Hello lovely fellow poorly people!

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

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Hello lovely fellow poorly people!

Postby stoatonaboat » Fri Apr 20, 2012 1:49 pm

Thought I might dip my toe into the water and say hi, since I'm in bed with a flare up an can't do much else right now!

I live in Lancashire. I'm 35 and a part time solicitor. I used to be full time, but...oh you know how it goes! I'm fortunate to have an understanding employer. I started with weird symptoms about 3 years ago - tingling hands and feet, palpitations, numb face, poor circulation, feeling far away from everything. This gradually developed into pain - in my hips and legs to start with. This spread to my arms and now roams as it sees fit. My muscles are stiff and mornings are a nightmare. Though I have no official fibro diagnosis (as far as the medics will go is 'chronic widespread pain - I'm finally seeing a rheumotologist soon so I hope for....something! A diagnosis would be handy for work.), I've been on Amitryptiline for 9 months, followed by Cymbalta, followed by nothing (side effects were horrible so I had a wee break), followed by ami again (it stopped working within the month) and since this flare (3 weeks in :-/), I'm on the Gabapentin train. I'm not too keen so far. I'm so dozy - and have an interview for promotion next week. Excellent timing.

Other than my colleagues, I don't tell many people about my illness. I tried to tell a friend and she didn't believe me. This hurt deeply as we're close friends. Seems my brave face really is too good - perhaps I should take up poker?

I'm single and don't really feel well enough for a new relationship. It would be a different story if I had an established relationship, but I only really have the energy to concentrate on me. No kids, no pets, nothing so much as a plant depends on me for its survival. This is both good and bad, I suppose. I have some good friends who help me through. I keep putting one foot in front of the other. My house is a bombsite, to be honest. I'm getting a cleaner!! I hardly cook, which I used to love.

I'm as active as possible when not in flare-up. I used to love to ski, sail, hike, climb, do yoga etc...I've had to curtail a lot of this. This breaks my heart, as it is what I live for. I dared to get back on the slopes this year after a 2 year break. It hurt, but I skied gently. It was wonderful, but a little sad at the same time. I used to be that girl flying down the black run, whooping. I am trying to learn to look at what I can do, rather than what I can't. I know I should count myself lucky to be walking - and I do. The fear of how much worse this could get affects me deeply.

I have deep tissue massages, physio (NHS and private), acupuncture (lapsed, need to get back into it) and spend a stupid amount of time in bed. I work from bed 2 days a week. I hate pacing. I am not one of life's pacers!

This all started at a very stressful and sad time in my life. I lost my father and found him dead. I broke up with my fiance (he had anger management issues). Life was tough. I got through it - then - bam!

OK, that's enough me, me, me. I'd love to meet anyone in my area with a positive outlook (which I do try to maintain, contrary to the moaning above!) or who has similar interests or who knows of any good alternative practitioners.

Cheers,

Stoaty X
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Re: Hello lovely fellow poorly people!

Postby FluppyPuffy » Fri Apr 20, 2012 2:34 pm

:wave: :wave: Stoaty and :welcome: to the forum :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

Sorry to hear what you're going thru at the moment, hope it isn't too long a wait for you to see the rheumy and hopefully get a name to call all your various symptoms :fingerscrossed: :fingerscrossed: :fingerscrossed:

There is lots of advice and info on here, if you have a look round you'll come across all sorts of suggestions that you may find useful/helpful. There is support for each other as well as :bear-dancing: :bear-dancing: :bear-dancing: when someone has some good news :squirrel_nut: :squirrel_nut: :squirrel_nut: A bit of :crazy: :crazy: :crazy: :crazy: :crazy: gets thrown in as well, just to help out now and again :mrgreen: :mrgreen: :mrgreen:

The reaction you had from your friend when trying to explain about the possibility of FM is one that a lot of us have had as well :( :( :( When it happens to me these days, I work on the basis that it says far more about that person than it does me, and if they cannot accept me as I am, then maybe they're not really the sort of person I want to know. Not a pleasant way to think, but unfortunately rather sad but true in my case :shooting: :shooting:

You're in good and only slightly :crazy: :crazy: :crazy: :crazy: :crazy: company on here, as we all understand how these problems make us feel. Anything you want to know, just ask and we'll try to help you with an answer :bear-dancing: :bear-dancing: :bear-dancing:
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Re: Hello lovely fellow poorly people!

