Hello everyone!

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

Moderators: perseus, *Lisa*, FluppyPuffy

Hello everyone!

Postby Nas88 » Wed Mar 22, 2017 8:48 am

Hello everybody!

Okay, I shall try not to waffle too much although I will probably will do and I do apologise for this in advance. My problems started years ago and I did that typical thing and told myself that it was just me being lazy and I need to carry on (Gym mentality). I had to carry on working to earn money to keep family going so I had to just work but the problem got so bad that I just couldn't carry on this way and my wife forced me to go and see the GP and thank goodness I did, it wasn't just that, I generally felt unwell, had IBS, mind fog and bad fatigue.

When the pains began, they were underneath my feet and I had been to the doctors whom had shrugged it off as weight related problems and later on I was diagnosed with Diabetes. I had pains long before I was diagnosed with Diabetes and I know I am a little on the heavy side but the pain sensations were abnormally strong, I did try to explain this to the doctors and they kept shrugging it off as overweight problems for so long. Soon I did have a proper talk to a Doctor whom was willing to listen and referred me to get assessed at Physiotherapy and they in turn referred me to Podiatry. It was here that I was stuck for over a year trying inserts and stretches and the Podiatrist told my that what was causing the pain was hypermobility, everything we tried unveiled no positive results at all. Then I was referred to the MSK team (whatever that is) and they said that I need no surgical intervention and discharged me after conducting ultrasound scans under my feet and X-rays to check for misaligned bones in my legs. Yet again we hit a brick wall and nothing was found, at this point I notice that pain is beginning to move and then spread and it hurts to walk in pretty all muscles in my legs now and I struggle to write more than a few lines at a time (4/5) before it hurts too much to continue, doing anything physical causes severe pain and very quickly at that too and my back just hurts all the time, I am either in constant pain now or severe discomfort all over my body. I was referred back to Podiatry once more trying out the same things but I wasn't there for as long as I had been before and I was discharged. Back to the GP and a mental breakdown at work a few months back and I had been referred to a pain clinic and a Rheumatologist, the Rheumatologist took my bloods and conducted a wide variety of tests whilst the pain clinic referred me to a counsellor, this sort of pain as you know causes some mental problems, according to her I am suffering with extreme stress, depression and anxiety, I have been this way for so long now that I don't even know it and it feels normal to me to feel this way and a couple weeks ago the counsellor said that my symptoms seem to resemble that of Fibromyalgia. Months after the Rheumatologist requested my blood tests I had an appointment with her Monday 20th March 2017 and there she said the same thing, that I was officially diagnosed with Fibromyalgia.

The mind fog or Fibro fog is always how I have described it many many times in the past to my Doctors and Diabetes Nurse, its as though everything is foggy around me and I cant see straight. I can never think straight, my short term memory problem is beginning to make things even worse now, I am always shattered and again just like the mind fog I have always told the Doctors and my Diabetes Nurse about this and they always told me that it may be due to my Diabetes or some other health problem. I feel like a soulless dreg, In social situations I cant think fast enough to actually be socially engaging, from behind a screen isn't so bad because I can stop and think before I say/type anything and even then, as with this post, change it or add things to it as I go along because I have to seriously think and thing long and hard. Its bad at work because I have to be able to think quickly and I just can't and many times I miss things that go on around me and I forget to hand over important happenings. I always have to write things down in my little book and even that causes me agony so I sometimes decide not to write it down and try to keep it in my mind, verbally repeating it to myself and I know, sometimes people look at me as if I am crazy, talking to myself but what else can I do? I have to really focus and work at 150% of my capacity and this knackers the heck out of my, day in day out. Its really hard to have to work and just keep focused and to be honest its only security guarding so its just so hard, its a relatively simple job to do, yet I struggle throughout my days at work. I need some form of coping mechanism otherwise I will make a cock up and will possibly be fired from work and given my current situation I cannot afford for this to happen. I feel like I don't really have a sense of humor any longer, I used to be witty and funny but I am no longer this way.

Cramps, CRAMPS! Jesus Christ! the cramps! they are bad, sometimes severe. I forgot to mention about my fatigue, its so bad sometimes that when I wake up its as though I haven't slept at all, as if I have been awake for 24 hours and I know how it feels because my job involves me doing night shifts so yeah.

