Some advice from people who understand !

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Some advice from people who understand !

Postby Nicolaev80 » Wed Apr 24, 2013 5:31 pm

Hi, I have just joined this forum. Where do I start??? Any tips on how to use the forum would also be helpful.

I am 33 years of age with two young children (8 and 4). I work part-time (three days) in a hospital.

I have underactive thyroid and IBS and am currently being investigated for Coeliac disease and FM. I am having an endoscopy in four weeks time for CD. It was only today that I saw my GP and have been referred to a Rheumatologist locally for what I believe is FM.

My mum (54) has CD and IBS and was diagnosed with FM nearly eight years ago. I found it hard to understand truly how she was feeling.

If I really think about it, I reckon whatever is going on with me, I have had for many years. I have been fobbed off that it is work related and the position I sit in affects my shoulders and that is why I am in pain?! Occupational health gave me exercises to do and an MRI scan revealed nothing apart from an incidental finding of a fluid filled bursa.

I'm just going to list the way I feel and maybe you guys that know best and have already had a diagnosis of FM could tell me what you think until I see a rheumatologist (which could take up to six months).

Typical day...Struggle to get out of bed in the morning, not only because I haven't slept much, but because I am so tired and can't get my head off the pillow. Joint/muscle pain, mainly in my shoulder blades, but it does radiate to my neck and lower back. I very rarely get symptoms in my legs/arms, apart from weird twitches!!

Forget fullness, major brain fog (always feel hung over, without the alcohol!!), pain behind my eyes on moving them, dizziness, symptoms of anxiety and worry, feeling very low and crying a lot. I also feel nauseous a lot of the time. Always cold, especially hands and feet. I take a long time to get to sleep and then when I finally sleep, it is never a full night and once I wake, I cannot go back.

Weirdly I did not think this had any connection at all until I read some of your posts, but I have just had a gum shield for a TMJ joint disorder!!

Not sure if there is any link, but my B12 is low and my D Dimer (which usually indicates a clot somewhere in the body) was over a 1000 the other day and I am wondering now could this be connected to Lupus or inflammatory markers????

The sad thing about it is, I haven't told my husband. He is very healthy and does not understand. I am very good at hiding the way I feel and am going to wait to see a specialist then if I am diagnosed, will print a load of stuff of for him and my family so that they can understand.

The only other person who really understand how I feel is my mum as she suffers really bad and is just getting over a major "flare up". I can't say I am as bad as mum, but the past month or two I have struggled to stay sane and I feel my family are suffering because of it.

I am hoping that joining this forum will help me to understand more about the condition. I know I should not self diagnose, but have done lots of research on the condition and a lot fits

Sorry my post is such a long one, but thank you for taking the time to read it.
xx
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Re: Some advice from people who understand !

Postby shazq » Wed Apr 24, 2013 6:29 pm

:welcome: to the forum :cow-wave:

A lot of your symptoms do sound like fibro but they can also be other conditions as well. It does seem to run in families so it is possible you could have it?

Have a read around the forum to see if any other symptoms fit and write them all down to show the Rheumy.
When you go to see them take someone with you as you tend to forget what they say as soon as you walk out the door. :lol: :facepalm:

Fibro will not show up in any tests so some docs will do tests first to rule other things out. :goodluck1: hope you get some answers soon.
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Re: Some advice from people who understand !

Postby FluppyPuffy » Wed Apr 24, 2013 7:20 pm

:cow-wave: :cow-wave: and :welcome: If you can give us some ideas about what you're wanting to know about with using the forum, then we might be able to give you some pointers.

Sorry to hear how you're being affected by things, there are a few others who have recently joined us that are in a similar place to where you are at the moment.....various frustrating and unexplained symptoms that could and have been put down to numerous possibilities that could be the answer but still don't seem to be quite right :-? :-? :-? :-?

As Shaz has said, whilst what you have described could be related to FM, esp with your mum also having the condition, there could also be other reasons behind it as there are several other conditions that share very similar symptoms with FM. And as FM doesn't show up in any tests, scans etc, the dx~ing process tends to involve all other possibilities being investigated and ruled out. Once all other possibilites have been discounted, that is when an FM dx is usually given. This linky might be helpful to you as it has more info about the condition http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx If you have a read thru things and make some notes about your particular symptoms and problems and how/why you think it might be FM, then take it with you when your rheumy appt comes thru, it might be useful in helping identify the cause of your problems.

I don't want sound preachy or mother~like as I can appreciate why you haven't said anything to your hubby yet, and also why you're covering up how you are feeling with all of this. However, it's not something that works well for very long :facepalm: :facepalm: :facepalm: I know that ultimately it is up to you how you manage things, but you might want to reconsider this before you go and see the rheumy as not only could it help you prepare for the appt, but it might also help your family prepare and support you for what could be said.I know this from my own experiences and the fallout it can bring, not just for you but for everyone around you as well.

We'll try to offer you the understanding and support and info and advice as you try to get those answers that you're looking for, so anything that you're wondering about, just ask about and we'll see if we can help you with it :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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Re: Some advice from people who understand !

Postby Nicolaev80 » Wed Apr 24, 2013 7:36 pm

I would just like to thank you both for replying.

I am keeping a diary on how I'm feeling on a day to day basis and have listed symptom and feelings down as not to forget (big problem) when I do see the specialist.

It's all a bit of a mystery at the moment. I can't wait to see somebody about it.

Thanks again. I am reading lots on here and already feel like I have somewhere to turn.
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Re: Some advice from people who understand !

Postby FluppyPuffy » Wed Apr 24, 2013 7:47 pm

The diary is an excellent thing to do, something that quite a few of us have done to try and help with various things. Glad you feel like you can turn to us already, with how vague and unpredictable the numerous symptoms we all experience are, having an outlet where you know people understand what you're going thru can be a real boost, esp during those darker times :grouphug: :grouphug: :grouphug: :grouphug: :grouphug:
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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