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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.

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Hi Everyone

Postby Maggimai » Thu Mar 10, 2011 12:24 pm

:wave: Hi everyone, My Names Maggi, I'm 43 year old, I live in Ryton and I work part time in Newcastle as a Social Worker in the Older Person's Team at a hospital. I am happily divorced and live in with my 3 Kidults and 2 cats :D .

My eldest son is 21 and currently in his final year at university studying a BA (honors)in History & Politics, its a stressful time for him as he is busy doing his dissertation and has exams coming up; my 16 yr son old has ADHD and Semantic Pragmatic Disorder, he's currently struggling with the impending changes in his life (i.e. forthcoming exams, changes in his routines, learning to tie his shoe laces and tell the time and going to college etc) and is having audio hallucinations again (not as bad as last time as he's only hearing something scratching in the corner of his room when there isn't anything there; last time this happened it got so bad it ended up with 'the voices' telling him it was time to die and he ended up on an anti-psychotic drug for 6 mnths (when he was 9 1/2). ) He is highly sensitive, very loving / caring and worries constantly about everything and everyone. My daughter is about to turn 15 (in April), she has hearing difficulties and had major emergency surgery that lasted 4 1/2 hours on her back in May 2009 to remove a disc and calcium growth that was causing so much pressure on her spinal cord she couldn't walk. She is also managed to break her ankle 2 days before xmas the same year, sledging :roll: ). They are lovely kids, not much trouble but are a little spoiled ( think I over compensated when I threw their father out and divorced him 8yr ago) getting them to help out is a major struggle lol.

I was diagnosed with Fibromyalgia yesterday - I've never heard of it before. I'm kinda still reeling from it all to tell the truth :yikes: . I've been back and forth to my GP for about 5 year now with back pain, pains in my legs, shoulders, elbows, wrists, fingers etc, I was referred for physiotherapy at several times each time they would only look one thing at a time ie my back or my shoulder and wouldn't consider looking at it as a whole issue.

To cut a long story short I was sent to the pain clinic for different medication to manage the pain. My first appointment in October 2010 I was told I had mild deterioration in my spine and facet joint syndrome, the consultant suggested an injection into my spine to numb the nerve to the facet joints and I agreed without question ( I would have agreed to almost anything if it meant the pain stopped), I was placed on waiting list; I was offered to go in in Dec 2010, (same day as telephone call) as they had a cancellation but I didn't have anyone to stay with me other than my younger kidults, my eldest son was away with friends);

As I was told I needed an adult with me for 36 hours after procedure I had to decline (thankfully as it turns out). I was given a TENS machine to try 2 weeks ago and had this appointment with a locum consultant yesterday for a review. I got the impression the consultant I had seen originally was no longer working for there, anyway he challenged my decision to agree to the spinal injection, did 6 x-rays and spent 3 hours poking and prodding me ( I was bubbling like a baby by the end of it :cry: ). He diagnosed me with fibromyalgia, he told me to go to fibromyalgia.co.uk , request a copy of Dr Tai's lecture notes at the Welsh National Assembly Sept 2000 (Dr Tai also being my new consultant with a particular interest in this condition) and read them before my next appointment in 12 weeks; The problem is I can't generate a contact form on my PC for some reason to request these :pcsmash: . I'd be grateful if anyone could tell me where else I may be able to get a copy of these notes?

Where do I go from here is the question? :dunno: I still have a lot to learn about something I didn't know existed until yesterday :roll:
I'm worried he's changing my medication, at the moment I'm on slow release tramadol 200mgs bd and paracetamol as and when. He's changing it all, giving me Paracetamol 4 x daily (which hasn't worked in the past), putting me on Ibuprofen, a anti acid (1 pd) tablet to stop the terrible acid reflux I was getting) anatriptolene? (prob spelled wrong) soluble Tramadol and something else I can't remember - seems like an awful lot of tablets to take

.. and with my memory I'm worried I won't remember to take them regularly. With the SR tramadol I take them morning when i am giving my son his medication and evening when I am putting my daughters ear meds in.. through the day I am lucky if I rememberer to eat let alone take tablets :dunno: . Is this amount of medication normal? ? My friend said the anatriptolene knocks you out when you take them but the consultant said I have to take them at 7pm with a meal and I cannot under any circumstances go to bed to sleep before I make sure my 16yr old son is in bed asleep (sometimes this can be 1 or 2 am) as if I am not there making sure he stays in bed and tries to sleep he will stay awake until 4 /5 am and then not be able to go to school..

