Not sure where to start really........

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Not sure where to start really........

Postby Tempest » Fri May 24, 2013 10:36 am

I'm new to the forum and this is my first post and am just not sure where to start really :( I was diagnosed with FM back at Xmas time - I've always had problems with tiredness (was diagnosed with under active thyroid and have been on a high dose of thyroxine since my early 20s) so I always put it down to that and accepted that was just me.

I started having lots of back pain about 18 months ago and had 9 months of work waiting for MRI scans etc. They found a slight bulging disc in my lumbar spine and a slight scoliosis but nothing that really explained my pain levels. I started working with a personal trainer to increase my core strength but never made much progress through the exercises etc in improving muscle strength etc and he felt there was something else going on with me.

I saw a fantastic gynaecologist in October as I have lichen planus of the vulva and lots of scarring and vulvadynia and she felt that something else was going on due to my thyroid issues and back pain and tiredness and basically bloods showed nothing apart from low Vit D and B12 (which has now been fixed with supplements).

The rheumatologist I saw was fairly rubbish (despite paying privately) didn't even examine my trigger points and said it was probably fm or lupus (although all the tests for lupus came back negative and I don't really have many lupus symptoms) and put me on hydroxychloroquine which made me really ill and I stopped taking it. The gynaecologist felt it was totally the wrong drug for me to be on (as I believe it's more for lupus?). I was really angry as in the letter to my GP he said I was tender on all trigger points but he didn't examine me - when I challenged him about it he said he could 'tell from looking at me' that I would be tender on the trigger points!! I'm on pregabalin at the moment for the vulval pain which I don't feel does anything so not really sure of the point of it at the moment. I decided not to bother to go back to the rheumatologist as he was useless and I'm currently researching someone else who might be better.

The main thing I struggle with is that I work full time and started a new job at Easter and I'm just so exhausted and in so much pain all the time. At the moment I'm struggling with neck and shoulder pain and headaches. I get home from work and go straight to bed, cry, use heatpads and live on ibuprofen. I just feel like I'm dragging myself through from one day to the next with each one just as hideous. There are no good days just bad ones. I use weekends and evenings to just rest and sleep to ensure that I can get in to work each day. I'm in my mid 30s and just feel like the future looks very bleak - my other half isn't sympathetic at all so I feel like I can't talk about how I'm feeling and have to put on a brave face. He is annoyed about the amount of plans that I cancel so now we don't plan anything at all together as I'm so 'unreliable'. I just literally feel like I don't have a single thing in my life that I enjoy at the moment.

I feel like it's not an option for me to have any sick time as I've just started a new job and it's an amazing opportunity. It's also a 1 year contract so if I don't prove myself this year my contract won't be renewed. I just feel trapped really I guess - everything I read about fm says to pace yourself, don't overdo it etc and I just feel like this isn't an option for me, I have to drag myself out of bed and 6am and repeat the same process day after day.

Sorry for such a bleak first post - just don't know what to say about things at the moment.
Tempest
UKFM Member
 
Posts: 10
Joined: Thu May 23, 2013 7:23 pm

Re: Not sure where to start really........

Postby LouLou » Fri May 24, 2013 10:57 am

Hi Tempest

Welcome to the forum. Thank you for sharing some of your story with us. I just turned 30 and I still work 30 hours a week (used to be 45 hours a week) Like you I use all my spare time resting and gearing my body up for work.

You mention you are on pregablin but it doesn't seem to be working? This medication as with a lot of medication prescribed for FM can take a few weeks or even months to get into our system and fully work on what it is supposed to. If you have been on it a while then a chat with your GP to try something else may be worth while? You don't mention any other tablets you are on at the moment apart from ibroprufen? Many of us on here take a combination of painkillers to get us through the day so if you haven;t been prescribed anything for the pain, or feel what you are on isn't working then see your GP about reviewing your meds.

I tend to stick to a routine daily now which helps me get through the day and any slight deviation really sets my pain off. I have listed a few of the things I do each day which you may find help you. There is also a "Help/Tips on coping" section on here which we have all contributed to at some point so worth having a pek to see if there is anything you would like to try?

1. Hot bath in the morning before work.
2. Hot bath as soon as I get home
3. Pace during the day and take regular breaks - even just 2 minutes away from a computer screen or a bit of fresh air can help perk you up if you start to feel that dip in energy.
4. Hot water bottles/microwave wheat bags are my life savers and really help ease the pain after a long day.
5. Pace yourself - easier said than done but it's important to remember to only do what you can.

Have you spoken to your new employers/HR department about your illness as you may find they will be willing to make some adjustments to help you? My boss pushed my start time back to 9am because I struggle in the mornings and can't function until I have my bath. This way I get up and can get ready at a steady pace instead of rushing around.

Hope that helps a bit for now Tempest
xx
What doesn't kill you will only make you stronger ;-)
User avatar
LouLou
UKFM Regular
 
Posts: 1009
Joined: Thu Oct 06, 2011 10:40 am

Re: Not sure where to start really........