In life I just will myself on, I just don't know how I do it, I think I keep everyone around me in mind and heart and spur myself on but then again I don't quite know if its this that spurs me on. I cant do things that I used to, I used to be a gym rat and I was in really good shape now but I look in the mirror now and every time I do I feel disguised at myself and how I have become, its like after many years someone looks in the mirror and says to themselves, gosh you have let yourself go. I used to prefer to walk everywhere, even to the point that if my friends and I were going somewhere local and there wasn't enough space in the car, I would actively get out of my seat and tell everyone that I would walk, I would just plug in my headphones and walk away, let the music whisk me away to another world, I can't even do this anymore. Even playing video games, it would be an escape from the troubles of reality for me but with all that button pressing its difficult as games get progressively more and more fast paced and I also find that I just cannot think fast enough to react in some situations to react. I have to use cheats like slow down and speed up, slowing down everyone and everything else around me and just be able to move around at a normal pace so that I can react. Even typing is hurting me now, god knows how many times I have stopped to take a rest from typing, my fingers, hands, forearms and even my left shoulder is hurting as I type.

My rheumatologist did say that she would want to refer me for Physiotherapy sessions and that was it. I have been for the last 7 Months on Gabapentin tablets and I was taking 2 three times a day and it would only slightly take the edge off the pain but did nothing really, I also was on Duloxatine or how ever it is spelt, I stopped taking this because of a side effect. The counsellor says that I am and have been suffering with extreme stress for now and also depression & anxiety.

The question is, what now? where do I go? Me saying that I am massively struggling with work is a huge understatement. I know that I have to keep working otherwise no one else is in a position to earn money, my wife looks after our Autistic child and she has been on a course in college but she wants to take a year out to relax before going back in again to do a few more courses to make her more employable and my child will be in full time school and she is very very tired as she looks after him and helps me too. Also we are just about to move out and I have to be able to pay the mortgage. it would be nice to cut down on the amount of hours I do as I work as a Security Officer with long days. Is there any financial help? also I have been in to see the doctors prior to me even going to the Rheumatologist to speak about getting a blue badge, as you are aware, getting around is rather difficult and this would at least bring me some ease when I am out and about but she said no. I now want to know that with what I have been diagnosed with, can I get one?

I do try to go out as often as I can but that isn't without consequence, utter agony and despair. My wife tries to limit me going out but because of my Diabetes I know I have to keep moving, even without Diabetes I know that keeping on moving is the best option otherwise I would become mostly bed bound and this would do nothing t help me and would only hasten my decline. So knowingly I decide to go out and suffer for it. I have been feeling over the last few weeks and I am beginning to slip away and I feel as though I am beginning to weaken and even begin to give in, after years of fighting I am tired now, I am overwhelmed and I feel as though I can't keep going on like this.

That's as short as I can keep it. It only took a few years to get here and now I really don't know what to do, I am really struggling at work, everyday is a battle, not only with the utter agony but with the mind fog and fatigue as it has progressively got worse but what am I to do?
Nas88
UKFM Newbie
 
Posts: 2
Joined: Tue Mar 21, 2017 11:03 am

Re: Hello everyone!

Postby *Lisa* » Wed Mar 22, 2017 1:18 pm

:welcome: Nass88

I hope by letting all of this out it made you have a little sense of relief? although your in turmoil in what to do for the best in your situation. Dont worry about the length of a post, whatever you need to get out just say. It may take me a while and other to read but its better out then in! :-)

We all have a story of our fibro journey and understand your situation. I do feel the Diabetes mimicked alot of the fibro symtpms to why your were not diagnosed sooner. It can also work the other way around. When your diagnosed wth fibro its hard to be heard when something else rears its ugly head as fibro mimicks that of so many illness and conditions.

I am glad you have found the forum, we are always here for advice and support.

Now, I understand your predicament. Your needing to work to pay mortgage and support family yet the work your doing is excasabating symptoms. You cannot cut your hours. So, there are a few things that come to mind. You can maybe look into another job with less pressure? (I know this can be hard but i thought i would say anyways) If you want to remain in this job then you need to take control of your health.

Its sounds to me that the pressure of the job and having fibro is causing you to be completely mentaly and physicaly exhausted. Also sounds to me that you have the chronic fatigue syndrome that comes hand in hand with fibro. This is just as dibilitating and hard to push through.

Your body is screaming at you to slow down. Have you got any holiday time you can take? The more you push the more you'll burn yourself out. So I do recommend a therapy called CBT (Cognitive behavioural therapy) this therpay you can ask your GP for, they can pass you onto a therapist on NHS.

CBT is based on the concept that your thoughts, feelings, physical sensations and actions are interconnected, and that negative thoughts and feelings can trap you in a vicious cycle.

CBT aims to help you deal with overwhelming problems in a more positive way by breaking them down into smaller parts. You're shown how to change these negative patterns to improve the way you feel.

Unlike some other talking treatments, CBT deals with your current problems, rather than focusing on issues from your past. It looks for practical ways to improve your state of mind on a daily basis.


Now you can have CBT for a wide rang of problems and one being chronic pain as well as any mental health like anxiety/depression. It helps by teaching you techniques. These can be for things like pacing, knowing your limitations and working on stresses.