Everything seems so hard, I'm worried about telling my kids something I know nothing about and the impact this will have at an already stressful time for them. has anyone got any advice? My head is rolling :(
ps sorry for the rant
Maggi
Last edited by denys on Fri Mar 11, 2011 4:21 pm, edited 1 time in total.
Reason: smaller paragraphs to aid reading

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Re: Hi Everyone

Postby gizsam » Thu Mar 10, 2011 12:43 pm

hello maggi..and :welcome: ...you have landed in the right place for help and support.......

by heck,sounds like you have a lot on your plate and now this.....you arent alone and
there are plenty of links and advice on here,no matter how small the question you will always find someone will answer or point you to the right place to find it......

sounds like ypu are getting on the right track with meds it just takes time,i only found 6 months by accident oi never heard of it before,you will get there we our support oh and some of us are a bit crazy..so you may have a laugh or 2 on the way!!


cat x
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Re: Hi Everyone

Postby Maggimai » Thu Mar 10, 2011 1:22 pm

:lol: Hi Cat, thanks for your reply, it may sound mad but most if it is normal routine stuff to me, kids difficulties etc When I look back over the last 15 year and my friends bring up incidents with my kids I laugh but also wonder how I ever survived them :yikes: The answer is simple yet profound, i have some wonderful friends who despite the constant traumas that happen in my life, stand by me and support me the best way they can :). My kids are spoiled - but are polite and well behaved. They have had so much to deal with in their short time on this planet to throw this at them seems cruel. I am sure they will understand the basics though after all they live with me and my constant moaning about being wrecked and or in pain, in a way this will hopefully explain it to them in a way i don't seem to have been able to. I have printed the Spoon Theory as i think it sums up a lot of what I go through daily - minus the bruises (unless I've fallen over again which I do a lot of lol).
As for being crazy... well we actually have a family saying that all who enters our home is told.... "if your not at least a little crazy... you may wish to leave now..." :lol: and my friends told me my initials says it all... M.A.D. :penguin: :wine: :crazy: lol

I look forward to getting to know people who will not look at me with pity / sympathy but who will understand me. like i say my friends and the kids are great but don't understand how I can get so tired I've slept most of the weekend away but I'm still tired; or how there are times I'm in so much pain I can barely move but at other times I can decorate a room in a day... (knowing I'll pay for it later on)..

You (or someone else) may be able answer my next question: is this classed as a disability? I see info on claiming DLA - not that I wish to make a claim (though having someone clean the house would be a great help I don't think thats what it's intended for lol) but it would be useful to know work wise... and does this affect insurance policies / mortgages - I still have 20 yr on my mortgage eek! Oh and is there an easy to read site for the kidults to access if they want more information? (I'll stop now there are probably a million and one questions running around in my head... I just can't remember them lol)
:cup1:
Maggi

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Re: Hi Everyone

Postby denys » Thu Mar 10, 2011 2:49 pm

Hi Maggi and :welcome: to the forum, your kids can go on the family and friends forum and ask any questions they may have and we will do our best to answer them in a straightforward but honest way. There are books around that may help too. I'm not sure but I think FM is classed as a disability. It depends on how severe you have it. I'm classed as disabled with it as like you some days (not very many now unfortuantly) I'm Ok and others I cant move. keep looking around the site and hopefully we can help you to find the answers you need.

We offer support and comfort as needed and like to have a bit of a giggle too as you will see from some of the posts, cos if we cant laugh at our selves sometimes then we would cry :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
Denys

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Re: Hi Everyone

Postby FluppyPuffy » Thu Mar 10, 2011 2:55 pm

:wave: Maggie and :welcome: to the forum :hugs: :hugs: :hugs: Wow, you've got just a bit going off each day before the delights of fibro come into things :facepalm: :facepalm: I'll not even ask how many times you meet yourself coming backwards in the middle of it all :hugs: :hugs:

There is a lot to take in when you're told you have FM, so all those thoughts and feelings are what a lot of us have felt, as well as not knowing what it actually is that is wrong with us, as quite often the rheumy/consultant making the dx doesn't do a very good job of explaining about the condition. It can take a while to accept things, and it can take a while to find the right meds for you as well. If you're unsure about the meds the consultant has prescribed for you, then it might be worth a call or trip to see your gp for some clarification, as your gp probably has a better idea of how you are than the consultant who told you you have FM.

