New here, not new to FM

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New here, not new to FM

Postby IsaFieryPhoenix » Mon Jul 01, 2013 12:45 pm

Hello all,

My name is Isabela, I live in London. Last November I got diagnosed with a severe case of Fibromyalgia, I was in the hospital at that time for 3 weeks already after I woke up one morning and was not able to move anything on my right side, nor walk/sit, or do anything myself. My boyfriend got me to the A&E who then admitted me, for tests and check-ups.

After a lot of tests (blood, MRI, CT scans, urine, the works) 3 weeks later they were not able to find anything, yet my situation did not improve. Because they could not find any reason why this was happening the doctors who were "treating" me came with that I was making up my symptoms and problems, and that it was in my head. I had to see a psychiatrist, who would assess me and take me to the psychiatric ward. I declined to see any form of psychiatrist at that time because I knew, as did my friends and my boyfriend, that I was not making it up. Even physiotherapists were saying that it was in my head, and that I could move if I wanted to, yet if I moved it gave me so much pain that it fell like I was being operated on without any aesthetics.

Thanks to the daughter of one of my roommates, who has Fibromyalgia herself and got diagnosed 2 years ago, she told me about Fibromyalgia and how it was found out with her. She told me that the doctor who diagnosed her worked in that hospital and that we might not have heard it, because usually you only hear about Fibromyalgia when either you or one of your family/friends has it. I made sure to get my second opinion from this doctor, and every day I had a battle with the doctors who treated me, trying to force me to see a psychiatrist, they even thought they could play my boyfriend and myself out against each other. They would ask me if they could call my boyfriend to keep him posted, I said that was fine, and they called him and told him that I needed psychiatric help, and that there was nothing wrong with me. Then would come to me after they called him, and tell me that he agreed with them that I needed psychiatric help, and that there was nothing wrong with me.

Little did they know that when he ended the phone call with them, he called me to notify me of what was said. They even put me on anti-depressants without my permission, to make me "see sense". I discovered it because as a teenager I used to be on different forms of anti-depressants, all of which gave me allergic reactions, even one made me end up in the hospital having severe repertory problems, and I got like a severe drug addict.

I was getting those problems again this time, and the doctors told me that they were not giving me anything that would cause this (but how would they know if they did not even ask me if I was allergic to specific drugs?), again they told me that I was pretending to have allergic reactions, just to stay in the hospital longer, because I wanted my second opinion. 4 weeks after I got admitted in the hospital I saw the doctor who had treated the daughter of my roommate, and he did his checks, and tests, and after 30 minutes (!) he diagnosed me with a case of Fibromyalgia that he had not encountered in his 30 years of career of being a rheumatologist that severe.

I do not have one specific spot that just hurts sometimes, I have my entire body aching all the time. It is worse when it is colder, and my worst case scenario is that I either cannot move at all, and my boyfriend has to take care of me (get me food, drinks, to the bathroom, clothed, undressed, wash/bath me), the best case scenario is that I can use my walking stick. I do not have a few symptoms, I have all the symptoms, even the ones that they do not put on the information leaflet. Now I have also been diagnosed with a severe case of PTSD (I am starting to hate the word "severe") due to a lot of trauma's in my past, and according to my Specialist I am a 26 year old in a 90 year old body. But to my opinion even 90 year olds walk around much better than I do, as well as physically and mentally.

The painkillers I was on, did not work for me, they did not make the pain more bearable, and according to my Specialist there is nothing else they can give me but the ones I was on, except for morphine, which I am on now, but only when the pain is at it worst. I used to swim at school and really loved it, my Specialist said I should pick that up again, but I can't now, because if I cannot even make it out of my flat, and walk around properly, how am I going to get my way to the gym/swimming pool across from where I live? It is not like I have the money for it either, or for a cab all the time.

I cannot work in a public setting, with other people, due to reasons I rather not wish to talk about at this point, but it has got to do with my PTSD, and therefore I started my own business, but that is not picking up. Apparently my birthmother had Fibromyalgia as well, and my Specialist believes that even though it has not been proven, it is possible that she "transferred" it to me, and in combination with my past trauma's it got more activated than hers, they discovered it with her when she was 48.

And the DWB is not granting me DLA, for which I have to go to the tribunal one day (I saw in another post the waiting list for this is very long). I just want to be able to share experiences and stories on here with like minded people, and people who are going through the same thing as I am. And maybe make a new friend or two.

I probably wrote too much here, and too much information at one go, I am sorry for that. New to the site, forgive the "noob".

Kind regards,

Isabela
Last edited by FluppyPuffy on Mon Jul 01, 2013 1:10 pm, edited 1 time in total.
Reason: Split into small paragraphs for easier reading.
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Re: New here, not new to FM

Postby LouLou » Mon Jul 01, 2013 12:53 pm

:wave: Isabela

Wow you really have been through it. I'm so shocked that the doctors were trying to play you and your boyfriend against each other as well and trying to do things you didn't agree to. That's just awful!

IsaFieryPhoenix wrote:I do not have one specific spot that just hurts sometimes, I have my entire body aching all the time. It is worse when it is colder


That's the general feeling when you have FM, though I tend to have pain all over I have certain parst which can be really bad on their own lol. I think that's why the medical profession have so much trouble diagnosing FM, because it is different in everyone and affects everyone differently.

IsaFieryPhoenix wrote:I am a 26 year old in a 90 year old body


This made me laugh lol I'm a 30 year only trapped in a 90 year old body, pleased to meet you lol.

Anyway, this forum is a fab place to chat/make friends/ vent/ share tips and advice etc. So welcome again and look forward to speaking with you on here
xx
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Re: New here, not new to FM

Postby FluppyPuffy » Mon Jul 01, 2013 1:34 pm

:welcome: to the forum Isabela :cow-wave: :cow-wave:

With your post being so long, I've split it into small paragraphs so it is easier to read as quite a few of us on here, myself incl, find reading large blocks of text difficult.

There is lots of info and advice on here, so have a look and a read as you find your way around, you may come across some helpful suggestions to try out.

Meds~wise, there are other types to try apart from painkillers to try and manage your condition. This linky tells you more about them http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx It's not unusual to find that you end up on a cocktail of things to help mkae things a little more manageable. Have you asked your GP about being referred for something like physio or hydrotherapy?? I know you've mentioned about financial concerns, but with something being done thru NHS, you may be able to access some help with getting to and from appts that could make things a little easier.

For the majority of us, the pain and symptoms are widespread and diverse, and the weather seems to have an effect on most of us as well, making our capabilities fluctuate. And it's not unusual to have other associated conditions as well.

Don't worry about the length of posts as most of us have made lengthy ones along the way. Anything you want to know about, just ask and we'll try to help you with it :cow-wave: :cow-wave: :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.

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Re: New here, not new to FM

Postby denys » Mon Jul 01, 2013 10:43 pm

Hi and :welcome: to the forum :cow-wave: write to PALS as you cannot be medicated without your permission, nor can they play you and your boyfriend off against each other whoever sanctioned this needs struck off :shock: :shock: :shock: :shock:
Denys

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Re: New here, not new to FM

Postby shazq » Wed Jul 03, 2013 3:55 pm

:welcome: to the forum Isabela :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.
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