Postby Tempest » Fri May 24, 2013 11:53 am

Thanks for the reply :-) I'm a teacher so unfortunately there's no flexibility to change my working hours or start times or to even take a break during the day when I feel I need it so I realise that makes things much more difficult for me. I would say that my job is pretty high stress and fast paced so there's no chance to take things steady or even get a lunch break most of the time. At the moment I don't want to say anything to my employers as I've only been in post for 6 weeks and I'm so conscious of wanting to get my contract renewed next year :-?

I've been on pregabalin since October and can see no difference during the whole time I've been on it. I find my GP pretty useless to be honest so wouldn't really trust them to prescribe me anything different - I guess I need to try and sort out another specialist to see. When I was off work with the back pain I had all sorts of pain killers - naproxen, diclofenac etc and mainly just found that they tended to make me feel sick and light headed :shock:

Thanks for the tips on what helps you - I don't do baths unfortunately as I find it too painful trying to get in and out of one but I do have a hot shower every morning. I think at the moment I just feel like I'm at the point where trying anything is just hopeless as I feel so negative about everything. I don't think it helps at all that my other half is just so unsupportive of everything, I don't think he even honestly believes that fm is a real illness and thinks that I should just get on with things.
Tempest
UKFM Member
 
Posts: 10
Joined: Thu May 23, 2013 7:23 pm

Re: Not sure where to start really........

Postby LouLou » Fri May 24, 2013 1:39 pm

Hi Tempest

Wow I can imagine how stressful being a teacher is and working in a school. My mum is a Higher Level Teaching Assistant and though she loves the kids and he job most of the time she does say how stressful and tiring it is and she doesn't have FM or the added stress of being a teacher.

Is there another Gp you can see or another Surgery in your area? There are quite a few people on here who have had to swap and change due to the GP's not being understanding/willing to help etc. If the Pregablin isn't doing anything for you and you have obviously been on it for some time then it is definitely worth looking at changing your meds or even the dosage of Pregablin? There is such a wide variety of painkillers and the strengths of them.

The link below takes you to the NHS page of treatments that could possibly be available to you to help

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx

In terms of actual painkillers the few I know of are:

Gabapentin, Tramadol, Co codamol, mirtazapine, amitriptilyne (apologies for spelling lol) I am currently on Tramadol and Co codamol and even though I have been on them for about 2 years now I do find that if I take them on an empty stomach they do make me feel sick, so I always have a few digestive handy for just before I have to take my doses.

I know how hopeless things may seem at the moment, but unfortunately it does take some time and patience to work out what works for you and what doesn't. I'm also really sorry it seems you aren't getting that support that is so badly needed when fighting something like FM. I think the thing people struggle with the most is that so many of us look fine on the outside yet can be feeling extreme pain/fatigue on the inside. Plus if someone says they are in pain but can't pin point what caused it then it is hard to believe it is real.

I don't know what else to suggest to you other than to let you know you have a lot of support on here, you can log on and have a rant when you need to and you won't be judged.

I hope you can find some answers and something to help you.
What doesn't kill you will only make you stronger ;-)
User avatar
LouLou
UKFM Regular
 
Posts: 1009
Joined: Thu Oct 06, 2011 10:40 am

Re: Not sure where to start really........

Postby FluppyPuffy » Fri May 24, 2013 8:46 pm

:welcome: to our little sanctuary Tempest :cow-wave: :cow-wave: :cow-wave:

I'm sorry to hear how things are for you at the moment, stress and pressure are a couple of FM's favourite things to feed on, and when it can do it, it has to remind us constantly about it.

I can understand why you feel it wouldn't be right to have any time off sick in your current job, being on a termed contract with of chance of renewal/extending it, making that right impression is at the top of the list of things to be done. Unfortunately tho, it sounds like your body is telling you something very, very different, and if you carry on as you are, there is a chance that your body will start to fight back and make you do what it needs you to do to try and makes things a little less fraught. To try and reduce the chances of something like this happening, and to help make things a little easier for you manage/cope with, there may be some "reasonable adjustments" that can be made by talking to your employer. There are a few teachers on here, hopefully some of them will :penguin: :penguin: :penguin: :penguin: along at some point and offer you some advice and suggestions about how this could be achieved.

As well as the Pregabalin, as LouLou has said, there are other meds, plus treatments, that can help make things a little more comfortable. The linky she has given you has some info about the different things, plus there is lots of info and advice across boards that could be helpful, esp the Meds and Treatment and Help/Tips on Coping ones. Have a looky when you get a bit of a chance and see what there is. Also, depending on what dosage you are currently on, you may find there is some room for manoeuvre with your Pregabalin as it is also used for FM, and when the right dosage is found, it can help things ease back.

It's not unusual for us to be on a cocktail of things to help manage our symptoms, so altho things seem very bleak at the moment, try not to let go of that little bit of hope. Even when things are at their darkest, there are still little glimmers to be found. They may need a bit more searching for, but they are still there, and once you start to find them, they tend start to appear a little more easily and frequently :blowkiss: :blowkiss: :blowkiss:

There are a few things on here that quite often help those around understand a little more about FM and what it can be like for us to live with. With you saying your OH isn't understanding about things, if you wanted to have a have another try at getting him to understand a little more, you could print some of it up and let him have a read in his own time. It might help make a difference, even just a little one, which would benefit you. Here are a couple of linkys if you want to give them a try viewtopic.php?f=2&t=4732 and viewtopic.php?f=2&t=1761

I think I've waffled on enough at you for now :oops: :oops: :oops: :oops: Don't worry about posts sounding a bit bleak or wondering about what to say, we've each been in a similar place to where you are at the moment, so understand what it is like for you. ANything that you're wondering about or want to know about, just ask away. With all the info and advice on here, there's a good chance there will be something that could help or give you some ideas about what to do :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:
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: Not sure where to start really........

Postby masonsbarms » Sat May 25, 2013 4:15 pm

hi tempest i dont have much more to offer only that the pills for pain that you have had or are using seem to be antiinflamatery drugs,

these iv been told by my gp wont help the pain fm causes as it dosent cause inflamation but i do take celebrex for OA and these may help your back problems,

in with the oters try another gp and as the others have said i to take a cocktail to get through a days work,

hope you find some help soon take care xx
masonsbarms
UKFM Regular
 
Posts: 1119
Joined: Wed Dec 28, 2011 8:14 am
Location: preston

Re: Not sure where to start really........

Postby denys » Sat May 25, 2013 5:15 pm

Hi Tempest and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:
Denys

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.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Not sure where to start really........

Postby shazq » Sat May 25, 2013 7:49 pm

:welcome: to the forum Tempest :cow-wave:
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.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: Not sure where to start really........

Postby Tempest » Sun Jun 02, 2013 11:07 am

Thanks for all the replies - sorry to take so long to post but I went away for a few days with my mum what with it being half term as I just needed to get away from real life for a bit. It's kinda backfired unfortunately as all the prep for the holiday and then all the travelling and sorting out washing/unpacking etc yesterday has left me feeling totally exhausted and in lots of pain today and it's back to school tomorrow and I just feel shattered.

Have had lots of tears about coming back home as I just didn't want to return to getting up at 6am and being in pain every day and just getting back into the cycle of trying to drag myself through work :( I'm trying to think that it's only 7.5 weeks to the school hols so I've just got to make it that far and that will give me some breathing space over the summer hols.

I'm waiting for a neurologist referral to come through at the moment so am holding back on going to my GP as I'm hoping the specialist might have more ideas for medications etc.

I think at the moment I'm just feeling bleak about everything and I think I just feel scared for what the future holds as I think in reality things can't carry on as they are at the moment :(
Tempest
UKFM Member
 
Posts: 10
Joined: Thu May 23, 2013 7:23 pm

Re: Not sure where to start really........

Postby Iceskatemum » Sun Jun 02, 2013 1:14 pm

Your feeling are perfectly normal when you are trying to manage chronic pain and exhustion along with keeping up with the real world and all it entails. All I can say is keep taking the pregabalin, you don't say what strength you have to take so if necessary talk to your GP about upping the dose .
Sorry if I've missed it ,but what other pain meds are you on ? The GP usually start you on a low dose of something and then rank it up if it doesn't work . I would be in a lot of pain from both a bad back (seems similar to your own ) & the FM and have found Slow release tramadol is very good for the Fibro pain or else you might be able to use a patch .

I know it is still 7.5 weeks until end of term but just keep it as a target and try your best to keep going as I know how important this is for you . Just concentrat on yourself & the job and forget everything else , you can catch up on that another time. You can use the time over the hols to have a think about what you want to do , hopefully you can use the itme to establish a better routine that doesn't leave you so tired .
If needed we are all here for you either in the forum or as a PM. so don't feel alone.

Good luck
Iceskatemum
UKFM Regular
 
Posts: 1599
Joined: Thu Jul 12, 2012 4:20 pm

Re: Not sure where to start really........

Postby Tempest » Sun Jun 02, 2013 3:11 pm

Thanks for the reply - to be honest I've not even seen my GP since the diagnosis as it was the rheumotologist that put me on the quine but that made me really ill and my gynae told me that I shouldn't be on it as it was far too strong and has too many side effects and to come off of it (it's a drug for lupus and I got the impression from the rheumatologist that it was a 'suck it and see' kind of approach in that it could make me feel better or could make me feel worse).

I'm on 75mg on pregabalin in the morning and 150mg at night. I increased it to the 150 at night a couple of months back but it's not made a difference.

The neurologist that I'm being referred to is apparently a specialist in 'myalgic' conditions so I feel that I should wait to see him rather than going back to the GP to change meds. My GP told that me that I couldn't possibly have fibro and I should stop reading the internet so I'm not keen to go back (to be honest what with working full time I'm not even sure when I would go in all honesty)
Tempest
UKFM Member
 
Posts: 10
Joined: Thu May 23, 2013 7:23 pm


Return to Where to Say Hello

Who is online

Users browsing this forum: No registered users and 3 guests