I've had a look at the site that was suggested to you, and it only seems to partially load in. The only bits I can access are the bookstore and the contact us page :dunno: :dunno: I've also tried googling various combinations of the details you were given, but can't find anthing relating to the consultant or lecture notes :dunno: :dunno: If you're wanting to find out more info, then these linkys might be somewhere to start



There may be references to the notes you were advised to request, unfortunately I'm rather foggy and away with the fairies at the moment, so probably not in the best sate to be looking :oops: :oops:

There's a lot of info on here that might help you explain what it's like to your kidults, One For The Non-Believers is good at getting across what it's like with FM. I think I've rambled on at you enough for now, anything you want to know, just ask and we'll try to help you with it :wave: :wave: :wave:


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Re: Hi Everyone

Postby Maggimai » Thu Mar 10, 2011 5:03 pm

Hi :wave: Fluffy puppy many thanks for all the information, :flowers:
I rather like this description "you meet yourself coming backwards in the middle of it all" I've not thought of it but it kinda sums up the way I live my life.... Today for instance I get a letter for my 16yr old son's audition on 31-03-11 but on the letter it states "our records show you will be attending an interview with Student Support services on Monday 14th March 2011".... :yikes: ahhhhh We haven't had a letter about this, so I spend 30 minutes speaking to various people in the college to find out when the letter was sent and who the appointment is with... Oh they emailed him, only he has adhd and doesn't ever check his emails, so I eventually get him to find it and there it is in amongst 984 other emails.... :facepalm: Then he's rowing with me because I'm telling to delete them as he doesn't read them... :dunno: in between this row I'm still on the phone to the college trying to re-arrange this interview (god knows what the woman thought) and my daughters shouting at me to dye her hair as she's at a party tonight and I've been totally wrecked all week so not been able to do it... :swear1: Lord I could scream
Now my son is panicking as he has to sing a song for his audition and when he gets stressed I get no sleep because of his difficulties. I have an up hill battle between now and 31/3/11 but at least it'll be out of the way before he starts his GCSE's which in itself is going to be a nightmare... :crazy:
Then I have to try to work out how to tell them about this diagnosis without scaring the living daylights out of them g....r...o...a...n!
I honestly think my :? head will explode at times ... (sorry rant over lol) think I need a :wine: but can't because of the Tramadol :facepalm:
I am looking forward to meeting people on here and finding out more about this condition so I can try to work out where I am going
regards Maggi x

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Re: Hi Everyone

Postby denys » Thu Mar 10, 2011 5:08 pm

Whoops stress city or what no wonder you feel bad :hugs: :hugs: :hugs: :hugs:
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Re: Hi Everyone

Postby shazq » Thu Mar 10, 2011 8:04 pm

:welcome: to the forum Maggi. :wave: :wine:
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Re: Hi Everyone

Postby FluppyPuffy » Thu Mar 10, 2011 8:26 pm

Meeting myself coming backwards in the middle of it all was how I used to describe my life in the days pre-FM :facepalm: :facepalm: What with work, the various things I took DS to when he was a toddler, as well as fitting the mundane, but necessary domestic duties as well. And that was just with one offspring :shock: :shock: :shock: Not sure how I would have managed with any more :dunno: :dunno:

I hope you don't have too bad a time with DS in the run up to his audition. Is it for a show or band or something?? Hope it goes well for him :fingerscrossed: :fingerscrossed: :fingerscrossed: Same for the dreaded GCSEs. Mine has got the first practical for his GCSE Catering on 1st April, so we're having fun with the deciding of recipes and practises at the moment. Today's dessert didn't quite work out so he's got to find an alternative now :roll: :roll: :roll:

As for the :wine: :wine: :wine: on here it's guilt and calorie free, and doesn't cause problems with any meds, so you can at least indulge with us and not have to worry :clap: :clap: :clap: :clap:


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Re: Hi Everyone

Postby nutty1 » Thu Mar 10, 2011 10:11 pm

:wave: :welcome: :yikes: feel worn out reading all your probs ,do you have a good dr.maybe he could explain to your family .and maybe he could help with home help or somethin. g similar . :fingerscrossed: you get some support soon . :blowkiss: :flowers:
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Re: Hi Everyone

Postby carrieokay » Fri Mar 11, 2011 12:19 am

Oh Maggi, I do feel for you! And I love the word "kidults", so true.. Not that long ago I had 5 teenagers inc one with special needs and I know exactly where you're coming from. Like you I don't know how I survived it - I think the key is pacing yourself. If you have to be up till 2 am perhaps you can fit in a daytime nap? And sod the housework. I wish I'd trained my kids to be more useful when they were home, but I've only just got a proper diagnosis after 36 years of coping somehow. Anyhoo, I'm on your side kid, and so glad I found this forum!
Virtual cheers, :wine:
Carrie

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Re: Hi Everyone

Postby budda » Fri Mar 11, 2011 2:42 am

Hi Maggi, hope you get help soon. :hugs:
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Re: Hi Everyone

Postby Maggimai » Fri Mar 11, 2011 1:01 pm

:wave: Everyone, fluffy puppy I'm not sure what DS means? :crazy: my son is going for an audition for a preforming arts course at college he wants to be an actor and he's quite good at it but lacks a lot of confidence, his adhd and spd mean he has added problems coping with all the stress and changes he is facing at the moment. He is also bricking it as he has to sing for the audition :yikes: , I tell him he's good but again, what do us mums know lol
Thanks for the welcome carrieokay and budda :D I'm already finding it a great help having people who know what I am going through, not pity, not sympathy but understanding because you know what it's like. Take last night for instance, didn't sleep to well, I think just about every part of my body hurt from my cheeks to my toes, I'm stiff as a board today and my bladder seems to have gone into sudden overdrive again, it's taken me 4 hours to find the energy to get dressed and now I'm dreading going food shopping (but we starve if I don't).... My friends try to support me, but they also say you'll get better soon, only I don't... yeah there are some good days when I wake up and feel as through I could take the world and her aunt on... those days I've always tended to go for it big style, blitz the house, put furniture together etc etc, But and its a big BUT I do it knowing I will suffer for it badly over the next several weeks, I'll be exhausted, in terrible pain and I will feel like sh*t! Some days it'll be so bad I can barely get out of bed let alone make it up and down the stairs, I struggle to get dressed through pain and tiredness, I'm incontinent of urine :oops: and I can't remember a blooming thing :facepalm: , these are the bit they don't get, maybe now I can explain a little better to them, point them to the site to read up on FM etc...
fluffy puppy I'm :D to know I can drink again, being on slow release tramadol has seen me alcohol free for 6+months :crazy:

I've also done a lot of thinking, not telling the kids won't work or be fair on them. I also promised them faithfully when I split with their daddy I would never lie to them again to in order 'protect them' from something they have a right to know. It's not life threatening, it's life changing and thats the message I will give them :lol: we can work together to make sure they help out more but don't take over the role as carer, we all do that one way or another for my 16yr old son and at times it can be very hard on his siblings :( . It'll take a few weeks for the letter from the consultant to get to my GP but I'm making a start by meeting with my team manager on Monday to discuss my work pattern and the possibility of working from home when I need to :), The Cons said I have to eat no later than 7pm, but my work pattern from Mon to Wed is leaving for work at 7:45am and not eating till I get back and cook dinner for me and the kids at 9:30pm (or sometimes not eating because I'm to tired and just need to sleep) so changing this can only be a good thing - for me and the kidults :D .
Time to shop now
thanxs again
Magix
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Re: Hi Everyone

Postby FluppyPuffy » Fri Mar 11, 2011 1:36 pm

DS is the abbreviation we use for sons (dear son), DD is for daughter (dear daughter). There's a few more, but I can't think of them at the moment :facepalm: :facepalm:

