New guy from Egham. Hi!

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New guy from Egham. Hi!

Postby UnderSiege » Sun May 24, 2015 5:11 pm

Hi. Besieged one here from Egham (hence the name)

I'll try to keep this a short introduction but I have a habit of sometimes using many words where few will do (something to do with my family just not getting it perhaps?)

Anyway, I'm 38 and have had arthritis, which was misdiagnosed for a long time until the docs got it right, for 20 years. I've had a bunch of other ills come up over the years (more of that in minute) but I didn't connect the dots until last week... I just started a group physio course (not necessarily for the arthritis but a load of all over muscle pains that seem to accompany it but with no relation to it. Sound familiar anyone?) and the physio there mentioned to me that as well as taking the advice and exercises home maybe I should also look online to find out more so I did...

Which led me via symptoms of CFS and ME to a variety of Fibromyalgia pages which upon a good long read, self doubt and more reading, led to an epiphany and a visit to the doctor... who upon being asked if he thought I had Fibro said: "Given the longevity and variety of your symptoms, I wouldn't be surprised at all BUT I personally, 1: Don't really 'believe in it' (Fibromyalgia I guess) 2: You already have the painkillers co-codamol, Fencino patches, Methocarbamol and Feldene gel for pain (and proton pump inhibitors for the 'excess acid', Stemetil for 'labyrinthitis', Tegretol CR for 'epilepsy' and Mirtazapine for 'depression') 3: As you've read about it you know there is no cure and know what you need to do to help yourself (my family are very unsupportive to the point of outright abuse) now get out of that toxic house and away from my toxic family (more on them in a minute) and get a job... (can't leave house as council won't house me even though I'm on ESA, it's a long story... and can't get job as too knackered and hurt which makes me too unreliable for an employer)

Yep he actually said that... so my first question(s): has anybody else had this reaction? and is this as close to a diagnosis as I can expect?

Btw, in case you're wondering, I hit upon the Fibromyalgia because the symptoms when I first read them were a revelation, they were a match made in hell... I also wouldn't go as far as claiming CFS/ME because that seems so much worse (I hear that a bad case combined with indifferent care has killed ppl) I mean, I can actually do things... On a good day I can go and trim the hedge for example and other pretty active things but OMG, do I ever pay for it... again, finding articles on the spoon theory backed up what I've been thinking for at least 10 years...

Then there's my family who I have to live with but would really rather not. Lifts to the hospital for Sacro-Iliac joint injections aside, they are not supportive at all... Worse still, it's not been unknown for my father to throw cold water on me early in the morning to get me up (after years of abuse this actually resulted in my being arrested for assault on my father in Oct 2013 because I'd had enough and snapped) or my super fit and healthy (and compassionless) younger brother to punch/throw stuff at me for the same reason. When I tried to explain the spoon theory to my mother it turned into jokes about spooning... a common thing this, making jokes about serious matters to deflect or distract but not so funny really when all the unrelenting bs has led to attempts at self harm and worse (I say attempts because the very concept of self harming appals me)

I really don't have a lot to live for or look forward to at the moment so the extra push towards panic attacks or big crashes really doesn't help. Add to this the fact that I have been the one individual who has done the most to help my mother with her (failing) student letting 'business' and her totally out of control hoarding which often tips me over the edge (out of 19 rooms in the house only 5 are remotely useable...)

Anyway, I think that's enough for now and hope I haven't darkened anyone's day too much... there is one bright side... I have cats!

In advance, thanks for reading and any advice or tips. Have a good one!

PS. If this rambled too much, sorry... I had the worst crash in years last Monday and I'm still not right.
UnderSiege
UKFM Member
 
Posts: 112
Joined: Mon May 18, 2015 1:26 pm
Location: Englefield Green (up the hill from Egham) UK

Re: New guy from Egham. Hi!

Postby *Lisa* » Sun May 24, 2015 6:53 pm

Hi & :welcome:

Im just working out where to start :crazy: people have different experiences with there GP's alot of them like you im afraid to say have the same problem. The main thing we need is an understanding supportive doctor but many are not in some cases from there *beliefs*

Part of fibro is to self manage but this can be helped by therapy like CBT then Counselling for any anxiety and depression. There is many oher therapies like massage, accupuncture and hydrotherapy that can help. Things like Pilates, light swimming and walking and any exercise you can tolerate daily is good.

Problem is you need the information and support to be able to self manage. This is scarce. You mainly get told to loose weight and exercise and that about it!

The pain clinic have resources if you ask to be reffered.

The GP should rule out anything before a diagnoses of fibro which they tend to do by blood tests. They can refer you to a Rhuematologist or in some Nuerologist for further examinations and diagnoses.

Family are another problem area in alot of fibro's its sadly very commen for families to not understand even tho you have tried and dont get the support you need. This mainly is because of the variation of the illness, the invisibility and lack of knowledge.

I suggest you see another GP

You can also speak with you physio about fibro. They should be well educated on it and feel for muscle tension and tender points. In fact it was my physio that spoke with my GP suggesting a possible fibro diagnoses.

The physio can write or call your GP if they suspect fibro then you should get investigated if they do not listen to you.

Good luck!

