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The UKFibromyalgia Forums • View topic - Hi Everyone



Hi Everyone

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

Moderators: perseus, *Lisa*, FluppyPuffy

Hi Everyone

Postby nikkinoo » Tue Jan 21, 2014 1:13 pm

Hi to all,

I've just joined and had a diagnosis of fibro 2 weeks ago, after 2 1/2 years of telling doctors and specialists something wasn't right.
I have chronic kidney disease and due to the fibro I have raynauds and a bad case of restless leg.

I still don't really understand what all this is about to be honest, I was referred by my nephrologist to rheumatology, was told I had raynauds and mentioned screening for autoimmune conditions, I was then discharged without been told and after months of waiting to hear from someone, to shed some light on why I had all of these symptoms, I went to my doctor in tears to find out I was diagnosed by the rheumatologist I saw at the first and only appointment I had!!!!

I could not believe this was happening, I was diagnosed and not told and left with no help. Still I haven't seen anyone other than my gp who is trying her best and given me amitriptyline which is doing nothing and tramadol, which eases pain but I ache where the pain was before taking them.

I don't even know how bad my fibro is, I suffer with pain everyday, ache, exhausted, sick, headaches, weakness, major fibrofog as they call it, I cant remember anything and I struggle getting my words out a lot and slur my speech, very embarrassing, and forget what I was saying if I get distracted during a conversation. They are just a few but loads more, my partner used to say is it possible for one person to have all these things, he understands now as do I, as to why I have these symptoms.

I struggle to prepare meals, cant shop on my own as I cant push the trolley very well or carry heavy bags, and also struggle to cut up my food some days. Does anyone else suffer like this?

I don't work, I used to but was off too much, and now I'm supposed to be a carer for my future mother in law, which I struggle with, sometimes I wonder how I'm going to cope everyday for possibly the rest of my life.

Any advice would be much appreciated!! please...
I apologise for the long post too.
Nice to know your not alone.
nikki xx :-)
Last edited by FluppyPuffy on Tue Jan 21, 2014 3:06 pm, edited 1 time in total.
Reason: Split into small paragraphs for easier reading.
Before you assume, learn the facts... Before you judge, understand why... Before you hurt someone, feel... Before you speak, think... This is my message to all who do not take the time to understand what we go through.
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nikkinoo
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Joined: Tue Jan 21, 2014 11:20 am

Re: Hi Everyone

Postby FluppyPuffy » Tue Jan 21, 2014 3:30 pm

:welcome: to our little FibroFamily Nikki :cow-wave: :cow-wave: :cow-wave:

I've split your post into smaller paragraphs to make it a little easier to read as quite a few of us on here struggle when it comes to reading larger blocks of text.

How you're feeling at the moment is fairly typical of what happens after you have been told you have FM. Whilst there is the initial relief of finally getting a name for what is affecting you, it then gets swamped by the realisation of what FM is, and that it is going to be with you for the long term. You need to give yourself some time for things to sink in and settle down, then they will start to make a little more sense and you can start moving forwards with finding the best way for you to live with the condition. It's also not unusual to just be seen by a rheumi for the one appt where you are given your dx, then be discharged back into the care of your GP. Some do feel it necessary to see a few patients again, but not always. If you feel you need to see the rheumi again, you could always ask your GP about being referred back to them, altho usually your GP can help with any worries, questions etc.

If you have a look and a read around the forum, you may fond it helps you discover and understand a little more about the condition. By doing this, you may come across some suggestions to try out that could help in some way. You'll also find that, whilst FM affects us all so differently, at some point along the way, most of us have experienced similar symptoms and problems to those you are juggling with at the moment. I've been part of the club for almost 14 years and have lost count of the number of times I've been in a similar place to where you are at the moment :( :( :(

How long have you been taking the Amitriptyline?? If it's for a similar length of time since you were dx'd, then you may not be feeling any benefit from it yet, as it usually needs about a month to fullt get into your system and take effect. It could also be that the dose you're currently on may not be quite right for you, and could need a little change for it to help.

Anything you want to know about just ask, and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave:


If your dog doesn't like someone, then you probably shouldn't either
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FluppyPuffy
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Re: Hi Everyone

Postby nikkinoo » Tue Jan 21, 2014 3:47 pm

Hi FluffyPuppy,

Thank you for your reply, I've been on amitriptyline for the 2 weeks, I was put on it a few years ago after been told I just had depression, which I have had before but its a completely different feeling. I am seeing my GP again next week, she said she wouldn't send me back to the same rheumi again, as she felt he should have contacted me, she knows of a few other people I could see and also considering sending me to a pain clinic.

It is difficult getting my head around having another long term illness, as I know my kidney disease is progressive and function has drop a lot this year. I will admit I was relieved to find out there is something wrong and I suppose as you say I will learn to figure things out in time :-)

I will have a read and a look around, thank you again.

x
Before you assume, learn the facts... Before you judge, understand why... Before you hurt someone, feel... Before you speak, think... This is my message to all who do not take the time to understand what we go through.
User avatar
nikkinoo
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Posts: 36
Joined: Tue Jan 21, 2014 11:20 am

Re: Hi Everyone

Postby FluppyPuffy » Tue Jan 21, 2014 4:02 pm

Definitely ask for the referal to the Pain Clinic, they can help make quite a difference in some cases. I'm coming to the end of my time with them in my area (been with them for almost 6 months), and have got so much out of it, much more than I thought. The one big help I've found has been acupuncture, it made a massive difference to my IBS, and with that not draining me, it meant I had just that little bit more about me to manage other things a little better, and with me being less :too-upset: :too-upset: :too-upset: it also rippled out to help how things were with my family as well.


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

Re: Hi Everyone

Postby nikkinoo » Tue Jan 21, 2014 8:13 pm

Will speak to her and see if she can do that for me... :-)
Before you assume, learn the facts... Before you judge, understand why... Before you hurt someone, feel... Before you speak, think... This is my message to all who do not take the time to understand what we go through.
User avatar
nikkinoo
UKFM Member
 
Posts: 36
Joined: Tue Jan 21, 2014 11:20 am


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