Hope your son gets thru his audition :fingerscrossed: :fingerscrossed: I know what you mean about us mums no knowing, mine came in from school yesterday a bit down as his dessert idea hadn't worked out right. I'd tried to tell him about not being too upset if it didn't work out quite right (fried banana fritter with a coconut, fruity rice pudding-risotto thingy, I thought it might be a bit heavy :dunno: :dunno: ) but the disappointment was still there. So it's :fingerscrossed: :fingerscrossed: for today's practice - Summer Veggie Lasagne. If not, it's fish fingers for tea :fingerscrossed: :fingerscrossed: :fingerscrossed:

Personally, I think a straightforward approach to telling the kidults about FM could be the way to go. Mine has grown up with me like this, so just accepts that this is how I am. He was 3 1/2 when things started to appear, and is 15 this year. Getting them to help with things around the house could help make a difference as well. Mine has chores to do each day, and they need to be done before he can do what he wants to do, if not he gets dragged off whatever he's doing, and only allowed back when he's done what he needs to do.

Hope it goes well with telling them about things, :fingerscrossed: :fingerscrossed: the take it on board without too many worries and upset :fingerscrossed: :fingerscrossed:


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Re: Hi Everyone

Postby Maggimai » Sat Mar 12, 2011 12:16 pm

:wave: Fluffy Puppy, thanks for explaining the DS DD thing, it's easier than putting my son / my daughter etc :lol: I'm sure I'll pick up the abbreviations etc as I go on 8)
Well I told the kidults and the younger 2 didn't seem to bothered by it all (more bothered by the happenings in Japan,) I reassured them this wasn't terminal, that we know what we are dealing with because we have been living with the symptoms for 5+yr and the best thing to come out of it will be I intend to speak to my manager and wouldn't be working the late hours I do anymore (in fact this made them happy as they hate it when I don't get home till 9 /9.30pm, cook them dinner and fall into bed without eating as I'm too tired :( ) :)....

My eldest DS didn't say much,, then at about 2am this morning after he got back from :twodrinking1: with his mates, my 6th sense told me to go find him... he was very sad and :cry: :cry: :cry: :cry:
He said he didn't know what to do and was frightened, he's in his final few wks at Uni (then all thats left is for him to complete his dissertation by mid July0. He's recently been to a jobs fair thats organised in the Uni by the Uni, unsurprisingly there were few jobs on offer and what there was were in call centers... there was however recruitment officers promoting Jobs for a year in Australia, Japan, America New Zealand etc etc This involves paying them a fee then they pay your air fare, have someone there as your main contact, they find you a room in a hostel (and pay for that and your food etc until you have a job) and help you find work etc... I remember him saying he was interested in going to Australia more than anything when he came back from the job fare but then he said he was moving out last year and nothing came of it so I didn't think anything of it :yikes: The thing was my little bombshell yesterday frightened him, he also has many other insecurities relating to the break up of my marriage (ie loosing / being separated from people he loves) .. and really worries about me being alone :(
21n yr old and he was sobbing in my arms like he used to when he was little and upset :( ... Anyway by 3.30 am I had managed to convince him (I think?) that he should go, there are no prospects for him in this country, he wouldn't loose his real friends as friendship knows no boundaries of time space, land air or sea.. (not to mention the wonders of modern technology / skpe :wink: ), the love I have, his siblings and the rest of our family have for him will be with him where ever he is whatever he's doing and that he should go...
I agreed to ask his daddy about the relatives out there in Aussie land, email my friend's daughter who is out there with her partner (she went to N/Z for a year then instead of coming back went on the Aust) and to look into how's best to do it, requirements for Visa's / work permits etc... All the time all I could think was my baby is def growing up and not just talking about leaving home for the first time, but leaving the country / time Zone and going to the other end of the world.. my heart was crying cos I'll miss him terribly'; but then happy for him, knowing its a wonderful opportunity not to be missed and it'd see him turn from my 6ft2 kidult into the wonderful young man he is destined to be :blowkiss: , how could I not be happy for him to have this opportunity :D :yikes:

Then I think the SW in me got to thinking that it'd be a good idea to research the information thats out there in regards to telling your friends and family / children about your diagnosis... And looking to see if anyone has put an easy read leaflet together - if not maybe looking into how I could do this :) :P.... my brain was in overdrive at 4 am, I was doing laundry and washing dishes etc... mad times indeed :lol: :lol:


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Maggimai
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