On a good note i have 1 budgie :chicken-dance: 1 dog :dogrun1: and 5 guinea piggys guinea_pi_1 guinea_pi_1 guinea_pi_1 guinea_pi_1 guinea_pi_1


:mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen:
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*
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Re: New guy from Egham. Hi!

Postby UnderSiege » Mon May 25, 2015 4:17 am

Hi Linda.
Thanks for your reply.

I didn't mention that my family have always been like this. They just seem unaware or oblivious to anything I go through even though I try my hardest to keep an open line of communication going (I made that sound like they live far away lol but it really is like that even though we are all in the same house)
After several unexplained seizures, I was actually diagnosed with epilepsy at 17 (big shock let me tell you) after many tests which were inconclusive, my neurologist actually talked to me about my life and from that came up with the theory that my seizures were caused not by flickering lights etc but by undue and overwhelming stress. So I could well claim here that my family are actually trying to kill me, knowing full well what the outcome of pushing me too far can be...
It sounds melodramatic but when you've reached the point of utter exhaustion and frustration and had a loaded air rifle in your mouth you get to seeing things in a different light (I didn't pull the trigger because I doubted it would kill me but would most likely leave me needing spoon feeding and nappy changes the rest of my days and I actually value my independence)

I'm just too tired out, angry, hurt and yes, hateful right now to make decent decisions on anything. I spent the rest of the day since my first post like a zombie, absolutely done in and with brain fog, being picked on and picked at. I went to bed at about 6-7 pm (that's why I'm awake now at 3am, feeling a lot better) but I do vaguely recall telling my mother that if things don't change I'm out of here (that means a life on the streets for me) I'll clarify an earlier point: the council or local disabled/vulnerable housing association cannot house me even though I was offered a place and being on ESA and awaiting a decision on PIP I am entitled to. Why? I have a mortgage. Or more accurately, when my mother needed to buy her father's old house in 1997, she couldn't get a mortgage so she wrangled it (with my permission) in my name but she pays for it. So, my name is on a mortgage and as far as officialdom is concerned I therefore have a house/home of my own so they won't help me.... this has messed up a lot of things... As has the fact that osteoarthritis/fibro is so unreliable: some days I'm superman (not quite but it's good to feel good-ish) and most days I'm... crappyman

Add to all these issues the fact that I'm running out of time with things... I have no significant other (I always say who'd want me?) and y'know, it hurts going onto town and seeing everyone else so happy and together and getting on ok (comparatively, I know, everyone has their problems) and knowing that kind of happiness and contentment is out of my reach... and knowing I have to go back to that house (it's not a home) to all the horrendous hoarding mess and the crap attitudes of my family (my best friend and I call them my shamily because ones own flesh and blood should never be this low)
My ex girlfriend posted on facebook a while ago this thing about how depression isn't about weakness, it's about having been strong and hanging in there too long with no support and just running out of juice... That was how I felt years ago... how I feel now, I just don't have the words for but it's crossed my mind a couple of times in the last week to just give up and visit the railway line or river (yes, those places specifically) and end it there and be free of hurt and thinking.

Now I'll mention this before I go... I actually quit my antidepressants last month (I know, you're thinking "aha, that's why you're depressed!") my reason was this... they weren't working. I feel the same now as I did when I was taking them. Also, my shamily go on and on about them like a pill and an occasional meal thrown my way is the end of the responsibilities towards my wellbeing and somehow makes treating me like manure or sewage ok (I usually have the foulest mouth but I'm trying to reign it in so I don't offend anyone or get banned) So I stopped the antidepressants because they didn't work and I see no sense or progress made in taking 'fake happiness' to excuse or cover what is inflicted on me by others. I also at the time left a long note for them saying as much and some money I'd used to pay for stuff when mother forgot her card, she paid the money back but made a big show of it... my point was I want to contribute but the torture/torment I'm subjected to is unnecessary as was paying me back... so I tore the money up and left it with the note on the grounds of 'money is also no substitute for happiness or normal, decent compassionate and human standards'
No, I'm not crazy, just under a lot of stress and strain and trying to get a message across...

Ach, it's been a long one again so I'll stop now.
UnderSiege
UKFM Member
 
Posts: 112
Joined: Mon May 18, 2015 1:26 pm
Location: Englefield Green (up the hill from Egham) UK

Re: New guy from Egham. Hi!

Postby UnderSiege » Mon May 25, 2015 7:59 am

Humph.

You see what I did there? I saw your name was Lisa, scrolled down and started typing and all of a sudden your name is Linda....
Sorry about that... that's brain fog that is... and it's been getting worse lately along with the insomnia and broken sleep and then sleeping too long when I finally do get to sleep (usually around 4am, often later still) and waking up even more tired...
It's tough to deal with having a brain that's getting increasingly sieve-like considering my memory used to be watertight (everyone I know used to call, email or text me to ask me to clarify details they'd forgotten)

I wonder what faculty will decline next... :crazy:
UnderSiege
UKFM Member
 
Posts: 112
Joined: Mon May 18, 2015 1:26 pm
Location: Englefield Green (up the hill from Egham) UK

Re: New guy from Egham. Hi!

Postby *Lisa* » Mon May 25, 2015 11:54 am

Dont worry about the name :lol: I'll PM you
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*
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Posts: 3905
Joined: Sun Sep 07, 2008 2:01 pm


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