This could be of help, they assess you first to see if they feel it is the right therapy for you and with so much going on in your life and pressures and pain I feel this could help your mind and put things into perspective. This is a natural way of working out life with chronic conditions. Worth a try!

The other things are, going back to GP and looking into other medications. Then there are therapys. If your able I think you would benefit each week from a massage. This will help body and mind to relax.

Blue Badge: If your not on any mobility componants of benefits then you can still apply, even tho you can apply yourself and explain walking difficaulties (can put in your diagnoses letters as support) I would ask your GP to write a small note confirming your in need of a blue badge. This I feel will ensure your eligability.

Benefits: As you work you can apply for PIP (personal independance payements) but there harsh! There is 2 componants. The daily activity and the mobility. For the daily activity side you would need to have care needs through out the day for things like help with washing / dressing etc.... The mobility side they have narrowed the goal posts.

Example:

MOBILITY ACTIVITIES

1. Planning and following journeys.
a. Can plan and follow the route of a journey unaided. 0 points.
b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points.
c. For reasons other than psychological distress, cannot plan the route of a journey. 8 points.
d. For reasons other than psychological distress, cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points.
e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points.
f. For reasons other than psychological distress, cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points.

2. Moving around.
a. Can stand and then move more than 200 metres, either aided or unaided. 0 points.
b. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided. 4 points.
c. Can stand and then move unaided more than 20 metres but no more than 50 metres. 8 points.
d. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. 10 points.
e. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12 points.
f. Cannot, either aided or unaided, –
(i) stand; or
(ii) move more than 1 metre. 12 points.

You need 8-12 points in total to get any moneys. If you feel you fit any of these critereas and feel you will score enough points then you can call DWP and ask for a form to fill.

This Im afraid is the only benefit I know of for working people with restricted mobility/illness and conditions etc....

As I said above there is a care componant so if you do have any care needs you can also put in a claim. Its doesnt have to be all day every day. It maybe when you get home from work each night as well as daily needs etc...

preparing and cooking food
eating and drinking
managing your treatments
washing and bathing
managing toilet needs or incontinence
dressing and undressing
communicating with other people
reading and understanding written information
mixing with others
making decisions about moneys

CAB link for help https://www.citizensadvice.org.uk/benef ... -eligible/

Have you checked to see if your eligable for working tax credits? https://www.tax.service.gov.uk/tax-cred ... /#/partner thinks this is the right one but if not you can look into the eligability online.

if you need any more help just let us know :-D
As a Public Moderator & Admin 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...Lisa
*Lisa*
MODERATOR
 
Posts: 3887
Joined: Sun Sep 07, 2008 2:01 pm

Re: Hello everyone!

Postby andysalisbury » Thu Mar 23, 2017 9:33 pm

Nas88

I am no expert, but my wife is going through the PIP process at present. The key advice I would give is; make sure you have documentation of every appointment or letter from Dr or hospital, if you do apply, do not trust the system, they are out to disprove anything you say.
Before you apply, speak to people here, there is lots of good ad
Vice.
andysalisbury
UKFM Newbie
 
Posts: 9
Joined: Fri Mar 17, 2017 11:24 pm

Re: Hello everyone!

Postby LindyM66 » Sat Mar 25, 2017 7:33 am

Hi Nas,

I hear EVERY word you say. I too work full time, and I have days where I feel totally and utterly ragdolled! Between the pain/stiffness/tiredness/mind fog - it's brutal!
Many people have bad experiences having applied for PiP. I didn't. I filled in the form- went for the assessment, and qualified for the standard care component. I didnt qualify for the mobility component, as I can walk 50yards with a crutch.
I also applied for a blue badge, and qualified for that too. And I'll tell you, what a difference that makes.
On receiving the blue badge, I applied for a disabled parking space - I was granted that!
You have nothing to lose by applying.

Much Love
Lindy x
User avatar
LindyM66
UKFM Member
 
Posts: 280
Joined: Wed May 04, 2016 8:30 pm
Location: Glasgow, Scotland

Re: Hello everyone!

Postby Nas88 » Sat Mar 25, 2017 4:38 pm

Hi
I do apologize for the late reply and thank you so very very much for your replies and support. I was assessed over the phone before going to the councilor and they recommended that over CBT, I have seen her thrice and nothing has been discussed in my case on how to manage myself other than to breathe. As I was typing out my post I almost had an Anxiety attack or something, it felt my mind and body were about to explode, I'm starting to loose grip after all the years constantly fighting myself and these symptoms day after day. I told the Counsellor about this and I was typing this away at a different place that I was working in. I work as a Relief security officer and I don't have many places to work that I can just relax and do things at my own pace.

