Not yet diagnosed but not feeling brilliant...ever!

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Not yet diagnosed but not feeling brilliant...ever!

Postby JemmaB88 » Sun Jul 17, 2011 2:43 pm

Hi guys,
I am new here, possibly prematurely as I have yet to be diagnosed.
I have been 'unwell' for a long time now. It all started, as far as I am aware, with IBS symptoms 3 years ago which, I think, was triggered by the separation of my parents. I was only 19 at the time and I had been in the middle of the troubles at home for 9 years or so. I won't go in to details but my mother suffered from agrophobia so childhood was far from normal and my father has some issues with alcohol so all in all, not a good mix.
I started developing IBS 6 months before my mother eventuallty moved out. I started seeing a doctor about it once I turned 20, and I was diagnosed with IBS. This got very aggressive, very quickly and I was losing blood after every motion, which could be upto 18 times a day (that was my worst day ever). I had 2 colonoscopies and numerous medications including daily foam enema's which I found utterly agonising. All the biopsies etc came back as normal and I was told, 'It's IBS, and there is no cure, so you need to learn to live with it'. I have been trying for ages to live with it! I tried all the diets, had blood tests to check for allergies. Everything you can think of.
I was having a terrible day 2 weeks ago. I hopped on the internet to search for some advice when I came across Fibromyalgia. I was shocked to the core as I read on and on. It was like reading about my whole life! I have pretty much all of the symptoms listed. The general aches and pains I always put down to not sleeping well from IBS. I permanently have a stiff neck and shoulder, but I had my shoulder stablised when I was 17 after dislocating it several times. I have some screws in there so I have always assumed that it was that.
I went to see my GB who was fab about it. She had seen me a year ago about depression and I chose not to go on to anti-depressants a I felt I was letting it win. She said to keep a close eye on how I feel but she felt I should seek some help. She ordered full bloods and I received a letter asking me to book an appointment to see the rhumatologist.
I just want to have a day where I feel 'normal'. Work aren't very helpful. I am an administrator for a company that is growing, almost out of control. I have someone starting this week to help me after 6 months of begging for help. I have to travel 25 miles to get to work which takes it out of me anyway as I have to drive and then I work for up to 10 hours. I am looking for another job much closer to home but I would love to work from home. Any ideas?
Anyway, sorry to go on and on. I needed somewhere to vent as my boyfriend tries his best with me, but I don't think he fully understands how bad I feel. My mum is brilliant but she is away from home and she has her own issues to deal with.
Thanks for reading if you managed to get to the bottom!
Jemma. :wink:
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby FluppyPuffy » Sun Jul 17, 2011 3:13 pm

:wave: Jemma :welcome: to the forum :wine:

Hope you don't have to wait too long for your appt with the rheumy :fingerscrossed: :fingerscrossed: Don't worry about having a rant, we all need to let things out :hugs: :hugs:

While you're waiting for your appt to come thru, it might help things if you start making a list of your various symptoms and problems, as well as any questions you think need answering, it's something a lot of people do so they don't forget things they need and want to discuss.

There is a lot of info and advice on here, even tho you're still waiting for a dx, there might be some things you find helpful in trying to manage things :fingerscrossed: :fingerscrossed:

Work wise, I know that when you have a dx, you are covered by the Equalities Act, which took over from the Disability Discrimination Act. Under it, your employer has to help with making changes to help you do your job more comfortably and effectively. As you're still waiting to find out what the cause of your symptoms is, I'm not sure how it would help you, so maybe seeing if there is anything in it to help you while you're waiting for a dx might be an idea :dunno: :dunno:

It can be difficult for partners to understand what we're going thru, but there are some bits on here that might help him have a better idea of what life is like for you. Have a look at "One For The Non Believers" and "The Spoon Theory". Altho they're geared towards FM, there could well be some similarities with how you are :fingerscrossed: :fingerscrossed: :fingerscrossed:

Keep us updated with how you're going on, and if there's anything you want to know, just ask. There are some others on here who are still waiting for appts to be dx'd and things, so you're in good company :clap: :clap: :clap:

When you do get your appt, try to have someone to go with you. Not only is it good for moral support, but having an extra pair of ears can help with remembering what has been said :grouphug: :grouphug:
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby denys » Sun Jul 17, 2011 3:14 pm

Hi Jemma, I'm moving your post into where to say hello,
Denys

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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby FluppyPuffy » Sun Jul 17, 2011 3:22 pm

OOoops, forgot to do that bit denys :facepalm: :facepalm: :facepalm: :oops:
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby denys » Sun Jul 17, 2011 4:19 pm