Postby masonsbarms » Fri Apr 20, 2012 4:28 pm

hi stoaty i live in lancs also got a diagnosis in feb after long time back and forward to docs

i also had a very upsetting an selfish reaction from who i thought was a very good friend

turns out after much explaining she will not except how i have changed in what i can and cant do
with the help of this site i am getting better at living with fm
there is always someone to answer or support you
if you want to you can send me a message and maybe have a chat

i have a great husband and son but they admit they dont know the extent of this horrid illness

hope you feel better for your interview and that it gose your way xx
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Re: Hello lovely fellow poorly people!

Postby stoatonaboat » Fri Apr 20, 2012 8:18 pm

Thanks guys, it is nice to know that there are others in the same boat - well, not nice to know that others are suffering, but good to be able to compare notes.

There are a few avenues I'm interested in trying. I keep reading about trigger point injections and since these haven't been offered to me yet (actually, very little has been offered to me on the NHS, I've had to seek it all out myself), I'd welcome any info on those. Also wondering if anyone has had any success with counselling? I'm always up for trying new approaches.

Thanks again for your quick replies. Also nice to know there are some Lancastrians out there. Some of the treatment centres I've read about don't seem to be well represented in the North West. (The FM centres in Bristol and London look interesting).

Just trying to get the energy to drag myself to the pub. It's someone's birthday, but I look and feel like s***!

X
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Re: Hello lovely fellow poorly people!

Postby FluppyPuffy » Fri Apr 20, 2012 8:44 pm

There have been a few mentions of trigger point injections on here, these linkys may help
viewtopic.php?f=7&t=12412&hilit=trigger+point+injections
viewtopic.php?f=7&t=12021&p=136330&hilit=trigger+point+injections#p136330

Counselling seems to be becoming popular as well. Altho it doesn't help with the physical problems, being able to talk things thru and find a different way to approach/challenge things can help with how you generally feel.

The one thing to bear in mind when trying different things for conditions like FM is that, altho one treatment or med may help one of us, for others it may be of no use at all, and a fair amount of trial and error may be needed to find what is the right mix of things for you.

It's always worth asking about what may be available in your area as you never know what could help make a difference to you.
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Re: Hello lovely fellow poorly people!

Postby rosehip » Fri Apr 20, 2012 11:33 pm

hi and a big welcome . i am a newbie as well and i have been diagnosed 5 weeks now . hope you enjoy the pub xx
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Re: Hello lovely fellow poorly people!

Postby Melbi_UK » Sat Apr 21, 2012 11:21 am

Hi Stoaty x

I too live in the North West :-D I had to quit my teaching job 3 years ago. mainly due to depression and anxiety attacks, but was also coming home from work feeling ridiculously exhausted, aching and going straight to bed to sleep. Struggled every morning to wake up, get up due to stiffness so in the end I was having to set my alarm for 5am just so I could get out of the house for 8am.

I attend counselling, it is nice to be able to talk about all the symptoms I'm experiencing without the guilt that my family and friends would think I was going on and on about it. It doesn't help the pain or other symptoms but is a good way to get out all the frustration, anger, despair etc. I have now just been referred for CBT, so will see how that goes. I attend a Fibromyalgia pain management clinic that is also a support group, this is at our local hospital in the physio department and was organised by the rheumatologist, who diagnosed me, wrote to my GP suggesting what treatment to give me, gave me 2 injections, one in each shoulder then discharged me! This suggest to me that she could offer no further treatment or advise. But she did suggest part of my treatment to the GP that regular injections in any areas causing severe pain should be done. I don't like having them but have to in my shoulders just so I can move my arms and hands. Doctor keeps offering them for my knees but do we really know what the long term damage of these injections might do? I have a supply of the stuff they inject me with in the fridge so I can just pop down to our GP surgery and have it done straight away (in between patients)

I too was always very active but mainly due to working full time, bringing up 2 children and keeping house, not to mention my social life. All of it ended so suddenly.

I also struggle to pace myself, to the annoyance of my GP and physiotherapist :yikes: I'll push myself way beyond my limit as I am still trying to battle FM and lot let it take my life over completely. I go for walks daily, even when in pain, I pick my granddaughter up from Nursery School everyday and look after her every afternoon and cook a meal for all the family. I keep the house clean and tidy, but always end up in tears with the pain and sheer exhaustion. My daughter's friend's mum has FM too and has just been given a wheelchair. This terrifies me.