In regards to the Pip I just don't think I will get it, I am mobile and have the ability to walk more than 200 meters albeit with a pram or using the trolley for support but I can walk without crutche, although I have to sit down many times when I am out and about to be able to go the places that I want to. Each centimeter of those meters is excruciating, as one of the repliers said (Sorry I cannot remember your name) is brutal! I am able to do a lot of things but yet again, at the cost of excruciating pain. I can't plan a journey, if it was for work I use a Sat Nav I bought for more than £300.00, not because I have the money to spare but because I need it out of necessity and I always take it with me because sometimes I have to drive far away (about an hour or so for work). Without that I don't think I could deal with driving that far. I just don't know myself all that well and I know its funny but I just don't. I don't really know what my limitations are really, days gone by are just a blur for me, a blur of physical pain and mental anguish. I'm not sure why it is this way but it is, I used to be funny and witty but not even this anymore, I really don't know myself anymore, I feel like a soulless golem or something.

I want to know if there is a Fibromyalgia organization or charity whom can help before I apply as I will need help with this? I forget so many things, even about myself and I need reminding or prompting on many occasions. Filling out this kind of report I would need extra time and support of my wife and someone whom knows what they are doing (not me)

I just don't want to give up work and the type of work I do are long hours (12 hours) I know but, a lot of the sites I work on are relatively easy (mentally) and don't require much brains really, I just don't think I could cope doing anything else really.

I went to go to see the GP on Friday (24th March 2017) and she didn't seem all that supportive when I mentioned about be possibly reaching to a point whereby working would become too difficult for me and she told me that I can apply for a Blue Badge online, she never mentioned anything about her being able to write me up a letter. However she did write me up a certificate for work to say for them to put me on light duties but again I feel that this may mean me working less and at the moment I just couldn't afford to do this.

I haven't mentioned about my son either yet, his name is Aadam and on the 9th of May 2017 he will be four, he is such a sweet child but he is Autistic and is much more physically active than anything else and it pains me because I cannot look after him as much as I could and should, I can never enjoy my times out with him because of the agony I suffer, I just returned from an indoor playground thingy place and I only had the ability to go up with him twice and that was it, I could do no more. He needs extra support and I just don't have the physical ability or as with a lot of the time, the mental capacity. I have the most wonderful wife and she looks after him and myself but I know that she will burn herself out, she is an official carer for my son but unless I get Pip, I'm not sure if she can officially register as a carer for me also.

Ill do some fishing around to see if there are any organizations/charities for me to go sit down and have a talk with them, see if they can sit down with me and help me go through the form and help me in obtaining a Blue Badge. I know that a Blue Badge would help me soooo much, when your suffering with this much pain, literally every little helps.

Ill end my waffling here lol, thanks so much for replying, It makes me feel good inside that there are others willing to just have a chat and help me. Thanks so very very much!
Nas88
UKFM Newbie
 
Posts: 2
Joined: Tue Mar 21, 2017 11:03 am

Re: Hello everyone!

Postby *Lisa* » Sun Mar 26, 2017 12:00 am

I have sent you a personal message.
As a Public Moderator & Admin 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...Lisa
*Lisa*
MODERATOR
 
Posts: 3887
Joined: Sun Sep 07, 2008 2:01 pm

Re: Hello everyone!

Postby susie901 » Fri May 05, 2017 5:29 pm

Hi all coming to this post a little late but I applied for a blue badge and was turned down, as I was offered the chance to appeal I phoned the council and they told me that I would have qualified if my doctor hadn't told them that fibromyalgia is an intermittent condition and not permanent. I have an appointment to see him on Monday but wondered if anyone had any tips to as to how to get him to change his mind. I have fibro for nearly 5 years I now cannot park outside my house without a disabled badge so have a 5 minute walk also if I had a badge I could park nearer work. This has really knocked me back any advice would be great. The lady at the coin I did say that if my doctor changed his diagnosise my application would go through
susie901
UKFM Newbie
 
Posts: 2
Joined: Wed Oct 08, 2014 9:06 pm

Re: Hello everyone!

Postby *Lisa* » Fri May 05, 2017 7:15 pm

Your doctor can always call a Rhuematologist within the local area/hospital and ask. We all know its chronic life long, sounds like your GP has been given mis information. Failing that I would look round the internet on articals to prove that fibro is chronic and print them off to show them.

They could always speak with a physio at the local hospital OR you ask t see another GP and ask them to fill form out. Hope it turns out Ok in the end for you :fingerscrossed:
As a Public Moderator & Admin 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...Lisa
*Lisa*
MODERATOR
 
Posts: 3887
Joined: Sun Sep 07, 2008 2:01 pm


Return to Where to Say Hello

Who is online

Users browsing this forum: No registered users and 2 guests