause problems for some people and some won't. Please don't be put off trying things because you are worried about how they'll affect you (and don't let others - like doctors - put you off trying either) Only you will know if it works for you, and if you can tolerate the side effects (if you have any)

The pain management module looks interesting - and is probably easier to *brain fog can't think of word* access? use? (one of those) than waiting around for consultant, physio or clinic appointments.

I've learned with Fibro you should never leave anything out - you've nothing to lose by trying. I found going to university gave me, personally, something else to think about and that helped a lot.
User avatar
Lucyhobbit
UKFM Newbie
 
Posts: 9
Joined: Sun Sep 22, 2013 8:03 pm

Re: Something the doc says will help...

Postby whoami » Tue Oct 08, 2013 6:26 pm

Toni, please do not look at anything as a last option. I know how you could feel that way, I did 24 years ago.

I can't understand what the Dr is on about how meds will affect your education. Many people with or without fibro are on some serious meds and go to school. I am curious about his thoughts.

As fluppy said, you need to go into a pain management program with an open mind. If we put it in our head nothing will help then it won't. Myself I have been to three different pain management clinics and after taking them seriously found I have benefitted tremendously. They teach so much about acceptance, treatment and living with fibro or any chronic pain.
It could benefit you.
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
whoami
UKFM Regular
 
Posts: 1537
Joined: Wed Jan 23, 2013 9:22 pm
Location: Ontario, Canada

Re: Something the doc says will help...

Postby relf1960 » Tue Oct 08, 2013 9:25 pm

I sympathise with u toni, having it so young. Its bad enough at my age. What the doc will of meant is, some of the tablets with make u drowsy, which will make it harder for u to learn. But also, if he gives u ones that give u a better nights sleep, then surlythat would make it easier! It is a matter of trial n error. Best to write down what meds u had yday, n how u was in class, and how u slept at night. Add things like, aching back, headache etc. If get bad side effects but more enegy, try them a little longer to give them time to settle in.make sure u take them at right time of day, cus some r nights n others mornings. Some before,food some after. When u go to docs next u should have an idea of what improvement, if any. This will keep u up to date with what uve tried too. Cus i forget everything. Make sure u tell a teacher what u have wrong with u, so if they see u nodding off, its not because u were out all hours. She or he can look it up online n let the other teaches u have, know as well. Try and confide in a friend too, ifhe dont understand it, ask her to read about it too. Half the battle with this fibro is getting others to understand it. The support will b a great help to u. X
relf1960
UKFM Member
 
Posts: 65
Joined: Sat Feb 23, 2013 8:45 pm

Re: Something the doc says will help...

Postby toni » Tue Oct 22, 2013 12:33 pm

Thank you everyone...

I have decided to seek a second opinion as i feel my doctors are not taking me seriously with this and feel that if they prescribe me something i will just go away and stop seeing them.
I tried the amitryipilin for three weeks straight and feel that is hasnt actually made me better but made me worse. i forgot a lot of important things would even forget after i set a reminder on my phone... i would also lose my balance a lot and have dizzy spells falling over has become a regular occurance. so i told him that these are not helping.

A friend of mine mentioned that my symptons are simular to symptons you would get with MS and that i should mention that to my doctor.. i am scared that if i mention this he will not believe me and will just write me off even more. :( some help or advice at this point would be greatfully recieved and appreciated.

Thank you
toni
UKFM Member
 
Posts: 27
Joined: Sun Sep 15, 2013 11:37 am

Re: Something the doc says will help...

Postby FluppyPuffy » Tue Oct 22, 2013 1:02 pm

MS and FM do share a lot of symptoms, as it does with other conditions incl Rheumatoid Arthritis and Lupus. When tests are being done to try and find out what is the cause of a patient's problems, these conditions, along with others that may seem applicable, tend to be checked for, then, depending on results, either discounted or investigated further.

Seeking a second opinion is a sensible move, and hopefully will have a more suitable outcome for you :fingerscrossed: :fingerscrossed: :fingerscrossed:

Wrt Amitriptyline, whilst it is often used to help with the pain and sleep issues that come with conditions like FM, it doesn't help or suit everyone. When this is the case, an alternative that is often tried is Nortriptyline. It is a sister~med of Amitriptyline, working on the same issues and in the same way, but it is said to have fewer side effects and be better tolerated. Depending on how you feel, it might be something to ask your GP if they think it might be suitable for you. Like the amis, it needs about a month to get into your system and take effect, and sometimes the dosage needs tweaking and changing to find the right level for the individual.

Quite often, when a med doesn't suit someone, there can be another in the same group that makes a difference, so don't give up all hope, it takes time to find the right mix of things for each of us, and it's not unusual to have quite a varied cocktail of meds and treatments and therapies to help get things behaving more suitably.
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!!!


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 6 guests