I'm just too scared to give in to it.

I think the best thing to do is ask your GP to refer you for counselling and physio, this opens the doors to other treatments, support. Once you are on the NHS system for counselling they offer so much more too, I've been told that as soon as I feel up to it I can go and work (voluntarily) in any of the GP surgeries, hospital or medical centres to see how I would cope with being back in work, but they also assess you while doing the work and support you. I'm not sure how this would help gain paid work unless an employer is willing to take someone on who is prepared to get the phone call 'I can't make it in today', or 'I need to go home'. or lol, 'I need to have a break now as I need to pace myself'.

I'd strongly recommend holding on to your present job for as long as is possible, they seem very understanding which in this day and age a new employer has so many fit and healthy people he can choose from (despite the Disability Discrimination Act)

I'm going to have to stop typing now as my left wrist and hand is agony.

Melbi x
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Re: Hello lovely fellow poorly people!

Postby millymoodoo » Sat Apr 21, 2012 12:46 pm

Hi stoaty

I have had one treatment of the tender point injections and although i had relief unforunately it only lasted for approx 2 weeks!! I am due to go into hospital again as part of a trial for a repeat course of the injections though this time it will just be 50% lignocane and 50% glucose (last time there were steroids in the injection). I have severe crohn's disease so i take enough steroids so i wasn't happy about being given more!!! The next course of injections will be repeated after 2 weeks so i am keeping my fingers crossed for some relief!! I am not going to lie the injections are painful and i had about 14 done last time but by doing them 2 weeks appart i am hoping it works. I am having this done through the pain clinic, my gp was very accomadating when i asked to be referred to the pain clin and since seeing them my pain is better controlled, i am on fentanyl 100mcg patches and dehydrocoedine which i use for the crohn's. I am also on Lyrica (which i am not getting on with at all) and ammys!!! Hope this is of some help to you, but please ask if you would like to know more! I live in the East in Lincolnshire!!

Milly xx :-)
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Re: Hello lovely fellow poorly people!

Postby denys » Sat Apr 21, 2012 2:38 pm

Hi stoaty and :welcome: to the forum :wave:
Denys

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Re: Hello lovely fellow poorly people!

Postby stoatonaboat » Sun Apr 22, 2012 11:08 am

Hi, thanks everyone. Especially those it hurts to type.

I did attend a pain clinic in Kendal once, but it wasn't very useful. Lots of stuff about meds, work and mental attitude. I didn't learn a lot and they didn't recall me, so I've stuck with my GP, who is sympathetic and relatively malleable (I do tend to be a bit pushy at the Drs!!).

Interested in people's experiences of trigger point injections. If I could get something to release my forearms and thighs, it would help me to exercise more. I'm really missing climbing and want to climb gently at the local wall. It's quite a stretchy activity and good for flexibility. Then again, I had to stand up for 2 hours yesterday and now I'm in leg pain :-/ Moving about has to be better. I'm beginning to hate my bed!

Oh, I have had corticosteroid shots in my hip for bursitis - made worse by the fibro, I reckon. They work for a few months. Can't have too many a year due to the risks to bones and connective tissue. The needle is scarily large too!

Have a nice Sunday. I must do some revision for this interview!

X
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Re: Hello lovely fellow poorly people!

Postby shazq » Sun Apr 22, 2012 1:44 pm

:welcome: to the forum :wave:
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Re: Hello lovely fellow poorly people!

Postby stoatonaboat » Mon Apr 23, 2012 8:41 am

Agh, if this is a flare up, when do I get a flare down? Never felt this bad before. So weak, so achey. Dr not in til Weds. Interview this week and can't think straight. :(
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Re: Hello lovely fellow poorly people!

Postby FluppyPuffy » Mon Apr 23, 2012 9:44 am

Can't say how long it will last I'm afraid :facepalm: :facepalm: We're all so differently affected by it :facepalm: :facepalm: The worries about your interview may be the root cause of what you're going thru at the moment. Hopefully when it's over things will start to settle back down for you :fingerscrossed: :fingerscrossed: :goodluck2: :goodluck2:
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