No probs, was trying to reply too but my internet went down :swear1: :swear1: :swear1: :swear1: so Jemma, :welcome: to the forum and I hope we can offer you the support you need :fingerscrossed: for your rhuemy appointment :hugs: :hugs: :flowers: :flowers:
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby JemmaB88 » Sun Jul 17, 2011 4:53 pm

Can anyone tell me what to expect for the rhumatologist appointment?
I took an online fibro criteria survey, and I got a WPI (just looked at this and it means widespread pain score) of 12 and a SS Score (Also checked this out and it means symptom severity score) of 9. Not sure if this means something or is complete rubbish. I won't include the link incase I am not allowed. According to this you have to score WPI 7 and SS score 5 to meet the fibro criteria as well as the usual trigger point exam.
What will happen at the appointment? Do I need to wear good undies incase I need to strip off? (This worries me a bit lol) Will I be able to drive home or will I be in agony after the poking and proding? I will need to get my boyfriend to get the day off work if I can't drive.
Thanks for the support, feel good about this forum already.
x
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby FluppyPuffy » Sun Jul 17, 2011 7:33 pm

Things seem to vary from rheumy to rheumy in how they conduct their consultations, and we've all had differing experiences. Hopefully we can give you a general idea of what could happen to try and prepare you for it.

When I had my appt, which was in 2004, I was asked questions about my symptoms, what sort of pain I had (shooting, stabbing sort of description) and how it felt (throbbing, burning, pulsing types of descriptions) if there was anything that made it worse (activities, situations) I was weighed and measured :oops: :oops: and had the tender point test. I was told to be dx'd with FM I had to have a minimum of 11 out of 18 of the tender points, but others on here have been told they need 8 of them for FM, so that could vary. The rheumy may want you to have additional tests and/or x-rays and wait for the results before giving you an answer to what is causing your symptoms.

When you have been given your dx, there could be several options:-
You could be discharged from the rheumy, with treatment and management being done by your gp
The rheumy could prescribe you meds to try, with you either going back there for another appt, or being transferred back to your gp
You could be referred to a pain management clinic where physios, drs and other relevant people work together to try and help you manage your pain and symptoms.
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby JemmaB88 » Sun Jul 17, 2011 8:54 pm

Hi Fluppy.
Thanks for that. I just want someone to look at me and take me seriously for a change. Being told its just IBS for 3 years and get used to it, has become somewhat tedious.
I have just had a bit of a moment with what I assume is Fibro-fog?? I was on the phone to my mum and I managed to forget what, and who I was talking about and it sounded like I was drunk! Got a bit of a headache now and feeling very achey.
One thing I forgot to mention earlier. Is ear ache a symptom? I have been badgering my GP about my ears, one mainly. He keeps telling me they are as clear as a whistle but it is because I use cotton buds. I haven't been digging the cotton bud right in there so it isn't damage. It feels like an ear infection.
If I need to start a new thread if I have new questions? I have a lot as this is all new and scary to me.
Thanks again. x
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby loubie » Sun Jul 17, 2011 11:18 pm

hi jemma
welcome to the mad house :lol:
hope your appointment all goes well :fingerscrossed: you will get some answers

the answer to ear problem is yes fm can make your ears feel like you have an infection
in them or just one.
i had the same as you, and now i know its my fibro that dose it.
if you have any more things you want to ask
start a new post as you will get more peeps answer you
if you keep putting them on this one members think its your hello post
and will not read it again
if you get my drift :roll: i am a bit :crazy: tonight :lol:

anyway good to have you with us :flowers: :blowkiss:
loubie xx

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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby FluppyPuffy » Mon Jul 18, 2011 11:50 am

It does sound you had a bit of a foggy moment talking to your mum :facepalm: :facepalm: It appears at any time and can make you feel a bit :oops: :oops: There some threads in Positive and Fun about the silly things we've done because of fibrofog which are :lol: :lol: :lol: when you read back thru them :D :D

Like loubie has said, start a new topic with different things you want to know so it doesn't get lost in your intro post. Put it in the bit of the forum you think it applies to, if it's not the right bit, we'll move it and let you know so you'll hopefully get some helpful replies :fingerscrossed: :fingerscrossed:

One of my first problems was ear related, and still is, so FM can affect your ears. Mine feel really full, almost like they're going to burst, like a really bad earache that comes with an ear infection or a cold or flu.
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby shazq » Sat Jul 23, 2011 7:20 pm

:welcome: to the forum Jemma :wave:
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Fibromyalgia Awareness Day May 12TH.
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Re: Not yet diagnosed but not feeling brilliant...ever!

Postby animalhouse » Mon Jul 25, 2011 8:21 am

:wave: :wave: :wave: :welcome:
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