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Fibromyalgia's not going to kill you...

PostPosted: Tue Dec 13, 2011 12:39 am
by Tantalus
Anyone else bloody SICK AND TIRED OF HEARING THIS?!?!?!

Yes, I realise that it's not going to physically kill me but mentally I'm not sure how much longer I can deal with the pain :cry:

And How do you get a doctor to listen to you???

I'm really aggivated by my doctors surgery today (have been for a while but it's peaked today). Last week I started having a flare up so went to see a doctor. Previously I'd constantly been told to take over-the-counter meds which don't work. Finally they prescribed me some Tramadol! I was hopeful but ended up being disappointed. They might as well have prescribed me a placebo :-? . During the same appointment I asked about crutches because at the moment I cannot walk unaided. They said the NHS was unable to provide me with any. I'm not sure I believe that.

Today I ring my surgery. No appointments as usual but the duty doctor will call me back. 6 hours later I finally get a phone call. I tell him everything. The verdict: Stop taking Tramadol and start taking over-the-counter pain killers!! Surely that's just a backwards step??

Then he said the most irritating line: Fibromyalgia's not going to kill you, you just have to learn to live with it.

These doctors really don't understand or appreciate the pain we are in. I'm 23 and I have to walk with the aid of crutches :cry: This is not how I imagined my young adulthood :cry:

I will be changing doctors in the morning but I fear I'll just receive the same response no matter where I go.

Any tips on the right things to say or do to get them to listen??

Re: Fibromyalgia's not going to kill you...

PostPosted: Tue Dec 13, 2011 12:49 am
by denys
If you can find a fibro friendly doc then you've won half the battle, have you asked for a referral to a pain clinic or CBT which may just help you deal with the pain a little better, I'm waiting for an appointment for CBT and although I'm not expecting miracles I'm hoping it may help even a little bit :fingerscrossed:

If you have a support group in your area then contacting them and asking if they know of a good doc might help, good luck

Re: Fibromyalgia's not going to kill you...

PostPosted: Tue Dec 13, 2011 1:46 pm
by Roseofsharon
Changing your doctors is a good first step Tantalus. Hopefully you will get a fibro friendly doctor. As far as crutches goes ask to be referred to your local phyios. They may or may not decide that they will give you crutches. I recently spoke to my physios because I had a problem with the walking aids that I use, and I was told that at my age they didn't want me dependant on walking aids, and wouldn't even consider crutches for me (Sorry I am just relating my experience). Physios though are the ones who decide to give you crutches or not, not the GP.

:fingerscrossed: :fingerscrossed: Things improve with a changed doctor. Best of luck.

Re: Fibromyalgia's not going to kill you...

PostPosted: Tue Dec 13, 2011 5:07 pm
by Ldyalb
I'm also 23, also hate the 'well at least it's not deadly' line.

No it just means that 18 months in I can expect another 60 or so years of horrible pain. Who wouldn't be happy about that! :roll:

You definitely need a better Dr and some decent pain relief. It can take a while to find meds which work for you. Many people with Fibro take a low dose antidepressant like amitriptyline to aid sleep and to help the chronic aspect of the pain, with things like over the counter meds plus something like codeine, tramadol etc to help throughout the day. The NHS Choices site and Patient.co.uk site both have good articles on Fibro and treatments which can help.

Wrt crutches. I do have a walking stick, don't use it often, it does hurt the hands/arms a bit but I do find it helps in wet or icy conditions as I fall over enough as it is in dry conditions. I still fall and trip with the stick but it does reduce some of the risk. I purchased it online, did a bit of research into what size etc I needed (I'm 5"1 so needed to buy a special short people stick, if you're very short or very tall you may need to purchase a non standard stick, (many are height adjustable to a degree, mine is for people 5"3 and down to about 4"10 I think). You can also purchase crutches online as a last resort - but do your research first.

You could ask your GP for Physio - they can advise on crutches as well as giving you some stretches etc which may help, esp if you suffer badly with stiffness. You could also try and ask for a referral to an Occupational Therapist - they can advise on any adaptions to your home, activities of daily living which may help you.

Re: Fibromyalgia's not going to kill you...

PostPosted: Tue Dec 13, 2011 9:48 pm
by tonydin
please dont take offence but i dont understand the use of cruches with fibro , cruches are desighned to take the wieght of a broken or damaged limb , used in other ways only produce more probs with posture ect , i dont see how they can help with pain wjile walking , if stability is the concern then one or two correctly adjusted sticks would be a better option

as has been said the pysio would be the best to advise

tony

Re: Fibromyalgia's not going to kill you...

PostPosted: Tue Dec 13, 2011 10:11 pm
by denys
Hi Tony, I use crutches, given to me by a physio. They are used as an aid for balance in my case and I was shown how to walk upright so not to affect my posture detrimentally.

I use 2 to make sure I am as balanced as possible and so avoid those horrible moments when I used to fall regularly :yikes: :yikes: :yikes: :yikes: :yikes: the left crutch and my right foot move together and the right crutch and left foot so not to take weight off an injury but as a balance aid if that makes sense :?: :?: :?: :?: :?: :shock: :shock: :shock: :shock:

Re: Fibromyalgia's not going to kill you...

PostPosted: Tue Dec 13, 2011 11:29 pm
by Ldyalb
I use my stick for balance too. In addition to poor balance caused by Fibro I have poor balance caused by Hypermobility and the lovely tendency of my knees to give way and my ankles to sublux (partially dislocate). And in addition to this my Dyspraxia means I am extremely clumsy with poor balance, poor co-ordination and poor spatial awareness.

So a combo of all 3 makes me at risk of falling/slipping and tripping.

