New and in need of advice! (Before I go mad)

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New and in need of advice! (Before I go mad)

Postby Kate-Maya » Wed Apr 24, 2013 8:20 am

Hello my name is Kate and I am suffering with 'something'

I hope everyone is doing ok today and not in too much pain.
I really wanted to ask some ppl who know if what I am going through sounds like fibromyalgia.
And also how hard was it for you to get diagnosed in England, also what have you found to ease the
Pain.

So I have been to the docs quite regularly for the last few weeks had many a blood test done (ra factor
Inflammatory factor, hormones, thiaroid, and more) all negative. I am waiting for an app with a
Rheumatologist on the 10th of may bust from what I understand it can take years to get diagnosed,
So any advice and ideas welcome because I will admit I am struggling.

Symptoms started as pain that felt like it was in my joints (feet, ankles, knees, hands, wrists, elbows, shoulders)
This was pretty constant and a few weeks later developed to include my neck, sometimes spine area, hips and muscles,
(Legs, especially thighs, all or arms, upper and lower back) all of this with feeling exhausted, could range from feeling really tired to
I can hardly move or open my eyes. Everything gets worse with exercise, or though out the day especially if I try to do too much.
I also get some muscle twitching, ringing in my ears,sensitive to bright lights and some noises, and some very minor tingerling in my hands and feet. Cold wind or water gives me the sensation of a deep sort of bone pain. I also often get a weak feeling in my muscles, have gone of my food a little an alcohol too.

I have been on citalapram for depression forthw best part of a year and am about to rudimentary the does as I feel better from the deppesion (yey!). I did take pain killers for a while but they have helped greatly so I've stopped as they tended to mask things a bit and I then tried to do too much and felt worse. I have now slowed down a lot. An working part time as a waitress (which is v difficult right now!)
Oh and my gran had ra. I think that's every thing. Thank you so much to anyone who takes the time to read. Any comments welcome and
Questions too!
Thanks
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Re: New and in need of advice! (Before I go mad)

Postby painprincess1 » Wed Apr 24, 2013 10:19 am

hi hunnie , yes it can take years but dont mean it will for u . fibro is better known now. u sound like u have alot of the tender point that they will look for in fibro. look online for fibro tender points i bet u have most of them from what your saying.being tired is a big fibro thing to. also have u had pain for over 3 months that's something else they look for.tender points stiffness and pain. all the other bits just come along for the fibro ride . like sore skin ringing ears bla bla bla . im on Tramadol and paracetamol from the dr they also use anit drpressent to help with sleep and pain. if u need pain killers get dr and get some hunnie if it is fibro i will learn to use what ever helps u , pls lets us no how u get on xxxx
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Re: New and in need of advice! (Before I go mad)

Postby LouLou » Wed Apr 24, 2013 3:06 pm

:wave: :welcome: Kate-Maya

It's hard for any of us to say whether you have FM or not but like painprincess said it does sound like you have a lot of the symptoms. Most of us on here had quite a fight for a diagnosis and a long long list of various tests before we got an actual diagnosis.

Maybe worth while printing off the symptoms off the NHS website, writing a few notes of how they apply to you and go back to your GP and ask if he could refer you to a rheumatologist. A Rheumatologist is normally the one to give most of us our diagnosis though some GP's have diagnosed themselves.

When I started to feel symptoms of FM I did my list of the atcual symptoms and how they matched with me and took it to my GP. He agreed it was very likely but wanted to rule out everything else first. Unfortunately there isn't anything straighforward like a blood test or body scan which will detect FM which is why it does take so long to get a diagnosis. GP's and specialists just want to rule out all other possibilities before diagnosis FM.

Anyway, welcome again to the forum. This is a great place for info, for sounding off or for talking to people who feel the same as you do.
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Re: New and in need of advice! (Before I go mad)

Postby FluppyPuffy » Wed Apr 24, 2013 6:43 pm

:welcome: to our escape from it all Kate :cow-wave: :cow-wave: :cow-wave: :cow-wave: I'm sorry to hear that you're suffering with "something". Having a number of unexplained symptoms is frustrating to say the least :facepalm: :facepalm: Then for nothing to show up in tests etc compounds things even more as, altho you know there is something at work, you're not getting the answers to things that you are are so desperately wanting :grouphug: :hugs: :grouphug: :hugs:

On here, we can comment on your symptoms, and say whether it is something that we have experienced or come across before. The thing we can't say tho is whether it is FM that is responsible for them. It needs to be a suitable medical/healthcare professional who gives you a dx as, whilst things may be presenting themselves as FM~like, there are several other conditions that share the same sort of symptoms with FM, and all these other possibilities usually need to be investigated and ruled out before an FM dx is arrived at, which is part of why it can take so long to get a name for your problems.

The suggestion from LouLou about compiling info about your symptoms and comparing it to those of FM to see where there are similarities is something that a lot of people do as part of their finding~out quest. This linky might help if you decide to try it http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx When you have your appt, take this info with you as it can all help with determining what is the cause of your problems.

One thing you haven't mentioned (as far as I can see) is how long you have been experiencing your symptoms and things, apart from saying that you have been at the docs regularly over the past few weeks. For FM to be considered as a potential dx, one of the criteria that tends to be met is pain being present in all 4 quadrents/quarters of the body for a minimum of 3~6 months. If it hasn't been present for that long, that doesn't mean that it isn't FM, but it could mean it takes a little longer to get a dx as the specialist/consultant may want to wait a while to see if there are any changes before giving you a definite dx.

Whilst you're waiting to find out things, stick with us. There is lots of info and advice on here that might help make some things a little more bearable. One of the boards is purely about hints and tips that have helped different members cope a little better with their condition, maybe having a look thru there could be somewhere to start. One thing that helps quite a few of us is applying heat to affected areas. This can be a hottie bottie or a heated wheaty bag or a soak in a nice, warm bath, or a leccie blankie on your bed. As we're all affected in different ways, it's a case of trying different things and twiddling and tweaking them to find what makes a difference to you.

Think I've waffled on at you for enough now :oops: :oops: :oops: Anything that you want to know about, don't be afraid to ask as there's a good chance someone will have experienced something similar and there maybe some helpful advice for you :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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Re: New and in need of advice! (Before I go mad)

Postby shazq » Wed Apr 24, 2013 6:50 pm

:welcome: to the forum Kate :cow-wave:
As a Public Moderator 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.
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Re: New and in need of advice! (Before I go mad)

Postby Kate-Maya » Fri Apr 26, 2013 8:31 pm

Thanks all. For such a warm welcome :)
I have been having these problems for about 9 weeks and I have a couple of weeks
Until my rheumatologist app. I found the info about taking the nhs symptom list about fibro with
Me especially helpful. I wouldn't have thought of it myself so thanks! Atm I am just pacing myself,
Resting a lot and taking a lot of baths. I might take up swimming soon as I can't face any thing eles
Right now. I do walk at least 60 mins (very slow pace!) most days and then am on my feet a lot at work
So anything more on a daily bases really tires me out.
Thanks for advice again!
Peace and love
Kate
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Re: New and in need of advice! (Before I go mad)

Postby Kate-Maya » Mon May 13, 2013 8:54 am

Hmm ringing in my ears really intense tonight and I deffently think my hearing a bit sensitive as
I can here the bubbles in my g&t loudly and it's really irritating me!
Just a vent really!
X
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Re: New and in need of advice! (Before I go mad)

Postby *Lisa* » Mon May 13, 2013 9:20 am

I would get your ears checked out just incase you have an infection ir there blocked with wax.

I hear the popping and and bubbling when my ears are blocked.

I also get ringing ears especially when im sooo stiff around the neck.
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
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Re: New and in need of advice! (Before I go mad)

Postby Picklepudding » Mon May 13, 2013 11:22 am

Hi, just to give you a bit of hope, my pains started about 4 months ago. I had my first rheumatology appointment 2 weeks ago and was provisionally diagnosed at my first appointment. I've got another appointment next week for the results of more blood tests and xrays to rule out other conditions. I have a lot of classic fibro symptoms but I'm also missing quite a few classic symptoms as well. So it doesn't necessarily take a long time to get a diagnosis.

Good luck xxx
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