I don't use my stick much due to arm pain and the fact I get some right dirty looks when using it (doesn't help I regularly get mistaken for a schoolgirl, recent examples inc refused paracetamol on grounds I look under 16, offered free glasses by an optician for being still at school (she thought I was 17), random people at the Drs queue sympathising with me for having to go to school after my appointments as an assumption and when my Mother had difficulty getting a train home from Torquay in April she was arguing with train staff with myself and my boyfriend (also 23, 9 days younger than me but we were both 22 then) that they needed to either pay for a Taxi from London to Lincs for her, or provide us with a hotel, or pay a taxi to take her to my flat in London, they actually asked her how old her two children (me and bf) were! :shock: (really doesn't help my boyfriend and I look alike)). But I digress...

However in wet and slippery conditions, particularly icy or snowy weather, I do use my stick as I find I slip and fall more and the stick means I only fall over once or twice in a short trip, rather than 4-6 times. Yay.

Fibro: a right pain in more ways than one!

Re: Fibromyalgia's not going to kill you...

PostPosted: Wed Dec 14, 2011 12:49 am
by tonydin
yep denes if your balance is that badley affected i can see the benifit of crutches , just dont think they should be used as a starting point esspesialy in a young person because thers npo way back if you become dependant a adjustable stick is much better

pysio suggested i should use them flatley refused as to obstructive for every day taskes like work , saw her on a bad day and she made a completely weong call from looking at me that day ,

i dont have balance issues apart from :beer: :beer: :beer: if you keep falling then crutches are the only real support

ldyalb
how you doing , hop the stress has improved now your taking stock of your carrear options , something good that you can manage will pop up out of the blue when you least expect it , and youl be in a much better position to cope , dont be embarrised about useing the stick when you need to , and i admire you for not relying on it all the time ,

tony

Re: Fibromyalgia's not going to kill you...

PostPosted: Wed Dec 14, 2011 1:32 pm
by Ldyalb
I've invested in some wellies this year to help with ice and snow as well. Not that there's been any in my part of the world yet, typical. Used them for Bonfire Night though to cope with the muddy field and it helped. Stress has improved, started Counselling last week and now realise I've been in denial about the full extent of my problems for a while (not properly telling friends etc) so the Counselling is helping me accept everything so I can move forwards. Once I've sorted my mental health out I can better think about career options and what I'm actually going to do with my life. Or that's the plan anyway :-)

Doing DLA forms at the moment, saw CAB lady yesterday - she gave me guidance but said I was best to fill it in myself as my ESA50 form was one of the most comprehensive she'd seen, still a perfectionist even when I'm down! Just working through all the notes I took in the meeting to fill it in and do the extra info I'm providing. My 71 year old father had to remove me from my bed yet again this morning as I couldn't get myself out. I have to :lol: else I'd just :cry: !

On the plus side I'm exchanging Christmas presents with my boyfriend on Friday ready for Christmas day. Excited! :hohoho1:

Re: Fibromyalgia's not going to kill you...

PostPosted: Wed Dec 14, 2011 3:12 pm
by denys
Totally agree Tony and they do get in the way when trying to do something, recently I've started dropping one when trying to pick something up in a shop and having strangers pick them up for me :shock: :shock: :shock: :shock: I get asked if I need some help by shop assistants a lot which is nice but sometimes you only want to browse :lol: :lol: :lol: :lol:

Re: Fibromyalgia's not going to kill you...

PostPosted: Thu Dec 15, 2011 12:47 am
by Tantalus
I saw my new doctor today and she is a lot better than my previous doctor(s). She listened to me for a start! As soon as all my notes are transfered over she wants to see me again for another "proper chat".

In regard to the crutches, If I don't use them then the next day I am immobile. As in physically cannot get out of bed. When I use the crutches (which takes some of the pressure off my legs and back) I still ache at the end of the day but I can do the same the very next day. I can't live 1 day on and 1 day off for the rest of my life because I never know when work will call (I own my own photography business so can get called out the same day... unfortunetly, due to my deterioration I may have to give this up :( ). Admittedly after using them for long periods of time my arms and shoulders ache a lot more but those little metal sticks have helped me immensely. I couldn't manage without them.

And at 23 to say I'm reliant on crutches.... Makes me sad :(

Re: Fibromyalgia's not going to kill you...

PostPosted: Thu Dec 15, 2011 1:11 am
by buxbunny
I'm glad to hear support getting from your gp now congrats.

Sorry to hear about your business suffering but hopefully you can find somone you trust and delegate tasks to them on off days?

Re: Fibromyalgia's not going to kill you...

PostPosted: Thu Dec 15, 2011 12:10 pm
by Ldyalb
Glad you've found yourself a better Dr Tantalus. Just knowing you have someone who will listen to you and believe you helps a lot and will make future GP appointments less stressful for you.

Hopefully she can help organise some better treatment for you once your notes have transfered over.

Re: Fibromyalgia's not going to kill you...

PostPosted: Fri Dec 16, 2011 9:14 pm
by newey
i also use crutches 2walk but i have a back knee aswel if im goin long distance or in2 town which is along way i use a power wheelchair which is my life saver, i got myslef a fold away walkin stick so i could have it in a bad and just get it out if needed but i find my balance is even worse with it i cant get used 2 usin it any1 with any tips :crazy: i feel like im goin mad most days i forget everythin and the worse thing i do which iv done since a kids is walk in2 door frames and walls :dunno: i also feel sad as im only 32 was my birthday yesturday and i hate the fact i need so much help from husband :hugs: merry xmas every 1 :xmastree1:

Re: Fibromyalgia's not going to kill you...

PostPosted: Sat Dec 17, 2011 11:55 am
by denys
:birthday1: for yesterday Newey hope it was a goodish day for you :hugs: